Jayden’s cerebral palsy causes contracture in his right arm. But he loves his turtle!

How many of you are reading the title and asking what, exactly do clowns and cerebral palsy have in common. Well, truth be told, not much. However, a recent birthday party involving a clown reminded me of the many ways you can get creative in dealing with cerebral palsy.

One of Jayden’s cerebral palsy symptoms is contracture in his right arm. In pictures it looks really bad, but it has actually improved greatly. Despite improvement, Jayden really doesn’t use his right arm and he doesn’t appreciate it when we try to encourage him to use it. I have put stickers, wristbands, food and more on or in his right hand. Every single time I do, he uses his left hand to rip the object out. He gets really agitated whenever I try to get him to actively engage his hand. He’ll let me massage it and he’ll acknowledge its existence, but he does NOT like to use it.

Imagine my surprise when we showed up to a birthday party with a clown who made a turtle wristband for Jayden’s right wrist. He also used a stamp to give him a face painting so he wouldn’t feel left out. I was very impressed that the clown came prepared with a way to include Jayden. I doubt he knew there’d be a child at the party with cerebral palsy, so it seems as though this clown comes prepared regardless. I’m a big fan!

I was also impressed because I happen to collect turtles. How did the clown know? Maybe Clowns ARE scary??!! But, I digress.The most amazing part of it: Jayden did NOT remove the turtle from his wrist. He kept it on during the party and for several hours when we got home. If it hadn’t deflated he might STILL have it on and the party was Saturday.

I have been struggling for a year to get a resting hand-splint for Jayden. The occupational therapist at Therapeutic Innovations made a wonderful one for him last week. Every night I’ve put it on him, or asked his nurse aid to do the same, and every morning I find it on the floor, or the foot of his bed. Every. Single. Time. While I can see how the balloon might be less cumbersome than the splint, thereby, easier for Jayden to deal with, it doesn’t explain why none of the other fun ideas I’ve attempted have pissed him off royally.

Short of learning how to make balloon animals, or hiring a clown for a nanny, I’m not sure what I can do to get Jayden to accept things coming into contact with his right arm. Guess I’ll just have to keep keeping on with the splint and hope for the best.

Disclaimer: None of this is meant to make anyone who isn’t raising a child with cerebral palsy feel “stupid,” nor is it meant to say that if you aren’t raising a child with cerebral palsy that you can’t possibly know any of this. Of COURSE you can. This is meant for the larger group of people who have had no exposure to cerebral palsy. It’s also meant to be a lighthearted display of how parents with cerebral palsy speak a unique language.

Tone

What most people think it means: Something regarding sound. The “tone” of one’s voice, “tone deaf,” etc.

What it means to cerebral palsy parents: The tightness of our child’s muscles. Very tight/tense limbs or muscles are said to have high tone. Limbs and muscles with less tightness, and possibly less control are said to have low tone.

Botox

What most people think it means: Botulism (which it IS, actuall) or, something rich trophy wives get injected into their faces to slow down the aging process.

What it means to cerebral palsy parents: A possible treatment for children with high tone and/or spasticity.

Spasticity

What most people think it means: I’ve never heard someone use the word spasticity before I had Jayden. In most instances people use the term “spaz” or “spastic” meaning high strung. Example: Calm down, don’t be such a spaz. OR Why are you cleaning the counter AGAIN? You’re spastic.

What it means to cerebral palsy parents: A fancier word for Tone. It’s usually used to describe a more permenant condition of high tone and is caused by neurological abnormalities.

Note: Spasticity and low tone are also reasons why children with cerebral palsy may have super fast metabolisms. See, even when we are relaxed, our musles are somewhat contracted, even if we don’t know it. If we were to completely relax our muscles, contracting them to create movement would be exhausting, because the effort would be intense. Children with cerebral palsy may not have enough contractions in their muscles for movement to be initiated from a relaxed state, thereby making them work much harder than most to move.

Occupational Therapy:

What most people think it means: Therapy relating to one’s actual occupation.

What it means to cerebral palsy parents: Therapy relating to upper body rehabilitation, such as treatments for spasticity or poor feeding habits.

Physical Therapy:

What most people think it means: Therapy for adults who have suffered a sports injury or car accident.

What it means to cerebral palsy parents: Therapy that helps our children overcome physical limitations brought on by the neurological damage that caused cerebral palsy.

Speech Therapy:

What most people think it means: Helping someone overcome a stutter or other speech impediment.

What it means to cerebral palsy parents: Sign language lessons, augmentive devices to assist in communication, speech cards, switch toys. Speech therapy isn’t about learning how to TALK. It’s about communication overall and I’m always amazed and how speech/language pathologists come up with such creative ways to aid in communication.

