Aquatic Therapy

If your life is anything like ours, you've spent plenty of hours involved in therapy.  Jackson has been involved in one form of therapy or another since birth.  It's part of our family's culture. 

This past summer, we stumbled across aquatic therapy and fell in love.  Jackson is quite used to a therapy gym, swings, balls, tubes, etc.  But... he hasn't spent a lot of time in a pool doing therapy.  The change has been great for him.  He is excited to go.  He enjoys himself while he is there, and most importantly, he has made great progress.

For our therapy sessions, we go through Mountain Land Physical Therapy.  Mountain Land books time at the Layton Surf and Swim Pool.  Mountain Land's trained therapist, Michelle, conducts the therapy sessions and she is wonderful with Jackson.  She quickly identified how and when to push him and how to help him stay motivated to work hard.  

Whether it is weights in the pool, using rings to work on flexibility, and coordination, or jumping the "waves" to help build muscle during the open swim sessions, aquatic therapy works for Jackson. 

Michelle, or fearless leader.

Jackson even worked on balance.  Who knew you could hit so many of his target areas in just one session.

Because Layton Surf and Swim is wheelchair accessible, aquatic therapy is a great option for those in wheelchairs.  Some of Michelle's clients before and after Jackson's session used chairs.  The water is a perfect way to stretch those tight muscles and to give little bodies the freedom to move. 

One other great perk is with regards to insurance billing.  For us, aquatic therapy was billed to our insurance as a form of physical therapy and made the therapy much more economical.

Whether it is at Layton Surf and Swim with Mountain Land or with a therapist at your local pool, we highly recommend you check it out.  I just wish I would have known about this therapy option years ago.  Therapy is once again, FUN!

Bamboo Brace

I got this email from Sue of Professional Therapies, oh, about two months ago. I finally got around to taking a peak at the information and was thrilled at what I found! Read this over and see if this might help your kiddo or any of your friends and spread the word!....

"My husband and I are both physical therapists with a pediatric practice in Salt Lake City. About 10 years ago my husband (who is NDT trained) felt there was a tool missing to help him treat children with cerebral palsy and over time (and many prototypes) we developed a pediatric elbow brace called The Bamboo Brace that we manufacture locally.

"Although we originally developed The Bamboo Brace for kids with spastic hemiplegia type CP we soon realized it's success in using it for children with Rett Syndrome, Brachial Plexus Injury, sensory disorders, global motor delays, etc. Our brace is unique because although it promotes extension at the elbow it comes with 5 different flexible and interchangeable stays that adjust to varying amounts of spasticity/instability depending on the individual child's needs. The above link will take you to our website for more details and information on how it works and who can benefit from using The Bamboo Brace."

About the Bamboo Brace

Bamboo Brace reviews

Bamboo Brace on facebook

Kids Beyond Limitations

 

I find something interesting. When Chloe has an ear infection, there are multiple antibiotics available to help treat the cause of her symptoms. This way if she has an allergy to a medication or a contraindication with another medication she is on, or if one antibiotic just tends to work better for her, then options are availble. However, when it comes to physical limitations, there is only one option: physical therapy. Please don't misunderstand, I am not under-cutting the specialty of physical therapy. It has its place for many people and many indications. However, would it not be logical that OPTIONS be avilable? Just like the example of antibiotics, wouldn't it make sense to see what the response is for that specific person and/or that specific diagnosis or symptom? Physical therapy doesn't seem to be working, so shouldn't we be trying something else? Yes, physical therapy works for many people, just like penicillin does. BUT, just like penicillin, it doesn't work for everyone.

Well, that's what we did a few years ago. We tried something else. I had heard through the special needs blogging grapevine about Anat Baniel Method (ABM). I thought I'd give it a whirl. In the first half hour visit, Chloe made more progress than she had made in over two years of physical therapy! I felt a difference in her core strength after a half hour! I knew I had to provide this therapy for my daughter. Unfortunately, though, since the healthcare industry only understands and approves physical therapy as a valid form of treatment, we had to pay for every dime. But since my husband and parents also immediately noticed the difference in little Chloe's body, it didn't seem like a burden to sell some of our possessions and humbly accept financial contributions from my parents. After only 3 months of Chloe being in ABM, she could hold her head on her own, use her hands better, and sit with limited assistance. Because we could not afford to keep it up (we only had so many possessions to sell!), we had to quit the therapy and watch the regression.

