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Wednesday, March 2, 2011

Will I always be this way?

I have been listening to and reading the online responses to last night’s episode of Parenthood which caused the special needs communities to be all a twitter today.  Whether or not it was a perfect representation of what it’s like for a child to learn he has Asperger’s I leave to others to decide – but it spoke to me.  I saw felt our journey in their story. And I was flooded with memories of our own discussions about this journey.

Despite the comments from pediatricians and well-meaning family and friends about boys having more energy, boys being boys, and how developmentally it was too early to diagnose, I knew at age 3 that my little man had ADHD. I KNEW. But part of me wanted to believe the outside voices, the part that was uncertain of what that meant for us and the part that was fearful of the ‘ADHD is not real, it’s just poor parenting’ judgments. It made me want to live in denial but my inside voice told me I was right. Moms just know.

And little N knew. He did not know it had a name but he knew he was different. It was drilled into him daily by caregivers and teachers, and yes, by me. He knew because the pre-school teacher inappropriately physically restrained him to control his movement and impulses. And he knew because his friends in first grade teased him because he could not draw or write but was only capable of ‘scibble-scrabble.’  He knew because the constant barrage of sarcasm and negative feedback in second grade sent him under a table to hide from what he was feeling inside.  And he knew because his friends in third grade called him a trouble-maker and one of his teachers humiliated him weekly in front of those friends. He KNEW. 

I find that I can easily discuss almost anything with my little man; I have no problems giving him intimate details about his adoption or even talking about sex education.  But for some reason, I was totally shying away from talking to him about his ADHD.  Throughout his time in school, he day by day began to notice how different he was from his classmates and looked so defeated when he was teased because of something he could not control.  While I had been fighting the daily battles with school to ensure his needs were accommodated in the classroom, I had not done enough to keep the different-ness from chipping away at his self-esteem.  It was time for the talk.  He was seven years old when I finally took this next step in our journey.  We read Eukee, the Jumpy, Jumpy Elephant together one Saturday night and it was like a light bulb for both of us. His eyes got really big and he said ‘We have something in common, Eukee and me!  It is hard for ME to sit still and I feel jumpy inside.”  Albeit through tears, I was finally able to openly talk to him about what it feels like to BE little N. He could not wait to take the book to school and show his teacher. It was a big milestone – for us both.

Fast forward a year or so when I realize that he needs more to hold onto, he needs more of this journey explained, this time a little deeper. So we talk and we read and we meet new doctors. But it’s hard and it does not change the reality of his journey.  We read All Dogs Have ADHD and I focus on the page that calls out the great people of the past who have shared this journey – Henry Ford, Alexander Graham-Bell, and Leonardo da Vinci. I want him to see his greatness too. “Aren’t all those people dead?” Um, ok, how about Robin Williams, Ty Pennington and Michael Phelps. “OK, that’s better.”

Fast forward again to a couple of months ago, the now ten-year-old boy is still grappling with who he is. After months of new teachers in a new school making him feel like a complete failure because of his differences, he tells me he wishes he could open his head and take out his brain. I grieve with him. When Max from Parenthood asks the question ‘will I always be this way’, I feel the sob catch in my throat. Because I don’t hear Max – I hear my guy, in a fit of rage, scream out ‘why does MY brain have to be different?!’ I feel his pain and I experience the judgments and lack of understanding he faces every single day. How many times will he have to endure being accused by adults and peers that he purposefully makes bad choices for things that are out of his control? When will the rest of the world learn that different does not equal bad? All I can do is hold him tight and make him believe that I believe in him.

And we keep talking. Because with this label comes many strengths that make him who he is – and he is awesome. The inattention is sometimes really attention to everything and he sees and feels things that many around him never even notice. His difficulty writing has led him to become a whiz on the computer. He can create a PowerPoint presentation faster and with more bells and whistles than many of my peers. His impulsivity brings with it a fearlessness that allows him to scale rock climbing walls with ease and grace and sing a cappella in front of crowds of people. His brain working at a speed that most of us wish we could master gives him a creativity that leaves me in awe on a regular basis. And being different has helped him become compassionate. It is not his different-ness I feel, but his heart when he asks for updates on the homeless man who spends his time in front of my office building ("what did he do today when it rained, is he ok?") or when the summer camp counselor tells me that little N is the only child who consistently each day spends time playing with the little boy who cannot walk and relies on a wheel chair while all the other children shy away from him in fear.

Yes, little N, you will most likely always be this way – but can’t you see, as I do, that is a good thing?!