Tuesday, April 7, 2015

Who is my son?

April is here again, and it is autism awareness month. I just placed the t shirt order for our local walk. we use it as a fundraiser for an Autism center that helps kids like mine. I thought now would be a good time to write some things down. This is raw, and honest, and probably not politically correct, but what I say is directly from the heart. This is MY personal journey, and unless you can fully say you walk in my shoes, you have no right to judge. I do want to share this, so that if there is some mom out there in a similar situation, then she knows she is NOT alone.

Around Christmas time, I was asked a very poignant question by a well meaning friend. I was at a Christmas party for a local business group that my husband is involved in. It was probably the first time in a few months that I had been without children. I am pretty open with most everyone of my oldest son's diagnosis. I frequently speak of the differences that exist in our household, some of the common struggles and frustrations and his challenges. This friend simply asked.... "So, you talk about your son's diagnosis a lot, and what he does that is different, but besides having autism, who is he? What does he like? She said she has spoken to a few other families and they always talk about how their kid loves this or that.... Like one kid is really into playing the piano.

I recoiled. I didn't have an answer. See, I have spent the bulk of the last 4 years just trying to survive the craziness. He has daily meltdowns. At least once a week, we have a poop art incident. Some worse than others. This week, my husband got the brunt of it while I was grocery shopping. It is a rare treat when I can do that unaccompanied. Our son pooped in the laundry room. Our dog ate some of it and had it ALL OVER his fur. The dog jumped on couches, ran under a bed, and our son tried wiping with his bare hand and ventured into the kitchen before my husband even knew something had happened. While cleaning up the mess, I arrived home and my son, dressed in his new clean underwear darted past me and escaped down the street to go roam the neighborhood. He is impressively fast, but doesn't think twice about running into roads. I have learned how to (softly)
tackle like a defensive lineman and hold the speed of a runningback to chase him down. His life literally depends on my ability to protect him from harm. It took hours to return to some form of livability for an incident that probably took 2 minutes or less. There is an incident, not always poop related, but something like this that needs prompt attention and takes several hours to resolve EVERY SINGLE DAY. Sometimes it is a self injurious meltdown, sometimes poop, or chasing down dogs that have been let out of the yard. I promise, if everything I have seen in a week could air on TV, it might make for the best comedy/drama/horror show ever.

I expend so much energy physically and mentally just trying to keep this boat afloat, that I haven't been able to look out at the sea and watch a sunset. I don't know what his favorite color is. I try and do the best I can at guessing what toy or cartoon he likes best. Most of what we have purchased for him, he either shows little or no interest, or they are therapy type items... Things that help him calm and cope with the world.

With my younger son, I know his favorite food, color and TV show. I know he loves any sport involving a ball. He tells me about his friends and what he did in class. He has his own ideas on what he wants to wear. He is awesome when it comes to learning about shapes, letters and numbers, and is weaker when it comes to handwriting skills, sitting still, or listening to authority figures. He is bullheaded, go figure!

Things that a mom would normally brag to friends about, I felt I was simply short when it comes to my oldest. I felt for a while that I had to be the worlds worst mother for not knowing these things about my firstborn. I mean, how can I spend so much time around a child and NOT even learn this. That is when I had a revelation. My list is always going to be different, and not exactly explainable or comparable with him. His diagnosis is going to be woven into every aspect of his life, no matter how much I want to just say that autism doesn't "define" him.  So, here is what I know about my oldest:

He isn't much of a talker. Less is more. He loves being squeezed, cuddled and softly scratched in the small of his back. When he likes a food, he wants to eat it morning, noon, night, and any time he requests it. At some point, he will lose interest in that food, and the case of stuff you just picked up at Costco is nothing more than a new box taking up space. He still prefers diapers over underwear, but
will wear underwear "if he has to". He likes riding horses bareback. It calms him so much! Jumping
 is a favorite pastime, as well as running into walls at high speeds. He gets a kick out of watching motorized things work. Once you think you have put something out of his reach, he is a master at solving that "problem". He loves his brother, his dogs and his daddy, but I am probably not his favorite "unless he is sick or hurt". He is a huge fan of water....Swimming, splashing, water guns, spray bottles, the water hose. He prefers nudity over any type of clothing.

With all of that said, it is a great list, but EVERY SINGLE one of the things I have learned about my son seems to be a "red flag" for autism. So, for me, when I am asked, "other than autism", what kind of kid is he, I don't know how to answer, because it is literally like the books and diagnostic manuals about autism are documenting my son to a T. I may not learn some things about my kid, like his favorite color, but who cares? My favorite color changes all of the time! autism describes my son, his life, likes, interests, and struggles. I am ok with this, because beyond the label is a life. His life. Autism has been Written about and studied for the last century, it is like a mythical creature or unicorn.  No one exactly knows what causes it, or can pinpoint specific traits that apply to all people with autism. So, let the label "define" my child with this mythical title. I happen to think my son is pretty awesome.