Whoa. I didn't plan on getting on such a soap box, but it just kind of happened! Anyway, what brought this up was the fact that Anat Baniel, just last week released a book all about this therapy. At first I was excited about the book, then sad because it was just a reminder that we can't afford to do what works for our little Chloe! BUT (whoa, me and my soap box on this post! Sorry!).... in case anyone else CAN afford this and/or is just interested in learning more, I had to share our experience and the news about the book release!

My main point? If you're not seeing results with traditional therapy, look into this book. If you can find an ABM practitioner in your area, then give it a whirl. In some areas, they have free sessions so people can try it and see if it works for them. It's worth looking into!

Fine Motor Fun

Our kiddos are always doing therapy, but it's nice to make it fun for them when we can. Here are a few fine motor-building activities to try! Images linked to sources.

Velcro Bottle - Detergent bottle, velcro, toys....
take toys off the velcro and put them in the empty bottle.

Use oven racks or cooling racks and large ribbon to practice weaving

Jumbo popsicle sticks, magnet strips, and paper clips... sorting, counting, fine motor.

DIY Geoboard

Practice shapes, colors and buttoning with a button board

Pipe cleaners & a strainer to practice accuracy

Popsicle sticks and velcro to practice making shapes

Adaptive Sports Academy Class

As a mom of a child with special needs, there have been times where I've been frustrated by "limitations".

Oh, you know... the basics. Little things like speech limitations, social skills, or ability to control behavior, etc, etc. But I get it. It's all part of the package and thus, our life. We work around it. We immerse ourselves in therapy, doctor appoints, and medication. With time and LOTS of work and repetition things can and do get better. Progress is made.

But.... there is one area that has been a continual challenge for us on this journey. Because of Jackson's disability, finding interests for him outside of our home has been a challenge. While typical kids can choose from dance, music, the arts, and sports, Jackson has not had the desire or ability to really connect with any particular interest or hobby. Part of that is because he has a hard time connecting with people in general. However, he does enjoy Scouts. Yay, for Cub Scouts!

I think if we lived closer to SLC, there would be more opportunities for him to participate in adaptive sports and activities. Plus, let's face it. When you have a child with special needs AND other children with their own set of needs, the money you normally dedicate to that child's "typical activities" is instead dedicated to their therapy, medication, and medical bills. Plus, when you are going to OT, PT, Speech, and Psych - who has time for one more thing, right? :)

We also tried to get Jackson to "play down" on community leagues with his younger brother. For a few years, this seemed to work well. Although, now we're at a point where the younger age group's skill set is advancing and Jackson is finding it more difficult to keep up. Plus, the desire is not there. In baseball, he enjoys hitting, but would rather pick grass when it is his turn to be in the outfield.

So... what to do, what to do?

This past fall, this topic was on my mind heavily. Jackson has been a therapy kid for 11 years and I have felt the tides beginning to turn. I needed to find something for him that wasn't so clinical. Heaven knows we have our clinical plates FULL! I also wanted to find something for Jackson that would be enjoyable and let him interact with other kids (social therapy) in a more typical environment.

Do you every have those moments where you know you were lead to a certain point? Well, on a certain day in October, I had that a-ha moment. I knew I was where I needed to be. After dropping Lex off at dance, I decided to venture west to a tumbling facility in K-town. But... they were closed. Every time I've stopped there - they've been closed. Grrr...!

I then remembered the Sportsplex. I remembered Collin had participated in their Sports Academy programs in the summer. It was worth a try. So I stopped in and began asking questions at the front desk and described what I was looking for.

One thing led to another and I ended up talking to the Gym Manager, Joel. He was great and very receptive to my questions. While the gym didn't currently offer anything I was describing (other than individual personal training and a kid's class), he said he was happy to help me put something together.

At first I thought I would like to take on another project / opportunity. (There really aren't a lot of adaptive activity options in Davis County.) But, I also knew my plate was full. So... we decided to go with the existing kids' classes and hope for the best.

