dis(abled)

Sometimes my disability frustrates me. Sometimes I am not as optimistic as I claim to be. Sometimes I wish it would disappear.

I don’t always feel this way. I don’t usually wish I didn’t have CP or count myself unlucky because of it. A lot of time I don’t give it much thought at all. And when I do I am able to see the benefits of it instead of the downfalls. But every once in a while, I just wish it would go away.

The past week has been a hard one. Hard to stand up, hard to sit down, hard to sleep. Hard to carry the baby, change his diaper, give him a bath. Hard to get the dishes done, or the laundry, sweep the floor. Just the thought of getting off the couch is overwhelming sometimes. Not because I’d rather sit and watch TV, but because I know it’s going to hurt more if I get up. And while most everyone would think “Okay, so just sit down and relax.” I can’t. I don’t know how. Sitting on the couch watching TV is a waste of time to me. I’d rather be living my life than just watching someone else live theirs.

I want to have an impact on the world, but sometimes I wonder how I am going to do that stuck on the couch. I don’t want to sit and relax, I want to hike mountains, run marathons, build a house with Habitat For Humanity. I’m tired of offering to help with something, and then ‘warning’ them of my physical limitations. I just want to do what I want to do, and not have to think about whether I have the ability to do it.

And for the times I really do want to just sit down because it hurts too much, usually I can’t. There’s a diaper to change or a baby to chase or dinner to make.

Sometimes it makes me bratty. Sunday, I was a brat all day and I knew it. But I couldn’t change it. I took my wheelchair into church, because we were supposed to help greet and hand out bulletins. We were late getting there (because of my pain), so they already had it covered. I was frustrated that we were late (again) and missed out on helping because of my disability.

In the service, the baby started fussing. I realized that we forgot to check him into the computer for childcare when we arrived, so my husband couldn’t just go drop him off at the nursery. The baby needed to be checked in first, but Sal didn’t know how to do it. I instantly got irritated with him for not knowing how to do it. This meant I had to do it. The reason I didn’t want to have to do it? Pain. I can’t hold a baby and wheel my chair. So I had to get up and carry him. Trying to stand up, I stumbled on the footrests of my chair, and almost fell. We were sitting near the front, so I felt like everyone saw. I needed the childcare card on the key ring, so I asked Sal for the keys. When he asked “What for?” I snapped “Just give them to me.” Because I wanted to do things quickly and not have a conversation about keys while people were trying to hear the sermon. In hindsight, it wasn’t very WWJD of me.

So I took the baby and rushed out to the foyer. At the check-in computer, it would only give me the option to check out, not check in. I thought maybe if there’s someone in the nursery that knows me well, I can leave him anyway. Buuut then I realized I left the diaper bag, with his bottle, in the sanctuary, all the way at the front. I was not about to walk all that way past all those people and back with a crying baby. I looked at the keys in my hand and decided I’d just take him to the van and nurse him. The back seat has tinted windows and screens to block the sun, so nobody can see in. I hoped that Sal would notice I left the diaper bag and come to my rescue, but he didn’t. Oh well, I needed a time out anyway.

When we were finally done, we went back inside, but everyone was coming out because the sermon was over. Sal came pushing my chair. I sat in it, and we tried to make our way through the crowd to find my daughter. He asked me a question, and when I answered, he didn’t hear me (a common occurrence when I’m in my chair). Someone else heard me and they said “What?”, so I told them that I was talking to Sal, but they didn’t hear me clearly and said “What?” again. Frustrated that nobody can hear me because I’m so far down and there are a lot of people around, I turn around to answer Sal. He had a Soda in his hand and his hand was over my sweater, so when I jerked around, his hand slipped and the soda splashed. He made a loud smacking sound with his mouth, indicating he was irritated. That hurt my feelings (again, in hindsight, he was irritated that the soda spilled, not necessarily with me). I felt like “Well, I don’t wanna be in this stupid chair where nobody can hear me, but I have to be.” So I got out of the chair and walked.

