Sunday, November 13, 2016

Feeling the Feejays!

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As a special needs parent, I occasionally hunt for items that I wish existed.  In my mind I dream up the perfect item that would solve all of Noah's problems.  And sometimes I get lucky and find that it does in fact exist.  It's not a surprise that Noah isn't fond of wearing typical shoes.  While he can tolerate Piedro orthopedic shoes (quoted at nearly $500) while he is using gait trainers and standers, he has difficulties loving shoes while we're out in public.  Winter is coming.  Slippers fall right off of his skinny, small feet.  Socks alone are too thin to keep him toasty, and wool ones make him crazy

I think I was googling Sherpa lining... when I stumbled on Feejays.  Yes, internet searches, while overly time consuming in a special needs parent's day, can prove to be worth while -

Feejays are sweatpants with super cozy, ultra plush, sherpa fabric lined feet!  The feet can also be pulled back if you'd like to set your little toes free and put on shoes to cruise outside.  For children with special needs who aren't a fan of shoes, or like Noah who also have difficulties regulating body temperature and need extra warm clothing Feejays are a must! 

I have been so impressed with them.  They wash and dry beautifully and maintain their softness.  In fact, I'm so envious of Noah's comfort in Feejays that I want a pair for each of us!  I envision us all lounging together in our Feejays sipping hot chocolate as we watch the snow fall this winter.

Feejays would make an excellent Christmas gift.  Feejays has extended an amazing offer to all of Noah's Miracle readers by offering a discount code through December 10th.  Just use "SMILE", as the discount code at checkout and it will provide 15% off your entire order! 

This is one item you'll be super excited about having under the Christmas tree this year. 
It is one of those gifts that is perfect for everyone.  I can't wait to grow Noah's collection of Feejays!

To place your order click here!


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

Tuesday, November 1, 2016

Neighborly Nightmares & Meeting Switch Witch

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Noah's 7th Halloween down in the books of special needs family history.   I feel like Noah is my constant teacher.  But instead of just giving me the answers when I'm wrong he forces me to learn via trial and error.  After six years of trying to put Noah in Halloween costumes (minimal at that), Noah just couldn't get past that dreaded sensory gag reflex that led to uncontrollable vomiting.  Year seven - I thought I'm simply torturing this poor little boy all in the name of a silly holiday ritual in which kids gather too much sugar by holding a beggar bag at someone's front door.

This year, we were blessed with a foundation who provided a Rolling Buddy costume for Noah.  A really cool airplane that attached to his wheelchair.  Noah only has one wheelchair with arm rests (because he wraps around his arms - even with arm blockers and hooks himself).  I had a base but no seat on an old model Noah had outgrown.  It took many months but I at least got a seat for an old frame.  Although it has Noah's name embroidered in the back he's acting as if it doesn't belong to him.  I suspect that the harness is not comfortable and is a sensory trigger for him - and the seat came too small - although he fits on it, the seat is make-shift at best.  The chair of Noah's dreams?  I think not.  He rejected it and thereby rejecting the only wheelchair ride he has that could even attempt to accommodate his airplane wheelchair costume.
Yet a certain sadness loomed in Noah's eyes.  An understanding of being left behind.  A look that will tug on every single heart string any mother has.  Chris and I looked at each other trying to figure out a plan.  What do we do?  We risk him gagging and being on sensory overload if we leave the house.  But create a painful childhood memory for him if we were to leave him behind.  So, the decision was made Noah would simply walk around the block with us, without a costume in the wheelchair he is currently most comfortable being in.  We took two Halloween bags, Luke was so on point one would have thought we coached him into making sure Noah was also presented with a piece of candy at each home.  Even if a neighbor thought or assumed perhaps Noah didn't need a treat, Luke was quick to say I need one for Noah.   Perhaps those words coming from an adult may have been perceived as rudeness, but out of the mouth of babes and a devoted little brother - was remarkable.

