Thursday, May 28, 2015

Feel Better Friends

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Noah received a special doll from Feel Better Friends.   A Feel Better Friend is a handmade doll made from lots of love and well wishes that are made by volunteers donating their talent and time to bring smiles to children battling illnesses and disabilities. 

"In May of 2014 Shanon Fouquet, artits and designer from Shanonigans, came up with the idea when she saw a picture of a little girl, Berkeley who was battling cancer holding her American Girl doll.  Like most little girls who have this popular doll, Berkeley was “twinning”, or dressed identically with her doll.  Shanon looked at this particular photo of this brave little girl who was proud to be going ‘wigless’ to her doctor’s appointment that day, and Shanon couldn’t help but wonder if Berkeley would like for her doll to be able to go ‘wigless’ too.  It was then that Shanon decided to come up with a handmade doll created just for her with a wig and matching clothes that could go ‘wigless’ just like Berkeley!  Shanon had so much fun making Berekley’s doll that she decided to make more dolls for other children suffering from cancer and other illnesses, who would like the comfort of a Feel Better Friends doll custom made with their own likeness and characteristics. It was then that the FBF project was started and quickly grew and soon there were enough children wanting FBF dolls that Shanon couldn’t keep up.  She started a volunteer group of other crocheters who wanted to give just like Shanon.  Now with over 300 volunteers across the US and some in other countries there are children all around the world receiving the love and comfort of their very own FBF dolls."

Noah's doll artist, Amy Anderson reached out to us in early May to coordinate the details of Noah's doll.  It's so important to them to make them as closely as to the child as possible.  Some incorporate disability features like wheelchairs or walkers for their dolls, while others pick themes and incorporate their child's likes.  We had the choice between a wheelchair accessory and an interchangeable Mr. Tumble outfit.  The choice was not a hard one.  Right now Mr. Tumble is a huge part of Noah's life.  So we chose the Mr. Tumble outfit as an accessory for Noah's doll.  His doll was made super fast and in about two weeks arrived for him.  Noah adores his doll.  And Luke recognizes that it's a Noah's twin doll so he doesn't try to poach it from Noah.  It stays close by with him during the day and Noah does his best to wrap his arms around him. 

You can tell that a lot of love was poured into this doll.  It's a wonderful thing to find dolls that look like our children and represent them and their abilities.  Cognitively Noah understands quite well his environment and surroundings and the older he gets is becoming more aware of how different he is from most people.  Toys and dolls that resemble him I think help him identify that although maybe different from most that there is still someone like him - this sweet doll. 

A new movement has started with a compaign called Toy Like Me.  A petition calling to action to challenge more vendors to incorporate toys with disabilities into their line.  That could be simple things like a Lego set that you could build offering a disabled parking space or ramp, dolls that have a wide range of disabilities,  a Little People line that have wheelchairs and walkers.  Everyday toys that any parent like me can find at Target or Toys R Us that isn't going to cost us a fortune.  And these toys would be beneficial for typical children as well.  It opens the doors for questions and exposure to children of all abilities.  I'd even someday love to see larger motion picture movies start incorporating more characters with disabilities.  Anytime a large blockbuster movie comes out they inevitably have a toy line to accompany it.  But I have yet to find a movie that has a character with disabilities that finds it way to transforming into a toy that I'll eventually see in a Target isle.   We have a long way to go, but in the meantime I'm so grateful to Feel Better Friends for designing this very special doll for Noah.  A true keepsake that he'll have for years to come. 