On Tuesday we stopped at the store to pick up a few things. I wanted to take my wheelchair into the store, but the baby was asleep, so we needed the stroller, which meant I would need to push the cart. For the first time, I decided to use one of the motorized scooters the store offers. That way I could sit down, and there’s a basket on the front for the items we need. I’d never used one before, because I’m always afraid I’m going to run someone over or knock down a shelf, but now I had no choice.

I was able to handle it ok without running in to anything, but all through the store I kept getting head shakes and eye rolls. I already knew why; in fact I kind of anticipated it. People see me, young and thin, and think I have no business being on that thing. That I’m just messing around, depriving some poor old lady who actually needs it. Same reason I get dirty looks in the handicap parking space. The fact is if I were 77 instead of 27, or if I were 50 pounds heavier, people would think I had the ‘right’ to use the motor cart. But I don’t ‘look’ like I need it. And kids these days just don’t respect anything.

As one gentleman stood there staring with his hands on his hips, I thought “Say something. I dare you.” Again, admittedly not the attitude I should have had. Sometimes I just get fed up. Well trust me sir, I’d rather be walking around just like you.

We went to the store again yesterday to pick up some supplies for a Relay fundraiser I’m working on. I used my wheelchair. And again when we went to the pharmacy. And you know something? I wasn’t in a whole lot of pain last night. I was able to sit on a stool and make dinner without having a breakdown about not being able to make dinner (something that’s happened every night this week. And at least once a week every week.) So it looks like the simple solution is to start using my chair when I go to the store or do other things that require a lot of walking, even if I don’t feel like I need to. I don’t like it, but it’s the smart thing to do. It will help me function better when I have to be on my feet.

So there you have it. I don’t always see my disability as a blessing in disguise. Sometimes I wish someone else had gotten it instead of me. Someone that doesn’t mind sitting on the couch all day. But I have to remember that nobody has it perfect, and we all have problems we have to contend with. This is mine, and it’s not as bad as it could be. Something good will come out of it. I can still have an effect on the world, even if I have to do it from my couch.

Sometimes it's difficult, but this face makes it totally worth it.

Sometimes it’s difficult, but this face makes it totally worth it.

Cerebral Palsy Awareness: Treatment

My final post on CP Awareness, for now. Enjoy! 🙂

When most people think of treatment, they think of doctors and hospitals and needles and miserable, ongoing physical therapy sessions. That’s not how I remember it.

My earliest memory as far as treatment, I was four or five years old. We were at Shriner’s Hospital, where we spent a lot of time when I was growing up. But it wasn’t what you’d think. Not what you see in the movies. I wasn’t miserable, not at all. It was fun! The nurses were nice and talked to you at your level. There was a rec room and lots of other kids to talk to and play with. And none of those kids thought you were ‘weird’.
This particular time, we were out in the yard of the hospital, and there were clowns and games, and the WSU football team was there. I only remember pieces of it. But I remember it was fun. I remember someone from the local newspaper was there and they took my picture.
Shriners2

I’ve had surgery three different times, totaling 10 incisions. Surgery is performed on children with CP that have severe muscle contracture. They cut the shortest fibers of the muscle, to lengthen it. For me, and many other patients, this meant my heels touching the ground instead of walking on my toes, being able to (almost) straighten my legs, and being able to stand up straight, instead of being bent at the hip. To reduce pain and sensitivity, sometimes causing numbness, they might also cut the nerve.

The first time I had surgery I was two years old. It was to lengthen the Achilles tendons on both legs. I don’t remember it, but I’ve seen pictures of the bulky, plaster casts that went all the way up my legs, as well as the big blue foam bumpers that went around them to keep the casts from knocking together and breaking.

