Monday, July 17, 2017

Parenting Kids with Disabilities: Adaptive Equipment

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery

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.

Monday, July 10, 2017

Parenting Kids with Disabilities: Surgery

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence

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.

Monday, July 3, 2017

Parenting Kids with Disabilities: Presuming Competence


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.

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.

Monday, June 26, 2017

Parenting Kids with Disabilities: Accepting a Subsequent Diagnosis

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis 

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 

Monday, June 19, 2017

Parenting Kids with Disabilities: Helping Your Kids Accept Their Diagnosis

Previously on Parenting Kids with Disabilities: Introduction / Accepting Your Child's Diagnosis

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 All About CP and Me, which I wrote.)

2)  Become part of 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.

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.

Monday, June 5, 2017

Parenting Kids with Disabilities: Introduction

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.

Friday, June 2, 2017

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

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 retard."

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.

Monday, May 29, 2017

Sister Date

Yesterday was a pretty amazing day.  My sis and I got up early and I went with her to work at a local store, where I browsed while she opened.

The walk/roll there was so lovely.  No traffic because of the holiday weekend.  Blue sky.  50-some degrees.  (That's warm where we live.)  Just all kinds of perfect.

Kind of like this:

[Image is a road with a blue sky, fog, a tree and a painted red house in the distance.]
I spent a couple hours looking at stuff and then Tara and I met up.  We did our shopping.  We stopped for coffee and hot chocolate on the way home.  And shared a delicious bagel with sesame seeds.

What was my favorite part?

Just talking to each other.

Just being together.

My favorite part was that - for once - no one said anything ableist.  Everyone's spontaneous, warm, "Good mornings" made me feel human.  Offers of help were genuine.  Not overblown.  Not steeped in pity.  The barista matter-of-factly asking if I wanted whipped cream on my drink and later telling me she "tried to make a heart out of the foam" made me feel human.

Being treated like a human being in public should not be rare or blog post worthy.  But it is, because I so rarely get the opportunity to come home feeling affirmed.  Feeling valued.  Feeling human.

My favorite part was that my sis wanted me with her yesterday.  And when I finally figured out logistics and agreed that of course I wanted to go with her and have a sister date - that I was glad she invited me with her, she said, "I always want you with me."

Is it such a big deal to be wanted?

To be treated with dignity?

For some of us, it is.

For some of us, it's the biggest deal.

And all those things made spending time with my favorite person that much more special.

Friday, May 12, 2017

Update

I thought it was about time for an update.

I took an unexpected blogging hiatus but connecting with a new friend with CP has let me know just how needed all of our blogs and experiences are.

The blogging hiatus afforded me lots of time to write National Novel Writing Month novels (in both November and April), post my thoughts on season 4B's The Fosters episodes (with Tara) and discover scary new shows like Stranger Things - which I like, even though Startle Reflex means we have to watch all the monster parts on mute!

Tara and me, twinning hardcore.  December, 2016

It's been so great to be able to have connections to the disability community.  If it's our bestie, who we can count on to rant to about CP-related things, or our other bestie, whose middle child has CP and calls us "her role models," those connections are so important.

Because when you've got friends who drop everything to come and get you in an ice storm?  Friends whose daughter has the same Startle Reflex that you do, and she (and your sis) both startle in tandem, while watching Finding Dory?  Friends' whose youngest daughter, took one look at Greenie and said emphatically, "I like that!  I like it!"...?  It matters.

When you have friends who are as excited about a novel you are writing that they read along?  And comment to every chapter?  And when you least expect it, they gift you with the most amazing companion journal complete with excerpts and corresponding pictures (even homemade silhouettes of a character who is not pictured anywhere...and they even make sure that that character's CP is visible in her stance...)  It matters.

As Meredith Grey would say, "You find your people...and you stay with them."

Wednesday, March 29, 2017

Tuesday, January 3, 2017

Great Disability Blog Posts of 2016 (Part 7)

Part 1 / Part 2 / Part 3 / Part 4 / Part 5 / Part 6

Today, we have the final four posts of what I consider to be the greatest disability blog posts of 2016. This time we have two by Ellen, one more by Mary Evelyn, and one more by Vilissa:

When a Stranger Thought I Was Disabled by Ellen at Ellen Stumbo

But while I sat on my daughter’s chair waiting in the hallway, a woman, who is not a regular staff member, turned to me and said, “Well aren’t you a pretty lady!”

I want you to get the scenario. Imagine a grownup talking to a little girl. Let’s say the little girl is two or three years old. Do you hear the tone of voice? Do you see the special smile? “Well aren’t you a pretty lady!” - Ellen Stumbo

The truth is, no matter how hard I try to convey what ableism feels like to me, there really is no adequate way for able-bodied people to truly understand.  This post is about as close as they can come.  I still remember the day I got a slew of indignant text messages from my friend, who had just experienced ableism...as an able-bodied woman.  I was, probably, less sympathetic than I could have been.  Instead, I was giddy, telling Ellen: "Yes!  That's what it feels like!"

