Parenting Kids with Disabilities: Accepting a Subsequent Diagnosis

858 words

7 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

Today's post in the parenting series is written by my sister, Tara.  A couple weeks ago, thinking about posts in the series, it struck me that many parents have kids who receive a subsequent diagnosis.  As I can't speak to that personally, I asked Tara if she wanted to guest post on the subject and she agreed.  Tara also suggests that previous posts in the series will inform and apply to this subject as well.

[Image is: Two silhouettes face to face  with words like Allowing, Warm, Value, and Breathe written on both.]

Dear Parents,

First, let’s take a moment to breathe.

Your child has been given a subsequent diagnosis, and there isn’t a lot of time for intentional breathing.  Or processing.  It’s one more thing.  (Maybe that thing feels like a relief.  Maybe it is traumatic.  Maybe it falls somewhere in between.)  You might feel overwhelmed.  In shock.  Lost.  Alone.

These are natural reactions.  Your reality has shifted, and it takes time to adjust to that.  And time is a luxury, right?  Chances are, you don’t have time at your disposal.  So, take this moment.  Sixty seconds.  And breathe.

I am not a parent.  I do not know what you’re going through.  I am an adult who was diagnosed with Cerebral Palsy as a toddler and a subsequent brain injury as a teenager.

The road to acceptance of a diagnosis can be a long one for both parents and children.  It is my hope that this post might start you and your child down that path.

So, how can you help yourself and your child?

Understand that you and your child will be coming to terms with the diagnosis simultaneously.

Accept that medical stability has to come before emotional processing for both yourself and your child.  Both of you might find yourself processing the diagnosis weeks, months or years later.  This is okay.  Give yourself and your child permission and a safe space to discuss the diagnosis.  (This could be within the home and/or in a professional setting.)

Control your inclination toward pity.

While it is important to empathize with your child regarding the difficulties that come with your child’s diagnosis, control your inclination toward pity.  This includes your tone of voice as well as unnecessary comments or compliments.

Your child’s life post-diagnosis is a new normal.  Struggles and difficulties need to be acknowledged.  Empathize in the same way you might with the most respected person in your life.  Holding your child in genuine high regard will let them know that the diagnosis has not diminished them in your eyes.

Try phrases such as:

“I’m here for you.”

“It makes sense that you’re struggling right now.”

“I would be upset too.”    

The notion of getting better.

Medical stability is always the goal.  However, the notion of getting better can be a tricky one when it comes to accepting a diagnosis.  Some diagnoses can result in a full recovery.  Others are lifelong.

When we speak of getting better, we often mean recovering fully.  More often than not, a child will not get better in that sense.

As such, it is important to frame any  physical, occupational, speech therapy or medical intervention appropriately.  These are meant to improve quality of life.  They most likely will not restore your child to their pre-diagnosis self.  And that is okay.

Touch base with your child on the anniversary of diagnosis day or traumaversary.

This day is significant to both you and your child.  It may symbolize a Before and After.

Saying something like, “Your diagnosis day is coming up - I have been thinking about it more.  Have you?” might open the door for conversation.   Your child may want the day to be as normal as possible.  They may want some sort of acknowledgement or celebration of the day.  It might be a difficult day or week for them.

Their feelings about the day (and yours) may fluctuate throughout the week, on the day itself, or depending on the year.  Treat your child and yourself gently during this time, and follow their lead.

Acknowledge that a subsequent diagnosis may impact your child’s identity.

Your child may tell you that they feel different post-diagnosis.  Being a brain injury survivor impacted my self-esteem and identity.  I felt fundamentally changed after the injury.  I was scared for years that my family and friends did not like or accept the new me because I had such a difficult time liking and accepting myself post-injury.  Reassure your child that feeling different is okay and expected.

“Life is one hell of a thing to happen to a person.” - David Rossi, “Criminal Minds”

Life changes all of us.  You are not the same person you were ten years ago.  Your child’s diagnosis is yet another life change - for them and you.  

“I love you” versus “I still love you.”

Saying the word still implies the word despite:  “I still love you, despite your diagnosis.”


