Tuesday, February 05, 2008

For parents: my cerebral palsy

I have decided to share a little about my cerebral palsy because I see that parents of young children with CP have so many questions. I had been reluctant to share too much personal information, because I don't want it to detract from what's really important - namely, that people are people, disability is part of human diversity, and that I think loving your child is the most important thing you can do as a parent. Working to reduce the societal barriers to inclusion and respect comes second. I know that the parents whose blogs I check out now and then get that. So, this is for you parents. I hope it helps in some way.

To start - my childhood was a happy one. The fact that kids with disabilities have happy childhoods should not be a surprise, but to some it may be. Here's a study confirming that point.

I have spastic and athetoid quadriplegic cerebral palsy. Over the years, I have met many other people with CP, and one thing is for sure - cerebral palsy is different in each one of us. I have high tone and spasms in my legs and arms, and low tone in my trunk and neck, and athetosis in my arms and hands.

With CP, life is full of complicated decisions. I've learned that every decision has a positive and negative. Every choice has a positive consequence and a negative consequence. Sometimes the consequences are short term, sometimes they are long term. And, often, when making a choice, you just don't know what the consequences will turn out to be. As I now weigh decisions on my class schedule, exercises, rest, and fun activities that challenge me physically, I understand more how difficult it was for my parents to make decisions for me when I was younger.

Therapies:
As a child I had physical therapy, occupational therapy, and speech therapy. Mainly, I have had a lot of physical therapy. My physical therapists worked out of Children's Memorial Hospital (and are now at La Rabida Hospital). Their philosophy entails an emphasis on prone work to strengthen core and trunk muscles. I still do physical therapy, and I am still making progress. Yes, you heard that right - at 22 years of age, I am continuing to make progress. While I have worked many hours with professionals, my parents were the key people. A great deal of work was done outside of “therapy time” – work with my parents and also on my own. When I was younger, my parents had exercises and stretches that they did with me as part of a routine - like each time they changed my diaper they would stretch my hips and hamstrings. The biggest part of my work was spending huge amounts of time prone (lying on my stomach). "Prone lifts" - reaching for toys, playing with blocks, pointing to pictures in books, lying prone in my stroller were just a normal part of my day. When I was younger, I spent a great deal of time on my stomach, and had sitting time and standing time as much smaller parts of the day. I played prone with my cars and trucks and played prone in the swimming pool; it was just part of my life. For a time, I even went to school prone. When I played while lying prone, I didn't prone in the strollerknow I was strengthening my back and trunk muscles and gaining head control. At my house, it's just how we did things. I never had walkers or gait trainers because my therapists felt that I would use my tone to operate those things and that would limit my abilities more than help them. My parents carried me around a lot, brought things over to me, and I explored the world on my stomach. I did have a stander when I was younger.

Today, I’m most comfortable lying on the carpet where I can roll from my back to my stomach and change position on my own. And now, I take time throughout my day to do prone lifts on my own. While I do not like doing the lifts, I notice that when I take time off from them, my trunk and gluteal muscles get much weaker, and I have more trouble sitting and standing and also more pain in my back and legs. When I return to doing the lifts, my muscles get stronger again.

I wish I didn’t have to do so much bodywork – I think my parents and therapists were smart to mesh as much of it as possible into our daily life. But, I really got sick of the formal therapy work. I hated (and still don't like) the time it takes in my life, but the benefits of working on my body are so great. I used to think that I was going to walk - therapists and doctors told me that it was possible. But, it didn't happen. I've realized though that the primary benefit of taking care of my body is not about walking. Walking isn't that important. The real benefits are in helping my body do the best it can for me. With a stronger body and less pain, I can travel (like family vacations here and here and my trip with MIUSA to Costa Rica); go to college; sing; blog; and just do more and have more fun. Without the work, my hips and back would be pulled out of alignment by my spasticity, and that hurts. In the long run, doing therapy takes less time and is less hassle than the alternatives of pain, decreased function, and multiple surgeries. Because of my work, I have good head control and I can sit in my wheelchair for several hours at a time. Those two things are really important to my functioning. Also, because of my work, I can do a standing transfer with the assistance of one (knowledgeable) assistant. This is really important, because without a standing transfer, I would have to be lifted from one place to another - say on and off the toilet. My mother is no longer able to lift me, and without a mechanical lift, my options to go places would be very limited without a standing transfer. Now, my mother (or someone else who is trained) can help me transfer. While I'd rather be totally independent, this assisted transfer is extremely helpful to my daily life. I know that without all my work, I would not be able to do that.

