Thursday, May 29, 2014

To Be the Fool

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Crossroads, journey, decisions, quest, a new chapter in life, two paths to choose from, changes, choices to be made, ideals, hope of a bright tomorrow, happiness, laughter, trust in life, spontaneity, innocence, trust, openness. We must make our choices, learn when to trust our resources, and decide when to step into the great unknown.  When the challenge arrives, will we be up to it?

The saga continues for a piece of equipment for Noah called the Krabat Pilot Crawling Device.  A battle that has been dragging on since October 2013.   After a win in Court for Noah in March of 2014, the State Department filed an Exception to the Initial decision (appealing Noah's win), and here we are at end of May and I received yet another Order indicating the Court has reversed Noah's win.  What was a win based on the ability to show medical necessity was reversed now on the failure or belief that the device is now unsafe.  I now have 15 days to show cause of why the Court should not have reversed Noah's win.  

I'm also rather frustrated as the Court pointed out that the first steps before forcing us to appeal is a the request for a "peer to peer" review or a request for reconsideration.  However, upon contacting Noah's durable medical equipment (DME) provider to inquire about the next steps after this denial I was told:

"The denial is for the crawler system.  Is you want to appeal the instructions are on the back of the denial.  Please let me know if you are going to appeal so I can note it in my system."

There's a strong possibility that my nearly year fight could have all been avoided with proper information and having Noah's doctors and care providers do a "peer to peer" with the State to reassure them that this was an appropriate device for Noah, or a request for reconsideration with additional supporting documentation if necessary.   Yet per usual, the theme of my life, learning the hard way.  

Part of me says I should file my Motion for Reconsideration within 15 days.  Part of me says what is the point.  The belief from even family is just give it up already.  After all I'm just making myself look like a fool.  And how long can one person really fight?  I am indeed just one person.   No attorneys, no good guidance from his DME, from no real support from anyone what chance to I really stand?  The odds are certainly continually stacked against me.  

Some days you do feel like the everyone is just sitting back having a grand laugh at your expense.  Look at little Stacy who thinks she'll be a hero for her little boy... funny isn't it?  Go ahead laugh.  Can't hurt any more than it already does.

The general consensus is that I'm a masochist.  Maybe I am a rare beast.  Maybe everyone except me would just roll over and play dead and accept the word "no" we're not going to help your child.  Every single aspect of anything that has to do with Noah is off the charts complicated and challenging.  There is no easy day, no day without a bad news email, phone call or dilemma or someone in your face at your door telling you how you should be grateful they gave you a "free ramp" even though they've strung you along for 6 months lying to you that they'd help fix the sprinkler system they cut, the stones that are raising, the stones even lacking sand, and the sand piling up by the front door.... as the contractor's words ring out in my head "don't worry you'll never track in not one grain of sand."  Never mind the garden and plants they killed that and the continual change of design plans... and when I ask them how they'd feel if they were me the response was "I'm not going to answer that."  And then was gruffly told to dig out the stones myself to level them and a damaged sprinkler system was a small price to pay.  Sometimes I have to believe in karma because there is no other retribution.

I feel when you have a child with special needs you hear more lies than truth.  Which makes it very hard for me to determine a "good egg" from a "bad egg."  Part of the problem is that you're really at the mercy of so many people's good will when you're in this situation.   Noah's needs, and those like him, are great.  Medicaid fails you, friends and family grow bored with fundraising efforts, and after a while you're really seen as a broken record playing the song "Help Me," over and over again.   Believe me no one could hate that song more than I do.  But I sing it just like the thorn bird sings to its death. 

There's that continual whisper though, it is gentle and soft, and it wraps me up in faith-like belief that justice and truth and all that is good will prevail.  My soul seeks it.   It tells me to keep going. It feels bigger than me and it is this internal drive that says I cannot stop trying, Noah depends on it.  I try to tell the whisper how unrealistic it is pushing me on and on, but it is relentless.  It nudges me, prods me along.  


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

Tuesday, May 27, 2014

A Special Needs Pet Peeve

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Without question we purposely avoid places that could expose Noah to germs of any kind between October and April of each year.   However at some point, you have to allow your children access to the world after what you think is a safe time (typically late spring and summer months) where the risk is significantly lower.   We decided to venture out to both the Butterfly Pavilion and the Aquarium over the weekend.  Usually we go once a year - mostly due to the sheer price tag that is associated with admission.  And we lack the financial resources to hold anything other than a zoo membership.   Maybe we just picked a bad weekend.  Flooded with people, really most of which who had little regard for a wheelchair, pushing their way ahead of us.  

I was amazed at how many sick children there were.  Coughing, noses running, eyes watering.  Some looking beyond miserable.  Yet, there they were out in public.   That was not social etiquette when I was growing up.  If you were sick you parked your sick butt between the couch and your bed, while having your mother make chicken noodle soup and sip beverages of all kinds to keep you well hydrated.  The last thing you'd find is our parents dragging us out and about. 

However, now days the theory is, little Johnny has a cold.  We don't want him to have cabin fever, or since we have to be off work anyway because he's sick let's go have a fun day and expose the world to his germ.  After all, who cares really if I'm infecting a medically fragile child or a frail elderly lady.   Their problem, not mine as long as my child is having a good time while snot flows endlessly from his nose. 

Little Johnny should be home, recuperating while he's sneezing, coughing, complaining of a raw throat with throbbing ears.  Not at the Butterfly Pavilion and not at the local aquarium spreading his illness to hundreds of people.  And if he should be going anywhere it should be to the doctors because you failed to recognize that his head cold has now moved congestion into his ears and has settled in his lungs after society has convinced you that antibiotics are overly prescribed and that everything including pneumonia is JUST A VIRUS!