Noah full of smiles and laughter - perhaps more so as he realized Luke had his back, found his way to being fully capable of handling each time someone opened their door to greet him.  Granted, that was done with generally some significant distance as the homes in our area are full of a multitude of stairs just to get to a front door.  But we still made it work.  Noah was doing so well in fact that we went around the entire block.  The darkness and comfortable temperature likely helped minimize and defuse sensory overloads.  I must admit my neighbors go all out for Halloween - I had no idea I feel like I live in a box and haven't been able to join the masses due to Noah's needs.  One home had a set up that I swear was like watching poltergeists march back and forth in their upstairs bedroom windows.  Cool, freaky and totally effective in giving the oldest of adults goosebumps.  Who knew that such decorations even existed!  I can't say that I wasn't intrigued enough to spend an extra amount of time in their driveway watching their fake spirits pace back and forth. 

I'm not sure what it is with that big bad motion detector spider that jumps out - but that darn thing made me jump; it made Luke tear up; and Noah laugh hysterically at the fact that his little brother almost peed his pants.  Was a typical brotherly moment.

Chris wasn't exempt from his own neighborly nightmare - a man without a face standing in the middle of the street to scare a passerby. His movements so classic horror movie that really it was truly disturbing on every level.  We both wanted a way from it (him/her) quickly.  The boys likely less affected than us - ironically.  But mom and dad got the heebie jebbies.  In fact thinking about it makes me want to crawl under my covers.

The boys came home with generous amounts of candy.  Although Luke can eat candy, Noah watches with tremendous envy.  We scooped up Luke's entire loot and passed him only a mini bag of M&M's and put the rest on top of the refrigerator - out of sight out of mind.  Noah's face showed a sign of relief.  He didn't feel as if he was doing without.  And then the Switch Witch was put on my field of vision... finally like this giant light bulb went off.  The Switch Witch could come and take all the candy away and leave Noah and Luke both mutual non-edible gifts.  That is like special needs parenting perfection.

Both children on equal ground, both children get workable gifts, mom even maybe avoids an unnecessary trip to the dentist... dad scores because he can donate the candy to his work - it's like a win win for everyone!  I just might give the Switch Witch as much of an even playing field as the Tooth Fairy. 

I'm just glad we made it work.  I'm glad that after all these years that Noah didn't get sick or have to suffer through a Halloween.  That perhaps allowing Noah to be just who he is - all 365 days of the year is what he needs - and that's okay.  There is nothing saying that our Halloweens have to resemble anything "typical."  Being the norm is over-rated anyway.

-A bit of special needs unpredictability - now that's how we roll.

Looking for other creative candy donation options to dispose of candy for your non-oral eater?  Check out Candy for Heroes


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

Sunday, October 30, 2016

Follow Your Own Recipe

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Noah's specialized diet results in time consuming endeavors in the kitchen.  Nearly eight years later Noah still cannot eat anything else other than purees, puddings, cheesecakes and meltables.  And because of his high tone and athetoid movements Noah is on the move all day - burning lots of calories.  He's on his own individualized exercise program!

Noah's treating providers have always encouraged high calorie foods, healthy fats, no preservatives, no artificial dyes, and organic to give his brain optimal opportunity to keep his mind and body as healthy as possible.  So my chef skills are sometimes on hyper-drive and I'm always looking for yummy things that Noah would enjoy.

Now that we're into fall, all those warm and cozy meals are on my field of vision.  One day I woke up wanting a culinary challenge - (really because I don't have enough challenges to my day right?) In hindsight I was likely looking for a diversion to the outside stress that comes along with special needs parenting.

What's something that I could master?  Julia Child's Beef Bourguignon came to mind.  So I googled it.  I spent way too much time peeling pearled onions and braising beef... but I did it anyway.   It was okay, I mean I followed the recipe - it turned out - but it wasn't like the choir of angels I thought I'd hear singing when I took my first bite.  Noah ate it, he liked it just fine, but I could tell by his expression that it was just mediocre in his world.  Luke did his best to fish out the mushrooms and anything that could be remotely identifiable as a vegetable.  Chris - easy to please had seconds because he's just that kind of cool guy. 

Yet, even though I did everything right in the recipe I expected so much more, and I felt in some way incredibly let down by Ms. Julia Child. 

I decided to give it a second go.  But this time I decided to follow my own recipe.  I took elements from Julia's recipe.  I still braised my beef, I ditched those time consuming pearled onions, and instead I added celery, homegrown gold beets from our garden, garlic, less carrots, garlic, only 2 sliced mushrooms, I kept the bacon but changed Julia's ratio of organic red wine to beef broth, increased Julia's recommendation of flour and threw in a bay leaf and said you're all mine! 

