Friday, February 3, 2017

What Would Maya Do?

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Special needs parent and advocacy is built in many layers over the course of several years.  When Noah was first born I was just clueless.  Utterly clueless on how to navigate anything special needs related.  I was just trying to survive the moment, and perhaps I continued to do just that in Noah's early years. In the beginning you're desperately trying to balance hope, faith and acceptance.  Learning the abbreviations for all the things that will become a daily routine for you is really secondary to what happens to a parent.  Now terms, like CP, OT, PT, SLP, DO, MD, DME, and ATP feel like a familiar language and if you know all of them then you're likely on the same team I am.  But it took me a long while to get my footing, to learn the in's and out's of SSI, Medicaid, Waivers, assistance programs, grants, foundations all of it.  You don't just melt into it. The process is time consuming and overwhelming at times.  Years later it still is, because you are continually learning something new all the time - and the rules will inevitably change on you when you least expect it.

It is always a humbling and honoring experience when another special needs parent looks to me for advice and support and finds importance, value and even comfort in my words with my shared experiences with Noah.  I wished in the beginning that I would have had someone's footsteps to follow in - and I didn't.  Social media was in it's early stages of existence, and bloggers like me were once upon a time rare.  I've never had someone to really turn to on this journey to say gosh what the hell would you do if you were in my shoes because I'm just at my wits end with what to do.   It's a bit like walking in the dark all by myself and then telling others guess what?  I found a way out.

I don't always have all the answers, I wish I did.  I can be walking in the dark a long time before I find my way. And lately it feels like I've been in the dark a lot.  And I have a lot of lose-end fires that seem to be burning for Noah.

I'm stressed, overwhelmed, tired, a tad directionless with what to do next, I'm disappointed in others, I know I'm alone and I'm saddened, and yet I remain hopeful and full of faith that the doors I need to open - hope that the doors of help aren't padlocked with no key.

And then I sat here thinking with all that I'm currently facing in order to help Noah, and that I'm dealing with to give him the best qualify of life I can, the challenges that come along with that - and the circumstances beyond my control that go along with special needs parenting and the continual road blocks I'm up against - what would Maya from Speechless do? 

Although Maya is a simply a sitcom character - the story line is centered around the creator Scott Silveri's life growing up with a brother who had special needs.  It's quite evident that the story line is real.  I feel it weekly almost as if our lives are being shadowed or copied.  Or marriage dynamic, our sibling dynamic, the struggles - our humor to lighten up all the hard parts, and yet our seriousness about the situation still shines through.  To outsiders it's just a one-half hour comedy - for those living with a family dynamic centered around a child with special needs - it's so much more.
It's a validation on screen that we're not crazy.  That the system hasn't driven us mad while we're trying desperately to get approvals for wheelchairs and adaptive equipment, that the struggle is real with quirky and crazy therapists, that everyday hold a new challenge for us - and they certainly won't run out of material any time soon - Speechless will have a multitude of story lines to touch upon with the journey we have with our children.  It gives us a sense of relief because we can say yes, without a doubt Speechless continues to hit it out of the ball park every week.  Even re-runs are extra special because they serve as reminders that yep you're having one of these days again - but some our days and challenges repeat themselves no matter how much they wish they didn't.

I'm not even going to try to glam it up - the reality of the last month has really knocked me to the ground.  It really would the strongest of any special needs parent.  The habitual fight to help your child, the appeals hearings, the therapists who just don't get it, the realization of those who you thought perhaps cared about your child more than they did show true colors, the constant begging - and do mean I have begged for help from others to do their jobs and help me meet Noah's needs, the endless research for avenues to pursue for help, foundations, what to do if I can't get approvals for things Noah needs.  The whole leaving no stone unturned idea is exhausting.  And yet I look at him so precious, so perfectly precious and know that I cannot quit.  Even though my soul is so tired, even though I am fighting with all that I have -

So what would Maya do?  Would she curl up in a little ball and admit defeat?  Nope.
Would she pretend that no one failed her child and turn the other cheek?  Nope.

Maya would get up, she'd brush her teeth in a bathroom with no door because when you have a child with special needs you can't fix anything when you house is falling apart.  She'd take care of everyone else before herself, and then she'd kick butt the entire day and take names.  Settling is not on the table.  Raising the white flag - not an option.  Finding and demanding better because she knows her child is worth it and so do I - absolutely.

Noah is worthy.  He's so worthy of and deserving of an amazing professional team.  And if people can't deliver that then they don't deserve me to grieve their absence in his life.  He's worthy of Medicaid recognizing he is deserving to have his basic needs met both in and out of the home.  He is deserving of sensitive, understanding and competent caseworkers that understand the drive and need behind his requests.  He is an incredible little boy.  He really is.  And I'm not just saying that because he's mine.  To know him is to experience the purest love imaginable.

So in true Maya style, she'd say oh bloody hell with all of it.  And keep moving forward.  I will too.


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