You’ve always wanted to talk to your child about his disability, but then shied away from doing so, just as the words were forming on your lips. On the one hand, you think your child should know that his issues in the classroom are not the result of laziness or carelessness. On the other hand, you don’t really know how to have this conversation—maybe it would be better to wait.
But wait for what? Are you thinking that one of you will be better able to talk about this at some vague point in the distance, always just out of reach? If so, you need to know this right now: if you don’t have that talk about your child’s disability, your child may come to the wrong conclusion.
Take, for instance, the blind child who thought he’d “grow out of it.” Why shouldn’t he have come to that conclusion if no one talked to him about his blindness? So the boy lived with false hope that someday, he’d be able to do the things his siblings and peers can do. How long would you want your child to live with false hope?
And then there was the child who hated school because it was a place where her peers could do what she couldn’t. She didn’t want the extra help her teacher offered, because she wanted to be like the other kids in the class. And she had no clue she had a disability. She just thought she was a stupid loser.
How long would you want your child to suffer under the illusion that she’s just a loser?
So here’s the thing: if you don’t have that talk, your child may come to the wrong conclusion. Worse yet, if your family is not having this conversation, the siblings of the child with the disability may suffer terrible guilt. They may figure that since no one talks about it, it must be their fault. Maybe they “gave” the disability to their disabled sibling. Or maybe they avoid the sibling because they’re afraid they’ll “catch” the disability.
Does this sound far-fetched to you? Actually, all of the above scenarios are commonplace for children with disabilities and their siblings. Especially since the parents may be too busy with the child with the disability to find the time to sit down and have a talk with the family about the disability.
That’s a pity, because by talking about the elephant in the room—by giving it a name and talking about what it means—parents can often head off a great deal of anxiety for all concerned. Furthermore, in acknowledging the disability and helping children to understand what it means, we are giving them the tools and the self-awareness they need to advocate for themselves.
Does your child with dysgraphia have difficulty writing? She can explain to the teacher that she does best on oral tests.
Does your child with ADHD find it difficult to concentrate unless he sits in the front row where he can see the teacher’s mouth? It’s important for him to be able to voice his needs and to know what can be done to get greater parity in the classroom.
It’s fine that as parents, we advocate for our children. But the job doesn’t end there. We want our children to develop the skills to advocate for themselves, so that as adults, they can be as independent as possible.
For this reason, talking to your child about his disability isn’t something you can just get over with and be done with having to talk about it in the future. The conversation should be ongoing. Experts are constantly learning new pieces of information about disabilities and how to manage them. And there will naturally be all sorts of challenges your child and her siblings will encounter as they make their way through life.
Be compassionate, but don’t pity. Be straightforward but use words your children can understand. Don’t give your child false expectations and don’t let her fall into the trap on using her disability as an excuse to get out of tasks, either.
Do It: Talk To Your Child About His Disability
Now for some tips on how to talk to your child (and his siblings) about his disability:
Emphasize your child’s strengths. Your child with dyslexia, for instance, may not be easily able to translate symbols into sounds, but boy oh boy is he ever a terrific artist. Not to mention a good friend, a kind person, and fun to be with. A disability is a disability. It’s not the sum total of the child. Make sure your child knows this. Be very specific about the challenges that come with the disability while praising your child for his specific gifts, as well. You want him to understand that he doesn’t have to let his disability imprison him. He can move forward in a positive direction, just like everyone else.
Don’t paint the disability as an insurmountable obstacle. Let’s say your child has dyscalculia, which is like dyslexia but with numbers instead of letters and words. Your child may need more time to do math work, and may need extra help, as well. But that doesn’t mean your child should look at math as something to be written off, for good. There are too many things in life that require numbers for your child to simply give up the ghost. Just help your child acknowledge the need for extra time or assistance, and let her know, too, that she’s neither lazy nor stupid.
Help them come out of the disability closet. Kids want to be like their peers. Kids with disabilities may have a fear of being found out. Help them see the good qualities and strengths they have and point out that the disability does not have to inhibit their social abilities.
But then again, parents may also fear people finding out about a child’s disability: a friend of mine had a baby and I happened to run into this mother and her newborn in the supermarket. I asked if I could take a peek at the baby and watched the mother hesitantly lift a corner of the baby blanket so I could see.
What I saw was a baby with Down syndrome. I realized then what the mother must have been going through, how she was still coming to terms with having a child with a disability, what she imagined people thought when they saw her infant for the first time. With time, this mother became a powerful advocate for her child and the child is an integral part of the community. But that doesn’t mean these gains came naturally or easily. And just as it isn’t easy for a parent to acknowledge a child’s disability, it can be every bit as hard on the child to come to a place of acceptance of a disability as a distinctive part of who he is, like having blue eyes, red hair, or a sense of humor.
Know when to stop talking. Kids are great at giving cues, even right from birth. When a newborn is over stimulated from playing, he will start to cry. That’s the parent’s cue to stop cooing and playing with the baby. But older children also give cues. A parent should learn to listen to the child and watch for cues. Answer a question your child asks as simply as possible. Don’t let it turn into a lecture. And when the child seems to shut down, stop talking. Stop talking now.
Remember that they’re just kids. It’s a difficult balance for parents that have a child with a disability. They have to be unafraid and unapologetic about the disability in advocating for the child. Yet the parents could be beset with all types of worries for the child’s future: what happens when the parents are gone? Will the burden of caring for the child with a disability fall to a sibling? Will there be money to take care of the child’s needs? What will happen when it gets too difficult for me to push my child’s wheelchair?
As real and difficult as these worries may be—and so many others, too many to mention here—it’s very important to hide these concerns from the child with the disability. Instead, talk to a friend, join a support group, get counseling, but don’t put this burden on your child. Of course, it doesn’t work the other way around: a parent should be a rock for the child with the disability. The parent should be compassionate and understanding of the child’s difficulty, always allowing the child to express his difficulties. But after listening to your child, offer comfort and cheering up.
It may seem a bit dishonest to hide your worries from your child, but it’s not about honesty or the lack of it, it’s about consideration. Your child has his own burdens; he doesn’t need your very grown-up worries on top of his own. You serve as a bolster to your child in a sometimes harsh world. You are his support. Make sure he knows he doesn’t have to worry about burdening you more than you already are and that you will always be there for him.
Because that’s what parents are for.