If you've ever wondered at the damage ableism can do, but can't quite relate to disabled people when we share our stories, try reading this post (then read some of ours.)  Ellen does a great job conveying what ableism feels like.

[Image is: a close-up of a wheel on what could be a child's wheelchair.  The wheel is decorated with a design.  For more on wheelchairs, read the next post below, also by Ellen.]


When I Asked My Daughter, “What Do You Think I Feel About Your Disability?” by Ellen at Ellen Stumbo

“What do you think I feel about your wheelchair?”

“Hmmm,” she took a little while, “I don’t think you like it.”

“And why do you think that?”

“Well, I know you want me to walk.” She said. - Ellen Stumbo

An important, and frankly, really brave conversation between a mother and daughter.  Ellen took one of the very first conversations I had with her and used it as a jumping off point to talk with her daughter about her perception of Ellen's perception of her disability, and then, Ellen's actual perception of her daughter's disability. Such an important post.  Such an important conversation.

WHEN WE RECEIVE COMFORT FROM OUR CHILDREN by Mary Evelyn at What Do You Do Dear?

That’s when I heard my 4-year-old son’s voice, timid and confused. “What’s wrong, Mommy?”

I couldn’t even catch my breath enough to answer as my husband stepped in. “She’s alright, Simeon. Mommy’s just feeling sad for her friend right now.”

I thought the kid would be upset or maybe he’d go back to eating his breakfast, satisfied with the explanation. Instead he looked at me with concern and said softly, “I give you hug, Mommy?” Then, pointing to his shoulder, “You put your head right here?” - Mary Evelyn

I love this post because it shows that we, with disabilities can help others.  We can help our families.  We can comfort them.  Love them.  Be there for them.  It shows that parenting - and more than that - parenting a kid with a disability - is a two-way street.  Another post by Mary Evelyn grounded in respect and love.

White Privilege & Inspiration Porn by Vilissa at Ramp Your Voice!

I ardently despise inspiration porn, but as an advocate who focuses on the achievements and experiences of disabled Black girls and women (and other disabled girls and women of color), I do not have the “luxury” of picking and choosing stories that depict us in a positive, non-inspirational light.  Why is that?  Because our stories do not get the same or fair amount of spotlight and recognition as the ones that feature White disabled people. - Vilissa

An eye-opening post about how white privilege factors into inspiration porn.  Vilissa does a stellar job explaining this all the while sharing a story about a Black disabled little girl, who won a penmanship award earlier in 2016.

***

Which of these posts resonated the most with you, and why?  Now that you have read all the Great Disability Blog Posts of 2016, do you have an overall favorite or favorites?  Did this list give you any new blogs to read in 2017?  Sound off in the comments and let me know.


Monday, January 2, 2017

Great Disability Blog Posts of 2016 (Part 6)

Part 1 / Part 2 / Part 3 / Part 4 / Part 5

Today, we have a post from Jess, two from K, one from Vilissa and one from Kathleen.  I have loved sharing these with you guys and I hope you're gaining some insight from these great blog posts.  I know I have.  Tune in tomorrow for the final part of Great Disability Blog Posts of 2016:

the courage to listen by Jess at A Diary of a Mom

When a member of the community being hurt by what was intended as kindness says, “This hurts us,” shouting, “But it’s meant to be kind!” is not particularly helpful. - Jess

A great blog post by Jess about a conversation that is frequently had in advocacy circles.  To me, it reads as how ableism frequently masquerades as "niceness" and that when a group of people (disabled people) speak out and say "This is hurtful" people often say, "But we're trying to be nice!"  Very often, we, the oppressed group, go away from these kinds of conversations feeling like other people's feelings matter more than our safety, than our dignity, even, at times, than our lives.  Read this please.

[Image is: a curb with autumn leaves beside it.  What does a curb have to do with these posts.  Read K's below to find out.]


THE FIELD TRIP FIASCO: When everything ISN'T fine, but one person makes all the difference by K at Transcending CP

That night, I went back to my dorm room and sobbed into my pillow. I had held it together all day and I just couldn't anymore. It was yet another reality check that I am living in a world that wasn't built for people like me, a world where simple, everyday structures like stairs and cement curbs make my heart race and simple assurances like "it will be fine" from a physical therapist simply aren't enough. - K

One of my most favorite posts this year was written by K, doing what (I think) she does best: bringing her blog audience into our world.  This time, K shares about a field trip she went on, where she advocated for herself in advance about possible difficulties and was reassured by her professor (also a physical therapist) that it would be fine.  Needless to say, it was not.  K does such a fabulous job detailing the intricacies of instances like this, when one person's idea of accessibility and accommodations simply does not fit what we need.  This post is so much more than that, though, because it details just how you can be there as an ally, a friend or a family member, if you see us struggling.

The Nightmare Before Christmas: ESCALATORS and My Terrifying Weekend Experience by K at Transcending CP

I put my left foot first.

My right foot didn't follow.