Neurologist:

What most people think it means: Someone who can diagnose ADHD.

What it means to cerebral palsy parents: Someone who can detect seizure activity in our child’s brain and who can show you a brain scan detailing where the damage has been done to your child. Also, someone who can administer Botox treatments.

I’m sure there are many more terms that we use when discussing cerebral palsy, but these are the ones I find myself explaining most. Readers: What terms do YOU find yourself explaining to other parents?

When he was here in Goldsboro, NC the occupational therapist said she’d take care of everything regarding getting him a splint, but it never happened. She said she needed me to sign a form consenting to the release of his medical records to the bracing shop. So I signed it. About a month later, I followed up and no one knew anything. Then I was called back and the OT asked me I she had my permission to release Jayden’s therapy records to the bracing shop. So…what did I sign?? I won’t dwell on the other issues with the previous therapy center, being that I’ve covered those in several other blog posts.

The amazing thing about this splint? They made it right there in the center! Last week we molded it and sized it appropriately and this week the OT made a few finishing touches to it and sent us home with it.

So, here’s what’s been accomplished so far in therapy for Jayden in just six sessions:

• Got a foam grip for Jayden’s silverware and other hard to grip items
• Learned ways to help Jayden “walk”
• Learned a program to help Jayden with words and sounds (It’s called earobics)
• Learned about 5 new range of motion exercises
• Jayden gets snacks when he does a good job in therapy (not necessarily an accomplishment, but a nice touch)
• Got a resting hand splint in less than a month.

For awhile I was wondering if therapy was even worth it. It seemed like it wasn’t doing much good. After my experiences with Therapeutic Innovations though, I know that the effictiveness of therapy is reliant on the experts that render the services. If you are having issues with your childs therapy, I highly recommend that you don’t give up. Look for a new therapy center, or try to resolve the issues at your current center, if possible. Physical, occupational and speech therapy can all contribute immensely to your childs development, if they do it right.

Mother’s Day is a day to recognize the hard work that moms do on a constant basis, so I’d like to take the time to celebrate Mothers around the world. We are nannies, security guards, cooks, maids, chauffeurs, counselors, event planners, wardrobe coordinators, teachers, first responders and more. The amazing part is, we do all these jobs free of charge. In fact, we PAY to do these jobs. The average monthly cost of raising a child is about a grand per month. Take that statistic with a grain of salt though. I suck at math.

We don’t ask for recognition or thanks, but that doesn’t mean it’s not nice to hear it. We are often so busy with life that we don’t even realize exactly how much we do for our children. Our job description is actually quite staggering.  Doing the job of a mother is even more intense when you are raising a special needs child. When your child is limited in speech you automatically become an interpreter. If you’re child’s non ambulatory, you’re a physical therapy assistant. If your child has a feeding tube or catheter, you’re suddenly a nurse. Some parents with special needs children are all of these things, on top of the “typical” mom duties. Take the physical part with the emotional toll it can bring and you realize that our job really isn’t easy, though we love it!

Basically, all mothers are Super Women and should be treated as such. We should recognize that in ourselves every single day, not just mother’s day. If you describe a day in your life to someone that doesn’t have kids, he or she will literally have NO idea how you do it. It’s second nature to us, but from the outside looking in, this job is quite difficult. No great reward is without difficulties though, and I’m sure I speak for everyone when I say I wouldn’t change it for the world. No job is more important than that of a mother. Let’s not forget that!

I hope you all are enjoying your Super Mother’s day! I’ll end with a text my friend sent me this morning

“I think moms like us (with our special gifts) are truley in every shape and form SUPER (and you know Superman was bada$$ and we gotta be bada$$ to rock his cape and title”

PUT ON YOUR CAPES AND HAVE A HAPPY MOTHER’S DAY!

In occupational therapy we learned to make page fluffers.

I learned an awesome new trick during Jayden’s last occupational therapy session and I figured I should share it. If your child struggles with turning pages in a book try this doing what I learned in occupational therapy to make it easier. For those that may not know, occupational therapy has nothing to do with finding an occupation. It’s all about upper-body rehabilitation. Now that we’ve cleared that up….

Jayden has limited use of his right hand and we are constantly looking for ways to get him to use his right hand in occupational therapy. If nothing else we’d like him to use his right hand as an assist, so that is the main focus during occupational therapy. However, his left hand isn’t to be ignored. His motor skills on that hand are great and we’d like to keep it that way.

