Preparing My Son with Special Needs to Be His Own Advocate
My son, Charlie, is turning six soon and we can’t put it off any longer. Kindergarten is coming. Sometimes it feels like a thing looming, and other times it feels like the first page to a book that you know will be a favorite.
Kindergarten feels a great deal like a board game we are about to step on in which there is an entirely new set of rules.
We have a park near our house that has become a favorite for its handicap swing and smooth path that isn’t too jarring to his wheelchair. A few weeks ago, I noticed that this path has a name, the LifeTrail. It brings to mind Pilgrim’s Progress with its bogs and pitfalls, or like Chutes and Ladders with the potential to “go back four squares.” Kindergarten feels a great deal like a board game we are about to step on in which there is an entirely new set of rules.
We have been spoiled in a way in his inclusive preschool that is especially designed to meet his needs. He has speech and feeding and physical therapy on site. He has also been there from the beginning. His first day, at age two, was the day his younger brother and sister were born. I had planned on carrying him into his first class with his newly packed Thomas the Train lunchbox, but life had something else in mind. And this is what I remind myself as we approach the IEP testing and the new evaluations with new therapists, that I didn’t get to be in charge of that first day and it all turned out fine.
I have been training to be his advocate his entire life.
I am feeling a shift in purpose. I have been training to be his advocate his entire life. I fight for him and erect the necessary supports to keep him on solid ground. I look ahead for the cracks in the sidewalk and gently steer us into smoother territory. I see the growth spurt and set up the evaluation for new leg braces. I see that he is reading full books even though he can only speak a handful of words and I tell his speech therapist. I am the oracle, the seer, the intermediary who has always communicated with the world for him.
But in kindergarten there will be a bus that will stop at our curb each morning and pick him up and latch his wheelchair into that special space towards the back. And I will not get the chance to have that quick word with his teachers at the beginning or end of the day. He will love the bus, I know that. He loves them now. He points and says “go” each time he spots one out the van window so that we often engage in very slow car chases across town.
His friends too, will all be new after four years of cycling along with the ones who have learned his quirks and fight to push his wheelchair and clap when he tries a new food at lunch. Kids, though, at six are lovely. They are curious and their social filters are not yet built up enough to keep them from asking, “why can’t he walk” or “why is his mouth open like that?” I love these questions. They give me a chance to squat beside his wheelchair and help him tap the keys on his speaking device to explain about the cerebral palsy and the talking that is coming along but not quite there yet. Charlie and I have these conversations together. But next year, he must have them on his own.
Independence takes time. It takes trying and failing and trying again.
However, we have been in training all along. We have been preparing for this shift in advocacy and this is what I am hanging on to as I look ahead down the LifeTrail. No, I will not be at his side, but together we have built that smooth foundation for him to roll towards a new year. He is getting better with the speaking device. The words are linking together in a way that is discernable not just to me anymore, but also to other adults and fellow six-year-olds. No, I will not be able to discuss all the day’s nuances with his teacher or his personal aide as my mother’s heart might want, but this is for the better. This is his time to be his own advocate. This is his time to see what it means to speak for himself. He will be the one navigating the playground and the lunchroom. Independence takes time. It takes trying and failing and trying again. And yes, I am a tiny bit terrified of all that is new next year, but I will be waiting at the bus stop and waving and waiting for him to tell me about his day just like any other mom.
Jamie Sumner is a special needs mom, author and blogger.
Read her blog, The Mom Gene.
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