Monday, October 20, 2014

A Boy and His Dragon

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Noah's dragon harness arrived this week.  It's manufactured by Leckey and is a part of the Leeway line.  I love how Leckey surprises me.  I'll get something and think whoa hold your horses what were you thinking?  This is complex and not going to work out - but in the end I'm pushing the panic button too fast and it turns out to be awesome!  


First I have to admit giving me hardware and require me to use tools and I'll be slightly intimidated.  Thank goodness for Noah's daddy who adores tools and knew exactly the tool we needed to attach it.  So that eased that concern.  But I was worried about how it latched with the clips hidden in the inside of the harness.  Kind of smart, but I was worried it would be a challenge to clip it on and off.  But that too proved to be of little concern.

I also was unsure of the back straps.  You adjust the straps with a pressure clip in the back.  Which reminded me of one of Noah's Fisher Price highchair models that he had as a baby.   It mounts differently than his current harness, so we are able to still use both, should one be in the laundry we can still use the other one.  And I really liked that option.  The harness is incredibly supportive and made really well.  It comes up great around the neck and trunk.  Fabulous support.

When we made the decision to pursue this harness for Noah I didn't really consider how adorable it was.  As a special needs parent, I am so conditioned to think about something being practical and needed before I even think is it cute?  Cute always takes a backseat.   This is the first piece of equipment that feels fun... that feels child-like.  That says I'm a cute little boy with a dragon that happens to sit in a big-boy special chair... not the handicapped child in boring, non-happy chair. 

Leckey is distributing this product through Ottobock in the USA. You can contact your local Ottobock representative or DME provider for more information on how to order.


I love this new direction and trend of going in a fun, playful direction with special needs equipment.  It adds personality and character.  I didn't realize how much I enjoy having something cute for Noah.   I was so conditioned to this is all there is... black, silver, greys... boring.  But hey it's functional doesn't matter if it's not cute.  But I'm finding the cute factor matters too.  Reminded me that my Noah is a little boy first and his disability comes second.  And I hope others see him that way too, the little boy and his dragon...

Love,



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

Tuesday, October 14, 2014

A Grateful Heart

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I can't count lots of things that go wrong in a day.  So much so, it often requires more than two hands to count.  But there is always that one thing.  Just one thing that is a blessing.  Sometimes I have to dig deep to find it, while other times it is like a sunbeam shinning down upon it encouraging me to shift my focus.   When I often feel on the verge of losing all hope, something incredible happens that pulls me back and reminds me of those words "never say never."

I've tried for over a year to obtain a very specialized bath seat for Noah that existed only in the UK.  The impossible mission.  I was really hopeful after obtaining the PPod that the same company would be willing to ship me this bath seat, but shortly after Noah's PPod shipped they stopped all US distributions of any kind.   This is a common problem, that many US families face.  You know the good stuff exists, but you can't get your hands on it.  But I could never stop focusing all of my positive energy on it.  I was always thinking about it.  I stalked pictures of  it on the internet, sometimes praying as I looked at pictures of it, sometimes with a heavy heart, sometimes trying to out-think the fact that it existed only in a completely different country.   I knew without question, with complete certainty - special needs mother's intuition that was the bath seat Noah needed. 

Every mesh dime sized bruise I'd see on Noah's bum from the bath seat he had, hearing him bang against the metal bar with his high tone, watching his body always flail to the left compromising the health of his hips and safety in the water... I just knew that he needed this bath seat.

A loving friend from across the pond made the incredibly loving decision to assist.  Another special needs family extended an offer to help me find a way to have it shipped here, reminding me "where there is a will, there is a way."   I know it must have been a lot of work, shipping between countries is isn't all cupcakes, and customs is a challenge to say the least.   But it didn't matter to this family, they were giving me the biggest long distance hug and support you could ever dream of.   Giving of their valuable time, to even hunt down a large box and a shipping company.   Some boughs of kindness are so big you don't know how you could ever repay them, other than to do your best to be there if anyone should ever call upon me in the same way.