AFOs/Casts/ splints
AFO’s – I have had AFO’s all my life. If made properly (and that usually takes quite a few annoying, time consuming adjustments), I don’t find them uncomfortable. I think it was harder when I was growing than it is now. I do find that the AFO’s get very cold, so I like to have a warmer pad inside the AFO on cold days. (Cold feet increase my spasms.)

For most of my life, I slept in a night body cast for several hours each night. This kept my trunk straight, my hips intact, and my legs abducted (apart). As a young child, I didn’t mind it; as an older child and teen, I hated it because it was very uncomfortable to sleep in that position since my spasticity was so great while I was growing. I could have tolerated it when awake, but sleeping was another story. But, it met the important physical goals that it was designed for; my scoliosis is minimal and my hip sockets are well formed. I have mixed feelings about using the cast.

Splints – I do have a splint that keeps my legs separated that I sometimes use during the day now. I don’t mind using that splint, and I feel the benefit of not having my legs cross.

Botox:
I had botox on my hamstrings, and for me, it didn’t help at all.

Serial casting:
I had serial casting twice. The first time was when I was about 8, and it was successful in lengthening my Achilles Tendon. The casts didn’t hurt; it was just annoying to wear them and to have weekly appointments for months on end.
The second time I had serial casting, I was 16 years old and I had been having pain in my feet with standing. This time the casts helped a bit, but they hurt a lot. My bones had shifted over the years, and casting could only address the muscle and tendon issues. After the casting, I had bone surgery on both feet.

Surgeries:
My experience with surgery (my own and my friends) is that it’s ALWAYS harder than what the surgeon says. Based on my personal experience and that of my friends and acquaintances, I would work and do work very hard to avoid a bone surgery.

I had muscle lengthening surgery when I was 6 years old on my adductor muscles. (These muscles were tight from all the tone pulling my legs into crossing.) Physically, this surgery wasn’t that tough, but I did an intensive physical therapy program afterwards to help me retrain how I used my legs. It all felt time consuming to me, but I know it was very helpful. I made a great deal of progress being able to stand without crossing my legs.

I had my second surgery when I was 16 years old. As I said, my feet were hurting and it was getting hard to put weight on them. This was a major event – rearranging the bones of my feet. It was extremely difficult with long-term pain and an increase in horrible back and leg spasms. I would say it was about a year before the painful spasms of my legs and back reduced back to the pre-surgery level. I went to a pain management clinic for help with the pain, and that was helpful.

Now, I see a major, major benefit of bodywork as avoiding bone surgery – it is so painful, affects the whole body, and takes so much time out of your life. It's mentally very exhausting. (I recall some school aged kids with CP having a major surgery every summer. Yuk!) I would do a lot of bodywork to avoid bone surgery! I've also learned that surgery only straightens out the bone, it doesn't change the CP. So, after the surgery, the CP is still causing the problem that led you to the surgery in the first place.

Also, I wore an eye patch for several months and had 2 surgeries for strabismus (eye muscles).

Respiratory
I had lots of respiratory infections as a baby and young child. They were very debilitating. This changed after about age 7 – I worked with Mary Massery on respiratory exercises. She taught me to take a deep breath, hold it, and then cough. My parents also learned some respiratory physical therapy techniques that were helpful in preventing a cold from turning into a full blown respiratory illness. I also started singing in a choir about that time. My respiratory problems dramatically decreased as my diaphragm got stronger. Now, I still sing, and I know that that is really helpful to my body. Plus, unlike other bodywork, it's fun!

GI
CP affects my GI tract big time. I’ve had trouble with weight gain, severe reflux and vomiting, and constipation. There have been no “magic pills” to solve these problems, but with some effort they are managed to the point of being livable. The severe reflux is one problem I’d really like to get rid of.

Stamina issues
I tire very easily, both mentally and physically. Sitting well, standing well take a lot of cognitive work. My low stamina is a big frustration for me. I need a lot of rest each day. If I don't get it, I really pay the price with increased pain and tightness.

Tone/Spasticity
For me, the high tone itself is somewhat painful. It's more limiting than painful, because I can't move so well and I don't feel like I have good control over my body when it's tight. The effect of the spasticity on my hips and back can be painful - the constant pull (to cross my legs) on my hip can be painful in my hip. I've found heat to be very helpful in reducing both the spasticity and the discomfort. I like to keep my legs warm. I use little heating inserts in my AFOs, and when I am lying prone, I often have a heating pad across my butt or legs. A warm bath also relaxes the tightness. Being cold and shivering increases the tightness. Positioning my legs in a way that separates them while simultaneously applying heat helps. Also, actively using the spasming muscles helps to decrease the spasms; if I stand well and actively use my gluteal and leg muscles, the spasms decrease. But, that's hard - it takes a lot of cognitive work to get it right.

