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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3 Years Blogging (Yesterday)

286 words

2 minute read

Days have just been flying by lately and I completely overlooked that yesterday was my 3-year-anniversary blogging here!

I wanted to take a minute to thank all of you who read, comment, share, etc.  This past year has been a bit of a rough one for me blogging wise, so thank you to everybody for sticking with me.

[Image is: A cake with a number "3" candle in it.]

Three years ago, I remember vividly that a friend and former co-worker shared an article about talking to kids about disability.  It had some good points, but it also - I felt - missed the mark on certain things.  It was written (as most things seemed to be then) by a parent.

I found myself wishing there were someplace I could refer my friend to, where they could find information from someone who actually lived with disability.  I was super aware that, as disabled people, we are not all the same, nor do we all have the same singular opinions, so I called my blog Tonia Says.

It has been a bit of a whirlwind experience honestly.  But mostly, it's been good.  Blogging here has opened me up.  It's allowed me to meet "my people", to feel so much less alone.  It's let me embrace all of who I am for the first time.  

I hope, perhaps, it's done the same for you.

Tomorrow, it's back to the summer series on parenting kids with disabilities, which will go through the end of September.

Thank you guys.  Truly.

If you need me, or want to talk privately, send me an email at toniasayscp@gmail.com.  I'd love to hear from you.

***

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Parenting Kids with Disabilities: Public Interaction

1,023 words

8 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,

When you bring your child with a disability with you on errands, does it sometimes feel as though they are dressed like this?

Me, age 5, center stage for the kindergarten music program in a top hat, with a whistle around my neck.  I was the ringmaster.

What Do You Do, Dear's Mary Evelyn aptly wrote about the experience from a mother's point of view in the memorable blog post: Want to Know What It's Like to Go Out in Public When Your Child Uses a Wheelchair?

It's a bit like that for the child with a disability, too.  Truth be told, I don't have many memories of being asked about my disability in public when I was small.  It seemed like more of an anomaly to see "the twins" (as me and my sis were called.)  Everyone in our area seemed familiar with us and my family often used strollers or a wagon in lieu of adaptive equipment in public, I didn't tend to draw people's eye for that reason.  (And I was much more curious to know where the cashiers at a given store slept at night, because I was sure they also lived where they were employed.  What if someone needed something in the middle of the night?  Who would help them?)

Perhaps it's where I live, or perhaps it's that people are bolder now, but since I've been an adult it seems that every time I go out, somebody asks if they can pray for me, pities me outright, or asks what happened to me.

Honestly, as an adult, when people react like this?  It's still hard to know what to say.

So I can imagine, it's similarly hard for you.

I read a lot of parent blogs and I know it's really common for you to have strangers ask about your children.  Some of you might feel like it's your duty to educate people, to make the world more informed for your child's sake.  Some of you might tell a joke in response.  Some might ignore the question altogether.

There is no handbook that details what to do or not in these situations and I am certainly not claiming to have all the answers.  But I do have a few suggestions:

1.  Keep in mind that what strangers are asking for is your child's medical information.  And that is, and should be, private.  The general public is not entitled to private information about your child just because they have a disability strangers can see.

2.  Ask yourself, "Would I be comfortable giving a stranger private information about me?"  If the answer is no, don't give it about your child either.

3.  Have a conversation with your child and ask them what they would prefer when people they don't know ask them questions about their disability in public.  I was the type of child who was mortified when people I didn't know asked about my disability.  Especially if it was in a way that implied there was something wrong with me.  But there are kids who would prefer to have their parents say something back, and there are kids who prefer to answer for themselves.  Find out what your child prefers and check in with them often about it.

But wait, you might be thinking.  What if somebody outright pities my kid?  What if they use the baby voice on my 7-year-old?  What if they push my 4-year-old's wheelchair without asking?  What if they ask to pray for my kid?

Just keep in mind that the most important person in any of these interactions is not the stranger you might be compelled to educate.  It's your child.  As bad as you feel, your child feels worse.  (Take it from someone who's had it happen over and over again.)

To experience these things as a child is scary.  It may be tempting to tell your child to "not let it bother you" when someone says or does something invasive.  This is true if a random stranger makes a mean, one-time comment about your driving, for example.  But when the comments and actions are specific to disability, this type of ableism will happen over and over again.  Your child needs to know how to handle it.