My casts and foam bumpers at two year old. My grandma is holding me :)

My casts and foam bumpers at two year old. My grandma is holding me 🙂

I remember the trips to Shriner’s, about two hours away, to assess treatment. Sometimes it was just me and my mom, sometimes my little brothers came too. I loved the little road trips. I’d ride in the front seat with my pillow and blanket and 20 of my favorite stuffed animals; mom would stock the car with donuts and snacks. When we got there, the doctors would pull my legs up and down and watch me walk and test my reflexes. It was all to evaluate the locations and extent of my impairment, in order to plan treatment options. When they were done, we’d go out to the swing set or to the rec room and play games. Then it was back home.

The second time I had surgery I was five. It was during kindergarten, and I remember returning to school in a wheelchair. Again, it was on both Achilles tendons, and the casts went all the way up my legs. I remember all the kids being fascinated with the wheelchair, and that they could write on the casts. On one occasion, my teacher, Mrs. Herald, who was probably in her 50’s, wanted all the kids to lay on the floor and read. She told me I could sit at my desk, but I wanted to lay on the floor with all the other kids. Instead of brushing me off and telling me I couldn’t, she picked me up out of my wheelchair herself and laid me on my stomach on the floor. The whole class laughed at the sight of her carrying me, but I was glad at the opportunity to do the same thing the other kids were doing.

The last surgery I had, I was ten. They did it during the summer, to minimize the amount of school I would miss for recovery time. This surgery was more extensive; they were lengthening my left Achilles, hamstrings on both legs, and my left hip flexor. In the hospital, I had a roommate that was about my age. Her name was Savannah, and she was having surgery for club foot. I had never heard of that before, and she tried to explain it to me, but I didn’t really understand. It was fun to have another girl my age there to talk to and play games with. Someone who could really relate.

After we went home, having to recover during the summer was hard for me. I loved to swim and ride my scooter and play baseball with my brothers during the summer – none of which I could do with the casts and splints and stiches. I remember getting my feelings hurt when my family decided to go to the local indoor pool to swim, even though I’d have to sit there and read. Didn’t they know how much I loved swimming?? Nights were long; I had to sleep in the splints, which meant keeping them straight all night long. The left leg would hurt under my knee from the stretch of my hamstrings. I used to push the splint down carefully, just enough to bend my knee a little (Shhh! Don’t tell my mom!). But mom stocked me up with books and puzzles and things I could do until I was recovered, and even bought me a little Vtech lap top so I could play games. During my recovery we took a trip to Seattle to visit my grandparents, and we all stayed at a resort. There were lots of things I could do in my wheelchair, like play games in the rec room or mini golf. There was a beautiful pool, and I was really disappointed that I couldn’t swim in it. So my mom waited until it was getting dark and the pool was empty. She got in and told me to sit down at the edge. Then I laid on her hands, and she floated me around on my back in the water. I’ll always remember how cool I thought my mom was for doing that. I’ll also remember the half cantaloupe filled with ice cream she gave me for breakfast the next day (that she didn’t give my brothers).

I started school that year still in casts, splints, and a wheelchair. It was a little difficult, but accommodations were made, and my teacher was really nice. At home, my best friends and I decided to put on a neighborhood talent show. We liked to do dance routines (and the Macarena  ) and put on shows. I didn’t have to have the splints on anymore, and I was able to walk in the cast and practice routines. We picked Saturday the 23rd, the day after I got my cast removed, as a celebration for cast removal. To my surprise, it was a lot harder to walk and jump with the cast off than with the cast on. My ankle was really weak. The support of the cast made it easy, but without the support, I almost fell every time I took a step. But we had spread fliers around the neighborhood and knocked on doors, and there were a lot of adults coming to watch and a lot of kids coming to participate, so we couldn’t change the date now. It was difficult, and probably pretty obvious that I was having trouble, but we did it. And with the $5.00 we got from charging admission, we rented a movie loaded up on candy.

