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Answering questions about your special needs child

You’re out at the park for a bit of fresh air. The sun is shining, there’s a slight breeze in the air, and you’re half expecting to see animated bluebirds in the trees. And then Another Mother and her Typical Kid show up, and you know it’s just a matter of time before one of them asks a question.

Women talking on bench

When the newness of a diagnosis — or the lack of one, coupled with the obvious fact that something is wrong — is upon you, questions asked by strangers, family, and friends can send you into fresh waves of despair. You may find untold reserves of sarcasm, or you may simply discover that each question has the power to devastate you anew.

So how do you answer questions about your child with special needs?

Questions from other kids

Generally, other children are asking from a place of genuine curiosity. In fact, frequently, they’re asking a different question from the one you hear. For example, a little girl — maybe 4 years old — once asked me, “What happened to him?” and I launched into a far-too-explicit discussion of genes and chromosomes, only to have her respond with, “I thought he spilled ice cream,” as she pointed out a stain on his shirt.

These days, I try to answer kids’ questions in the spirit they are asked. So when a 3-year-old child sees my son and asks, “Why is he lying down?” I say, “He’s tired from all that playing. Do you ever feel tired?”

The 6 year old who tries to engage my son in play might ask, “How come he doesn’t answer me?” I’ll explain that my son has a hard time talking sometimes, and I might suggest a way they can play together. And if a 10-year-old demands to know, “Why is he so weird?” I ask, “Do you think that’s a nice thing to say?” My directness usually gives the child pause, which is a good thing. We engage in a little back and forth, and more often than not, the child gains a better understanding of my kid and special needs — and frequently, my son gains another playground advocate.

Questions from other parents

I try to remind myself that I don’t know what’s prompting the other parent’s question. Perhaps this woman has another child at home, a niece, a sibling, someone with special needs. Maybe she is currently researching some amazing new therapy. Maybe she’s just trying to make small talk and she’s kind of appalled at what just fell out of her mouth.

If the question is innocuous enough — How old is he? Where does he go to school? — I’ll answer, and depending on my mood, I might offer more information. If the question is a little more encroaching, such as, “Does he have autism?” I try to find my happy place and give a straightforward answer. “No, he has a different syndrome. It’s very rare.” If the person is nice, someone I’d like to make an effort to get along with, then my answers are usually more forthcoming. If it’s a bad day, or a person I don’t care about, I keep my answers short and to the point, and if the person persists, I sometimes say flat out, “I don’t really want to talk about this with you.”

If a question itself is rude, or if the parent’s tone offends me, I say so. Although I love a snarky comment as much as the next girl, I’ve moved past that phase. Instead I just tell the parent, “I’m not comfortable with that question.” And then I let them sit there, feeling awkward, and I smile sweetly. Okay, so maybe I haven’t totally moved past my snarky phase, but this is progress, trust me.

Questions from family and friends

Ironically, it’s the questions posed by family and friends that often present the most problems. These are people you love — or you’re stuck with — and who ostensibly love you and your child. And yet, whether from ignorance, misplaced concern, too much love, or whatever, they can ask the most awful questions.

Sometime in the last year, I decided that my mental health mattered more to me than making other people feel okay about making stupid comments or asking horrible questions. So when a close relative asked if we were sure we wanted to continue getting speech therapy for our son even if our insurance wouldn’t cover it, I said, “If he were diabetic and needed insulin, we would buy it. If he needed glasses, we would get them. Speech therapy is just like that. It’s not negotiable.” She was surprised, both by the answer and by my firmness, but I made my point.

Honesty is the best policy

I will admit — and this may shock you if you know me or read my blog — that I sometimes let my snark get the better of me. And when that happens, I might feel really great for a minute, but afterwards? Not so much. In those cases, I have found that honesty works wonders. I tell people, “Talking about this sometimes brings out the worst in me.” It’s as close to an apology as I’m going to get, and it conveys my feelings exactly.

So, my fellow moms, I’m curious to hear from you. How do you answer questions about your own fabulous kids? Do share!

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