Asperger Ninja

Opening Doors

2011-12-31T11:20:00.000-05:00

I've been spending a good deal of time going over 2011 and what a truly amazing year I've had. It was not all unicorns and glitter (shouldn't it always be? Lol!), but it was a year of tremendous and powerful change.

I've been reluctant to let it go. It's such a glorious feeling. If I could bottle it up and save it, to remind myself of how far I've come..I would. I know I cannot, and must move on, but the fact that I did this on my own power (with super support from my best friend) is something I want to revel in just a little bit longer.

I spent the last quarter reviewing what was NOT working in my life. What was driving me crazy, what was giving me stress, what was making me slow down, what was keeping me from connecting to people. How freeing this was to make what appeared to be monumental hurdles just disappear with a simple email or a conversation. It's made such a difference in my life in a short period of time. I looked closer inward, to see where else I needed to make changes.

I think being around the corner from 40 makes me review this life a bit more closely, too.

I've been in therapy to deal with my past traumas, which still haunt me. It has been slow going, and at points very painful and sad. I am so thankful for what this intense therapy has been doing for me. It made me realize that I had things, emotions, situations which were behind big locked doors. Similar to Marley, I was burdened with all the keys to these doors which I had hidden away these memories, but not shelved them properly. I couldn't give away the keys. I certainly couldn't deal with all of these events on my own, and they would saturate my thoughts and cloud my thinking.

Through this therapy, we have been addressing each issue, one by one, and shelving the memory instead of letting it float. Shelving gives it place, which relieves it of its "ghostly" powers. I have a long way to go, but it has made such an impact and change. I am less burdened with the keys and doors of past pain.

New Years has been a difficult time for me, too. I had a bad New Year's a few years ago and have let the day slide by without celebrating it since. All I could think about was how this one event had totally ruined my New Years forever. I wanted to punish myself every year by NOT celebrating and not digging up what brought me here. This year, and very recently, I have chosen to let go of this memory and replace it with a new one. My boy and I will be going on an adventure, spontaneous and exciting. I have no idea where we will go or what we will do, but I'll be with my son and we're going to celebrate it together.

“Long enough have you dream'd contemptible dreams,
Now I wash the gum from your eyes,
You must habit yourself to the dazzle of the light
and of every moment of your life”
― Walt Whitman, Leaves of Grass

Where we're at...

2011-12-05T21:58:00.001-05:00

It's been too long away from the words, from the people here. I feel like I'm travelling in a foreign country, and I don't speak the language. Yet, I am pulled, called to spill my experiences and feelings.

Nate is doing very well in school, despite much prodding on my part. He doesn't have the inclination to do any type of work that doesn't come to him either easily or that is lacking the immediate satisfaction of something stimulating. It's a huge challenge to keep him focused on any sort of goal that doesn't have a quick return on investment. However, something has helped us speak on a different and more productive level.

After reading this book, I realized that we were not talking to each other, we were talking at each other. We discovered that punishment (i.e. taking away his video games) does not work, it's actually makes things so much harder. I don't want this post to be a review of the book, which I could very easily do, but I want to highly encourage it as a new tool in your arsenal of things to try with your children. I could see that Nate and I were like ships passing each other in the night, aware of each others presence, but not truly noticing what was going on and not able to find a way to navigate differently. This has given us that power. At least for now.

I do not claim that this will always work. I think that's the caveat with always building up your parenting reserves. You have this confidence that it will consistently be effective, then the moment comes when it does not and you're dumbstruck for a few weeks to find a new solution. That's where we were about 2 months back.

It's been a strange and happy accident, this sudden and magical micro transformation between us. We have been talking kindly, being more aware of each other's needs and feelings, working to be more flexible, having actual moments of "normal" parent/child bonding. I likened it to that moment in "Awakenings" when Robert Di Niro walked over to his mother and smiled and gave her a hug after years of being catatonic. We've reached across this gigantic divide to touch each other in a place I didn't think we could. I shudder to think that we won't have this ever again. I'm holding it so close to my heart and building a place in my brain for it to always be there for me to access whenever I choose. Perhaps I'm being unrealistic and subjective, but when you feel you have never truly connected that way with your child and then you do, you never, ever want to let go.

We're off for his neuro psychological evaluation tomorrow morning. They are checking to see where he is and see if the diagnosis is still valid. There was a part of me that was afraid of what they will say. That they'll change his diagnosis and then we'll be set adrift and have no services and things will get exponentially harder. I know we are very blessed and very lucky to have all the services that we have in place. I don't want to ponder the possibilities of NOT having them. I cannot control the outcome and I will deal with what ever the results are. It's funny that I don't know how I would react if they took a diagnosis or possibly both of them away. We've identified this way for so long. Worked so hard in this vein to advocate for what we've been told he has and what I as a growing therapist have observed as objectively and factually as a loving advocate mother can. Changing the diagnosis won't change the way I feel about him, but I would almost feel betrayed if we are told something different. Like my instincts and the psychologist's instincts and anyone else in the mental health community who has seen him and observed him in some capacity are told that they are wrong. That there eyes, training, skills and instincts were off. That's a hard storm to weather, at least for me. But I know that I cannot weather a storm that has not been predicted, so I must stay strong in knowing what I do know until the report is other wise...

This year has been a huge transformation for me, without me planning it on being so. From my first steps into January, still full of doubt and anxiety, to the end of July where I felt my personal journey of self exploration was complete to mid November where I find myself not complete and nursing my long neglected personal trauma and slowly shelving those memories away, where they belong. In between there lies old jobs left, new jobs found, debts paid, friendships tested and strengthened. I have been humbled in some very close and dear friends who have been aiding me on this journey. It's some of the most painful emotional steps I have ever experienced. It is not a sudden landing, this healing, it is a long sojourn. I am thankful to finally have started this path to my recovery.

I thank you for reading this blog. I used to do this because I thought I wanted notoriety and recognition. My intent is to share my experiences with the Universe and hope that maybe one person takes something and it makes them smile, laugh or perhaps change their perspective.

That's where I'm at..

Hey Mr. Sandman...

2011-10-25T22:23:00.002-04:00

Nate has usually been a good sleeper. At 6 weeks, he slept through the night, much to my chagrin and surprise. After my body had become accustomed to waking up at 2 AM, the first time he didn't make those tell tale cries, I was CONVINCED he was dead. Accustomed being me NOT sleeping. At All. For 6 weeks. In my half awake stupor, I ran into his room and saw him blissfully asleep, snoring like a sawmill.

Speaking of dying, and sleeping, and not sleeping...

Nate has been going through this phase where I put him to bed, and not even 10 minutes later, he's in my lap crying. I ask him what's wrong and he says, "Mom, I'm going to die. I don't want to die. I don't want you to die. I want to live forever." His face scrunches up and the tears fill up his eyes...

We've had this discussion before. We've talked about that he's here now, he is safe, I am safe. Nothing is happening to either one of us right now. He can't focus on the right now. He's seeing lightyears into the future and it makes him very sad. Tonight he said my life was half over. I did my best to distract him with his stuffed panda bear to take his mind away from these very intense feelings.

This is very normal behavior for kids his age. They will have these moments where they realize that yes, life is not infinite. Its pretty darn scary for them. I have tried to allay his fears in the moment. The "dreams" (aka anxiety) have repeated enough that a trip to the psychologist/psychiatrist was already scheduled, and was very needed.

His psychiatrist asked him some questions and he admitted he's having these "dreams" more often than he used to. He was afraid to tell me, as to not worry me. She listened to him intently and we spoke for a while about his sleep habits, what's happening at school, etc. I honestly thought he was starting to process the divorce. He laughed at me when I asked him, "Mom, no, that's silly!"

We've upped his Risperidone to 1.o mcg instead of .5 at night to help him sleep and deal with what appears to be overwhelming anxiety. I hooked up the sound machine again, which seemed to really help his mind calm down and focus on just the sound in his room instead of the sounds in his head.

I feel so bad for him, I truly do. I KNOW what that feels like. I had similar thoughts and fears at exactly his age and I got no support, no understanding. At night, I also need a white noise machine. It would sometimes take me over an hour to fall asleep, with my thoughts buzzing in my brain like a hive of nervous bees. I know he doesn't have the coping skills yet to handle those kind of anxiety inducing thoughts. My ultimate hope is that he will be able to do it, on his own and with out medication.

For now...he's sleeping very soundly, with a symphony of artificial crickets lulling him into (hopefully) REM sleep tonight...

Anyone Can Use The Force

2011-10-24T11:22:00.000-04:00

The force is strong with you, young padawan...

I saw this story on OffBeat Bride. No, I'm not getting married, but I like to look at all the pretty pictures and see different folks and their fancy and unique wedding attire.

However, I read this article and had to share it. Here is a little excerpt: (taken with permission from Ariel Stallings of OffBeat Empire)

"T, the flower girl, had spent the morning hiding under the bed. She has autism, and the prospect of an event with all those people was pretty daunting. T's aunty finally coaxed her out from under the bed with the promise of a Yoda backpack."

I felt SO strongly for this little girl and for this family...reading about how they wanted this adorable flowergirl in their wedding, but her autism can make every day a struggle, never mind an important day. Her aunt (Bless her soul, truly) figured out how to related to T on her level and make her comfortable.

I won't share the whole story, as you can read it HERE. I know there are times when life with autism can be down right exhausting and the LAST thing that you need to/want to/have to deal with is your child having a meltdown on an important day. Sometimes, no matter how much planning you do or how much you prepare them, things can end up with your little one under the bed.

I applaud this aunt who took the time to make this child feel included, special and comfortable on what would have been a very daunting and overwhelming day otherwise. And don't think I did not miss the mentoring undertones of the backpack either. We all need a little aid, a kind & sage voice in our ear encouraging us to be brave in the face of fear. Take a look at the picture above and tell me you do not see calmness and safety in that cherubic face...

"My ally is the Force, and a powerful ally it is..."

Allons-Y!

2011-10-18T23:00:00.000-04:00

A few weeks back, I got a smart phone. I was pretty happy with my regular cell phone which got texts, pictures, and calls. I never had a need for one, until I had gotten a voicemail from my now new employer who said, "I left you a voice mail and also sent you an email thinking you'd get it faster on your phone."

Do you know the feeling when your stomach drops out of your abdomen and onto your shoes? Yeah, that one. I had it.

I sheepishly replied, "I don't have one of those phones..."

I had always wanted a phone like that, but didn't think it was for me. I mean, I wasn't a big technology kind of girl. I like somethings to be updated and new (like my makeup, holla!) but phones? As long as people can get to me and I can call 911 in an emergency, I was good.

I pondered for a while if I wanted one or if I needed one. I couldn't truly decide between the two, so I said, "What the heck?" I bit the bullet.

I love this phone. I got a certified pre-owned Samsung Fascinate i5oo Galaxy class. It is a sweet machine. One of the amazing things on it is the camera. I started clicking pictures right away. One of the first ones was this, my Nate after Hurricane Irene:

My friend Trish comments on Facebook with this:

T: He's got Tenth Doctor Hair!

August 30 at 8:21pm ·

Asperger Ninja: Ahaha! All he needs is a bowtie!

August 30 at 8:48pm ·

Now, Trish is a graphic artist. She sends me this a few minutes later..

My child, the 12th Doctor? It could TOTALLY happen!

I'm new to the Dr. Who phenomenon. I remember my father watching Dr. Who back in the late 70's. I know, you're probably all saying, "WHAT?! Mr. D watched Dr. Who?!?"

Well...he probably didn't LIKE Dr. Who, but it was right before Wild Kingdom, so he'd watch it anyway..

I like to thank my fellow Whovian, who has gotten me into watching the Doctor and eating Jelly Babies..

Fish sticks and custard, yo!

What does Asperger's look like?

2011-10-06T00:11:00.000-04:00

What does Asperger's Syndrome look like?

According to WebMD: People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language.

National Institutes of Health: problems with non-verbal communication, including the restricted use of gestures, limited or inappropriate facial expressions, or a peculiar, stiff gaze.

There is a perception that children with Autism have a flat affect and cannot express themselves verbally or socially. People see what they want to see. They look at the name. With a name they don't look beyond the textbook definition of what's in front of them. Most people need labels to define persons, places or things.

Look at the magic that dances behind my son's eyes. That is childlike wonder and merriment. He is happy, joyful, goofy and creative.

He doesn't fit under any one column or category. He strives to carve a place for himself and to BE him. That's his goal. My goal is to help him do that.

My child has labels. He's a geek, a nerd, a Pokemon fan, a Lego builder, a videogame master. He has Asperger's Syndrome and ADHD. However, the label I use most and like best is he is my son.

Regardless of what he has, and any struggles that we face, once you get beyond all of the noise; there is that small quiet space that you created together when you were carrying your young. That space you retreat to when it is bed time and it's that special moment for snuggles and silly jokes and hearing that little creature you made breathe. That's what matters most.

That is love.

Testing...Testing...

2011-09-21T23:22:00.001-04:00

Just when I think I have a grasp of things, I get thrown a meteor. Both of us have been slogging through what feels like a quagmire of new routines, more responsibility and less down time.

We've both been cranky, testy and easily agitated. It hasn't been easy here at the Dojo.

Nathan's homework has increased exponentially. He's now up to 60 minutes a night, compared to 30. He started slacking after the first week. Forgetting a math sheet here, saying he didn't have to do that sheet there. Playing videogames at his afterschool program without touching a stitch of homework, even though he said he had done it and he hadn't. His attitude stunk, his work ethic was poor and he wanted to have his old routine back. He wanted me to do the writing, he didn't want to put the effort in. It was the same pattern from before the end of school in the 3rd grade.

And I wasn't having any of it.

I understand that Nate has certain needs. I know that he needs to have his approach to homework tailored to his work style. However, he still needs to DO it. His perspective is, "Well, if I ignore it or feign that I don't know what's happening, then I'm not responsible."

One of the biggest things I'm working on with Nathan is to have him learn more responsibility.. There are a few things he is responsible for now. Getting dressed, washing himself, brushing his teeth and hair, putting his dishes in the sink and his laundry in the basket. The big one is homework, which has always been an epic battle. I knew to get his attention I had to pull the big guns.

I took away video games. More than once. Three times in less than a week.

Yep, I did. I knew what would happen when he did it, too. Big tears, big screams, big dramatic movements across the house. Banging of heads into pillows. Calling me a horrible mother. Hiding in his closet. All the things I avoided in the past because I didn't want to deal with the melodrama. I was being lazy, too. I didn't want to endure it. Who wants to hear their kids scream for an hour or more? Not me, that's for sure.

I had to bite the bullet and deal with the consequences. He told me he hated me, hated the rules, hated his homework. I reminded him videogames are a privledge, not a right, and you have to earn it. There were a few days that were rather dark and sad as he contemplated his fate.

The past few days we have seen a little light at the end of the tunnel. His afterschool site director said that he is seeing other boys go do their homework first, and then go and do videogames. He is now doing the same behavior without being prompted by others. This is a step in the right direction. There will be days when we can slack on the routine, but the routine is being established right now. Once the pattern is honed, then some slight changes can be made.

Like Nate, I too, am struggling with my new job. I am not accustomed to being in charge and not being micromanaged to death. I have a lot of freedom, which in truth is a little frightening. I am swimming in a sea where I am the bright shiny new fish and this pond has never seen the likes of me. I am new to a program where the previous director was there for 11 years. Its daunting.

The kids are fighting hard against change and are very outward with their dislike of it. I've had issues with my staff over changes in procedure, where I had to have my program director come in and have a sit down with an employee as I have not been able to make any headway with her.

I have been leaning on my program director heavily for advice, guidance and procedure, as it's an entirely new ball of wax. I feel like I'm trying too hard to have my wings dry quick enough for me to fly on my own, but on the other hand, I am really afraid to fly.

Today, I had a parent come up to me and tell me she felt I was using "shameful and demeaning language" when speaking with the children. Not her child directly, but other children. I am not all sweetness and light. I am very kind and respectful, but if someone is acting up, I will call them to the carpet on it in a firm tone. I don't yell. She said that she wanted to talk with me further about this. I was totally thrown off my game. I ran through the scenario about 3 million times in my head, second guessing myself, wondering if I was really being mean to them, what was I doing in this job, am I cut out for this job, etc.

I called my best friend, in a panic, and he said that I did everything I was supposed to do. I called my program director and talked with her about it, again, feeling like I'm micromanaging everything. I explained everything and she laughed and said, "Really? You?" I was so scared to lose my job over this, but tried really hard not to express that over the phone. She asked if she wanted me to be present at the meeting and I said yes, I would feel more comfortable. Which is true. But then I felt like I'm an idiot for not being able to figure this out on my own. Honestly, I know this mother will not like what I have to say and ask for my program director anyway, so I'm killing two birds with one stone.

Then, not an hour later the mother calls and asks to set up a meeting. I tell her that's no problem. I tell her I'll be meeting with my program director in the morning and that she'll be there when we eventually meet. She asked, "Are you sure you want me being candid and honest in front of your boss?" I said, "I have no problem with that at all." Which is partially true. However, I'm kind of scared that she'll just paint this horrible picture of me, which I'm then afraid I'll be revealed as a big hack and then I'll get fired and be poor and have to crawl on my hands and knees to get my old job back.

So much drama in such a tiny little space. I'm not handling this very well at all. I even called my therapist to move my appointment up, even though I've been doing so great at dealing with my shit and handling my problems and using positive affirmations, it all went down the toilet today. I felt weak and worthless and questioned my whole existence.

Damn, that was exhausting.

I was very thankful that Nate had his homework mostly done when I picked him up. That made for an easier evening. I then announced we were going to get ice cream. Before dinner. I thank Kim & Jason for that little nugget of inspiration. We went to our absolute favorite ice cream place and he had the Kung Fu Grasshopper (Mint chocolate chip) and I had the Raspberry Cheesecake and it was as sinful as it sounds and I ate every single bite of it.

I looked up at the stars and we saw the big dipper and the little dipper and I said, "Nate, I stand here with you, and underneath the stars and I realize that my problems aren't as big as I make them out to be. That I can make it through anything."

He smiled at me, his face covered in green and black smudges.

This rattled me, for sure, but it did not break my foundation. I have a very strong support system in place. I thank my best friend in the whole wide world, with whom I go and have milkshakes at midnight, and I can talk to him about anything and everything, and vice versa. He is my truest and closest confidant and believes in me implicitly. He is my biggest supporter. :D

I thank my boss, who has so much faith in me and what I can do and makes me feel great as I am stumbling through this minefield, making mistakes, watching things blow up and yet, she still has me on staff and would back me up in a nanosecond.