Not more than two weeks later, we were at ward party and our new neighbors sat down beside us. Camille Bennett is darling and just happens to be finishing her masters in.... wait for it.... Special Education Physical Education. She is currently working in programs like the one I want set up at the Sportsplex.

So, I said... "Camille! I have a business idea for you! You would be perfect for this. There is such a need for these types of programs in Davis County."

Fast forward two months, and.... it is happening! My neighbor, Camille, and Joel, from the Gym, have worked their magic and have created an Adaptive Sports Academy Class. It is going to be great. Here is all of the information. If you are still with me this far into the post, PLEASE help us pass along the information to anyone who may need a little extra help with coordination, agility, sports, technique, social skills, etc. This isn't necessarily a class for kids with "special needs". After all, what does that mean anyway? For heaven sakes, I have special needs - lots of them. :) It is a class for anyone who may not flourish in the typical environment - for someone who may need to take things a little slower and who needs a bit of extra help. This is the class!

They probably need about 10 participants to really make the class work. If they have more register, additional classes will be added. I truly think this is a perfect opportunity for so many kids who just didn't thrive in traditional sport settings. I am crossing my fingers that it will be a success.

(ps - I'm not be compensated to promote this class, nor am I affiliated with the class in anyway. Well, other than being a passionate mama bear who wants to find programs for her son.) :)

pss: Now go!!! Help me spread the word! Classes begin Thursday, January 26, 2012

Adaptive Sports Academy Information

Class Description:

Adaptive Youth Academy provides children who have unique abilities and needs with the opportunity to learn and practice athletic skills, improve fitness levels and to improve self-confidence. Not to mention, having the opportunity to be part of a team. If they enjoy playing sports and want to be a part of a team this is a great opportunity and your kids will LOVE it. This class will be taught by Camille Bennett.

This class will be offered on Thursday from 4-5pm. If there is enough interest a second class will be from 5-6pm on Thursdays. Classes will begin on Thursday, January 26, 2012.

Adaptive Youth Academy is just $30 per month for SportsPlex members or $40 per month for nonmembers. The classes are grouped into four sessions that each include eight weeks of instruction. For example, Session III runs from Jan. 26 to March 15 — classes are not held during weeks surrounding major holidays. There is a one-time enrollment fee of $20.* If you already paid the enrollment fee when you registered for Session I, you don’t need to pay any enrollment fee to register for Session III. You can pay the enrollment fee online to secure your child’s spot in the program.

Visit the SportsPlex website at http://sportsplexgyms.com/youth-academy-center/sportsplex-youth-academy-classes for more questions.

Some quick facts about the new Adaptive Youth Academy class:

· Adaptive Youth Academy provides children who have unique abilities and needs with the opportunity to learn and practice athletic skills, improve fitness levels, and to improve self-confidence.

· This is a great opportunity for to be part of a team and practice sport skills.

· This program provides a smaller group, more practice time, and adaptations needed to help each athlete learn skills at their own pace.

Bio about the teacher:

Camille (Lott) Bennett is currently a Master’s student at the University of Utah in Special Physical Education. Camille grew up in Kaysville and attended Davis High School. While growing up she played many different sports. Her main focus in athletics was Track and Field. She was recruited to be a sprinter and hurdler at Weber State University. She received many All-Conference Awards and was a three-time Big Sky Conference Champion in the Women’s Mile Relay. Camille got her Bachelor’s Degree in Physical Education, Health Promotion, and Coaching Sport. She has spent over 500 hours planning, teaching, and coaching students with disabilities in Davis and Weber School Districts. Camille is married to Justin Bennett and is currently living in Layton.

~~~

If you know of any similar classes in your area, please leave a comment!

Now I Can Photographic Documentary Book

This time of year it seems like everyone around the world opens their hearts and their wallets to help those around them. It's actually quite a beautiful thing. Part of me doesn't care that it's only during this time of year that people seem more charitable. It seems appropriate, really, that if there is only 1 time of year when we all open our hearts to more giving of our time, talents, and physical means...it would be now. It makes me happy. If you happen to be looking for a good cause in which to help or donate to, I have an opportunity for you here.


Many of you know that Samantha attended therapy at Now I Can this past Fall. It was fantastic and we will return in March 2012. While we were there, I met a photographer, Michael Ririe, who became attached to these children. He has devoted his time and talents to spreading the word, through is talent, about Now I Can ~ and our children. Most recently, he has put a book together filled with pictures and written contributions from families. It is beautiful. He's waiting to gather the funds for publication. Maybe it's 'cause my baby girl in it a few times and I actually wrote in the book...I mean, that is kind of cool...but I want this book published. I really do believe this book will make a difference. His previous work to draw attention to Now I Can was a success, but he's turned it up a notch with this book. In creating a book of professional photographs that showcase these children...their beauty, spirit, and drive...as well as what is written about them, we are hoping to bring more awareness and raise funds for the center -- allowing more financial assistance to families like us. We were recipients of a grant that helped cover some of the expense. That extra money made a big difference to us and insured Samantha's return to Now I Can. What if every family in need could send their child to Now I Can with some kind of financial assistance? What is the potential of this small book? It will raise awareness. It will tell the real story to future possible donors. And ALL proceeds generated will go back to Now I Can therapy grant fund. 100%. That money will go towards Sammy. It could go to your child. $1? $5? $12.75? $25. More? We have 348 "registered" followers on Kidz. What if we all donated $5? That's $1,740. Pretty cool. Anyway. Check out the link to Kickstarter -- Now I Can -- A Photographic Documentary Book and watch the video. And decide. If enough people don't support it and the book doesn't happen, your donation won't be charged. You won't "lose" a thing. We have until December 31. But if there are enough of us, and this book does happen, you could be one of the many helping families just like ours.


The video, alone, is worth a look.

Hunter: Now I Can

Watch this video of Hunter's therapy at Now I Can, an organization that does intensive physical therapy. Hunter's mom, Chrystal, said the therapy was a definite success and soon she'll be doing a more formal review of her experience at Now I Can. In the meantime, enjoy the song and lyrics that are the backdrop to Hunter's video: Now I Can by Jarrett Burns.

You knew all you had to do was plant a seed
And inch by inch, watch it grow in me
With every step, you knew all I had to take
Was a part of this, a part of finding my own way

'Cause it was buried in me, doubt and disbelief
Tiny and afraid, wanting to believe
There is so much more to me.

'Cause now I can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

'Cause now I can
Do almost anything,
Overcome impossibilities
You gave this to me

Now I Can
Climb all the mountains
Or chase away the shadows,
Reach for the stars
And know that tomorrow
Could be whatever I can be today

Now I Can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

Now I Can.

Now I Can needs your help to win up to $250,000 from the “Vivint Gives Back Project” to help children with disabilities!

Please take 30 seconds EACH DAY until August 27th to do something great for a special child.

Follow this link to vote for Now I Can.

Please contact Tracey with any questions: tracey@nowican.org.

The Quadriciser

Here's a little info about The Quadriciser from their website:

With the Quadriciser motorized therapy system, those who are unable to walk can simulate reciprocal movements of walking while lying in the supine position. This cross-crawl pattern stimulates the brain and improves muscle function. The Quadriciser is a total body therapy system that offers a wide variety of therapies to those who are unable to move by themselves. As the user progresses, a more active therapy session may be obtained through simple adjustments of tension, speed, and resistance, thus providing even further results.