How?

Have a plan that your child is comfortable with.  Talk it through with your child (speaking or nonspeaking, always presume competence).  So you will both know what to expect and do if and when your child encounters ableism in public.

Know that it's okay to tell the stranger that used the baby voice on your kid, or asked you what's wrong with your kid that their remarks and/or actions are rude or out of line.  (If you are not comfortable with this, you can try asking a question: "How do you think my child feels hearing you ask that question?")

Know that it's okay to refuse prayer for your child, especially if it's meant specifically to "heal" them of their disability.  We don't need to be fixed or healed.  We are enough.  If it's okay for a stranger to pray for your kid, your kid gets the message that they must need it.  They must not be okay as they are.

Tell your child it's okay to say no, to be loud, or to set the brakes on their wheelchair if someone tries to push it that they don't know.

Let your child talk about it when these things happen.  Reassure them that their actions (whatever they said or didn't say) are okay with you.  Tell them you love them.  That you are proud of them.  If they have friends or role models with disabilities, let them connect with these people in the aftermath of a situation like this.  One of the most affirming things in these situations is to know that we are not alone.

Going out in public with a disability can be daunting, but with information you'll be better prepared and your child will feel safer, knowing they can count on you speak up when someone hurts them.

***

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Parenting Kids with Disabilities: Adaptive Equipment

1,063 words

8 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

For as long as I can remember, I have needed adaptive equipment.  I was so young, I don’t remember getting my first walker.  Crutches came at around age five, and I was nervous with them.  I could not walk reliably with them for a couple of years.  I was almost eight years old when I got my first wheelchair.

[Image is: Me dressed  in a light blue shirt, jeans and socks in my new blue wheelchair.  My sister, dressed identically, is standing alongside me, with one finger on my new chair.  March, 1989.]

While the idea of new adaptive equipment was great, mastering it took time.  I remember how difficult it was to push this chair at first, and how sessions of at-school physical therapy were dedicated to teaching me how.

While I liked having the wheelchair in particular, by the time I needed to use it more regularly in eighth grade, I found myself reluctant.  Though I used my crutches full-time at school, I felt that using my wheelchair would cause me to stick out even more.

It was very smart for my parents to introduce the idea before I moved to a larger high school, where I would definitely need my wheelchair, so I would have some time to warm up to the idea, and get used to using it on a more regular basis because it was going to be necessary for me to use it there.  But I didn’t have a great attitude about adaptive equipment in general.  I felt it set me apart from my peers, much like I felt IEPs did.

I had been raised to be very independent and whenever possible, to not need help.  To rely on a wheelchair, even though I needed it, felt like a weakness.  Like admitting I needed help.  Help, I was sure, was a negative thing.

BRACES AND SHOES:

I’m going to date myself a little here and admit that when I was growing up jelly shoes were all the rage.  They are, perhaps, what Crocs are now, fad-wise, and I always wanted a pair of my own.  However, because I required supportive shoes, flimsy shoes like jellies and sandals were never something I could wear, especially over braces.

All the shoes the other kids were wearing, I couldn’t wear.  Nothing fit over leg braces except basic Velcro shoes (before I mastered tying laces) and later, clunky hi-top shoes.

I wore braces when I was very young, and then again after my big surgeries at ten and eleven years old.  They were plain, and serious with their straps, and moleskin patches that did little to prevent them from rubbing and causing blisters.

I was not a fan of braces or the shoes I had to wear over them because, like my wheelchair, they were further indicators of all the ways I stuck out and was not like my peers.

WHAT CAN YOU DO:

Speak positively about adaptive equipment:

From the time your child first requires adaptive equipment, speak positively about it.  Even if you, the parent, don’t feel positive about your child needing a wheelchair, walker, or crutches (for example), it will help your child immensely to have a sense of confidence about what they rely on to move through the world.

To do this, talk about all the ways the adaptive equipment helps your child to do things.  Photograph your child in a way that includes their adaptive equipment, as well as portrait-style.  Involve them in the process of choosing a color for their new wheelchair, for example (if they are very young, give them a choice between two colors you, as a parent, could live with.)