I thank the Universe for sending this to test me. Sometimes you need to have your mettle (metal? lol) stress tested. Mine went through the ringer and I made it through to the other side. I will work that much harder to be ready to endure that again.

Owning It

2011-08-27T14:29:00.001-04:00

I spent some time this month watching re-runs of RuPaul's Drag Race. You may not know, but I am Miss Gay East Coast 2nd Runner up. I have a plaque to prove it.

See, I am a fabulous drag queen.

My bachelorette party was at a drag show at Jacques. This was a few years ago and I was a much different person then. I was much heavier, more self conscious, so much MORE that I was not dealing with then. I felt everyone else was so much MORE than I was. I almost didn't even GO. But I was dragged there (in overalls no less, what the HELL was I thinking?!) and had a front row seat to the madness and magic that is professional drag.

I freakin' LOVED it.

The ladies LOVED the fact that there was a table full of women in the front row. They pulled us up to dance with them. They bought us drinks. They heckled my outfit. They were having a pageant that night and one of the ladies had to drop out. We were the only bachelorette party there (and I think the only straight women there. This was before drag shows were popular for the bride to be) and the host came up to me and presented me with this plaque at the end of the evening. I thought it was hysterical and cheeky and so much fun.

Fast forward to 2011, where Nate is watching drag queens perform and transform in and out of drag. I am all for him seeing people in different facets of their personality. I have no problem with him viewing this, as I am there to answer his questions and you know what, he may actually encounter a drag queen at some point in his life. There are straight and gay people in the world. Some gay people do drag. Some straight people do drag. And in this instance, I was exposing Nate to mostly gay men doing drag.

He was confused at first. He said, "Mom they're women!" I said, "Yes, they are." He then asked, "But wait, who are those guys with them?"

The FABULOUS JuJubee marrying...himself!

I said, "Those men are what the ladies look like without their makeup on. They are performers and put on a show. And they dress up like women."

He asked, "A Costume like you do, Mom?"

I said, "Yes, but I'm still a woman when I take mine off. "

"Will I be a drag queen?" he asked. He smiled.

"If you are, I will be the proudest mom ever." I said.

"Why?" he questioned.

"Because that is who you are. No matter who you are, or what you look like or how you dress, I will always love and support you."

As we watched, we turned into big fans of Jujubee, who is a Bostonian (WORD!)

Her beauty, grace, poise, humor (which is a hammy casserole chock full of vaudville-ian goodness) and style was what drew us in to keep watching. We were very SAD to find out she did not win! (We do feel she got robbed.)

Watching the show and seeing the ladies work, interact, solve problems, be creative with "What ya got" are skills everyone needs. We aren't always the same, we don't agree on all of the same ideas. We do need to connect and to work with people, even if we think they're complete morons.

Another gem we took from this is the concept of owning it. Owning yourself, your faults, strengths, emotions, looks, choices...all of it. One of my biggest struggles is being comfortable with who I am. Early in my childhood I felt it was not okay to be me. Like I didn't deserve to exist as I was because I was told it was wrong. I couldn't express myself in ways that I needed to and was significantly repressed and curbed to the point of being emotionally stunted. The actor in me was able to hide this behind many layers of happy looking drywall, but for many years, I spent that time not flourishing or growing.

Only in the past year have I truly been able to deal with this issue. It's something that I have to work on every single solitary day. It may sound corny, but I spend my time reminding myself how incredibly awesome I am.

I HAVE to. It's part of my daily work. I look at inspiring quotes, I read them and repost them on Facebook. I tell myself I can do anything that I put my mind to. I write in my journal about what is bothering me and try to find solutions to them.

I am owning it. I call it dealing with my shit. I am dealing with my shit every moment of every day, not just when it becomes a massive pile of unmanageable shit. I talk outloud and say, "Okay, calm down. How do we solve this? What can you do right NOW?"

It's about the right now. It's about dealing with your shit. It's about being awesome and knowing that you're awesome. We're all awesome. It's 100 % true. You have to TRULY believe it in yourself FIRST. THAT is the hardest, most difficult concept to wrap your head around.

My shit consisted of getting therapy, daily self affirmations, working to be more accepting and loving of myself and of others and not being responsible for other people's emotions, actions or how they felt about me. I spent so much energy and time and tears on that one.

You only own yourself. You own and are responsible for yourself, your choices, your emotions and your life. Only you can change you. It is a simple concept, but one many humans, including myself, wanted to not acknowledge.

Now that I've done these changes, I see a monumental shift in my relationships. Nathan and I are in one of the greatest emotional spaces that we have had in a very long time. We're able to really talk to each other, be present in our conversations and be truly honest in expressing our needs.

I am blessed, blessed, blessed in my personal life, too.

I thank RuPaul, the Glamazon of Drag Queens and my new patron saint of inspiring quotes. She brings it to the table without throwing shade and with bucketloads of Southern Charm and grace. She tells it to you straight.

We all must walk through the fire. It will burn, but it will reveal who you truly are. No matter what that is, it is phenomenal because it is you.

As RuPaul says, "“If you don’t love yourself, how in the hell you gonna love somebody else?”

How We're Wired

2011-08-17T22:29:00.000-04:00

I have gotten to a place in my life where I'm FINALLY figuring out that I'm wired differently. I mean, I always knew I was unusual, and I couldn't really discern why. I thought it was my upbringing, my unholy passion for Duran Duran, the pink/white label Aquanet I used in the 80's, playing Dungeons and Dragons, reading Shakespeare for fun. But, alas...no.

I didn't think about it too much until I was preparing Nathan for the summer transition back to school. I have been gathering things for him to practice: Reading, writing, math, science. I wanted him to do it in small bursts where he wouldn't get overwhelmed. I also didn't want to have a repeat of the first two months of school where every day was a struggle to get him to do any sort of work.

As we sat down, I saw that he was liking using the computer to do his work. There are alot of educational games he can do, including reading. He was engrossed, entertained and dare I say it?....educated. It hit me like a rock falling out of the sky. Oh My God! Why didn't I see this before? I think they refer this to an "Aha" moment, which I'm always so late to the dinner table on those.

But, I saw it. He does not process in the same way that others do. So why am I forcing him to do the work in the same fashion over and over that does not WORK? Why can we not find a new route to the same goal? If the goal does not change, what matters which way you get there?

I know this will be a tough sell. I know this involves meetings and IEP amendments and gnashing of teeth. If it means that Nate gets to have an awesome education experience instead of constant anxiety and frustration, then sign me up, sister.

As I spent this time reflecting on Nate's needs, I looked at my own and had another rock fall from the sky, this time harder (as it was trying to get my attention). I am not your typical person. I like My Little Pony and all things Halloween. I do not work a full time, 40 hour a week job. I have multiple sources of income. My house is a chaotic mess of art supplies, books and 20 million pairs of unmatched socks. I have GAD and choose to work through it by breathing, journaling and occasionally stuffing my face with Cheez Its. I'm back in school after 20 years of figuring out what in the hell I wanted to do with my life.

I have come to the conclusion that I don't have to follow society's norms or paradigms. That I can choose what path works for me. People thought I was NUTS to give up full time employment and do a bunch of odd jobs. I took a huge leap of faith, I've been doing it for 6 years and I don't ever regret it. Friends ask me how I juggle all the things that I do. Nathan, work, home, school, theater, doctor's appointments. I always reply, "I just make it work."

I don't act my age. I didn't fall into that trap of mommyhood where you lose all sense of identity and purpose. I wanted to evolve. I wanted to better and challenge myself. That will be a long process, but something I look forward to with great relish. (Well, I really hate relish, but you catch my drift)

In addition, I am working on being more open to friends, and sometimes complete strangers. I got my nails done with my sisters last weekend and the adorable Vietnamese woman who did them told me about how she misses her homeland and that I was so friendly and nice to her. I've had friends on Facebook tell me that my string of positive and affirming quotes have helped them through some tough times. I have reached out to them, too, and told them to email me if they ever needed anything.

I normally would not do this. I am generally reserved and do not like to reveal myself, as I have self esteem, self confidence and trust issues. (Who am I kidding? I have a full subscription! LOL!) It's built into me that it's WRONG to be me, that people KNOW I'm weird, therefore, I will struggle to make friends because I'm so damn strange. Finally, reality came for a visit and slapped me across the mouth and said, "You're denying the chance to connect with people." That's all we're looking for in this world, I think, is a way to connect. I'm doing it now and it feels awesome.

I'm sharing this awesomeness with Nathan. He has benefitted from this, too, and is the better for it. More flexible, more aware, more happy in his own skin. We both are and that is such a gift.

It's Alive! ALIVE!

2011-07-30T18:13:00.001-04:00

From the depths of nothingness, we rise again!

So much to tell, so little time to truly explain it in.

Nate is now 9, and is enjoying his 2nd year at Camp STAR, which is a YMCA camp which integrates kids with Special Needs with neurotypical kids. There are 5 kids in his group, and he has his own counselor. He's doing AWESOME. I got one phone call, and that was on his birthday, because he forgot that I was picking him up later in the day. Besides that, nothing but awesomeness, happiness and him growing like a weed. I don't know how long that will last, the medication change (went up on the Concerta) seemed to help lots and he's on a great streak of being very aware, using his social skills, expanding his theory of mind and realizing that other people don't share his perspective and that it is okay. He is more active in sports at camp, if he wants to play a game he will, if he doesn't, he will help facilitate the game. He had friends from school come to his birthday party for the first time. He was very happy to see them. Even his bully, who he HATED, wanted to come, I told him that we need to see that boy out of a school environment. What a pleasant and well mannered boy he was. Granted, he was probably being on his best behavior, but he was not a shred of trouble (and I can smell trouble!) and Nathan remarked how different he was. I was glad to dispel that myth in his head and how proud I was that he allowed the class bully to come into his home.

Me? I'm head counselor at the ARC's summer program. It is the hardest work I've done to date. But what truly helped me through is therapy and the great support from my counselor Marcy and from friends and upper management.

I didn't realize how much anxiety ruled my life until I figured out that anxiety was really ruling my life. It's a daily struggle to keep myself focused on that moment, but I'm doing it quite well. When I first went into therapy, I was talking about my problems, which was awesome, but wasn't doing any work to solve them. When I knew I had to actually do work and do therapy hand in hand, that's when progress emerged. There are days I still have anxiety and sometimes it's crippling. I know I will have it for the rest of my life. I know now that I have options. I can call friends, I can write in my journal, I can breathe through it. If it's really bad, I can leave a message for my therapist and she does call me back and we talk briefly and then decide if I need to come in earlier than scheduled. I've only had to do that once since I started in November, so I feel pretty proud about that accomplishment. I'm also proud that I am doing this completely unmedicated. I could very easily have gotten meds, but I chose not to have them. I want to be able to work through this with my brain unaltered.

Of course, one could argue that you put your son on meds, why aren't you on them? Nathan was struggling socially, behaviorally and emotionally. He could not control his brain and does not have the skills that I have as an adult. If he gets to that point where we feel he does not need to be medicated then yes, we will go there. These improvements are happening organically, without the help of the meds. The meds do not make the choices he makes. He does. That's the important thing. He is actively making positive and mature choices. And he's doing his mom proud.

Another thing he did that I am so proud of?

He was in a production of "Annie" as Sandy the Dog. That's his classmate, Bailey, as Annie. He stayed focused and attentive throughout the whole process. Believe me, there were days I wanted to choke him because of stress, exhaustion and little down time for the both of us. But there was always love behind that stress, and understanding and forgiveness. He would say after a performance, "Mom I feel proud!" I was even more proud than he could ever imagine. I was in it, too, as Miss Hannigan.

Here I am, all menacing as the evil rotten Miss Hannigan. This was from the photo shoot where it was over 100 degress that day. You couldn't tell because we were all laughing too much. This is the role that I almost didn't try out for because I was terrified to audition. I was afraid to be me. I was scared to be me. And my son, my voice box from the Universe told me, "Mom, focus on the song, not on the people."
Sage advice from my 9 year old, I tell you.

And if you ever need advice, or want to bounce some ideas off, email me at aspergerninja@gmail.com. I am available for counseling sessions over the phone or via email. :D

You Better Work!

2011-06-11T21:11:00.000-04:00

Nathan has been having a hard time transitioning from school to summer. This is not new, as every year he has experienced this crazy making time where his moods just seem to shift out of no where. This year seems to be more difficult, as the events are becoming more frequent as we get closer to the end.

Today as I was coming from my work, having to deal with a foul mouthed 6 year old who was spouting swears to anyone within ear shot; I drive up to get Nate. He's screaming and howling, holding onto the gazebo and hitting his head against it. I'm immediately zoned in and trying to get his attention. The person who's watching him is clearly overwhelmed and not sure what to do. I use the "firm" mom voice to get Nathan's attention. He's able to look at me and he's sweaty, filthy and tearstained. He starts a deep moaning sound as he cries. He's screeching how he "sucks" at this game and how he'll never get it right and how he should just "kill himself forever".

Fortunately, we had to go to see his therapist, which was so needed. He's been so off kilter lately. Lots of issues at school, and at his afterschool program, usually involving a meltdown of some degree. I went through all the possibilities in my head, wondering what the hell was the problem. As I reviewed all the past issues and his demeanor at home, I came to the conclusion that it was purely behavioral. Nate was having full blown rotten awful behavior. It was affecting him at school, at home and pretty much anywhere else he was. And it needed to stop.

I saw his work ethic at school, which was really poor. He was doing the absolute minimum required, which was like scraping the bottom of the barrel. He wasn't practicing his recorder. I know I know, who does, but he was saying, "Well it's not HOMEWORK, so I don't have to do it!" and doing the epileptic seahorse routine he does when he has to do something he doesn't want to do. His writing prowess had diminished, as he was not practicing at home, and not having a lot of opportunities to do it here. With no 1:1 at school, and him not the best at keeping track of his work, it's no wonder I was left in the dark half the time.

Home wasn't much better, as he would roll his eyes at any little request. Asking him to pick up his laundry would get me a dramatic intake of breath and then him saying that I was the worst mother in the world. Giving him a talking clock to remind him of the end of video game time would have catastrophic consequences, where I was truly worried my neighbors were thinking I was tearing Nathan apart with my teeth.

Nathan was expecting the world on a platter. And for the most part, the world would give it to him. But he needs to know that is NOT the case. He was making my job as a parent REALLY difficult. The Mom Hammer had to come down.

In the car on the way to therapy, I had the hardest conversation I've ever had with my son. I told him that I loved him so much, and that I wanted him to succeed. In order for him to do that, he had to put in the work. When you work at something, you will succeed. When you do your work, you get privileges. When you put work into practicing a skill, no matter what it is, you will get better. I told him that his work ethic was poor. I told him that he needs to learn how to do things on his own and that the best time to do it is now, while he's young. I told him that if he continues on this path of doing the least amount of work possible, that he will get the least amount of results possible.

I told him that he will fail. Fail a whole bunch. I told him that life is hard and sometimes life really SUCKS. I reminded him that he needs to make these good choices now, which will help him during the times when life sucks. I told him that regardless of all the rules & regulations, I loved him and was proud of him.

His therapist was very sympathetic about our situation and was very patient with Nate when we got there. We had a good conversation about what our expectations are, and to use our words when we need to communicate to each other. We left in a much better place than when we started.

I know there will be so many more times like this. A broken record for when he gets older, and emotions get more complicated. I know that he loves me, even when he says I'm the worst mother ever. It's hard juggling so many occupational plates at once, when I want it to be so easy. I will never have that Easy Blue Plate Special. Nobody will. We all better work, like RuPaul. With a little faith and a lot of fabulousness, we can succeed.

Hole-y Roller

2011-05-19T07:58:00.001-04:00

I am having a problem with Nathan's clothing. He seems to like to rip it. Alot. I'm not sure how he's doing it, but from what I can gather, he's doing activities which will legitimately give him a rip in his pants. Then, he will continue to rip and tear and shred his jeans until there is a hole big enough to drive a truck through.

I'm okay with small holes. That's wear and tear, that gives your jeans character. I'm not okay with built in airconditioning or what makes it easy to see what color underwear you have.

I'm thinking this is stimulating behavior. He did it the other night. I sent him to school with a pair of pants with a teeny tiny hole. This was fine, I figured, that's not going to migrate into a moon size crater, right?

I pick him up from afterschool and the leg with the hole had a HUGE rip in it, like a rift in the space time continuum. I was like, "What did you DOOOO?!?" He said, "I slid across the floor like THIS!!" I know that wasn't the whole story, but it gave me some idea as to why he's ripping up his clothing.

A little later, we had gone to Dunkin' Donuts to get a little something to eat before rehearsal for Annie. The lady gave us some extra munchkins. (By extra, I mean 15) and I left it in my bag. I told Nathan not to eat them all.

What. An. Idiot. I. Am.

As rehearsal progressed, Nathan was running back and forth to my bag and gleefully eating munchkins one by one. I had no idea, as I knew he was going in the bag for food from time to time, as is his habit. I always pack good snacks for him to eat when we're away from home. I thought I had hid the munchkins well. Yeah, right. That kid has the ability to smell sugar like a heat seeking missile.

When rehearsal ended, I looked at him and his eyes were as glazed as the donuts were, which were now in his stomach and his pants now had TWO holes. I could only imagine that the extra sugar made him anxious and stimulation seeking and he literally tore himself to calm.

I don't know how to address this yet, as I'm finally seeing WHY he's doing it. I need to figure ways to deal with it, and not always by buying him new pants. I mean, I have to buy him new pants, but he needs something else to help him with this need to shred stuff.

I'm happy to take any suggestions! Leave comments & tips below!

Feel The Love

2011-05-11T10:00:00.001-04:00

"Jealousy is simply and clearly the fear that you do not have value. Jealousy scans for evidence to prove the point - that others will be preferred and rewarded more than you. There is only one alternative - self-value. If you cannot love yourself, you will not believe that you are loved. You will always think it's a mistake or luck. Take your eyes off others and turn the scanner within. Find the seeds of your jealousy, clear the old voices and experiences. Put all the energy into building your personal and emotional security. Then you will be the one others envy, and you can remember the pain and reach out to them."

