Posts Tagged ‘ cerebral palsy ’

A Kid With Cerebral Palsy Who’s Got The Spirit of the Season

Monday, December 24th, 2012

Jenna Martin, 12, knows what it’s like to be a kid in a hospital. Born at 24 weeks old weighing 1.7 pounds, she was eventually diagnosed with cerebral palsy. Jenna learned to walk with the help of staffers at Texas Scottish Rite Hospital for Children in Dallas through therapy, braces, injections and surgery. As she writes, “When I was in the hospital I looked forward to the day when the cart came around. On the cart were toys, books and kid stuff they gave to you when you were in the hospital and waiting to be seen by the doctor in the clinics. These gifts took my mind off the pain.”

This year, before she turned 12, her dad asked what she wanted as a birthday gift. Jenna decided she already had enough in her life and that any gifts she received she wanted to give to the kids at the hospital. And that’s when JJ&B’s Gifted Gifts Foundation Inc. was born. The non-profit’s motto: “We ‘gift’ back.” Earlier this month, Jenna organized two local drop-off locations for anyone who wanted to donate presents; check out this video about this amazing young woman.

You’ve gotta love what she’s doing, but it also makes you consider how empowering it must be for her to in turn help others—worth keeping in mind as a confidence booster for a child with special needs.

Live in the Dallas area and have gifts to share? Or want to send some along? Contact Jenna here.

Image: Screen grab/wfaa

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The #1 Time Suck of Parenting A Child With Special Needs: Listen Up, Insurance Companies!

Thursday, September 27th, 2012

On average, people spend 7 minutes a day waiting for a cup of coffee, 20 minutes a day in traffic, 20 minutes a day waiting for the bus or train and 43 minutes waiting each time they go to the doctor, reports a new Timex survey. In another survey of 3,230 women by Real Simple and the Families and Work Institute, all mothers polled said they spent more than 14 hours a week on child care; 52 percent have less than 90 minutes of free time a day, and 29 percent had less than 45 minutes of time to themselves a day.

Wow. Considering all that, it is amazing that parents of kids with special needs are able to even sleep. Free time? HA HA HA. Also: HA HA HA HA HA. Even after the kids are asleep at night, I am typically filling out forms, Googling information or apps that could help Max, emailing back and forth with his therapists and teachers, you name it. Some days, taking a bathroom break feels like a treat.

I am raising two kids, one who has no particular special needs (other than an occasional ‘tude) and one who has cerebral palsy, and so I know full well how much actual “time” each one takes. The truth is, everything with Max takes more time, from dressing to doing homework to taking a bath. That’s just the way it is—I’m not complaining. Then there’s the time I spend throughout the year taking Max to therapists or special doctor appointments. I’m not griping about that, either: I will do anything and everything I can to enable Max and help him succeed in this world. In the end, the most significant time suck of all is my dealings with the insurance company. And, oh yes, I AM GRIPING ABOUT THAT.

It’s not that a call with an insurance company necessarily takes more time than, say, driving Max to the speech therapist (although I’ve spent as long as an hour on the phone with reps). It’s just that the calls themselves are particularly sucky time sucks because I’m usually calling about yet another claim that has mysteriously gone unpaid, though I have sent in all the required paperwork. Or I’m calling about an appeal that has gone unaddressed. These calls have the tendency to suck the life right out of you.

Typical conversation with an insurance company representative:

Me: “I sent in that information two months ago.”

Rep: “Let me check. Do you mind holding?”

Me: “OK.”

[Insert 10 minutes of not-at-all-relaxing Muzak]

Rep: “Hello. You’re right, that information was in the system.”

Me: “So why did I get a letter stating the information needed to be sent in?”

Rep: “I apologize, ma’am, I’m not sure.”

[Clonk clonk clonk: sound of me banging head against the wall.]

Years ago, when I was with a different insurance company, they assigned a case manager to our family at my request. That meant I had just one person who was familiar with Max’s history, one person to call when I ran into issues, one person who was basically on top of everything.

With our current insurance company I was told that, no, there is no way to assign us one dedicated claims specialist.