In true special needs parent style, this amazing box filled with the best bath seat on earth with a large protective sign on top. Warning the delivery person to be extra careful because it was very important and for a disabled child.   Special needs parents are really good at taking good care of things - especially precious equipment.


I think the delivery man was actually relieved to hand it to me, he seemed rather frightened of the box's warning.   And carried it with two hands setting it down gently in the entryway.   It very well was the most well treated package I've ever received.   I still held my breath, praying it would be everything I dreamed for Noah and more.  And it was.

Carefully wrapped in plastic with care instructions I knew before I even placed him in it.   A blessing had been born. 


Noah fit perfectly in an estimated size,  his body snuggled and cradled exactly how it should be.  Safe, secure, sound and ready for a bath.  This bath seat had no drawbacks.   My first thought was why isn't there anything like this here?   Every child with a severe disability like Noah's deserves a chance to have a bath seat like this.   If we were in the UK, they would be custom molded, but even with a generic sized mold, it's fantastic.  It keeps Noah's legs separated perfectly, and he's comfortable and happy.  Things I live for.



Love,




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

Friday, October 10, 2014

Sinking Ships

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Today I had a day when you wonder just how did I get to where I am now.   Lots of things lead up to this feeling today.  A whole bunch of life complications become intensified when you have a child with special needs.   I never imagined our life would be like this.  The financial strain feels like I'm being smothered.   Yet out of desperation to help my son I make complicated decisions like signing on the dotted line on a promissory note.   We also are juggling multiple therapies that are out of pocket costs while Medicaid feels like my enemy, and it's hard to tell if there is anyone even in your corner anymore.

But I got to this really hard place in life out of great love.   Profound love for a little boy Noah, and a fight to help this precious soul who was given the short end of the stick because of a birth injury that didn't have to happen.    And maybe I'll have nothing to show for it - when your success in life is often judged by the material things in life.   But I'd like to think that when it's my time to be called to heaven that God will take my hand, and simply say "Job well done."

There isn't anyone on earth trying harder than I am.  That's why it's so difficult when you can't seem to tread water or swim faster than you are already swimming. To a large degree most all special needs families are sinking ships.  We just keep trying to fill those buckets of water to prevent us from going under.   When it comes to your child you just don't know how to give up.  There is this built-in-drive that doesn't know how to throw in the towel.  A universal hope that things will get better, no matter how dire they may seem today.

Each day there is a new problem to overcome, a new challenge that wasn't there yesterday.  And sometimes you wish you could just hit the pause button to catch your breath.  There are so many things that make special needs parenting harder than it needs to be.  Granted it's not easy when your child is 100 percent dependent on you for all aspects of his daily living.  That comes with it's own mixture of heartache and joy.  It's all the outside things that are mostly out of your control that are even harder than caring for a child like Noah.  Equipment you can't get, therapies and intensive camps you'll never afford even if you fundraise for the next thirty years, help that isn't there, family that has dissipated, emails that feel endless that are bad news about insurance denials and therapists transitioning to different jobs, nutritionist calls to return, and for many parents who have children with special needs, IEP meetings.  The list goes on and on.   We're juggling really two things.  The actual care of our child, with being our child's personal secretary and primary advocate.

I'm so ready for a ship that doesn't feel like it's sinking.  I want to be on dry land like most everyone else.  Each year it just feels like it's getting harder and harder.  And as Noah gets older his needs continue to grow while the help continues to shrink.  I don't know what the answer is.  Maybe there isn't one other than to simply keep on keeping on the best I can.   And of course saying a lot of prayers.

