8 Things I Wish I'd Known When My Son With Special Needs Started School

The school day has hardly started when my phone rang. “You need to come and get your son,” the principal told me. “He ran out of his classroom, and I just had half our teachers looking for him before we found him hiding near the gym.”

I got that call just a few weeks after my son, Peanut, started first grade. But I also had many versions of that call when Peanut was in kindergarten and grade 2. Sometimes it was because he’d left the classroom; other times it was because he was throwing things and disrupting class. And then we got the call saying our son had left the school grounds. While my husband I debated who would cancel the morning’s meetings so we could go and retrieve him, his support worker lost sight of him and we had to call in a police search.

Those phone calls may sound familiar to any parent who has a kid like Peanut. While his 99.99 percent IQ might sound like a blessing, in practice it comes with a whole range of challenges that are not uncommon among gifted kids: anxiety, ADHD, sensory processing disorder, fine motor skill lags and a tic disorder. The day he disappeared, we finally concluded the mainstream school system wasn’t a fit for him.

But we spent three agonizing years coping with call after call, and meltdown after meltdown, before we gave up on public school and switched to homeschooling out of desperation. Here’s what I wish someone had told me during those first agonizing weeks of kindergarten.

1. This is even harder for your kid. When you’re getting emergency calls from school that force you to leave work, and facing daily battles over getting to school in the first place, it can feel like the school struggle is your struggle. But if Peanut is having such a tough time with school that it’s disrupting your work and family life, then he’s probably having an even harder time than you are. Approaching this with empathy  —  rather than as something your kid is doing to you  —  will really help build and preserve the relationship you need if you are going to figure it out together. And I know that is incredibly hard to remember at the moment you’re dragging him screaming into class so that you can make your urgent 9 a.m. client meeting.

2. School isn’t life. One of the things we really struggled with was the sense that we had to make Peanut fit into school  —  instead of vice versa  —  because in the real world, you have to be able to follow the rules. But school requires a lot more rule-following than life does. Adults have opportunities to find the type of work, workplace and social context that works for them; school is mostly one-size-fits-all. Kids who have a hard time in school aren’t necessarily going to have a hard time in life. Making Peanut fit into the standard school system isn’t an indispensable part of turning him into a happy, healthy, successful adult.

3. School is more flexible than you think. Our school initially set the expectation that kids attend full-time or not at all, but once we ran into trouble, they were willing to support a different kind of arrangement. We’ve done half days, we’ve sent Peanut part-time to public school and part-time to enrichment classes, and we’ve done homeschooling with supplementary classes at a private school.

4. Be the squeaky wheel. Peanut will not put up with a situation that doesn’t work for him; if he’s bored or frustrated, he brings the whole classroom to a grinding halt. That makes life difficult for his teachers, classmates and family, but it also ensures he gets his needs met. With our daughter, it wasn’t so obvious. Like a lot of girls, she just quietly daydreamed when school stopped engaging her. In both cases, I spent too long trusting in the school to sort things out. Now I know I need to advocate vociferously for my kids. Be prepared to be pushy, and make sure the teacher and school follow through on any plans you discuss.

5. Trust your gut. So many school counselors, psychiatrists and other experts told us they knew what was “wrong” with Peanut, and how to fix him. We spent a lot of time listening to and working with “experts” whose approach and perspective just didn’t gel. Over time, I’ve learned to trust my gut on who to work with. We’ve worked with two amazing psychologists, a wonderful developmental pediatrician and an incredible public school support worker who took a shine to Peanut in kindergarten and has stayed in touch (entirely beyond the call of duty) for four years. We chose Peanut’s new school in large part because I feel like the principal really gets him. I wish I’d spent less time working with people who never felt right to me and just followed my instinct to find and work with the people who clicked.

6. Find other parents in a similar situation. When my daughter was born, I treasured the circle of new moms I hung out with for much of her first year. And when Peanut was still a toddler, I was thrilled to connect with another group of parents through a moms’ group that a dear friend of mine convened. As we headed into the non-stop crisis of his school years, however, those mommy gatherings felt increasingly foreign, and even painful. It was hard to console a mom whose kid cried at the grocery store when my kid had just battered a hole in his bedroom wall during one of his near-daily meltdowns.  At a certain point I just couldn’t be part of those conversations anymore, so I sought out parents who were having atypical parenting experiences: friends with kids who had learning or behavioral issues, parents I met through homeschool programs and other moms I met on Facebook groups. Once I started focusing on my relationships with moms who had similar challenges, I stopped feeling so alone with our school struggles.

7. Rule nothing out. I would never have expected to homeschool, but it’s turned out to be the only viable option for us at this stage. Homeschooling felt a lot more feasible once I realized I didn’t have to do it on my own: as soon as I posted a tutoring gig on Craigslist, I was shocked by how many fully certified teachers were willing to work with us at home for $18 per hour. My husband never expected to send a kid to private school, but once he recognized the public school system just couldn’t serve Peanut, he was game for reaching out to the private school that now teaches Peanut part-time. If we had realized how many options were actually available, we’d have been much less despairing during Peanut’s initial troubles with school.

8. Nothing stays the same — and nothing will change. It may sound like we had three years of unrelenting hell once Peanut started school, but the truth is more complicated. At various moments we shouted with joy, convinced that our latest setup – the terrific homeschooling teacher, the move to half-days, the change in schools – had solved our problems. But none of our moments of harmony lasted for long. In the past four years we’ve had to reinvent our school, childcare and work arrangements every six months. During this time, we also kept expecting to find the school, teacher, medication, parenting approach or developmental stage that would see Peanut settle into school. But once I stopped expecting the miracle solution, things got so much easier. I re-organized my work and started treating every day as a new day  —  not just to let go of resentments from a bad day, but even more importantly, to be prepared for a rough day even if the previous day or week had gone well.

Best of all, I stopped seeing Peanut as a problem to solve, and actually just got to experience him as my kid  —  my fascinating, exasperating, amusing, loving kid.

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