Little boy in hospital

What Love Is When You Parent Kids With Disabilities

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Love waits in countless waiting rooms of countless doctors for appointments and therapies.

Love smiles at the nurses because you need them on your side.

Love does not dishonor the knowledge of specialists, it does not point out to the Doctor that you know all the “doctor-ease” they whisper to interns.

Love spends sleepless nights researching.

Love is a medical advocate.

Love remains calm when a nurse is digging around looking for a good IV vein.

Love holds a screaming child down for procedures.

Love is bold enough to say “stop.”

Love can recite endless lists of surgeries, medications and dosages.

Love knows how to smile so that the child isn’t scared.

Love cries and screams into a pillow in a hospital bathroom.

Love knows the wrongdoings but uses them to be an empowered advocate.

 

Love does not delight in a broken school system but rejoices in an IEP that is followed by all on the team. Love makes every efforts to set the child up for success. It knows the law and special education codes.

Love protects, always trusts its instincts, holds to hope of a good day’s report, holds educators responsible.

Love pushes past those who can’t see potential.

Love sees potential.

Love never fails because it always tries.

When faced with doctors, teachers, therapist and experts that look into a still not lived future, Love hears them say “never” but “never,” will be silenced.

Love knows that “different” is not a negative term.

Love knows that different is beautiful.

Where there are whispers, pointing and staring in public, they will be ignored — where there is knowledge and a future to be found, Love will travel and save to make it happen​.

Love is happy to sacrifice.

Love is a force.

Love is a mother.

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My Life With Cerebral Palsy Is Like Yours

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What would I do without my cerebral palsy? Walk by myself? Talk with everyone understanding me? Or just have a “normal” life? Truthfully, I wouldn’t trade my life for anything!

In my 20 (almost 21) years, I’ve realized I have a normal life, but with a unique twist. I have endless mountains of therapies and doctors’ appointments. Some people might think that is all what people with disabilities lives consist of, but that is not true. We can often do things other people do, but we do them differently.

Some people say that parents of kids with disabilities won’t take their children to practice or watch them play sports. This might be true for some parents. But for mine, I had them chauffeur me around since day one! When I was 7 years old, I played T-Ball. My parents would put me in my gate walker and away I went. I needed help with hitting the ball but other than that I did it all! As I got older, I went out for band in fifth grade; I played the drums on an electric keyboard. Man, I really could play that thing! I did cheerleading in seventh grade, had practice every day and I had to cheer at all of the football games. When I got into high school, I went out for individual and large group speech. I was the first person with a communication device in speech group. That started my public speaking gigs; I started to give my speech to colleges, speech pathologist conferences, and schools around Iowa and Minnesota.

Some people say that parents will not talk about their kids’ grades and milestones.  Umm, what? I hope my parents talk about my grades and milestones because I didn’t work my butt off for nothing. At the age of 3, my parents sent me to preschool. After 6 months of going to school,  my preschool teacher told my parents, “This girl has something in her head, and it’s called brains!” Her room was for children with disabilities, mostly intellectual disabilities. And there was me, the only one with a physical disability.

My preschool teacher taught me how to read when I was 3. Many 3-year-olds would want to read with pictures — but not me. I would get so mad if they showed me a picture and not the actual word. I thought people would think that I couldn’t read if I used pictures. So Mrs. Crawford got it, and she taught me real words. While the other children played and did other things, I was on the computer, and I played a game with animals that taught me how to read and spell. Weird as it sounds, my reading skills came from a giraffe and a mouse.

Then when I was 6, I got placed into a “regular” kindergarten class. Who would have thought that a little tyke like me would be in a regular class? Obviously my parents and my preschool teacher, and I didn’t see that I was any different than other kids my age. From that point forward, I was mainstreamed into regular classrooms.

Another thing that annoys me is when people say that disabled children don’t get to play with their brothers or sisters. If you have a brother like mine, you don’t get away with just sitting and doing nothing. We had an exercise mat, and he set me up on my hands and knees. He put a football a few feet away from me, and he would go on the football. “Hut hut,” he’d yell, then I dove as hard as I could to get the ball before he could get it. He dragged me outside to play in the sandbox; he always treated me like a brother should treat a sister.

