Is it terrible etiquette to begin this whole thing with a caveat? I’m offering advice to those of you about to send your kids to school for the first time next fall, the kind of foresight I’d wished I’d had before sending my son, who has cerebral palsy, is in a wheelchair, and is mostly nonverbal. But I know none of our kids are the same. No diagnosis or personality or sensitivity is like another. It’s part of what makes our kids special in all the good ways too—they are 100% themselves. And much like our kids, none of us parent the same, so none of us can prepare for school the same way. We come at it with a boatload of history and a family dynamic uniquely our own. That being said…I’m going to tell you what has worked for me and my son, Charlie. Hopefully it will help ease the passage into that brave new world of school.
At age six, Charlie started public kindergarten. We had considered private schooling at the special needs preschool he had attended for the past three years. However, they only offered kindergarten and we really did not want him to have to navigate the new routine of public school in first grade with kids who were veterans by then. It has been better than I’d hoped. Here’s my takeaway.
1. Don’t be afraid of the bus
Because Charlie is in a wheelchair and he gets therapies at various locations around town, I was used to hauling both him and his chair everywhere. I assumed I would continue this in kindergarten. However, his SPED teacher, in one of our very first meetings last spring said something that stuck: “Don’t be afraid of bus. For a lot of kids that’s their favorite time of day.”
But he’s my baby, was all I thought as I filled out the forms and spoke to the bus driver to confirm pickup time and tied the little bus tag to his school bag. However, on that very first day, when I was a loosely gathered bundle of nerves, I watched Charlie’s face crack open with joy as the bus approached. It was as if Santa’s sleigh and the Hogwarts train both pulled in to our driveway to whisk him away. Our SPED teacher was right. He loves that bus. They play music and string twinkly lights during the holidays and he has the driver and his aide wrapped around his little finger. It’s the six-year-old version of a party bus.
2. You don’t have to love everyone on your child’s team
When we met in the spring to begin the process of school enrollment, I met the principal, a kindergarten teacher, a SPED teacher, an occupational therapist, a physical therapist, and a speech therapist. I did not know who his actual kindergarten teacher would be or any of his aides. We went into the year with some gaps that would only be filled at the eleventh hour. And here’s the honest truth: I love his SPED teacher. She is magic incarnate. Also, his physical therapist knows how to make gym class fun and accessible for him. And one of his aides, whom we occasionally run into in the grocery store as I’m desperately trying to remember what was on the grocery list that I left on the counter, is like a favorite aunt—fun and completely on my wavelength.
But I don’t love everyone. There are people in his school day that don’t quite get him, or don’t make time to understand him, or ignore him, or treat him as a baby rather than push him as he needs to be pushed. Could I let this drive me crazy? Of course. I am excellent at that. But what good would it do? Part of life is interacting with people you might not love. This, too, is a skill he needs to learn. And the majority of his school day is filled with people who do get him. That’s all I can ask for.
3. Ask all your questions
When we had those preliminary meetings and early assessments before the year began, everyone asked me, “So, do you have any questions?” And I would open and close my mouth like a fish out of water. Because of course I had questions, but they were big and vague and mostly filled with a murky-colored fear rather than anything practical. However, once school started, the questions began to crystalize. Like, how was his day? Did he eat most of his lunch? How is he progressing at interacting with his peers? Did he wheel himself in his chair on the playground? How does he use his speaking device, say, in math or reading or science?
But there was no longer anyone around prodding me to ask these questions. And so, except for occasional emails and texts between his SPED teacher and his therapists and myself, I wasn’t getting my questions answered. Until a mom friend of mine, whose son is one year head of Charlie and gets hippotherapy with him, passed on to me the sheet she made and sent to school each day to find out how her son was doing. It had categories for eating and behavior and social skills—all those things I was wondering right there in black and white. And so, bolstered by her courage and with the help of his SPED teacher, we created a “Charlie sheet.” It comes home each afternoon and is exactly what I needed to understand his day. I wish it hadn’t taken me three months to ask.
4. Find parent support
It took that mom friend to encourage me to advocate for more feedback. And she gave me the tool to do it in a practical manner. That sheet provided a concrete solution, so I did not have to resort to abstract complaints. Another mom, whom I met through Charlie’s preschool, told me about a summer camp for kids with special needs run by our county’s Parks and Recreation department. She sent me the website. Told me to sign up fast. Said it was the best thing for her daughter to keep her active and social in the summer. These women helped me so that I could help Charlie.
Parents who have been there before you are the ultimate resource. You don’t have to weather every storm anew. You can rely on their wisdom to help make your transition easier.
There is much more, of course, that I could share about this giant transition to school, but I hope this offered a tiny bit of insight to get you started on the right foot. When in doubt, trust your instincts. When in doubt, ask. When in doubt, be braver than you feel. And trust your kid. In my experience, they are often much more adaptable than we give them credit for.
Jamie Sumner is a special needs mom, author and blogger.
Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.
Read her blog, The Mom Gene.
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You can find more information about children with disabilities and school below:
- IEP (Individual Education Plan) Day: How to Prepare Video
- Why I’m Glad I Chose to Homeschool My Child with Special Needs
- Back to School for Your Child with Special Needs: How to Be Ready
- Tube Feeding at School: 8 Tips to Prepare Your Child and School Staff
- School-Based Accommodations for Children with Dyslexia