Last night, over a beautiful plate of pasta, fresh fruits and vegetables and a slice of French bread, Ewan turned to me and said, “Mom, I just want to go to school where there’s only autistic people. It would be a good fit for me and I could make friends. Normal people just don’t understand me or my autism. Please mom, just let me find an autistic only school.”
For a second, I was completely stunned. I didn’t even know what to say or how to say it.
For so long, I have labored under the belief that in order for my son to succeed in life and to live an independent life, he needed to be mainstreamed in a fully inclusive classroom, surrounded by a wide variety of other minds. For the last nine years, I believed Ewan needed practice living with the entire human spectrum.
For the last nine years, I think I may have been completely wrong.
I wanted my son to push the limits of just about everything. As a nonverbal child earlier in his life, we handed him a communication device and he learned to communicate. Over the years he learned to communicate with his own lips. As a school aged child, we put him in a mainstream classroom and watched him do better than many of his peers in some subjects. I wanted him to defy every stereotype ever put on children like him. I wanted him to have every tool at his disposal to live the life of his choosing. And now, having been given those tools and finding his own voice over the years, he is now begging me to listen.
Over that beautiful plate of pasta and fruits and vegetables, he turned to me and with great passion and emphasis, told me how much happier he could be if he were surrounded by only people with autism. And in my stunned silence, I had to process the fact that I had been so wrong for so long.
Tearfully, I replied, “But Ewan I always thought it would be better to live with all kinds of minds, you need to be around people who don’t have autism. When you go out to work, you will work with other people who don’t have autism. There is no autism only adult community, town or state. You have to learn to live with everyone and with all the ways that they think.”
He put his fork down and said, “No, mom, my life would be better if I could just be with people who understand. Others don’t live my life. My wife will be autistic and I’ll just work with other people with autism and then there’s you and dad, you guys understand me. See I CAN be happy.”
More tears from me followed, as I said, “Ok, ok Ewan.” I reached down and held his head between my hands and kissed each cheek and said, “Ok. If this is what you want, we’ll help you get there.”
Ewan looked up at me slightly confused, and asked, “Mom, why are you crying?”
I sniffed and said, “It’s just hard for me Ewan, I can’t explain it very well.”
He patted my hand, and said, “I understand.”
I smiled, this is a new phrase Ewan has picked up from somewhere and he says it constantly. I said, “Ewan, you don’t understand why I’m crying. I don’t even understand why I’m crying.”
He scrunched up his forehead, and replied, “Well, what do I say then when someone cries and I don’t know why?”
I kissed his forehead then, and said, “Tell them it’ll be ok. Tell me it’ll be ok.”
He put his forehead next to mine then, and whispered, “It’ll be ok mom.”
For so long, I have waited and wished for my son to express himself so passionately and eloquently. At nine years of age, over a beautiful plate of pasta and fruits and vegetables, he told me what was in his heart. And after nine years of being this child’s advocate and pushing to give him every possibility, he has taken over and is advocating for himself. And I have to believe that he knows himself better than I. I have to stop and think and accept that his vision of life is his own, and that whatever he chooses, and however he chooses to do it, is what I must learn to appreciate and respect. Because he knows himself better than I.
For nine years, I have been swimming up the mainstream, fighting and pushing barriers, looking to make inclusion our life. And for nine years, it appears that I have been swimming in the wrong river. Inclusion is a wonderful, beautiful thing and can be such an amazing experience for everyone involved. Yet it is not what my son wants. He wants the thing that I always thought was too restrictive, too isolating. He wants to be surrounded by people who are just like him and think like him and understand him better than I.
He wants a Gallaudet. He wants what many in the Deaf community have created, an island of the Deaf.
For many years, I have thought about the struggle of the autistic community within the wider range of advocacy and have compared it to the struggles of the Deaf community. For many years, I have wondered if it is autism with a little ‘a’ or Autism with a capital ‘A’ and what I truly believe about the autism life. I think I finally have my answer, directly from the one person I cannot ignore. Ewan wants to be a part of an Autistic community and he wants an Autistic culture the same as those in the Deaf community and Deaf culture. He wants a cultural identity and in this moment, I must stop swimming up the mainstream and respect the thoughts and beliefs and words that I have fought so long to hear.
Every minute of nine years of speech therapy and sensory activities and feeding therapy led to up to our moment of epiphany over a beautiful plate of pasta and fruits and vegetables. Over dinner, like any other family, my son looked at me over a plate of food, and told me what was in his heart and in his mind. And now I must listen. Many years ago, Ewan found his voice with his Dynavox and slowly learned to use his own natural voice. But it wasn’t until last night that he really and truly used his voice in the way God intended. Last night, he told me everything he really and truly believed about life and advocated for himself.
And now I must listen. Because I have to believe he knows himself better than I.