Thursday, July 17, 2014

Rear View Mirror

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We made the decision to venture out to the Mopar Block Party tonight.  It's something we did for years before Noah was born, and several times after.  The event that pretty much kicks off the three days of the Mile High Nationals of NHRA drag racing.  I don't think Chris and I ever completely abandoned our love of racing and it's always been a fun night, to walk around look at cars, obtain autographs and talk to drivers.  
NHRA drivers signing autographs

I remember taking Noah the very first year.  He was 6 months old, and it was a completely nightmare for him and for us.  Noah was never a good car traveler.  He got so upset on the way home.  We figured like most parents he'd just cry it out.  We had no idea that he was causing himself to vomit over and over again, while hysterically crying, grunting, snorting, all the while serving for the perfect storm for aspirating on his vomit.  The entire backseat was covered, and he was so young he was rear facing in the car, so we didn't really know the gravity of the situation until we had reached home.   We felt terrible.  It was the last time we ever contemplated the cry it out method for anything.  We quickly realized cry it out equaled life-threatening.  If Noah so much as even whimpered we pulled over until he stopped.  To say the least we didn't get very far from home - if at all because of that. 

You'd think we'd be crazy to do it again after that first experience with Noah, but we've learned the art of assisting Noah.   While one person drives, the other is on Noah duty.  Coming to his rescue if his movie ends and he needs another for self-soothing, if he gets upset, if he needs anything at all.   I rarely, if ever travel long distances alone with Noah just for that reason. 

Over the years the Mopar Party has changed a bit, now there are not that many cars and food vendors have been replaced with beer stands forcing hungry people into nearby restaurants.  The music is just as loud, but this year I didn't find it wheelchair friendly.  People were just oblivious to a wheelchair trying to navigate the crowd, sidewalk access remained blocked not only by vendors but also by people who just gathered there refusing to move   Lifting a wheelchair over curbs isn't all that fun.  And Noah was agitated that people would not part for him like the Red Sea blocking his ability to move anywhere.   

We wound up walking to the creek and abandoning the block party altogether.   The creek was peaceful, but the water was running high so you could hear the rush and force of it hitting the rocks.  I used to walk that creek a lot, especially when I used to work in that area so many years ago.  A different lifetime.  It feels like looking in the rear view mirror.   Everything feels so different.   Stores, businesses, and restaurants have come and gone.  As much as you wish things stayed the same they just don't.  Life goes on without you. 
Walking Clear Creek

This may have been our last year going - I don't really know.  Chris loves it, and I know before our boys were born we always dreamed they'd share our love of cars and racing.   But the reality is Noah will never be able to race, we can't even comfortably take him to the Mile High Nationals in excessive heat with no suitable shelter from the sun, and it's doubtful we'll ever be lucky enough to obtain tower seats behind the Christmas tree (race language for the lights that count down before you punch the gas).   And we're a family that really believes in staying together.  Our belief has always been, no one gets left behind.  As much as you once loved something in your life, occasionally you have to say goodbye to it and that's okay.


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

Tuesday, July 15, 2014

Why I Am Now "That Mom"

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No matter how you try, inevitably you will look backwards when you look at your life with a child has special needs.  

There are some really difficult parts to looking in the past.  Some parts of exceptionally haunting and they never go away.  I can still find myself up in the middle of the night listening to Noah breathing and I can be transported back to the NICU listening to those beeps and watching his oxygen saturation and heart monitor, my stomach sinking with that part that made you feel like you could vomit and pass out each time you'd hear an alarm sound.  Never knowing if this was the last breath Noah would take. The smells are still there too.  That darn sterile smell combined with new baby blanket scent, and I can still taste the tears that I cried.  The salt and the pain etched in my soul that will never ever heal properly.  I've accepted to some degree I will always be the walking wounded.   It is impossible to live through that kind of living nightmare in your life and not walk out of it a completely altered person.  

And at 1am after you've relived those memories that linger, You start evaluate how your life was before and after living through that moment in time.