Be mindful of how you speak about needing help.  Independence is great, and we all want it, even as kids, but there is nothing wrong with needing a hand.  Or needing a wheelchair.  No one gets through life completely alone.  We all rely on others for things every single day.  It’s not shameful that we are not all electricians or teachers or cable people.  Neither is it shameful for your child to ask for help when they need it.

Find ways for your child to connect with others who use adaptive equipment:

The power of community is huge.  There is nothing more affirming than connecting with others who move like you do.  Others who have wheelchairs, or braces, or walkers.  It makes us feel less alone and that is always a good thing.

I’ve also written about community, and some of the ways I found community via seeking out others like me.  It’s possible for parents to help your kids make these connections, too.

If you’re active online and connect to other parents whose children have disabilities like your child, try video chatting as a way for the kids to connect, and see someone else like them.  If your child is older, look into summer camps in your area for kids with disabilities.  (Ask adults with disabilities if they have recommendations - we are everywhere online and would love to help!)

Speaking of adults with disabilities, as your child grows up, they will crave having someone older who they can ask questions to.  How do you do this?  Form friendships with us.  It is so powerful for your child to see family members hanging out with people like them.  (The internet is an amazing way to form connections!)

Shoe-shopping?  Try buying a size larger:

The fantastic reality is that nowadays, braces come in decorated patterns, and colors other than institutional white, and wheelchairs come in more than three colors.  If your child has adaptive equipment in their favorite color or decorated with their favorite character, chances are, they will feel more comfortable and confident with it.

Shoes are another story.  Chances are, if your child is physically disabled in a way that means they wear leg braces, they might not be able to have as wide a selection as a nondisabled child.  However, if your child is a wheelchair user (even part time) consider checking out less supportive shoes that would not be ideal for your child to walk in, but in a size larger, to wear over their braces when they are in their chairs.

All these things have the potential to increase your child’s self esteem and sense of belonging.

***

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Parenting Kids with Disabilities: Surgery

1,539 words

12 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,

When your child has surgery, you will likely be advised of many things: most of them medical.  You will probably know more than you want to about the procedure your child is experiencing.  You will know when to get to the hospital.  You will know they aren’t to eat or drink anything the night before undergoing anesthetic.  But you may not know what a child who has been through surgery finds helpful.

I had many surgeries as a child.  Around eight total, by the time I was eleven years old.  The surgery I had at age three was the first I actually remember.  I remember undergoing anesthesia for the first time.  I remember how petrified I was not to be with my sister or my mom.  I remember how frightening the surgical staff looked in their masks and hats.  I remember being uncomfortable in pajamas that were not mine.  I remember crying as the anesthesiologist urged me to “say hi to Ernie and Bert.”

I was three, but I was smart.  I knew Ernie and Bert did not live inside that mask.  (And place blindness prevented me from locating where they might be in the room at large.)  It was terrifying and felt like everything wrong I had ever been told: Don’t go anywhere without Mom.  Don’t talk to strangers.  If a stranger tells you to do something you don’t want to do, go and tell an adult you trust.  If they try to give you something and tell you it’s candy, or something fun, know it could be a trick.  Don’t take the candy.  Don’t breathe into the mask.

But what if you can’t do that?  What if you’re three and all the scariest things are happening and Mom isn’t there?  What if you can’t stop crying, so you can’t help doing the one thing you know you shouldn’t?  What if you are totally alone?

--

So, what can you do if your child is having surgery?

1) EXPLAIN:

Don’t assume your child is too young or that their disability precludes them from understanding that things will not be usual when having surgery.  Use age appropriate explanations.  If they are very young, play pretend with a favorite toy, and use it as a surrogate to show them what will be happening.

This does not mean to tell your child everything that will happen to him or her.  A little bit of mystery is okay.  My parents were great about keeping my sis and I informed, but also protected from the extent of what we would go through.

2)  ANSWER QUESTIONS AND EASE FEARS:

If your child asks if it will hurt, be honest with them.  Don’t ignore their questions and don’t tell them it won’t hurt.  It will, but also reassure them that there will be in a place with lots of people whose job it is to help them feel better.