So as you guessed it, I sit here with two sick children who came down with a cold at the exact time.  This wasn't even a case of little brother giving it to big brother (which often happens simply because Luke can touch his face, eyes, and mouth freely where Noah cannot).  This time it was literally like a timer going off at the same time!  

 And if I sound mad, it's because I am.  This sleep seeking mom is so over people not being considerate of others.   I am over that no one can even think about how their actions will effect someone else.  No one ever considers a medically fragile child in their decision-making because well, they don't have one.  But I can guarantee you if the shoe was on the other foot and this was your journey you'd be fuming mad that you can't even take your children out to a child's place for fun without coming home with a germ.  All because those who have sick kids don't have the common sense to keep them home. 

So surviving on less than an hour and a half of sleep while I cling to a pulse oximeter, (and no that's not the name of a new planet found by NASA).  It happens to monitor your oxygen saturation levels or to simplify that - how well you are breathing.   I also get some other fun things to do like rescue Noah from every snort as he struggles to adjust to the growing mucus down his throat, because he can't sit or even move properly to clear himself like other people can.   Imagine your typical child sick times ten!  And don't forget I do indeed have a typical child to care for as well, who is seeking out comfort when I have to run to rescue the other one who is gagging because of his nasal drainage.  

While I sit her contemplating face planting myself in a bucket of coffee, I will hope that this post reaches at least one parent that will never take their sick child out in public again to expose them to others that can't recover as easily as their child can. 


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

Thursday, May 22, 2014

Seeking "My Person" On the Special Needs Journey

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"You are My Person," is a term coined by the ever popular show Grey's Anatomy.   That person in your life who through the thick of complicated, tragic, joyful, challenging, celebratory and everything in between is there for you.   Not many "My Person" in the land of special needs.  The job description is harder to fill.

You'd have to be able to celebrate by jumping up and down because my child was able to consume a cheeto for the first time at age 5.   You'd be so happy you'd bring me a cake that said congratulations and we'd all celebrate how proud we were. 

 You'd never dream of rubbing salt in my wounds by comparing my child against yours and understanding just the gift of life alone was a milestone.

We'd play on the same team every single day.  You'd never think twice about not calling me up to invite us to the zoo, to a park to play, our out to shop for new clothing for our children.  You'd search out all the best stuff, like sensory friendly clothing and toys and share with me your great finds.

You'd be there to help me do things you didn't like to do, like change soiled sheets, assist with helping toilet a severely disabled child,  or helping me lift a heavy wheelchair into the back of my van.   You'd always recognize that sometimes you just need a hand.

No matter how busy you were in your day,  you'd remember how important I was to check in with me at least once a day.   Just to say, you were on my mind.   And we'd exchange small chitchat about the challenges and triumphs we both shared in our lives that day.

When I got bad news, it would mean you'd come over and just sit with me, even in silence while I tried to work things out in my head.   Knowing that at least someone cared enough so I could gather myself to move forward the next day, stronger and better than the day before.  

You'd never get mad at me if I simply needed a moment to complain about all the hard things about special needs parenting.   Never holding it against me if I just needed someone to hear me vent, scream and cry.

You'd go to bat for me whenever you could.   Offering to help me fight insurance denials, call government agencies, or lobby for positive change that would impact my child's life. 

When I had brilliant moments of something I thought would benefit my child's life you would never tell me how impossible or stupid my ideas were and would help me find a way to make them a reality.

You'd be honest and tell me exactly what I needed to hear.  Even if that was that I needed to quit worrying so much.

I'd share lots of concerns about my child's future.  The biggest of which who was going to take care of him if something ever happened to me or when I got old and died.  You'd be the first person to say don't worry, I'll step in for you and assume that role of caregiver if anything happened to you.

You would understand and highly respect how hard each day was and would never put me down for having to prioritize caring for my child over a coffee date.  You'd be so gracious to pick up coffee for the both of us and sit at my kitchen table while I spoon fed my child a meal. 

You'd be able to read my body language and expressions that you'd never have to ask what was wrong.  You'd just know. 

On my worst days, you'd be there to hold me up.   You would come with unlimited hugs and words of comfort.   You'd hold my hand and we'd just sit on the couch and talk through it all.  You would be the best listener. 

You'd dance with me, help make me brave, and we'd share daily affirmations.

You'd be so committed to being "My Person" that I'd never have to worry about you leaving when things got too tough or emotional to handle and the special needs journey became overwhelming to our friendship.

I don't know if I'll ever find "My Person" on the special needs journey.  But I'd like to believe that person exists for all of us.


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

Wednesday, May 21, 2014

Needs Versus Wants When You Have a Child with Special Needs

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We've all heard from time to time... you must separate your needs from your wants.   Usually this speech is given by well intentioned people trying to make you feel better about something you want that you just can't have.   But what if you have a child with special needs?  Separating needs from wants isn't as easy as people think it is.   We're all familiar with those people who live above their means.   Those who think that they need a 9 bedroom 6 bathroom house with only 1 occupant or need a new car yearly.   And then wind up complaining when they can't pay their mortgage and their car is repossessed.  In general we do live in a society that constantly has the need to always have more and more, never satisfied and content with having their needs met.  Yet do we really care all that much if someone has the ability to financially pay for their wants?  No, not so much.  We only want to point the finger in judgment if we think a person should only focus on their needs  when their wants have landed them in a financial predicament.

So naturally the assumption is special needs parents must be living above their means, especially if they cannot separate needs from wants.   Let's just take a look at some of these theories that have evolved:

I've honestly lost track of how many people have told me my child does not need alternative forms of therapy, because PT, OT and Speech are therapy modalities covered by most insurance companies. (Keep in mind some families even struggle to have the basic PT, OT and Speech services covered.)  They think that if an insurance company fails to cover or recognize another form of therapy then it must be because it's a want and not a need.   This school of thought implies your child does not need any other form of therapy if it's not a covered benefit.