I love to read to Jayden, but it seems as though whenever I try to read him a book, he snatches it away from me, shuts it and hands it back, so I don’t do it often. Hopefully, what they taught me in occupational therapy will help out. I’m not sure if he’s shutting the books to be bratty, or if page turning is difficult. Just in case it’s due to difficulty, I’m now adding page fluffers to his his books, per his occupational therapist’s recommendations.

To make page fluffers you’ll need:

Cardboard

Binder Clips

Scissors

X-acto Knife

Tape

Instructions:

Cut your cardboard into small squares. Make sure they are small enough to work with, but big enough to stick out past the pages of the book. Use your x-acto knife, or a razor to cut a slit into the center of the cardboard squares. Slide the binder clip into the slit, then clip it onto each page of the book. Now, your child can easily grasp the pages and flip them over, perfect for children with limited fine motor skills! I pick up Jayden’s right hand and slide it under the page fluffers to help him turn the pages.

What tricks have you learned in occupational therapy, or any other services for your child?

Therapeutic Innovations is Number 1!

For the past month Jayden has been going to Therapeutic Innovations in Greenville. It’s about 45 minutes away, but oh-so-worth the drive. That’s saying a lot, because I HATE driving.  In just three sessions at Therapeutic Innovations I have more hope that Jayden will walk than I’ve had for the past year or so. Of course I have ALWAYS believed he will walk, but Therapeutic Innovations reginited it for me.

Jayden has been at several excellent centers (NOT including the one right before Therapeutic Innovations) but this one is special. Not only have they given me almost more tips than I can remember to help with Jayden’s progress, but it’s truly a team effort. Though physical therapy, occupational therapy and speech pathology are extremely different, they are more effective when they are used together. Jayden now has all three services on the same day, with physical therapy being last, which I love because Jayden’s usually too tired for speech after a good round of physical therapy. The entire office-even the receptionist- rallies around the kids, whether or not one of them actually works with a particular child. The excitement of the staff is refreshing.

Unlike several places I have been, Therapeutic Innovations doesn’t object to parents being in the treatment room. In fact, I even brought the four year old that I babysit with us before and he was able to be in the room with us (I don’t make a habit of that though. He was only along for the evaluation). Though it’s nice to be able to run a few errands while Jayden’s in therapy, I appreciate that it’s not encouraged at Therapeutic Innovations. Being able to be in treatment with Jayden makes me feel better for several reasons. First, I can see what they are doing and I know they aren’t just in the breakroom watching the Yankee game while my insurance sinks money into their services. Second, I get to learn exercises to do with Jayden at home. Granted, the last place he went to gave me a print out of some exercises, but no hands on and no demonstrations. NOT the same. I can Google a freakin’ handout for goodness sake! Third, and most important, Jayden’s smile is awesome and he smiles a lot when he learns something new.

Who else has found a place (therapy, surgeon, etc) for their children that’s an absolute Godsend? I know Therapeutic Innovations is that place for us.

This is the face Jayden makes when I can’t answer a cerebral palsy question.

The following comment, on my Facebook page, Cerebral Palsy Parenting, inspired me to address the issues many parents have with the guessing game involved in cerebral Palsy.

“Is anyone else tired of the guessing? I swear someone needs to write a book for new parents who have a child with CP. We have never been told to push Bella to do weight bearing for her hips to stay in place. I stumbled on to this after talking to another parent who has a child with CP. This is not the first thing we have had to fumble our way through since gettin Bella. My daughter Bella is 4 and has spastic CP. She does scissor moderately and isn’t walking yet. We were told today that my daughter was having a problem with her right hip being a little out and it would cause hip subluxation. Our physical medicine doctor did not agree with the ortho specialist to try Botox and said he didn’t think it would help. They are recommending surgery to cut some of the muscles pulling on the hip bones. I am wondering if anyone has any experience with this because it seems a bit barbaric to me! After talking to our first PT we are going to hit weight bearing really hard over the next few months before our June 25 appointment to see if this has any type of impact upon the hip bone.” Cherie

First, thank you Cherie, for your comment. I know you aren’t the only one who feels this way, because I do too, and I’m sure many others who raise a child with cerebral palsy can relate as well. Unfortunately, cerebral palsy is so broad that a book for new parents would turn into a medical journal that most average Joes couldn’t read. Where one child may have mild cerebral palsy and simply speak with a slur, another might be totally bed ridden and unresponsive. Accounting for everything in between for a parent’s handbook could get cumbersome. That is one reason that I started this blog. So that I could learn what other parents are doing and share what I know with them. Information sharing can be quite useful when dealing with the many variables of cerebral palsy.