Sometimes I think about the person that I was before Noah.  I started out as this super quiet, easy going person.  Who hated conflict.  I mean hated it.  I'd avoid it any cost and would rather walk away from something that confront anything that could start tension.   I'd never debate how I felt about any given topic, I kept my opinions and feelings much to myself.   You certainly would have never known where I stood on any given topic as I was selective with personal disclosure.  I never found anything worth a battle or a challenge of any kind. 

Then you look at today... where now I have gained that reputation as "That Mom."  You know... "That Mom,"  that every equipment vendor shutters at the name of, that some therapists roll their eyes at, that suppliers and vendors dread because they know I'll call them out for tardiness, that caseworkers don't want to deal with because I challenge them on the "rules" that they make up along the way.   The mom that no one really wants to deal with.  Because you aren't afraid to challenge them on everything if need be.

How did I get that way?  How did I go from the introvert to the extrovert? 

It started out initially from people pushing my special needs buttons one too many times.  You can only lie to a parent so many times, you can only find so many ways of avoiding helping their child so many times, you can only fail to do you job one too many times before "That Mom" is born.  Sometimes being a loud voice is the only thing that will get anyone's attention.  And if that means you have to step on some toes and deal with supervisors and managers or even government agencies or politicians... then you do it.   I can guarantee you that no one is losing sleep over the fact that they aren't helping your child.  It is just a job to them.  To you this is about your child's life.  This isn't about how to Win Friends and Influence People.  Although as a side note that book authored by Dale Carnagie has good value.  However,  I'm certainly really not all that concerned with arousing resentment or making people like me along the way, and when dealing with the government system specifically I am convinced there is no way to win them to my way of thinking.   My focus is on making sure Noah is taken care of and that others are doing the best job the they can to assist him, and in the end if that doesn't make me very popular, then so be it.   

Trust me, I'm not the only one of my kind out there.  There are lots of us out there. 

Now my "That Mom" reputation should not be confused with being a difficult person to handle or get along with or even being a genuinely likeable person.   It's simply the mom that calls you out the balderdash you feed her.   A special needs mother's biggest pet peeve is when you are working against her, and not for the benefit of her child.  Without question it will make us put on our combat gear each and every time.  We are hardly hesitant to wage war on those not doing their jobs or are standing in our way.  If you're doing your job, and doing it well you'll never have to worry about us barking up your tree. 

Personally I wear that title as a beautiful badge.   It means that I'm doing my job well as a special needs parent.  I'm proud that I am "That Mom."  Because it means that I will insist that you do right by my child and do your job as a professional working with those who have disabilities. 

Although I'll admit I am still nursing my sadness from losing the fight for a piece of equipment that would have really made a tremendous difference in Noah's life.  I know that I must carry on and be "That Mom."

(If you feel led to help Noah on his quest to crawl please feel free to visit his online fundraiser here):


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

Thursday, July 10, 2014

Never Good Enough

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Be still my aching heart...

After five and a half years, I've done my best to stand tall - that tree you cannot shake.  That mom that never stops fighting... advocating... trying.   But it doesn't matter how hard much I struggle, how hard I work, the countless hours I spend drafting paperwork, writing emails, all the phone conversations, coordinating therapies and in the middle of it caring for two very young boys, one of which requires hands on care for all of his daily living needs.

I project that faith and confidence that I can conquer it all.  And time and time again I stand defeated.   I find myself thinking of ways to conceal my pain.  I purposely avoid discussing my feelings, the difficulties each day brings.  I know that if I openly poured my heart out there, I'd sound like that broken record that plays my heart is bleeding over and over again if I went down that road.   And I'm Noah's mom.  I'm the strong one.  The one everyone looks to for help, support and advice.  I am the rock.  I'd let everyone down if they knew their life-line was often times a crumbling mess behind the scenes, having her own pity party. 