There are a wide range of alternative therapies available:
*Conductive Education   * Feldenkrais Therapy
*MNRI (Masgtova Method Therapy)
*Stem Cell Therapy  * Dolphin Therapy   *Reiki Therapy
*Gesret Method Therapy    *Hippotherapy 
*Cranial Sacral Therapy   *ABA Therapy (Applied Behavior Analysis)  
*Warm Water Therapy    *Music Therapy   *Dance Therapy
*ABR (Advanced Biomechanical  Rehabilitation Therapy) 
*ABM Therapy (Anat Baniel Method)
*Acupuncture    *Bones for Life   *Therasuit Therapy
*MBS Therapy (Mind, Body & Soul)     *Massage Therapy
*Chava Shelhav Method Therapy    *Color/Light Therapy
*HBOT (Hyperbaric Oxygen Therapy)    *Vision/CVI Therapy
 *Movement Therapy *Therapy Through Art    *Yoga Therapy
*Vital Stim Therapy  *Aromatherapy    *Tactile Therapy
*Animal-Assisted Therapy
All forms of therapies are costly.  One session can on the low end be $50 per hour, on the high end $500-$600 hourly.   Some forms of alternative therapies have therapy centers, in which you have to pay thousands for a week or two of daily attendance.   It is easy for a person who doesn't have a child with special needs to say, these therapies are not a need they are a want based on price tags alone.  The majority of special need families look at it from the perspective that if there are certain therapies that work for their children and will offer them a better quality of life, the opportunity to improve, whether that be so ever slightly then it's plain and simple.   That therapy is a need.  

Adaptive Equipment may just likely be the most controversial aspect of needs versus wants in relation to a child with special needs.  

Fact:  A child who cannot walk is in need of a wheelchair
Fact:  A child who cannot walk also is in need of a gait trainer/walker
Fact:  A child who cannot sit unassisted is need of comfortable adaptive seating (even if viewed recreational for lounging purposes)
Fact:  A child who cannot crawl is in need of an assistive crawling device

Most generally don't dispute the above facts, unless you are of course an insurance company trying to dodge funding those needs.  However, the perception that children with special needs for instance don't need the following:

Fact:  A child who cannot sit or walk, who has limited head and neck control needs a special needs sled to play in the snow
Fact:  A child who cannot walk independently needs an Upsee by Firefly
Fact:  A child who does not have good use of their hands needs costly toys that are switched adapted to play

Now those types of things people are going to shake their heads at.  They'll say really does your child need a $600 special needs sled or is that just a want?   You should be able to build one right, with some cardboard and tape! Or you should be able to just use a walker or gait trainer and don't need the Upsee to allow your child a chance to walk alongside you and participate with in the world easier.   Or why can't you just rig a string to a toy and wrap it around the child's wrist.  Surely he doesn't need these costly adaptive toys?

It's very different on viewing needs or wants relative to a child with special needs.   It's all a need because they cannot participate in the world any other way.  And because many children with special needs are so severely physically limited they require devices and pieces of equipment that allow them to the opportunity to engage in the world where they otherwise couldn't.   As special needs parents we are rather resourceful with DIY (Do-It-Yourself) projects.  We can build and rig some really great things.  But sometimes you really need a product specifically designed by experts.  

Home Modifications/Handicapped Accessible Vans
Parents hear all the time:  You can just lift him everywhere you don't need a handicapped accessible van.   An adaptive bathroom?  What for?  Just have someone hold your child on their laps and hose them down...  need a ramp for your doorway?  You're not strong enough to lift a wheelchair in your house?   Yes people really think these things.  

Granted if you don't have a child with special needs it may be hard to appreciate our daily struggles.    It starts to become a safety risk when you are trying to load a growing child into a car seat, unloading and transferring a child from place to place has it's own safety risks.  I remember a time in fact when I fell trying to self-correct my son's spastic movements and landed hard with my elbow and my child's head smacking the pavement.  Something that wouldn't have happened if he was already in a wheelchair that I simply wheeled out of a handicapped accessible van.  But I had to transfer him from a car seat and then to a wheelchair.   Bathing a child with special needs also comes with challenges.  Standard bathrooms are not designed for a child who you wash while hitting your back against a toilet, a child that you have no where to lay down after a bath because he's now too big for the bathroom floor.   A child who cannot even wash his own hands because he doesn't have access to a handicapped accessible sink.    And although most parents with special needs children have a strong threshold for pain and endurance, we still lack the ability to carry a 100lb stander up the stairs or a 250 pound power wheelchair into the house.   There comes a point in time where all these things become a need and not a want.

Without question if you just utter the words "special need"  it's attached to some hefty price tags.   You'll find those that say well if you cannot afford, therapy, equipment, home modifications and a handicapped accessible van then it's not a need it's a want.  After all you have to be able to afford something for the finger not to be pointed in the want direction.  Unfortunately, you just can't classify the everything as a want when you have a child with special needs.  Every single special needs parent wants to be able to financially provide all these needs.  And without question they are needs.   But we can't always do it alone.  We have to rely on foundations and grants, we have to ask for donations, we have to hold fundraisers.  Because we know that we we must find a way to meet our child's needs.   We are not trying to live above our means. We are the families doing without, to put any extra we can towards assisting our child with special needs.   We think twice before we buy new shoes for ourselves even when the soles are worn and broken,  we think twice about spending money on recreational fun activities because we know that we need to save every penny for our child's needs.  Yet even though we 're doing all we can, yet we still have those telling us that we don't need any of this for our children.  We only want it.  It's an important distinction that stares us in the eyes each day as parents who have children with special needs.