A problem with pain that can be overlooked is that pain, even mild pain, is distracting. It takes my attention away from focusing fully on something else. And that is sometimes a problem, more so than the actual discomfort of the pain.

Technology
Technology is so very important for kids with cerebral palsy. I cannot handwrite at all, but I can use my computer to send emails, write papers, etc. My Permobil wheelchair lets me change my position on my own - sitting, standing and lying down. Without the Permobil chair, I'd have pressure sores, a lot more pain, and much less function.

School
This is a big issue. I've written a little about my school experiences here and here. Between my sisters and me, we've tried full-time public school, part-time public school, full and part-time private school, and homeschooling. We did different things at different times. My parents came to view the school system as one tool of many in their toolbox. They learned that it wasn't always in my best interest to do things a certain way, just because things had always been done that way. I've found the low expectations and the challenges of finding capable assistants to be the biggest hurdles in the school system. Interestingly, and wonderfully, I am finding college easier to navigate than k - 12.
I think that it is extremely important to not have one's time filled with bodywork and schoolwork and no time for fun. That's part of the tricky balancing act that families have to figure out.

Pursuing strengths
I see it as so very important for kids with CP to pursue their strengths. It is very easy to focus on everything that needs improvement. But, for me, my strengths are what helped me fit in with other kids, what gave me confidence, what gave me fun, and what now may help me to be employed or have fun as an adult. I am so glad that my parents helped me to have singing lessons and choir experiences. I am glad I didn't focus on handwriting in elementary school. It was a good decision to take higher level Spanish classes in highschool and skip some math classes; my strengths are auditory and my learning disability is visual.

Parents/Making decisions
There are things I wish my parents had done differently. For example, I wish I had homeschooled more in elementary school. I think it would have been less stressful to me, and more efficient for my time. I think school took up too much of my time, particularly when the way things were done didn't match my learning needs and simply wasted my energy. I wish my parents had intervened sooner with one of my problem school aides. And, I wonder how life would have been with less therapy time. There were plenty of times that I hated going to therapy.

I am very grateful that my parents were able to go against the culture or the "way things were always done". I am so glad they were strong advocates for me. They tell me that they learned that over time. They didn't start out that way.

I also now appreciate how very difficult decisions for me really were. As I have taken over more and more responsibility for these decisions, I realize that there are not easy answers. My parents did the best they could. And, I have learned from them to not dwell on the mistakes or the things I wish I had done differently, but to keep learning and move on. I think if my parents were wracked with guilt and fear about making mistakes, I'd pick up that attitude also. And that attitude could paralyze future decision making.

This post was a joint effort with my mom. I hope it is helpful to parents. Again, these are my personal experiences; everybody is different. Let me know if you have any other questions.

So, my summary points - love your child, promote strengths, do the best you can with the complicated decisions, think "outside the box", and don't be too hard on yourself.

It's very important that we all work to change society so that those of us with cerebral palsy can be full members. Support the ADA Restoration Act, model inclusive attitudes and advocate for a better world.

UPDATE: My parents and I continue to think of many other things that could be helpful to a family with a young child. Here are a couple more.
-During the years when I rebelled against formal therapy, (in addition to meshing the work into my day like I described above), my parents tried to make therapy fun. I had books read to me or played guessing games or various things to help me "enjoy" the time more. It didn't really work, but it did help. Also, when I was about 4 years old, something that worked was a "reward" for "working hard" in therapy. I got to do an art project that was only done after a session during which I cooperated (so the reward was not based on "what" I did, but just that I gave a reasonable effort). My mom had a stash of paper plates that I decorated with glitter, paint, felt, whatever, and then she put them on display on the wall. Whenever someone came over, they would ask (with some prompting by my parents) about all the art on the wall. I would feel proud of my accomplishments. My parents never wanted to punish me for not cooperating with something that was inherently unpleasant, so they just used rewards or lack of rewards. And, I did get a time out if I would bite the therapist or do something really nasty. ; ) No art project on those days!
But, I do think the best way to work on my body was just having it be part of my day.
-Also, my parents came to learn that no "expert", in health care or education, was more expert than they were. They used "experts" like consultants, weighing what they would say against their own experience with me and against their gut feel. (And, by the way, they didn't get the hang of this until after they were misled a few times.) They also learned to be very creative as they weighed different choices, starting with what their goals were for me and then deciding how to use others' advice.