Love,




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

Tuesday, October 7, 2014

The Big Bad Brick Wall

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Everyday I wake up feeling like I'm doing nothing but banging my head against a giant big bad brick wall in hopes of helping my child.  That can't feel good you say?  It doesn't.  It hurts like bloody mad hell.  But my alternative is what?  Now there are people out there that think Noah doesn't need anything.  Nope doesn't need a bathroom, nope doesn't need a crawler that's a luxury item, nor does he any other piece of adaptive equipment, much less a chance to participate in the world (thank you dear Internet Trolls for your comments on that).... but it's so easy to think that when this isn't your child or your struggle.  I have no doubt you'd think differently if you were in my shoes.  You'd be doing the same thing I am banging your head against these big bad brick walls.  And chasing down every potential opportunity. Guaranteed. 

I take solace in knowing I'm not the only one this is happening to.  But the point is it shouldn't be happening to any of us. Which is a large reason that I write about what is happening so other families don't feel so isolated and alone when we're all facing the same fight and outcomes.

We started the process of seeking a modified bathroom with Noah's waiver funding April 16, 2014.  It took until July 31, 2014 (maybe August 4, 2014 considering that Noah's caseworker then asked for proof of home ownership) to submit the request to Medicaid.  We were told that due to the projected estimates for this bathroom modification that we would likely need to cut other benefits from Noah's waiver.  Things like therapy coverage and respite care had to be eliminated from his plan in the hopes to receive funding.  So we continued to do without help with the belief that Noah's bathroom modification would be funded.

From the beginning of April until the end of July I spent countless hours coordinating appointments with state-approved contractors, a state-approved occupational therapist who specialized in home-modification requests, obtaining letters from all of Noah's therapists and primary care doctor to support the need for a modified bathroom request per the advice of Noah's county caseworker, then I spent time waiting on his caseworker to write it up and submit it. 

We waited from the end of July early August for a decision from Medicaid.  Even after my diligent, polite checks to Noah's caseworker only to be told no news yet.

This comes as no surprise if you are a follower of Noah's blog that today (October 7, 2014) we got our denial.  Yes, that's the theme for Noah - denials.  While I'm not entirely surprised about a denial in general, I was surprised at the reason for the denial.   Especially because a large portion of the denial was based on what I was told to do by Noah's caseworker.   Either the person who is supposed to be your advocate actually sets you up for failure or a Medicaid worker purposefully misread the submitted information to grab at straws to deny it.  Maybe it's a little of both, I'll never know. 

The home modification: I (state) reviewed the bathroom modification and it was denied because of the luxury items. The bid contained luxury items including: two roll up sinks and contained items that are available under state plan such as grab bars. Also we don't approve "walk in therapy tubs". This request is not the most cost effective.

The state also include:
Also, the "assessment" letter is from a person who is a "Feldenkrais Practitioner"; I'm not sure what a FP really is, but the assessment needs to be from a qualified provider; meaning PT or OT. I'm pretty sure we don't have a Feldenkrais provider category. Also, there is a letter from his doctor who states Noah needs a modified bathroom. The doctor is not a valid referral for a home modification, and will not be relied upon for professional endorsement.

The kicker is sure, we can resubmit it.  But that will take some time.  Contractors will need to re-do their bid to eliminate a sink that Noah could wheel his wheelchair under (even though we didn't ask for two roll under sinks), and re-iterate to the state that we were not asking for a walk-in tub.  And I'm not sure how they'll deal with the fact of convincing the state that yes we did submit a qualified OT evaluation and report from a state-approved agency, in addition to simply submitting supporting documentation from Noah's team of therapists and doctor to simply further support his need.  This could take a minimum of a week - likely two because I know how slow this goes.   We'll resubmit it, but the likelihood that Noah gets a response, much less approval on a revised request by December 31st - is likely slim to none. 

What does that mean?  That means that I just very well flushed nearly 36K of Noah's waiver money down the drain if it isn't used by the end of the year.  Purposefully modifying his care plan knowing we'd need extra pennies for this bathroom modification.   Funds that won't ever benefit Noah.  The state gets to keep it at the end of the year - whatever funds weren't used.   Feels enormously unfair.  A system designed for failure.  Do everything you can to keep from helping children like Noah.  It feels like a you are constantly living by a lie.  Here's all the help - but we'll make sure we find ways to never give it to you.

