Parenting Kids with Disabilities: Helping Your Kids Accept Their Diagnosis

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9 minute read

Previously on Summer Blog Series 2017: Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like / Identity / Inclusion vs. Accommodation / Community / Advocacy / Autonomy and Consent / Conclusion

Dear Parents,

Now that you are on the road to accepting your child's diagnosis, it's time to ensure that your child can accept their diagnosis, too.  The fact that you are accepting of your whole child will go a long way toward helping them love their whole selves, too.  But there are other things you can do.

Depending on how your child came into your family, you may already be familiar with respecting an adopted child's birth culture.  If you've adopted a child that is from a country other than the one you currently live in, it's important to make sure your child has a connection to that place.  Maybe you cook food from your child's country on a special day.  Maybe they have books or toys from that country.  And even better, if they have a place where they can connect with other people from their country so they feel less alone.

It's similar with a child with a disability.  Their disability means they are a part of a larger community of people like them.  People with the same experiences of the world, the same facial features, the same ways of expressing joy or fear, the same ways of moving through the world.

I was lucky, in that I grew up with a twin sister who also has CP.  And though we have different types and different experiences (regarding visible and invisible disabilities) it was always helpful to have a sibling who knew what it was like to have a surgery.  To wear braces.  To miss school.

Tara (left) and me (right) cuddling in a chair at around two years old.  Both of us are wearing pink nightgowns and blue knee socks.  Tara's wearing a brace on her right leg.]

So what can you do?  Especially if your child doesn't have the luck of having a sibling with a disability to relate to?

1)  Read a book together.  The biggest thing you can do to promote acceptance of your child's disability is to talk about it.  Don't be afraid to bring it up.  Your child's disability is not a dirty word. So name it.  Don't talk around it. To help with this, I suggest finding a book to enjoy together that talks about your child's disability in a positive way.  It can be a tricky task to find a book about disability that is accurate and doesn't frame disability as othering or tragic.  The key here is to look for books written by people living with the same disability as your child.  

If your child has CP, I suggest 2 books I wrote: All About CP and Me, (a children's book, which explains CP in a straightforward way) or We Belong (middle grade fiction about twins with CP.)  There is also the middle grade novel Mia Lee is Wheeling Through Middle School written by Melissa Shang and Eva Shang.  Mia Lee has Muscular Dystrophy, just like one of the book's authors. Also (out in 2021) and a great read for middle graders and beyond is The Chance to Fly by Ali Stroker, who, like her protagonist, Nat Beacon, has an SCI and uses a wheelchair.

2)  Talk to people from your child's community.  It can be tempting to surround yourself only with other parents of kids like yours.  But don't forget about your child's community.  Your child will grow up (if they haven't already.)  And it speaks volumes to a child with a disability when their parents make friends with adults like them.  It means you are seeking people like them out.  That you see them as worthwhile, and valuable, and want to spend time with them and learn from them.

3) Celebrate.  Celebrate your child's strengths.  They often have them because of their disability.  Did your kid figure out an awesome new way to carry a toy from place to place?  Are they adept at picking out patterns?  Are they great at making sure nobody gets left out?  Celebrate that, and don't leave disability out of the celebration.  Disability is an integral part of who your child is, and often the only message they hear is how disability is detrimental.  Challenge that narrative.  Celebrate your child and their strengths borne from their disabilities.

4)  Find respectful depictions of your child's disability in the media and watch together.  Again, this one can be tricky and I'd again err on the side of content that is created by people with the same disability or at least has been recommended by us.  (Note: If the media discusses "overcoming disability," know that it is not respectful.)

*For your young child with CP, I recommend episode 1x31 of Daniel Tiger's Neighborhood, "Daniel's New Friend; Same and Different."

*There's also this video of professional dancer Jerron Herman

* If your kid with CP is in high school or beyond, check out this hilarious episode of Advice You Don't Want to Hear by Maysoon Zayid

5) Let your child go to camp or join a sport for kids with disabilities.  I write about camp in a later post, but suffice it to say this is can be life-changing.  And I know from talking to a young friend with CP that seeing a wheelchair basketball team fostered in her a desire to play a wheelchair sport.  Look around your area.  See what's available.

5) Encourage your child to make all kinds of friends.  The reality is that most of the peers your child will be around at school and at home will be nondisabled.  That's okay.  It's okay for them to make nondisabled friends.  But encourage them, too, that they can make friends like them if they want to.  If your home is accessible, and you know your kid has a friend who uses adaptive equipment, make sure your kid knows their friend is welcome at your house.  Kids don't want to stick out, they want to be just like everybody else.  Having friends like them will help with this and make them feel more like they belong.  And, to be clear, they absolutely do belong.

6) Look for role models.  Be aware of the messages you send your child when you see another disabled person in public.  Instead of lamenting that they are taking too long, saying you feel bad, or pondering what their disability might be, try something like: "I really like their wheelchair," or "When you grow up, we'll make sure you can pay for groceries, too."

I imagine posts like this have the potential to be overwhelming.  So start small.  Try consciously doing one thing each day that can help your child accept their diagnosis.

And remember that if you're on the road to accepting your child's diagnosis, too?  That's a huge step in the right direction.

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