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

Saturday, May 23, 2015

NeuroMovement for Children with Special Needs Workshop 2015

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Last weekend I attended Anat Baniel's NeuroMovement for Children with Special Needs Workshop 2015.  I had gone to a similar workshop two years ago when she last came to our area.  This year I went with Noah's Feldenkrais therapist, who has been in his life since he was 14 months old.   After we struggled through a year of traditional therapies with no progress which caused him even more distress than he was already in, I began my quest for therapeutic modalities that would benefit Noah without causing him discomfort, stress and additional anxiety.   It didn't take long before I seen a shift in Noah's response - emotionally and physically to different methods of therapy.  I quickly realized that I had a child that needed to learn differently in order to build bridges in his brain.   Noah learned to roll one month later, growing proficient in rolling each year thereafter and at age six now can roll to any room in the house and has learned to close doors behind him using either his feet or his hands.   And trust me he finds his privacy important and gets very upset if you open a door once he's worked hard on shutting it on you.  

I always think it is beneficial if a parent can actually experience and gain a good understanding of what their child is experiencing with a therapy method.  To feel it for yourself is very important.  Does it hurt?  Does your body feel different?  Does this cause stress?  Do you feel better? Worse?  We put our children through so much in the hopes of being able to offer them the best quality of life.  But what does that feel like for them.  And at what cost to them and their level of happiness?

I'm a parent that couldn't handle Noah's screams and cries during therapy.  Some parents are okay with that.   I never was.  Many therapists tried to convince me that forcing Noah to do things that caused him distress was mandatory for progress to be made.  Forcing him into doing something he couldn't do, didn't want to do.  Therapists even withholding him from me so I couldn't console him or offer him the comfort of my loving arms.  I feel like I spent the first year of his life torturing him because I didn't know better.  I didn't know there was this whole other world out there of different therapies.   The majority of Noah's therapies are what are deemed "alternative therapies."  Of course they are not recognized by insurance and are all out of pocket costs.  For the last six years we've done our very best to pay for eight different therapies out of pocket.  Because they were what were most benefiting Noah - and they continue to do so.  They each all have an important role in his life - and they are making him happy while giving him the building blocks to physical progress. 

ABM has played a significant role in teaching me as a special needs parent on how to perceive things differently.  Lessons I needed to hear.  Things I needed to learn to grow and navigate this journey.  Even though I attended two years ago, I still learned new things, heard new messages, and Anat has a fabulous way about reminding you about what the goal is:  You cannot fix any of it.  But you can offer them a method of learning a different way of getting around physical limitations.  She has a gift of renewing hope in your heart, and understanding that progress comes in all different forms.  

Just like the last workshop, she did some demonstrations with children with special needs.  While I was disappointed at the last workshop as the child didn't have a lot of physical challenges and would go on to meet all milestones with a little time - this year both children had some significant difficulties ahead of them.   Both girls much younger than Noah.   The first set of parents were unable to console their daughter who was distraught and having a really rough afternoon.   I was them five years ago with a little boy I couldn't console.  He cried endless hours out of each day.  I was beside myself.  I don't even know how I made it through the first year of Noah's life.   Looking back on myself in the earlier days makes me just want to go back and give myself the biggest hug for what I went through.  And I did it with so much love and devotion - and cried a lot of tears because I was scared and didn't know how to help him - and in my mind how to "fix it."

These parents were never able to calm their little girl and Anat was unable to work on her.  I seen the disappointment on their faces and could feel their sadness.  Having Anat touch your child is a true gift, I have always hoped Noah would have a chance someday to work with her.  So I know their disappointment was significant.  They gathered their things and left.  I pray they don't abandon ABM as a type of therapy to try.  And more importantly I hope no matter where they are they know it wasn't their fault their daughter was upset and that they're doing a great job.  We place such heavy guilt upon ourselves when we feel we can't "fix" our children. 

I think that's the message I love the most that Anat delivers.  We can't fix anyone.  I can't fix my neighbor, I can't fix a mother, brother, father, or husband, I can't fix my children.  We can't change anyone.   We can offer them the tools to utilize change, but forcing someone to do something - will never happen.  I can't force Noah to walk.  I can't force him to talk.  I can show him patterns that might lead to those steps.  But I can't make him do it.  No matter how much I wish for it for him.  He is his own soul signature in this world.  A leader of his own life and own destiny.   And it's important to me that I don't break Noah's spirit while I'm on this quest to assist him with recovery and his physical abilities. 