Reassure them that you (or someone who loves them) will always be there for them.

If possible, familiarize them with the hospital or items they might see there, so they will be less scared of the unknowns.

3)  ALLOW YOUR CHILD TO BRING A COMFORT OBJECT TO THE HOSPITAL AND INTO THE OPERATING ROOM, IF POSSIBLE:

No matter how old the child, surgery is traumatic, and as I detailed in the opening, we go into that operating room totally alone.  Allowing your child to bring a stuffed animal or a favorite blanket with them into surgery will help them feel less vulnerable, and will give them a little bit of comfort.

Make this a big deal.  Ask them prior to leaving which stuffed animal they would like to bring.  Make it as positive as you can.  Which stuffed animal gets to travel with them?  Which one does the best job of making them feel better?

I always experienced the nothing but the best from the operating room staff regarding my surgery buddy.  They were labeled so they would not be separated from me.  Leaving the hospital after a weeklong stay, post-surgery, family lore has it that one of my newly acquired stuffed animals was lost.  But hospital staff found it in the laundry and sent it back to us.

4)  FIND WAYS FOR YOUR CHILD TO BE IN CONTROL:

No parent likes to feel that their child rules the roost, but in times where a surgery is looming, finding ways for your child to be in control of what’s around them helps immensely.  There aren’t really words for the intense invasion surgery is on a child’s body.  We have not given consent, because children are too young to do such a thing and it is up to the parents to make the call about what is procedures are necessary to ensure that a child has the best quality of life possible.  As an adult, I understand that, but as a child, around surgery time, all I felt was intense pain I was not in control of.

Allow your child to choose a lot leading up to and during the surgery and recovery process.  (The closed choice is awesome, this means, letting them choose between two options you have already decided are okay.)

Some areas your child might love to have control over:

Meals, the day before their surgery.  Especially if money is an issue and you cannot do a big excursion, ask them what they want to eat for breakfast, lunch and dinner the day before surgery.

Fun activities the day before surgery:  This can be a family bike ride, a movie, or a game you all play together, or some time at the park.

Which stuffed animal, blanket or cuddly item to bring:  You’re not going to trust your four year old, eight year old, or ten year old to pack their own suitcase for the hospital, but give them a separate, smaller bag (maybe their backpack) to bring their comfort object and other items they might want to pass the time with (coloring books, notebooks, I-Pad, etc.)

Whenever possible, listen to them and honor their wishes regarding who is in their physical space and who touches their body: All children are (hopefully) taught at some point that their bodies belong to them.  If your child has surgeries, especially if they are frequent, they may feel like they are not in control of who touches them, or whether or not they are being hurt.  This can cause problems down the road if not addressed, and treated carefully.  If the nurse must examine their legs (for example) let the child choose which leg first.  Let your child count out loud before being turned in bed.  Let them choose who they would like to hold their hand while they have something scary done.

Who knows about their upcoming surgery and how much they know:  Especially if your child is older, they might want to keep their surgery relatively private.  Surgery is intense and traumatic.  It isn't dinner-table conversation, and it isn't family gossip.  Leave just how much is said to your friends and people outside of your immediate family up to your child.  If your child is younger, take their cues.  If they look uncomfortable at a public discussion of their surgery, respect that, and steer the conversation in another, safer direction.

5) RESPECT YOUR CHILD'S BOUNDARIES:

Whether your child is five years old, or 22, they deserve to have their boundaries respected.  That means when they are recovering and in pain, don't take photos of them and post them online.  If you would be mortified at someone doing the same to you while you were in a vulnerable position, don't do it to your children with disabilities.  They have a right to privacy, especially when they are going through hard things.  (If you absolutely must document your child's recovery, for some reason, photograph their stuffed animal.)  When they are feeling a bit better, and like smiling for pictures, then you can ask if they'd mind if you shared one of the smiley pictures.

[Image is: Tara (left) and me (right).  I am in a hospital issue wheelchair, both legs in casts.  I'm smiling, and Tara's making a silly face.  It's our fourth birthday.]

6)  CELEBRATE EVERYTHING:

Surgeries are trying not just for the child but for the entire family.  It can be hard to remember to breathe and celebrate the little victories along with the big ones in your child’s recovery.  Once your child is able to tolerate celebration, make a point to do this often.