And then angels sang at the dinner table. 

Now you're all probably out there thinking why on earth have I followed along about Noah's mommy discussing her attempts at Julia Child's Beef Bourguignon?  But really I do have a point here, I promise. 

Sometimes we're always itching to follow in someone else's "personal best" that we fail to consider that we each have our own personal best within us.  Why isn't it okay for us to follow our own recipes in life?  And have them be the best for us?  The same lessons carry over onto much of the special needs parenting journey.

Why must we measure our children against another child's personal best?  Against the recipe of milestone timelines that therapists dish out?  Compete for the same success one family found doing a particular therapy or treatment?  Allow others to tell us how our recipe should look like? I swear if I have another therapist tell how they think I should be putting my typical child in public school to offer him the experiences of a "normal" childhood implying because he has a severely disabled older brother that we've somehow short-changed his life - or insinuate that because I don't take Noah to a all day camp where they push him for 8 hours a day, cause him to cry and be in pain all in the name of "therapy" I'm libel to explode in verbal direction that I'm sure they won't appreciate.   

Our recipe can look like our own.  And that's so awesome.  In fact it's more than awesome, because we're being authentically true to ourselves and to our own children's needs.  Our form of preferred therapy for Noah can look different from traditional forms or methods, or philosophies about parenting or teaching both a typical child and a profoundly disabled child alongside each other can look different than sending our children off to public school. My recipe and your recipe can look similar or different, but the fact that they aren't exact is a wonderful and beautiful thing.  


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

Monday, October 10, 2016

A Fall From Nowhere

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A little more than forty-eight hours ago, Chris and I went downstairs to try to troubleshoot a new storage plan for Noah's adaptive equipment.  Cumbersome and bulky there is no really easy way to just tuck in a corner until it is needed in Noah's day.  After less than a five minute conversation about it, we turned around to see this little grey spot on our blond tiled floor.  As we approached it was pretty evident what it was - a baby mouse only days old, with fur but it's eyes still closed.  I thought for sure it was deceased - it wasn't moving, still and quiet it just laid there.  Until I got closer and realized it was breathing. 

My heart sank.  What on earth was I going to do with an infant abandoned mouse?  And I knew where there is one there is usually more. A thousand things ran through my mind.  Mice can carry viruses  - and what do I do with a breathing baby mouse?  In the moment I asked Chris to get a Tupperware dish and poke holes in it.  Deep down knew I only had one real option for someone like me - I had to try to save it. 

There was absolutely no trace of any other mice in the basement.  Because Noah is so medically fragile our home is pretty spotless - or at least I break my back trying to make it that way for him.  There were no droppings - no signs of anything.  It was as if he fell from the middle of nowhere - and so he did.  Upon dragging out a ladder and evaluating the top of the wall, we found a small hole in a gas line that led to the fireplace, a likely source of entry and another deceased litter mate on the ledge.  This little mouse had fallen eight feet to the hard tiled ground and survived against all odds.  A miracle in itself - I convinced myself that was a sign that this mouse had a bigger destiny - and that without a doubt it was meant to survive.

A rodent - but one with a purpose. 

Is there such a thing?  My mind said there was.

A tremendous detour in my day I rushed to the pet store, quickly threw down $25 that we needed for weekly groceries, for a critter keeper, puppy formula and paint brushes for feeding, I came home to save the day and accepted the adoption of the orphaned mouse challenge.  I figured the first twenty-four hours were critical.  If I could make it past that, then he'd be home free.  My goal:  To nurse it to independence and set it free.   I could do this.  After all I'm an expert caregiver.  Internet research said feed it every two hours, use a paint brush dipped in formula, rub its belly with a q-tip for digestion... not too bad.  And I can't deny it - I added extra tender loving strokes so it didn't feel lonely and knew that it was in some way cared about.