Jennifer James: Cultural Anthropologist and Motivational Speaker

I have been having transitional pains lately. It's that time of year where we're preparing for the summer. It's also time when I seem to struggle more with my own self worth. I think it's because I don't have full time and full season employment. There is always anxiety there. It has gotten better over the years, but it still haunts me, reminding me it has never completely left.

I have been jealous, too. Jealous of others. Jealous of people's accomplishments, their successes, their haves and my have nots. I am always happy for them, truly. But there is that side of me, that little corner of me that is secretly Hulk colored of them. It's something I'm working on. Most days are pretty good, but the other day, it was hard.

I had an audition for a show. A musical. I consider myself to be able to sing decently. Nothing ear splitting, but not Idina Menzel either. I can carry a tune in a bucket. (haha!) Earlier in the day, I had gotten word that I had not gotten into a production that I felt I was a shoo in for. I had seen who was cast and started immediately dumping on myself. Telling myself I was no good and why do I even bother doing these things and I ended up in a dark and sad place. I was swirling in my own created misery when I recalled The Daily Love. It's a great website where they guide you how to love yourself. Really. I thought it sounded hokey at first. But it has been quite a boon to me these past few weeks.

As I am recalling this, and the wisdom that has passed to me, I said, "You know what? It's all good. This event doesn't own me. This just opens me up for more opportunities." I couldn't even BELIEVE that I had said that myself.

So, to go back a bit, after this happened, I went to pick Nathan up. I told him I had an audition that night. He said,"Are you nervous?" I absolutely was. I was nervous that I would forget the song, nervous I wouldn't be able to sing as loud as I could (as my throat likes to get really dry and constrict right before I sing). And I was having some serious self image issues (I had recently had a very small chip in my bottom tooth and my hair has been appearing to me to be even thinner than it has in the past). I wasn't in the best or most positive of places I needed to be.

I told him I was nervous and he looked at me and said,
"Mom, focus on the song, not on the people. And if you screw up, that's okay because you will do better next time."

It was strange to be on the receiving end of such sage advice. I knew Nathan was right. It was still hard doing it, and I could have been better, but to be honest, I did better than I thought I was going to. It was 60 seconds of my life that I spent literally all day perseverating on. I haven't found out if I have gotten a part yet, but I am no longer worrying about my performance.

Nathan had some problems yesterday, too, with his self worth. His desire to be perfect consumes him sometimes. He feels that if he is perfect, then people will like him. When I picked him up yesterday, his site director told me that he was very sad when he got picked up at school, something about not knowing the answer to a trivia question. He was crying and inconsolable on the bus. Once he got there, he was upset again when trying to do archery and not hitting a bullseye every time.

When I was talking to his site director Nathan started to say, "No, no, no! Everything is fine. I don't want to talk about it." I stressed to Nathan that he was not in trouble and that I wanted to find out about his day because I cared about him. He fell the floor and did his seahorse imitation, where he curls up on the floor and has his head and chin tuck together. I assured him he was not in trouble and managed to get him up off the floor.

As we walked outside he said, "Mom, I'm sorry I'm not perfect." I said, "Buddy, I don't want you to be perfect." He asked, "Why?" I replied, "Nobody is perfect honey. I don't want you to be perfect. I want you to be you."
"But don't you want me to be the best at everything?" he inquired.

"No, buddy, I just want you to try your best. You don't have to succeed at everything to make me happy."
"So you still love me even though I don't hit a bullseye?"
"Of course I do. I love you no matter what."

We both have been jealous of other people's accomplishments and wanting to be "perfect" and "special". We both suffer from self doubt and self loathing. Part of this process is to try to show by example. I know I have been struggling with this my whole life. I don't want him to stay on this road like I have. I have changed that path and am working on being more kind and loving to myself. I hope that it rubs off on him, too.

The Art of Failing

2011-05-02T22:19:00.001-04:00

April Vacation has come and gone and let me tell you....My darling Nathan is a handful on a good day. That week, Nathan was a saint. This last vacation sent a few of my kids into a froth of an epic proportion.

Now, we are not a special needs program, but our population is about 1/3 SPED. A few of our kids have diagnoses (Autism, Asperger's and quite a few with ADHD coupled with OCD and ODD) and a few who should have one.

I know that as a parent and a special needs advocate, I am perhaps on a different level of preparedness for my child than others. Granted, Nathan had the extra advantage of having me around that week, but to be fair, he RARELY if at all came to me for help or if the Drama Llama reared it's ugly head. I had a handful of children with bucketloads of issues, that could have been easily prevented. I'd like to pass along a few tips, a primer if you will, if you child has some challenges or even if they don't, how to NOT set your kid up to fail.

SEND THEM WITH ENOUGH FOOD TO FEED 3 CHILDREN:

On an average school day, kids will eat between 75 to 85% of what their parents pack them. On a vacation day, they will eat all of it and will scour the floor for crumbs or do a pitiful interpretation of "Oliver Twist". Kid's energy can skyrocket when out of their normal environment and routine, so plan accordingly.

DON'T PACK THEIR LUNCHBOX LIKE IT'S A TRICK OR TREAT BAG:

No joke, a child with ADHD had in their lunch filled with 2 mini bags of M&M's, chocolate covered pretzels, chocolate chip cookies, a chocolate milk and a turkey sandwich. Take a WILD guess which one they ate first. Now, I know you're saying, "Their diet is limited, they will only eat certain things..." My Aunt Sis, who is 83 and will kick your ass at Scrabble says, "Kids will eat if they are starving, no matter how picky they are". Nate is a picky eater and a picky sensory eater. However, we have found a variety of things that he likes to eat: low fat string cheese, protein bars and 100% juice are all quick, sensory friendly and pretty darn healthy in comparison to the chocolate diet this poor kid had. All that sugar revs them up and makes them have so much energy that they literally cannot control themselves. Be ye warned.

PS: Also, make sure your child doesn't have the extra sugary snack that they may give to said child who doesn't handle sugar well. When the ADHD sugar crazed child is asked where they got their snack from, they'll say, "OH! So and so gave it to me!" Be ye warned, twice!

PPS: Okay, I sound like the sugar police. Don't get me wrong. Nate has his share of sugary things. But it's in moderation and it's not late at night. He has lots of protein to balance the bad stuff he may ingest. I'm suggesting keeping the candy aisle out of the lunch box. If you must add a little something, a small piece of dark chocolate (which is lower in sugar and good for them with all those yummy polyphenols) does wonders.

DO NOT PACK MEDICATION FOR YOUR CHILDREN TO DOSE THEMSELVES:

Same child with ADHD shows me a baggie with a small white pill in it. I ask, "What is this?" They say, "Oh, it's my Concerta, my Dad gave it to me to take when I got here." It was 11 AM when we discovered the pill, the child does not have the proper documentation for us to dose them with and we know it will be a challenging day because the child's parent neglected to give them their meds at the proper time. And to top that off, the child is 7 YEARS OLD, who can't and shouldn't be held responsible for remembering to take his Concerta. Please, remember to medicate your child before the day starts.

KNOW YOUR CHILD'S LIMITS.

A child on a vacation day may not behave the same than on a school day. Feelings, emotions and other situations may be heightened, which can lead to fights, tantrums or meltdowns. One child was literally hurling themselves into a group of other children because they were tired, anxious and sensory and attention seeking. If you know your child can't handle a full day, please make arrangements to have your child picked up early. I know alot of parents work, as do I. I know it's hard to find quality child care and even harder to have a back up plan, but do it. It's necessary.

Alright, I'm done with the soapboxing. I'm not saying that I am perfect or Nathan is perfect. I'm encouraging you to know your children and to prepare accordingly. Nate gets super hungry on a dime so I throw 4 or 5 protein bars in his backpack so he always knows he has a little something to snack on. I make sure he takes his meds on time. I have him get his own things ready so that he knows what he has and what he doesn't. A little prep work goes a long way to help your children help themselves so they won't come home to douse your walls with grape juice, glitter and shaving cream.

Just saying...

Independence Bound

2011-05-01T22:35:00.000-04:00

Here is the boy, serving himself up a delicious plate of Spicy Taco Meat (aka ground turkey with Taco Seasoning). He is starting to show me signs of growing up, which makes me proud and sad at the same time. Sad that he is becoming less dependent on me and proud that is he coming less dependent on me. A crafty double edged sword that is. It means I'm doing my job, and a very good job at that. It also validates me that I haven't completely ruined the child.

He's doing more personal grooming without supervision. This is a huge coup. Getting Nathan to bathe without a visit from the Drama Llama is such a boon to me, but with this fantastic addition of him taking the time (and the personal responsibility) of washing himself, dressing himself, brushing his teeth, washing his face and yes, styling his hair is amazing. He's quite the diva in the mirror with his detangle spray and his brush. He spikes it all up in the back and slicks it in the front. I was concerned that he would get picked on because his hair is a little off kilter (Yeah, this coming from me, the girl with bangs that shot up 18 inches off my head in High School), but there hasn't been any complaints or crying.

He's making stronger wardrobe choices. He'd wait until I had picked out everything for him and brought it to him. He would then jump on the bed and proceed to lose all the clothes and then get severely distracted. With the invention of Mom getting laundry done and keeping it stocked (Lord have Mercy!) Nathan has been able to pick out his whole outfit by himself. He still requires a lot of redirection. (ARE YOU DRESSED YET!?!) but at least he's not stymied by my lackluster domestic skills.

He's voicing when things bother him. My mother would say to us when we used to aggravate her that she would sell us to the gypsies. (Most kids these days don't know what gypsies are) I, of course, used this with Nathan, because....well..it's something I grew up with and we've joked like that before. A few weeks ago he told me that it made him uncomfortable when I said that and asked me nicely to not say it anymore. For that kind of maturity and kindness I would have bought that kid the Space Shuttle.

Therapy is still therapy. Most days he hates being there because there is lots of talking involved. Once we get past the talking he has so much fun, but he always remembers the not fun part. He likes to blame his faults on his Asperger's like, "Mom, I forget things because of my Asperger's." or "I didn't do my homework because of my Asperger's" But, I gently remind him that he is not limited by his Aspieness and that he has to work a little harder than others to achieve goals.

One is practicing. Which he doesn't like to do if it is practicing something he's not interested in. Like the recorder. He got sassy a few weeks back at his music teacher and I made him apologize.

He whined, "MAAAAAAAAAWMMMMMM! I HAAAAAAAAATE the recorderrrrrrrrrrrrrrr!"
I said, "Now Nate, we don't use the word hate in our house."
He said, "Okay, I REALLY DISLIKE the recorder."
I said, "I know it's tough, but I want you to practice it like you practice anything else."
He said, "Mom, it's so hard! I can't get my fingers to do what my brain tells them to do!"
I chucked to myself. I then said, "If you keep working at it, then your brain will know that pattern that it needs to tell your fingers what to do. If you give up on the first try, how can you expect your brain to know what to do?"

His eyes lit up and he said, "MOM! THAT is AWESOME!"

And there he is, rocking that recorder. Homework and practicing things at home has always been thorny. When he gets home, he's so tired of using his frontal lobes that it's hard to get him to fire them up again. Yet, somehow he managed to scrape a little energy left and practiced a bit here.

I have been away from here for a while and I have been knee deep in a bunch of different things! School, work, plays, Nathan, life, etc. It all keeps me busy, but truly, I am taking care of myself. I promise that I am doing very good self care. Nathan and I are fed, happy and healthy. If we aren't, then believe me, we both get off the ride and take a breather.

He's happy to be here. We moved 1 year ago this week. He said, "Mom, I like where we live now. I didn't like my old school or our old house. I like it much better here." He's well adjusted, more outgoing, more talkative. I didn't know how or if he would register the change, but he has and I know now I made the right decision. We are both happier here. I think that has attributed to the both of us making such big strides in our lives. And that is what matters.

What Do You Believe?

2011-04-04T09:52:00.001-04:00

A few weeks ago, Nathan asked if Leprechauns exist. I figured this was a loaded question, as he likes to play this game with me. I asked him, "What do you believe?" He said, "I'm not sure", which was then followed by him announcing that Santa and the Easter Bunny did not exist.

I was a little shocked, as I had managed to get him to 8 yrs old with him still having some grasp on that part of his childhood. I remember I was 8 when I found out that Santa did not come down the chimney and bring you presents. It was late on Christmas Eve, and I got up to go to the bathroom. (I was not a nighttime bathroom kid, so this was unusual, even for a big holiday) I recall my oldest sister helping my mother put presents under our tree. I was horrified, and felt betrayed and really stupid. How could I have fallen for this sadistic parental torture? I was about to wake my youngest sister up, to tell her what I had discovered, as she HAD to know what I knew. I stopped myself and said, "No, she needs to find that out for herself." I was pretty proud of myself that I didn't blab this gigantic truth to her.

Now, being the Mom, and wanting Nathan to have these same mythical creatures in his life, I have repeated the same patterns. However, now that this existential question has come into play, I've had to take a look as to how I approach having him consider what he believes and what I believe.

I told Nathan that his name means, "Gift from God." or more accurately, "God Has Given." which I completely believe is true. I had two miscarriages before Nathan was conceived. When I finally did become pregnant with Nate, I was dubbed "high risk", as I had 2 miscarriages and severe cervical dysplasia when I was 24. I was STRONGLY urged to have ALL of my children by the time I was 30. So, at 30, and in the midst of a high risk pregnancy, I was again, strongly encouraged to get a cerclage, where they sew your cervix closed to prevent premature labor.

I said no.

I continued, "If he's coming out, he's coming out. I won't prevent him either way. I have faith in this baby."

10 days late and after 15 hours of labor plus a c-section, Nathan came into this world happy, screaming and healthy.

So, I tell him his name means, "Gift from God." He says, "God gave me to you?" I explain, "Yes, the Universe gave you to me to take care of you and love you." I don't know if he can grasp that or if he believes in it, but he certainly enjoys the concept of being considered very special.

He's asked about God, and Heaven and what happens when you die. There's that moment in your life as a parent when you have to REALLY think about what you truly believe and how you are going to convey that to your children.

I thought about all of this, and about these fairytale figures who come into our homes and how they affect us. I thought about it this morning as I walked Nathan to school. I told him he had to get his hair cut because Easter was coming.

He asked, "If I don't get my haircut, the Easter Bunny won't come?"

I said, "No, he'll still come, but I want you to look nice." It's the one time of year I can get him in a dress shirt and a tie. I revel in his dapperness.

He asked, "Do I have to believe in the Easter Bunny for him to bring me stuff?"

He was getting to the point where he felt he had to believe in something or someone in order to get the reward. But then I started to consider, why am I doing it? Was it tradition? Because you're supposed to do it as a parent? Is there a bigger lesson that I was missing?

I considered it and thought that the reason we believe in Santa and the Easter Bunny has religious undertones to it, which is true. However, since we're not strictly one religion in our house, I feel that it is teaching us moral lessons instead of specifically religious ones.

I asked him, "Well...do you think that even if they don't exist, do you feel that they have taught you how to be a good person, and to be good to each other, and to love and respect another?"

He nodded.

I said, "Then you do believe."

He said, "So, even if I don't believe in them, but I like what they teach me, I'll still get Peeps?" I laughed and asked, "Do you only believe to get Peeps?" He giggled at me and said, "NO! It's hard to believe in something you can't see."

I nodded, "Yes it is. It's called Faith."

Faith is something that we have that we can't see or touch or hear. But we have it, and we hold on to it. Faith has gotten me through some very difficult and dark times as of late. Faith was my mother's name. She's been gone almost 20 years and I know she looks down on me in some way. During my show last week, I was checking myself in the mirror when a flash went across the glass and I saw my mother's face. It was hard to tell, as we look very much alike, but it was her, like she was reaching across the ether to let me know she was there.

I want Nathan to believe in greater things, but I want him to believe in himself. That requires faith. And I have it and I will give it to him. I have faith in him.
In the meantime, we will continue our deep discussions about the existence of these childhood characters and how he can still get candy filled eggs.

Drama Lessons

2011-04-01T12:01:00.000-04:00

It's been a rollercoaster here at the hacienda. The past month has been a whirlwind of activity, mostly surrounding me. Nathan has spent alot of time with me during rehearsals, which in part is due to me wanting to exposing him to other people. The benefit of this particular show was that I was only on stage for no more than 10 minutes at a time. When I wasn't on stage, I could spend time with Nate. Another mother brought her child and Nate had a friend who was his age who he could hang out with.

He was incredibly well behaved during this, which I know is not his first, second or third choice of things to do. He even ushered on opening night, making sure that no one got into the reserved seating section without a proper ticket. He was polite to others and even drew pictures for them. They were pictures of dinosaurs tearing each other apart with copious amounts of blood, but hey, he was interacting and that's what matters.

One night, Nathan watched me die on stage. Now, to be fair, he has seen this before and he knows that it is not real. We've had many discussions about people pretending to die and that it is only pretend. This particular death was a strangulation and then a stabbing, and I dramatically fall down dead. After we were done with the scene, Nathan came back stage looking for me. He asked me, "Mom, did that hurt when he strangled you?" I explained it to him that at no time was I being hurt. I showed him how he held his hand close to my neck, but never held it and that I grasped onto his wrist, so that it looked like I was being strangled.

Nate nodded his head and said, "Wow, Mom, you had a really good death!"

Yes, I did. And my son helped me be me, to which I am very grateful for.

Getting In Trouble

2011-03-18T12:46:00.000-04:00

I think I'm going to be in a lot of trouble. First of all, I haven't posted in over two weeks. I know I have promised to myself to keep up with this, but alas, even the best laid plans go astray.

Next, our school district is facing severe cuts, and guess what, SPED is threatened. So, me, who normally wouldn't get involved in those kinds of things ...well....I got involved.

I was asked to speak in front of the School Committee and argue against the districts recommendations for revisions in SPED policy and funding.

It's on April 7th.

Wish me luck.

More Ninja to come. Promise & Pinky Swear.

Eat Chocolate

2011-02-27T22:30:00.000-05:00

This past week I haven't been blogging. Or doing much of anything for that matter. I'll tell you why...

I took a vacation.

I know! I KNOW! HOW could I have taken a vacation? How DID I manage to take a vacation? I just did it.

Well, Nathan was going to Florida with his father and stepmother for most of the week. I had taken the week off from the Y to work at the ARC. The ARC's sign up was small for vacation week, so it kind of happened serendipitously.

I honestly didn't know what I was going to do with myself. I knew that I needed to do a whole bunch of NOTHING. I needed to recharge, refresh and press that reset button.