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

Saturday, May 17, 2014

The Evolution of the Circus

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It's been a hard week I can't sugar coat it.   Although I hesitate to write about it all because sometimes I feel like it gives all the negative, complicated events in our lives more power over me if I openly talk about it all.  That it feeds pain.    And in the end what does discussing it really accomplish anyway?  A handful of pity?  A dash full of those who are glad they aren't me?   I'm still always where I started from which is usually no where.

So let's just say that I was less than enthusiastic about going to the circus for the first time with boys after all that's been hitting me lately.   There are just times when you want to really withdraw from the world and throw in the towel with people in general.   But these circus tickets were a gift and I didn't want them to go to waste simply because my week, like most really... was trying. 

The circus started rather late in the evening for Noah, 7:30pm, but I figured it would be likely a short circus - maybe an hour.   It lasted until 10:30pm much to my surprise with an intermission!   I was glad that it was the El Jebel Shriner's Circus because I thought we'd have a fighting chance at a handicapped friendly experience.   And we did.   I'm not really sure where our seats were supposed to be because as soon as they seen the wheelchair the ushered us into a spot with a ramp so Noah could sit up in the very front row, close to the arena and be able to remain in his wheelchair.  We didn't even have to ask for help, it was just openly offered.  Which was so nice.  You always sometimes hate to feel like you are begging upon someone's sympathy to have them rearrange something just because you have a child with special needs. 

The circus has certainly evolved since the last time Chris and I have been, which has likely been close to thirty years ago for the both of us.   I don't ever remember PETA or animal activists lining the streets when I was a kid.   That's a hard thing to explain to a child I think.   Thank goodness Luke is only three, even though I'm pretty sure Noah knows how to read.   I get it, I do.  I'm a huge animal person and the idea of any living creature being mistreated or abused makes me twinge. 

But even aside from the animal activists boycotting the circus, it was different than how I remember it.   It was more simple when I was a child.  The circus now has a very hip-hop feel, with loud music, lots of dancing mixed in with various stunts.   You still have your familiar tigers and elephants, but now it's a mixture of jump rope acts and balancing ceramic planters on your head. The other big difference is now as an adult, when you see someone almost slip and fall you pray they recover fast so your children don't witness a terrible accident.   I'm sure accidents still happened at those types of events when I was a child, but as a child you don't recognize the potential of all that could go wrong at that age. 

Noah however loved the evolution of the circus.  It was up his sensory seeking alley.   He was thrilled with loud booms, he thought when he was startled it was funny, he giggled at the flashing lights, and appreciated the deep pounding bass of the music.   And he loved that he was close enough for performers to interact with him.  He likes it when people talk to him.    He isn't big on being swallowed by a crowd however, and didn't like that the elevators were so full, causing him to complete his signature gag and vomit reflex.   Thankfully he recovered quickly since it was a very short elevator ride from the parking lot to the event center.

We learned that he loves clowns, and that Luke does not.   We learned Noah has a fascination for all things that go up in the air, not just airplanes.  That Luke loves to dance, and is slightly defensive of other children getting too close to animals he loves, thinking they all belong to him.  Which was rather funny to watch a three year old try to stand guard over an elephant.  Things I never got to see Noah do.  Things that are simply typical with each growing age.   It is all so bittersweet really.

It was great to offer the boys that experience.  I think they both had a really good time.  I know Noah did for sure.   I love it when he giggles and squeals,  I'm happy if I can make his life happy.  


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

Sunday, May 11, 2014

13th Annual Mother's Tea

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I received a very special invite to the 13th Annual Mother's Tea sponsored by Ability Connection Colorado (Formerly Known as CP of Colorado) by a dear friend named Patricia Skolnik.   I met Patty, during one of the most heartbreaking times of my life.   Silent Snow was my first blog post during that time. I was trying to find a way to express my tremendous pain, still hesitant to tell anyone what had happened.  I laid in bed for 3 days motionless, unable to move from the deepest depression I have ever experienced in my life.   I was trying to grasp how a jury could prevent justice from prevailing for my child.  How a hospital, doctor and two nurses could just walk away without any consequence for being the cause of my child's severe brain damage.   The world had turned it's back on us, I found myself in a position of scrambling to find $12,000 for a court transcript to preserve our right to appeal for Noah, without any attorneys who wanted to move forward with us into an appeal.  An Order of Judgment had just come down against us for $340,000.  And in the 11th hour, as I broke down on my kitchen floor, on my knees, wailing with all the cries deep within my soul, an amazing lady viewed Noah's story on 9news and contacted us.   That lady was Patty.
Patty Skolnik at Mother's Tea

Patty herself no stranger to grief, pain and loss.  Her son Michael underwent unnecessary brain surgery at the age of 22 which led to his death three years later.  She has transformed her heartbreak into being a Patient Advocate for others.  "She is the founder and director of Citizens for Patient Safety (CPS), a non-profit global grassroots organization working to create transparency between consumers, the medical community, insurance companies and the legal community ― to improve the healthcare system and quality of care that patient’s receive."  Patty is featured on the documentary Breaking the Wall of Silence  and her story was also featured on The Doctors.

Without having ever met me, here she was, this voice on the other line, I could feel her hug me through the phone, her voice soft, soothing and reassuring me I'd be okay, she was going to help me.  "Don't worry" she said, "pick yourself up we're going to help you find an attorney to move forward."  And she did exactly that.   In fact our first meeting was at an attorney's office who was our only hope and chance for Noah.    She has been my life-line in recent months, offering me encouragement and comfort, checking in from time to time because she cares so deeply about Noah and our family.  I've drawn upon her strength as a mother that has experienced the ultimate pain that life can deliver,  she has served as my example of how to keep going, and most importantly how to transform your grief and despair into change, reform, hope and advocacy for others.   She is my example of how to move forward with grace, dignity and the fierce drive to improve the lives of those you touch.