Although I was slightly worried as I thought maybe it might have a bloody nose, I decided it had just scratched itself accidentally and was minor.  It was very active, healthy, thriving and strong.  A fighter.  Feeds were going really well, and I faithfully woke up in the middle of the night - even in between Noah's needs in the night, which further contributed to my level of already existing sleep deprivation - just for the mouse.   Last night the mouse seemed a little bit more lethargic - but I assumed it was tired and sleeping, still active but slightly more time to get it excited.  The morning still active I gave it breakfast and then without warning it started to gasp, and have labored breathing.  Immediately I was fearful that I had done something wrong - had it aspirated while feeding? And then it just passed away in my hands - just like that.  It was over.

And then this incredibly crushing feeling of failure.  And an immediate question of purpose.  If the mouse had survived falling eight feet, only to pass away two days later, then why did God allow him to survive the fall in the first place?  I told it's little lifeless body how sorry I was.  I ached for it to come back to life. A silly mouse - that I would never want for a pet - yet I was mourning the loss or trying to foster and care for this tiny little life - less than an inch big.  his head no bigger than a fingernail.  A small helpless, blind life.  Gone.

So what is the lesson in all this?  Besides outing me as an overly sensitive and compassionate, if the end result was that it didn't make it - then why did it survive that fall anyway? 

I'm still guarding Luke and Noah's childhood.  As they both inherited their mother's sensitive nature and the overwhelming feelings of the disclosure of death is too much for either of them to process at this age for who they are.  And if I can spare their childhood just a pinch longer from true understanding of it all, then I've bought them a little more time of not to have to worry about thinking about mortality.  That lesson comes all too fast for all of us anyway.  The mouse went to be with it's family is how I explained why it suddenly disappeared from the top of the refrigerator.  A completely acceptable thing for Luke.  He only asked once and it was fine - out of sight out of mind.   Noah looked a few times for it, and then that was fine too.  And as fast as the mouse came into the picture, he left. 

Because of the circumstances I didn't have time for a proper burial - yes I did actually think about it.  I think I felt sorry for myself for most of the day in fact - that looming sense of failure - and because I really put in the effort and thought I'd be able to save it and release it.  Although in reality I worried about that too wondering how it would find shelter in time before it snowed... and perhaps I wouldn't have been able to let go of something so easily that I essentially raised... till let's say spring of next year... who am I really kidding?

I kept peeking in on it kind of hoping that death was not a final diagnosis, wishing for a resurrection - a chance for me to try again - a chance for me to do better.   Issues that I know still haunt me from Noah's birth - a redo - if only I can go back in time I tell myself - it would all be so different.  I could have saved Noah from this fate and birthed at a different hospital, insisted he not go over his due date, insist on an instant c-section not just a 13 hour, natural delivery delay, without a notarized birth plan for hospital staff to hide behind as an excuse for not meeting the standard of care - and the mouse perhaps I could have too also influenced the final outcome. 

But that's the recipe to how we carry guilt.  We carry guilt because we convince ourselves we are somehow to blame for an adverse outcome.  Even when we had nothing at all to do with the end result and it was ultimately out of our hands.

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

Monday, October 3, 2016

Speechless: More Than a One Hit Wonder

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Many of those in the special needs community (although were already rooting for Speechless) were waiting to see if the show would have ongoing and amazing content after the much anticipated first episode aired.  I must say I was as pleased with the second episode as I was the first.  Maybe even more so, as there are a variety of subjects, situations and discussions that are centered around a special needs family dynamic. 

In episode two, the viewer got a preview into what I like to call the "special needs mom push back," caregiver topics such as toileting assistance, financial strain homestead issues, and the independent thinking and personality that many assume who are non-verbal don't have, and the hardest one - trying to let go - "when he is your entire world."

The classic mom push back was hilarious to watch.  While most of us are not privileged enough to have the opportunity to lecture the school principal on how the "push back" actually works, the scene provide a sense of authenticity to the real show down that really exists and occurs quite frequently when you are advocating for your child with a disability.  The dad, whom viewers may think is along for the ride, with his head flipping backwards and arms crossed, simply signals that he knows that his wife's inner bitch has been unleashed and he just stands back to watch the show  - a show he fully supports. 

