Parenting, Special Education

On the Importance of Joy for Children with Special Needs

We worry so much about whether our children are where they are “supposed” to be. Are they performing at the right grade level, fitting in, playing soccer like all children seem obligated to these days? Life with a special needs kid can be so exhausting, it’s hard to see past getting through the next day or coming up with the next possible solution at school. But it’s crucial, from time to time, to take a step back and ask the big questions.

Does my child have joy? Does he have connection? Is she experiencing success somewhere?

In this last post in my series on emotional resilience, I’d like to talk about joy. Often, school is just not where our kids are going to find joy, or connection or success either. My son CJ certainly didn’t. I know how essential these considerations are because I was so freaked out about school, I lost sight of them entirely at first. The results were dismal. By third grade, CJ was so burned out by the endless uphill battle that was school that the spark seemed to have left his eyes entirely. He would sit, slumped in defeat and exhaustion, in the car on the way home. It made my heart hurt to watch him. In a scenario I know many of you will relate to, he had very few friends and no energy for outside activities. He hated school. Actually, I don’t think he would have said he hated it. He was so shut down, I doubt he experienced any clear emotions at all. I find it telling – and heartbreaking – that at his current age of 24, he remembers much of his early youth as miserable but has very few clear memories of actual events, schools, or other details. It’s all kind of a haze for him.

I finally dragged myself out of my panic and despair and started thinking outside the box.

We found a different school after third grade, one that provided individuated instruction. They knew how to support kids with issues like CJ’s, and this helped enormously. But after two years there we felt that, while he was no longer actively traumatized by school, he was no more engaged with life than he had been and still seemed isolated and worryingly shut down. I realized I’d been focused on what I now consider the wrong end of the scale. We found more extensive therapies and made the daunting decision to homeschool him, but it took a while before I had the heart to make him actually do anything truly “school-like.” One book on homeschooling proved a godsend, offering this gem (paraphrased because I now have no idea what book it was):

“Children who have struggled deeply with school may need some time to recover, just as anyone would who has been through a prolonged, trying time. They need to rediscover the joy in life.”

And there it was. Joy. The thing that had once been the defining feature of CJ’s personality, and that, by the time he was 10, we saw only on rare occasions. There is no place for “joy” on standardized tests, on report cards, on college application forms. It’s easy to forget about it as a barometer for how your life is going. But really, without it, what propels your life? What the heck are you getting up in the morning for? CJ had certainly run out of reasons. “Because it’s just what you have to do” is simply not a sustainable motivator when life is that hard.

I want to be clear: by joy, I do not mean just “having fun.”

It goes so much deeper than that. As we found our way, we had no “joy curriculum.” But we looked for things that lit him up. We let him learn about things that delighted him, no matter how goofy or obscure, trusting that if he could rediscover his innate fascination with life, he would find that learning was a wonderful way to engage with the world around him. And it worked. We did, of course, find our way back to more academic skills and self-discipline. But we had to rebuild the foundation so that learning not only felt like something he could do, but something that had meaning for him. After two years of homeschooling, he went back to school. Five years later, he went to college, becoming passionate enough about a particular specialty to fight for his own independent major. He sometimes struggles with the logistics of “adulting,” as he calls it, but looks for a life that has meaning and joy.

And that, to me, is the ultimate mark of success.

  For more from Marijke Jones, read Child Decoded: Unlocking Complex Issues in Your Child's Learning, Behavior or Attention, co-authored with Kim Gangwish and Robin E. McEvoy, PhD.