Monday, June 12, 2017

Parenting Kids with Disabilities: Accepting Your Child's Diagnosis

Previously on Parenting Kids with Disabilities:  Introduction

Dear Parents,


I want you to look at these babies.  Above is a picture me and my sis at 18 months old.  The same age we were when we were diagnosed with CP.  We're sitting in inflatable Smurf chairs in maroon dresses, white tights and blue and white tennis shoes with red laces.  I'm leaning to one side, but smiling.  Tara looks particularly mischievous with a box of blocks in her hand.  One is near her mouth, slightly hiding her smile.

We're sitting in front of a big collection of presents.  Because it's Christmas morning.

We're not sad because a doctor said we have CP.  Because being in our bodies, and having our bodies move the way they do has always been normal for us, even at this young age.  We just want to open some presents, and get on with the fun.

I think part of the reason getting a diagnosis for your child is so hard for nondisabled parents to come to grips with is that it's a shock.  It's not common to be around people with disabilities.  Growing up, I rarely had friends like me unless I sought them out.  If you are not around people with disabilities on a regular basis, and if you don't have one (or more) yourself, it's a shock to have your child diagnosed with one.  Where, to me, the possibility of friends or family having a baby who gets diagnosed with a disability is always on my radar.  Because that is normal for me.

Another aspect that seems to make accepting diagnosis difficult is who you hear it from.  You hear it from doctors, right?  And doctors subscribe to the medical model of disability (where disability is synonymous with sickness, brokenness, and/or a need to be fixed.)  If a doctor is telling you your child has a disability that they can't do anything about, the doctor does feel sad about that.  Because their profession is all about healing.

But that doesn't mean your child is broken, and it doesn't mean that you need to feel guilty or sad about our diagnosis.  Know that, especially if your child has a diagnosis from birth or early childhood, it's going to feel normal.  I never felt resentful or angry at my parents because of my CP.  It was always just the way I was.  To me, they had nothing to do with it.  It's just something that happened.

Having said that, I understand that grief is a process that many (if not all) parents of kids with disabilities need to go through.  As a disabled adult who was once a kid with a disability, I'd say it is super important to work through your feelings.  Get help with processing it all if you need help.

Parent grief over a child's disability diagnosis has always been something I've struggled with, to be honest.  Because my disability is so much a part of me, and so much a part of most kids with disabilities, that grieving that, feels quite a bit like grieving us.  (If your significant other said to you:  I love you but the fact that you're a woman makes me so sad.  That wouldn't feel great, right?)  So be sure to make it clear to your child if they see you upset that your feelings are not about them.  Your feelings are about you.

Let's fast-forward about eight Christmases.  To the Christmas Eve when I was nine years old. Without knowing it, my great grandpa caught an important moment on camera.


Grandpa: Just the top part of Toni now! No sticks or anything. That's better that way, isn't it, Toni?
Me: Not to me...
Grandpa: [laughs gently] Why? Okay. Backing away... Backing away... There! Now, what do you think of that?

Though it's been years, I vividly remember this night.  I remember this exchange.  I remember how I started out happy, and how my great grandpa's words about how just the top part of me - me without my crutches - was better.

You can see when the words hit me.  I stopped smiling when he said "no sticks or anything."  My mouth dropped open in shock.  It took me a few seconds to figure out what to say back.  If I wanted to say anything at all.  But Grandpa and I had a good relationship.  I knew he wouldn't get upset with me for speaking my mind.  So I said, "Not to me."

But when he asked "Why?"  And then said he was "backing away" I didn't know he was zooming out.  It looked to me like he was standing in the same exact place.  It looked like nothing was changing.  You can see my face go blank.

At the time, in late 1990, video cameras were novel,  In fact, my great grandpa had just gotten the one he was using to document Christmas Eve happenings as a gift for the holidays, I'm fairly sure.  Prior to this, my only exposure to a video camera of this type was the previous year when my dad rented one for two days in order to film my little brother's birthday.  I was used to seeing my great grandpa use his Super 8 camera, which could not zoom in or out.  If he wanted to back away, he had to step back to achieve the desired effect.  In short, I had no context for what it meant for him to zoom in or out without the visual cue of him stepping closer or moving back.