Understand that, acceptance notwithstanding, your child’s diagnosis is an inextricable part of them.  Continue to process the diagnosis, and help your child do the same.  And love them.  Full stop.

***

Connect with Tara at tarasays1@gmail.com 

Parenting Kids with Disabilities: Helping Your Kids Accept Their Diagnosis

1,135 words

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.

***

Don't forget to connect on Facebook / Twitter / Instagram

Parenting Kids with Disabilities: Accepting Your Child's Diagnosis

1,322 words

10 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,

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.

***

Don't forget to connect on Facebook / Twitter / Instagram

Parenting Kids with Disabilities: Introduction

349 words

3 minute read

Table of Contents: 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,

You are beyond important.  You are the adults we grow up trusting.  Looking to.  Relying on to keep us safe.

[Image is: a father's hands and a mother's hands cradling their baby's feet.  The baby is wearing their wedding rings on their toes,]

I know there are countless resources out there for parenting a kid with a disability.  But I've never read one written by a disabled adult, who can look back on childhood, and give parents an exclusive as to what many disabled kids need.

Maybe you've parented before.  Maybe your child with a disability is your first.  You probably know by now that there are tons of aspects of parenting your kid with a disability that don't show up in any of the parenting books.

These posts will be for you.  For the next three months, get ready to dive into accepting your child's diagnosis, presuming competence, invisible aspects of disability, and much more.  My goal is not to cover everything - my goal is to give you something so you don't feel quite so overwhelmed by the unknowns of the amazing life you get to parent.

This will by no means be an exhaustive, complete, or the only correct perspective.  I know there are countless people out there with disabilities who would likely have additional information to add, or who would differ in their opinion on a subject.  That's understandable, and perfectly okay.  (As I like to say, my blog is called Tonia Says for a reason - no question that it's one perspective - my own.)

I know you love your child.  I know you want the best for your child.  I'm writing these posts because I want to help.  I want your child to grow up feeling validated and valued, disability included, and I want to give you insight into raising a child who is likely growing up a bit differently than you did.

I hope you'll join me this summer (and beyond - whenever you find these posts) to explore these topics with me.

***

Don't forget to connect on Facebook / Twitter / Instagram

I Was Called the R-Word...Now What?

422 words

3 minute read

I was a freshman in high school when I was first called the R-word.

I was leaving the cafeteria, and a guy - maybe a junior or a senior because I had zero idea of who he was - walked by me.  He looked me right in the eyes and told me matter of factly:

"You're an ishy r*t*rd."

Then, he kept walking, getting quickly lost in the crowd.  In a school where my graduating class alone was 600-some people, I never learned his name.  I never saw him again.

But the sting of his words had a lasting impact.

Because, how could somebody who didn't even know me casually hurl such a hateful slur and go about his day?  How could that be okay?

Well, it wasn't.

It wasn't okay in 1996 and it's not okay in 2017.

[Image: a pile of wooden Scrabble tiles reads NO HATE]

So what now?  What do you do when such a violent word gets used on you?

First, I want you to know I am so proud of you.  However you handled the situation.  Whatever you said or didn't say - could or couldn't say.

How do you move forward?  Well, here are some options:

1) Tell a safe person.  Tell someone you can trust.  Someone who values you as a whole human being.  Who loves you.  Who sees you.  Who gets what it is like to be you.  (If you don't have somebody like that, send me an email.  I'm here, should you ever need to talk.)


2)  Treat yourself gently.  After encountering violent words meant to reduce and dehumanize you, it can be easy to keep the negativity going.  To reinforce it.  But imagine you're talking to your most loved pet, or most cherished baby relative.  Would you use angry words on them after they were already scared and hurt?  No.  You would make sure they were comfortable.  Safe.  You would talk softly to them.  You would tell them it's not their fault.

It isn't yours, either.

3)  There is no limit to how often you need to talk about what happened to you.  What happened to you was not okay.  No one should treat you the way you were treated.  You deserve so much better.  And it's completely reasonable that an injury like this would take some time to process.  Take that time.

Remember that you are important.  You are needed.  You are worthy of love and respect.

You are.

Really.

Trust me.

***

Don't forget to connect on Facebook / Twitter / Instagram