Thursday, February 11, 2016

Return To Warm Water Therapy

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Nearly a full year after Noah's former warm water therapist retired, her replacement was hired.  We always have some reservations when starting up with a familiar therapy but with a new therapist. You never know what to expect and if Noah will welcome the change and accept another person into his routine.  Our first session went well, Noah seemed open to the fact that he was experiencing a different therapist in the water.   I was worried that child before him would cause him a sensory gag or sensory challenge.  Last time Noah had a child that came after him, but not before him.  This time it is the reverse.  Noah's sensory challenges to other children that he is unfamiliar with or that he feels gets too close to his personal space is typically a gag and vomit trigger.  But, staff and the child's attendants do a great job of understanding Noah's challenges to others and I'm so thankful they aren't offended by the knowledge that Noah often doesn't respond well to change, strangers or others too close to him. 

I'm trying to get used to not writing therapy notes during Noah's session - something I did for five years prior.  Now I'm just mom watching Noah do therapy, without secretary duties.  Not that I necessarily minded, but the routine is different for me too.  Some of what we are doing exercise or therapy wise is different, but in a good way.  Noah seems to be responding well to doing new things.   Our momentum started off slow.  Shortly after our first session, there was a mini accident in the pool which caused it to close for a few weeks until they could get the chlorine levels back to normal.  So today was our second time back.   Noah's new therapist is easy going and relaxed, and super helpful. 

The current bath seat however at pool therapy is an Otter and it's really rough mesh fabric is wreaking havoc on Noah's skin.  That is why we had to ditch all products that we have here in the US that are similar.  Noah had a Manatee bath seat at one point and a Columbia Bath Seat.  Both from that standard mesh that vendors use that irritate his skin and cause instant skin breakdown, abrasions and rash, and also sensory wise drive him to the moon.   I asked for a really long time for the current shower chair that his therapy center has before they finally ordered it to help him and other children like him who needed it.  

There is this little voice that sits on my shoulder that says... Stacy... you need to reach out to the therapy school and attempt to explain to them that long term this shower chair with terrible mesh and a broken wheel isn't going to cut it and ask them to order something that is hygienic for all children to use, soft for sensory issues, a bucket seat design so that children can't arch out of it... that isn't made from mesh... and oh it costs only around $3,800.... yes they'll like that part, oh and it comes from the UK.   The incredible T-MAX Shower Chair. 

Speaking of which we asked to access emergency funding through Noah's county services.  After documentation that Noah needed the T-Max and why from his local DME, and treating physician, his caseworkers consented to ordering him one.  I'm reserved on celebrating that a T-Max will be in Noah's future soon because I haven't received email confirmation saying it's been ordered, and likely because items and resources for Noah have been so hard to access lately.   I think I will reserve celebrating until it actually arrives and is delivered to the house.   These days seeing is believing.

No, Noah's T-Max shower and toilet chair won't be something that I can get from our home to warm water therapy, so the therapy school would indeed need to order their own.  While his therapy school hosts a large yearly fundraiser in March of every year that generates a lot of funding for the school, my gut instinct says they will be really resistant to my suggestion that they purchase one - just given how hard it was to convince them that holding Noah in our laps to wash him after getting out of the pool was a growing safety concern with a child who is no only slippery when wet, but loves to attempt to arch out of your arms at the same time.
Yet, I don't know how to quietly just put my tail between my legs when it comes to Noah, so in my mind I'm already going over the best way to approach asking the therapy center to invest in a better and safer product to bathe children with special needs after they get out of the pool. 

Noah's HCBS Waiver approved the funding of two life jackets for Noah at the end of the year.  One that allows him to be upright to some degree and one that allows for him to lay on his back.  We've attempted and trialed a lot of adapted swim devices with little success.  Noah's high tone in literally every product we've tried he could throw himself backwards with his tone and dunk himself.  Frightening for a parent when you know you have a child that is a high aspiration risk.  I was cautiously optimistic about the success of these specialized life jackets that are manufactured in Canada, simply because nothing else has worked.  The price tags on both weren't great, but there are really no good price tags on anything Noah needs.
We attempted the life jacket that allows him to float on his back first, that one seems really stable and great, followed by the one that I thought would hold him upright.  But that one makes him look kind of like an unsteady bobber in the water and I feel it's more unpredictable than the back float, and likely without constant supervision and occasional correction that Noah would find a way to roll in it face down.  I think they both will be helpful for Noah.  Both devices require two hands to put them on Noah, only because of his lack of independent head, neck and trunk control.  Overall, I would feel comfortable recommending both of these products to other special needs parents who have children who are severely disabled and often need all available support options in a product.  While, pricey I feel the level of safety and the design of the product is good.  For more information about these life jackets click here.
Of course these new devices add to the gear I tote into therapy; a wheelchair, a folding therapy mat, a mesh bag with two life jackets, a pool bag with a change of clothing, soap and supplies... and of course the extra things like a jacket when it's cold.  And there are no handicapped buttons I can push at the door.  I have to find a way open he door with all of this, hold the door with my foot and push Noah through first in his wheelchair, pray all the gear I have squeezes in fast behind me, so that I can enter a code for the second set of doors to open so I can also get through those... I'm sure to others I look like a complete mess with just getting into the building.  Of course I wish I had more hands.... or help or both.  I manage however, making what really feels impossible become possible. 

It's like that saying "if it doesn't challenge you, it doesn't change you.  Swim harder."


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.