Therapy was another major form of treatment for my CP. I hear people talk about how they hated the painful therapy sessions, but that’s not how I felt about it at all. During school I had therapy once a week. The physical therapist would come and get me out of class (yesss!) for a half hour. The physical therapist I had during elementary school, Bridgette, really impacted my life. She turned the stretching and balance exercises into games, and more importantly, she never let me say “I can’t”. She would prove that I could, if I didn’t give up. Today, when I hear myself saying I can’t, I hear her voice reminding me not to say ‘can’t’. That I can, but I have to keep trying; find another way. She ended up starting her own children’s therapy business. Through that I got to do a lot of things that ‘other’ kids got to do, like dance and Tae Kwan Do. She ended up moving to Seattle, and we lost contact, but if I could see her today, I would thank her.

I also did horseback riding, known as Hippotherapy, and swimming therapy. Hippotherapy benefits because of the effect the horse’s movement has on the person. Swimming therapy’s main benefit is that the buoyancy of the water makes the person almost weightless, so it is easier to move and exercise without putting harsh strain on the bones, joints, and muscles.

Another form of my treatment was leg braces, or AFO’s. I think I was about four years old the first time I got them. I hated them. One of my best friends has Spina Bifida, and she loves her braces. And I know of others that love their braces, but I have always hated them. I remember them feeling uncomfortable and restrictive, and that they always pinched my legs when I sat in the plastic chairs at school. Not to mention how ugly I thought they were. I felt like I looked like I had robot legs. Especially with the giant shoes I had to wear to fit over them. I always tried to get out of wearing them, and sometimes my mom caved and I didn’t have to. The last time I remember having them as a kid I was nine or ten. My poor mom; I probably complained so much that she just didn’t push it anymore.

For children, there are many treatment options, including the ones I talked about above. There is also speech therapy, for children whose CP affects their ability to speak, eat, or swallow. Muscle relaxers are prescribed to patients who have severely contracted muscles. Occupational therapy, similar to physical therapy, is mostly for those that have trouble using their arms and hands. There are also newer treatments, like Botox injections to ease contracture on a longer term, and new discoveries with cord blood and stem cell treatments that are actually making some symptoms disappear! Unfortunately for me, these new discoveries have so far only worked on young children.

I moved to California when I was 13, and there wasn’t any treatment after that. I tried to seek out treatment as an adult when I turned 18, but nobody seemed to know what to do with me. A big issue I have encountered, and a lot of why I write this blog, is that there is not enough information or treatment options for adults with CP. Once you’re 18, Shriners (a children’s hospital) doesn’t help you, and doctors don’t know what to do with you. Research online only finds information on ‘your child with CP’. My problem is this: Children with CP turn into adults with CP. It doesn’t go way on your 18th birthday, but your options for treatment seem to. Why isn’t there more information, knowledge, and options for us?

Soon after my 18th birthday, I went to an orthopedic. He measured the tightness in my legs and said “Yeah, you have contracted muscles.” When I asked him if there was anything we could do about my obviously in-turned knee, a brace or something, he said he didn’t know what I was talking about. Other orthopedics wouldn’t even see me; they said something had to be broken or sprained for them to see me.
With no insurance, I gave up. When my pain and weakness got pretty severe while I was working at the bank, where I had insurance, it was time to try again. My regular doctor helped with some medications and a referral for physical therapy. The therapists were nice and they worked hard to help, but even they didn’t seem to know much about CP. It was my idea to get a wheelchair when nothing seemed to really be working, and the wheelchair helps, but I still wonder if there’s a way I wouldn’t have to use one. If maybe had treatment continued, I’d have had another surgery. If maybe I could make up for it now.

My doctor also referred me to a therapy and CP specialist about 4 hours away (at a children’s therapy center) who agreed to see me, even though they don’t treat adults. She told me I needed AFO’s, so she fitted me for them and had them made. Honestly, I hate them as much as I always did. I thought as an adult I wouldn’t, but I do. They’re still restrictive and uncomfortable, and my feet hurt around the middle of the day. When I wear them, even for long periods, I don’t feel much of a difference. Admittedly, I don’t wear them as often as I should.