I want therapy to feel good to him, to offer his body comfort and give his brain feedback that there are other ways he could try that might help him get around something that is prohibiting him from moving in a certain way or reaching the goals he wants to reach.   Once I quit pushing Noah into therapies that he hated, the progress started happening.  And it might not look like a lot - because society measures perfection in milestones:  He isn't walking, talking, crawling or sitting independently - so to them progress isn't happening. 

These types of workshops are really great for parents - especially those seeking to find a different way of looking at the special needs journey.   There is so much healing that we need to go through too.  It's not just our children.  And I always want to be open to learning, expanding the way I think, and listening and being open to ideas.  It's a continual growth process for all of us.   It helps me be the best parent I can be to Noah.   There is nothing about parenting - even special needs parenting that is perfect.  There is no such thing as perfection.   But I can learn to do my personal best and be open to receiving new messages and information that will help better guide me along the way.

Anat is hosting several workshops in different states, if you have a chance to attend, I still recommend it and think it's worthwhile.  I had seen this video at both of Anat's workshops and as a special needs parent you can truly feel the journey of a special needs parent.  Don't be afraid to let go of traditional therapy - it may lead you and your child to a road you never thought possible.


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

Monday, May 18, 2015

Just Please Stop Raining

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I wish it would stop raining.  Literally and figuratively.   It has been raining before Mother's Day, with a brief snow just in time for Mother's Day and has been raining off and on pretty much since.  I'm tickled pink if we get above 60 degrees and we're in late May.  With a short growing season I'll be lucky to see one zucchini squash and a handful of berries.  And for whatever reason many of our older bushes and shrubs died over the winter, something being a native I've never ever seen happen.   Which means a lot of root digging and plant funerals in my future.   Our yard feels like a squishy marsh when you step on it, and I had a handful of mud piles from where the grass suffered winter kill.   To say the least I have a lot of work ahead of me to nurse our tiny yard back to health.  But asking for a little sunshine would be a great start.

This weather of course does nothing to help with the personal rain cloud I'm feeling as a result of spending an exorbitant amount of time this past weekend drafting a legal appeal for the denial of Noah's disposable medically necessary pillowcases to accompany his anti-suffocation pillows that the State purchased earlier this year.  I do really feel bad that I have to take up the Court's time with a pillowcase issue, but I'm so totally over being railroaded into the State keeping Noah's benefits that are allotted to him each year.   A purposeful move on their part.  Eventually, I would think they would get exhausted doing this tango dance with me and just fund what is needed in accordance with his CES yearly funding plan.   It irritates me to no end when I hear other parents saying their needs are being met and their requests fulfilled when Noah sits on a handful of denials.  It's definitely not a consistent program, and they have no real valid reason for black-balling Noah from benefits as I haven't been unreasonable or out of line with them.  In fact I'm likely being WAY to kind to them every time I have to correspond with them.    Different counties can somewhat run their own ship as they feel, most of this is caseworker or supervisor discretion.   It wasn't a good time drafting the appeal request but so be it.  Sometimes you feel like you have nothing more to lose.

And Friday afternoon I got my nice weekend surprise.... a Social Security Overpayment Demand.  Just fabulous.   I am so over these too.   I faithfully turn in Noah's daddy's pay stubs monthly.  I fax them and send a copy by certified mail because they have been known to say they didn't receive a fax.   So I spend the extra money to also have documentation of a certified document being signed and received by them.  It's really my only concrete protection that so they can't deny timely receipt.   And I'm good at this - I never forget to do it - not ever.   So when I get these overpayment demands I'm especially livid as it's not because I'm not doing my part and sending them pay stubs.  It's their error (always) because they yet to this day lack the ability to do accurate math.  But what this means for me is more time that I have to fill out both a Waiver form and an Appeals form (because you never really know which one they'll accept).   And I have to of course make copies of my certified receipts and fax confirmations to shove back under their noses to remind them I am right and they are wrong.   I shouldn't have to always do this.  But they've made a habit out of it. 