58 comments:

Laurie said...

This is a wonderful post, Dave. It's a very thoughtful and honest account of life with your CP.

Hope everything's going well!
Love,
Laurie (a sister!)

AZ Chapmen said...

hi david nice post. My name is AZ I have Cp too although it is mild. Come visit to learn more about me.

Penny L. Richards said...

Thanks David. Jake's got CP, but he can't tell me details like this--and some of it seems to apply to his experience too, especially about the effects of being cold/warm, and AFOs being okay as long as they're made right and fit well. Hey, and the botox didn't work for him either, at least not enough to justify a repeat attempt.

qw88nb88 said...

I really enjoyed this post David, from many points of view, including parenting, physical therapy, self-help, et cetera.

I also enjoyed hearing your opinions about PT work from your end of the experience. For one summer, I was a personal assistant for a young man who had some similar problems. He was in his late teens, and his current PT was being very assertive about changing his AFOs and doing various kinds of strengthening exercises to transition him from using a wheelchair or crawling, to using a walker, then walking with crutches and an attendant (me) holding onto his gait belt to help him (when necessary) "fall gently" as he improved his balance. As you noted, doing these kinds of exercises helped [him] gain the strength and balanced needed that allowed him to stand and transfer, which made bathroom trips and a wide variety of other daily events (such as climbing off and on bus steps and seats) much easier. They also improved aerobic efficiency, digestion and other core functions. We loved going to the city pool. He had just had some surgery to loosen his tendons and help correct his foot arch and still required AFOs for standing while he built and rebuilt tissue strength and callous padding, so he could not yet walk barefoot. The pool had a "concrete beach" which provided a slope to roll the pool chair down until we got to a sufficient floating depth. No matter how long the bathing, re-dressing, re-taping on the pads and AFOs took, it was always worth it for the absolute fun and exercise. (I did not care how long it took -- that's what I was there for; he indicated that he found the process tiresome.)

Another good point you make is that any kind of therapeutic exercise is more fun, easier to do, more beneficial, and more likely to be engaged in and maintained if it is combined with daily activities, rather than done strictly as PT or gym exercises. I have to force myself to work out at home or the gym during the winter. Once gardening season starts, I can get in lots of stretching, range of motion exercise, weight-lifting, deep knee bends et cetera, just from fun things like turning over and hauling compost, digging, planting, weeding, deadheading and all those other fun "chores".

I use heat pads for arthritis, but instead of electrical or chemical pads, my favorite source is a "rice sock" that a PT gave me, which is simply a tube (or when made at home, a tube sock) filled with a pound (half kilo) of dry rice (regular, not instant) that is knotted at then end. You zap the rice sock in the microwave for a minute or two and then apply. It will conform to any shape, and unlike electrical pads, will cool down on its own, so is less likely to burn. Unlike chemical pads, it is infinitely re-usable. Another benefit is that if you are someplace random and need more heat pads, you can usually find rice and cheap tube socks for sale even when you cannot find more specialised therapy aids.

andrea

Anonymous said...

I recently found your site, and am very impressed. It will take me a while to read more of it than I can today. I have much less experience blogging than you. I can only hope that the people who read what I write will benefit some. Undoubtedly, your readers benefit. I know I did (will). Thanks! Visit me, or tell anyone who you think might like my site www.therextras.com. My intended audience are parents of children with disabilities.

Oh, and the slide show of your trip was AMAZING! I know several people who will want to see it. Barbara

David said...

Thanks, sis!

Andrea, thanks for the "rice sock" idea. I will give it a try.

Barbara, thanks for reading my perspective. I hope you find it helpful.

Penny - it's amazing how cold AFOs can get. Interesting that botox didn't help Jake either.

AZ - thanks for reading

Anonymous said...

Hey, kid! (I get to call you that, right?!)

What a terrific post! You and your family are some of my favorite people (and your Uncle Mark is pretty high on my list, too! :))

God's blessings to you. Hope to see you guys soon! xoxo

Lee :)

David said...

Thanks, Aunt Lee! And you guys are some of my favorite people too!

terriblepalsy said...

Thank you David. This has helped me more then you will ever know :-)

David said...

I'm very glad it is helpful, Jacqui.

Andrea mentioned about the story about using the pool I really enjoy a warm water pool. It feels good to my body and my spasms, and I can do more movement without the pull of gravity.

Billie said...

This is an amazingly helpful post David. I appreciate you taking the time to do it more than you can know. Thank you.