Also some people say disabled people “can get away with a lot” or “they can slack off  because they are disabled.” Truth is, I wouldn’t stand for doing absolutely nothing and my parents wouldn’t let me slack off. I would go to school, after physical therapy or occupational therapy or speech therapy (it depends on the day), then practice for sports/speech/school activities. Then finally at 6 p.m. when I got home, I’d do my homework until 10:30 p.m., then get to bed  because tomorrow, I’d get to do it again. Truthfully, this is what mine and many other young people with disabilities’ lives consist of. If you get the lucky end of the straw and don’t get too much homework or your therapy gets cancelled, you get to do anything what you want, but it only happens once in a blue moon.

Sometimes I just want people to see me how my family sees me, and how I see myself. But then I’m kind of glad they don’t, because it makes me appreciate my family and friends more. And when I meet my future husband, I will appreciate him too!

People with disabilities, like any other person, have to beat the odds that aren’t in their favor every single day. Yes, it gets tiring and some days, giving up sounds good. But we have to stay strong for our parents, siblings, and for ourselves. To stop people from looking down on us, we have to believe in ourselves. We have to deal with people that talk baby talk to us and make ignorant comments.

People with disabilities can have a normal life like everyone has. We have similar experiences like going out for sports or playing with our brothers or sisters. We have goals like everybody does. I want to be the first speech pathologist with a communication device, and I want to open my own clinic. Trust me, it isn’t easy. Like everyone else, people with disabilities have to work our butts off to get what we want! We might get laughed at or be told we can’t do it, but we are strong enough to break down the barriers we’re up against.

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Thinkstock image by James Quigley.

 

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What Cerebral Palsy Has Been to Me

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How do you define the relationship you have with your condition? My cerebral palsy has been many things over the years. It’s been a cruel brother, a tricky ally, an overactive advocate, and that clingy friend you don’t want at parties because for some reason he gets weird when there are lots of people around. On rare occasions, once in a blue moon really, he can be the wisest of teachers, even if learning my lesson means losing a scuffle with a pair of pants. They were “Lucky” Brand, of course.

I’ll begin with a bit of backstory. Due to my spastic diplegia, and due (at least in part) to a considerable effort by western medicine to dissuade me from intense exercise, I sort of “bounced” in and out of a wheelchair throughout my younger years. When college came around, I thought I’d use my status as a feisty 18-year old to refuse wheelchair assistance. I managed pretty well ignoring doctors’ orders at first. I even went as far as majoring in exercise sports science. Things were going awesome until one fateful Sunday.

It was my grandmother’s funeral, I’d just been 86’d (dumped, for the laymen), and I got “Sonny Liston’ed” by the Muhammad Ali of blue jeans. Here’s the slightly longer version of that last bit: I was wrestling the garment over my KAFO brace keeping my left leg stable, and somehow, rough fabric got caught on the stainless-steel-hinged knee joint. Out of frustration, I yanked up as hard as I could, straightening my left leg on the same motion. In a snap, the jeans broke free. I heard an odd crackle, followed by the kind of pop that makes your stomach turn. So much for a balanced breakfast.

My eyes closed in fierce defiance of the pain. My body knew I should not bear witness to the wreckage that was once my fragile kneecap. There were no words to describe how dislocated it had become. The worst hurt, however, came from an incredibly selfish thought creeping up right after the incident. It was my grandmother’s funeral, and all I could think was: what will my family say now that I’m stuck sitting down all over again?

Despite the trauma that I went through, and the typical heaviness that leans over a funeral, I felt a sense of joyful release in the air. Maybe it was getting to see my family again. Maybe I felt my grandmother was free. Maybe it was all the Percocet. Either way, I couldn’t help but think things were going to be OK. I know you’re supposed to be sad at funerals, but that day I honestly felt like my own mortality was smiling at me. I decided if I ever wanted to stand up again, I’d have to start by looking in that direction, even if life wasn’t all it was cracked up to be.

