Monday, July 31, 2017

Parenting Kids with Disabilities: Adapting

538 words
4 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,

One of the questions I see from time to time on parenting blogs and/or social media is: "How will my child do X?"

How will they be independent?

How will they grocery shop?

How will they get toys they want out of the toybox if they can't reach because they can't stand up?

[Image is: Me, waist deep in our strawberry shortcake toybox.  Only my backside and legs are showing, because the rest of me is inside it looking for a toy.  My sis is on her knees outside it, resolutely holding onto my leg, so she can pull me out once I have found what we need.  We are about three years old.]
The short answer is, they will adapt.  Look at the picture above.  No one told our mom that one day her toddlers with CP would come up with a genius way to reach their toys.  Mom was not always getting everything for us.  She let us figure it out. And look at what we came up with!

If your child was born with a disability, or has had one from early childhood, they'll grow up finding ways to do things that work for them.  Chances are, if a grown-up asked us before we got this toybox how we would get toys out of it that we couldn't reach, we would not have been able to tell you.

A lot of adapting is trial and error.  It's letting your kid figure out ways that work for them.

And, chances are, you will become a pro at adapting stuff for your kids, too.  My dad and grandpa got really good at building and making things that just didn't exist when I was growing up.  Our aunt sewed all our clothes until we were about six months old and could wear newborn outfits.  Mom and our grandmas sewed Velcro onto all of our jeans so that we could be independent in the bathroom without having to worry about the daunting fine motor task of unbuttoning buttons or snapping snaps.  (Anything that required two hands didn't work for me as I always needed one to hang on and keep my balance.)

It's not possible to have the answer to everything, and that is really scary.  It's okay not to know what grab bar to install for your kid in the bathroom.  It's okay not to know how your kid is going to buy groceries when they are still four years old.

They will figure it out.  Adapting is second-nature to them.  They are totally used to trying things one way and if that way doesn't work, they try another, until something does.  And don't forget the adults with disabilities.  We might not know how to build you a thing, but we can give you recommendations and/or point you in the right direction.

Trust that knowing how to adapt is a great life skill that your child is getting a head start on.  Instead of framing it like, "Oh, poor them.  Look how hard they have to try."  Try thinking about it like: "Look at my kid's ingenuity!  They are so good at figuring things out!"

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8 comments:

  1. Oh I love this so much! Adapting is awesome...and that picture of you and Tara is one of my favorites! <3

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    1. Hahaha, I'm so glad. That's classic Tara and me.

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  2. This could not be more true—and your last line ought to be a magnet on the fridge of every parent of a child with disabilities. It is all too common to have anxiety about how your child will do things, especially when you have not previously known a child with a disability. I used to worry about how Max would hold a spoon. He does, of course. Sometimes, parents do need to come up with solutions/equipment, but then obviously the goal is to step back and let our children go to it.

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    1. So glad you're reading along now! (Feel free to check out any of the previous posts linked at the top if you'd like / if you have time.)

      And yes. Sometimes, we will make the milestones you're waiting for. It may just take longer. And if we can't, know that it is not for lack of trying on our part.

      My parents and grandparents were definitely integral to helping us adapt things and find solutions we could not on our own, but it was a team effort!

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  3. Adapting is how the entire human species has survived for thousands of years.

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    1. Yes! And we are just trying to survive in a world not made for us.

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  4. I'm a worry wart! I'm better than I used to be but I've asked these very questions! The future is an unknown and I worry for James. You have such a good Outlook and I'm so glad my daughter sent me this link. She is also the mother of my 9 yr old grandson James who just CP.

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    1. Gmama Jane, I know! My grandma is the same way! It's from a place of love, too. That's clear. It is hard to let go, but so good for your grandson if you can be there, but let him try to figure some things out for himself. With adapting, we often don't know what will work until we are given the freedom to try <3

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