Is your child being released from the hospital today?  Why not have a 30-second gentle dance party in the car to your kid’s favorite music?  Did your child master something in therapy they couldn’t do yesterday, even if it’s small?  Tell them you are so proud of them.  Can they sit up on their own?  Stand?  Bend their leg a little more today?  Bear more weight for longer?  Are they on one less medication for pain?  That’s huge.  Celebrate it.

Surgery is always tough, but it’s my hope that with these tips, it will be a little bit easier on your child, and on you, as the parent.

***

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Parenting Kids with Disabilities: Presuming Competence

782 words

6 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,

When I was seven years old and got my turn at helping the teacher in the morning by leading the pledge of allegiance, telling my classmates what was on the lunch menu and other such important things for second graders to know, I was nervous.  I didn't like talking in front of people, but I did like the idea of getting to do important jobs and helping the teacher.

Throughout the year, each child got a turn.  When mine came, though, every couple of words I spoke were interrupted.  A fellow second grader could not stop giggling, pointing at me, and telling her friend, "She's so cute!"

She meant it in the way a baby is cute.  This girl treated me just like that the entire school year.  Even though we were in the same grade, in the same class, even though I sometimes got better grades than her, she always treated me like I was beneath her.

[Image is: Me in 2nd grade, dressed in a hideous red sweater with a white collared shirt beneath and a black bow at the neck.]

Eight years later, when I was fifteen, a teacher in the Special Education department who was in charge of my IEPs brought me in for some testing in areas of math, reading and writing.  While I failed spectacularly at the math section, this teacher was shocked to learn that I tested at college level in reading and writing.  I still remember her over-the-top reaction when she asked if I knew how to spell omniscient and I did so without hesitation.  Without mistakes.

She often spoke to me in the same manner as the girl in my second grade class.  Like I was younger than fifteen.  Like she was shocked that I (somebody with a disability) could read and write so well.

While I've experienced a couple examples of this in my life, kids who are autistic, kids who have Down Syndrome, and kids with brain injuries experience a lack of presuming competence at an even higher rate.

Below, is a clip from the TV series, The Fosters.  In it, Jesús (16 years old, and recently home after being hospitalized with a Traumatic Brain Injury) and his family are celebrating his homecoming:

When Jesús's moms bring in the pizza, we can see that he tries to say something to his girlfriend, Emma, who's standing beside him.  He says "I don't--" but she cuts him off before he can finish his thought and tells him, "It's okay."

 Jesús asks Mama what the round thing is on his pizza.  She clarifies that it  is pepperoni.  His favorite.  Jesús says no.  Emma then says "You love pepperoni.  It's your favorite."  Though he says "no" and "I don't want it" multiple times, his family still insists that he try it.  At one point, Moms even take the pepperoni off Jesús's pizza with their hands and then call it a "cheese pizza."  As if he would not know the difference.

Tara said it best in our recap of the episode:  "Now that he is injured, his words fail to have weight. Jesús knows that, based on how he is treated.  He has told them no multiple times, but they are not listening."

The scene ends with Jesús throwing the plate and the pizza in frustration.  That, as Tara says "is the only communication the family takes seriously."

WAYS TO PRESUME COMPETENCE:

Even if your child cannot prove they understand you, assume they can. Here are some places to start:

1) Talk to your child in an age appropriate way.  If they are nine, speak to them as if they are nine. While some kids (living with brain injuries, for example) may need you to speak in shorter sentences, know that it's because they need less to filter, not because they know less now.  You can still show them respect by treating them their actual age and not using a "baby voice" on them.  (If your child does need an explanation simplified, it is up to you as a parent, to put it in terms your child can understand.)

2)  Respect your child's "no." Understand that brain injury, intellectual disability, autism and any other disability does not negate your child's right to say, spell, or indicate no, and for it to be respected.

3)  Know that behavior is communication.  Something like 90% of communication is nonverbal.  Accept your child's nonverbal communication as valid.

Presuming competence with your child who has a disability communicates respect.  Assume your child is capable of understanding you.  If you haven't thus far, it's not too late.

Start today.

***

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