Category Archives: cerebral palsy

I’m thankful for the GAP

Words I never thought I would utter. But truly, I am thankful for the GAP. Ellen at Love that Max  posted a picture on Facebook of the latest GAP add. Giving them a shout out for including a girl with cerebral palsy.

I had to blow up the add to the full-view to find her.

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31 for 21

I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do.  I have participated for the past three years and will do so again this year. 

And this year I am starting on time, so bonus points!

October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?

Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.

Here is what Down Syndrome is not:

  • Down Syndrome is not contagious
  • Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn 
  • Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome 
  • People with Down Syndrome are not always happy. Just like all children they have their moments
Here is what Down Syndrome is:
  • People with Down Syndrome have jobs and participate in the Community
  • People with Down Syndrome have the capacity to love, to learn and to affect change
  • People with Down Syndrome life expectancy has grown to be that of most peers.
  • People with Down Syndrome have friends, know love and just like their peers have tempers
  • According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
  • Down Syndrome does not discriminate on race, age or income level
Having Down Syndrome is a life sentence, but it can be a beautiful life. 

The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.

I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.


Just what we all want for our children. To be seen just like everyone else.



 
To learn more about Down Syndrome, please visit the National Down Syndrome Society.

My Challenge: Bron

My friend Bron is sharing her Challenge today. Bron is a fantastic blogging friend. She writes about her families travel adventures. Let me say that I am in awe of her courage and sense of adventure!

When Kerri mentioned the challenge series to me a million little words came to mind.
Disability, parenting, cerebral palsy, lifting, access, advocating, parking, therapists, school…..then typical stuff like toddler tantrums, watching Dora a million times and homework! Oh and listening to Mine craft walk throughs via Coopers ipad.

Then I started thinking about daily challenges like getting out of bed and making school lunches. One word kept resurfacing and it was balance, I feel as though I am constantly trying to balance everything with my head just above water.
But I wanted to put a positive spin on challenge and look at it as something that is challenging but something we tackle head on.
So I am going to talk about travel. Travel with three kids, one of whom has cerebral palsy and uses a wheelchair.
It’s a fun challenge most of the time!
We love to travel as a family and have been on many adventures. Our favourite destination is South East Asia being only 8/10 hours from Australia. We are currently in Europe for six weeks. We have been on 2 planes, 7 trains, 2 boats, 4 taxis, 1 gondola and 1 cable car. We have stayed in six different apartments and heard 5 different languages. We have eaten French pastries, German sausages and so much pizza and gelato.
Our kids are 9,6,2.

In London

Access using a wheelchair has been really tricky. At one stage I lifted Cooper and his wheelchair off a train by myself while Andrew tackled the bag and sleeping toddler. The many bridges of Venice in Italy are full of steps and so many toilets seem to be below shop fronts. The roads are full of cobblestones and buildings are historic and not accessible.
However…..
On his Dads shoulders Cooper hiked along a mountain path 2200m in the Alps of Bavaria. He climbed a castle built in 1345 on his Dads back. He got a lift up the Eiffel Tower and rode a gondola on a Venice canal.
Best view, from Dad’s shoulders
We do it because we can and because we want to show Cooper he can do anything. We also want to show the world he can do anything. We want to make disability more visible and we want people we meet to remember that family on the train who didn’t let using a wheelchair stop them from discovering the world. 

****************

Isn’t this family amazing? I get anxiety taking Boo to the Zoo and they travel all over the world with their three children, one who has wheels. Her blog is amazing, for the pictures, the travel tips and the honesty of traveling with a child who has a disability. That yes Cerebral Palsy makes adds a few obstacles to getting on the train, but it doesn’t stop him from seeing the world. Or surfing it. At 9, Cooper has visited more countries than most adults I know.



Bron & her family are currently recovering from jet lag induced by their six-week holiday. Traveling from Australia to London with so many stops in between. With ONE bag. That is six weeks and one bag for five people. And they are still talking to one another! Check out their adventures at 3 kids, 2 parents, 1 backpack & 1 wheelchair.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

My Challenge: K

Today’s Challenge is from my friend “K” who prefers to remain anonymous. She is a young woman who one day soon will change the world with her writing, her heart, her well just awesomeness. K was a contributor to the Challenge program at Abby’s school. Allowing us to use her essay, The Little Dancer, that had such an impact on the Junior High students. 

“K” has Cerebral Palsy. She is one of the reasons the What’s Your Challenge? program at Abby’s school was so important to me. I wanted people to stop looking just at a disability and see the person first. I thought for sure I knew what her challenge would be. Of course, per usual, she surprised the heck out of me. 




I sat in the corner of the shoe store and broke.