Now, on disability, I don’t have any medical insurance. I’m not eligible for Medicare until I’ve been on disability for 24 months. So I pay out of pocket for doctor visits and monthly prescriptions. I hear Medicare doesn’t cover much anyway.

One of my goals, friends, is to change the issue of finding treatment options for adults. My friend with Spina Bifida has encountered the same problem. CP and SB seem to be considered childhood diseases, but they are life long. We want more than just “Here’s a wheelchair and some pills; good luck.”

I would like to see more research being done and more solutions being implemented. Is it silly of us to expect more? To my readers with CP and other disabilities, have you had the same problem, or what treatment solutions have worked for you?

Shriners1

Cerebral Palsy Awareness: Complications and Associated Conditions

“Cerebral Palsy doesn’t get worse.” That’s what I was told when I was a kid asking questions. Technically, that it true, but as I have discovered, in some ways, things do get worse.

As I discussed in my first CP Awareness post, Cerebral Palsy, by definition, is brain damage. The complications and associated conditions are the tangible evidence of the brain damage. A person with Cerebral Palsy might have all or only some of these. I, thankfully, have only a few. But I am finding that the older I get, the more ‘complicated’ it gets. According to mayoclinic.com, these are some complications of Cerebral Palsy:

• “Contracture. Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity). Contracture can inhibit bone growth, cause bones to bend, and result in joint deformities, dislocation or partial dislocation.”

This is a complication I have. Despite surgeries to lengthen my muscles, the spasticity in my legs is very noticeable. My hip flexer actually pops out, and my left knee is permanently twisted inward. When I stand, my knee is not in the center, but to the right of my leg. It wasn’t always that way. That is from the tendons being too tight while I grew. Growing pulled at my tendons like resistance bands, forcing my bones to accommodate.

• “Depression. Social isolation and the challenges of coping with disabilities can contribute to depression.”

I don’t think I’ve ever been ‘clinically depressed’, but there have been times that I’ve been worn out, physically and emotionally; as well as feeling isolated. Looking back, I’ve noticed that during those times there was a drop in school or work attendance and performance.

• “Premature aging. People with cerebral palsy often experience medical conditions in middle age that are more commonly associated with older age. Such premature aging can result from significant stress on the body and poorly developed heart, lungs or other organs that may not function at a typical capacity.”

I haven’t reached middle age yet, but my CP is mild, and I don’t have a reason to think any of my organs are ‘poorly developed’. I do have a little concern about the fact that I take medicine on a regular basis, and how it might affect my body in the long run.

• “Post-impairment syndrome. This condition is characterized by pain, fatigue and weakness resulting from stresses on the body, movements to compensate for disabilities and the significant exertion of energy needed for everyday functions.”

I couldn’t have described my everyday physical state any better. As I mentioned, it wasn’t always this way, but it has gotten better since I ‘dropped out of the rat race’. I thank God for that, and I’m also praying that I don’t lose more mobility as time goes by. But I know that if I am not working, it is because God has something better for me. There are countless mothers that wish they could stay home with their kids, and I get to do it. I do not take that for granted. I also know that that is not my only purpose, and I want to help as many people as I can.

• “Osteoarthritis. Pressure on joints or abnormal alignment of joints from muscle spasticity may result in the early development of painful degenerative bone disease (osteoarthritis).

I think I might have this in my hip joints. That is the joint that connects your femur to your pelvic bone. I just read that it’s usually treated by hip replacement, which kinda freaks me out.

Associated conditions are a little different from complications in that they are usually directly from the brain damage (issues from the beginning), where complications come down the road (side effects from the body wearing out, so to speak). Here are some of the associated conditions of CP:

Impaired vision and/or hearing

Malnutrition and/or failure to thrive– Difficulty eating and swallowing because of low muscle control can cause malnutrition, growth, and development problems.

Yeah… let’s just say I’ve never had a problem with malnutrition…

Although, my mom told me that when the doctors hooked me up to those wires to help them see how my muscles worked, they told her that I burn two or three times the amount of calories as others doing regular tasks, like walking across the room. This is because it takes twice the effort.