Two parts although still light-hearted in their presentation still had a way of pulling on those familiar heartstrings.  When JJ's new aide, Kenneth, is about to embark on a solo journey for the day with him, and his mother is having a hard time trusting and letting go.  (And not without undue concern as the aide temporarily drives off without him) - and knowing that you at some point have to trust another stranger and human being with the most precious and protected person - that sweet child that has indeed become your entire world.  Certainly as Noah gets older, my mind has not gone there a time or two.  For the most part I don't go there often because those feelings of ever being able to trust someone else to care for Noah with the same safety, tenderness and care that I do - feels unlikely and impossible at the moment.  But, that doesn't mean that I don't remain open for the right person to walk into his life one day who might come close to fitting my long list of caregiver requirements.

An equally touching yet complicated moment was when JJ's mother, Maya, walked in on a conversation between JJ and his aide in the bathroom.  A moment that gave her some hope - not total trust - but a glimmer of hope that perhaps she indeed had made a good decision for her son.  A patient and understanding aide, Kenneth, does a superior job of reassuring JJ that he can assist with his toileting needs and would be there to help him. Fair to say that pretty much is on every special needs parent's wishlist - someone that will be there for their child who genuinely wants to assist them and give them every possible feeling of dignity that they can with what is required in 24/7 daily living needs, personal hygiene and care.

Perhaps one of the most comical parts were when the DiMeo family approached their neighbors with a realistic picture of how they'd be voted least likely to keep up with their property.   While that part of the episode may have come across snooty, careless, or unconcerned, to the average viewer - to a special needs family it's representative of the financial constraints that really limit a family to have the resources to keep up with home repairs, remodels, and time constraints like household tasks like mowing the lawn, gardening, and snow shoveling.  And in the end the perception is from neighbors is that we are stupid, lazy, or in the words of JJ's little sister, Dylan, "idiots."

Speechless hit another second episode home run - one in which has scored the show an entire season pick-up by the network.  And special needs families everywhere are celebrating.   What disability topic would you most like Speechless to cover this season?


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

Tuesday, September 27, 2016

Burnt Pancakes Becomes the Theme

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Our alpha dog has decided that in course of the last nine weeks that she's found the need to be distraught in the night.  Thankfully, this hasn't manifested into whines, cries or barks, but she exhibits anxiety panic-like attacks that can last for hours on end with panting and excessive banging, scratching at pens or crates, or if we let her free to roam she pretends she is a race car without a finish line.  With what little Noah does sleep, she disrupts any potential quality of sleep he gets and makes him stir.  The vet says this is common in older dogs that start to lose their vision - super, I think to myself as I calmly rush to the nearest holistic vet store and buy anti-anxiety drops and CBD treats in an effort to naturally cool her jets.  And overtired me thought a quick shower before a telephone conference and Noah's speech therapy sounded grand after even less sleep that Noah has accustomed me to. And by quick, like seven minutes tops. 

Sad, that special needs parents like myself relish even a quick shower as a treat in our day.  Things were going great, I managed not to get any soap in my eyes, and had a chance to squeegee the water off the glass doors even - until Luke rounded the corner and said slyly... "see what I did."  And I'm thinking oh yeah, like you lined up all your match box cars in a row, or colored a Dory picture in your room... "I turned on the oven" he whispers.  "I did it."

I sprint to kitchen like a cheetah, dripping with nothing more than a towel and a t-shirt, a sense of relief overcomes me when I see nothing at all on the stove's surface, until I look up and realize the smoke plume from the microwave above it.  The microwave still is counting down with over fifteen minutes left making me wonder how long this child actually set it for.  I yank it open fearful of what he decided to nuke, and find six silver dollar pancakes on a severely melted green plastic plate.  The stench quickly takes over the entire house and the smoke so incredible it's like a fog storm rolled through your living room.

All the mischievous and somewhat dangerous ideas that Noah was never able to accomplish.  Things that never crossed my mind all the naughty things that a child of age five would think to do in the seven peaceful moments his sleep deprived mother used for a shower.  All I can think of is the potential plastic fume toxins that could reach Noah - medically fragile Noah who already has enough problems to contend with.  I block Noah's door like that evil monster in the movie Poltergeist so no one can enter his bedroom until the smoke cleared and the windows relieved some of the burnt evidence, all while thinking this is the perfect theme to how my weeks have been going.  Burnt pancakes is really the perfect analogy.

