This picture truly sums up what my life has been these past six months. A BLUR. A wonderful, delightful and exciting blur with so many incredible things that have happened. And some things that sucked mightily.
It started after Nathan got out of school for the summer. I was working for the ARC, which was very intense, but very satisfying. During camp, I managed to catch a double infection. I fought the infection because I didn't want to take any time off. Time off is not a luxury I usually have. Eventually, my body showed me who was boss and I ended up in the ER for 8 hours and stayed home for two days. I have never felt so ill in my entire life, not even during my pregnancy. It was AWFUL. I was fortunate enough that my best friend was there to help me through it all.
So, as the year draws to a close, I figure I should get a check up. I know I'm not completely up to snuff. I feel I have gained weight (which for a gastric bypass patient, it's like a kick in the face) and I'm exhausted all the time, and I'm not eating or sleeping like I should.
I find out I've gained ALOT of weight. (Okay, alot of weight for me, but still...) My hair is falling out and breaking off at a much more alarming rate than I'm used to. I have more bags under my eyes than Logan Airport's luggage carousel in Terminal B. I'm sleeping maybe 6 hours a night. My doctor looks at me and she says, "You've got a special needs child, don't you?"
Is it that obvious?
The New York Times says that it's not just the daily routine of having a child(ren) with autism that causes stress. "The parents in the autism group had higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism. They had higher levels of stress, but the relationship of the stress to problem behavior was different."
It is hard to explain. It's like this evolutionary stress we as parents with autistic children have come to develop. We have learned to adapt to our children, not to have our children adapt to mainstream behaviors. We try to have them emulate and adopt these behaviors, but in the beginning, we need to find out what they need and how they operate first.
Some may say we're putting the cart before the horse. I would argue we need to know what the heck the horse has in that cart before we make it go on a journey.
This article, which my best friend gave me, shows how Elizabeth Scott quit her job and spent 10 hours a day doing 78 different language drills to help her son, Roman. There are dozens of other stories like this one, where we as parents of autistic children do what seems like impossible feats. To me, and perhaps to others, it does not seem like much. We do what we need to do for our children.
I gave up a decent paying job in Boston to focus my energies on my child. I make 1/4 of what I make now. I take him to every appointment, am there to drop him off and pick him up from school. I am active with his IEP team on a daily basis. I try to utilize every situation as a teachable moment. I try to encourage and not degrade. I have to be on. I have to be alert. I have to be organized. This is not the easiest trifecta, let me tell you.
Did I mention I'm a single mother, too?
With all of this well choreographed chaos, I was feeling more drained than I normally do. My doctor told me, "All mothers, especially ones with special needs children, put themselves last." She asked me if I had anxiety. I burst out laughing. "I am the QUEEN of anxiety." I crowed. She asked me how I deal with it. I told her, "I really don't know." And I don't. I just do. I do what has to be done and don't consider the costs.
But, I must take care of myself.
And this week, strangely, I have been. Nathan is with his father in Florida for the week. My body has been getting enough sleep (funny, who knew I needed 9 hours instead of 6?). I have been taking the time to really eat my food and not inhale it like a Hoover. I took a 10 minute shower instead of 3. I ate 3 Candy Cane Joe Joes. (Man, were they decadent!) I'm slowing down. The last time I took a vacation was April 2009. It was a few days, if I remember. All I did was sleep, read and maybe go to the movies. It was what I needed to do to take care of myself.
Guess I've forgotten how to do that.....
In the new year (or earlier), I will be addressing these concerns. I am hoping to take yoga (even if it's a DVD at home). I will be working in more walks, more journaling, more reading of delightful books. Things that are essential to me as air is. Well, not on that level with yoga, but I've heard it's darn spectacular.
And to all you moms, dads, brothers, sisters, caregivers, remember....if you're not taking the steps to make sure you are 100%, how can you give 100%? I've been working at a deficit, too. Let us all remember to sit down, have a cookie, close our eyes and take a breath.
Just keep breathing.