Sigh. There oughta be a law. As the mom of a child with special needs, I have so, so, so many demands on my time. (Did I mention I have so many demands on my time?!). It would make my life far easier to have a dedicated claims specialist. I suspect it would also streamline things on the insurance company’s end, too.

Are you listening, insurance companies?

Now you’ll have to excuse me; I’m off to treat myself to a deep breath.

From my other blog: 

Why is it so hard to find a place of worship that welcomes kids with special needs?

Max walks up the stairs by himself for the first time: the video

A Bill of Rights for Parents of Kids With Special Needs

Image of woman with alarm clock on head via Shutterstock

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What You Should Know About Kids With Cerebral Palsy: Wishes From Moms

Tuesday, September 4th, 2012

Today is World Cerebral Palsy Day. Before I had my son, I thought it was a terrible fate to have cerebral palsy. Although I didn’t actually know anyone with it, not being physically “perfect” seemed tragic.

Then I had my son, Max. He had a stroke at birth that caused brain damage. When the doctors at the NICU first brought up the term “cerebral palsy,” it terrified me. The disorder’s caused by damage or injury to parts of the brain that controls muscle movement (“cerebral” refers to the brain and “palsy” to muscle weakness). It is non-progressive. Sure enough, Max got CP. He has spastic four-quad cerebral palsy, which means that he has spasticity (tightness) in all four limbs; spastic CP is the most common kind.

Perhaps all this sounds awful to you, too. But now Max is nearing 10 years old, and I know that he is a wonder, not a tragedy. We were told Max may not ever walk; he walks. We were told he might never talk; he talks (not in the “typical” way, but he does his best). We were told he could have serious cognitive impairment; he has some, but he is very bright. He has issues using his hands, but he finds ways around that.

He is, in my eyes,  is as perfect as any other child. He is most definitely not a tragedy, and I try my best to help others see that.

There is so much that’s misunderstood about cerebral palsy, unless you happen to know a kid with it. I asked moms of kids with CP what they wish other people understood about their kids; this is what they had to say.

Kids with CP have plenty of potential. “Many people look at Angela and see a child with limited abilities—on the outside, she doesn’t look like the typical kid living next door. She doesn’t walk or talk, she can’t see very well and at age four is still in diapers. What people often don’t realize is that Angela is a very smart child who thinks and feels just like any other four year old little girl. She may not be able to walk on her legs but she scoots on her back like none other. She may not be able to vocalize the silly thoughts in her head that are making her smile, but she will try her hardest to use her iPad to attempt to communicate. Angela has the same potential and abilities to impact this world as her non-affected peers. She is able to shine and succeed given the proper tools and with a creative, fun filled approach to life.”—Karen Owens, The Owens Family

Realize that kids with CP can understand you. ”I would like the world to know that just because my child is physically disabled, that doesn’t mean that he can’t understand the things people are saying or what is going on around him. Don’t mistake a lack of physical ability for a lack of intelligence or awareness. I see people doing this all the time–they talk in front of Charlie like he won’t understand them.Imagine their surprise when he laughs at their jokes! He really is a listening to everything people say.”—Katy Monnot, Bird on the Street

Teach your children that my child is just like them. “Parents, you hold great power to mold your children’s perspective and perceptions about my child who just happens to have a disability. If you treat my child as different, if you talk about my child with pity, or if you stare at her, your children will learn from you. They will learn that my child is not a kid or a friend, but rather that my child is different and they will look at her with pity, they will stare. Instead, teach them that my kid is a kid, just like them. She likes to giggle at silly jokes, she loves to play games and Barbies, and she even loves to run— she might just need a walker, or a wheelchair, to use as legs. Nonetheless, my kid is a kid all the same. My kid could be your child’s friend, help me bridge the gap!”—Ellen Stumbo, These Broken Vases: Finding Beauty in Unexpected Places

Talk to my child like any other kid. “Baby talk is so cute, but not when a child’s not a baby anymore! My son has cerebral palsy and developmental delays, but he is a five year old. He knows he’s a big brother, but when people high five his little brother and then talk baby talk to him I fear it hurts his feelings. He wants to be included , he wants to feel important , and he wants a high five or two!”—Kate Leong, Chasing Rainbows