There were times where I felt guilty. For taking time for ME. The voice of despair in my brain was screaming as I slept very much past my alarm, or did not go to work, or did not do my dishes for DAYS. But I learned to ignore it. Or at least I learned how to pat it on the head, give it a drink of water and send it to its room.

I did shopping therapy, which was delightfully indulgent. Trying to take Nathan shopping for anything that doesn't involve him directly is not on my top 10 list of things to do. Ever. So, being able to dwell over little bits and baubles and jewels and shoes and makeup satisfied my tiny but long neglected need to be a super girly girl.

I ate in restaurants and didn't wolf my food down my gullet like it was an immunity challenge on Survivor. I spent mornings in my pajamas, eating chocolate and goofing off on the internet without the dulcet tones of my son's whining asking for the computer. I ate whatever I wanted, but wasn't crazy about it. If I wanted pizza, I got it. If I wanted salad, I ate it. I had relatively balanced meals, along with completely decadent desserts. I was a shameless carb whore and I loved every microsecond.

I got a little time away, and spent some time reflecting on my world. I took a moment, gazing out on the horizon and wondered about my life, my son, my struggles, my faults, my triumphs. I realized that I need to remind myself of how awesome I am and that it is perfectly okay to do that. I spent time with friends, ate more chocolate, had impossible conversations. It was just what I needed, what I had always wanted. And I don't regret it.

This is for you, parents and care takers. It is very very easy for us to neglect the most important person in our lives. US. We need to be in the best shape, not just physically, but emotionally and spiritually. If we do not subscribe to self care, our complex and intricate dance of plates and balls that we juggle and spin will collapse upon us like the weight of heaven.

Eat chocolate. Eat cake. Eat fried chicken. Walk in your pajamas. Go to the movies in a fantastic hat. Paint, read, sleep, create, dream, do yoga. Do what you need to do to get your creative juices recharged. Just do it. Please. Even if it's one hour. That one hour will give you so much back to your life. And to your soul. It is delicious and incredibly satisfying.

Being Present

2011-02-16T07:24:00.000-05:00

When I'm asleep, it needs to be dark. Not just lights off, but major league goth club type dark. I have coverings over my windows to block out ambient light. Additional light truly drives me insane. I like to sleep in a "nest" of pillows. One on each side of me and two under my head. This gives me a boundary so I don't fall off the bed and also, makes me feel safe and secure.

This morning, Nate woke up early and came down to "snuggle". When he wakes up before me, he likes to come downstairs into my bed and "snuggle". Snuggling means he jumps into my bed, hogs all of my carefully arranged blankets and takes my pillows. He will then proceed to wriggle around the bed and stick his little rump in the air. Sometimes for fun, he'll breathe heavy through his mouth. This is his way of waking me up so that I'll get out of bed and turn on the Wii for him. This doesn't always work on me, as I have learned his scheme. I usually tell him that he can go upstairs and get himself something to eat while Mom is attempting to revive from the sleep of the dead. He's a little older now, so I know I can trust him for about 3o minutes without worrying he'll set the house on fire.

Today, when he came down, he asked if he could snuggle and I said yes. He got right in next to me, but he didn't do all the normal wake mom up activities he usually does. I waited for the wiggle worm. I waited for butt aerials. I waited for the labored breathing. All I heard was a quiet steady breathing, not unlike him sleeping...hey! Was he asleep? Really? In my bed? Is it possible?

There was Mr. Sheridan, sleeping like an infant, snug next to me. I couldn't believe that he was there. It was so unlike him. It suddenly hit me that this was a rare moment in time, it could also be a rip in the space time contiuum, so I knew I didn't have a minute to spare. I attempted to enjoy having my boy sleep next to me.

Moms of children this age remember what is was like to have your tiny newborn sleeping against your chest. It is an incredible bonding experience. You feel all the love and the magic between you as you watch your little bundle of awesome breathing. You are blissful as you, too, are transported to dreamland with your sweet baby close at hand. I recall fondly how Nate's miniature rump fit perfectly into the palm of my right hand. He loved being held as an infant. We spent many nights snuggling during late evening feedings.

Nathan is now 80 lbs, 4 ' 8" and is all legs & frenetic energy. Getting him to stop for a hug is like the world falling off it's orbital axis. Long hugs are out of the question, as they take time away from "stuff". There are days when I yearn for some delicious nap time with my boy, the both of us just dozing on the couch or the bed, sleeping peacefully during a lazy afternoon.

That hasn't happened since Nathan was 2 1/2.

Pouncing on the experience, I quickly wrapped my boy up, burrito style, in his blankets and attempted to sleep myself. I still had a good 30 minutes of sleep left. I wanted to enjoy this.

And my mind factory kicked into gear. All the cogs and wheels and pulleys and levers started moving. The brain was in motion. Thoughts had to be thought. The day had to be planned. What was I forgetting? What is due today? Don't I have an appointment? I ran through Nate's day in my head. It's Tuesday, no gym, will he want school lunch, does he have clean clothes, boy that child needs his hair cut.......on and on and on.

All of these thoughts are swirling inside my head like bats. I tried mentally shooing them away so I could actually experience time with my child. I was plagued like Johnny Depp in "Fear and Loathing in Las Vegas" where he says, "We can't stop here, this is bat country!" except I don't take psychotropic drugs.

I realized a little later that what I was trying to do was meditate. I was attempting to be there and be aware of my breathing only. I wanted to experience this tiny moment in time, as it was important to me. My overactive brain would not stop for a second and it was, I felt, preventing me from having this mini nirvana with my child. I started getting mad at myself for not doing better, for fighting with my anxiety inside my head at 6:45 in the morning, when the whole time, my charming child is snoozing away next to me. After I stopped self deprecating for 5 seconds and came to the conclusion that the more I argued with myself the more I was missing this opportunity, I held Nathan a bit closer, nuzzled into his big mop of boy hair, and breathed. I was transported, if but for a moment, back to his infancy.

But not even there, truly. It was more to a place where we bonded right after he was born. I had a C Section and didn't hold Nathan for almost 4 hours after the procedure. There are those stories where mothers say they did not bond with their children well after a c section and that their relationship was never the same. I had that fear as well. I had pushed and pushed for almost 3 hours before an emergency c section was scheduled. I had felt sad that I couldn't bring him out on my own and felt like a complete failure. When they brought Nathan to me around 10 PM, I had no idea what to do. This was the first time we would be introduced. What if I failed this too!? I said to myself, you know, all he needs is love. I picked him up gently and brought him to my chest. Nathan immediately snuggled next to me as I held him to my left shoulder. He just breathed. As did I.

This reminds me of an Erma Bombeck poem, "If I Had To Live My Life Over" where she says in it:

There would have been more 'I love you's; more 'I'm sorry's.'
But mostly, given another shot at life,
I would seize every minute...
look at it and really see it ...
live it ... and never give it back.

That's why they say the present is the best place to be, because it is such a gift. I'm trying to live that life, Erma.

Do You Judge?

2011-02-14T13:00:00.000-05:00

Last week, Nathan came up to me in a flurry of hugs and questions. It sounded something like, "Momireallywantmyfriendtosleepovercanipleasepleasemomireallywanthimtosleepover?" I had to tell him no, unfortunately. I explained that a sleep over is a special activity and that I would be happy to have his friend over another day.

I picked him up a few days later and discovered Nathan's friend was 5. I was a taken aback a bit. I truly thought that Nate's friend was his age. I was disappointed, too, but I couldn't really verbalize why at the time. I figured he had finally made a connection and that he would have a friend to spend sometime with. There was a let down when Nathan had gravitated towards someone younger. Nathan tends to play with children who are younger. He feels safer with them. He also knows that they won't judge him. They're all on the same page socially for Nate, so for him it is the perfect social foil.

I started to think why I was judging Nathan. What is more important? Having Nathan being social with kids his age, or having Nathan being social period? I think I was struggling with the age part. I don't want him to be social stunted. I know he still doesn't have a good friend at school that he can hang out with afterschool. He does have quite a coterie of kids that he is friendly with inside of school, so I feel comfortable about that. However, I have fears that parents of these younger children will look at Nathan strangely. I know it looks a little unusual for older kids to play with younger kids. But when I processed it, I felt a bit of my own fears and trepidations creeping into my judgement. And my judgement was flawed.

I shouldn't punish or judge Nathan for not making friends his age. I was forgetting that Nathan is making connections with people. That is more important right now than him fitting into some "norm" that either society or I may put in place because I'm afraid of what others might think. Nathan is sweet and kind to kids, of all ages. He does take it easy with the younger ones, almost like a big brother. (Perhaps this is why he keeps asking me to make a baby?) He shows respect and has manners. He is friendly and outgoing. I wasn't celebrating that and praising his efforts. I was stuck in this age rut. I have since learned the error of my ways.

I'm more focused on him continuing being socially engaging and honing those skills with every kid. He'll be friends with people who are younger and older than he is some day. There is nothing wrong with being a friend to someone younger than you, as long as you are friendly and respectful. Nathan is and Nathan does. That is the ticket to success in my book.

What Makes the Ninja Cranky

2011-02-09T23:01:00.001-05:00

So, I've been slacking in my writing, which I am not proud of. I know that I have had some changes here at Ninja Headquarters which have altered my patterns. I don't have a schedule with which to follow, so I'm writing whenever I have a spare moment. Which is right now. Which is 10 PM at night, after already being up for....16 hours. Nooooot the most conducive environment to the writing muse, who has been more generous in other areas, but not here.

But I'm going to change that.

As of today, every Wednesday & Sunday you will get a new post. I figure two posts a week is decent enough and gives me timelines. I work better under pressure. If I don't challenge myself, then I will slack like I have been. Also, if you kind readers keep me on task and tell me I'm a horrible writer for not updating, guilt is also a wonderful motivator.

However, I'm going to rant today, because I feel the need to. Here are a few things in my Aspie/ADHD filled life that drive me crazy.

You Feel Like You Don't Belong In Your Child's School:

I'm getting this feeling lately, and I don't know why. It's hard to put my finger on, but I'm not one of the "popular" moms, or one of those moms that hang out with other moms. I don't know if it's because I looked at someone the wrong way or perhaps I don't know the secret handshake. Every time I try to sign up for something to volunteer my time, within minutes the opportunity is gone. And with Nate's recent school play, I had no idea who to contact for helping out with the play and I had residual guilt for A) not asking and B) seeing how many parents were involved. Yikes! Get off the merry go round of shame, Mom!

My Monthly Bill Gets More Complicated and Painful

I swear on all that is holy, I don't know what deity I may have offended, but as I have gotten older, when that phase of the moon occurs, I am convinced I am 1/8 Werewolf. I am barky and cranky and moody. I am slovenly and have a hair trigger temper. I feel like something is trying to escape from the inside and is clawing and chewing it's way through. My poor child has to endure this transformation and all I can do is apologize and say I don't feel good. Some months there isn't enough chocolate or salt & vinegar chips to calm this beast.

My Child Has a New Annoying Habit

I love my boy. I do. He is the light of my life and the apple of my eye. But this new habit is so annoying and grating, its like fingers on the chalkboard in Satan's classroom. He whines. On an epic scale. Like it's his job. As if he was training for it like an Olympic Sport. Oh, my God In Heaven. In the past two weeks, every single solitary time he doesn't get what he wants, out comes the over dramatic whining coupled with pitiful faux crying. And don't I look and sound like the worst mother of the century for consistantly saying NO? Of course I do. I'm the Wicked Witch of the West amped up the the 9th power. I also feel the part lately because my darn shoes are too loose and my feet are sore. Where are my ruby slippers?

"I will make Nathan miserable & cranky! Fly! Fly!"

Parents/Doctors/Freaks Who Are Out To Scare You

I've had a few people this week try to shake my foundation about things I should be more aware about, things I should be doing, things I should be on top of in regards to Nathan, his IEP, my life, my schedule, etc.

I haven't gotten this far in life by being cute and adorable, but it has certainly helped. I got here because I'm resourceful, I'm smart, I'm sassy, I won't take no for an answer, I am kind but firm and I'm not afraid of anything. I'm a single mother who works multiple jobs, goes to school & maintains a 4.0 average, writing reports for both school and work, implementing curriculum, taking Nate to appointments, doing hands on homework every night, rehearsing for a musical, helping with my business partner's theater company, being there for Nathan emotionally, physically and psychologically and making sure at least 85 percent of his meals are homemade. I'm pretty awesome. I can always be better and certainly strive to do so, but I do not scare easily. I take on all comers with grace and with ammo. Just try to shake this tree.

I may not do all the right things when it comes to marketing or tweeting or what have you. I don't have a cool website with awesome graphics and buttons that match. I don't have a sponsor page, don't know the first thing about it. I haven't had a contest. I haven't had guest bloggers. I haven't had items sent to me for review. I don't spend every single solitary moment making sure that Nathan is getting all of his needs met at that instant. I don't have a support group, but I think I might like one. I don't keep up with the writing, and that has truly bothered me and I'm addressing that. Writing to me is important. It helps me deal with the emotional dust that build up and blurs my vision. I do know that I'm pretty darn good at helping people and people feel comfortable coming to me and asking me for assistance. I want to do that in real life. Part of that is this blog. Part of it is me going back to school for Social Work. Part of it is trying to serve my community and the ASD/ADHD community in the best way I can and I haven't figured that out quite yet. What I do know is that this will continue in whatever manifest I deem is worthy of my mind and my soul. Right now this is it. This is me. Raw, unfiltered, rare and amazing. That's the kind of ride I'm offering at this Life Carnival. Stay on or get off with no regrets. You are always welcome here.

Practicing Patience

2011-01-30T19:20:00.000-05:00

So, kids with Asperger's don't do well with waiting. For anything. Nathan is no exception. If Nathan asks me to get him something to drink, I'll say, "Give me a minute, buddy." 10 seconds later, he'll repeat. "MOM. I'd like a drink please." If I don't get up right away, he'll continue to ask me until I'm worn down like a grindstone.

This happens on a daily basis. The worst time is after I've sat down on the couch after getting us settled from coming home and the minute I take a sip of my beloved Diet Coke Nathan will chirp, "Mom, I'm hungry!" I get up in semi frustration, not having one drop of Diet Coke pass my lips.

I see this with my ARC kids, too. They want you to do everything for them, right now. It's because it's what they are used to. They're not accustomed to waiting or not having everything done for them. It's not that the parents are bad, as I am guilty of this, too, a degree. It's that it does tend to be easier to do these things for your children. I've been trying to teach Nate to be more self suffient, to have him be more organized instead of doing or packing things, "just in case". I feel he needs to know how to do those things on his own.

A few weeks ago, we had a snow day (we've had a lot of snow days!) where I could take Nate with me to the Y. He didn't want to go swimming, which I wasn't too worried about as he had his DSi with him. When we got to the pool, he didn't want to use his DSi. I was thinking, "Is he just bored with his games?" I almost got into an argument with him. I didn't want him to be bored, because boredom causes him to be miserable and he becomes the physical manifestation of a Salvador Dali painting. He whines and moans like an ancient farm tractor. I was insisting he use his DS and he said, "No, Mom, I am practicing." I was very confused. "Practicing for what?" I demanded. "I'm just practicing, Mom."

I didn't fight him on it. I let him make that choice. And he sat. And sat. And sat. He didn't complain or make any huffy noises like he normally would do when he's bored. He just asked me how much time he had left. He seemed to asked in 15 minute increments. I was still very confused, but he wasn't beyond emo miserable, so I didn't question him about it.

On the drive to his Dad's house that night, he did the same thing. In the car, where he's on the DSi like a fiend, just looked out the window at the cars whizzing by. I asked him again what he was doing, "Mom, I'm practicing." I asked him if he wanted to listen to music. He agreed and he put on his favorite CD in our car, The Cure Mixed Up. (It's true, he loves it. Especially song 6 "The Forest") He continued to gaze out the window. He would ask me how long it would take to get to his Dad's house. I told him about an hour. He said, "Okay." At those 15 minute intervals, he would ask, "How much time left?" Then it dawned on me.

He's teaching himself to be patient.

This was not something that we had talked about doing, or that I had planned on instilling in him in the immediate future. He has always struggled with the concept of time. He still struggles with boredom and the frustrations that it brings for him.

But this was SELF GUIDED. This was SELF STARTED. And did I mention that he's 8? I cannot even tell you what a huge accomplishment this is for him. I don't even think he know's how big it is. That does not matter, truly. What matters is that he's doing it and he's doing it so very well.

He has continued this trend. The usual trips in the car where we wouldn't say anything for an hour have been replaced with alot of CD music, NPR and a little conversation. It's been a welcomed change in our dynamic as mother and son.
Even his therapist was impressed with his progress.

So when you think that your child will never do things on their own, they will come out and just out right surprise you. I look forward to the surprises Nathan has in store for me.

Playing the Part

2011-01-16T23:04:00.000-05:00

Claire Danes just won a Golden Globe for her portrayal of Temple Grandin in the HBO movie about Temple's life. The work that she had to do to get to that space was incredible. As a performer, there is the "work" that you need to do to prepare for a character. Physical, emotional, vocal. They are all essential parts of biting into the meat of the character you're trying to bring to life.

Nathan is in a play, which is going up on Tuesday. I can't even begin to tell you how excited I am for him. It's something he hasn't talked to me about. I almost didn't even know that the play was going to take place until I saw it on our weekly bulletin! But he has been working very hard at it. I ran into his music teacher at school a few weeks ago and she asked me, "Oh, Nathan is your son? He's an AMAZING singer."

Maternal and performer pride just about burst out of my chest. I had a secret desire that Nathan would follow in my footsteps onto the boards. Having Asperger's and ADHD put that in question. I was never sure what direction he wanted to go to. I knew he needed a place to express himself, in a way that felt comfortable and right to him. I would never pressure him into it if he didn't want to. I'm an actor, but not a stage mother. You can't make the unwilling bend to your will.

Nathan told me the other morning that he was nervous about doing his play. He asked me for advice. It was like the heavens opened up and glitter fell from the sky. All I wanted to do was make this grand display of theatrical knowledge and training to my son. It was like the time had COME.

But....

I chose a different way to approach it. I told him that I had theater experience and I might be able to give him a few pointers. Now, to be fair, Nathan has seen me in costume since he was 5 months old. He is very familiar with me being a performer and me being on stage. However, I didn't expect him to connect me having all this experience when he asked for advice. I figured he was just coming to me as a kid with a problem. I didn't need to overburden him with all the other peripherals.