Billie

EMBelieve said...

David,
Thank you so much for sharing your personal experience in dealing with cerebral palsy. I have a 3-year old son with dystonia quadriplegic CP and I find your summary so helpful. I liked everything you said.
Eugenia :)

barnyardmama said...

I loved this post. My son is still very small, but you've encouraged me to keep at it with the "tummy-time." It is not his favorite, but I am seeing improvement. Thanks for sharing. . .I know I'm not the only one who found this useful.

Mal said...

Thank you so much David for your open and honest post. This will certainly help my son as I am sure will help others.

Lisa said...

THANK YOU, thank you, thank you!

Jennifer said...

I'm new to blogger. I saw your website and added to my blog, if that is okay. This message was so awesome and very helpful to me being a new mom to a son who has quadriplegic CP. Thank you so much for posting this.

Anonymous said...

Hi Dave,

Thanks so much for sharing this with everyone. It gave me such hope with my son Evan who has CP. He is just 17 months but it is wonderful to hear a perspective that Evan will not be able to give me until he is older.

I loved what you said about your parents and the "experts". Makes me feel like my husband and I are on the right path.

Thanks again and hope all is going well for you.

-Ellie

Angela said...

I read quite a bit -- and am very grateful for this post. Thank you (and mom too) for sharing your lives and helping other parents.

Jack is only 4 years old and I loved the point of not punishing or scolding for something that's inherently difficult/unpleasant. Jack loves social praise and rewards and I really, truly believe in the reward/no reward system!

Again, thanks for sharing!

Angela

Shannon said...

Thank you so much for this post. My son is 5 and I am grateful for all of your insight on growing up. I am glad to hear about your stamina issues because this is what we see in Ben, he just can't explain it yet. It will be so helpful to explain Ben's fatigue to teachers based on an adult’s actual experience. We are now making decisions regarding kindergarten and this post has reminded me to do what is best for Ben based on Ben not what is best for the school.

David said...

Thanks for your feedback everyone! I'm so very grateful for your comments. It's nice to know that this post helped so many people.

Anonymous said...

David - I finally had time to read this whole post (and all the wonderful comments), and I am once again awed by your ability to translate your experiences into words and ideas that will help so many people who are facing different stages of your story. As a longtime witness/fan of your family, I feel blessed to be watching as you move into the adult world with clearer ideas of how best to use your past experiences. I also LOVE that your college is being so incredibly responsive. Your life continues make such a difference to so many. Stay at it! Love, Eileen

Special Survivors said...

Hi David.

Thank you for this post. It will go a long way in helping me to help my son.

Take good care,
Heesun

prerna said...

HELLO DAVID! B R A V O!!!!
your post made me cry as each word u said seemed to come out of kavish(my 7 yr old son)mouth.your post helped me to understand him and his feelings to a great extent.it also helped me to understand the areas i need to work on to overcome his future problems and to prepare him for what he might have to face and how to take things,the way you have.i think your parents have all the reasons to be proud of such a wise kid.
prerna

Bruno-sol said...

I thank you can personalize your experience so personal and you open your heart. I am a mother of a child of 3 and a half years with cerebral paralysis. It's hard as parents understand what is our son, if he is happy, if he feels frustration ... and that's even more difficult when he is unable to speak.
I wonder if you sense frustrated as ever and has handled.

Dianne said...

A wonderful post. Your insight into what it's like for parents of a child with a disability are as great as your insights on what it's like to have a disability.
And I will try not to be too hard on myself ;-)
Thank-you.
Dianne

Phyllis said...

Hi David,
I can appreciate how long it took you and your mom to write this helpful info. I have a 24 yr. old son with CP, and we work with him like your parents worked with you . We took him to the Institutes for the Achievement for Human Potential in Phila every 6 months for 20 years and worked with him 7 days a week, home taught him. He is an Eagle Scout and has a 3.77 in the local college right now. My question for you is where do you find your personal assistants? We are in need of a new one in July and Have no clue where to find a PA who is in his mid 20's to help Jefferson with his eBay business, college work, dressing, eating, and personal needs. Where o where do you find help?

Thanks.

Phyllis Bickerstaff
phb@jeffersonbickerstaff.com

Kandi said...

David,
Thank you for sharing your story. I needed to hear that it's okay to take a break sometimes and just have fun.

Penelope said...

I stumbled upon your blog following a long chain that started with Terrible Palsy. I have to say i am eternally grateful for what you have written and your bravery to share your life is commendable. I have a daughter with CP who is 2 and I spend soooo much time worrying if one day she'll think that I didn't do enough, or the "right" things, or all sorts of crazy other things that are needless I'm sure. I wanted to say that your blog gave me peace. Thanks,

Amy

BillieJo said...