Several months later, despite a wonderful surgeon, great medical care and lots of rehab, doctors weren’t sure whether I’d find my feet on the ground again. I stayed positive despite their concern. I needed to stay positive. I was about to go to my cousin’s wedding after all. Nobody likes a sad sap at weddings, unless we’re talking tears of joy.

I managed to stay joyful and roll with the circumstances all the way up to the reception. Then my heart fell apart at the sight of the dance floor. I had forgotten how much I loved to dance. I’m terrible at it, but you can be terrible at something and love it. Just ask William Hung from “American Idol.”

In that moment, I heard the voice of a motivational mentor named Sean Stephenson pop up in my head. “Picture the worst case scenario and watch it play out,” he said.
So I began. I pictured rolling onto the dance floor and running over the new bride. She then falls into the groom. The groom flies right into one of the caterers who knocks the cake up in the air. Finally, the cake soars into the DJ who now looks like a very disturbed version of Snow White. Among the chaos I took note of something interesting. My whole family, especially Anna and Jacob (the bride and groom), was laughing hysterically. I thought, if this is the worst-case scenario, then I’m about to have one hell of a time. Sure enough the fear fell away, and I rolled onto the dance floor. Luckily no one got run over, and I wound up having a blast.

The day I came back from the wedding, the side effects of the rehabilitation began to show. My leg grew stronger and my knee more comfortable. With a little ingenuity and a lot of miracle, I rose to the occasion and found my feet once again. Call it coincidence. Call it a medical triumph if you must, but I might like to call it a graduation gift. You see, I don’t believe I was meant to rise until I learned that true love must rise first, for others and for yourself — above condition, above ego, even beyond the physical world. I could not stand as a man until I learned how to sit as one, because value comes from the love you give and the love you witness. My cerebral palsy had schooled me and I came out the other side a better human being.

It’s so easy to notice the gift of momentum that we often miss the gift of slowing down. Humility is a kind of tough lover that can get buried beneath the mediocrity of an ordinary life, but luckily, CP makes having a mediocre life impossible for me. I’m grateful my own humility could teach me a valuable lesson thanks to life gone by, true love, family, and an angry pair of pants.

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When I Stopped Ignoring My Disability

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I always tried to live as “normally” as possible, without having to make the extra time, other than what was necessary, for my disability. I mean, why would I make things easier on myself if it wasn’t quick? Physiotherapy? Pfft, I don’t need to stretch outside of those appointments. Oh, you want me to actually use my canes instead of crawl? No way. I had the resources, but never fully committed to doing the necessary work for these options to really make any difference in my life.

However, I recently came to a point where I could no longer ignore the fact that yes, I have cerebral palsy, and I needed to stop being so stubborn and ignoring it. My body has taken a bit of a beating — I’ve had elbow pain that has continuously gotten worse over the years, only to recently find out I have bone fragments, probably caused by a fall in my childhood. I’ve noticed that when my Botox injections wear off, I routinely pull my groin muscles when I stand from sitting. And my knees don’t overly love meeting the floor multiple times a day anymore.

I have done a bit of research, and there have not been a lot of studies conducted on aging and cerebral palsy. But, if I am being honest, I do feel the effects of general wear and tear more now than I did 10 years ago. So, I thought I would share a few of the changes I have made in an attempt to really make my life easier on myself:

  • Going to the gym: I got a gym membership a little over a year ago, and try to go a few times a week… I average about once a week, which isn’t very consistent, but still when I go I use certain weight lifting equipment to strengthen and loosen up my muscles. I do notice a difference in how much easier it is to walk after a good workout, and I am now able to use gym equipment I didn’t think I would be able to use before.
  • Physiotherapy: I did approximately five sessions with a physiotherapist recently, where she showed me how to do stretches that help my knees to not turn in anymore and to stretch my ever-so-tight hamstrings and calves. Of course, you get out of it what you put into it, but I have found these exercises to be helpful when I do make the time for them.
  • Occupational Therapy: An OT came to my house, and told me that I a) needed to put a seat and another grab bar in my shower, b) needed to perhaps install a ramp off my back deck, and c) should actually use my walker in the house. When I was younger I would have balked at the thought of using my walker in my house, but let me tell you, it is pretty fantastic being able to use the seat as an on-the-go table for my coffee, and of course, added stability.
  • Using a step stool: I am short in stature, and I hate to admit that I have fallen off a few chairs in my lifetime while trying to balance (not my forte!) and reach the top shelf. Implementing the use of a step stool instead of my much taller husband or a chair to reach the top shelf has been amazingly helpful and given me more independence.
  • And last, but certainly not least, swallowing my pride: I had to accept that I can still be awesome and independent, while also needing assistance. While I may not be “normal” by society’s standards, this is normal for me. I had to embrace the parts of having a disability I didn’t like: having to actually make time for stretching my legs, adapting my home, and admitting that it does affect me. If these simple changes would make my everyday life more manageable, why was I being so stubborn?

These simple “life hacks” have made everyday tasks exponentially better for me to perform, and I would encourage anyone with any disability to reach out to the resources available for assistance wherever possible. Life can get easier if you’re willing to utilize the help being offered to you. You may not look super “cool,” but it’s a lot less embarrassing walking around with a walker than it is eating pavement in the middle of a crowd.

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Thinkstock photo by Wavebreak Media.

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How Cerebral Palsy Affects My Life

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My story begins at birth. I was born three months early, on June 3 at less than one pound. I could not breathe on my own or open my eyes. I was put on a ventilator and transferred to a children’s hospital. I had a 50 percent chance of surviving. The doctors quickly discovered I needed heart surgery. I was too unstable to be taken up to the operating room, one floor away. They did the surgery in my room.

After recovering, the doctors diagnosed me with cerebral palsy and I started receiving treatment. I spent the first three months of my life in the hospital.

The type of cerebral palsy I have is called spastic triplegic cerebral palsy. “Tri’ means three and so for me it affects three of my limbs. The limbs most affected for me are my left arm and leg. My left arm is greatly affected. My right leg is only mildly affected. It affects my balance, motor control, fine motor control and has created muscle tightness. To treat this, I have had physical and occupational therapy since I was a newborn.

Another treatment I receive is Botox. Every three months, I go to a neurologist’s office and receive over a dozen shots between my left arm and leg. The Botox helps to loosen my arm and leg, makes it easier for me to use them and lessens the pain I feel due to my tight muscles. I wear braces on both of my legs. The brace I wear on my left leg is knee high, multi-colored plastic and secured with a thick strap of white Velcro. On my right side, I wear a white insert that sits in my shoe and is molded to the shape of my foot. These braces help my legs and feet to be in the correct alignment and help me to maintain my balance as I walk.

As another one of my treatments, I had an orthopedic surgery when I was twenty years old. This surgery was to realign my femur and tibia on my left side that was pulled out of alignment due to my growth and tight muscles. I also had hamstring lengthening on both of my legs. This surgery loosened my hamstring muscles, which made it so much easier to move my legs and walk. The surgery took five hours. To rehabilitate from it, I was in physical therapy for a year and a half. Since that surgery, my balance has improved tremendously and my alignment is now correct.

Cerebral palsy has affected me greatly. It has affected me physically and emotionally. The physical aspects of my disability will always be there. The emotional aspects were much more difficult for me to deal with. At the age of 7, I began to realize I was different. I realized I did not look like the other kids, with my big, clunky braces, my unstable walk, and my left hand that cannot grip things very well. I used to lay in my bed and cry, because I hated being different and felt I could not relate to any kids and they could not relate to me.

As I got into my teenage years, this feeling and struggle became more prominent and much more difficult to handle. During this time in my life, I began struggling with depression and anxiety. I had no friends and felt completely alone. In my late teenage years I did my first musical, discovered I loved it and began finding friends who love me for me. Musical theatre changed my life and gave me true friends.