I think I somehow thought the older Noah got the easier it would become for me to navigate his needs better.  Truth be told it feels much harder now. When he was a baby I could put a band-aid on the equipment needs with rigged baby strollers and toys, now that he's almost eight everything is customized, and complicated and costs thousands of dollars. And everything he needs to make his life better is met with such incredible resistance from the very programs promised and designed to help children with disabilities.  And I get up each day and fight - that is literally what I'm doing.  I'm fighting with Medicaid with waivers, with vendors with DME's - I feel like I'm fighting with the world to hear me and to help Noah.

And I have all these continual challenges that I can seem to find ways around.  Medicaid approved a new WinSlate AAC device for Noah, but since his last AAC device nearly three years ago, Medicaid has put in a mounting cap of $468.68, on the average AAC mounts cost between $1,400-$1,700 and Noah needs more than one.  Not all are universal and we are struggling wit the fact he currently has no table top mount, or manual wheelchair mount.  The only one that was approved was for his power wheelchair, and that is being repaired and altered and he can't even use it full time.  The same problem complication is really true with Noah's orthotic shoes - he needs Piedro shoes where the AFO is really built into the shoe, but because Medicaid's reimbursement rate is so low, vendors have decided they will not cover them, nor allow me to pay the difference because legally they cannot bill a family for an otherwise Medicaid covered benefit - even if Medicaid will not fund the entire purchase price.  So that leaves Noah with an appointment to be measured for shoes Thursday - but us having to fund customized shoes for him that will be around $300.  The hemorrhaging of money isn't a good time - at some point it really comes down to it simply not being possible.  So when a doctor asks me why Noah's middle toes arch or his foot bones are distorting I can kindly reply because Medicaid won't help him and we don't have the money for the hundreds it will cost out of pocket for a product that he can wear comfortably and that is not a sensory challenge for him.

The State denied Noah's VocalID - a customized voice that would be a blend of his little brother's voice and his vocalizations for Noah's AAC device, I'm appealing, but I've lost track now of how many appeals I'm on - I think it's seven, but I'm so tired to think that it could be higher.  And while my batting average for Noah is really good, the State always comes in after a favorable ruling and files an Exception to Initial Decision and wipes out the appellate process. Leaving us back to square one after all of my fighting efforts.  While I think I have a good chance at over turning the VocalID denial, I expect the State will still block me.  I had asked Noah's waiver for PPod accessories for his PPod.  Earlier this year the State simply anticipated I might ask for them and entered a denial without me even submitting a request with required paperwork, citing SSA 6505, which prohibits the purchase of any adapted equipment where payment is sent directly out of the country for the item.  The PPod at that time existed solely in the UK.  Since that time Drive Medical who bought SOS in January of 2015, decided to distribute and sell the product in the US.  A move that happened in July of this year.  However they are primarily allowing an online vendor to distribute it, and the costs are a bit more challenging ironically than they would have been with a direct UK purchase.  Knowing that the State could no longer hide behind SSA 6505, I put in a formal written request for it.  I was home free for a half an hour when I got an email saying it had been approved and was being sent to billing for Noah, until I received another email saying they had made a mistake and were sending it on to the State panel for further determination and review.   I temporarily celebrated during that half hour, but I kind of already knew the other shoe was about to drop.  As really sad as it is, I've come to expect the bad news, and rarely know what to do with myself these days if anything is easy or uncomplicated.

And in my spare time, I do silly things like take on the idea that I can change federally funded programs into recognizing that families like ours need more help with TANF, SNAP, and family Medicaid, and that new IRS guidelines should be an influencing factor in policy making, or that I somehow can get Medicaid Caps eliminated for certain funding categories or find better justice for the disabled community and all these families who feel so defeated and don't have the fight drive that I have. I don't know what it is about my personality that just can't walk away from it all - I mean clearly I have my hands full just with Noah's needs that never come easy, for me to think I can take on the world almost feels like insanity. I think it just comes from deep down where I just don't want another parent to walk in my footsteps and have to fight the same battles I have had to or have shed the same tears in the name of helping their child.  I want to spare everyone from this bottomless feeling where hope gets lost.  I don't know that I can save anyone though from this pain, I want to, it's not easy to wake up every morning and know for every email you read that it's a problem you have to sort for your child, or to have the weight of the world on your shoulders to find a way to financially fund something he needs that isn't as simple as going to Target for.