I told him that he should focus on an object across the room if he's speaking to the audience, like a clock or a picture. If he needs to speak to a friend on stage, he should focus on their face and if he's speaking or singing, to speak clearly and with volume, so everyone can hear him.

He was so happy. He said, "Thanks, Mom! That makes me feel so much better!"

I know he has put the work into this, and it's his own work and not due to my prompting or browbeating. He wanted to do this on his own and he has. Don't get me wrong, the idea of him being an actor and expressing himself on stage is beyond my expectations. But it has to be what he wants. He has to find that path and it is my part to help him discover it and guide him to do the work to make it happen.

This clip is right at the end of the movie, and I was sobbing uncontrollably. It's where Temple thanks her mother for "having rules and manners" and sending her to school and how she is still autistic, but she is able to thrive in the path she has chosen because of her mother. Her mother gave her the tools to go on the path she chose. I hope that I have that happen to me someday. Then I will know that I have played my part, and played it well.

Asperger Ninja: DIG THIS!

2011-01-10T12:00:00.002-05:00

Happy New Year to all of you! It's time for another DIG THIS! These are a few things that just are plain awesome and make our lives easier.

Organix Vanilla Silk Shampoo & Conditioner

This stuff is A-maz-ING. I'm a product snob, which I will prove in a moment, but girlfriend needs to stay on a budget. Organix washes my hair in this cloud of vanilla goodness and gives me soft, shiny & slightly sweet tresses. It is usually on sale buy 1 get 1 free, so I take advantage of that. Comes in other addictive scents, like Cherry Blossom Ginseng & Mocha Espresso.

M.A.C. Lipstick in Hot Gossip

Yes, I am a snob when it comes to cosmetics. Sometimes I CVS it, but when it counts, I go for the good stuff, because it's higher quality, I get better color and it lasts much longer. I got a gift card for Christmas and immediately made a beeline to Nordstroms (I only go there for their cosmetic counter) and went to the M.A.C. ladies. I got this fabulous new color for 2011. An everyday pink that can be worn alone, with liner (Whirl is my fave) or coupled with Lip Glass, (Pink Poodle, anyone?)

Minotaurus by Lego

This is an awesome game that Nathan got for Christmas. It's classic Lego where you have to put it together (which I did), but then, it is a game of strategy. It has a six sided die, but two sides are colors. One side moves barriers to keep your man from making it to the center of the labyrinth. Another side moves the Minotaur closer to you! The game is never stale, as things are constantly changing. We have spent a good deal of time together over this game, so I consider that a bonus of any Christmas present. :)

Keeping it Clean

2011-01-09T22:30:00.000-05:00

Nathan has always had problems with taking a bath. During his first washing, he SCREAMED the entire time. Not normal "I'm cold" kind of yelping, this was hard core death metal screaming. He's not fond of the combination of water and scrubbing. It's literally rubbed him the wrong way for years.

We have had knock down drag out fights about getting clean. It would take a good 20 minutes to get him near the water. It was either too hot or too cold. He would dip his big toe daintily in the water, like he was a nymph or a mermaid and then react dramatically to the temperature. My eyes would roll accordingly. Once in the water, I would quickly try to soap up my squirming child without getting any in his eyes or any up my nose. Then his skin would itch after being in the water too long and he would start shredding his skin with his tiny fingers. At this point, he hadn't even washed his hair, so I would have to RUSH it, which exacerbated all anxiety.

Bathtime was NOT fun time.

As we've repeated this over 1000 times, we have learned a few tricks. The biggest trick was to teach Nathan how to do this to HIMSELF. Now, most of you mothers know that doing things ourselves is infinitely easier than having your Aspie spend hours getting frustrated. There does come a time when we do have to teach our children how to do the dirty work of getting clean.

One Thing At A Time:

If you try to get them to do all of the steps all at once, you can kiss any type of progress goodbye. I started with Nate with him just holding the soap. Getting him to do that seemed insurmountable at first, but now, he's doing every step with minimal prompting.

What to Wash First

That's up to you and what works with your child. Nate is a classic wash body and then hair kind of kid. Your child may be different. Whatever will make them comfortable and keep their anxiety down is important. Trial and error (and patience) comes in handy here.

The Dirty Truth

What you wash with is important, too. Some Aspies have texture issues. Some have scent issues. Some have both. What kind of cleaning agent you use can make a difference between a comfortable bath and a what feels like a dip in shredded wool pads. Nate doesn't like scented things, so his soap and shampoo is unscented and dye free. Etsy.com has tons of customizable bath products for kids who are on the sensitive side.

It's Okay To Let Go

No matter how many times we grumble and groan that we HATE giving our child a bath, it's the one time during the day that we're fussing over our kids. It's a bonding moment, and if you're anything like me, you are almost hesitant to stop doing this routine. If you do, then that's one less apron string for your Aspie to hold onto. This is something that they will benefit from, and a skill they need to learn. It's hard, believe me, but now I am thankful that I don't get a second shower each day.

Nathan is a pro at his clean routine. He doesn't even need me to rinse after he shampoos his hair, he sticks his face under the spray like a happy canine. He still hems and haws a bit when he has to go in, but now it's easier and faster because he's in control.

I still have to make his lunch, though. That's a few years off. :)

Asperger Ninja: DIG THIS!

2010-12-28T10:00:00.002-05:00

A New Feature!

Welcome to Asperger Ninja's DIG THIS!

This is the place where I chat about things that we dig! Whether that is music, books, gadgets, toys, games, what have you. They can be ASD/ADHD related, or are just plain cool things that make us happy or our lives easier. It's a myriad of hodge podgy goodness! Let's get started!

Pokeball Bento Box

I feel like Pikachu would just jump out of this incredibly rad Bento Box. It has two layers, to hold enough grub for any kiddo and has a cool factor of about 12. For any Pokefanatic, it is a great conversation starter, too, for those on the shy non engaging side.

UNO Card Game by Mattel

We love UNO, at home and at my two sites that I work at. It is a quick, easy to learn game that is fun with a captial F. Portable, it helps with those who have to wait at a doctor's office or when electronics may not have enough juice. Helps kids join in, too, as they don't have to wait too long to hop in.

Brown Sugar Scrub by Fresh

Our friend, Pamela, got us this great gift set from Fresh for Christmas. It is a body scrub to help Nate with his seasonal eczema. I scoffed at first, thinking a scrub on his already tender skin may not help. I stand corrected! It has helped him stay moisturized a little while longer than he normally does and his skin feels smoother. The Ninja has used this, too (shhhh!) and it is divine on New England winter ravaged skin.

That's what I have for this week! I am working on making this a regular addition to the evolving Asperger Ninja. If you have a product that you would be interested in having us review, please contact me at aspergerninja@gmail.com. Our review policy is going up on the site as we speak. We were not compensated for these reviews. I will always be upfront and honest about products.

Talking about Ornithology & Apiaries

2010-12-27T14:25:00.001-05:00

Nate and I were eating breakfast the other morning, you know, like you do. He was having waffles and I was having my peanut butter and jelly on english. All of sudden, without warning, he asks me this:

"Mom, what does jizz in my pants mean?"

I think my brain exploded at that moment. I mean, talking about sex and sexuality with your child isn't supposed to happen over breakfast! You don't casually talk about Latin terms of the male or female anatomy whilst chewing on Cheerios. And how the HELL does he know about that video?! If you're not savvy, HERE is the link. (it is slightly NSFW for language, but no swears)

He tells me that a friend from school had told him about it, and I clearly wanted to throttle that child. Kids are exposed to those things every day and I should not be surprised that he heard it, but I was surprised that he was willing to even ask me what it meant. I didn't want him to learn about sex, more correctly, sexual dysfunction in that way. I hadn't really thought about it until it landed in my lap, tied with a tidy bow, waiting for me to experience it.

I have always told Nathan that his penis is a penis and that the only people to touch it are him, his parents and his doctor in the doctor's office. He knows that if someone touches him in a way that makes him uncomfortable to tell an adult. That's as far as I've gotten with him and have felt confident in that information. I knew the TALK was coming soon, I just didn't know it was going to be on a school day. I think I handled it well, considering the improvisation of it, but a game plan is better.

When is the right time to talk about sex with your kids, especially your Aspie? Here are some tips which may help you:

1. Repress your FIRST IMMEDIATE reaction.

ALL parents will have an initial reaction to those kinds of statements from the mouths of our babes. My first reaction was overwhelming horror at this boy who had made my child say "jizz in my pants." I knew that him seeing me react with disgust would only matters worse and would squelch any initial conversation he started. I gave myself 10 seconds to collect my thoughts and then began speaking.

2. Have an idea of WHAT you want to talk about

Now, like me, if you get the sneak sex talk, you may have to pull some sex ed out of your back pocket. It's hard to keep that in perspective when trying not to choke on your breakfast, but you may want to have some idea of what kind of moral lessons you want to instill in your children before it comes up. You may be caught off guard at Grandma's house or at the movies. Boy & Girl Scouts motto ring clear here: Be prepared.

3. Use clear, simple terms

I tried to explain to Nathan about sex making it as easy for him to digest as possible. I explained that "when a man and a woman get together and love each other very much and they want to make a baby...." I understand there is infinite subtext that I did not cover, but this was the first time and I wanted to not overwhelm but not to lose him in the innuendo. Aspies appreciate the linear and comforting nature of clean speech.

4. Keep it brief

I'm a talker and would have probably bored Nathan to death, or at least to distraction. His attention span is VERY small, so I spoke clearly but quickly for no more than 10 minutes. I kept him engaged by asking him questions, both open ended and simple response. Your first talk about sex shouldn't be a 3 hour diatribe with charts and video, as you'll talk about it more than once with them. Brief and to the point is key.

5. Tell them they can always come to you

I tell Nate that he can ask me anything, and it's true. I want him to feel comfortable enough to come to me with questions or problems. He doesn't always come to me right away and your children may not either, but if you give them enough room to ask, they will. Their natural curiosity about life and how thing work may have them engaging you sooner than you think.

All in all, I think I handled it well, even in my pajamas. I feel that he understood what we talked about and maybe even absorbed a bit of it. He did ask if there was a technical term for "jizz" and I said, "Well, you can say 'ejaculate' or 'sperm'." He responded, "EWWWWW!"

That's my boy.

2010-12-20T00:04:00.000-05:00

We speak social anxiety here, the both of us. Yes, Nathan has difficulty with social situations, it comes with the territory. You may not know that I struggle with it, too. People are surprised when I tell them that I am socially anxious. They'll say, "But you're so friendly, you're so animated." That is true, but it's taken me many years of practice to get to that point. I still go to a party and my stomach is brimming with battery acid. I've been going to therapy, where this is being discussed and dissected. It's very hard work. I cry. A LOT. Staying objective about feelings, keeping to the truth instead of hiding in the "safety" of denial makes me exhausted and drained.

This has given me a better and clearer perspective when Nathan goes to therapy. Nathan doesn't like talking about himself, what happens during his day. I've always felt that it's just because he feels he'll get in trouble if he tells the truth. Now I think that it's painful to talk about being him. I think he looks at himself as a burden, that he frustrates me. And honestly, there are times that he does frustrate me, as all children are genetically engineered to do. He is never a burden to me. He never has been. Our work in therapy is to have him become more social and focus on making connections with others.

Nate was invited to a birthday party on Saturday. His first one. He had never been to a friend birthday party. I was overwhelmed with excitement, as this was a great opportunity for him. I didn't want to bombard him with my projected anxiety, as I wanted him to go and to succeed. Mostly I wanted him to have fun. It was a karate birthday, which was a double bonus. He likes karate and the party was at a studio where he used to take lessons.

Part of my work in therapy is that I need to teach by example. In regards to social situations, Nathan doesn't see me being social often enough. He has no point of reference, so for him, being social and making friends isn't something that you do. So, why should I be surprised that Nathan is happy to stay at home and not engage others? I was, and now I'm not. I do have a tendency to keep close to home. I know I am weird and I don't talk to people as much live and in person. Social media makes it easy to stay in "touch" but not in the sense where it's good for you and your soul. It's something I'm working on.

So, I found it a little strange when the party was a "drop off". I was put off guard when I heard that. I was expecting and was very happy to stay. I wanted to meet parents and talk with them. I desired to make connections with folks so that I could be more friendly and that Nathan would have that many more kids to play with. Seems I was the only one, as most parents who dropped their kids off were MORE than happy to leave their offspring for a few hours. I was a little sad. This perfect opportunity to show Nathan more skills and mostly, yes, to see Mom using her friend fu was now dashed.

I was concerned, too, that Nathan may have a meltdown. I am usually there to keep an eye, to give our special handsignals to guide him through sticky social terrain. What if kids made fun of him? What if I wasn't there to comfort him? I stopped my internal typhoon for a moment and saw him playing with his friends. He was having fun. And he was FINE. I was STILL so nervous, but I knew I had to have faith and trust in Nathan's abilities. I made a compromise with my paranoid self. I left my phone number, just in case, and I went home. I made a turkey sandwich with extra spicy mustard and enjoyed it while watching the Cooking Channel. Once I was done, I went to check on Nathan. He was sitting quietly with a group of girls. There were three boys, who were like hyenas on crack: hitting each other, laughing loudly, not listening to directions. The father of the birthday girl let me know that Nathan "was the quiet one", and didn't give an ounce of trouble or worry. He had played dodge ball, had a mini karate lesson, had pizza and cake and then got loot from a pinata. He was very happy. And I was happy.

In the last few weeks, I have been going out a little more. I have been connecting with folks I haven't seen in a while and seeing people in places I never thought I would. I am out of the loop, but am working to get back in. I see how difficult it is to bridge the gap of not seeing and interacting with friends. It's hard. It's confusing. You don't remember things about them. You feel embarrassed, like you SHOULD know and you don't. I am slowly navigating these once familiar waters, trying to remember landmarks.

Nathan and I went out into town the other day. We had a walk where we stopped at the toystore to buy a present for the birthday girl, went to the bank, stopped at a gourmet food store to say hello and then to our local coffee shop for a root beer float and a mean game of checkers. This is a HUGE step for the both of us. I was proud of him for doing each and every transition and a little proud of myself, for reaching out of my comfort zone.

Nathan will learn by watching me and as I hone my skills over again, I will have the ability to help him through his pain and awkwardness. We both have hard shells around us. His is new, mine is rebuilt. I am breaking through and helping him breech his own shell.

There are tears, and frustration, and exhaustion. There is confusion and linear thinking. But there is always love and understanding, even if I don't understand at that moment. One day during therapy, Nathan had his first meltdown there. We were there, playing a game where Nathan had to skip. He had attempted to do it once and he fell down and sobbed for 30 minutes about how horrible he was that his "brain couldn't skip". I held him, talked to him, rocked him, tried to get him to focus. His therapist said, "You're so good with him, so patient." I just am. It's not something I long for acknowledgement for. He needs me to know him, inside and out, even when I don't know MYSELF.

It reminds me of I Corinthians 13 where it says about love: "It always protects, always trusts, always hopes, always perseveres." The passage itself never made complete sense to me, but over the past few months, it has come to mean so very much. I'm not particularly of any religion, but this resonates strongly with me. I love and I need to be strong and I must have faith. I do, and I shall and I will.

First Things First by Gina St. Aubin

2010-12-05T21:02:00.000-05:00

Friendships Lost Leave Openings for Others

by Gina St. Aubin

Who hasn’t looked around and taken an unwitting inventory of their lives; which parent of a special needs child doesn’t do this on a regular basis? In the back of our minds, on days when all seems in order, along with days of disarray, do we not consider which direction we’re going, how many dreams have been reached, mended, rearranged or forgotten? What will our next steps be? Who is in our ventilation system? What supports do we have?

And there we have it. Our supports. Family? Other parents? Other parents of special needs children, neighbors, friends?

Our friendships are probably the hardest to count. The hardest to consider. All around us, in a constant state of flux, it seems our friends and our friendships have changed dramatically. Many who surrounded and supported us through our ‘previous’ or ‘normal’ life may have all but disappeared.

As best I can recall, we thought it was a slow death of friendships, but in reality it was within a head spin. After J’s initial diagnosis, eyes still in a stare of disbelief, we found ourselves robotically picking up, dusting off and beginning the navigation of what was to be our life. Looking up and finding that not many people were standing with us left us feeling beaten. Some wanted to understand, to be involved, then shrugged with the lax of non-investment. Some family spoke in concern, yet displayed ambivalence and disinterest, finally making their distance. We were left with very few supports, very little understanding and an invisible roadmap to a place that shared no resemblance of our initial dreams.

Familiar? Most of us share a similar story of the blossom of our travels. As the road crumbled, forked or waved (depending on your perspective), silhouettes of friendships we held softly, sometimes abruptly, disappeared. We thought they were there, their presence of security and camaraderie beside us until we took a focused look in their direction and there was an open space...a void.

Fast forward. Now working at friendships becomes actual work. The difficulties of letting anyone in, not from embarrassment, rather the exhaustion of starting a new relationship with someone who may be unable to fully understand what it takes to be involved with your family, who may turn out to be judgmental, or who may very well just find it easier to let you go...or in all honesty, you find it easier to let them go.

Finding a friend (or potential venting source) also means attending gatherings, educating on what that looks like for your family and how it could integrate (nor not) with theirs. Quite frankly, there are sometimes you don’t even know that you can muster the courage strength to do a get together until the day it happens. It appears flaky, indecisive, uninvested.

Other times, you know there’s been too many “we can’t(s)” and “maybe another day’s” leaving you to grit your teeth and attempt transitions and integrations in the best way possible. Enough replays of watching friend’s faces, stunned and awkward silences, and less contact until the friendship dissipates, and you begin to close off to the possibility of friendships. It’s disheartening to put all the time and effort into a relationship when experience tells you it will falter in the end.

But.

These relationships are vital. They’re testing grounds for life’s outlook. They’re bond-building on the commonalities of being a parent, being a wife or husband, in being a woman (or man). You may find someone who enjoys finding just the right spice for a favored dish, or finding that perfect bottle of Merlot. Someone who enjoys writing, reading, skiing or walking to get some fresh air. It may be someone who gives you insight, a different perspective, or you may be the guide they need as they begin their ‘normal’ or ‘special’ journey…the commonality? All life’s journey’s are special.

As time goes, as you become more accepting, comfortable and knowledgable with the way your family will interact with the world, in how to help your children navigate the waters before them, you will become more comfortable and confident in yourself and the friendships you will allow and open up to in your lives. People you come to know will, in a short time, ascertain that to be with your family, with our families, is to accept all that we have to offer. To allow themselves the opportunity to enrich their lives and share in our special journey.