Know this: It’s not that kids with CP can’t do things—they just do them in their own way. “People may think that cerebral palsy puts limits on what Darsie can and will do, but that simply isn’t that truth. Darsie can do anything that everyone else can do, but sometimes it does change how she does things. For example, Darsie ran a cross country race with her schoolmates. She wore a brace on her foot to help give her the support to do that. Darsie packs her own backpack every day before school, but she has a strap on her zipper to help her. Darsie rides a bike with the help of training wheels. Darsie puts her own shoes on, with the addition of bungee cord type shoelaces. Darsie dresses herself every day, but her belt has velcro instead of metal prongs. Darsie does whatever she wants to do! Sometimes we just have to think outside of the box to help her accomplish them.”—Shannon Wells, Cerebral Palsy Baby

Give my child some space.  “Charlie’s cerebral palsy affects his balance and often, he is using his walker which affords him a large bubble of personal space. In groups and new environments he is timid and hangs back from the kids despite wanting to engage. I’d like for parents to encourage their kids to include him in the group by moving a bit slower near him and giving him the extra space he needs to feel safe.”—Sarah Myers, Sarah & Joe (& Charlie, Too!)

Don’t help too much. “Sarah Kate’s helpers in school have been mostly boys. It took me awhile to figure out why, as she’s not ‘flirty,’ but I now think I know: It’s because boys don’t over-mother her like girls often do . The boys give her the help she needs and asks for, and no more. Kids with cerebral palsy, from the typical person’s perspective, struggle to do things. But to them, their disability is just part of who they are, so they figure out ways around things. Sarah Kate didn’t walk until she was three, but she developed workarounds to help her do what she wanted to do. When her legs wouldn’t carry her somewhere she wanted to go, her arms would work almost as well. Learning to navigate the world as it is fosters independence and builds confidence; being catered to leads to helplessness and doubt, not to mention the fact that being required to do something might just be part and parcel of the therapy a childs need to do better and achieve more. Does Sarah Kate need help at times? Of course! But it’s always better to wait for her to make the request, rather than assume she needs it.”—Andi Sligh, Bringing the Sunshine
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A Happy Ending With An Extra Shot Of Joy

Monday, July 2nd, 2012

Three-year-old Layla McCloskey in Scotland needed a bike. She has cerebral palsy and her mom, Claire, wanted to get her legs moving to strengthen them and get her walking. But Claire was quoted a price tag of over a thousand dollars for an adapted tricycle, which she couldn’t swing.

Then she found a trike tossed out by a special needs school and she grabbed it. Staffers at a cycle repair workshop at a local center for adults with disabilities fixed it up, free, for Layla.

Guess who’s been pedaling around? As her mom said, “Layla just loves her trike. She’s a very determined wee girl and she does’t let anything faze her.”

Yes, everyone loves a happy ending: the kitten coaxed down from the tree limb, the destitute family that wins a lottery, the lost child returned to his mother. But when the happy ending involves a kid with special needs and you’re the parent of a kid with special needs, you get an extra shot of joy—especially because you can relate.

I know what it’s like to yearn for a child with cerebral palsy to walk.

I know how ridiculously expensive adaptive equipment can be.

I know what it’s like to see your child wheeling around on an adapted trike, a child doctors told you might not have much movement.

I know what it’s like to experience the kindness of strangers.

I know all this about being the parent of a child with special needs. So when I come upon stories like this, they put me on a serious bliss high.

And I’ll bet you can relate.

 

From my other blog:

A prayer for parents of kids with special needs

A Bill of Rights For Parents of Kids With Special Needs

 

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Inspiration From A Teen Entrepreneur (Who Happens To Have Cerebral Palsy)

Monday, June 25th, 2012

At 15, Tori Molnar has been more successful in business than many adults. She’s an entrepreneur and the President, CEO and founder of Utoria. It’s a unique direct-sales company that partners with small businesses and ropes in young women to sell products; the majority of partner companies are owned by women and teens. Goods sold include accessories, jewelry, electronics and health and beauty products.