So burnt pancakes it is...


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

Friday, September 9, 2016

ABC's New Sitcom Speechless Nails It!

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I won't try to minimize my growing excitement for the new ABC Sitcom Comedy, Speechless which makes its television debut September 21st.  It is incredibly rare when a television network takes on programming that doesn't just simply throw in a token disability in the plot but showcases the disability and makes the person the primary focus in the show.  The trailers have been a fantastic tease offering a realistic but hilarious glimpse into situations that are tremendously relatable if you have a child with special needs, - especially one who is both in a wheelchair and non-verbal like Noah.  ABC has done a great job with building anticipation and a developing a fan base that I think will not only appeal to special needs families but also to typical families who may not otherwise be familiar with many of the realistic challenges that we face daily.  Some situations so absurd one might think we are exaggerating for comedic effect - but oh how true it all is. 

I had the opportunity to view the first episode today, via an Amazon invitation.  Wasn't about to pass that up on a Friday.  Nope this special needs mom spent nearly 22 minutes (commercial free) laughing and relating to a day in a life that resembles my own.  And then I spent another nearly twenty-two minutes watching it again with Noah, his grandmother and Luke.  They all were glued to it just as much as I was - Noah uniquely so.  He has never in his life seen a family dynamic that resembles our own.  He laughed and was engrossed in the show.

*** Spoil Alert ***
Speechless opens as the family moves in order to provide more resources for their disabled oldest son, JJ DiMeo, played by Micah Fowler, who also in real life has cerebral palsy.  The house is less than ideal.  It's doors are falling off the frames, the deck is missing, they have a cell tower camouflaged as a tree in the backyard, and their home backs up to a very busy street and train tracks.  Yet in the name in the spirit of giving their special needs child all the opportunities that he deserves the entire family bites the bullet and pulls together to do the best they can with these sets of homestead circumstances.

Minnie Driver plays Maya DiMeo.  She is extraordinary in her role.  It is as if she literally shadowed a special needs mother for months on end, or had her own special needs child herself.  Her firm and unique understanding of her character is quite amazing.  She accurately depicts the fierce advocate drive that you find in most special needs mothers, mixed with a dash of humor, and sense of authenticity that makes her feel as if she is you.  Minnie was an excellent choice, and I'm going to look forward to watching her speed from place to place during each episode rooting her on as she continues to avoid countless and likely well deserving speeding tickets all in the name of awareness, disability rights, and unconditional love for her entire family.

Minnie's character without so much batting an eye cares very little about her reputation of being "that aggressive and difficult mom," but instead embraces it and wears the title proudly on her sleeve.  I enjoyed how she depicted our drive for change out there on the lawn of the school with her paper petition scouting for signatures all the while showing no remorse for stepping on the schools freshly planted flowers after realizing that her son's only way of entering the school building was by way of a trash ramp that the school district found was "acceptable alternative access."  Minnie's "schooling" of the staff became a comical scene that not only does a great job of demonstrating many of the illogical and unfair challenges we face as parents of children with disabilities, but does a great job of giving all viewers regardless of their family dynamic something to really think about and digest.  And that is the biggest thing the disability community could ever hope for with a sitcom like this.  It is a teaching tool for people.  I hope that it gives all viewers a half hour of entertainment mixed with food for thought so the next time they walk into someone like us they know what walking in our shoes really is all about.

John Ross Bowie, who plays Jimmy DiMeo - JJ's Dad does a great job of being Minnie's parental sidekick.  You can tell his character is quite familiar with what will push his wife's buttons like the use of the word "cripple."  You can see him roll his eyes and his body language says you just dug your own grave because my wife is about to have a field day with you.   A strong family man who stands proudly behind his wife's efforts and knows that no matter her choices that at the heart of it all she's doing the best she can.

In the first episode we get to see the classic nut case therapist.  We've all been there.  I've been there way too many times I'm not even sure how I have survived some of them or Noah either... It is good to see that the show is incorporating all real elements to things that we face daily - including a batty, overexcited therapist that would love nothing more than to be fired because she just isn't in to her job - your kid - or your family. 