This video gives and introduction about what the Quadriciser is. I am definitely going to be checking into this piece of equipment.

You can also watch an interview with the creator of the Quadriciser on Exceptional Family TV here.

Now I Can

I just found this amazing organization that does intense physical therapy in Utah called Now I Can. I am intrigued and excited to learn more. I had to share it with all of you!


Here is a video introduction from/about the owners of the organization:

And a news clip:

Isn't amazing? I just found out about it and it's too late to call. You better believe I'll be on the phone to them first thing in the morning to find out more!

This incredible organization is in the running for a $100,000 donation, but needs votes. Go to their main page and click the 'APX Gives Back' button to vote for this cause!

Tiptoeing Through the Tulips

Today we are lucky enough to get to meet Graham through a compilation of thoughts by his mom Cristin Russell at Tiptoeing Through the Tulips.

Before we begin, for those of you who may not understand the significance of tulips and special needs, you absolutely must go here and read Welcome to Holland before you do anything else. I would dare say that this is the general mantra for all special needs moms and dads, and part of the inspiration behind Cristin's blog. Just click here for a clear picture of how it feels to be the parent to a special child.

NOW you're ready to go and you are in for a real treat. I love the way Cristin thinks and writes. As she told me, she can be 'a little crude,' but I left everything in because it's real and honest, and usually very funny. Her words are a delight to read and she and Graham inspire me to just be. I love that. Enjoy!.........

There are a bunch of significant dates in Graham's little life. The day he was born, the day he didn't die, the day he finally came home. And this day stands out; the day we found out he was losing his hearing.

I was so pissed. I don't like surprises. Despite being warned by the entire surgical team that he was at a 'Very high risk for a significant hearing loss' (due to gentamycin and ECMO.... lots of both), I still didn't see it coming. He was at a very high risk for being dead and that didn't happen so....

He'd made it through that scary first winter with several trips to Children's but no admissions. It was Springtime, he was "healthy" and happy. I walked into that audiology appointment fully confident that his hearing was perfect. He was saying a few words, he loved music....

The test was kind of fun. Graham sat on my lap while the audiologist watched his reactions to certain sounds. It was my first test, I didn't know what normal reactions were, so even after the test, I was shocked when the audiologist told me,

"I'm worried about Graham's hearing."

"Really?"

She jumped right into hearing aids, sign language, speech therapy...

"Really?"She handed me The Folder:

As if your child isn't fucked up enough all ready, now he's Deaf.

The folder was full of helpful resources for raising a child with a hearing loss. Educational options, hearing aid providers, sign language classes. I was still too pissed and shocked to absorb any of it. I got out of there as fast as I could.

I was proud of myself for not breaking down until I was alone in the parking garage elevator. I called my sister in law sobbing on the way home,

"But he loves music...he's talking...the damn barking dog wakes him up... WAHHHHHH!!"

I thought about his speech and knew it was true. He could say "Mama" but "Dada" had become "Baba", he'd stopped saying "Nana", things I thought were just normal baby things were happening because he wasn't hearing some sounds.

I got over myself quickly. On the way home I stopped and got a Sign Language dictionary. I started signing with him right away. I started yelling at him and some sounds came back. Speech therapy started within a month and he got his hearing aids that Fall.

I learned about Deaf Culture.

Learning about Deaf Culture and the Deaf Community was comforting. He didn't have to be the scarred up, tube fed kid amongst all the typical kids. He'd be surrounded by kids who were at least Deaf like him, his other differences wouldn't matter. He'd have Deaf adults around him to serve as role models. He'd speak and sign and hopefully have both the Hearing and Deaf worlds open to him.

I think we're doing ok so far. He has Deaf and Hearing friends. His language is pretty funky but his speech is excellent. He knows more sign than I do. He still loves music.

He asks for his hearing aids and tells me when they're not working.

He likes to be Deaf Kid sometimes and not wear his aids.

He's an awesome sleeper.

He's easy to spy on.

He's wicked fun to sneak up on....

Graham started physical therapy around 5 months old. He HATED it. For two years I dragged him in twice a week so he could scream and yell and not do anything the poor PT tried to make him do. I don't want to say that she gave up on him, but she knew she wasn't really helping him and suggested taking him to Gymboree.

I had never thought of it myself. Her reasons were that the atmosphere would be one of play and not work, and maybe if he were allowed to just explore on his own, he would try to crawl, climb, go up stairs...all the stuff she couldn't convince him to do.

