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