Impressive, yes. Incidentally, she has CP. That’s her above, hanging out in Mary Kay Ash’s office at the Mary Kay Headquarters in Dallas, Texas. “They don’t let many people in there,” Tori says. “It was amazing!” It’s not surprising they let her in.

Here’s Tori with Spark & Hustle  founder Tory Johnson, the wildly popular business guru

Tori travels around the country talking about her experiences, and will be speaking at the Digital Family Summit, taking place June 29 through July 1 in Philadelphia. Her motto: “Inspiration, Motivation, Determination.” She recently answered a few questions for Parents.

How old were you when you were diagnosed with cerebral palsy, and how does the condition affect you now? 

I was diagnosed right after my 2nd birthday. I am affected on my left side, but as of right now the only problem I have is arthritis in my knee, and my kneecap is off-track. I’ve been working a lot on my range of motion in my ankle, which is now to almost +14 degrees. (Pretty darn close to my right! YAY!) When I was first diagnosed I could not use my left arm at all, and at 2 years old I was not yet trying to walk at all. So I’ve come a long way.

What prognosis were your parents given?

Unfortunately, my father died six months prior to my diagnosis so my mom had to navigate all of this on her own. They told my mom that it was very unlikely that I would ever walk, and that my bones were going to deform very quickly over the next few years, resulting in many many surgeries. We proved them wrong!

Growing up, which therapy was most helpful to you, and why? 

After the doctors told my mom that I wouldn’t walk, as we were leaving they offered getting her a handicap sticker for her car. She refused to take it and told them that I was perfectly capable of walking. What she did was incorporate things into our everyday schedule. If we were going shopping—which I love—she would park at the last spot so I’d have to walk. Every morning we would wake up and do Tae Bo, yoga and run laps around my backyard. When I was relaxing watching TV, she would sit with me and stretch out my arm. I also went through rigorous physical therapy, six days a week sometimes twice a day, but I think those things were most helpful because when you have something like CP that’s incurable, it makes you feel a little more human when you can go about a normal daily life.

What motivated you to start your company, Utoria?

My whole family had owned businesses for as long as I could remember. Construction companies, flea markets, accounting, antique stores—running businesses was all I had ever known. My parents would openly talk about them in front of me and I began experimenting with business at about four years old. By seven, I was reading business books and writing contracts and using stamps in my mom’s office to “notarize” them. When we were in the midst of a recession, I was looking for a business to start and at the same time I was mentoring friends and helping them launch their own businesses. That’s when I decided to start Utoria—I wanted to create a community where young women could come for knowledge and resources. I also saw it as a way for girls to raise funds to build their dream business.

What kinds of things do you like doing in your spare time?

I LOVE being active. I go to the gym four days a week, and swim the other three. I love boating, water skiing, riding dirt bikes with my 8 year old brother, and taking my St. Bernard for a run. I recently took a liking to canoeing. During the winter I like to go skiing, bowling, and see movies with friends. But out of everything, I love to travel the most. I get to travel all over the country to talk to students and professionals about how I started Utoria, my story, networking, and a lot of other key factors that have led me to be where I am today. I also travel to trade shows, events, and other things that allow me to connect with Utoria Girls and other young entrepreneurs.

What’s been the biggest challenge for you having CP?

Feeling pretty. I’ve learned to adapt things that most teenage girls do, but things like painting my nails, curling my hair, and doing my make up, can get frustrating at times because my CP affects my left side, so I have to adapt and conquer those types of tasks.

What is the biggest misperception other people have of kids/teens with CP?

That every person with CP is “disabled”. That label gets misused a lot. For example, I am not disabled. I just have Cerebral Palsy.

What’s the most important advice you’d give the parent of a kid with special needs?

Simply put, if you can treat them like a normal kid, they’re going to act more like a normal kid. No kid with any disability (especially a teenager) wants to be coddled or given special treatment. So that sense of normalcy is really empowering. That’s really what I credit for my current condition. My mom wouldn’t let me say I had a disability, or that I couldn’t do things. My whole life I was told that I was just as capable as every other human, I just had to work a little harder.  EXCELLENT ADVICE!

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