By only accepting the parts of me that CP didn't obviously impact, it felt like that acceptance was conditional.  Like that love was conditional. And that felt devastating.  Because as children, we face a lack of acceptance everywhere we go.  Home should be the one place we feel safe.  Where we feel wholly accepted.  Otherwise, it feels like we are constantly in trouble for something that is inside of us.  Something we can't control.  Something we can't change.

Here are some things to do when you get home from that doctor's office:

1)  Remember that your child is still your child.  This diagnosis did not transform them into a creature.  If you are still pregnant at the time of diagnosis, name your baby.  Remember that your child with a disability doesn't blame you.  They feel like their life is very normal, because it's the only one they know.

2) Keep in mind that your child will face a lack of acceptance most places that they go in their everyday life.  Most people won't know how to cope with seeing a child who is "different."  But being home with you is an opportunity to show your child they are loved unconditionally.  That they are safe.  Disability included.  Because disability is a significant part of who they are, and greatly impacts their perspective and experience of the world.  Make yourself a safe person and your home a safe place for your child to be exactly who they are.

3)  Learn what you can when you can.  Looking up information about your child's disability probably feels super daunting.  While it's important to learn, it's also important to remember that disability is not one size fits all, and that the same disability can present differently in different children.

4)  Connect with other parents who are on this road with you.

5)  If you have not yet, start making friends with adults with disabilities.  Do a search for blog or other resources created by people with the same disability as your child. You'll see that many of us (like me) believe in the social model of disability, which states that it's society that disables, not a disability, because disability is not a bad thing.  

Take it one thing at a time.

And if you haven't heard it said yet, congratulations on the awesome kid you get to parent.

14 comments:

  1. Such an important message, Tonia!! What an awesome resource for parents. (And that video clip? Gets me every time. xo)

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    1. Aw, thank you so much! That means a lot to me. <3

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  2. This is great! Thank you! It sucked to see you so hurt by your grandpa's comments.

    "Remember that your child is still your child. This diagnosis did not transform them into a creature."

    Amen to this! When one of my friends became disabled,some people around me kept implying that he had somehow changed completely, like he had become a creature but as soon as I saw my friend again I saw he was the same as before the disability in terms of being a beautiful human being with the same personality and quirks. Interestingly it was other disabled people who implied he had changed into a "creature" the most.

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    1. Yes, and if it comes from other disabled people, it's likely from internalized ableism.

      Glad you liked the post!

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    2. Very true. The amount of internalized ableism I encounter on a regular basis is pretty shocking…and saddening. P.s enjoying the novel too!

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    3. Margot, I'm not as shocked by the internalized ableism because to me it makes so much sense that we (and people like us) might resent ourselves. We live in an ableist society. BUT PS I'm really glad you're enjoying the novel <3

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    4. I guess I am newer to internalized ableism…I guess what shocked me in my experience was that the people with the most internalized ableism would keep accusing everyone else of being more ableist than themselves. The hypocrisy and condensing behavior by people with internalized ableism made me angry.
      PS You're welcome!

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    5. It is possible to have internalized ableism AND to experience ableism from others (disabled and nondisabled.) Both are frustrating. Hopefully all your friends can realize the value that they have, and that it does not diminish according to ability.

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    6. Oh they were coworkers. Yes I am aware that we can experience both, but these particular people assumed it could only come from non disabled….I wish they would see their value too and I pray for them daily.

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    7. Well, we all live and learn. Hopefully, they'll be able to realize the harm in their words.

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  3. My mom says the best thing anyone said to her when I was diagnosed with cp, was my grandma reminding her I was still the same person (my grandma had had fairly severe RA since her 30s, so maybe she understood).

    Anyways, great post!

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    1. Nurse Bee, Your mom hearing that from your grandma (who also has a disability) makes so much sense <3 Thanks for reading!

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  4. This is truly beautiful and a good reminder than words from even those closest to us can wound deeply. Thanks for sharing.

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    1. I'm so glad you thought so! Thank you!

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