My autism success story?
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Author’s Note: For the purpose of protecting my 5-year-old autistic son’s privacy, I’ll call him “Brooks.”
Brooks is an autism success story. Or he is well on his way to becoming one. But like everything else about this puzzling neurological condition, any definition of “success” is complicated.
Yes, there are specific challenges that Brooks has overcome one hundred percent. They are now set in stone; that is, we are confident they will not reverse themselves, and our family owns them proudly. There are big ones and small ones, and we are fortunate enough to have a long list.
I’ll start with the huge arena of speech and language. When we took him out in the stroller, Brooks used to point and make broad inarticulate vocalizations that made it impossible to respond to his rare attempts at a social interaction. This was heart-breaking, especially since by then, all his typically-developing peers were having full-on conversations with their parents, and all my husband and I could do was watch longingly. These days, we constantly have to remind Brooks to use his “indoor voice” on the A train when he casually chatters on and on: “What stop is next, Mommy? The A train is an express train, but I think the C train is a local…” He often charms even hardened NYC subway riders and I get compliments on my well-behaved and happy little boy. I smile and say thank you.
Then there are smaller things like haircuts. Brooks used to completely melt down even before anyone ever touched his hair; simply walking into the waiting room of the salon was enough to set him off. These days, he loves going: He sits in the cool chair that goes up and down, he enthusiastically (and politely) asks if it’s time for the blow dryer, and the other stylists often compliment me on such a well-behaved and happy little boy. I smile and say thank you.
And these jaw-dropping transformations keep coming. Just this past weekend, our family attended the circus. A few short years ago, even way up in the nosebleed seats, Brooks was so overwhelmed that he cried and screamed until we finally had to leave. But this past Saturday, he laughed at Grandma the Clown and said “Wow!” during the high-wire act. More compliments. More smiles.
But these smiles of mine are complicated. While they mostly express my inescapable joy that Brooks is deserving of compliments even by strangers unaware of his diagnosis, they also have a knowing, melancholy aspect because even though he looks “normal,” his brain works differently. Not necessarily better or worse, but differently, and that is something that strangers will never know or understand. In fact, even well-meaning family and friends who do know, don’t really understand. And how could we expect them to, when the truth is that my husband and I don’t fully understand?
For all of Brooks’s miraculous developments, he is still not a child who can attend a mainstream school, or even a regular integrated classroom—we had to move 160 blocks uptown to get him into a program that provides the wide range of specific one-on-one services he needs. And when he chatters on and on, his language is often repetitive and slightly obsessive. And when he gets a haircut, I have to prompt him to say hello and goodbye. And during the circus, he watches many of the acts with an odd curiosity instead of laughter or delight. Maybe because he can’t read certain social cues. Or maybe because it’s too loud. Or maybe because of the smells. Or maybe because he needs more sensory input. Or maybe because he needs less sensory input. We still sometimes can’t figure it out, and we’ve been at this since he was 18-months-old!
Does this mean Brooks is not an autism success story? It all depends when you ask me that question. Is it at the end of a long day when I’m frustrated that Brooks can’t change into pajamas by himself because his brain can’t sequence the number of steps necessary to get through it all? Or is it right after his teacher tells me that all by himself, for the first time ever, Brooks approached a classmate and said: “Do you wanna play with me?” and sat and played with the boy for a full 15 minutes?
Tomorrow is Thanksgiving. I’m thinking that perhaps my husband and I will take the day off from being ever vigilant of our son’s deficits, and instead simply be thankful for his remarkable progress since last Thanksgiving. And, just as importantly, we will look forward to the extraordinary changes that we know next Thanksgiving will bring. Happy Turkey Day, everyone!
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Marni, as usual you hit the nail on the head–you could substitute the name of my 5-year-old and everything you say would apply to him and me (except the circus, which we haven’t made it to yet :))
Happy Thanksgiving!
Comment by Anne — November 26, 2008 @ 9:51 am
Great post! I’m thankful my son has come so far as well. And thanks to you, Marni, for the reminder!
Comment by Janice — November 26, 2008 @ 10:26 am
Marni,
You are making a tremendous difference in the lives of others with your sharing and blogging.
Blog away!
Another one of your fans…..
Comment by Denise — November 26, 2008 @ 10:56 am
Yes, you have a lot to be thankful for! Happy Thanksgiving!
Comment by Nancy — November 26, 2008 @ 10:57 am
Thank you for sharing your son’s accomplishments. I share all the same feelings.
Have a wonderful Thanksgiving!
I really enjoy reading your blogs….
Sharmyn
Comment by Sharmyn — November 26, 2008 @ 11:19 am
Brooks is an amazing kid. I love spenting time with. He shows great strength in things he wants to challenge.He is cute loving and fun to hang with. He could be so much fun that you sometimes want to asked yourself if he really has mild autiusm.
Comment by patricia. st.aimee — November 26, 2008 @ 11:15 pm
I smiled reading your blog, but there were tears streaming down my face, tears of joy because I am so proud of this beautiful boy & his beautiful parents, & I give thanks for you all.
Comment by Shirley (Baba) — November 27, 2008 @ 8:06 am
Parents of children with autism and other developmental disabilities quickly learn the true meaning of success — one very different from society. The definition of “hero” changes as well, none of whom are honored by ticker tape parades or keys to the city, but who have earned our respect and deep appreciation. They are our children and the many professionals and volunteers who work with them and guide us in our daily challenges and successes. Yes, much to be thankful for.
Comment by jmb — November 28, 2008 @ 10:51 am
I am fortunate to be an aunt to the most remarkable nephews and nieces, which include my New York nephew Brooks. While we are far apart geographically, our close relationship is preserved through Marni’s weekly phone calls to my mother. She has this extraordinary ability to share with me and my sisters, not only the gist of the conversation but also what isn’t said – the enthusiasm, passion, humour, hope, laughs and tears that are part of life with Brooks. I do believe my incredibly cute nephew is an autism success story – one that grows and changes with each new success.
Comment by Robbi — December 4, 2008 @ 3:10 am
Marni, your blogs are inspirational, and like many others, I could close my eyes and have someone read the exact words substituting my daughter’s name for your son’s and it would all be true… except for this haunting line…
“Yes, there are specific challenges that Brooks has overcome one hundred percent. They are now set in stone; that is, we are confident they will not reverse themselves, and our family owns them proudly. There are big ones and small ones, and we are fortunate enough to have a long list.”
We must never take for granted the children’s successes because we and many others work so very hard each and every day toward maintaining the children’s progress. We are the fortunate who have gotten placement in the appropriate educational settings where the right therapy is received almost continuously. Unlike your story, my daughter’s story, contained REGRESSIONS, heartbreaking, unbelievably real, and completely unneccessary. Due to her tremendous progress over the years, she was originally placed in a crowded CTT classroom of a local school where unrealistic demands were placed upon her young overloaded system to the point of decompensation. Her autistic symptoms returned with a vengance.
I fought the long, hard, good fight to have her case reviewed and we were so very fortunate to obtain her new school and classroom after one whole year. It has proven nothing short of a miracle. We have our wonderful little girl back, and now her possibilities seem endless.
Comment by Karen — December 22, 2008 @ 8:21 am