I wish I didn't have to be dependent on either system, County Services or SSI, in fact I think they rather put parents like me through the ringer in hopes that they can force us to go away and voluntarily withdraw from government assisted programs that are specifically designed to help the disabled community.   But I have no other choice in order to help Noah and financially provide for him in the only way I know how.

I do have hopes that eventually I will make the right connections, and that it will lead me to a way to reach those that have the ability to hear Noah's story and to make the changes that need to be made not just for Noah but all those following in our footsteps.   My soul says I must change things, that I cannot allow another family to suffer like we are.  That I must find a way to stop it for future generations.  It doesn't have to be this way.  And it will take so much pressure and worry away from parents that are already struggling just to cope with their child's care and diagnosis.  We do not need to be adding these additional problems to their struggles.

In the meantime I had some hopes that if I could get it to stop raining here that I'd find a way to get Noah to Give Kids the World (a place that requires a wish granting opportunity to get there)... so far that seems to not be going well either.  Not sure that will ever happen. Never mind me, off to find my umbrella so I can try to let it all roll of my back (if that's even possible). 

"Our lives begin to end the day we become silent about things that matter." - Martin Luther King, Jr.


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

Wednesday, May 13, 2015

Constantly Troubleshooting

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One of the most difficult aspects to parenting Noah is that sometimes things are a guessing game.   While yes, I'm an expert in his care and needs, there are still some things that I am unable to find a solution or remedy for.   These things that keep me up at 1am, 3am, 5am because my brain cannot accept that I cannot out-think the problem at hand.  Contributing to my exhaustion as a special needs parent, things beyond my control often dwell heavy in my mind.   It's likely that need that most all mothers have no matter what ability of child they are parenting to "fix it."  And when we realize we can't we stew on it often until the end of time, because we cannot accept that there is something that can't make things better.  That feeling I think is simply intensified when you are special needs parent.   My typical child can assist me with troubleshooting any problem he may have - Noah cannot.  A closed beautiful book with blue eyes that looks at me with wonder - as if he wishes to tell me all the things I do not know. 

Noah lay finally sound asleep at nearly 10am after being up frequently in the night, snoring finally peacefully.  And for the next twenty minutes I can listen to him on the monitor without a worry that something is wrong with him, or that his monitor will trigger an alarm.   Those twenty minutes for me to rest, to put my guard down, to take a deep breath so that when he does awake I can then again try to figure out why he is now grinding his teeth (again), and why he's snorting when he doesn't have a cold, why his body still wants to shift to the right when he's in adapted seating devices, why his head control can be so fantastic one day, and terrible the next, why he's now decided some of his favorite foods are no longer desirable and my constant quest to feed him fast food because right now that's what motivates him to chow down so he doesn't lose weight and maintains a caloric intake that he needs for his tiny little body.

I am hoping that maybe an acupuncture appointment I made today will assist Noah with his bruxism and increased sleeping difficulties.  He tends to respond well to holistic forms of treatment favorably - I have my fingers crossed... maybe it will work?  Maybe it won't. 

I've also started the process of obtaining Noah a Dynamic Movement Orthoses (commonly referred to as a DMO), it is a specialized suit made in London customized to Noah's movement.  A series of 40 measurements are taken, it's notated on how he moves and what panels might assist him with discouraging scissoring of legs, and trunk support, it takes about three weeks to make, it's then shipped to Boston and then Boston ships it here to us.  It's rather quite a process, and requires Medicaid funding.  Generally, however Medicaid funding is a bit easier when you are dealing with Orthotic and Speech needs than other types of Medicaid funded codes.  So, I don't expect that Medicaid will block this for Noah - but one never knows anymore with them so I hate to get overly confident. 