The fight for the Krabat Pilot Crawling device has officially come to an end.  I submitted a nearly 20 page Motion for Reconsideration with 11 Exhibits.   I spent off and on two days drafting it.  My last chance for Noah.  I poured all the positive energy I could find into it.  Noah's win was reversed on a "safety" question of the device, and I spent so much time documenting safety, right down to calling Norway to get all the safety testing results, trials and FDA approval documentation.  The State did not to even file a Response to my Motion for Reconsideration.   They likely knew they didn't have to respond.  The decision was already written on the walls before I even had a chance to type my first word.   It was denied on the basis that I failed to demonstrate "a showing that the Final Agency Decision was based upon a clear or plain error or fact of law. "  I dedicated 10 months towards fighting for a crawling device opportunity for Noah.  I even watched that precious child get up on all fours for the first time in his life two weeks ago and said yes baby momma's going to come through for you so you can take off....

And I failed.

I don't know if Noah will ever understand how truly sorry I am for all of it. 

I am not sure what to do next.  My fundraising efforts have seriously sucked lately.  I don't have time to bake brownies, or after all make potato salad.  I'm doing my best to try to find a foundation or grant to help me, but I've used so many along the way, that it is now like finding a needle in a haystack. 

In the middle of all this I am also trying to find a way to convince Medicaid to fund Noah's bathroom modification.  Even though it's listed as a covered benefit under his Medicaid waiver, a "luxury" they all say.   

NEWSFLASH *** My life is anything but luxurious ***  Although I love Noah with every fiber of my being, having a child with such severe disabilities is the hardest thing I've ever experienced in my life.  And I've been through some really hard times during my life.   And this hands down is the hardest thing God has ever laid before me.   I try to bring grace, tenderness and incredible love to each task before me, while doing my best not to complain about the hardships.

I'm not even sure where to start with discussing what all is starting to be involved in a bathroom modification request, other than to say that I already feel very defeated, and I haven't even touched the surface yet on all I'm going to have to draft, research and submit.   The writing already seems to be on the wall for that too... you just wait on those words... DENIED.  There is no positive feeling about any of it.  I've just done this dance way too many times to know the probability of how it will end.   In a way it makes me feel so stupid for trying.  It shouldn't be this hard to provide for Noah's needs.   Society has this misconception that the government just provides for children like Noah.  If you could only feel my tears at this moment and really understand what this is all like.   Have a firm realization of what our reality is with a child with special needs.  Everyday is an uphill battle and I'm always going to war on Noah's behalf.  In the end it's so cliche that the harder you try, the harder you fall. 

"The human spirit is never finished when it's defeated... it is finished when it surrenders."  Ben Stein.


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

Wednesday, July 9, 2014

Contributing to Nothing

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You may have heard in the media recently about a Kickstarter campaign recently to make Potato Salad.  For those of you who aren't familiar with Kickstarter, it is a crowd-funding site geared towards raising funds for creative projects.   For instance I could say that I want to make a documentary about what it's like to raise Noah, make my Kickstarter with a hypothetical goal of $100,000 to produce it and sit and wait for people to throw a donation towards my creative idea with the hopes I meet my hopeful financial goal.  Along the way I can offer incentives for your donation.  I'll give you a pin with Noah's picture on it if you donate $10, and if you donate $1,000 I'll give you an autographed copy of my video signed by Noah himself.... that kind of thing.

While I'm sure there are some great inventions and ideas just floating out there in cyberspace, this idea that the Potato Salad Campaign was listed at $71,000 (now adjusted back to $42,000) towards a raised hopeful goal of $10 is starting to stir up some valid feelings for special needs families that are often primarily dependent upon donations and fundraising methods to cover uninsured therapy, medical, equipment, home modification and handicapped accessible vehicle costs.   While many special needs fundraisers find some success, others might find a handful of help, and some other fundraisers go unnoticed thereby being completely unsuccessful.  But rarely if ever will you find a special needs fundraiser that even gets close to $42,000 and currently growing in success at this very moment.