Mental Impairment

  Incontinence – This would be due to lack of muscle control

Speech and/or drooling problems – Also due to lack of muscle control

• Epilepsy

Dyslexia and/or ADD

So my problems from CP are mobility related, and I don’t have any associated conditions. I hope that I don’t lose any more mobility. I’m still trying to find the balance between living life to the fullest now, and ‘saving my mobility’ for later. One of my doctors told me that I should stay seated and use my chair as much as I can now, so that I can put off the loss of mobility. I find that very hard to do. Especially with two kids, but also because I don’t really like using my wheelchair. Don’t get me wrong – I’m grateful for it when I really need it, but I find myself pushing my limits to stay out of it. Everyone tells me I’m too independent, and maybe that’s true…

But while I search for the balance and believe for the best, I hope I teach my kids not to put limitations on themselves or others. That it’s not your circumstance that matters, it’s your attitude. To not be afraid of the ‘what-ifs’.

You can be Supergirl, even with a broken arm.

You can be Supergirl, even with a broken arm.

Catwalk in a Wheelchair

I’m interrupting my CP Awareness series to bring you some breaking news: Yesterday I got to model in my wheelchair.

As some of you know, my uncle was diagnosed with cancer last January. To show our support and help fight cancer, our family has participated in Relay For Life the past couple years. Macy’s does a Mother’s Day brunch and fashion show to support Relay For Life. They use volunteer Relayers to model some of their new clothing. My daughter loves to be in the spot light, so she was super excited to volunteer. They said they wanted mother/daughter teams, and she really wanted me to do it with her, but I wasn’t so excited. Let’s just say she doesn’t get her love of the spotlight from me. I wasn’t so sure, but I didn’t want to disappoint her. A million things ran through my head, the first one being a clear vision of me tripping and falling in front of a restaurant full of people. So I thought, what if I modeled in a wheelchair? I wouldn’t be as nervous, there would be no falling, and I wouldn’t have to worry about how long of a ‘runway’ it was or whether there would be chairs behind the curtains or in the dressing room. I asked my aunt about it and got into contact with the people in charge of the event. Everyone liked the idea, so reluctantly, I went for it. We had a fitting at Macy’s last Friday, and the brunch and fashion show was yesterday at a local restaurant.

There were a few teams of models, including my aunt, cousin, and beautiful 7 month old niece, and the cutest, nicest, spunkiest little elderly lady I’ve ever met. I was pretty nervous up until the first couple teams went, and then I started to calm down. The weird thing is, in situations like this, it’s not the strangers that make me nervous, it’s the people I know. Am I alone in that?  I was pretty sure my mom was gonna start cheering and clapping (Love you mom!), but she didn’t. Somebody did do an “awww”. I hope they were doing it for my 8 year old… but I think they were doing it for my wheelchair.
The ‘runway’ wasn’t too long, but there were no chairs backstage. The fitting room was the bathroom, so there were no chairs there either. I wouldn’t have been able to stand that long, and I can’t get dressed standing up, so I’m really glad I did it in my wheelchair.
It was fun though, and Romi is already making plans for next year’s cat walk 🙂

Here are some highlights:

Romi and me before the show. Rock n Roll!

Romi and me before the show. Rock n Roll!

Macy's outfit #1. Just keep smiling!

Macy’s outfit #1. Just keep smiling!

 

Macy's outfit #2

Macy’s outfit #2

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic...

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic…

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show :)

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show 🙂

I could never be a real model; I like my chocolate too much. But was a lot of fun, for a good cause; and everyone, especially the Macy’s ladies, was really nice. The clothes I modeled were pretty, but honestly… I still shop in the juniors department lol. Maybe if I still worked at the bank…

Cerebral Palsy Awareness: Symptoms and Diagnosis

Even though my cerebral palsy was most likely developed in the womb, I wasn’t diagnosed until I was two years old. The floppy and hypertonic muscles and movements of babies with cerebral palsy are so similar to that of any other newborn that unless it is a severe case, it isn’t noticed until months down the road, when developmental milestones are missed, or something seems ‘not quite right’. Even then, doctors want to rule out other possibilities before making a diagnosis.