The goal with the DMO is that it will give Noah more body awareness or something called proprioception.  It is believed that with increased proprioception feedback that a child like Noah can use their body more effectively and with that positive compression feedback help the brain to build pathways to strengthen trunk, balance and posture. I am hoping that it will also assist him at hippotherapy.  While he has had some really great sessions, he's also had some equally concerning ones - most recently being the last.  If the volunteers on staff on any given day aren't familiar with Noah it can often lead to a nail biting session for mom as I watch others not be mindful of his head and it snaps completely backward without someone assisting him or pushing it forward, something I do worry could lead to an injury.  Or his trunk can collapse completely inward and he becomes a curled up ball on a horse.   Other times volunteers are great and understand exactly how they must hold him - but you never really know from week to week who the volunteers will be.   Since I can't train a crew myself my choices are terminate a therapy that isn't consistent with his needs (that he also happens to love and adore), or see if there is any way that I can help make him stronger so he's not at risk with people who have just met him for the very first time and don't know how strong and unpredictable his tone can be. 
Example of how a DMO can assist with posture/tone
Noah has also outgrown his S.W.A.S.H. Brace, so I had him re-measured for a new one.  I'll be honest he's not a complete fan of it, so it's use is often limited.  He hates things that restrict him and prevent him from what little movement he does have.  He certainly wouldn't tolerate it while laying on the floor as it would prohibit him from rolling room to room something he insists on doing.  Now that Noah is older people will walk into my home often be critical that he's six and still primarily laying on the floor, but the feedback he craves and desires is from being on the floor.  He is not yet proficient in his power wheelchair and for him - freedom means being on the floor so he can get around in his own way.   To take that away from him and force him to sit in a wheelchair all day at this point in time would be cruel. 
S.W.A.S.H Brace
 So I expect that the S.W.A.S.H. will primarily be used on trips to the zoo or recreational activities where he is out and about in his wheelchair.   It's not always perfect, it's not always what the experts suggest and recommend for daily usage, but we're doing the best we can do.  It has always been our goal to give Noah a happy life, and not force him into things that crush his spirit and cause him to be distraught or upset.

I'm also trying to work on Noah's current wheelchair challenges.  We are really excited about Noah's new Convaid Trekker, but it needs some essential accessories before I can actively use it with him in public and with transportation.   I really hope they come soon because I'm at my wits end trying to make the model I'm using currently work. I hate the harness which chokes him when he slides down (I'm attempting to beg the DME to order him something else but that could take up to 90 days or more) and I don't have $239 out of pocket just for one accessory to buy it on my own.  I'm always at the mercy primarily of people's goodwill or Medicaid.  I always know that I'm up a creek otherwise.  I'm also trying to get a piece ordered for Noah's Leckey Mygo.  Noah's right arm wants to get stuck inbetween the lateral and then he twists it which is starting to distort how he carries that one arm.  Troubling for sure, because I think I can fix that.  But I need a lateral band that goes across the chest which would make it impossible for him to get his arm stuck inside the lateral piece.  Something I also have to wait and see if the DME will obtain for him through insurance.

I also am working on trialing the Ottobock Jockey - something that will spread Noah's legs in a seated position and I hope will assist with discouraging hip migration.  That will arrive June 9th, I hope that the DME will give me about 30 days to work with the device so I can see it's pros and cons not just for Noah but for other children like him.  I've become rather an equipment addict because I know that equipment often holds the key to a child's success, independence, comfort and personal growth and ability to participate in the world around you, it must be comfortable, safe, functional and meet each child's individual supportive needs.  And some equipment out there in pictures looks great and looks perfect until you get your hands on it and realize a vendor's idea of "microfiber soft upholstery" is not at all what real microfiber is and it will send most kids to sensory meltdown land.  If I like the product then the next hurdle is a Medicaid request, and I have to then balance Noah's current needs with a Mygo versus a Jockey as Medicaid likely wouldn't fund both within a 3-5 year time span, and they would in Noah's world serve two different functions.  Noah has some growth left in his current Mygo but he won't make it another three years in it.  Sad Medicaid doesn't always recognize that each piece of equipment has it's own individual purpose in Noah's day - especially for children who are as physically involved as Noah is. 
Ottobock Krabat Jockey
I just keep troubleshooting because it's really the only option I have.  Maybe I'll get it right.... maybe I won't.   But if there is anything behind the power of intention then I'll keep at it. 