Hi David
It 11:30pm as I write, I have come down to my computer for some helpfull insight as my heart is braking. I have a 7 year old son who just woke from what has been many nights with spasems from his CP. It is so hard as a mother to try to help with this when it feels like there is no help. My son has mild CP, they say and he can do enough for himself that they will not get us the help we need, therefore I dont know how to help him nor do I have anyone I can talk to about what might work for him. I am absolutly going to try the warm baths and rest although Kalib is high strung I think if I can get him to settle down a little it might help. Thank GOD for the internet and the wonderful people out there like yourself who share your stories. Thank you from every inch of my being.

Amalina said...

Hi David,
This post is very nice and very informative. It helps me uderstand more about my daughter, she is quadriplegic spastic, CP.
Thank you so much for sharing.

Amalina.

Anonymous said...

I cannot express the joy I have from stumbling on this site. I thank you so so much for sharing your experiences. I have a 2yr old baby girl with cp. I cannot begin to tell you how challenging it is for your wonderful mum can feel my pains, but your story gave me lot of hope. It confirms to me what I have in mind of doing.....starting something to help parents, to make them understand that they and principally them can only help their cp children achieve their potentials. I live in Africa so you can imagine the type of health care we have there, but I am determined that my baby girl will live a fun filled and fulfiled life.
Thank you so much, I will keep visiting this site to read you.

Camzmommy said...

Hey David, Thank you so much for sharing your experiences growing up with CP. My 2 & 1/2 year old son Camden has athetoid CP, with low tone in his trunk and neck, mixed tone in his legs and arms. He cannot sit on his own, stand or walk...or speak. That's why this blog, to me, is so priceless. It gives some insight to me about what Camden may be experiencing (though, as you said, each CP case is dfferent). I appreciated the tips you gave about how I can be a better parent to Camden, and that I'm an "expert." What really struck me was how awesome your parents have been for you and I hope we can be as strong a force as your mom and dad. Using the paper plate art projects was genious, and we will most likely steal that idea!

You work very hard to be where you're at and I admire your strength and determination. What I admire the most, though, is your desire to give back. YOu have, David. Thank you for starting this blog. :)
P.S. I am also adding your blog to mine. HOpe that's cool.

Anonymous said...

I have a 50year old grandson who is severely affected by spastic quadriplegic cerebral palsy. He is nonverbal, so we really don't know what he is thinking or feeling. Often it is a quessing game. You story has helped me considerably to understand what he might be going though. Thanks.

Anonymous said...

That is a 5-year old grandson, not a 50year old grandson.

Mahfooz said...

Hello everyone,
I was wondering if anyone can help me answer the question what your outlook on life is as a child with cerebral palsy. I would be grateful if anyone could just put some ideas forward.

Thanks
Mahfooz Hasan
(1st year Medical Student)

Amy said...

Hi Dave,
I am a parent of a 4yr old with CP. I particularly like your insights re: surgery, AFOs, fatigue. That makes a lot of sense regarding my "toddler". My daughter is doing well in therapy, but I am worried about when she enters a "rebellious" phase (and I know she will!). I am keeping a blog about her life. I'd love it if you checked in on her, or added her to your blogroll.
Thanks!
Amy

RUM said...

My younger cousin's got CP, he is someone i love to the core, I was researching on things like toys, bath and toilet aids that could make life simpler for him when i came accross your post. Its reach heart-touching. I am from India, and to be very honest, all of these support for a CP child are very very expensive in India, my family can afford it, but not a lot of ppl can. And its a shame how children with CP are looked down on in some places of India!

Shavone Miller said...

Thanks for posting this blog. I am a 28yr old mother of a 7yr old son with CP. It's also good for us parents to also get the point of view from someone going thru the same things as our childern are and have gone thru. God bless you for this :)

-Shavone Miller
Lakewood, WA

Anonymous said...

thankyou for this post and telling it from a child's veiw, My daughter is 15months and just last week diagnosed with CP so the realisation she is going to be given a label is very hard to adjust to, as we don't see her with a label. I have many fears for her future and what may happen as she grows up but some of them are eased by your story. We see our baby as who she is and plan on doing everything we had dreamed of doing with her. we have already moved to America and back to Australia in her first year and travelled plenty something we plan on doing more of as she grows up. I look forward to reading more on your blog.

*I googled parents of children with CP and your blog came up*

Justine said...