Excuses like the "state and the county are under stress to conserve funds," explained by his county caseworker.  Funding that is supposed to be allotted for your child.   Yet not a single person on this earth gives any consideration to the stress that comes along with special needs parenting.  No one loses sleep like I do, no one wonders how I'm going to find help like I do, no one cries endless tears like I do.   Noah means nothing to anyone but us.   No one says wow I just road blocked a sweet deserving child from help.  It doesn't lay heavy on anyone's heart.

I used to say I wouldn't wish special needs parenting on anyone, but I think I actually would.  I'd wish it on everyone that hasn't gotten a clue what this is all about.  That's the only way they'd feel it and understand it - to feel the hurt from hitting this constant big bad brick wall themselves.

Love,



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

Sunday, October 5, 2014

Healing Through Art

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When we were invited to launch the Upsee in Northern Ireland earlier this year, we had the true privilege of meeting so many really incredible people.  Many were families just like us.  It was an instant connection as we knew we were all witnessing this magic together.  A gift many of us never dreamed possible.  Watching our children walk with us.   I seen hope, faith, love and dreams in the eyes of others that mirrored my own.  Connections and friendships formed that will always mean so much to me. 

As we've kept in touch since our return, I've learned of one mom that is facing an incredible struggle with such courage.   When I first met her we sat next to each other at a get-to-know-you dinner event.  And she was so easy to remember since we shared the same first name.  I instantly admired her, before I even knew her story.   She was the type of person you immediately recognized as a strong mom, with goals to make the world a better place for children like ours.   She was the catalyst behind getting handicapped accessible shopping carts into the hands of families at Sainsbury's, a large shopping chain in the UK, and most recently took her voice to Parliament speaking out about the lack of childcare for children with disabilities.

We talked about what our days are like, comparing life in the UK and life in the US and what resources were available to us, what our challenges were and our hopes and dreams for what we could make better.   Being just strangers to each other on our first meeting we shared laughter and an unspoken understanding of what life is like raising a child with a severe disability.

But my true understanding of the person she was when she described her precious child, May, and her recent battle with Leukemia.  As the true fighter I sensed in her, she was in remission and the tone of victory in her voice was so powerful.  Sometimes in life, you are so very fortunate to meet people that continue to inspire you to keep moving forward no matter how hard, no matter what the cost.   So, my heart was heavy when I learned that her leukemia had come back and that she was entering the hospital for a 30-day treatment.  With true grace, strength and confidence, all that she was hoping for was some inspirational artwork from children like Noah to get her through her next fight. 

Noah and Luke sat down for an art session together, creating masterpieces that we hope will help her on the hardest of days fight and win this battle.   I pray for the good news that she once again has blasted leukemia and that we may one day again have the opportunity to come together again to being strong voices for children with special needs.
Noah making his masterpiece

If you'd like to send some love and prayers her way.  You can find her at the blog: Mama Lewis

You never know how strong you are until being strong is the only choice you have.
Love,




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

Friday, October 3, 2014

Stumbling on Gold

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Finding products that are designed for typical children that would work for Noah has always been a challenge.  I look at every little item digesting it's potential for success.  Features that may work, and usually ultimately deciding what would give an item a failure ranking.  It was really hard for me in the early years trying to shop at places like Babies R Us, knowing that many items would never work for Noah, yet sometimes out of wishful thinking I'd by them up anyway convincing myself I could make it work, or that Noah's skills would improve.  Sometimes I think I just wanted to feel like any other parent that got to go to the store an pick out a something precious without having to think about a child who couldn't physically use it. 

It is often really rare to find a product that was designed for typical children and have it also work out super well for a child that has special needs.  Which often times leaves me sense that I'm living in two worlds.  However, I recently stumbled upon such a product.   One of those products that every special needs parent is just going to swoon over.   I hit Gold.  Accidental Gold. 

