
One of the most difficult aspects to parenting Noah is that sometimes
things are a guessing game. While yes, I'm an expert in his care and
needs, there are still some things that I am unable to find a solution
or remedy for. These things that keep me up at 1am, 3am, 5am because
my brain cannot accept that I cannot out-think the problem at hand.
Contributing to my exhaustion as a special needs parent, things beyond
my control often dwell heavy in my mind. It's likely that need that
most all mothers have no matter what ability of child they are parenting
to "fix it." And when we realize we can't we stew on it often until
the end of time, because we cannot accept that there is something that
can't make things better. That feeling I think is simply intensified
when you are special needs parent. My typical child can assist me with
troubleshooting any problem he may have - Noah cannot. A closed
beautiful book with blue eyes that looks at me with wonder - as if he
wishes to tell me all the things I do not know.
Noah lay
finally sound asleep at nearly 10am after being up frequently in the
night, snoring finally peacefully. And for the next twenty minutes I
can listen to him on the monitor without a worry that something is wrong
with him, or that his monitor will trigger an alarm. Those twenty
minutes for me to rest, to put my guard down, to take a deep breath so
that when he does awake I can then again try to figure out why he is now
grinding his teeth (again), and why he's snorting when he doesn't have a
cold, why his body still wants to shift to the right when he's in
adapted seating devices, why his head control can be so fantastic one
day, and terrible the next, why he's now decided some of his favorite
foods are no longer desirable and my constant quest to feed him fast
food because right now that's what motivates him to chow down so he
doesn't lose weight and maintains a caloric intake that he needs for his
tiny little body.
I am hoping that maybe an acupuncture
appointment I made today will assist Noah with his bruxism and increased
sleeping difficulties. He tends to respond well to holistic forms of
treatment favorably - I have my fingers crossed... maybe it will work?
Maybe it won't.
I've also started the process of obtaining Noah
a
Dynamic Movement Orthoses (commonly referred to as a DMO), it is a
specialized suit made in London customized to Noah's movement. A series
of 40 measurements are taken, it's notated on how he moves and what panels might assist him with discouraging scissoring of legs, and trunk
support, it takes about three weeks to make, it's then shipped to
Boston and then Boston ships it here to us. It's rather quite a
process, and requires Medicaid funding. Generally, however Medicaid
funding is a bit easier when you are dealing with Orthotic and Speech
needs than other types of Medicaid funded codes. So, I don't expect
that Medicaid will block this for Noah - but one never knows anymore
with them so I hate to get overly confident.
The goal with the
DMO is that it will give Noah more body awareness or something called
proprioception. It is believed that with increased proprioception
feedback that a child like Noah can use their body
more effectively and with that positive compression feedback help the
brain to build pathways to strengthen trunk, balance
and posture. I am hoping that it will also assist him at hippotherapy.
While he has had some really great sessions, he's also had some equally
concerning ones - most recently being the last. If the volunteers on
staff on any given day aren't familiar with Noah it can often lead to a
nail biting session for mom as I watch others not be mindful of his head
and it snaps completely backward without someone assisting him or
pushing it forward, something I do worry could lead to an injury. Or
his trunk can collapse completely inward and he becomes a curled up ball
on a horse. Other times volunteers are great and understand exactly
how they must hold him - but you never really know from week to week who
the volunteers will be. Since I can't train a crew myself my choices
are terminate a therapy that isn't consistent with his needs (that he
also happens to love and adore), or see if there is any way that I can
help make him stronger so he's not at risk with people who have just met
him for the very first time and don't know how strong and unpredictable
his tone can be.
 |
Example of how a DMO can assist with posture/tone |
Noah has also outgrown his S.W.A.S.H.
Brace, so I had him re-measured for a new one. I'll be honest he's not a
complete fan of it, so it's use is often limited. He hates things that
restrict him and prevent him from what little movement he does have.
He certainly wouldn't tolerate it while laying on the floor as it would
prohibit him from rolling room to room something he insists on doing.
Now that Noah is older people will walk into my home often be critical that
he's six and still primarily laying on the floor, but the feedback he
craves and desires is from being on the floor. He is not yet proficient
in his power wheelchair and for him - freedom means being on the floor
so he can get around in his own way. To take that away from him and
force him to sit in a wheelchair all day at this point in time would be
cruel.
 |
S.W.A.S.H Brace |
So I expect that the S.W.A.S.H. will primarily be used on
trips to the zoo or recreational activities where he is out and about in
his wheelchair. It's not always perfect, it's not always what the
experts suggest and recommend for daily usage, but we're doing the best
we can do. It has always been our goal to give Noah a happy life, and
not force him into things that crush his spirit and cause him to be
distraught or upset.
I'm also trying to work on Noah's current
wheelchair challenges. We are really excited about Noah's new Convaid Trekker,
but it needs some essential accessories before I can actively use it
with him in public and with transportation. I really hope they come
soon because I'm at my wits end trying to make the model I'm using
currently work. I hate the harness which chokes him when he slides down
(I'm attempting to beg the DME to order him something else but that
could take up to 90 days or more) and I don't have $239 out of pocket
just for one accessory to buy it on my own. I'm always at the mercy
primarily of people's goodwill or Medicaid. I always know that I'm up a
creek otherwise. I'm also trying to get a piece ordered for Noah's
Leckey Mygo. Noah's right arm wants to get stuck inbetween the lateral
and then he twists it which is starting to distort how he carries that
one arm. Troubling for sure, because I think I can fix that. But I
need a lateral band that goes across the chest which would make it
impossible for him to get his arm stuck inside the lateral piece.
Something I also have to wait and see if the DME will obtain for him through insurance.
I
also am working on trialing the Ottobock Jockey - something that will
spread Noah's legs in a seated position and I hope will assist with discouraging hip migration. That will arrive June 9th, I
hope that the DME will give me about 30 days to work with the device so I
can see it's pros and cons not just for Noah but for other children
like him. I've become rather an equipment addict because I know that
equipment often holds the key to a child's success, independence,
comfort and personal growth and ability to participate in the world
around you, it must be comfortable, safe, functional and meet each
child's individual supportive needs. And some equipment out there in
pictures looks great and looks perfect until you get your hands on it
and realize a vendor's idea of "microfiber soft upholstery" is not at
all what real microfiber is and it will send most kids to sensory
meltdown land. If I like the product then the next hurdle is a Medicaid
request, and I have to then balance Noah's current needs with a Mygo
versus a Jockey as Medicaid likely wouldn't fund both within a 3-5 year
time span, and they would in Noah's world serve two different
functions. Noah has some growth left in his current Mygo but he won't make it
another three years in it. Sad Medicaid doesn't always recognize that
each piece of equipment has it's own individual purpose in Noah's day -
especially for children who are as physically involved as Noah is.
 |
Ottobock Krabat Jockey |
I
just keep troubleshooting because it's really the only option I have.
Maybe I'll get it right.... maybe I won't. But if there is anything
behind the power of intention then I'll keep at it.
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.