As a collective society, we're totally messed up.  Clearly if you stack any medically fragile child up against making potato salad and potato salad wins, we have a big problem.   People would rather contribute to the idea of someone wanting to make potato salad than putting hard earned dollars towards making a difference in someone else's life.   You think it would be an easy decision to make.  Contribute to an absurd online fundraiser or do something life changing.   And at the end of the day you can say what?  I gave money to some dude on the internet to make potato salad?  Or do you want to wake up in the morning and say you know what I gave some help towards a child in need.

I've heard the argument lots of times before.  Who do I really know that I'm donating to needs it?  What about fake fundraisers with children that don't really need it.   Maybe there are a few scams out there, but I can tell you living this life that most all of the pleas for help that you see are very real and very valid.  If you are willing to throw money at potato salad then it shouldn't matter to you if you happen gamble on a special needs fundraiser and not personally knowing the child or family in which you are donating to. 

The internet is full of buzz...
"You're helping this guy live his dreams"
"He's funny and charming"
"He promised us all a pizza party!"
"He's a hero"

So that's what we're missing when we ask for people to make precious donations towards something our children need that we can't otherwise obtain without generous and loving donations?  Last time I checked all of our little special needs children were heroes.  You are most certainly helping these children live their dreams.  Our children are both funny and charming and bonus come with a multitude of other amazing characteristics.  And I'll promise anyone a pizza party if you help my child with special needs.

So why potato salad?
Noah's Fundrazr started 6 months ago, continues to sit at zero donated dollars


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

Monday, July 7, 2014

Think Before You Park

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After driving up and down a 4 level car garage for over a half an hour just to find a parking space of any kind, I've had my fill of abuse of handicapped parking spots.  1 out of every 2 cars didn't possess a handicapped parking plate or tag.   And the parking space I finally wound up in was completely inadequate for unloading a wheelchair or needing room for a 4 foot ramp.   But it is all I could work with because of the growing trend in everyone thinking they are all entitled to these handicapped parking spots.

Invisible versus Visible Disabilities:
As a mother who is highly involved in the special needs community, I have a high level of respect for all disabilities regardless of diagnosis, condition and physical or cognitive abilities.  However, I think this invisible disability thing with handicapped parking spaces is just out of control.  Sure there are invisible disabilities, but not when it comes to disabled parking.  Disability parking spaces have stringent guidelines that provide for mobility problems and challenges.   These days anyone can say they have an invisible disability and find an enabling doctor who is tired of hearing about how their migraines affect them walking into a store and sign off on it.   I have issues carrying and transferring a severely disabled child with very little sleep that often gives me sciatic nerve and back pain, but that does not make me disabled.  Not at all.  Doctors really need to start cracking down on those who need these spaces from those who are simply whining, lazy, hypochondriacs who hide behind the label "invisible disability."  These are just some types of invisible disabilities:  Diabetes, dyslexia, hearing impairments, sleep disorders, chronic pain or arthritis, and post-traumatic stress disorder (PTSD).   And yes, people with these types of conditions are going to think that they need to park in handicapped parking spaces.

Here are some common things I hear when it comes to the argument why invisible disabilities should be entitled to handicapped parking spaces:

"I need to conserve my energy"
"I could have a seizure at any time"
"My child might run from me."

It is astonishing that someone who needs to conserve their energy feels the need to park in handicapped parking, but has the energy and physical capabilities to walk three miles around the zoo, showing no signs of exhaustion.  Yet we're completely supposed to accept that person needs to conserve their energy and can't possibly walk five spaces more in a parking lot to the front door?  Yes you might have a seizure in the parking lot, you also might have a seizure while driving, or in the check out lane.  You are taking a handicapped spot from someone who doesn't have a "maybe" situation attached to their condition and is always confined to a wheelchair.  I hear from parents of Autism frequently... my child might run from me.  Yes, well so does my three year old typical child, therefore I use a toddler leash (which are also made for all ages of children with special needs).   Having a front row parking space does not guarantee that they are any safer than parking 2 or 3 more spots away from the front door of an establishment.