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

Sunday, May 10, 2015

Mother's Day Weekend 2015

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I was granted a scholarship to attend Mother's Day Tea this year, something I was excited about as I wouldn't have financially been able to attend otherwise.   I took Chris along this time.  He probably felt a teeny bit out of place amongst mostly women, but he's such an incredibly good sport.   I was hoping I'd see my friend Grace whom I had met at Mother's Day Tea last year.  Two strangers standing in line and we formed a friendship.  I lost touch with Grace over the last year - it's so hard to keep up with regular phone contact when you have a child like Noah.   It's certainly not a because I don't try - it's just easier in my life to correspond via a quick email, than find time to often chat on the phone - and sweet Grace had no access to a computer.  No excuse I know, I had just anticipated that our paths would cross again.   I even gave Chris a picture that we had taken last year so he'd help me look for her, but to no avail she didn't attend this year.   I pray and hope she's okay, and hope to write her a letter to send in the mail. 

This year's theme was Chocolate Therapy.   Ideally I wish it was truly that easy for special needs parents - I'd buy up all the chocolate I could find to easy the daily demands of special needs parenting.  But it was nice to indulge in some sweets - it certainly made Chris' day who likely found the chocolate element the best part of the event.  Yet, I could see it on his face that every mother's story, and every family he seen a mirror of our own lives.   That connection you can only find when you are in a room full of people who walk the same journey as you do.  
Noah's Mommy & Daddy at Mother's Tea
It was neat to see pictures from last year's event projected on a large screen, memories from a year ago.   People that mean so much to me.  I met new friends this year.  I had the pleasure of meeting some really sweet mothers, all with children who have Down Syndrome.  And those children made me smile so big.   So animated and full of sweet character as they performed in the yearly fashion show by the Gap.   They really made the day extra special, it was a true pleasure to meet them and their wonderful mothers. 

This was the first year that Luke verbally wished me "Happy Mother's Day"  the first child to speak the words, although I know Noah has been in his heart telling me that for years.   A handful of posies sit tucked safely in the garage shielded from the second year in a row of Mother's Day snow, and a t-shirt with a card awaited me today.   I invited my own mom to brunch with the family at Bone Fish Grill - a place we've grown to really enjoy for special occasions.   It was very busy, and Noah had literally a five minute wait if that, we thought we could wait outside but Noah thinks that means we're leaving so he screams at the top of his lungs instantly.  And of course stops as soon as he realizes we're being seated.  Much like an off and on switch with his emotions.  

His desert came early - before all of our other meals; creme brulee, decorated with whip cream and three blueberries.  As soon as he seen it he was done with the pureed chicken pot pie that I pureed for him at home and packed to take with us.  A very bad sign since none of us had received our plates, it meant that Noah would finish before we even begun and he demands to leave a restaurant promptly upon finishing regardless of where anyone else is at with their meals.   It's always been since the day he was born a time dance that we do in public places with him.  Sometimes we get it right - sometimes we get the timing very wrong.   Today Chris found himself eating his meal from a box on the ride home in the car.   Luke, equally as patient boxed up his meal, knowing the drill, with zero complaint coming home to finish his mac and cheese from a box at our kitchen table.   None of us holding it against Noah that this is just how he is. 

Might not sound like the most magical of Mother's Days, but it really was.  Because this is the beautiful dance that I do each and everyday.  Balancing the needs of my children before all else.  That's my job, and the perks are the smiles I receive from my two boys when I am able to make their days bright. 

There is a reason that some people think they can do anything.... they listened to their Mothers.