I know you wrote this post well over a year ago, but I just stumbled upon it and let me tell you how grateful I am that I did. It answered a lot of questions that I had, and also gave me lots of hope for my child. Thank you so much!

chastisyelaine said...

Hi david! its wonderful to hear from an adult that can talk about there past and there future!! My daughter is 2 with cp and as i type to you know i cry because im so scared!! But i wanted to let you know that I LOVE YOU for everything you have done just by shareing your story!!! Im glad to know that me and my husband are doing the things your parents did to help you and im praying that she will walk!!! God bless you!!!!

Cerebral said...

Thank you so much for posting this BLOG, my son Tyson is almost 5 and has CP spastic/quad with little trunk and head control. We keep chuggin along with different therapies and every bit seems to help. He does so well in other areas so I want to make sure he can have every opportunity out there. He can explore life just the same and I am so happy for technology so communication will be easier on him. This blog completely helped me and my family , gives an insight and helps with momentum to keep chuggin along. Keep writing please. Bless you all!!! You are amazing.

Anonymous said...

Hi David,
There is no way I can ever thank you enough for this incite to your life. My son is now 45 years old, born with C/P. He is also totally deaf. Both he and his mom and I learned sign language as he was growing up, but he has never been able to communicate his feeling as you have. We can tell when he hurts, but he will usually say he's fine. It would be easier to deal with if he could tell us, but as you've said, everyone is different and we do the best we can all the time. Thanks again,
Bill Norman

Anonymous said...

David, Thank you for sharing your experiences. As I read your blog I was amazed at how blessed your life has been. You have wonderful parents that have loved you it sounds like even before you were born. They have raise you to be a loving young man who cares about others. Your body maybe frail but your spirit is super man. You are truely amazing. Thank you for teaching us and I look forward to your next lesson.

Lyndon said...

As with all those who have commented here, I share with you all the experiences we had. My son, Karl who's now almost 12 years old has been a great joy and inspiration to all of us, his parents and two siblings. At night or late afternoon, he waits for all us to be with him and as soon as we all gathered round him, he would make his moves for us to take lead in playing or tell him stories of the day. His only message for us getting across is him laughing on top of his voice as we keep on hugging, giggling, and tickling him and we pray.

Anonymous said...

David,
Thank you! I have a one year son who was recently diagnosed with CP. We thought out hurdles were through with him when made it through an intensive heart surgery at two days old. Now we are starting this new journey with him and have some many questions with many to be answered only with time. As parents your heart is so full of love for your child. It is difficult to watch your child be limited in movements and have to work so hard to move in ways that we take for granted. Your child becomes your hero and each moment of progress is embraced in gratitude and pride.

Many people with children without disabilities have difficulty understanding and relating to your life. It is nice to connect with people who understand. It is so helpful to read your blog. It puts creed into the hope we feel in our hearts for our son's future. For parents it is difficult to be your child's advocate as the road is unpaved with many choices and decisions to be made. Thank you for reaching out to parents and giving us this unmeasurable support.

Anonymous said...

David,
Thank you so much for sharing your story. I am right now caring for a 10month old boy who has cp and is in hospital with respiratory infection. The information you provide really helps in regard to decisions. I really do not like how reflux bothers and wakes this child so much. He is a blessing to me and he nurtures me as much as I do him.

Anonymous said...

Thank you for sharing your experience of life with CP. I am a new parent to a six month old recently diagnosed with CP. I know that I will come back to your post in the future. Best to you!

Anonymous said...

Thank you so much for this. I am a Mother of a 6yr old boy. He is high functioning. I feel happy that he has come so far. To hear that u understand the hard decisions, work and love your parents put in. Well it is thankless and I love him.I would give my last breath and never think twice about it. To hear that u understand and appreciate it as an adult. It is warms my heart. U r a good son! I hope he is at peace w all the hard decisions also. Thank you again. I feel hope and support when I read this. For my son and I. You must have a fighting spirit to be so positive and come so far. My son has a fighting spirit. I look to my 6yr old as a hero for all that he has been through and will continue to go through. U truely r lifes living Angels.

Susan said...

I found you by accident. My daughter has medical issues but not CP. Still some of the issues that you write about affect her. I saw the bit about severe reflux. I didn't see if you'd already had surgery and wanted to suggest research into a Nissen Fundoplication. It is not a solution for everyone but it helped control my daughter's reflux which was causing severe swelling of her airway. I wish you the best of luck. Thanks for sharing your insights.

Anonymous said...