The show also pokes fun at the classic "you are an inspiration," and "pretending to be inclusive" themes.  On JJ's first day of school the family is greeted by the school principal who thinks that comparing the school's change of mascot is the equivalent to representing inclusion.  The mascot has been changed from a Viking with its connotations of male aggression to a sea slug which has both male and female genitalia.  The awkwardness in Minnie's expression and her quick change of topic classic of how a special needs parent would react to the strange insinuation that inclusion was in any way related to a sea slug that possessed both genders.

The first episode also explores secondary challenges to special needs parenting.  I always say when you have a child with a disability the entire family has a disability and it will undoubtedly effect each family member differently.  Sibling feelings and emotions are explored, bonds are shown to be powerful within the family unit, and an overall showing of support makes the family strong. 

So how real is Speechless in representing the special needs community?  I'd say it nailed it - at least for me.
  • The DiMeo's move because they are trying to offer their child with special needs better resources and opportunities - we moved to for the same reasons.
  • They move into maybe a less than ideal house - needs work, off a busy street and has a camoflaughed cell tower - well isn't that a coincidence - we bought a house that needed a little bit of work, we live off a busy street and my City Council gifted us with a cell tower camoflaughed as a church bell tower just a short few weeks ago (note the sarcasm in my cell tower joy) and I'm not at all as excited about how many bars may now be on my cell phone like Mr. DiMeo is.
  • The Dimeyo's have a marriage dynamic similar to ours - I'm the mommy pit bull the daddy backs up the mommy at all times and can see the volcano about to erupt when you use words like cripple or retard... or deny our child basic rights to access.  We also bounce things off each other and provide a united front because we know our child's quality of life is dependent upon it.
  • We have a sibling dynamic which sometimes is challenging when you must devote so much time and energy to the child that needs you the most that your other child(ren) equally deserving of extra attention can feel short changed.
  • While I do certainly have a need for speed I've only been pulled over once (and ticketed) coming home from Noah's hippotherapy.  *Note to self * The next time a police offer asks if you if you can financially afford the ticket he's about to give you - say NO, not yes!"  * In all honesty I'm usually aware of the speed limit - but have bumped up my clock in my car to be 15 minutes ahead to keep me "on time."
  • I've been known to start a petition or two, or three, or four.  Or go on public television... or give interviews to papers... or well whatever needs to be done in the name of advocating for my child.  Although I don't think I've crushed any flowers in the process, but I likely wouldn't feel guilty about it either if I had.  (Way to go Minnie!)
  • I'm not perfect and I'm still balancing parenting two children with very two differently physical abilities and needs.  I don't always get it right, but I'm trying hard and so is JJ's mother on Speechless.
  • Noah is cognitively aware and just because he uses an AAC device for his communication does not mean he doesn't have a voice.  Noah recently got a new speech therapist Ben, who we both really like.  Ben is really cool - even when I couldn't understand one day what Luke was saying and I asked Ben if he happened to make sense of what Noah's little brother was trying to say.  And he sweetly replied with a smile on his face.  "He is saying God Damn."  Rather than pointing fingers at the parent Ben seemed understanding - I've since found the source of that phrase in a children's show Luke has on DVD titled Aussie and Ted's Great Australian Adventure.   But Ben had little hesitation in interpreting for me, so if Noah decided he wanted to say the word "shit," I doubt Ben would purposefully sensor him as JJ's therapist chose to on the first day of class.
  • Just because Noah is in a wheelchair doesn't' mean you have to treat him like he's a superstar.  He's not a celebrity and like JJ you don't have to vote for him as president.  (Although JJ does certainly get creative with that suggestion in order to rescue his little brother from a problematic situation on an amusement ride).
  • We go lots of places that don't have accessible ramps or rides or anything that is disability friendly... and like Minnie's character I'm always quick to point out the shortcomings of any establishment that fails to meet those needs.
The show will be a big win with special needs families and something like this is so overdue in television programming.  I hope to see this sitcom have a long run on the network.  Don't forget to tune in September 21st, and for those of you who can't wait.. you can watch it at this link. You won't be disappointed.


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