Happy Mother's Day,


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

Friday, May 8, 2015

Wrapped in Love

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I'm trying to balance the negative with the positive this week.  The final financial blow (don't they say things come in disaster's of three?).  We faced our furnace dying in the middle of a snow storm, forced to retreat to a hotel for warmth for nearly 24 hours.  Four days later a near electrical fire in our utility box, requiring a whole new installation and box... four weeks later on the very first nice day we've had all year and we realized that our AC also chose to die, resulting in the only option that was left available to us borrowing from my mom who has no job, no savings or retirement account and only a personal credit card to come to our rescue.   You can kind of imagine all those things making me feel pretty low.  Even lower I think because we are in such a terrible financial position that I have to dissolve all pride of being independent, successful, responsible, and well-educated adult, to have to ask for help of any kind.   The hardest of times for anyone - even harder when the out of pocket costs for your child with special needs cost as much a month as a mortgage payment.

But in my lowest of times, kindness is sent and serves as a reminder that at the very heart of our family - Noah is valued and loved by so many.  God must have known that I was at a particularly extra low time.  So stressed and distraught that I think it's all taking it's toll physically as for the last week my appetite has changed, for whatever reason I'm experiencing significant swallowing difficulties, neck muscle pains - I'm sure all likely a result of compounded stresses that I can do nothing about.  It always feels like I have a heavy gorilla sitting on my chest that never wants to let me up to breathe.

Noah received four very special gifts; a breathtaking quilt from Love Quilts and a soft sensory comforting dinosaur from the Butterfly Fund, and a Sunshine Box for him and his little brother, and a surprise blessing from Fighting for Families.  On my lowest of days just knowing that someone, somewhere out there is thinking of Noah and us as a family helps me get through things that are so overwhelming and are simply beyond my control. 

Noah's Love Quilt filled with beautiful patches each designed and hand cross-stitched by people from all over the world.   We picked one of the big love of Noah's life - Christmas, as theme.  The one true thing that brings him tremendous joy year-round.  You will often find Santa Claus movies playing in the middle of a July in 90 degrees, and Christmas bells on our living room floor on any given day.  If we aren't successful in making Noah happy with Mr. Tumble or his UK television shows, we know without fail that Santa will do the trick.   The quilt is so soft and plush and you can literally feel the labor of love that was poured into making it.   It's something that Noah will treasure for a lifetime.  And I think will provide memories that he will cherish forever - that one very special quilt.

And when I thought I could just crumble into a ball of tears over all that I'm trying to manage in our lives, a little box for Noah lay on the doorstep.  A box filled with tiny little butterflies, a sweet note, and a sensory soft dinosaur.   Noah instantly laying his eyes on it, he couldn't wait to touch it.  You can just look at it and know it's very unique - in fact I don't think I've ever come across a stuffed animal as soft and soothing as this one.   It is the ultimate stuffed animal for a child with special needs or one who has sensory sensitivities to touch or a fragile skin condition.
Right after lunch another box was delivered.  A package of Sunshine from the Sunshine Foundation - a stranger who has never come to know our family sponsored the boys and sent them a handful of little gifts to brighten their day.  It was especially wonderful for Luke.  It makes him feel included and just as important as Noah is when something arrives that has his name on it.  A little dinosaur, some bubbles, glow sticks, a coloring book and a matchbox car made his whole day happy.   Noah, loving his Disney planes package of pajamas, picture frames and photo books to go with his bedroom.  He was so eager to touch and feel his new gifts.

And just when I thought that no more love could arrive in a single day, UPS rings my door with a very large box - he must have seen the confusion in my face - I didn't think we were expecting anything to arrive.  I seen the label on the side of the box "Special Tomato" and knew instantly that had just received a huge blessing.  The UPS driver to my surprise knew what it was.  He shared that he too had a child the same age as Noah who was special needs and relied on equipment.  He beamed with pride as he handed me that box - this unspoken understanding between us of what that box really meant.   Sharing moments with a stranger like that is often really powerful.  Because they get it.  They live every moment of it too. 
The box contained a Hi/Low chair feeding chair from this incredible loving heart from Fighting for Families.   I would tell you it was chance - but nothing is chance.  There is no way that God would pick today out of all days to make sure I knew that although things feel like they are the lowest they could go,  that I mustn't ever give up that where there is a will there is always a way.