There are people who are interested, heartfelt in their desire to befriend and understand us as individuals as well as a special needs family. Whether sensory processing disorder, cerebral palsy, fragile-x, autism, down syndrome...a combination of or another disorder is what our lives hold, there has become more understanding, awareness and acceptance of our families in the world. Not everyone is an adversary; not everyone a saint, but someone will understand.

Online friendships are nothing to scoff at. There has been more than one time the support I receive in blogs, comments, email or twitter has kept me afloat. A similar bond, a similar circumstance. Other parents whose children are in a special education programs with yours, neighbors, old friendships rekindled…

If there is one thing I can leave you with as we begin to look towards the New Year, it’s this:

The friendships we need will come when it’s right. Forging the lifelong bonds with other parents that will follow through the school years, those which help foster our children’s friendships giving them support they can rely on when it gets tough to be a kid with differences...will come. Possibly not an overabundance, but in just the right amounts. We will meet other parents with children that closely resemble ours, whose struggles seemingly overshadow ours or match in eerie detail...we may bond with them, we may move on, or we may be unable to reach out or accept friendships as the duties we are charged with have become heightened in priority.

The times of our isolation are necessary, clear in hindsight, and will pass as “that time”. Know that when we’re lonely, feeling isolated, misunderstood, the support we should thrive upon can be in that single passerby and their nod of acknowledgement. That dad you find yourself sitting across from while waiting for therapy’s end...their ‘knowing’ expression. The compassion that passes between you. The support that can come from that one person before you in the grocery line who feels the difficulties consuming your child and steps aside, allowing you to go first.

Conversely, there will be times when your social plate is full of those who want to understand, help, or find no difference between your family and theirs, gladly accepting all you bring and all that your family offers.

Every thing has it’s place. Every being has their purpose. Every person who is in our lives, has left our presence or is making their way to our future unseen leaves their fingerprint upon us, and we upon them. The relationships we will thrive upon, learn from, will come to us when we need them most. Being open to them is the first step.

As New Year’s Eve is my favored holiday, my favorite time of hope, perspective, of priorities renewed, I believe that if we all are able to open a little, allow a little room for possibility, for a true, caring, safe and righteous friendship to be formed, we may all fill a void...the void of the space left open for another to fill.

I am honored to be closing the first, “First Things First” Series. As your New Year moves along, and your life shifts in the flux only a special needs family can, I would encourage you to revisit each post. You may find a different meaning in your favorite writing or one you quickly skimmed. What seemed insignificant before may become too familiar; what was your focus may be passing snowflake in the winds that have changed.

Life has a way of changing your perspective and it is the hope of each of the contributors that we could shed some insight, pass along resources and leave you with a sense that we are all sharing in the journey. Most importantly, to do what we must, we must take care of ourselves...First.

Wishing you a Hopeful and Happy New Year.

(Blind) Side Effects

2010-12-03T10:02:00.000-05:00

One of the things that Nathan suffers from (besides me, ahaaaa! Oh...I slay me) is seasonal eczema. His skin gets very dry and scaly. Now, common wisdom would have me put on some sort of skin cream to keep his skin moisturized. But....Nathan hates any type of anything on his skin. Bath time, sun screen, moisturizer, lip balm...sets his sensory issues to Light Speed.

At this time of year, Nathan's pediatrician recommends putting him on Atarax , which is similar to Benedryl. I checked with his doctor to see if there would be any interactions with his current medications and what kind of side effects would I see. He said we may seem him become more drowsy, but he may also become more hyper. Nathan has been on it before, so I was pretty confident what to expect. It would to be a 1-2 punch. Nate would have the hydrocortisone cream and the Atarax.

I didn't see the hyper, but his step mother did. Her name is Emily (aka My Emily as Nathan calls her) and she emailed me and told me that Nathan was more hyper and active than usual when he was with her and his Dad. I chalked it up to him being off his regular schedule, as this was during Thanksgiving break. But then, I thought back to his behaviors here at home. He was having headaches, which he normally does not get. He was very grouchy in the morning. He was super sensitive to requests, even small ones like, "Would you please shut the door?", which was met with the dulcet tones of him screeching like a howler monkey.

I know it seems elementary, but I didn't see the pattern until I got the whole story from Emily. It probably would have taken me a bit longer to notice the change on my own. Thankfully, I have a great relationship with her and that helps make co-parenting a little bit easier. I decided that the Hydroxyzine was doing more harm than good and I haven't given him any since. He has regulated his mood and behaviors and though he is itching a tiny bit more than he was before he was on it, we are counter acting that with moisturizing products that don't drive his skin sensory issues through the roof.

So, drugs on the whole if they are beneficial and do more good than harm are great. Drugs that have more harmful effects that counteract what they are supposed to help are not so good. We have been lucky that the current meds are working and we have few side effects. This new one has not been so kind to Nathan. They are supposed to help, not make him feel like his brain will explode or have him cycle longer in hyperactivity. I think that the folks over at Thinking Person's Guide to Autism have a daily checklist to monitor behaviors and see patterns which may not jibe with what your child normally does. I am going to be more diligent in that. I want Nate to thrive in his skin, not tear it off with his teeth.

Strangely Amazing

2010-11-26T14:04:00.000-05:00

Strange: unusual, extraordinary, or curious; odd;

Amazing: to overwhelm with surprise or sudden wonder; astonish greatly

The other day, Nate and I were driving home in the car. I had picked him up from the Y afterschool program and I was asking him about his day. This can be tricky. Most days I don't get anything from him. If I do get a morsel of intel, it's quickly followed by, "Maaawwwmmmmm, can we stop all of this TALKING?"

Not this day.

Nate told me, "Mom, I had some crying", which I told him that it was okay to cry. He paused...and then he said, "Mom, I'm...different. People tell me I'm strange. Am I strange, Mom?"

The tidal wave of emotions that fell over me was palpable. My eyes swelled with all too familiar feelings and incredible empathy. I had similar conversations with my mother, and she just said I was "hyper". Hyper meant I didn't participate in extra curricular activities or went out to stores. I was verbally put down for being ME, which I certainly couldn't control and had no instruction manual to trouble shoot with. I was taught that it was BAD to be ME.

Ahh...the old negative psychology pep talk. It NEVER works.

I looked at Nathan in the eyes and told him, "Nate, I would rather you be strange and amazing than be like everyone else. I am proud of who you are and who you are working to be. Strange isn't bad. Strange is unique and special. And you, Nate, are strange and creative and wonderful and I would have you no other way."

He snuggled next to me and said, "Mom, were you strange?"

I laughed, "OH YES, I was very strange and I still am. And I'm very happy and proud to be so."

We both had tears in our eyes. He said, "Mom, I love you more than Pop Tarts."

I giggled, "Even S'mores Pop Tarts?"
"Don't get me wrong, Mom, I love Pop Tarts, but I do love you more."

There are days when I wish that he never had to suffer the daily struggles of the social jungle. But all children do, even my child. I want to let him know that it's okay to be who he is and to never be ashamed of that. I still wrestle with it, I admit, but I won't let him. Encouraging his uniqueness, his true self is part of my job as a parent.

I love my job.

Taking Stock

2010-11-17T22:24:00.001-05:00

I've been absent the past few weeks, but I am back on the road I was travelling on.

Seems I got lost somewhere, forgot what was important and was hyper focused on things I didn't need to be laser precise with. I'm in a production of "Our Town" and it's really hit me to the core. When Emily says, "Oh, earth,you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it--every,every minute? "

I wasn't. I was sleepwalking. And it scared me.

This picture is of the back window of my car. I almost didn't see it because I am usually so self absorbed in the morning, I don't take the time to notice these little slices of pure unadulterated awesome.

I haven't been the best friend, partner, mom or human being. I am refocused and rededicated to working on being that person again. And, you're thinking....Asperger Ninja will be no more?

No, not at all. But I won't be as obsessed as I have been. I want to focus on the writing, not on the wanting to be known for my writing. I want to snuggle on the couch more, play more games, be there for those people in my life who matter the most, and live this delicious life.

There will be more awesome Nathan stories, more adventures for us. There will be those goofy anecdotes from my brilliant boy. I guarantee it.

As the Golden Girls say, "Thank you for being a friend." Thanks for staying with us and being part of this journey. There is and will be more to come.

Nate at 14 months

Nate - November 2010

First Things First: Leslie O'Donnell

2010-11-08T10:33:00.000-05:00

Two weeks ago, I woke up at 5:30am in excruciating and unfamiliar pain. The doctor on-call that night listened to my symptoms and thought it sounded like kidney stones. What I heard was, “You will have to pull a still-exhausted Jamie out of bed, and torture him and everyone else by dragging him through a long visit to just the sort of medical facility that he has really bad memories of and phobias about. This will potentially lead into him getting to leave only by being torn away from you, who will have to stay there getting treated, therefore NOT BE THERE TO BE HIS MOMMY.” Suddenly, my pain levels and diagnostic prospects mattered a whole lot less. Well, they did to me, anyway. My husband, devoted daddy and husband that he is, was having none of it. “Just how expendable do you think you are?!?!” he not-quite-asked me.

It’s funny. You never expect it to be flattering if your husband looks at you as if you were the most infuriating idiot in the world. As it turns out, it can be.

Testing showed that my kidneys were fine, but my gallbladder had had just about enough of me. I had to resign myself to all the infinite lamentable ramifications of NOT BEING THERE for my child, that a special needs mommy is a little too good at thinking of. Furthermore, while they just barely managed to remove the organ laproscopically, I had to resign myself to a one day emergency surgery that still managed to turn into three days and two nights in the hospital. Still, now that I’ve been home for a week, Jamie has mostly recovered, and I can again hug him silly without immediately screaming in pain or throwing up, it is somewhat easier to remind myself that by putting him through those three days without me, I was able to avoid a more intensive version of the surgery which would have kept us apart for far longer. More importantly, I was able to make sure, at least on this account, that Mommy would remain with him, in a more general sense, to get him through all the other traumatic surprises life can hold in store.

There is a lesson in that, which, through my haze of pain killers, I grudgingly apply to everything else I intended to write this article about. See, my son has special needs. Born two months premature and with a blood disorder further complicating his development, he was left neurologically disabled. My poor screaming baby who was not supposed to survive is now happy and healthy, but he also has Autism Spectrum Disorder, Sensory Processing Disorder, Seasonal Affective Disorder, and an as-yet-unidentified neuromuscular disorder. Every step of the way between the two – every day, and every night, until this hospital stay – I have been there with him and for him, doing everything I can in my power to help him thrive because of and in spite of himself. The qualifier there, however, is “everything I can.” The thing is, recent organ failure quite aside, I have special needs too. I am not neurologically disabled, but I am physically disabled.

It’s very well and good to talk about how to triumph, in whatever large or small ways you can, over the challenges of meeting the needs of a special needs child, while still taking care of yourself so that you CAN have the best chance of meeting those needs. Oh yes, very well and good, as well as easier said than done, and a variety of other clichés. But what do you do when both you and your child are disabled, especially if those special needs – which neither can afford to have neglected – sometimes conflict? I live with chronic pain, fatigue and mobility-impairment, and yet caring for my child demands always being “on”, always being able to move and think enough, and fast enough, and being able to take everything he dishes out with a deflection towards improvement, not a grunt from the impact. This post-surgical recovery period isn’t the first time that being too careless about how I take care of him could incapacitate me before it incapacitates him; it’s just the first time those considerations come with carbon-copied forms. So what do you do??

To avoid unconventional flattery from my husband as often as possible, I keep two running lists in my head, against which I habitually check – preemptively, when possible – everything I am thinking of doing for my child. On one list, I keep in mind his needs on one side and I keep his limitations on the other side, both in general and as they stand more specifically at any given time. On the other list, I keep my own. Brainstorming is not so much about whether or not either of our needs will be met, but about how they can be met in such a way that they do not conflict with the other person’s limitations. The rule of thumb….and of recent experience….here, is that if anyone’s limitations are exceeded while forgoing their own needs for those of the other, the needs of the other are going to end up worse off, anyway. Often enough, this strips down from needs all the habits, rituals, traditions and aspirations that we attach to them. Bitter pills to swallow can be the ones that keep you alive, though.

So maybe when I’m choosing my battles with the war in mind, I have to do Jamie a favor that’s really a favor to myself, like letting him watch a video before doing his homework, so that I don’t have to go for a lot more hours than I aught to without my Percoset, just to avoid an hour’s overlap with him being home from school. Or, maybe sometimes I have to do myself a favor that’s really a favor to him, like begging off taking him to the playground so I have the spoons to get him through any bedtime drama without losing my cool and not being the super-mommy that he needs more, in that way. Sometimes, we just have to both feel compromised, so that we can both get what we need – like during those aforementioned bedtimes, when I am not currently allowed to end the ritual our traditional way, by snuggle-carrying Jamie directly from my lap on the rocker and into his bed, and so instead must allow him to prolong bedtime with lots of extra “Mommy’s turn.” I’m not happy about the delaying of bedtime and the lessening of sleep, he’s not happy about having to break free of my embrace to put himself to bed, but on the other hand, he still gets the extra reassurance and comfort he needs at the end of what’s always a hard day, and I get to not herniate something that’s still healing. Before all this, the balancing act might have involved asking that my birthday present be a new walled, inflatable trampoline for him, so that he can get his motion and impact even on the worst-weather days, without needing mommy’s body to be able to provide them (or safely redirect them from something else not built to safely handle it).

However keeping our needs in balance are done, the important part is keeping in mind that it HAS to be done. There never seem to be enough things I can do for my child, so when I think of something I could do, but I can’t…oh man, that kills me. But what he needs more than to have me be the one to meet all his needs in the way I would like to, is for me to be there, the one who understands him best, the one he is most connected with no matter what he is doing with who, and the one who has the most luck figuring out what anyone can do to meet his needs. What he needs is for the “killing me” to remain metaphorical.

Speaking of which, I’d really love to keep editing this until it meets the standards I have when I’m in better shape, but Jamie is going to be home from school soon, and Mommy needs to get off this chair and work the kinks out so she can make it down the driveway to get him from the bus.

Happy Halloween!

2010-10-31T20:12:00.001-04:00

Here we are, in front of our house, with Nathan being an unsparkly yet amazingly handsome vampire and me being...well...a ham.

Halloween is a time where I would obsess about costumes, about the little details and I would forget what's important. Having fun.

Nathan's comfort and fun level are more important than making sure I have lights and decorations up, or my costume is not to some personally insane and unrealistic standard (I'm a historical re-enactor, too) or has he been out long enough. I'm lucky that he can go out at all. I know some Asperger's kids can't go out due to sensory issue or the like.

He was out for 45 minutes. He was very happy with the amount of "treasure" he got. He smiled the whole time. He knew when he was done.

He's happily eating cheese balls and watching cartoons. I am content. He is content. All is right with the world. :)

It Gets Better, Ninja Style

2010-10-20T07:25:00.002-04:00

We're purple today for a very good and very important reason. There have been a rash of suicides in the LGBT community due to persistent and pervasive bullying and harassment. These poor children, and they are children, have to go through the gamut that is puberty and attempting to find their place in this world. They have to endure what all of us have gone through before them. Growing up.

Growing up is one of the most powerful, one of the most painful periods of time that we all must face. We cannot avoid it, no matter how hard we wish it, no matter how many times we scribble into our journals late at night how much we loathe it, no matter how high we crank the volume in our iPods to drown out the sound of the voices in our heads. It is there. It is the proverbial right of passage.

The current right of passage is mean.

When I was growing up, I was bullied, picked on and made fun of practically on a daily basis.I dressed weird. It was the 80's. I loved Duran Duran, neon clothing and lots of jewelry that was big and loud and didn't match. I literally stuck out. I didn't have the strength in me to stop it until my mother (God bless her) told me to swear at the kids who were doing it.

I remember to this day, being in Mr. Erhardt's 9th grade math class. I heard them all snickering in the background of my latest ensemble. I had HAD it. I was done. I let out a powerful booming, "FUCK YOU!" to the entire class. I didn't care who was blanketed with that phrase. The whole class GASPED. I was immediately sent to the principal's office where I was served two days in school suspension for swearing. (This was 1986, and who knew swearing would get you that?)

But you know what? NOBODY and I mean NOBODY ever never tried to mess with me again.

I was very lucky. I know my mother was probably tired of me coming home every day, weeping into my pillows about how miserable I was and my inability to stop it. She gave me the tools, and the support (i.e. I didn't get grounded at home for swearing at school) to help me through a very difficult time in my life.

There are alot of kids who do not get that in the LGBT community. There are alot of kids in this community, in the SPED world, who do not get it from their parents or their peers. They are wading through already unchartered waters, the growing up part, and then on top of that, they haven't yet mastered the difficult rocks and crags of social pragmatics and facial expression. They are teased, picked on, beaten up, hazed at the back of school buses (this happened to Nathan, by the way), cyber bullied, tormented on FaceBook and sent harassing text messages. The list is endless and its GOT TO STOP.

Awareness is just the start. We're getting there with awareness. The Tolerance must begin. We must preach and teach tolerance. Did we not come to America for religious freedom, for the right to practice our different religions as we chose? Did we not fight for our independence in the Revolutionary War? We are a country of believers of individual freedoms and the right to life, liberty and the pursuit of happiness.

Somehow, in this technoheavy world, where we live in that protective and Big Brother 1984 esque bubble, some people are able to dictate what is normal and what isn't. We have thrown what our Founding Fathers worked and died for, away. We need to get back to the idea of Tolerance, of Acceptance and of loving our fellow man, no matter what they look like, what religion, sexual orientation, physical or mental disability they may have or if we don't agree with their lifestyle. As long as people are doing no harm to themselves or to others and are essentially good people, who are we to say that they are wrong?

I see this every day with the kids that I work with and with the way that children will interact with Nathan. I teach them to see from another person's perspective, to start revving up that theory of mind engine to make them think about the words they use before they use them. To make them see that their thinking, and consequentially their words, can potentially hurt someone. I understand that kids will pick on kids, that's part of life. But bullying, harassment and hazing is not. Depression and suicidal thoughts for children is not. Mothers and fathers having to bury children that took their own lives after being tormented and bullied every day is not.

