Tuesday, February 23, 2010

autism days

The amount of time I live autism is not very well reflected in my blog postings. Probably because when I sit down to write, I want to not think about autism.

But if my thoughts were recorded on a pie chart, Noe's autism would make up the largest portion of the circle, and everything else would be small slivers. Let's just say you would be a very obese person if you ate my piece of autism pie every day.

And I tend to have one of three days related to Noe's autism.

angry autism day. This is usually triggered by an especially difficult day with Noe or some other factor related to his autism that goes wrong. For example, last month his lead ABA-VB therapist called to tell me that she may have to leave his program for personal reasons. It would have essentially ended his therapy program and I would have been left to start from scratch or wait until next fall to continue with another doctorate student. Luckily, this had a good ending and she is still with us, but not before I had a full-on panic attack that ended with the worst migraine of my entire life. These days are infrequent (and becoming more rare), yet very intense. I curse autism and often cry and stomp around my bedroom unless I am able to escape the house for a run or bike ride. I often feel a lot of self-loathing....Why did this happen to us? What did Noe do to deserve this? On these days, autism feels like the worst possible life sentence.

average autism day. This is most days. My life feels normal, blessed in fact. Noe is Noe. He has his struggles and issues, but so does every other kid. While some kids take tennis lessons and go to chess club, Noe has speech therapy and ABA-VB. It is not torture for him. In fact, he looks forward to seeing his therapists and working on the activities and lessons they have prepared. He makes progress, but it is often hard to see day to day.

It is always interesting to run into a parent at Noe's school that I know from somewhere else, such as from Asher's preschool, or my job, where I tend to meet lots of hyper-academic parents. They are excited to find out I have a child at the highly-regarded school. Immediately, they want to know his teacher, whether or not he is in the GT (Gifted & Talented) program, etc. I tell them, without any self-consciousness (I am SO over that) that Noe is in the autism program. And then I get the look. Often enough, I have to remind myself with a bit of amusement that the look I am seeing is.... PITY. Why do you pity me? I want to say. I have the best kid ever. Not that he doesn't cause me a lot of worries, but he really is great.

super autism day. These are also pretty rare, but special. These are days, actually moments, when I get a glimpse into Noe's soul and see unlimited potential and his true autism-free self. Sometimes it is a knowing smile he gives me. Often, he is riding his bike and his autism just slips away completely for a few precious moments. These are also the days when I can step outside of my every-day life for a moment and see the ways I have experienced true personal growth as a result of dealing with Noe's autism over the past five years.

Would I trade the past few years of "personal growth" for a more average parenthood experience? In half a New York minute. For my sanity as well as Noe's well being. Accompanying my exponential personal growth curve, I've also experienced some nasty side effects, namely a rather jarring crisis of faith and enough anxiety to keep an entire Paxil factory running overtime through the recession (full disclosure: I am actually not on any anti-anxiety medication but probably should have been at various points over the past five years).

Once in awhile, I will be in the bathroom and suddenly I will pull my hair back tight and examine my face in the mirror. The permanent dark circles under my eyes. The strands of gray hair making an early appearance. The worry lines. I swear I can almost make out the word autism written on my worry lines.

These are my days, a new path, our new journey. And I have to say, the view along the way is pretty damn amazing.


Anonymous said...

Excellent writing, thank you! I'm currently doing an internship at two elementary schools in school counseling and have met with kids who have autism. I understand your challenges and applaud your's and Ed's great efforts for your child.

Thanks for writing ... I'm going to print this for my counselor supervisor.

Tim S.

Erika said...

What a great post. Thank you. You're an amazing mother with an amazing family and I'm happy to know you.


Jen...your ability to write your feelings is always so deep and rich and tangible for me. I love the perspective of Noe is Noe, which he sure is - perfectly. How amazing to get those glimpses into his eternal soul...those times that autism isn't the barrier and he shines through. Those moments must be pure joy as a mom!

Belle said...

Hey Jen--I love the way you've identified and described the three categories. I can see the exact same kinds of days with my kids. I'm sure that it's much more intense with a special need child. I hope you are in an overall good place right now personally. Raising kids is hard no matter what, but you've really eloquently captured the extra demands of having a child with autism.

Melissa said...

Jen, this was really beautiful and moving. Thanks for your honesty. Noe is a really incredible, funny, sweet kid -- we have always known that. He's fortunate to have you and Ed in his corner. And I totally feel you when you said this has made you grow a lot but that you would give up the growth in a heartbeat if you could! You perfectly summed up how I feel about most life obstacles. ("This has made be a better person, but it still totally sucks!")