So when I received her invite for Mother's Tea I was eager to share her company and positivity that naturally radiates any room she's in.   I draw upon her energy - a fuel... a reminder that I can keep going.  And when there are days when I think I can't do any more.  I think of Patty and say yes you can.  Pick yourself up.  Find your inner-core.  And keep going.

I didn't really know many of the attendees at Mother's Tea, looked around and only seen one familiar face.   Figured I'd just do what my mother taught me to do and that was to be a little social butterfly.   I stood in line for my raspberry-peach champagne, then toured over to the line for portraits.   While standing there by myself, I suddenly heard this little voice say "hello."  It was a sweet little lady behind me.  She asked if by chance my child had cerebral palsy, I said yes.  She said so did her son, but he had passed away after 57 years of life.   She said her name was Grace, and we chatted a bit about others we knew in the special needs community, and through conversation realizing we had a mutual contact.  Sometimes it's a small world on how we all are destined to connect and come to know each other.   But I'm convinced nothing is chance.  It's all part of this bigger plan that I will never fully understand.   We were getting along so wonderfully the photographer thought we had come together, and didn't know that we had only met a short few minutes before.   We decided to take pictures together.  New friends.

It was a rather large event with numbered tables, so I helped Grace find her table then I found mine across the way.  I was introduced to so many wonderful, talented and amazing women.  Lunch was served immediately with a delicate salad and tea to start, followed by a mushroom ravioli with sausage and chocolate mouse with cookie crumb topping for desert.    We had light conversation, and each introduced each other at the table, of course with me being the only introduction that came with water-works.  When you look back and remember the pain that brought you to that friend, it's hard not to get teary.

They had ballroom dancers with a lovely young lady named Sarah.  Sarah has cerebral palsy and is such a wonderful, inspiring example of how all things can be possible.  You just have to believe.   It took her 10 months to learn just one dance box step.  Her perseverance and beautiful spirit kept going forward, and today she is able to dance several dances.   It was beautiful to watch her.   Even more beautiful to hear her words of love for her mother.   I doubt there was a dry eye in the house. 
Sarah, sharing her experiences dancing with Cerebral Palsy

They also had a small fashion show with clothing lines from the Gap.  It was so neat to see a handicapped ramp at a fashion show.  Many children in wheelchairs, modeling their clothing for all of us.  Was very sweet and lovely.   All of those children so proud of themselves.  It made your heart swell with joy for each of them. 
Gap Fashion Show Models
Gap Fashion Show Models
All of the Gap Fashion Show Models on Stage

Then came the end, where they nominate and select six mothers to receive a pamper package for special recognition for the difference that mothers make in the lives of their children with special needs.  It was so wonderful to hear about the stories of each person nominated and the difference they made.   Patty was the last to present at Tea.  I expected her to offer a thank you speech to all who attended.  Little did I know, that she had found the letter I had written and posted on my blog about welcoming a A Child with Special Needs on Their First Day of Life .  As soon as she started reading and she had to take a break from tears... I knew those were my words.   Hearing what was once written in my heart spoken by another is quite moving.  It took on a life it's own, off the page and into the hearts of other mothers.  Patty saying all these amazing things about the characteristics she seen in me... things I never thought of myself as.  I only get up each day knowing I have to put one foot in front of the other for Noah.   It was an overwhelming moment that someone seen so much in me.  I've always only viewed Noah as this little shinning light, never me.  I've only ever wanted to be the voice for his life, his legacy and journey.  

Patty presented me with the final pamper package gift, so unexpected, and such a beautiful surprise.  My little thank you speech was unrehearsed, so I was slightly emotional, with so many rambling thoughts running through my mind, most of which how honored and privileged I felt to be a part of such an amazing group of women.   As my new friend Grace said "we are survivors."  We have been through things in our lives most couldn't ever imagine, never feel, never fully grasp or understand until you've lived it.  We can look at each other and know.  We need no words, just as our children need no words.  It's something that never goes away, not even in the eyes of the mothers that have lost their children to heaven.  I hope that I'm blessed to attend again, it was truly one of the most rewarding experiences to be in such inspiring company. 


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

Saturday, May 10, 2014

Meet the MV-1

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Keeping busy seems to be my thing these days.  Some days I think the busier I can keep myself the less I focus on the complicated things going on around me, often many times situations I have no control over like Medicaid Appeals, and the most recent SSI overpayment challenge.    So after I finished discussing stair lifts... I moved on to another appointment to check out the new 2014 MV-1. 
2014 MV-1
For those that aren't familiar with the MV-1, it's a handicapped accessible vehicle made by Ford.  It made it's debut a few years ago, but then took a hiatus in 2013 while it switched hands and was redistributed for sale.  It arrived at my home promptly at 6pm so that I could tell everyone all about it.   I'm not sure what to really think of it's exterior.   When people see it they give it all kinds of different labels like ugly or boxy.  It really it does look much like a European Taxi, and feels just like riding in one.  I think it may be shorter than a traditional conversion van, just by first glance, but not by much.  It has ADA compliant sized doors so that's an interesting feature.   It's not plush like most vehicles.  You aren't going to get that warm fuzzy cozy feeling from the MV-1.  It felt very industrial, business-like with rubberized flooring and vinyl seating.  Hardly the family type feeling that other traditional vehicles offer.  And it has very little creature comforts.