And it DOES get better. You may be afraid to reach out, to tell someone that you're being bullied or teased incessantly. That is NOT okay. And you are NOT at fault. Find a friend, an adult, a teacher that you trust and TELL them. Bring them into the fold. Let them know you are suffering and that you need help. You deserve to be happy and to live your life the way that you want to and to BE who you ARE. There is nothing wrong with being YOU. YOU are fantastic and unique. If we were all the same, it wouldn't be interesting. I'd much rather have interesting, and I know that the world does, too. I want you to be a part of it for a very long time and for you to contribute to the tapestry of life. Your threads, your words, your experiences and your voice add to the texture and depth of that. We couldn't have that brilliant and gorgeous diversity without YOU.

Awareness and tolerance is key. Knowledge is power, it truly is. The more we know about something or someone, the less we fear it. The adage is true, "There is nothing to fear, but fear itself."

I am fond of what this PSA has to say:

Please, let us all work together to bring Tolerance and Awareness to the forefront of this epidemic. We have the power to make change. Let's start now.

Welcome To Fail!

2010-10-19T22:24:00.000-04:00

I am the mayor of Fail today.

I left a note with Nathan's school that he is to be picked up by me on Tuesdays and Thursdays. Now, this morning, I told him that he was going on the bus to his afterschool program. My after school program had an early release, so I figured, no problem. Right?

What's the one thing that's missing from that equation?

A new note telling the teacher that he was to go on the bus.

Yep. I failed. Big. HUGE.

I got the call around 3:30 from the school wondering where I was. My stomach immediately drops to my toes and I start sweating like I was just informed I was about to be waterboarded. I can imagine my poor Nate's brain thinking I have abandoned him like a travelling hobo. I trip over myself, apologizing profusely. I get Nate on the phone. He's very upset and disappointed. He feels dejected, confused and sad. I tell him that Mom made a mistake and that I love him and that everything will be okay.

He said he wanted to go home, I told him if he did I can come and get him but he decided he wanted to go to his program. The school managed to get him there (EEESH!), but I was thankful that they did. I called him at 5:30 and told him I was on my way.

I get to his program and I start conversing with both the Site and the Program director. The Site Director means well, she's a LSW and she likes to speak in calm tones and does a lot of (what I feel is) unnecessary over explaining, which I understand why she does it but I feel like saying, "Hey, girlfriend, we speak the same language. I don't need the Cliff Notes." I just wanted to pick up Nathan.

He was a little miffed I was late, but he was happy non the less. We came home and I was feeling blue, more blue than I usually am, almost emo in an uncool I'm not 20 years old anymore way. It's that particular time of the month, it's almost a full moon, I think I have ghosts in my basement. No that's not a typo. And things are very much up in the air in regards to my recent interview and potential promotion. I get that quiver in my voice when I'm about to cry. I explained to Nathan why I was sad, how I felt that I had let him down and that I didn't mean to forget and I'm not a bad mother and I am nervous about what the future is.

You know what that little punim said? That amazing empath?
That ubersmart kid?

"Mom, don't fall down on yourself."

That coupled with, "Let go, do your job and let the best things come to you." (from my best friend, J.T.) was the most wonderful things I heard today.

What I learned today was that I can visit Fail. But I don't live there. I live another day having gleaned more self awareness and knowledge. And I didn't eat my atomic weight in Trader Joe's Spicy Black Bean Dip.

The Art of Waffling

2010-10-17T22:45:00.000-04:00

I've been gone for a few days, had some computer trouble (first with Blogger, and now with my laptop taking a dip in some Diet Coke) and am finally back with a post about me.

Nate's doing great, by the way. Communication with school has been tremendous. He is making huge improvements. We are working together to communicate better and we are seeing progress.

Stuff in my corner, however, I am still working on. I seem to have a problem, and perhaps you have it, too, where I "waffle" or go back and forth on something. This post was originally supposed to be how I have been an impediment to my own progress and how I can't get out of my own way. That I am my own bump in the road. I had this strange and surreal epiphany last Saturday.

I was driving to the ARC. It's 8:45 in the morning. I'm a little grumpy that I have to get up early on a non school day but not grumpy enough to make me not work. I was talking aloud, to myself, which I sometimes do when I'm frustrated. I was lamenting that I don't make a lot of money, and that even though Nathan and I have every thing we need, we do live on a shoe string.

I have not completed my schooling that I set out to do 2 years ago because I felt that if I chose one path, I would some how pigeon hole myself and limit my choices for a future profession. I got mad at myself for not having a full time job and that exacerbated my frustration at not finishing my schooling because I was unable to commit to a choice. I continued to beat myself up for not being more financially secure in an already insecure financial setting due to the fact that if I had all of my proverbial shit together almost 20 years ago I wouldn't be having this out loud potentially psychotic conversation with myself. I put myself in near anxiety attack mode when it dawned on me that Nathan would graduate in 10 years and college, though not looming, is on the horizon. Kind of like the Four Horsemen of the Apocalypse.

And I started crying in the car.

Having enough forethought to pull over, I stopped crying and started figuring out what was wrong. I knew that I was responsible for my own actions and choices. I knew that I had the power to make those choices. I wasn't making those choices and I let them become anthropomorphic and literally get in my way. I was in my own way.

I thought about how these single mothers are able to overcome seemingly insurmountable odds to achieve greatness. What made them different? They didn't waffle. They didn't let this gigantic carbohydrate hydra take over their lives like I allowed mine to do. I wanted that. I wanted to taste that achievement. I knew that:

I was preventing myself from achieving things that I wanted.

I had the power to make things happen.

All I had to do was to apply myself and make it happen.

My life is still complicated, but it doesn't mean I have to put everything I want to do on hold. I did press the pause button on some things (education, acting, other pursuits) when Nathan was smaller. He's a bit older and more flexible which leads to more options. He is still my first priority, but I can now focus more time on the Mama to ensure that our future will truly be as bright as I dream it always is.

The road there is long and it definitely won't be easy by any stretch. I have a wonderful network of friends and family who are here to help me make those goals come alive. I know I am making this sound like it's elementary, so basic, but it is.

When Noah's son says, " Aww! That's HARD!" Noah says, "No, it's very simple."

I know that I will still be working on this for the near future. It is something that I have been wrestling with for a long time. I do not believe it will be solved overnight, but I feel, deep in my heart that now that I have acknowledged the problem I am responsible for keeping up with the solution.

I have decided to pursue my degree in Psychology. I have transferred my 20 yr old credits from my alma mater and am waiting to hear the results. I have a call into the school to do a portfolio of my life experience and turn that into credit as well. I am planning on taking classes in Winter 2011, whatever they may be. I will keep you informed of my progress.

It's Magic, You Know.

2010-10-06T09:56:00.000-04:00

Yes, it's a double rainbow. Yes, it's Fenway Park. And yes, I can tie this all together to my IEP experience.

Back in 2002 after years of disappointment and heartbreak, the New England Patriots won the Super Bowl. I was pregnant with Nathan at the time. I recall , jumping up and down at the thought of us finally winning a Super Bowl. It had to have been magic, right?

Fast forward 2 years. The Boston Red Sox, the baseball team "cursed" to never win a World Series, made history as they won in 2004, coming back from a 3 game loss. Was it possible without faith? Without a little elfin magic?

Jump forward a little more. Nathan's IEP update was last Wednesday. I was a little nervous, and honestly, I think we all get nervous despite how many times we do this intricate dance. I was surrounded by a group of women who were just as passionate as I was about getting Nathan the proper services he needed. And the amazing part? He got ALL the things I requested. More movement breaks, increased OT, homework alteration to work within his current parameters, new and improved sensory diet. The best part? Getting a SCRIBE for the MCAS. A SCRIBE. I thought I was going to have a stroke when they agreed with me. I was prepared for a gigantic Mortal Kombat fight sequence. I was a little relieved when I didn't have to pull out the big guns. How did that happen? How did I get so lucky?

I don't know for sure. All I know is that he is much happier, there is significantly much less stress in our home. Homework is not the bane of our existence now, as we addressed it with his teacher who allowed us to modify the way does it. He likes doing it.

Is it Magic? Divine intervention? The Universe moving in mysterious ways?

There are days when it's difficult to see beyond that belief, when I'm down on myself and I'm exhausted. I have times when I don't know if Nathan will get it, if he is imprinting in his brain all the things that I am trying to teach him. I worry that he'll not be self sufficient and that I will have failed him. The world is so difficult to navigate, even for me. I stress and I fret and I worry. I don't think I'm good enough sometimes for even breathing, never mind being an advocate or a parent. Yet, I'm able to pull it together, gather myself and go forth into the unknown and untested.

I do it. I do it every day and I never give up. I love what I do and I love who I am and I love what is in my life. It's not the easiest path, but it's my path. I see the magic that surrounds it and I am blessed by it.

Belief in magic gives us hope, causal explanations, and the illusion of control – all of which we tend to crave – at times when any of those things might be hard to come by. Fears can be assuaged, threats can be tamed, stress can be eased, physical constraints can be transcended, and smoldering embers of hope can be rekindled when magic is possible.

Halloween. Yes, have some!

2010-10-01T23:01:00.000-04:00

I love Halloween with an unholy passion. It's ridiculous how much one holiday puts me into a perpetual state of glee. I don't think I can narrow down exactly why I love it. The smell in the air, pumpkins, apples, falling leaves, bonfires, costumes, candy, decorations, bats, witches...they're all part of this delightful make believe world.

It was the one time of year I got to be someone I wasn't. It was a relief to me when I was younger, as I had horrible self esteem and self image problems. I have moved beyond that, and now, I concentrate on the positive aspects of it.

Nathan is totally into Halloween now, which is fantastic. I would like to share my love of Halloween (for kids and adults) with all of you with a little thing I call:

Halloween Goodness!

Now, I know this is primarily a blog about Asperger's and ADHD. I don't want you, dear Ninjas, that I'm changing the programming. I'm just adding this fun and jaunty segment into the regular content. So, sit back & enjoy!

You've never seen pumpkins like this! Delightful recycled non toxic Crayola crayons become reborn as art supplies du jour! Great for holding (with added sensory bonuses for raised pattern & color scheme) and would be wonderful as a gift bag addition.

Pick them HERE

ADULTS

During Halloween, we constantly search for white face makeup. You see it at CVS and say, "Oh, I'll get it later..." and then you're desperate for the pale gauntiness of death and lo and behold! It's gone forever. The white stuff always goes first, by the way. However, cherubs, all is not lost! Pick up this charming Geisha White Mineral Makeup, which is good for your real skin and will give you that delightful pallor of recent decay, which is what all the ghouls and boys are looking for.

A whiter shade of pale is HERE.

First Things First: New Article by Diane M. Renna!

2010-10-01T21:45:00.000-04:00

Finding My Inner-Self

By Diane M. Renna

I can vaguely remember my Dad telling me to, “just go take a warm bath and relax and read a book.” It was about eight years ago. I could barely sit still myself and I thought, “There is NO WAY I would be able to relax in the tub; let alone read a book in it.” I tried…I think I lasted five minutes tops. I am sure the book was also related to how I could help my children to boot. I would often hide-away in the bathroom with my hands held over my head…praying for patience and help…”that this was not my daughter… please help us find help and get through this…I would help others in return.” I was overwhelmed and wanted to help my daughter. My husband, Lorenzo, and his partner, Diego, had a pizzeria 45 minutes away and they worked all day and night. He would help when he could, but mostly everything fell on my shoulders. I was lucky enough to be a stay-at-home mom. However, there was not as much information about Sensory Processing Disorder (SPD) then as there is now. I often had to drive long distances to get help. I was blessed to find therapists that worked with me and taught me what to do.

At this time in my life, my daughter was diagnosed with severe Sensory Integration Dysfunction (SPD) and she was attending an integrated preschool. We were starting our family journey to wellness. Meghan’s younger brother, Michael, also was diagnosed with a milder SPD and it did not affect his everyday life as dramatically as it had affected Meghan’s. Let’s face it…I was hyper and always on the go myself. I realized I most likely had SPD myself.

I devoted all my time and energy into helping Meghan and Michael. I read, learned, played, and grew as a person along the way. I applied the same traditional and alternative therapies/techniques for myself as well. Soon, we all started getting better. Believe it or not, I was even taking long Epson Salt baths and sleeping well. It took a long time, but it was worth it. If it wasn’t for other parents and therapists dedicated to helping children with SPD and Autism Spectrum Disorders (ASD) kids/families, I don’t know where we would be. I never dwelled upon labels…in fact…most of what helped Meghan and Michael…were therapies/diets/techniques designed for children diagnosed with ASD. We did have fun too…we painted in the backyard; jumped on the trampoline and swung on the swings…a great sensory diet is fun for all!!

As time passed by, SPD was no longer a jail keeper to our family. We were able to start to go out and enjoy life. This time period was a period of adjustment for us; Mostly me. I had to realize that we were now able to go places and that I did not have to monitor every situation and environment for my children. They were happy and healthy and enjoying life with their family and friends. Meghan was no longer afraid of the world around her. Her auditory and tactile defensiveness had diminished. Michael was not as hyper and he was not always seeking sensory input. We even had the best vacation at Disney World. We were able to enjoy the fireworks, rides, pool, and all the food. (The first time we went; was not such a happy time.) Meghan and Michael bloomed like two beautiful, exotic, but different flowers. I even started to bloom myself. Life was not good…it was great!

Eventually, I felt comfortable enough to ask my children’s swim teacher, Kristy, if she could babysit every Thursday night so I could either go out with Lorenzo or go to a meditation class. (Kristy still babysits for us now. She has been a Godsend.) Now, I was really learning how to sit still and be quiet with my thoughts. More and more I was able to relax and get in touch with my inner-child/self. I became more spiritual and followed my guidance/instincts more often. I was guided to learn Reiki* and eventually to write a children’s book about my daughter to help validate children’s feelings and to share how she triumphed over her SPD.

During this transitional time of rediscovery, Lorenzo and I had another child, Gavin. He is four years old now and was diagnosed with SPD last summer. Presently, he is in his second year of an integrated preschool. He has come a long way and is just starting to blossom into his own exotic flower. Lorenzo too is starting to bloom at this time. Sometimes things can become overwhelming again and I did wonder…”why do we have to go through this again!?!” I do realize that I have to learn and grow more. Through raising Gavin, I have realized my life’s purpose. I realized that my tag line, “Giving inspiration and hope to children living in an over stimulating world,” has a great responsibility and I gladly accept it.

However, I do still have to remember not to let other things take up my time. Often, I get carried away with helping others. I also spend time helping Gavin…after all…it is his turn and my older children get jealous. They go off and have fun with their friends, but still want Mommy time. Lately, sometimes I feel like I have to fight for my inner-self time. Sometimes I feel like an octopus being pulled in eight different directions. I want to feel at peace and then get annoyed if someone pops my serenity bubble.

Presently, I am a Reiki Master Teacher and hold a weekly Reiki Circle in my community with two friends. Guess who’s been attending…some mothers of special needs kids and professionals who work with these awesome children and kids as well. I am still evolving, growing, and learning. I meditate often and my children respect this time that I take for myself. I have been fortunate enough to share what I have learned with others and to teach them how to find inner peace, self reflection and self love. I am grateful for this because my journey and that of my family’s has not been in vain. Our triumph has been a guiding light for others floating in a similar boat. I thank God for listening to my prayers and I will gladly share our story so others can become healed as well.

Life is a journey. Ultimately, if we connect and find that inner-peace/guidance…it just flows better. It is important to carve some alone time to reflect and just Be. I am constantly guided to learn, share, and grow. I realize my purpose and am passionate about it. Our journey with SPD has been a blessing; not a curse. My family has grown immensely because of it. It has brought us closer to the truth, nature, God, and each other. Life is what you make of it. Stay positive and Believe.

Big Thank You from the Ninja

2010-09-27T09:01:00.000-04:00

9,000 clicks on this little blog? Wow, I am seriously blown away. I never even thought that I would be saying that. I mean, at least 10% of it is me refreshing when I update (LOL!) but the other 90%? That's you. That's the universe chiming in.

I have always considered you readers, not fans, and I respect what you have to say and what you have to contribute. I do my best to respond to all emails and comments, as that is pretty important to me. YOU took the time to come to my blog. YOU took the time to read my words and YOU took the time to respond.

I looked at Thinking Person's Guide to Autism the other day and saw that I'm under their list of parenting blogs. Like Keanu Reeves said in the Matrix, "WHOA!" Parenting guide? ME? For REAL?

I mean, I'm just me. I'm just a single mom struggling like everyone else. I juggle about 65 different objects, hoping to God they all stay up. I raise my voice. I let Nathan have breakfast for dinner. I forget to take out the trash. I don't update as much as I should. I don't get enough sleep. I have times where I curl up in a ball with my stuffed bear, Ted, (I've had Ted since I was 15) and whisper to him all the troubles I'm having. I eat Little Debbie Snack Cakes when I'm stressed. I creatively curse in the car.

I am unabashedly and shamelessly imperfect and I like it that way. That's who I am and who I will always be. I am the Queen of Quirk in my circle and I thank you all for joining in our circus of the delightfully crazy.

In October, I will celebrate my 1st anniversary here (Hurray!) and I'm planning some (hopefully) super cool unicorn amazing stuff. I want you all to be a part of it.

If you had said to me a year ago I would be a syndicated blogger and I would have published articles and have interviewed Shonda Schilling I probably would have punched you in the arm and said, "Get outta TOWN!"

Funny how things happen. :) I will continue to work and provide you thought provoking but also entertaining and (I think) unique content. I welcome your comments and questions. I sincerely thank you all for being a part of our world.

The Sound of Silence

2010-09-22T13:10:00.000-04:00

Though we're about Autism and ADHD here at the Ninja, there are other aspects that we deal with as well. One is noise. More specifically, loud noises.

Nathan cannot endure loud noises, whether sudden or prolonged. I am not a fan of sudden noises. When either one of us hears something sudden and loud, we're both tearing our hair out as we attempt to deal with all the sensory overload.

At Nate's afterschool program, they're based out of a gym. In a big, cavernous, echo-y, noises pinging off the wall like sonar type gym. I got a call from the program director (who's also a LICSW) who said that he was overwhelmed from all the loud noises and he had had a meltdown. She wanted to know what kind of things worked for him.

During most loud noises, we're able to deal with it together. He takes my hands and pushes them against his head to block out the offending sound. Now that he's not with me during afterschool time, we needed more options.