For example, when Cherie mentions that no one told her to try weight bearing with her daughter, perhaps she wasn’t told because no other parents she knows of have been told the same thing. The weight bearing may have not worked for others, so no one else bothered to mention it, or even knew of it. Why doctors haven’t brought it up until recently is beyond me. All I can say is that the same way cerebral palsy varies between children, the knowlege of it varies between doctors. One doctor may be a walking Encyclopedia for cerebral palsy where another is still figuring it out, just like the parents.

Regarding the Botox, it is my personal opinion that it wouldn’t help as Botox is typically used for spasticity. That doesn’t however mean that it can’t be used for something else. Not being an orthopaedic surgeon or neurologist, I wouldn’t know. I only know that I’ve learned from raising Jayden. This is just another example of how difficult it can be to pin cerebral palsy down. Jayden had hip problems as well and options other than surgery were never presented. I’m not saying it’s wrong, but reading Cherie’s comment, I do find it odd. The difference could be because of different doctors, or different children. It’s hard to say. The orthopaedic surgeon, neurologist and physical therapist were all on board for Jayden’s surgery. I still don’t know if it has done any good, as Jayden still doesn’t walk. He scissors, but Botox has helped that in the past.

The many differences between just two parents raising a child with cerebral palsy are extreme. They don’t even amount to the TIP of the proverbial iceberg, so you can imagine how many differences would be encountered between three or more parents.

I do, however believe that as parents we can do better with exchanging our personal experiences. Had I known that Cherie was told to try weight bearing before surgery about 3 years ago, I definitely would have brought that up to the doctor before proceeding. Unfortunately, no one book, doctor, or team of doctors can realistically account for everything involved with cerebral palsy. So as parents, we need to know what to look for and what questions to ask. If nothing else, I hope that my blog prompts the right questions for other parents to ask their team of experts. Bringing together parents who raise children with cerebral palsy is one of the best ways to circulate the information we are all seeking. What one of us doesn’t know, another one will, in most instances.

Let’s try to keep sharing our knowledge and eliminate as much guesswork as possible. I look forward to hearing from other parents about their experiences and knowledge they’ve gained about cerebral palsy through the years. Thank you for reading!

I’m not saying Jayden will play for the NFL or be an Olympian all because of therapy, but I AM saying that he has more potential than his previous therapists gave him credit for. That, of course was something I already knew, but I love to see it validated in the therapy center he’s in now.

It’s a shame I don’t have pictures to post of his last therapy session. Silly me. I was charging my phone and there was no memory card in my camera. If I had been able to take pictures, you would have seen Jayden being held up by one therapist who sits on a rolling stool, and another therapist who stands in front of Jayden. The one on the stool rolls forward with Jayden, and nudges his knees forward, prompting him to step. The person standing up pulls on some straps that are wrapped around Jayden’s legs and walks backwards. In essence, Jayden is WALKING, albeit with lots of help. Still, this type of therapy has me convinced that Jayden will walk on his own one day.

This is exactly why you should never stop therapy with your child. There is no way to predict what your child will or won’t do in the future, so there’s no reason to limit their abilities by assuming that they can’t progress further than where they are right now. While it’s not known for sure that therapy will make a difference since it varies between children, it should ALWAYS be pursued, unless and until your child is fully independent and able to do what any other child his or her age can do.

The absolute worst thing you can do to your child’s development is to give up trying to further it. Never give up on your child, and never allow a therapist, or any other member of your child’s plan of care to do so either. If they do, find a new one.

I’m confident that Jayden will walk, and that therapy will play an enormous role in that.

Here’s what I’ll pass out to the people who have questions about cerebral palsy in the future.

I’ve discussed before, at length, how I feel about people approaching me with questions regarding cerebral palsy. I do not mind the asking, so long as it’s done tactfully. The other day though, while I spent way to much time in Walmart, I endured more questions and comments that I do on a typical outing. Usually I only have to explain cerebral palsy maybe once or twice while I’m out and about. Last week, for some reason, there were FOUR… count ‘em… FOUR different kids who were unaware of the inappropriate-ness of pointing and being loud. “Mommy, why is he in a wheelchair?” At least they didn’t speak directly to me, so I know they were taught not to speak to strangers. Too bad they weren’t taught to use their inside voices, or not to point.

Look. I get it. Kids are curious. Kids will ask questions. I don’t mind the opportunity to educate anyone on cerebral palsy, cause let’s face it, the information is out there, but no one thinks to read up on it unless they are directly affected by cerebral palsy in some way. I can understand that. What I can’t understand is the lack of manners. These weren’t tiny kids either. I think the youngest one was about 8 years old. So there are 9-10 year olds that still haven’t learned how to behave in public.

