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Sunday, May 30, 2010

Changes



Here is Nathan at his school play  last year. He was in "Ananzi and the Moss Covered Rock" as an elephant. He struggled so hard to stay focused during the performance, but he did a good job. This was just after he started on Risperidone and before he started on Concerta XR.

Now, a year later, after having great responses to the dose he's on, I'm noticing small changes in his behavior.  He's not able to keep himself in check for as long as he used to. He is having a difficult time at school, especially with tests. We're three weeks away from the end of the year. He doesn't have any friends which he can socialize with on the weekends. It's hard for him and that makes me sad and guilty, wishing I could do more. My concern is that he may need his meds tweaked and it pains me that I feel like I failed, again. 

I got the hairy eyeball from a woman in the grocery store today as we walked (or more specifically traipsed) through the Organic aisle.  Nathan wasn't doing anything wrong, not by a long shot. He was being watched, he wasn't tearing things off the shelves. He was humming as he walked, randomly touching things, saying "excuse me" if he bumped into someone. So why the stinkeye? I have no idea. I almost went up to her and asked, "Is there a problem?" and yes, I totally would have verbally sumo wrestled her if need be. 

I have been too hypervigilant with Nate as of late. Too worried about what other people might think or might say. I think all of us who have aspies or kids with ASD can be. I had him out of his element yesterday, but even with that, he rallied so well.  So, today, when Nathan asked, "Mom, can we make s'mores?" I didn't say, "No, honey, it's not on my diet (which it isn't)." I said, "You bet!"  I followed some very good advice and cut him some slack, and I gave myself some, too. 


He hugged me as he ate his s'more and gave me a marshmallow covered kiss. I told him how awesome he was and he told me that he loved me. Nothing beats that right now. I marvel at his amazing heart and his capacity for compassion and empathy. He asked me to join him in watching him build some Legos, and I did.




We also managed a couple of other pictures:


T

That is the sweet one, this is the goofy one:




Grade A Ham, right there!

As we go through this phase, we are preparing for another phase of our lives. Summer vacation and then the fall where a new school and friends await Nathan and I will tackle my goal of continuing my education. It's more daunting than I thought, but I have opened that door, and I intend to continue through it.

With my introduction of NSASA, which is very close to the ASA (Autism Society of America) I am now referring to it as Autism Nation, which is as diverse and inclusionary name I can think of!  I am announcing the first meeting very soon, sometime in June, to go over what we're about, which is about parents and children. I want to know what your needs, concerns, desires, questions all are. I think that is the best way to serve our local Autism Nation. (I mean, this IS Red Sox country!) 



I think I must be nuts, but you know, great things never happen with rational thinking. ;) 

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11 comments:

  1. I can so feel your pain. People in public can be so cruel to our children. My middle son would get mocked by grown people or they would have to become the town crier when he did something "not normal"...It was so hard not to lose it with these people and still today I find myself reliving the scenarios with different outcomes. You have to focus on what's important in that minute tho. For me, in that minute, I didn't want my son to feel bad, abnormal, or as if somehow this person had control over making him a villain. You did the right thing in the moment...give yourself that!

    The end of the year is hard here too. The impending changes...oh how they hate change! My middle son is the worst with it. So I work harder to keep him out of noisy, crowded situations. Keep home quiet and offer lots of bubble baths.

    I don't "know" you but what I see here you're a great mom and you are doing a fantabulous job and Nathan appreciates it more than you will ever know ;-)

    Thank you for sharing!

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  2. As an elementary special needs teacher who teaches several and raises one aspie, let me assure you... All kids, especially those on the spectrum, have more trouble at the end of the school year (and right before winter holidays and at the beginning of allergy season). I've been through an inordinate amount of spinning, chewing, sound effects, irrational grumpies, don't-touch-me's and random exclamations in the last few weeks. I'm surrounded! In my humble opinion, wait on altering meds until you're sure it's not just an ASD-amped case of end-of-the-year-whackies.
    Good luck on the continuing education. In what direction are you aiming?

    (And can I say yet again... I swear sometimes that you're watching MY house when you write these!)

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  3. Gee! I loved the TWO pictures - the goofy one is hilarious! As for the woman with the "hairy eyeball," it has taken me a long time to realise that people behave poorly because things are not going well in THEIR life. That is, it probably had nothing much to do with you and your lovely son and ALL to do with her and her life. Respectfully, cut her a little slack if you can. There has been a whole lot said about "Things are neither good nor bad, but thinking makes them so." YOU are doing a great job and have a great sense of self. Great read. Thankyou.

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  4. I'm in Hartley's blog carnival and just found you via the carnival list (how could I NOT click on the one named 'Asperger Ninja') and you and Nate remind me SO MUCH of my Simon and me. SO MUCH. Right down to the necessity of one regular and one goof-off photo.

    On smores and watching lego: It feels good to just say "yes" doesn't it? I was putting Simon to bed tonight and he asked for an extra cuddle, but there is so much to do in the evening - the only really productive time of day for me - I said no, not tonight lovebug. And INSTANTLY I regretted it.

    But I did that weird ignore-your-inner-dialogue thing we humans do, and I still came down to get my work done. But tomorrow, extra snuggles are my top priority. How soon it will be when we are old and wrinkly and longing for s'more moments and sticky kisses? Eat them up!

    Caitlin
    www.welcome-to-normal.com

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  5. Just saw this on Hartley's blog and thought it answered many of the concerns in your post and supports Megan's comment: http://www.hartleysboys.com/2010/06/its-not-regression.html

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  6. @ Caitlyn: It's so nice to be supported! LOL Especially when it takes my subjective observations and makes them sound all fancy and measurable!

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  7. I am so familiar with the hairy eyeball. I let it affect me internally way too much, but I'm working on it. The worst for me isn't strangers, but family who doesn't understand.

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  8. Lora, I used to be the same way (I think we all are at least in the early stages). Then I decided I had enough important stuff to deal with, and needed to prioritize: http://www.welcome-to-normal.com/2010/03/dont-fix-whats-broken.html

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  9. @Lora: Yes, the hairy eyeball is one I get often, and usually ignore it. But this one was particularly obnoxious, she just bore into me with her eyes, like I was such a horrible mother. It took a lot to hold back!

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  10. @Caitlin: I get a lot of people telling me that my dialog is so similar to theirs, so at least I know that I'm not going crazy! :)

    And yes, I'll take all the sticky marshmallow kisses I can get!

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  11. @Meghan: End of the year wackies: Fits us to a T! And thank you for the reinforcement that I'm not alone going through this phase. I always feel like I am and then I realize that all of my other kids (My Y & ARC kids) go through similar things, they just don't all present in the same way.

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