I could wake up tomorrow, illegally use Noah's parking tag leaving him at home with his daddy and claim I have an invisible disability while running into the store just because I dropped Noah's wheelchair on my foot.  It's that simple.  And completely that wrong.  And this kind of abuse is happening all the time.  When do we stop people who clearly have zero problems with mobility feeling like they are more deserving to take a handicapped parking space than from someone who really needs it?   Everyone feels so entitled to these spots that the people they were truly designed to serve cannot access them. 

Temporary Conditions:
"I sprained my ankle mowing the yard.  Therefore I am entitled to a parking spot until I feel better."
"Broke my leg in a skiing accident."
"I'm pregnant and my feet are swollen."
"I'm overweight, I get winded easier."

First, it's illegal to park without a handicapped license or tag regardless of your temporary condition.   And a disability is a permanent life altering condition.   If you can walk the mall with your pregnant swollen feet then parking 10 feet closer to the door isn't going to help you any.   Putting your feet up will and finding some great compression stockings will.   I know from personal experience.  Although I feel bad you broke your leg having a good time, doesn't mean you need to park in handicapped at your favorite restaurant while you brag about how you acquired your injury.   And so what you sprained your ankle mowing the yard,  doesn't qualify you to take a handicapped spot so you can limp your way through the store.  And if you are overweight a bit of walking will likely do you good. 

Borrowing a License
Just because your Grandpa has a handicapped parking tag after a car accident left him paraplegic and you're going to a concert that will be jammed packed with very little parking does not mean you can legally borrow the parking tag.   This unfortunately seems to be a growing problem.  If Noah is not physically with me, I cannot legally park in handicapped parking.  The license is in his name, and without him as a passenger I am entitled to one big fat ticket.  I can walk.  Noah cannot.   If the person who's name is on the handicapped license or attached to the tag and is not with you, it is illegal to park in handicapped parking.

Just Plain Lazy
I'll only be in the store a minute.  No one will ever notice.
This is video is a disturbing example of that kind of arrogance and how that disregard for those who need handicapped parking spaces are impacted by the ego and inconsiderate actions of others:

Look at my New Ride
I just bought a new car, it deserves a front row spot so no one hits it with a grocery cart. 

True story, that really happened.   A young lady in a store, bragging about her new car that her brother bought her as a gift free and clear, describing the make and model of it.  You are taught to be respectful and happy for the success that other people find in life.  You congratulate this stranger on their new wonderful gift only to find that the exact car that was described to you is sitting without a license or tag on your way out to your car. 

And don't even get me started on the new proposed handicapped wheelchair logo with a figure that implies you have the ability to stand and get out of that wheelchair.   Why change the logo? To make people who are literally stealing these precious spots from people who truly need them feel justified in doing so?  These days everyone seems to think they have an invisible disability.

Ever wonder why handicapped parking spots have a loading zone, and curb cuts and access isles?  Here is a great video that explains all of these features and why they are so important for those with visible disabilities.

You may not realize that wheelchair users also happen to travel in a blind spot, below the field of vision of rear view mirrors, often going unseen by drivers and even pedestrians.   Here is an informative video about a wheelchair user and his need for handicapped parking spaces.

Think before you park again in a handicapped spot that is much needed by a wheelchair user.   And do your part to stop the abuse.  Don't be afraid to confront an able bodied person who is jogging into the store, or a car that doesn't have a handicapped tag or license plate.  If they are someone who accidentally forgot to post their tag in the window they'll likely appreciate the fact you cared enough to intervene and patrol these spaces on their behalf and for others like them.   And if you have extra time call your local law enforcement agency so that deserving tickets can be issued.   We all can play a part in starting to take action to preserve handicapped parking spots for those who truly need them.


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

Sunday, June 29, 2014

Your Special Needs Child is Spoiled

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We held a garage sale yesterday.  It was likely the first time in my life where I separated myself from those sentimental feelings that prevent you from parting with possessions.   I've been keeping a lot of things that I don't necessarily use or need just because I associated them with a memory I wanted to hold onto. 