The ezpz mat.   Yes, it's pretty awesome. 


I have bought countless clip on trays, bowls, dishes, anything I could think of that would secure to Noah's wheelchair trays and the kitchen table.  Without success.  The problem being Noah has so much strength and power in his arms - especially with his athetoid movements that he'd swipe anything off the table or his tray no matter how many suction cupped items I attempted.  I bought several tray products including the Bambinos Tiny Tray that clips to the table, and while that worked for some things it wasn't the tray of my dreams and Noah would constantly catch himself on the table clips.  It made sensory play hard and challenging, it made trying to teach him to play in his own food and be able to have any fighting chance of independence in eating skills impossible.

Because of this challenge I think for a long time we've reverted to something easy but necessarily the best for Noah's interests.  We have a bowl a distance away from him and we just spoon feed him each meal.  This unfortunately offers Noah very little opportunity to explore his own food and sensory wise expand to touch what is even going in his mouth.  But having Noah swipe a full bowl of food off the table was discouraging, we'd have to blend his foods all over, and therefore just accepted the fact this was how it had to be to make things work.  

When doing my routine daily searches for how to improve Noah's life, in hopes there was something I had not yet learned of or seen, I stumbled upon the ezpz kickstarter page.   Maybe it wasn't just chance, maybe it was destined to be - never underestimate the power of positive intention. 

I found the video about ezpz, which was so luring.  A mat that doesn't slide, three cute compartments and bonus an expansion of a future line with a bowl mat and potentially a high chair.  I was reeled in with thirsty curiosity still carefully guarded that this could simply be the best infomerical out there and I'd be tremendously let down by the promises of this product. 

But I couldn't resist.  I kept going back to it for a week.   And finally I decided I just have to try it to know.

The ezpz arrived in the mail 2 days ago.  And I wish I had more than 1.  This mat is essential.   It's huge.  It's amazing.  It's everything I wanted and then some.  And bonus a product that both of my children can use and love equally.  It's dishwasher friendly, storage friendly, wheelchair tray friendly and does everything it promises.  Sticks like glue to the surface no sliding around.  And gives Noah every chance he needs to play in his own food.   We now have another way to do things - a mat that won't slide with a built in units to hold the food.   Noah can touch his food all he wants and I know the entire meal won't be tossed to the floor with his often awkward and jerky movements.  And aesthetically they come in bright colors which I love.  Noah's blue ezpz mat matches his Leckey Mygo and Leeway line bib perfectly.  You'd think they were a complete set.

I can't wait for the line to expand, and will certainly be purchasing other products from this new company.   The inventor, Lindsey Laurain, has made a product that is going to appeal to both typical and special needs families alike.  Something so rare to find. 

They retail for $24.99 and are worth the price.  Ezpz mats are 100 percent silicone, BPA, PVC and phthalate free.  They are dishwasher and microwave safe.  I find they wash up really easy however, by hand.   I can't wait to see the expansion of her line and hope to be able to obtain more of them in the future for both Noah and his little brother.

Here is the link to pre-order yours for when they go into production in early 2015:
http://www.ezpzfun.com/

And the informational video can be found here:
https://www.kickstarter.com/projects/632139179/less-mess-happy-mat


Love,



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

Thursday, October 2, 2014

Cut Us a Break

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Life has always been about learning as you go.  I wish it wasn't.  I wish someone said here's the in's and out's of special needs parenting.  All you will ever need to know can be found these volumes of encyclopedias and hand them to me and say here you go.  There are really three separate hard parts to special needs parenting.   There is all that comes along with your child as a person.  The lack of skills, not being able to sit, crawl, walk, talk, or self-feed and having to care for his daily needs 24/7.    Then there is the appointment aspect of things, coordinating therapies, doctor's visits, and specialists.   Then the most frustrating portion of things dealing with government agencies, equipment vendors and distributors.