The ramp is what I was most drawn to.  It has the feature that recognizes the need for different ramp extension needs.  Do you only have room for 4 feet?  Do you have room to extend 6 feet?  It knows and can adjust which is a nice feature especially because you never know if someone is going to park too close to the side of your vehicle and leave you with too little room to extend a ramp.  I also like that it has an over-ride feature in the floor and comes with it's own tool to manually over-ride the ramp if it malfunctions in any way so that you do not wind up stranded.  It also has a kit in the trunk that allows you to instantly inflate a tire to fix and plug a flat so you also don't wind up stranded with a wheelchair user.   A bag in the back hangs for storage for your wheelchair tie-downs, lap belt and shoulder belt for your wheelchair user. 
Ramp Controls on Side of Door

Extended Ramp
Upon first glance I was a bit taken back by the fact it has no passenger seat.  None.  Driver's seat then next to it a hole... odd for me.  Not sure I liked that.  In fact I'm pretty sure I can tell you I don't like that part the more I sit here and really stew on it.  I tried to convince myself Noah might like riding in the front seat next to me.   But that would be odd too.  There is no air bag in the front passenger side, which is both good and bad.  Obviously good for a child Noah's size if he was going to be strapped right next to the driver's seat, it would be very unsafe if a airbag deployed with a child of his size, yet for a bigger and older user I can see why an airbag in the passenger section would be beneficial.  It does have overhead side airbags from front to back.   You could position your wheelchair in three ways.  Directly next to the driver, in the middle slightly behind the driver, or in the backseat.  
No Front Passenger Seat
I felt like seating options were limited, especially if you have other children or car seats to consider.  And I'm not sure I'd find it comfortable to have one parent forced to ride in the back seat no matter what.  Now there will be the option likely in 6 months to a year where an additional passenger chair can be purchased.  It's not available yet, but they recognize that is a feature that they'll need to explore.   It doesn't have all those family fun features like a fancy stereo or a stereo even with a CD, or an overhead entertainment system. Which is a draw back for us because Noah requires a portable DVD player to stay happy while traveling in the car.   It has cup holders on each side of the door panels, and for the driver the cup holder is directly at the bottom of the seat, where I know I would likely knock it over or kick it, or couldn't reach it comfortably while driving.  I could use the cup holders that are in the dash on the passenger side, but again I'd be reaching.   There is no glove compartment... bummer for me I like to store papers and things. 
Front Dash

It is really nice to drive.  It feels much more like driving my former SUV, a bit higher up than a van.   The power is sufficient and doesn't make you feel like you are driving something that can't get up and go.  Parks nicely and much the same any SUV and van does.   People definitely notice it, there are less than 1000 of them all across the US, so this is not the car for you if you'd like to blend in.  
Back seating

I'm a bit leery of it's trade-in value or potential if you wanted to trade it in on a new or different model down the line.  Obviously there are a lot of factors that play into any trade in for a vehicle, but if you plan to put a lot of miles on it, I gather most dealers wouldn't be interested in buying back or trading a vehicle with 80,000+ miles on it.   Do special needs families even have the capability to really trade one handicapped accessible vehicle for another financially?  Not really sure I know the answer to that.  Most families I gather do the best they can to obtain one, no matter how hard and run it until it won't run anymore.   Financially I assume, it just isn't an option to upgrade or trade vehicles in on a regular basis. 
Bag in the trunk for wheelchair tie downs

I think the MV-1 is a model that is more designed for a person with disabilities that is much older than child age, or an adult spouse, or even for example a disabled Veteran who even has the ability to still drive but needs to do a wheelchair transfer to get into a driver's seat.   Kid-friendly?  I'm thinking overall probably not so much.   And I think the market on the MV-1 will be limited because it is likely not to be very appealing to a family with a child with special needs in a caregiver role.  The MV-1 is perfect for an adult who is able to drive and can transfer to drive.
Floor Tie Downs/Anchors
There are most definitely some features that give the MV-1 an edge over conversion vans.  For instance, it is the only model that is made to be handicapped accessible at the factory.   Very unique in that way, and they are moving in the right direction with that idea.  More models need to be produced from start to finish as a handicapped accessible vehicle.  Because of this, the price is a tad lower than you might find with conversion model vehicles.   When you convert any van to be handicapped accessible, they have to cut the floor out, lower the vehicle, move electrical, re-route the gas... really give the van a complete overhaul to add a conversion kit.   And as soon as you do that, you have just killed any warranty your van may have had.   Because you severely altered it.  It wasn't designed for that purpose.  Not to mention there are only a few states in which conversions are installed resulting many times in the cost of shipping your van to another state for the conversion and then having it shipped back which adds additional costs to the price.  A conversion van doesn't always necessarily have a ramp built into the floor, many of them fold up against the door.  Conversions to a van can cost upwards of around $26,000 onto the base price of any traditional van.  The MV-1's ramp goes directly into the floor which to me is a selling feature.  A typical conversion van also doesn't have the capability to recognize how many feet of clearance you have. 
MV-1 Interior
I think by adding a passenger side seat is going to be a huge necessity for the MV-1 in marketing to families with special needs children.   By nature of the age and situation of our family dynamic we are going to want two parents up front with the children in the back.   We want that same kind of normal feel that we'd have without feeling like we had to change how we sat or positioned ourselves within a vehicle due to our child's special needs. 

It would be a vehicle that would be easy to keep clean with tracking in mud, dirt and debris from wheelchair wheels.  I also like that the MV-1 is soon to come with roadside assistance and if it needs maintenance or service that someone comes to your home picks it up, leaves you with another vehicle to fill your handicapped accessible needs until your car is ready to be returned to you.  You are really on your own if you have a conversion vehicle that needs service, and would have to likely coordinate a time to be without a vehicle that would have a ramp for a certain amount of time. 

The MV-1 sales approach is also very different in the fact that they are really relying on word of mouth to talk about it for sales.  It doesn't really have the market for a sales commercial, in fact many people may not even know of it's existence.   The price tag used is around $40K; the price tag new is around $55K.  There are a variety of different lending options, even including the option to lease.  Yet even at that price, I think they recognize that it's going to be a difficult price point for many with special needs.  We are simply a community of limited resources.  And by nature of the daily price tags that we are faced with it is hard for the average family to move forward with a purchase of that magnitude even with a variety of lending options. 