            “I can’t do this anymore.”
            I was surrounded by boxes and boxes of shoes, shoes that weren’t made for people like me.
            Somewhere in the background, the sales associate was staring at me, and there was an odd expression on her face. Pity? Revulsion? Embarrassment? Or maybe she was just grateful that she wasn’t my mom, who stood over me with an armful of rejected shoes.
            It was 5:00 p.m., the evening before I was to give my senior project presentation, a presentation that determined whether or not we would graduate from high school. The rubric for the presentation included a phrase that made my heart sink: “Must wear formal footwear.”
            To make matters worse, as I was leaving, my teacher called over his shoulder: “Remember, no boat shoes and no sandals! The guys should wear dress shoes and the ladies should wear something like a nice pair of heels.”
            Many girls my age owned a closetful of shoes that fit that description, but I only had two pairs of formal shoes that I could wear safely: a pair of boat shoes and a pair of sandals.
            “I can call the school in the morning,” my mom offered, “and ask them not to penalize you for your shoes.”
            “I don’t want them to make an exception for me,” I said, my tone desperate.
            So my mom took me to the mall for a last-minute shoe-shopping trip, my own personal version of hell. Each store was the same…the sales associates approached us with their fake, overly-cheerful smiles, all too eager to help, and returned with a pair of shoes for me to try on. Then they’d hover over me, watching closely as I tried to cram shoes on my feet, and their chipper smiles would fade into blank stares as they watched me walk.
            I had told myself that I would be strong, and I managed to keep it together for four stores in a row. And then, at the fifth store, the associate brought out a pair of heels.
            “She . . . those won’t work for her,” my mom said.
            Tears sprang to my eyes, and I turned away to hide my face.
            “It’s not fair,” I whispered. “I just want to wear pretty shoes like everyone else, and I’m tired of people staring at me like I’m some kind of freak.”
            My mom set down the shoeboxes and looked me in the eye.

            “Listen to me,” she said, just loud enough for me to hear. “This is your challenge. I know it’s hard, but I’ve seen you overcome so much in your life and I know you can overcome this. Shoes don’t matter. You could wear a pair of sneakers with your dress and you’d still be beautiful.”
            With that, she took my hand and turned to the still-gawking sales associate:
            “I think we’re all set, thanks.”
~
            The next day, I slipped on my boat shoes and presented my project to the panel of judges: a teacher and three members of the community.
            As I presented my project—I had joined an acts-of-kindness group whose mission was to help others with theirchallenges—I spoke of Tanner, a boy with cerebral palsy who was homebound after surgery. His mother didn’t have the financial means to purchase Christmas presents for him and his sisters, so our group banded together to buy them gifts. I bought Tanner’s present—a basket brimming with DVDs and popcorn, because he was a movie buff—and signed an anonymous note explaining that I had CP as well and I understood what he was going through.
            When I finished, one of the judges looked at me with tears streaming down her face.
            “Thank you,” she said, her voice breaking. “For Tanner. My daughter has CP too.”
Just then, I knew that what my mom had said was true. Shoes don’t matter. Shoes don’t define us.

People do.

****
Alright, who wants to take K shoe shopping with me? As in shop til she cannot shop anymore. And if we cannot find shoes that are beautiful and comfortable we knock on Manalo Blahnik's door and demand he design something immediately. Or some other famous shoe designer's door. I'm sure we can find at least one.


"K" is one of those gorgeous people. Inside and out. She is the reason I wrote the letter for Boo. I am happy to call her friend and hope that my daughter Abby grows up with "K"s character. You can read more of "K"'s writing at her blog, Transcending CP: Shattering the Limits of a Disability



What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Actions matter

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

“Why is that person black”

“Why are those two girls kissing” 

“Where are his legs”

“What is that thing in that boy’s throat”

As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.


A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.

But why should she be embarrassed by her child? 

Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? 

I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.

I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.

Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.

In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.

There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?

Here is the answer: YES! A resounding YES!

Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).

Kids just want to ask the questions. It’s the parents who want the details. That is okay too. 

Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello? You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.

Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents.  She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning. 


You should get to know her and others like her if given the chance.  It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

My Challenge: Julia




All of us have challenges. Each and every person has to struggle to do something. This Spring at Abby’s school we charged the staff and students to share their Challenges. From the cute (can’t catch butterflies) to the heartbreaking (my mom died) every child and teacher shared.  With sharing came hope. Sharing led to compassion. Sharing led to being free to say that while the child might have a challenge, the challenge wouldn’t stop their dreams.

After I posted the program my friend Kristi at Finding Ninee encouraged me to make a Challenge Series. In reaching out to a few friends the response was amazing. May I introduce you to my first guest, Julia.


Julia is a wonderful little girl. We first met her and her family at the Pediatric Therapy. She spends hours each day working in school to learn how make her cerebral palsy work for her. This little girl is a fighter. Defying the odds and expectations of anyone foolish enough to try to put limits on her. Julia loves swimming, horseback riding, picking her sister up at the bus stop and bike riding.

Julia is 5 years old and her challenge is Cerebral Palsy. But don’t feel bad for Julia’s challenge, she just needs some extra time and help. Her smile says it all: Her Challenge makes her stronger.

There are over 800,000 persons in the US with Cerebral Palsy. Cerebral Palsy is a group of disorders that can affect movement, learning, hearing and thinking. Like many other syndromes, children and adult with Cerebral Palsy are as unique as their personalities. To learn more about Cerebral Palsy please visit United Cerebral Palsy

Thank you, Julia for sharing your smile with us today.

This is the inaugural post for the My Challenge Series.  To submit your challenge, take a photo holding a sign that says, “MY CHALLENGE IS X” with a short about how you do not let your challenge define you to firebailey@Gmail.com