I thought about those trendy headphones that parents have their children sport when they want to bring them to see something like Yo Gabba Gabba or Miley Cyrus (I'm SO beyond not knowing who or what is cool, so please, no comments on the music!). He took one look at them and said, "They're too big and too squishy."

Next up was earplug band, where they are attached to a plastic band and you can wear them in your ear and then stow them on your neck to use them as you please. Nathan expressed concern about the potential choking hazard they posed. I looked at my child and wondered who had possessed him.

Third up was plain old ear plugs, the kind you buy in a pinch and in a hurry when you're late for a concert. You can get them at pharmacies pretty easily. You squish them into a small shape and let them expand like a mini temperpedic mattress in your ear. He said, "Why yes, I will try them."

I had picked him up early on Sunday, so we had an hour drive home. I figured he'd get bored of having them in his ear in about 2 minutes and I'd hear the familiar but seriously energy draining sound of the DSI.

He kept them in and he was completely quiet for the whole ride. He spent some time watching the scenery, then mouthing words to a song or a story that he may have had in his head and then blissing out to the vibration of the car. Perhaps he was enjoying it, embracing the quiet that comes with no sound. I think he was able to hear some of his thoughts more clearly. I was so happy for him to be able to have some control over his outside elements.

He used them recently in the afterschool program and they worked like a charm. He didn't yell when he was overstimmed from the loud echo chamber effect the gym has. He dealt with it from a much calmer and more focused place. Something so simple has brought a sense of accomplishment and relief to our house. That you can take to the bank, partner.

Testing Your Foundation

2010-09-19T22:34:00.000-04:00

In Japan, this unconscious (or emo?) catfish is the mascot for earthquakes. Seems catfish get down right agitated when an earth tremble is a-comin' (and there are some legends which describe an earthquake as a giant cranky underwater catfish)

Let's say my foundation has been tested. I've had a stress test with the boy and I have found where I will break. It's the homework. The HOME-WORK. Oh, I wish I could throw the damn handwriting out the frackin' window. It's still the handwriting. But now, I have put up my hands. I am surrendering. I am raising the white flag. Stick a fork in me. I. Am. DONE. D O N E done. Circle the wagons, folks, because we're finished with this rodeo.

I cannot and will not have this affect my family as it has. Right now, we're both on each other's last raw nerve. He looks at me like I'm pure distilled evil. I look at his homework and see there is writing and my stomach lurches like we've hit turbulence. We spend 2 + hours on homework which should take only 15 minutes for reading and 10 minutes responding. It's a NIGHTMARE.

There are so many things going on in his brain which PREVENT him from doing this. I have seen it, I have observed it with my own eyes. I know he is struggling with this. I am tired to the marrow of my bones. I will not let this thing of handwriting ruin my maternal bond with my child. And believe me, we were on the Express Train to Utter Ruin. I dropped him off at school on Friday morning, practically in tears, feeling myself slipping into a very deep and very depressing hole. I rallied and called my best friend, who talked me through it and helped me shut the door on that disaster.

This homework fiasco came close to destroying my family. I won't let it happen. I just won't.

I know he has the skills to write. He's able to do math and answer simple questions on a worksheet. That whole creative process? It's trying to use rocket fuel in a compact car. Too many things happening at once and then it's DANGER WILL ROBINSON!!!

I know he's SPED and that there are things he can do and can't do. He can't do them together right now. I was looking at it from the perspective that he couldn't write at all or think creatively at all. Not true. He's very able to do both, just not in sync.

So, I wrote to his teacher and explained that I have tried everything that I can, and we're still struggling and I need help. I have tossed the yellow flag on the 10 yard line. I want to talk options. I want to discuss alternatives, because the plan we're using does not work.

I want to find something that does work. My son's happiness is paramount, not some old fashioned ideal that he must rewrite the Magna Carta in calligraphy to succeed. He knows how to write, and with time he will write better. At this moment, he is struggling with making his pen write the magic in his brain, as they don't speak the same language. If I could insert a Babel fish into his arm, I know he would be spilling an incredible feast of creativity. Since this is not a Douglas Adams novel, I work with what I have.

It is okay to admit that I hit a wall. I am not SuperMom, and neither are you and we do super human things almost every day but even superhumans need to admit when they may need help. And I have and I did and I feel more empowered by it.

You should, too. Go, ask, do better.

(Micro) Interview with Shonda Schilling!

2010-09-08T13:00:00.000-04:00

Now, I'm a New Englander and the Red Sox are HUGE here. One of my favorites is Curt Schilling, because he was such a fighter during the 2004 World Series.

I mean, check OUT his sock! This was blood from the now famous Schilling Tendon Procedure which they did to keep his tendon from shifting around. The K ALS is a "knock out ALS" or Amyotrophic Lateral Sclerosis also known as Lou Gerhig's Disease. Gerhig was an incredible baseball player and a huge influence on Schilling. One of his children's names is Gerhig.

So...when I find out that his amazing wife, Shonda, has written a book about her son, Grant, who has Asperger's...I get a CRAZY idea. I tried to find a way to ask for an advanced copy of the book so I can read, review and possible interview her. I mean, we had Boston, ALS (my mother and uncle had it), the Red Sox (my sister's husband works for them) and Asperger's Syndrome in common, I felt that my odds were still slim, but I had a small glimmer of hope that something awesome would come from it.

I did manage to get in contact with her, via her publicist, and she graciously sent me a copy of the book, which was poignant and touching. I was beyond psyched! This was an incredible event for me. I had asked kindly if I could get an interview with Mrs. Schilling, just a few questions. Again, I didn't think that I would ever get my questions answered, but gently would touch base with her publicist and see if she would.

Well....my questions were answered! Please enjoy this amazing micro interview with Shonda Schilling!

1: Were there days you just wanted to throw in the towel? How did you get through those times?

Before the diagnosis there were many. I could not wrap my head around his behavior and was at a loss for what I could do to make things better. Afterward the diagnosis I learned to take deep breaths. I accept that sometimes things might not go as planned and plan b would be in effect. Not that it doesn't frustrate me or make me sad or catch me off guard, it is just my life now.

2. What are your biggest challenges with Grant now? What are your hopes for him in the future?

Right now it is getting on a schedule for school. Reading doing homework. He is in 5th grade now so the way he talks to adults sometimes is our new challenge. I think he thinks he is one. And always being flexible in any situation.

A post interview notation: I have nothing but respect and admiration for both Curt and Shonda Schilling and their stupendous publicist. I am deeply honored and grateful for this incredible opportunity. I LOVED learning about how a public figure dealt with such a discovery about their child and how the family rallied together and became even stronger. Being stronger and building our foundations is part of our Autism community and I am proud to be able to share this with the world.

3. What was the most difficult part of writing the book?

Waiting for it to come out. I was so afraid that people wouldn't get that this book is a book of love. I was hoping they could see through the stereotype of me as a baseball wife and see that I had a beautiful story to tell. I had the support of my family all I had to do what write from the heart. When you do that the words come right out!

State of the Nathan

2010-09-02T10:26:00.000-04:00

A quick post about Nate's 1st day of school. New school, new teachers, new kids, new after school program. It was an amazingly huge amount of NEW to deal with for my guy. He handled it like a ROCK STAR. No phone calls, no notes home, no picking him up in a sobbing hysterical heap of sad panda face. We celebrated by having delicious pizza and watching "Dog The Bounty Hunter".

I am astounded by his resiliency right now. I admire his efforts to keep him self calm and focused when everything is unfamiliar. I think I had more anxiety than he did, but I had taken steps to process all the NEW first in order to be an oasis of tranquility so that he could feel regulated and safe.

I think that aspie kids, like infants, can "read" you before you realize that you're in a state of sweating panic. (Yeah, sweating panic-ers! Testify!) I continually try to learn new strategies to help guide Nate through these difficult times. I admit I've been a little hovercraft-ish these past two days, but I am learning to let go and giving him a chance to use his social skills first. If you teach them skills, but don't allow them to put them into action, they don't get used. And then they'll cling to you more and do less for themselves, which defeats the purpose of teaching them these independence building social skills.

So, in brief, he's adjusting very well and is being a social ninja, putting his mad skills to work. He is happy, smiling and talking to me about his day. I am so proud of him I could literally burst.

Taste The Rainbow: A Review of Asperger's Are Us`

2010-08-31T23:10:00.000-04:00

I had the distinct pleasure to experience "Asperger's Are Us" this past Sunday in Salem, MA, and to be honest, I didn't know what to expect. Noah Britton, co-founder (and fellow ARC counselor), has a very dry but sharp sense of humor. I was very intrigued, as were my fellow audience members. Some friends from the ARC joined me in the front row as the room filled quickly with family and supportive friends.

It was truly FUNNY. I mean, tears running down my face funny. One skit had Bill O'Reilly, Barney Frank and Tim Russert, where Frank & O'Reilly went at each other's jugular verbally and Russert's dead body was dragged from the room. Another one had a man sitting at bus stop and people kept jumping into his lap saying he was Santa. The third one looked like this:

I apologize for the muffled sound. My Canon does great spur of the moment video, but if it's not up close, the sound gets lost in the vacuum of space. However, it is still a piece of brilliant work (minus my obvious laughing).

It's been said that Aspies don't have a sense of humor. I don't buy it. I work with kids like this and I've seen some pretty amazing comedy come from them. Their humor is what they are exposed to, what they learn to appreciate that is funny. Nate has been familiar with my theater and improv work since he was 5 months old. He is slowly learning what is "funny" to him and his therapist says his sense of humor is "tremendous".

Now, to be fair, there were a few bits I didn't get, which I chalk up to it being pure Aspie humor and genius that only those with the Syndrome can comprehend. They had a few awkward pauses, a few glitches. That being said, it was 45 minutes of very entertaining comedy (it was rated PG-15) that I would have paid more for than I did. You didn't have to be neurotypical, or working in the business or be a relative to appreciate what was in front of you. Laughter is the common thread that brought us together and we all ended up speaking the same language that day.

First Things First: New Article by Amy Sheridan (That's Me!)

2010-08-26T06:54:00.000-04:00

SICK AND TIRED:
How A Single Mother of a Special Needs Child Deals with Sudden Illness
an article by Amy Sheridan

As parents, we always worry if our children get sick. That’s part of our job. We are
prepared before they are even born, having been told countless stories by our parents, friends who have children and sometimes, complete strangers who are more than happy to spin the tales of their children’s maladies.

But, no one ever truly prepares you for the time when YOU get sick. There is no chapter in the Parents Handbook that tells you how to prevent or be ready for the time that you need to be taken care of. That’s usually not an option. Moms, Dads and caregivers are certainly known for working when they are under the weather, but there may come a time when you have to actually go to the hospital. In most of these incidents, the other parent will take care of the child (or children) while the other parent is ill. But what if you don’t have that choice?

I’m a single mother of my son, Nathan, who has Asperger’s. When I was married, and a trip to the ER was necessary, my husband did the honors and took care of our child while I convalesced. I had been lucky for the past few years, not having any major illnesses that would put me down for the count. This one, however, came quite out of nowhere.

It was July 2009. I was working for the ARC in their summer camp that year. I remember getting into a minor fender bender on July 12^th, which was a Sunday. I am a very good driver, so this really threw me for a loop. I recall feeling a little fuzzy in the head before the accident, so I wondered if maybe I was tired.

The next week, on Wednesday, I started getting some lower GI problems. It was hot that summer, and our rooms at the camp had no air conditioning, so this did not surprise me. I am sensitive to high temperatures, so my body normally reacts this way. I knew to keep hydrated and not to worry if I was not eating.

By Saturday, my symptoms had increased significantly. I was eating next to nothing. I tried to keep as much water in my system, but it wouldn’t stay in. My skin started to tighten around my hands and my feet, a sure sign of dehydration. I checked my temperature, but I showed no signs of fever, which would indicate infection. I couldn’t sleep at night, as I was making almost hourly trips to the bathroom. Monday rolled around and I was barely conscious at camp. It was a really hot day, and I was in the lunchroom, almost to the point of fainting. I truly wanted to let my body go and pass out, but our kids had autism, ADHD and bipolar disorder and I thought it probably wasn’t a good idea for them to experience me in that state.

My co counselor said, “Amy, you look awful.” I said, “Yeah, I feel pretty awful.” He said, “You should go to the hospital.” I knew I was very close to that point, but then it hit me. Who would take care of Nathan? Who would get him? Who would be able to explain to him what happened without him getting upset? That thought was too much trauma for me to handle, so I asked my co counselor to get me a popsicle from the kitchen. I promised if I didn’t perk up after eating two popsicles that I would go to the hospital, secretly hoping that I wouldn’t have to go.

I rallied enough to make it through that day and to go to work on Tuesday, the 21^st. I still was feeling lousy, but had a lot more energy than I had, which I took as a sign that maybe I was finally past this illness. Later that night, around 11 P M, I was woken up from a sound sleep by the most intense abdominal pain I had ever experienced. It felt like someone had taken a knife and had split my stomach open and the contents were burning my insides. I was terrified. I went through my mental list of people I could call. Nathan’s father was over 70 miles away, as was his grandfather and grandmother. Both of my sisters were quite far from where we live. I thought of my best friend, J.T., who only lived 10 miles away. I was worried that I would wake him up, but I was also starting to panic, as I needed to know someone was going to take care of Nathan.

I called 911, trying not to cry while I was talking to them. I then called J.T., who told me it was very okay to call him at 11:45 pm with an emergency. He said that he would meet us at the hospital in 30 minutes. I can’t even describe how much relief that gave me, knowing that Nathan would be with some one he knew and felt comfortable with.

The ambulance arrived and they were so wonderful with the both of us. Nathan was so brave, as he held my hand as I was wincing in pain. I kept my face as calm as possible, so that he didn’t know how much distress I was truly having. 10 minutes after we arrived, J.T. showed up and I just started weeping. Tears fell down my face as he hugged me and said, “Its okay, Amy. I’m here.”

I discovered that I had been exposed to fresh water bacteria (by drinking water from a system with older pipes), which my doctor proudly announced that he had never heard of it and had to Google it. I took two days to recuperate, which I was in and out of feeling tired and nauseous. They gave me Ciprofloxacin, a strong antibiotic. One of the side effects is sensitivity to the sun. I spent two weeks sympathizing with vampires, feeling like my flesh was burning off during daylight hours.

This experience was one I definitely do not want to have happen in the future. I think if I had been a bit more proactive and had gone to my doctor earlier, even without signs of infection, he would have treated me and I wouldn’t have had to go to the ER. I think as parents we neglect ourselves and focus all of our energies on our children, which is very common. However, if we do not take care of ourselves, we are not the only ones we put in jeopardy. Special needs parents truly have to go above and beyond what is necessary to ensure their good health and well being. Since then, I have made sure that I have more than one person I can call if there is an emergency. I have also taken better care of myself, so that I will minimize the possibility of a repeat performance. I learned my lesson in the hardest way, but have taken steps to ensure that I will be more prepared if it ever (hopefully not!) happens again.

Nathan Can Change the World

2010-08-20T22:38:00.000-04:00

Nathan's summer is winding down, and he's starting to get "done". That stick-a-fork-in-me kind of done. It's been a challenging summer for the both of us, and we've both have been working really hard with situations that we struggle with. For me, it's interpersonal professional relationships and remaining flexible when in the midst of mummifying anxiety. For Nate, it's been dealing with losing.

We've dealt with this subject before. It's something we've wrestled with like a chained bear, only to be left on the mat bruised, bloodied and defeated. I try to use every possible moment as a teaching moment to let him know that losing is a part of life, being a good sport is better, you have to learn how to lose and learn how to win. He responds by rolling his eyes and then looking at the wall while the rest of the conversation looks like this:

Nathan has had a hard time with competitive games. They touch every negative button on his control panel. It messes with his desire to be first all the time, every time. He's a perfectionist, so if he doesn't do something with laser like precision on the first try, the world ceases to make sense to him. (I stole that last bit from my friend, Kate. Yarrr!) I truly wish he could learn this like they do in the Matrix; Trinity asks for the schematics for a helicopter and it gets loaded strait into her amygdala.

Since we don't have that technology, we have to do it the hard way. Where there's crying, and screaming and misunderstanding of the world. I dislike that. I also dislike having to teach my kid to deal with being competitive. Because it SUCKS. I SUCKED at competitive games. Still do, to an extent. I am more aware of my abilities and know where I can shine and where I should just sit my butt down.

Nathan is still figuring that out, and he is becoming more aware of his weaknesses and strengths. I talked with his therapist about dropping him from actively being a part of competitive games. He's getting the same social pragmatics of being with other kids. He has to work together, he has to play fair, he has to be respectful. That's hard work on it's own. Mix that in with him trying to compete in a game. It was making him sad. And it wasn't every game. It usually involved a ball, usually a football. I totally understand. I am not fond of an object being hurled in my face, imagine what his brain is processing when he's trying to do about 16 different things at once.

After giving him the option to pass, he was improving a bit at camp, coming home a little less sad. He was still involved, he would cheer on the sidelines, go catch a ball that went out of play and would join in on occasion.

We've upped his Concerta a few days ago (he's been at his current dose for almost a year and he's grown over 6 inches), and we are watching him for showing any zombie (very sleepy) like behavior, loss of appetite, etc. I noticed him being more talkative, engaging me more in conversation. We played a game the other night for over an hour, where we used action figures on an incredible adventure that came from his imagination. We've been able to actually talk, and not have the blah blah blah.

Getting back to the focus of the story, I picked Nathan up early today. They had their "Olympics" at camp and I was like, "OH boy...." His counselor said, "He was in a race, and he didn't win....and he was okay with it."

I didn't realize that my hands had been clenched the whole time. I let go and my shoulders relaxed and I looked at Nathan and said, "Is that true?" He looked RIGHT at me and said, "Yeah, Mom. I didn't win. And that's okay. I'm changing myself. And I can change the world."

I felt the tears blossom in my lower lids and I waved my hand in front of my face like you do before you break down in hysterically joyful pride. I managed to keep my composure and my boy came over and gave me a hug.

I can't say what got him to this point. Was it the repetitive messages of being a good sport? Was it giving him the opportunity to observe sportsmanship outside of the game first so he knew what to expect? Was it the higher dose of meds that maybe gave him a bit more clarity and focus?

What I do know is that sometimes I talk too much, and that I tend to use every moment as a teachable moment and that can become just noise. I needed to focus and shorten my message. I needed to give him the tools he needed for his social tool box and let him try situations on his own. I had to give him his own line and see what he was able to catch.

And he caught a freakin' MARLIN.