Overall I think the MV-1 has some decent potential.  Is it going to be the first choice for many special needs families?  I'm thinking maybe not.   They do have plans to expand some of the MV-1's features.  In 2017 they even anticipate making a AWD or 4-Wheel Drive Model.   I think they also need to consider making an upgraded dash, including a more modern stereo, consider a glove compartment, the option for a built in entertainment center since the chairs are one piece and eliminate the ability to strap a portable one to the back of the driver's or passenger seat.  It needs just a touch more to reach a wider market.  But like just about anything you'll find pros and cons, and features that either fit or don't fit individual needs.   At least it's an option, and we certainly need more of those within the special needs community.


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

Friday, May 9, 2014

Cruising the Stairs

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Today I met with Ascent Elevators about a pediatric stair lift.  One would think these things are pretty simple, but there are a lot of factors that go into a stair lift.  Calculating angles and turns, and of course the specific needs of each user.  Noah is a tiny little dude.   But he's not going to be tiny forever,  and he's getting heavier and longer by the day.  Not to mention I still have visions of the day we fell down the stairs together when I was holding him in my arms.  You can't catch yourself because you know you have a child that has no natural reflexes to brace himself.  You must hold on tight and allow whatever to happen to your own body while guarding him the best you can in a fall.  I can tell you from personal experience how truly terrifying that was. 

It gave us a lot to think about.  The cost really is going to vary depending on each individual staircase, and each user's needs.  For Noah he'd need a 5-point harness and potential abductor or pummel as they are sometimes referred to as.  Our staircase is also kind of a challenge as it would have to be customized with an initial seven steps down a landing and then another seven steps to the very bottom.   The more turns you have on a staircase the more money it's going to be.  Need something custom like a 5-point harness and pummel?  Well that will cost you too.   It's hard to really give you a clear idea of a concrete price because there are so many variables.  On the low end with a simple straight set of stairs and a basic seat with very little added support you might be in the $2,500 range.  Add on all the little extras and I heard figures close to $14,000 today.  Yes no kidding.  
Acorn 80 Stair Lift
Now if you're lucky some Medicaid insurance programs will contribute to a stair lift, but they usually have some fine print clauses like you can only do a home modification every five years, or can't exceed a certain amount yearly with all benefits which also include a home modification of any kind.  So it's not really as sweet of a deal as you might expect or hope it to be.  Which is going to leave most families in need of a pediatric stair lift paying out of pocket, trying to find charities or grants or flat out fundraising for one.   Not the news anyone wants to hear when they really need a stair lift to allow their child greater access to their home, or even in safety circumstances in many parts of the country where severe storms are prevalent and require the safety of a basement. 

With any project there will be features that are more desirable than others.  It mounts directly to your stairs so aesthetically it may stick out a bit, if you also have an open stair case with other small children, or in my case, a child with special needs that rolls everywhere you need to depend on a baby gate that could pose a problem with the installation of a stair lift.  Every staircase is different but it should be a question that is asked if you are need of using a baby gate in conjunction with a stair lift.

Stair lift rails - cuts down on stair space

These stair lifts have batteries that are constantly recharged and offer about 36 trips back and forth without power to a home.  The battery has a five year life span and isn't terribly expensive to replace with a cost of around $35.  We discussed the Acorn 80 Curved Stair Lift primarily today.   I have some reservations that it could be adapted in a way that would be suitable for Noah.  I really seem to like the Stannah pediatric stair lift model.  I like how it has a hooded chair for children who need a bit more postural support, and a more involved lap belt that mimics what many special needs parents might refer to is as a hip cradle belt.   Some children would of course also need an additional harness for support depending on individual needs.  And it's in a more child-friendly pattern than the traditional taupe that the Acorn 80 is. 
Stannah Child Stair Lift
Some parents may be drawn to the simplicity and neutral tones in the Acorn 80, it would be easier to blend in decorating.   The Stannah is a "happy blue child-like pattern"  that would get more attention and be noticed more.  However, having a child that is so small I tend to gravitate less towards what would blend in and what would offer my child the sense of being a child.   Nothing wrong with a little child-like special needs flare in your home.  Gives it character.  Simply says a special child lives here!

It was really informative and good to know what options are available.  Add it to the wish list...


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

Friday, May 2, 2014

We Are Not That Family: The Typical & Special Needs Sibling Dynamic

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A week or so ago I watched this TED talk by Alicia Arenas titled Recognizing Glass Children.  Found here . A talk exploring what It means to be a sibling of a child with special needs.  I watched it from start to finish, initially intrigued by the term "glass children."  A reference I had never heard before, and yes, I've been a special needs parent who has been around the block and is into a seasoned year five with our own journey.   The reference to "glass children" is a concept rather that a typical sibling is seen through like glass - basically invisible really within the family unit due to the dynamic of a special needs family, a child who take a back seat so to speak. 

This is how Alicia Arenas defines a Glass Child:

"Glass children are healthy children who have brothers or sisters with special needs. They are typically emotionally neglected, experience severe pressure to be problem-free and perfect, take on parental responsibilities within the family at a young age and have an overwhelming need to make others happy. All this while receiving little nurturing and support in their development years."

We certainly don't expect our typical child to be perfect, self-sufficient, or take on our parental duties.   In fact I think we're inclined to appreciate all the little things that come along with a child because we have another child that is so physically limited.   Some children naturally take on a caregiver role, especially within larger families where the children to all tend to some degree help with each other.   That is not specific just to families who have special needs. 