After interviewing my parents, this is what I learned about how they found out I had CP:

I wasn’t crawling until  about 10 months, but when I ‘crawled’ I just pulled myself with my arms and upper body, and my legs dragged behind.

IMG953060

Since some babies learn to crawl this way, my mom didn’t think much of it. My dad wondered if there was a problem, because the muscles in my legs always seemed tight and contracted, and my feet and toes were always pointed down.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

My mom noticed had more trouble with my left side.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look 'lopsided'.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look ‘lopsided’.

When I learned to stand I always stood on my toes. When I learned to walk a long time after, I walked on my toes. Since my mom walked on her toes when she was young, she didn’t think much of that either. But when it seemed to be getting worse with time instead of better, they became concerned.

It should be noted that I have a mild case of CP. A lot of babies’ symptoms are much more obvious. Still, unless the baby has a severe case, it probably won’t be noticed until the baby starts trying (or should be trying) to get around on its own.

One of the tell-tale symptoms is a failure to reach developmental milestones, like pushing up, crawling, and walking. Other symptoms can be:

  • Continuing primitive (newborn) reflexes after 6 months of age [americanpregnancy.org]
  • Muscles that are abnormally stiff or floppy
  • Lack of coordination
  • Tremors or involuntary movements
  • Writhing movements
  • Preference and better use of one side of the body
  • Drooling (beyond appropriate age)
  • Trouble with sucking, eating, and swallowing
  • Speech difficulties

[mayoclinic.com]

The symptoms depend on the type of CP, which depends on the part of the brain that was damaged. The severity of the symptoms depends on the extent of brain damage. Most of these symptoms would be difficult to see in a baby, which is why CP is normally not detected until between 1 and 3 years of age.

In my case, a diagnosis was a long, winding road, but here’s the short version:

My mom remembers taking my grandma to her foot doctor when I was a little over a year old. The doctor played with me a little and then continued with the appointment. When my mom put me on the floor to crawl around, the doctor noticed I didn’t crawl quite right. With permission, she picked me up and tugged on my legs a little. She mentioned to my mom that she might want to take me to a doctor. The first doctor thought it was an orthopedic problem and tried correcting it with casts. My family saw that it wasn’t helping, and they contacted Shriners Hospital. The Shriners doctors started by coming to my home to measure my legs and flexibility. Following that, they did cat scans, reflex testing and other tests. They hooked me up to electronic impulse wires; wires that read electronic impulses from my brain and muscles, and analyzed them with a computer. My mom remembers that they hooked me up to these wires and had me walk down a long, black mat. On the computer all you could see was my skeleton walking. Finally, at two and a half years old, they had a diagnosis.

That, of course, was 25 years ago. Today, maybe a diagnosis would come sooner. I could be wrong, but I think doctors now are more aware of CP than they were then. And they might not use all the same methods. My mom doesn’t remember exactly all the tests and scans they did. I don’t know how closely growth milestones were monitored back then, or whether a pediatrician today would recognize the subtle signs of my CP during a routine checkup. I don’t know if they still use the electronic impulse wires, but I would love to see that! I do know that they use MRI’s and CT scans, as well as flexibility and reflex testing to help in making a diagnosis.

Along with my diagnosis of CP, my mom was told that I would never be able to run or jump or ride a bike. But she and my family didn’t just take the doctors’ words regarding my future and my abilities. They let me decide. And they helped me achieve my full potential. So when you or family member or friend receives a diagnosis, and the doctor tells you what to expect, respectfully thank them, and then do everything you can to overcome the odds. Let God decide what you are capable of.

Jump rope was one of my favorite things to do as a kid... despite the doctors saying I would never have the capability.

Jump rope was one of my favorite things to do as a kid… despite the doctors saying I would never have the capability.