My legs were tangled, going in two different directions as the escalator proceeded down, ready or not.

"HELP," was all I could manage to say. - K

I have never ridden an escalator and this recent post by K makes me so glad!  Another example of how seemingly innocuous things are not in the least when you have CP (and how quick thinking really can save the day!)

There Is No Such Thing As Transcending Disability by Vilissa at Ramp Your Voice!

I can never transcend disability because there is nothing to transcend from.  

To “transcend” means to “be or go beyond the range or limits of (something abstract).”

I cannot transcend disability; instead I can transcend from the ableism, discrimination, and stereotypes that are associated with being disabled.  - Vilissa

As someone who also embraces identity first language, but didn't always, I really appreciate this post by Vilissa.  I wanted to include it because I think it's important to show that not all people with disabilities are the same.  I feel this post in my soul.

Thoughts on the Sagamihara Massacre and Ableism by Kathleen at The Squeaky Wheelchair

Being disabled takes courage. But it’s not the kind of courage with which the world is comfortable. It doesn’t come neatly packaged with “heartwarming” YouTube videos or “touching headlines.” It is quiet, but fierce. It grows and grows inside of you until one day, you join the rebellion that is loving yourself in places and spaces that don’t always love you back. - Kathleen

2016 was also the year of the worst hate crime (that I can recall) perpetrated upon disabled people.  I have not been able to write about this myself, but Kathleen's words echo those I would write if I could.  If you did not know about this terrible act of violent ableism, read this post.  We must make the world a better place than one where people who are different are targets like this.  Being informed is a great start.  Reading Kathleen's post is a great way to do that.

***

Did you read these posts?  Which was your favorite?  Did you learn anything you didn't know before?  Let me know in the comments.  And/or be sure to let Jess, K, Vilissa and Kathleen to let them know your thoughts on what they wrote.


Sunday, January 1, 2017

Great Disability Blog Posts of 2016 (Part 5)

Part 1 / Part 2 / Part 3 / Part 4

Happy 2017!  Even though it's the new year, you're in luck!  I have even more blog posts to share from 2016!  Today we have two posts by Fox, another by Ellen, one by Rhema and another by Vilissa:

Performing Letter Talker by Fox at Fox Talks With Letters

I MADE A VIDEO WITH RUBY INTERVIEWING ME. I FELT NERVOUS ABOUT BEING IN A VIDEO AND THOUGHT I WOULDN'T BE ABLE TO DO IT. A TALKING, SINGING OR PERFORMING REALLY ALL I'VE SEEN ON VIDEO. I LETTER TALK SO I THOUGHT PEOPLE MIGHT THINK IT'S WEIRD. I'M GLAD I CONQUERED MY FEAR. - Fox

(Not weird at all, Fox.  I loved seeing your interview and thought you did a great job!  I think other people will love it, too!)

[Image is: a chalkboard that reads learning with a line below it and below the line, is the word schooling.  In today's great posts, two are about how important learning is to autistic kids, in particular.]


Please Don't Praise Me for Loving My Child With a Disability by Ellen at Ellen Stumbo

If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom. - Ellen

Ellen does a great job explaining why it's harmful for kids with disabilities to hear comments like, "I could never do what you do," made about them to their parents.  Seriously, go and read this.

Real Thoughts About School by Fox at Fox Talks With Letters

FEEL SCHOOL WAS A TRAUMATIC EXPERIENCE. - Fox

Fox shares some super important insight about how being taught below grade level and by teachers who did not understand autism remains traumatic for him to look back on, even though he is now homeschooled.  Very important post to read and consider.  I related to it a lot, because I also had a year in school where I was surrounded by ableism.

Speech to teachers by Rhema at Rhemashope

My strong desire is to have a challenging education. I want to be a scientist. Not something I would have thought so much possible years ago but now I think it is possible. Strong minds should have strong educations. Not strong minds should have strong educations too. Good education is a goal for me. - Rhema

This year was a big one for Rhema, as she gave a speech to teachers, about the importance of having a challenging education.  Like Fox, Rhema also spent time being taught below grade level, which was frustrating and angering for her.  Please read and listen to these kids.  It's so important for us to not assume a student cannot learn because they cannot prove they know something.

The Black Body, Assisted Suicide, & the “Me Before You” Connection by Vilissa at Ramp Your Voice!

Death and the Black body are intimately connected, so much so that death by one’s own hands that are not systemic based is tremendously taboo.  We see that “tabooness” in the ideals we ardently hold unfold in the aforementioned research data about assisted suicide that are prevalent in our community:  the right to die by any other means that is not tied to racism, systemic oppression, or saving another is frowned upon, and those who are pondering their right to die will most likely meet resistance from members in our community.  - Vilissa

One of the most eye opening pieces I have read this year.  Vilissa shares why a story like Me Before You likely would not exist with Black characters.

***

Did you read these posts?  Did you learn anything new?  Let me know in the comments - or better yet, let Fox, Ellen, Rhema and/or Vilissa know that you read their posts.