My first reaction after watching the TED talk was really?  After all the hardships, after all I do in a day, how I hard I try to balance both of my children's needs, and you are still going to tell me I am failing my typical child because my first born has special needs? And you're going to grow up and blame the parents?  Isn't that lovely.   Immediately I had a twinge of instant guilt.  You're telling me that what I am doing isn't enough.  I read between the lines; the implication I am short-changing my typical child.  My mind raced well how could that be?  Is it because Luke naturally wants to assume a care role in assisting me with finding his older brother a diaper?  Trying to feed him a bottle?  Or because we have to go to therapy on Thursdays instead of to the playground? 

Without question a special needs family is typically much busier than a traditional family.  We are balancing parenting with a primary caregiver role.  Many of us have children who's survival is dependent upon our care and lack traditional milestones and independence that comes with each growing age.  And yes I'll admit it.  Cerebral Palsy affects the entire family.   All of us, right down to the grandparents.   It will forever alter how you do things, how you plan, coordinate and even react to each other.  But it does not automatically mean that you are failing your typical child while tending to the needs of your child with special needs.

And the assumption that if you have both a mixture of a typical and special needs children within your family unit that somehow the typical children are destined to get the shaft in someway... well I say hogwash to that.   Special needs parents are typically a nearly a super human breed.  I don't say that lightly or to brag.  We can dance circles around the hardest of days, with little sleep, with little complaining and we have the ability to balance everyone's needs, sometimes minus our own. 

I remember some of Noah's therapists approaching me before Luke wasn't even a year old.  Get Luke into group therapy as soon as possible he'll need coping skills since he has a disabled brother... make sure he has other typical peers for proper socialization... he needs to be in pre-school immediately.  Or better yet when they moved onto evaluating Luke himself.  "Nice pincher grasp,  look at his hands go to mid-line, or oh he's walking well for his age."  With the assumption that if you have one special needs child, then all of your offspring must in some way have a condition or ailment of some kind.   Unsolicited advice on how to handle your typical child up against your special needs child can be the most annoying move someone can make.

Generations of children have grown up to blame their parents for shortcomings.  Rather than accepting accountability for their own actions, such as a problem with drug abuse, poor social skills, not being able to adequately hold down a job, have stable housing, or a life without crime, they love to point the finger at the parent.  It's your fault you failed.   So that blame the parents phenomenon is not new. 

But to say that your typical child is going to grow up and tell the world they are holding a symbol of a broken childhood because they had a special needs dynamic in their family?  That's simply unfair to automatically assume that all typical siblings are going to grow up and feel their childhood drew the short end of the stick.

Each day we don't have to go far to hear about inspirational stories of typical and special needs siblings helping each other.  Running races for each other, being a champion to inspire change so a sibling they have can play equally beside them.  Now those are the stories that reflect our family.  We are not the family that fails either of our children.  We are the family that bans together.  All four of us, to brave this journey together.  Each one of us coming out better because of it.   Luke is going to grow up and tell the world how inspirational his older brother was, and I have no doubts it will drive the course of his life to help others in a way he otherwise would not have been led. 

So I reject the idea that Luke is a Glass Child.  We recognize all of his needs, we have adequate nurturing and support for both of our children.   And if you have to point the finger in my parenting direction because I have two different able-bodied children, then maybe you can say I didn't feed them enough sugar in childhood.


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

A Letter to a Child with Special Needs on Their First Day of Life

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Dear Sweet Child,

Today a fighter was born.  You.  Yes, you.  The sweetest, tiniest, most precious little soul.   You are strong, brave and full of courage.  I'd like to welcome you to the world and tell you a little about what to expect on your journey.   It may be a confusing time for you.  Machines sounding and monitoring your progress, tears of your parents falling gently upon your delicate skin and doctors swirling around you.  Never fear, you are loved.   You will soon find clarity and your purpose.   Life for you will be a little different than it is from most.  You see you were born special. 

There will be days in your life when you will reach for the stars, and other days when you will feel defeated no matter how hard you try.   There will be triumphs and celebrations, and at times unexpected set-backs.   Your life will be a tender balance of difficulties and joy.   But you will undoubtedly do amazing things.  You have a gift to light up dark rooms, to speak without words, to inspire others and to demonstrate unconditional love.    But the world won't always make it easy for you to shine like the star you were born to be.

There will be times when you are met with cruelty.  Stares, hurtful words, uneducated people, and those who cannot yet see the beauty that is before them.  It may make you feel lonely or worthless, but you must remember you are far from those things.   Your heart will be wounded at times, but you need to know you are never alone.  Because your heart is so big, you'll be quick to forgive.  You'll teach more lessons in one minute than some can learn in a lifetime.

The world around you will occasionally be complicated and messy.  You may hear predictions about your destiny and  have expectations placed upon you.  Remember you are defined by none of it.  There are no limits to what you can achieve and accomplish.  No one can determine what you will be capable of during your journey.  You will be a surprise each day to those around you.  

There may be scary and hard times too.  You may experience a multitude of medical procedures, endure countless hours of therapy, and even accumulate various types of assistive devices to help you along in your day.  There will be a team of those loving you through those times, and they will bring you comfort to see you through all of it. 

You are going to do so much with your time here.   It is not about what you can do or can't do that will define your life.   Spreading love will be your specialty.  You may encounter hate, spite and ignorance, but the love within you will be stronger than all of it. 

We're really glad that you're here.  Your life brings so much value to the world.  You might need a pep talk sometimes and that's okay.  We all need that from time to time.  But no matter what remember never give up hope that things will be better tomorrow. 

For now, remember this:  When you feel low on smiles, and you feel it's over before you've had a chance to begin, dig deep and remember your purpose.  Laugh loud, live in the moment, and dream big and most of all remember you matter in this world.


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