But before you know it memories start to add up and so does your basement and things just gather and sit, collecting dust and taking up space.  So I tried not to think too hard about what anything meant to me and said "self you are not using this, you do not need it, time to go."

Easier said than done until you get to things like Noah's life-size bear that I bought for his first Christmas at Sam's Club that nearly cost me $60 with the hopes I could use it to teach him to sit independently.   Stuff it in a bag and keep going I told myself.  And up the stairs the bear went and out into the garage.  Wasn't even truly sure how I'd feel about selling my childhood pink Huffy bike that I nicknamed "sweet thunder,"  but there it sat too in close proximity to the bear.    A piece of my childhood and a piece of Noah's side by side.   Luke wasn't exempt either, out went a rocking horse that we bought last Christmas that he quickly outgrew.   Luke watching from the living room window, obviously distressed about seeing his horse for sale, so we tried to put it out of the line of his sight. 
Goodbye Bear.  We'll miss you, thank you for all you tried to do.

Most of what went were things Noah had simply outgrown.  We've acquired several highchairs... like more than five. Tons of toys that have lights, sounds, and movement littered our driveway.  My basement contains likely seven types of swings and ten therapy balls.  Even things I imported from the UK that cost us hundreds of dollars, like a baby seating system and even a bath seat that I purchased from Australia for Noah.   Things no one would ever pay that price for, except for me.  I'm sure the value of what was out there would have just surprised everyone.   But when you lay it all out there for a garage sale you know you won't even see half of what you paid for it.   Garage sales are such a funny thing, even if you give it away dirt cheap the negotiations to get it for less than .25 cents is the ultimately goal of most prospective buyers - one of the many reasons I'm not truly a fan of holding garage sales.  I really dislike when people act like your $1.00 price tag is terrible for an item in new condition that cost you $35.   I even had hoped that by posting a poster of Noah and telling them where the money from their sale was going that it would make a difference.  It did to I think two people who directly donated to Noah, but most of who came were people obviously trying to scoop up your possessions to load up their trucks to re-sell it all for a higher price.  

A garage sale customer made a comment to my mother about all the really great things that we were selling, and said "wow you really spoil your children."   To which my mother replied, "You don't understand, my daughter has a special needs child and we literally kept trying everything we could."

Just thinking about that statement makes me more teary than the fact that I let go of things that had memories.  Because in the end, you know my mother was right.  I kept trying and trying and trying some more.  And I'm still trying.  It's not about spoiling Noah, it was about giving him every opportunity - any opportunity I could find to soothe him as a distraught, inconsolable baby, to find ways to get him to engage with toys, to try to help him get past sensory aversions, to find ways to even sit comfortably with lack of head, neck and trunk control and purchasing every promising high chair I could get my hands on.  And most importantly a way to make him feel included and engage and participate in the world around him.  

And I'm still trying to do that.  With buying a $630 special needs sled from the UK, obtaining the GoTo Seat, the Upsee, and my mind still keeps wandering as I learned of a specialized GoKart that I would love to have that exists in the UK that allows the parent to drive while having a adapted seating for a special needs passenger with a five point harness.   I don't want Noah to feel like he is missing out on life - on experiences that he cannot have because he is severely disabled.   And maybe you might point the finger and say I'm spoiling him.   But if you could see the sadness in Noah's eyes and hear his pleas and cries watching his little brother do something he cannot, I guarantee you that the thirst to obtain anything to make all your child who cannot otherwise participate without specialized expensive toys, or experimenting with more highchairs that the average mother needs, would drive you to sell off all your precious memories with the hopes you could find a way to keep offering him everything you could.  