Thank you so much for your insights. My daughter also one of triplets has spastic quad CP, just 15 months old at the moment and it is very helpful to hear about your exeriences. Seems like this blog hasn't been updated since 2009 which is a shame.

mimi said...

Hi Dave. What a great post. I have a son with CP who is around your age. He and I have just started a blog too...
http://cerebralpalsygrapevine.blogspot.com/
Mr A's condition sounds very similar to yours and he has faced many similar challenges. His Dad and I have advocated strongly for him too, and he now lives independently, in his own apartment with round the clock support and his own dog, a greyhound. 'They' said it couldn't be done and we were crazy to think we could make it happen. Well, we showed 'them'! Thankyou for your honesty in this post. I'll be showing it to Mr A. Warm Wishes.

Catherine said...

Thank you.

As a parent of any child, it's so difficult to know if you are making the right choices or not. This post brought me much comfort about the choices we are making for our son (who also is spastic quad with a weak torso/neck).

I love the part about biting the therapist during therapy. I have a strong willed, independent minded four year old right now and he sure is one pistol at his therapy sessions. He lets everyone (and I mean EVERYONE!) know how he feels. ;)

Thanks again and wish you all the best!

-Catherine

Anonymous said...

Thanks Dave. I was felling completely shattered today. My 7month premie is a spastic cp and though docs don't agree to diagnoze already i believe its Quadraplegia. Myself and her father feel completly shattered at times. We feel helpless to help her. We also feel like suicide but again somehow gain strength. It really breaks our heart to see her in so much pain.

Melissa Brooks said...

Dave,

I don't really know how to express my level of gratitude for this post. My son is two. He is the first in our immediate family to have CP. His is SQ, Athetoid, as well. He has everything you talked about in the above post. He even has a tracheostomy and due to his CP, his voice and lung function are very weak. Lucky for me, he has an iPad. Unfortunately, he can't use his hands and has a hard time seeing.

I've always wondered why he sleeps so often and why his body doesn't quite gain weight correctly. He hasn't had reflux issues since the NICU, but I do believe it is his high tone and the fact that he has to use every muscle he has to only move one.

I think I have found more parenting advice for him in this blog than on the whole Internet. I've searched high and low. Thank you! Thank you!

Joanne said...

Hi David, I'm a mum o a 15 year old son with athetoid cp. excellent post, thank you. We got rid of his dreadful reflux through a combination of a naturopath and cranial osteopathy. It was like magic and it's never returned. I hope that has helped. Kind regards. Joanne.

Courtney said...

Thank you for posting your story. My 3 year old son has cp and no one can give us any in sight on what might be to come. All we keep getting is "only time will tell" Yes I know it is pretty much a waiting game as to everyone is different in their own way. He is currently using orthopedic ankle braces and a reverse walker to help him start to walk. We are hoping that in a few years we can at least get rid of the walker and he can walk just using his braces. Its nice to know there are other people out there I can relate to. Once again thank you for your wonderful post.

Ashley Schau said...

I have a son that was born 3 months early. He was born oct 4 2011. He was 3lbs 20z at 28 weeks pretty big baby they said. Well when we got home things changed he cried and cried and cried. He was stiff and pulling his arms apart was a workout. I just knew as a mother something wasnt right. I always thought it was his stomach because he was constipated all the time. I have been in and out of the soctors office 20 times since hes been home with symptoms of stiffness, his eyes going inwards and out, crying all the time, drooling, needed to be rough housed,etc. In the end nothing was wrong with his stomach. He was trying to beging to crawl so i gave up thinking something was wrong with him knowing he was 3 months early maybe he was just behind. It didnt occur until i went to my well child visit with his nicu doctor and i told him the signs i told my doctor a week ago and he knew right away to get an ultrasound of his brain which came back to PVL which causes cerebral palsy. After that diagnosis it all made sense but if my doctors in the first place was doing their jobs and communicating with each other they would of known to get an ultrasound. Im pissed hurt mad confused angry upset lost and in pain for my son. I dont know who to talk to cause noone understands that my son wont be able to live a normal life and all i ever wanted was for him to play sports and have a normal life like i didn't. I had to quit my job so i can stay at home and do pt and ot and get all the help i can for my son to give him a chance at life. I just want to know how to deal with this how to cope ways to make my son stronger exercises you think works the best and other ways you think that can help me! i just wish there was a miracle cure for this cause i wouldnt wish this on my worse enemy its hard having to teach him things when normal babies catch on to it and my son isnt thanks for the time i cant wait to hear some ways i can deal with this and be a better mom with all this info eating me up alive.