It was a great reminder that although at times things feel really bad, and I might fall flat on my face sometimes in life and be beyond down on my luck - at the heart of what really matters is that Noah is happy, and that others want to bring such joy into our lives.   I am forever grateful for that.  "It is the unexpected that changes our lives."  May you all know the incredible difference you have made.


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

Monday, May 4, 2015

The Unfair Fight

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Noah's appeals forms staring at me...
They have been now for 3 days.  My deadline May 27th. 

The disturbing paragraph in his denial letter has me stewing:
"If you disagree with the proposed action described above, you may appeal to the state and have a hearing with a State Administrative Law Judge.  To continue your current services you must file an appeal by the effective date above.  You should be aware that the State of Colorado and designated case management agency may attempt collection or seek to collect repayment from you for all benefits you received if you lose the appeal."

I've appealed before on Noah's behalf with Medicaid, this would be the first appeal under his CES Medicaid Waiver.  Same process with the exception that it comes with the above "warning."

What do I even say?  I have all these feelings and thoughts and they're all racing.  First, I feel it's a tactic designed to discourage any parent from challenging a decision.  Two, I read it as a threat.  You appeal, we'll find a way to come after you.  Even if I win, (because I've won before), Medicaid can file something called an Exception to Initial Decision, which overturns a Judge's Order that granted your child what was denied.  So they know that in the end no matter what (even if you win before a Judge), they can find a way to force you into losing.  And one has to wonder if I'm appealing for disposable pillowcases that are likely valued under $200, what will they try to collect in the even of a loss?  All of Noah's $37,000 allotted funds (which I'm sure would be super convenient for them given that there is a large financial stair lift request before them), or attempt collections against a special need family that has NOTHING to their name, and then garnish wages or put a judgment on their home?  Over pillowcases?  You would think no one would be that cruel or step that low right?  Think again.  I've learned that no one is my corner, and my back is always up against the wall and I'm constantly swinging.  If someone can use you as an example to discourage others from the pursuit of justice (hence the already $340,000 legal judgment against us) then they will.  They will do anything and everything to silence you and squash you like the little bug they feel you are. 

And in the middle of all this bureaucracy how is this all really serving children with special needs?   Deny help, then threaten the parents that if you appeal their denial to help your child, they come after you for money.  All these children and adults without the promised benefits that are due to them.   I am beginning to see why I am the exceptional fighter - because most everyone else doesn't pursue it.  They know it's futile.  They are scared - and likely for valid reason.  After all I am living proof - the cautionary tale. 

What kind of message do I send to everyone with a special needs child if I tell you to simply give up?  Give up because things are so much bigger than you can ever be.   But maybe that's what I need to tell you.  Maybe I need to say do what you can to protect yourself even if that means that your child will do without?  I don't know.  I feel like I'm sitting on the fence between wanting to fight and knowing it's impossible - seeing this incredible injustice without the recourse to fix any of it for myself, my child or anyone else out there walking my path.  Maybe my advice to everyone needs to be don't fight because you can never win.

The only thing that remotely brings me comfort is knowing that I am not alone, when another special needs parent reaches out and says the same thing is happening to them... I wish it wasn't happening to any of us.  I wish I had the power to change it for the better.  But I don't.  I am no one important.   My voice is not big enough.

"Life is filled with unanswered questions, but it is the courage to seek those answers that continues to give meaning to life. You can spend your life wallowing in despair, wondering why you were the one who was led towards the road strewn with pain, or you can be grateful that you are strong enough to survive it."  J.D. Stroube 


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