He was 2.5 years old when we started. His PT was right. He made more progress in 3 months at Gymboree than he had in two years of physical therapy. His teacher for the first session was amazing. Graham and I both loved her and we all ended up becoming friends and going on play dates together. We loved it so much I signed him up for another session, this time with a different teacher.

Now, there are those who have a very special quality that allows them to work with children. It's a certain kind of patience, a young spirit, a sense of wonder and excitement that allows a person to relate to children. This girl had NONE of these things.

She was awkward and uncomfortable around all the kids and parents. She stumbled over all the stupid songs. She had no clue how to engage a bunch of toddlers in any activity. She flat out sucked.

Graham had obvious issues. He walked funny, he didn't crawl, he didn't climb, he barely talked. After a few weeks, this dipshit of a teacher came up to me and asked;

"So what's wrong with him anyway?"

coolest. kid. ever.

I almost laughed in her face. I mean, I've had a lot people say a lot of dumb things to me about Graham but, What's wrong with him?? I actually felt sorry for her that she thought this was an ok way to ask about a 'special' kid... then I felt bad for her children.... what kind of example was she setting for them?

And now I wonder.... are any of the folks reading this thinking the same thing? I've never really fully explained the kid.

So here goes.

Graham was diagnosed at birth with a Right Sided Congenital Diaphragmatic Hernia (CDH). A hole in the right side of his diaphragm allowed his liver and intestines to travel up into his chest cavity.

When he was born, he never took a breath because his lungs were being squished by the intruding organs. They tried to intubate and bag him but this was very difficult because his lungs really didn't have room to expand.

He was flown from Burlington Vermont to Boston to be placed on ECMO. (For you nurses out there; his O2 sat when he got on the plane was 62%, during the flight it went down to 20%, while they were putting him on ECMO it went as low as 8%.... scary eh??)

By the time he got to Boston his lungs were badly damaged due to being bashed against his liver and intestines for over 12 hours. His surgeon said they were a cross between tissue paper and swiss cheese...not good.

ECMO is a heart lung bypass machine that circulates and oxygenates the blood to give the heart and lungs time to rest and heal. It comes with serious risks including brain bleeds and blood clots. Most hospitals will only put a child on ECMO once, some don't use ECMO on CDH babies at all.... something ridiculous about the risks outweighing the benefits.

He was on ECMO for 5 days and he looked good enough to come off.

He got steadily worse for a week, and the radical decision to put him back on was made. We made the decision with the assumption that he would die, but his surgeon had convinced us that no matter what happened, he'd learn something that could possibly help another CDH baby.

Graham had surgery to repair a hole in his lung in the ICU before they put him back on ECMO. At first they just bypassed his lungs. Within two days he was in heart failure so they went back in and attached the ECMO cannulas very close to his heart, during this procedure they severred a nerve paralysing his vocal chords on the right side.

He spent two more weeks on ECMO. During this time he suffered two brain bleeds, and a blood clot destroyed his left kidney. He had many serious infections requiring massive doses of antibiotics. The antibiotic Gentamicin is responsible for Graham's hearing loss.

Graham left the ICU after 8 weeks and spent another 6 weeks getting bigger and stronger. Because his organs were stretched and his muscle tone so poor, he suffered severe reflux which he was aspirating into his lungs. Had no suck/swallow reflex... he couldn't even suck a pacifier. He aspirated thin and thick liquids when we tried to feed him.

At three months old he had a Nissen Fundoplication to stop the reflux, had his left kidney removed and had a g-tube placed.

He came home after 101 days, on meds for seizures (oh yeah... he had some seizure activity while suffering a brain bleed), reflux, and diuretics because he was on so much formula to fatten him up.

His muscle tone was and still is pretty low, hence all the physical therapy.

I started to try to feed him by mouth at around 6 months but it never went well. His oral aversion was so bad that he'd gag at anything that went near his mouth. He's been in feeding therapy since he was around 10 months old. He only started eating last fall.

We learned about his hearing loss when he was around 15 months old. It started out mild but has progressed to profound.

Graham with his little sis Dottie

So now you're all up to speed.That's what's wrong with him.

Oh, and he still shits his pants.... now that's wrong.

Thank you to Cristin for your willingness to be so open and honest. If the rest of you haven't had enough Cristin, hop over to her blog by clicking here for more fabulous posts. This girl just never stops cracking me up, all the while inspiring me. I don't know how she does it!

Remember to leave a comment and let us know what you learned from Graham and Cristin. And this will also, of course, put yourself into the drawing for this week's giveaway, a PediEgg. I can't believe how much people love these things. Apparently, you really better comment because the PediEgg is heaven for feet.

Cheers!