I learned something today. This is saying a lot because on most days, the only thing I feel like I learn is that sheer mental exhaustion can’t actually kill you. But today my brain accepted a new fact: My son has Aspergers Syndrome. We got the diagnosis almost two years ago, but as we’ve established, I’m not such a good learner.
When my son was first diagnosed, I brushed it off. See, I provide behavior therapy for children on the Autism Spectrum and have done so for ten years. So when I started seeing early warning signs in Joey, I attributed it to my overly sensitive perceptions.
Then his 3-year-old preschool teachers sat me down for what I thought was a parent/teacher conference and basically read a “Does your child have Autism?” checklist to me, claiming that Joey exhibited most of the symptoms. I was furious. How dare they try to educate me on Autism? If my kid had Autism, then I would know, dammit.
Looking back, it’s obvious that they were ignorant and new to the whole, “let’s try to break it to this parent that their child is NOT NORMAL” thing, and instead of really picking out examples of Joey’s concerning behavior, they decided that this generic list would be easier. It made it very easy for me NOT to believe them though, because I knew for a fact that my son did not “flap,” so I could also deny all of their other claims and file them under, “you are just preschool teachers who don’t know my son and couldn’t diagnose Autism if it flapped you in your stupid faces.”
So I cried and I called a friend and colleague of mine whom I trusted to do an observation of Joey in his classroom. She sat down with me at Panera Bread and since she is the sweetest person who ever lived, she validated my feelings by telling me that the teachers did, indeed, suck and that Joey was basically being ignored and that if he had a little one on one attention, he’d probably do fine. We discussed how getting Joey evaluated wouldn’t hurt and since you can diagnose a brick with Autism in the state of Pennsylvania, he’d most definitely qualify for services, and having a therapist in school couldn’t hurt him, so why not?
Joey was evaluated in January of 2013 by a doctor whom I had previously worked with and was fairly certain would do whatever I told him to do. And he did. At the end of my description of Joey, his exact words to me were, “So what do you want, Jess?” Ha! I knew it! This wasn’t about Joey ACTUALLY having Autism, but about me being a super parent with inside connections and information that would give my kid that extra edge in this life. So I told him what I wanted: An Asperger’s diagnosis and TSS services in preschool along with Occupational therapy. And that’s what I got.
My OT was an angel that Baby Jesus sent down from heaven and my son fell madly in love with her instantly. She taught him how to climb and balance and write and cut. He was suddenly able to play on the playground with the rest of the 3 year old boys and could write his name and draw pictures. She helped him tolerate and accept some new food items which was like a miracle in and of itself. My TSS was funny and friendly and knowledgeable (and a boy!). He helped Joey crawl out of his shell and play rough and rowdy with the other boys (which although the teachers might not have appreciated, I loved with the burning heat of 1000 suns). His Mobile Therapist was so damned prepared and interested and effective (and sweet) that she made me feel like a shit at my own job. Regardless of my own denial of the real issues, these people were and always will be a blessing in our lives. My gratitude does not translate into words.
And it worked! Fewer tantrums, more social interaction and interest in other children, more foods, less scripting, more compliance. Things weren’t perfect, but they were better. He did so well, in fact, that he was discharged from OT, feeding therapy and TSS in the course of one year. At Joey’s second evaluation, the Dr. told me that if things kept going the way they were, Joey would be stripped of the diagnosis within the next year.
When the transition to Kindergarten came around, I wrestled with the idea of disclosing the diagnosis to the school district. After all, the Dr. said that Joey might not even HAVE a diagnosis by January, so after a lot of back and forth, I decided not to tell anyone. I didn’t want him branded with the scarlet “A”, especially because I was so sure that he wouldn’t really have any problems in Kindergarten, and then he would just be labeled for no reason.
It took just two short weeks for the teacher to contact me. Her email was kind, but just like the preschool teachers, her descriptions of Joey’s behaviors seemed to come right off of an “Autism for Dummies” jacket cover. At that moment, it all came crashing down. I realized that this wasn’t just me being clever and “bilking the system”. It wasn’t me being overly aware of “autistic like” behaviors because of my job. This is a little boy with Aspergers Syndrome who needs help in order to do some things that other little boys do naturally.
I immediately wrote her back and admitted that I had grossly miscalculated Joey’s ability to thrive in a mainstream classroom without any interventions. I had deluded myself into believing that although he was special and different, he was capable of doing it on his own. After all, this kid is a FUCKING GENIUS. How on earth could he not handle Kindergarten? We will now be holding a meeting with the school psychologist to determine if he requires Special Education services to help him pay attention in class, follow directions, and behave appropriately. In this meeting I will, no doubt, have to apologize profusely again for keeping valuable information from the people who needed it most because…I was in denial? I was afraid that the label would negatively impact him? I’m just another asshole parent who has no idea what I’m doing? Yeah, that last one seems on point.
You know who I really should be apologizing to? Joey. Because by denying what was right in front of my face for the last two years, I made the truth about him somewhat shameful in my mind. And let me tell you, folks, that this child is absolutely the most perfect and the most complete human being I have ever met.
He is my heart beating outside of my chest, and when I look into his eyes I realize that I have known him all of my life, even before he was born, because he is the best parts of me with even better parts mixed in. This diagnosis doesn’t define him, but it also is something that none of us can run from, because it will affect him for the rest of his life. It’s a big part of what makes him…him. Reading words by age two and books by age three, having a memory that astounds everyone every day, loving the solar system so much that he won a space trivia contest at age four, being extraordinarily picky about food, clothing, routines, and transitions, having meltdowns almost daily about any old thing, being incredibly un-athletic but incredibly empathetic. Looking back at this list, you would think that I was some kind of moron for not knowing immediately, but we do strange things when we think we are protecting our children (and ourselves).
So, today I learned something that I should have known all along. It took three teachers, one psychologist, half a dozen therapists and a bucket full of tears for me to learn that my son isn’t perfect, but he is perfectly HIM.
The moral of this story (if there is one) is that this shit is scary, and it’s real, and it’s not going away. But denying it isn’t going to help.
The only thing that does help is the incredible love of our little family and the absolute certainty I have that this little boy is special, and is destined for great things, even if his Mama fucks up now and again along the way. From now on, I will fly that Aspie flag proudly but it will not define him, because he is un-definable. He is a completely, utterly, hopelessly unique person and I am awe struck with gratitude that I get to be his Mom.
Related post: 7 Perks of Having an Autistic Kid