Below is our journey to adapt water activities for our boy, Blue.
There is no way around it.  The water is tricky for most special needs parents. My son has unique challenges that make the water tricky.  Essentially the word is: spastic quadriplegic.  Although that isn’t exactly what he has, it looks a lot like it.  Believe it or not, his catastrophic disability comes 100% from jaundice – newborn jaundice. For more on his condition read Kernicterus. If you want to read about how it happened, read Being Rearranged.
So, the water is tricky to say the least. We’ve thrown a LOT of money down the drain trying to find something that kept him afloat.  Most failures seems more like drowning aids. We’ve done this, not because we have money coming out of our ears, but because we badly have wanted to find a safer and easier way for our whole family to enjoy the water. I know it looks ridiculous to spend so much on so many things. But, if you know the special needs equipment world, you know that you are usually talking about thousands of dollars for medical equipment, and if not thousands, definitely hundreds.
In the end, we’ve figured out some reasonable solutions for:
- The Pool (special needs)
- The Pool (for typically developing non-swimmers)
- Boating, Kayaking etc (for special needs)
As always, keep in mind that I am no expert and this is not medical advice. If you, or someone you loves can benefit from this post, please keep in mind their individual needs and consult your physician and or therapist before trying any of these items…and of course NEVER let your child use them unattended!
Summer 2013 update:
You can read below about where to buy these, but this year we are still with the same foam collar and a new life jacket from http://www.pfd-a.com . Â My boy wiggles A LOT and quickly figured out how to get his mouth under water in the life jacket…so it’s not something he could be unsupervised in or even hands off…but when boating it would certainly increase his chances of making it through a boating accident.
The foam collar provides enough support for supervised semi-independant use.  (We  stand right by him and keep our eyes on him, so it’s a bit more hands off. )
His able-bodied sister was wearing the collar for fun! Â They always want to be like their big bro!
WHAT HASN’T WORKED FOR US
(While these things burned a hole in our wallet it was NOT because they are bad products, they just were not suitable for our son’s specific needs):
There is also a swim wedge with a strap that we spent another $100+ on with no luck. (can’t find an image.)
OUR SOLUTION
It cost us $35 (although the price went up to $70 in 2012)!
85375 WATER CELLâ„¢ FLOTATION COLLAR
http://watergear.com/aqua_acc.html
(800) SWIM GEAR (794-6432)
ANOTHER OPTION FOR SMALLER SPECIAL NEEDS KIDS
http://www.waterwaybabies.com
FOR CHILDREN WITH HEAD CONTROL LEARNING TO SWIM
OTHER USEFUL SWIM GEAR FOR SPECIAL NEEDS
- Noodles – My boy can only wear the swim collar so long without getting a bit gaggy, so when he tires we make use of these noodles, wrapping them under his arms and our own.
- U type seats
- http://www.gandermountain.com/modperl/product/details.cgi?pdesc=Swimline-U-Seat&i=38709&aID=506AD3&merchID=4006
- We are using this one this year and love it! Â It’s certainly not perfect, and requires constant supervision, but adapted with noodles or tying the end of the u together makes it a pretty decent solution.
- Blue loves this, and kicks all around the pool
- Lounger
- http://www.gandermountain.com/modperl/product/details.cgi?pdesc=Swimline-SunSoft-Island-Lounge&i=50042&aID=506AD3&merchID=4006
- This one is great b/c it actually has multiple inflated pieces that interlock, so it doesn’t bounce you off like a water mattress.
FOR BOATING AND KAYAKING
I found these. Again, not something he could use independently, but much better than any alternative I’ve found. They are made in Canada.
a rearranged life 
9 responses to “To SWIM: Way Beyond Water Wings”
I NEED A LJ-A LIFE JACKET FOR CRUISE.. I CAN’T FIND. (BULK SALES, I ONLY NEED 1) I HAVE APHASIA, THIS IS A COMMUNICATION DISABILITY CAUSED BY AN INJURY TO THE BRAIN. IT IS NOT A LOSS OF INTELLIGENCE. I UNDERSTAND EVERYTHING YOU SAY BUT I DO NOT SPEAK. I CAN COMMUNCATE WITH YOU BY WRITING.
I AM A STROKE SURVIVOR. PLEASE EMAIL ME? PLEASE? I AM GOING ON THE CRUISE WITH MY GIRLFRIEND ON JAN. 13,2013.
I’m so sorry, Michael! I responded to you on 12/26, and I just realized that it didn’t go through. I’ll find it and resend!
If I remember right (it’s been a while since I ordered it) I emailed (used contact form) or called this company in Canada and bought ours directly from them.
Their contact form is at the bottom of this page: http://www.pfd-a.com/#lja
Enjoy your cruise!!!
Miriam
Miriam- my company sells the Water Gear collar you mentioned above- I absolutely love the photo of Blue in the collar with his sunnies on and I wanted to ask your and Blue’s permission to use on our website here and in Australia. I completely understand if you don’t want to- but I just wanted to touch base. Blue looks very comfortable in that shot! I look forward to hearing from you and hope you and Blue are enjoying the pool now that it’s warmed up! Kind Regards, Electra (www.theraquatics.com)
Thank you for asking Electra! You are welcome to use the pic!
Hi, Miriam!
Thanks for a great swim write up on what’s working for your son. (Wish I’d seen it before making all my recent internet purchases! 🙂
My son suffered a brain injury at the start of last summer. He’s now quadriplegic and suffers from severe spasticity. He just attended a YMCA camp and the got him into the water using some devices custom created by a local man (who I hope will ultimately bring them to market … very clever work). Now looking for ways to get him back in the pool (which he really loved prior to his accident) and so I’ve been searching and searching.
Keifer has a swim float collar that is filled with foam beads https://www.kiefer.com/kiefer-neoprene-float-swim-collar-products-265.php?page_id=255 . (I think I’m going to wish I’d gone with the one you have as it looks so much more substantial, if less comfortable.)
I also bought a Kikodo mattress with beads that looks a little more stable than air mattresses. (Sort of looking to use it as you do the noodle, which I’ll have to go find online!)
I looked that the chair you have but went with a Swimways Kelsyus Chair thinking it may be a little more stable … given he has no stability of his own. And also a cheap floatation belt from China. If any of it works well, I’ll let you know!
Like everything else we adapt … experimentation is to be expected. But it’s great to get ideas from other parents.
One other thought for others who find your site … as I surfed a found a lot of things that I subsequently found for less on ebay, Amazon or Walmart. So worth price checking it after you find something interesting.
Best to your family.
n read below about where to buy these, but this year we are still with the same foam collar and a new life jacket from http://www.pfd-a.com . My boy … lijackets.wordpress.com
Hello,
My outdoorsman of a Dad (who is also a quad) is turning 60 in March. I am looking for something for him to do outside. Do you have any suggestions?
I too have a sibling that was injured at birth by the doctor that was drunk!!
I’ve been looking for a life jacket for her. She loves the pool so we got her one. She is now 65 years old and wasn’t expected to live past 12. We typically was thinking that a jacket w/a neck float wud work but not sure. She is completely incapacitated w cerebral palsy. We r also having trouble coming up w something to get her in the pool. So if u have any suggestions that wud surly b appreciated. Good luck to u and yr family. It takes a real dedicated family to take care of the handicap person, but I wudnt have it any other way an I no the good LORD will reward u for it.
Sincerely,
Cynthia