For years I have felt like there is a huge gap in accessibility of adaptive equipment for children with special needs.   It's taken me a bit to figure out who rubs who's back and the dynamic of this really messed up system.  And the tragic thing is I know no matter how much I complain I can't fix it for Noah or any other child like him.   And money talks.  It always has and it always will and unfortunately because the majority of us are at Medicaid's mercy, nothing about this process is fast or even fair.

Noah is a complicated little guy when it comes to equipment.  He's particular, he has a multitude of sensory challenges, and the support accessories he needs can be involved.   Finding the right match for Noah as he continues to grow is hard.  Noah is not a one-size fits all child.  And by that I mean, he has several pieces of equipment that all have a specific purpose.   He has a feeding chair, he has a power wheelchair, he has a chair that he uses for speech because it allows for more head support, he has a chair that he travels in.   And none of these pieces of equipment are good substitutes for any other activity.  Right now my difficulty is a wheelchair that fits and is suitable for traveling.  I think I've found a model that I think would very much work.  Noah likes the "car seat" design to wheelchairs, with a 5 point harness very typical of what you'd see in a traditional car seat.  He likes big flared headrests that he can't get his head out of, with a large pummel that prevents his hips and body from shifting with his high tone.   I think I found a model that would work, the new Ottobock Neo with Kosi chair.   Looks very much like the car seat design that Noah gravitates towards.  And would closely mimic what he was used to the Recaro special needs car seat.
The Ottobock Neo with Kosi Chair

I pretty much know if a product is "Noah friendly" if I see it in person and even place his body in something just 1 time.  I know him that well.   The problem being I can't seem to get my hands on this model to see it - or at least not what I gather will be any time soon.  These vendors let out one demo product to the state.  Which goes from family to family to trial.  A family could easily have a product for 30 days or more to trial, who knows really where I'd be in line.   But it delays my timeline of making a decision significantly.

You wait to trial a product 2-6 months.
You get to trail a product 2 weeks-30 days or more
You ask your DME to put in a request for the product and gather medical necessity requests from your child's physician 1-3 months
Your DME actually puts in the request and you wait on Medicaid's response 2-3 months
You get approval and the product is ordered 2-3 months
You get on the schedule for product delivery 1-2 months
The actual wheelchair arrives at your house 1 month later.

Having $7,500 at your disposal... priceless it likely would arrive in less than 2 weeks from the date of purchase.

This process of getting a new wheelchair from start to finish can range anywhere from 1 year to 18 months.  Potentially much longer if you get a Medicaid denial, which can happen if you aren't at your time guidelines (i.e. they only provide a new wheelchair every 3 years).

The other gripe I have is the amount of money these things cost.  I am for the most part at Medicaid's mercy.  If I wasn't I would have just gone out and purchased that Krabat Pilot Crawling Device.  But I, like most families don't have thousands of dollars just laying around.    The mark-up on these products is insane and these prices make an out of pocket purchase impossible to shortcut these timelines.

Sometimes I wish someone would just cut us a break.  We shouldn't have to wait for eternity to have our child be able to have access to things they need for daily living.  There should be forced shorter timelines for all of us.  Like a law that said a DME has to put in a request within 2 weeks, that Medicaid has only 2 weeks to get back to you with a decision, and 2 weeks to order it and have it delivered to your door or in the mail.   Noah needs help now,  waiting a year or more to sort things out makes me swell with tears.   It has been a full year since Noah's Krabat Pilot crawler request, and of course I faced a denial, an appeals hearing, an appeals win, then an appeal reversal, ultimately ending up in a complete denial... but can you imagine if Noah would have had that crawler a year ago, what progress he could have made in that year I spent fighting so hard?  And can you imagine that same kind of wait for a walker to allow a child to walk? Or a wheelchair that properly supported a child's needs?

I dream of these big life-altering changes for children with special needs... I dream of a time when it's an easier fight for their parents, when we didn't have to go to bed and pour our tears into our pillow hidden from our children with that feeling of falling short to help them in all the ways that we need to. 

Love,



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