special.

“Special”: it’s quite the double-edged sword of a word. Everyone wants to be special, but not that kind of special. Special like my son. Earlier this year, my son was diagnosed with mild to moderate ASD (Autism Spectrum Disorder), and ADHD (Attention-Deficit/ Hyperactivity Disorder), with suspected ODD (Oppositional Defiant Disorder) and SPD (Sensory Processing Disorder). With everything we’ve gone through in the past year, I was not prepared to hear this. We knew he was having trouble participating in school, but we figured, it was just him being a normal 3 year old boy. When we were advised to get him evaluated, I assumed that he’d be diagnosed with ADHD and maybe SPD, but I was not expecting autism. Not even a little. I remember the day he was diagnosed, and feeling like the wind had been knocked out of me. Like all my hopes and dreams for him were destroyed in one fell swoop.

Ever since Matis was born, I always felt like he required more attention than any of the other babies or toddlers I’d been around. But he is my first (and currently only) child, so I didn’t really have much to compare him to. Everything he did was my “normal”, and so I just tried to roll with the punches. But I think I knew, maybe subconsciously, that something was up.

Throughout the years, I went through different phases of motherhood. It mostly fluctuated between not feeling cut out for such a 24/7 version of being a mom, and feeling like “OK, I might not be perfect, but I got this.” And just when I felt like Matis and I were getting to a really good place, and I was just about in my “I got this” phase, he was diagnosed.

Now, I can’t say what my reaction would have been if I wasn’t already stressed out when I had heard the news, (I would hope better). But my first reaction was denial. And because of that first reaction, I truly understand everyone else’s reaction when they heard. No one quite believed it. He just seemed like a really rambunctious, energetic child to them. Everyone questioned the qualifications of the Dr. who diagnosed him. And rightfully so. I’m all for a second opinion. But after other specialists were called in to observe him, his condition was confirmed. A small part of me still believes it’s a mistake, but at this point, that small part of me doesn’t matter. We’re going to give him the best chance at life we can, with the condition we believe him to have.

Now, when people say he doesn’t seem like he has autism, half of me is relieved; but the other half is worried. Obviously, the relieved part makes me feel like he could potentially live a “normal life” (school, friends, marriage, kids, etc). The worried part is because I know that since he doesn’t “seem” autistic (or what anyone believes an autistic child to look and behave like), the people around him hold him up to much higher standards than he might be capable of reaching. And they will interact with him in ways that aren’t conducive to his condition, and might even be hurting him as well.

I’ve done a bit of research, and I’ve heard of some people “outgrowing” their autism. I don’t really know what that means, or if it’s even possible, but what I do know is this. I want for my son, what every parent wants for their child. I want him to be healthy, happy, and a good, upstanding part of society. In a way, this has allowed me to get really concise about what my expectations and dreams are for him. A lot of parents want their kids to be a certain way, or go to a certain school, or have certain friends. All those expectations went out the window a long time ago. Now, I really just want him to be a good person, and happy, in whatever healthy context that means for him.

He’s such a fun-loving, sensitive, and quirky kid and now I get to see now how autism adds to his personality and his life. All of the services offered to him are services that could benefit any child, and now I feel like he has an upper hand on life in a way. Because he’s able to work on things early on, that I, as a “neurotypical child”, would have loved to have worked on or been afforded in my early years (like social skills, and extra help and time in school).

I’m so happy to say that about half a year after his diagnosis, I think I have finally processed and taken the time to understand my son in this new light. And boy, have I learned a lot (and have loads more to learn). Matis and I are in such a good place now, thank G-d. I could not be more grateful to the administration at his school for spotting it early, and for the opportunity to do something about it and work with his condition. It’s definitely going to be an interesting road ahead, but I have already met so many amazing people and witnessed so many incredible organizations and programs that are really there to support the special needs child and family.

It’s such a pleasure to watch Matis grow up and develop, and though my expectations for him have changed, I still hold him to quite a high standard; because I know what he’s capable of, and it far exceeds any of my wildest dreams. Wishing you all the patience to process and accept the lemons life throws at you, and the resilience to turn them into the best darned lemonade there ever was.

Xoxo,

Nehama

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