5 Most Important Lessons from a Mother of a Special Needs Child
The blessings and struggles of raising a son who is on the autism spectrum.
Stop me if you’ve heard this one before.
A clueless first-time mom has a lifelong habit of denial, so her two-year-old can’t possibly have a problem. Then, okay, he has a problem, but it will fix itself (like everyone tells her). Then she and her husband get him diagnosed and it’s something called PDD, which means Pervasive Developmental Disorder; at least it’s not autism that seems to be sweeping the nation.
Only, of course, it is.
Fast-forward and my son (call him Cory) is a teenager. Not a regular teen, but my beloved son, anyway. His speech is a little stilted, and he gets annoyed if he sees someone smoking on the street (because it could kill you, so why would you do it?). Life’s not what it was supposed to be, but maybe it was supposed to be much more challenging, and what I’m paddling through is a sea of blessing. Who knows?
I’m in a contemplative mood. Rosh Hashanah is coming. For the last few years, I’ve made a note to myself before the holiday of what I should request when praying for a good year. The other day I checked out last year’s list and realized how much progress Cory has made. Not a moment too soon, either. I’d been feeling low...some new medicine Cory is on that’s not the hoped-for cure-all. It helps to remember that the last 12 months were, indeed, productive.
Noticing the good stuff: That’s just one thing I’ve learned as the mom of a special-needs child. So in the spirit of the season of renewal, here are five key lessons from me to you:
1. Face what’s wrong head-on. With apologies to the Rolling Stones, time is not on your side. Not if your child has a problem you need to address. When Cory was born, he seemed normal. About a year later, he began to withdraw and not make eye contact. My husband and I were freaked out. We finally faced the facts, months later than we should have, and found a specialist to evaluate and diagnose Cory. Having your fears confirmed is terrifying. But sooner or later, you remind yourself that a diagnosis is just a label, not a sentence. And, with God’s help, not unchangeable. When you know what to call a problem, you start asking questions that lead to answers.
There have been plenty of missteps along the way. Early on, Cory was in a mainstream nursery school. We were looking for a special-needs setting but still clinging to a secret hope that his issues would fix themselves. That episode was a disaster. But it showed me Cory needed a school that was right for him, not one that fit some preconceived idea I had about where a child of mine should be. An ego-puncture can be a gift.
2. Get out there. This part is about showing up. The world is full of people and ideas that can help you; meet it halfway. Don’t isolate yourself. Go to lectures about what your kid has. Network with parents in his school. After Cory’s diagnosis, I learned of a group at the local JCC for parents of special-needs kids. The first time I went there I was so sad, full of shame about my son’s condition. And then I met these parents who had gone through, more or less, what I was going through. It was so heartening to learn I was no pioneer, that there were others who had been where I was and could help me find my footing. Over the years I also found out about email groups of parents of special-needs kids. Night or day, I can ask any question or voice any fear, never having to sugarcoat my words, and there’s always a parent to listen, or share what she knows.
3. Feel as awful as you need to feel...up to a point. So you're not a pioneer. Still, you are unique, and your child’s issues are unique to her. You don’t have to adopt someone else’s brand of optimism. Early on, family members would assure me that things would be okay. Sometimes that’s exactly what I needed to hear. Other times, I wanted to dig a hole and descend to the bowels of the earth and disappear. I eventually turned to therapy, and my doctor also prescribed a little pharmaceutical help. I still get sad, at times, but it’s manageable. I’m better at figuring out what will make me feel better, whether it’s prayer, or a movie with a good friend, or reaching out to an online parents’ group, or rocky-road ice cream.
4. Risk “no.” If you need something for your child, keep trying to get it. When planning for Cory to start kindergarten, I took him for an interview at School A. They turned him down, feeling he was not ready for their program. My husband and I were disappointed but chose School B. Before the school year started, Cory went to the summer program at School B. Soon we realized it was the wrong place for him. Mid-August, I told Shannon, Cory’s speech therapist, how concerned I was. She suggested I call School A again. “What’s the worst that could happen?” she said. “So they’ll turn you down a second time. Cory has come so far since the winter. Try it.” I called the admissions person at School A. To my shock, he told us to come in. Cory was accepted, and spent the next five years there.
5. Where we started: Let the positive catch your eye. It’s easier to acknowledge the bad than accept the good. When your child struggles to do what should come naturally, you can find yourself so focused on helping him overcome his deficits that you overlook his strengths. But don’t. Notice what your child can do that she couldn’t do a few years ago. Notice what he can do that “normal” kids can’t. Stepping back and taking perspective reminds you there’s something to celebrate.
Like Rosh Hashanah.