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.

Thursday, September 8, 2016

Miracles from Heaven (Can Look Differently)

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I gave great pause to the Netflix movie that recently arrived in my mailbox; Miracles from Heaven.  It's not so much I was intentionally avoiding it, as finding the right moment in time to put myself in the proper frame of mind to watch it.  I was already was privy to reactions from other parents in the special needs community to it, perhaps I wasn't sure how I would feel myself after watching in it comparison to their feelings.  Without question if you have a child that is facing a life-threatening illness or condition, or a severe life long disability that also poses it's own set of life-threatening risks naturally as parents we pray and hope for a complete cure.  Not a temporary band-aid, not a little bit improved - but that total and complete healing miracle.
Book by Marji Jackson
The difficulty really becomes when you start comparing your miracles to the miracles of others and then you start asking yourself really detrimental questions:  "Why was their child spared and healed and not mine?"  "Why did that treatment work for another child but not mine?"  "Why did God allow that baby to go without oxygen 45 minutes and mine was only without 13, and he's profoundly disabled and the baby that 45 minutes without life and oxygen is living a normal life?"  (That last one really a true thing for me).  Early on a really wonderful lady that I've lost touch with over the years reached out to me.  A news reporter for channel 9 had given her our story when Noah was just days old in the NICU and she contacted me via email.  Her daughter, twenty years older than Noah, had survived after birth with no heart beat of breathing for the first 45 minutes of life - a miracle indeed that not only did her daughter survive, but went on to lead a normal life, talks - walks... holds down a job - even got married. Sure she had some stumbling blocks and had a portion of her brain removed to control seizure activity, but otherwise is a living miracle.  I should emphasize I expected the same would hold true for Noah.  He was born a fighter his mom equally a fighter in her own right, the odds were in his favor.  Sure they were.  How could they not be?  Months went by and even when milestones weren't being met I still convinced myself things would happen at 10 months, 18 months, 24 months, even five years later.  Because after all the possibility of a miracle can happen everyday.  In fact, sometimes I'll wake up in the morning after an incredible dream where Noah is typical in every way, talking to me and running and playing.  And for a moment I forget it's just a dream because it feels so real.

The thing is though God gave me my miracle in the days and weeks after Noah's birth.  Against all odds, with the belief that Noah didn't even have a functioning brain stem as a result of his severe anoxic brain injury, he survived when we removed him from life support.  I prayed so hard that God would spare him, and I even told God I'd take him any way that I could have him.  In my heart I accepted that I'd be okay with anything that came along with Noah if I could just please have his life - no matter how that looked.  My simple prayer was answered. Not all prayers are and I'm really blessed, so blessed that my cries for my son were heard.

Through the years I've come to accept that miracles are going to look differently for everyone.  People don't really acknowledge a miracle unless it represents full healing or a cure.  In fact many times in the past people have called me out on even titling Noah's blog Noah's Miracle since he is severely disabled and never found healing that left him fully restored and a typical child.  It is hard for others to understand and accept that Noah's Miracle came from the fact that he survived -when no one believed he had a chance.  He's still here. 

A mom still battling her own grief, challenged what about the child she lost?  Why are some granted a miracle of surviving just like Noah?  When she did not pray any less than I did, didn't beg God any less than I did.  There is no secret recipe to receiving a Miracle.  I wish there was, can you imagine how much pain it would spare all of us? Her child no less precious, no less deserving of a beautiful and full life, and cancer won.  Whether we are gifted with three minutes of life, ten years, or fifty decades, I want to believe each individual story and impact we have while we are here means something, and perhaps sometimes we've accomplished what God intended us to do with the amount of time we're given and maybe that's the real miracle.

So, I was able to watch Miracles From Heaven, without a heavy heart.  Without resentment that a family received full healing when my child did not.  I am able to find peace with the fact that miracles come in different forms.  And my miracle and your miracle aren't always going to look identical to each other.  And each day I surround myself gifts Noah has been given that serve as gentle reminders Noah's Miracle; a book re-purposed and folded to say Miracles made by a sweet friend Marji Jackson, Noah's Miracle badge that he received from a loving heart in Australia and her business called Heavenly Trimmings.  God never fails to send me reminders so that I never ever forget the incredible miracle that I have been given.
Noah's Heavenly Trimmings Miracle Badge

Many blessings and love,

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