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.
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
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.