But… there’s nothing I can do about it. I’m sure if I discipline someone else’s child the cops will be called. I’m assuming parents wouldn’t take well to my attempts to correct their child’s undesirable behavior. Not that I’d smack them around or anything. Believe it or not, I don’t really believe in that, unless the child is doing something unsafe. What I CAN do though, is educate the child, and the parents on cerebral palsy. Instead of being annoyed at obnoxious children (who, by the way are that way through not fault of their own! POLICE UP YOUR KIDS PEOPLE), I will from now on, stop, face the child and the parent(s) and tell them why Jayden is in a wheelchair. It won’t be the Reader’s Digest version of cerebral palsy either. It’s going to be the birth to present story of how Jayden got cerebral palsy, along with how it can happen for others, the varying levels of severity, diagnosis, prognosis and a partridge and a pear tree. Oh, on the suggestion of my great friend Treya and I’m working on making fliers to pass out as well, or pamphlets even. After all, I can’t complain about a lack of education if I don’t do my part to educate.

Taking the time to explain things to people when they ask will accomplish several things: first it’s an opportunity to educate those who want to know (in asking about the wheelchair I’ll assume they want to know), second, its a chance to market this blog, possibly driving some new readers to it, third, if I’m explaining to a child who asked me, sans manners about it I just might be able to embarrass the parents and get them to teach their children some manners. Again, asking is fine. Pointing and getting loud is NOT. Never will be.

How do you all feel when asked about your child? Do you get annoyed, or do you get excited to educate someone on cerebral palsy? Are there things you used to say that you don’t any more? Or are there things you wished you’d said? The only way to educate people on cerebral palsy is to answer the questions, no matter how much they annoy me!

Truth be told, I have never been very good at soliciting donations from anyone. EVER. When I was a (bad) cheerleader (for one season, freshman year) it was our responsibility to get sponsors to help pay for our uniforms. If it wasn’t for the fact that I was friends with two people in town whose parents happened to own businesses, I never would have had the uniform. Pretty sure if I was ever a Girl Scout I couldn’t have sold any cookies. Not even Thin Mints. Halloween last year, my super cool plan to take Jayden to the mall and ask for donations (instead of candy) for United Cerebral Palsy  yielded no results.  So, trying to get a wheelchair accessible vehicle donated is no different. You can’t be good at everything right? I’m not sure what it is. Maybe I’m just not charming enough. Or maybe I just don’t have people skills like that. In any case, don’t ever pick me to help you with fundraising. Or gardening. Or math.

Either way, I need the wheelchair accessible vehicle, and I need it sooner, rather than later. Looks like it’s going to be later though. I have made the decision to get ahold of my finances (to be fair they are better than they were when I worked full time) and pay down some bad decision debts of my past and get the wheelchair accessibe vehicle myself.  I think if I do things the way I have it all planned out, I can get one in the next year and a half or so. The plan: pay off debt (instead of buying nonsense that I never use), and save. Use the money saved and my F150 to get a used vehicle without paying a sky-high intereste rate. If I’m REALLY lucky I can buy it outright and not even have a car payment. Then, Medicaid can make the modifications. Whatever they can’t do, I’ll do on my own, even if it does take some time.

Now that I’ve formulated a decent plan, I feel better about getting a wheelchair accessible vehicle for myself. I can’t help but to be bothered though, with the fact that not everyone has the ability to make a plan like mine. There are TOO many parents in debt because of their children’s medical bills, or other family issues. I know most of us would be happy to pay off what we owe to doctors and specialists if possible, but when our children aren’t being seen, they still need to eat, and wear clothes. So do we. So, medical expenses fall by the wayside sometimes. I have been lucky to have TRICARE (you won’t hear me say THAT often) and Medicaid for Jayden, but not everyone is so fortunate. So many struggle with medical care and bills that the last thing they’d be able to do is get a wheelchair accessible vehicle, even if said vehicle is needed for their own safety and that of their child. I know personally, I don’t feel particularly safe stepping up in my tuck while holding Jayden. I just thank the Lord for my decent physical strength and pray that it will keep working for me until I can get the van.

Though I still suck at fundraisers, I’d like to try. Again.  I have looked into some fundraisers on the web, and I’d like to try a few out, if I generate enough interest. I’d like to do so with a pay it forward type of feel. I’ll find a family (I have several in mind) and do a fundraiser for that family, with the promise that if they receive a vehicle, or the money to get one, they will contribute to a fundraiser for another family.

I know what it’s like to need a wheelchair accessible vehicle, and I know there are other families who have a need for them as well. Please message me on my Facebook page, or comment here if you’d be willing to joing me in getting wheelchair accessible vehicles for families in need.