This body is the only one I know, but being in this body is challenging at times. I struggle going up and down stairs and up and down curbs; I need a handrail or a person’s hand to safely do those things. I trip over my feet and my balance issues make it impossible for me to catch myself. I have to be cautious and really think before I take steps, walk on uneven surfaces or get up on high chairs.

Due to my tight muscles, I do not have full extension of the left arm and the use of that hand is greatly affected. Sometimes my hand hurts because the muscles are tight and force my fingers into uncomfortable positions. I cannot write, type or grip things very well with my left hand. Due to the tight muscles in my left arm, I have developed a bone contracture. I can no longer fully extend my elbow without pain. The only way to fix that is through surgery, but because it is not interning with my independence, I will not be undergoing that surgery at this time.

I also have a learning disability, which makes school a challenge for me. It causes me to learn things at a slower pace, need more repetition and take longer to complete assignments and tests. Due to the learning challenges I face in school, I did not graduate with my peers. After a lot of help from an adult basic education program, a tutor, family and friends, I graduated in December of 2015 with my high school equivalency diploma. In January of this year, I began my next academic journey, which is to get my Associates of Arts degree at Meremac. I hope to go on the University of Missouri — St. Louis to major in Social Work. I hope I can use what I’ve experienced in my life to help others.

Cerebral palsy will forever affect my life and how I go about living it. I have come to realize it is my choice if I let CP define me or if I define myself. I choose to define myself. Sometimes the way my body and brain work frustrate me and I wish to not have the challenges I am faced with every single day of my life. My body does not listen or cooperate with my brain all the time. On the other hand, I am grateful for these challenges because I feel having cerebral palsy has shaped me into the person I am and given me a unique perspective on the world.

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When People Suggest My Kids Are Independent Because of My Disability

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Parenting isn’t easy. Parenting with a disability can be even harder. Even harder still is overcoming the preconceived notions of “disabled” parenting.

This past weekend, I was able to visit with a friend and catch up over a meal. At one point, we touched upon how independent my boys are. My friend says it’s because “they need to be” due to my disability. I know she didn’t mean to hurt me, but if I’m honest with myself, it did – her words stung. I don’t like to believe that my having cerebral palsy has affected their childhood in any way. But has it? Perhaps.

 

From a young age, my boys were able to dress themselves, brush their teeth and hair and fix their own breakfast. They could get themselves ready to go out the door without any parental intervention. Was it because I had a disability? No. It was because I wanted to raise independent young men who would thrive.

My boys are independent by design. However, I do believe my disability has slowed us down as a family a bit – it became really apparent in the last six months. In July of 2016, I had major surgery SDR in St. Louis under the care of Dr. Park. My recover road was unknown. So, I made arrangements for my parents to take my kiddos for six weeks. My boys had an absolute blast with my parents and other friends and family who offered to take them to do various activities.

My recovery was going great too! I was so relieved I could walk, run, balance and play with my kiddos again by the time the school year rolled around. But, I’d planned to have an orthopedic surgery around Thanksgiving – bilateral PERCS heel cord lengthening. It was supposed to be easy compared to the first surgery. While I am making great strides and doing well, six months later, I’m still slowing my family down noticeably.

black and white photo of a woman playing outside with her son

For the first time in my adult life, my cerebral palsy is having a palpable affect on our family. We haven’t gone on long walks, to the theme park, to farmers’ markets or on bike rides per our usual – and I miss it. My kids miss it. But, it’s getting better. Last weekend, it was in the 90s here in Chicago and we went to the beach. Was I running around in the sand with them? No. But we did have fun together, and we made the most of it.

Because of my cerebral palsy, I feel friends and strangers alike assert that my two boys are so independent. People tend to think that because I have cerebral palsy, I need my children to be independent. Do I? Perhaps at the moment. However, I don’t know that I would parent differently if I were fully able-bodied. Would people feel the need to comment on my boys’ independence if I were able-bodied?

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Thinkstock photo via Guasor.

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