It's not like a typical child that can just play with a stick and a make mud pies.  He needs a lot of sensory stimulation and he needs access to toys that do half the work for him and often times have the ability to move or function independently from him making them do so.  And sometimes you buy things thinking they'll work and then they don't.  But you convince yourself they don't work today, but hang onto it, Noah will improve and they'll work tomorrow.   In the end you realize that that a lot of it simply needs to go.  It has served it's purpose and done the most it can do and then you find yourself staring at all these things in your driveway with a for sale sign.   All these beautiful things that look like they were never used, many items still new in boxes.  Because you gave it your all and kept trying.


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

Saturday, June 21, 2014

Noah's Power Wheels

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Noah waiting to see his power wheelchair
Even though studies have proven the importance of power mobility for toddlers and young children outlining benefits in social-emotional, cognitive and spatial perception associated with power mobility, some therapists still haven't gotten on board.   We spent five appointments out of a scheduled six trying to prove to a therapist that Noah deserved at a chance to drive a power wheelchair.   As I sit here writing this I'm still shaking my head at the fact that Noah even needed to prove himself.  What should have occurred is simply an assessment of how he'd best access and operate a power wheelchair.  But at the end of the fifth appointment it was clear that the therapist decided to road block Noah intentionally from being approved for a power wheelchair by refusing to recommend he was skilled enough to drive.   She was mad that Noah was acting age appropriate and didn't want to stop every time she asked him to.  Who would want to stop when you just realized you could make yourself move independently?  So, on the fifth appointment we were told not to bother coming to the next one as she had made up her mind.  She wasn't going to recommend Noah have a power wheelchair.  Her comments were rather rude, curt and very unprofessional.  It left me feeling like she had a personal grudge against Noah.   All of it lit a fierce fire within me, along with some maddening tears.  But once I picked myself and my heart up off the ground, I made it my mission to seek out another opinion and continue to pursue a power wheelchair in which I knew Noah could drive.

It cost us a private independent evaluation out of pocket.  But in just one evaluation appointment we accomplished more than we did at the previous five appointments.   Which makes you feel like they were simply milking Medicaid funding.   Finally, a therapist evaluated Noah who understood the research backing the benefits of early mobility for children.   A recommendation was given, paperwork submitted and then the Medicaid approval waiting game. 

I fully expected to have to challenge and appeal some accessories for the power wheelchair, like the stand attachment for Noah's Tobii eye gaze device, or the parental remote control that disables Noah from driving when we want to take over.  But much to my surprise Medicaid didn't deal me any fits.   It was ordered and delivered to be customized for Noah a two days ago. 

The appointment was really exciting.  We had waited over a year for this day to finally arrive after all that it took to find another way to get someone to believe in Noah.  His custom Aspen seat will be transferred back and forth from his Koala Permobil Power Wheelchair and his Zippie base.   His headrest was adapted with a head switch on the right hand side which allows Noah to stop and go with his cheek.   And he turns left and right by using each of his legs.  At first I wasn't really sure about the head switch.  We played around with it realizing that if we put it on Noah's cheek instead of his head that he didn't have to turn his head to go and stop but merely just put his cheek to the switch and still be able to look in the direction he was traveling in. 

Noah's power wheelchair
He got the hang of it fast.  Faster than I even expected him to.  He figured out how to do circles going left and right almost immediately.  And then we took him out to the parking lot and set him free!  There was Noah, with our supervision driving!  It was a pretty amazing moment.  I knew he could do it.  I just wish I didn't have to fight so hard for others to believe in him and that it hadn't taken me so long to find a way to give him this opportunity.   Part of me would just love to send a video and a picture to the therapist who refused to recommend a power wheelchair for Noah reminding her to believe in all her clients and to kind of say yes I found a way around you denying my child something he needed and deserved to promote his independence and personal growth.   But in the end, you can't convince people that what they are doing is wrong.  They have to come to that conclusion all by themselves.
Noah working on left and right turns
My future is so bright that I need shades!

And this is about Noah's victory, not how hurt I was by what a therapist said or did.  Noah is a soul that goes about his success rather quietly.  He has been proving all the naysayers wrong since the moment he was born.   And he'll never have to worry I will always believe in him.


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