Here's me in that blissfully silent house again. On an informal 'respite day' thanks to grandmother on the other side of town wanting to hang out and overnight with our intrepid hero, her beloved Rukai. I waved him off in Daddy's car, and came in to find the guffawing Mr Tumble gone silent once again. Man, I love that show almost as much as he does but it sure is nice to hear nothing sometimes.
The silence is both a calm before and after the storm. Two different storms to be exact.
Today's plans involve folding and putting away some six weeks' worth of laundry which has been sitting in baskets on my desk, thus making my home office continue to be a dream. Reorganizing closet space from our move in a year and a half ago so we can actually have some room to breathe. Filling out remortgage paperwork and trying to get the bills paid. Sorting through the pile of letters and appointments and organizing what we have to do when the rollercoaster goes up that hill again in January. Plotting out my fundraising event concurrent with the London Marathon, looming in April. My to do list has a to do list. I will jam this into a day and a half because that is what time I have.
My house is a tip.
My son is extremely content.
A delicate balance, but in the tug of war, 'content' always trumps 'clean'.
My time so completely taken by ensuring Rukai's needs are met, that he is having fun, that his fun is helping him learn and progress, that I am laying the foundation for him to have a successful life and lo and behold make it in this life when my husband and I are gone. When this child without siblings is left on his own.
Everything I do, every moment of my life, every word I write, is for my son. And apparently this makes me a 'martyr mom'.
You see, there has been a shitstorm in a place I once thought was an oasis - an online community called Mighty Voices, consisting of folks who've written for The Mighty. This was a community of people all on the same page, talking about disability, advocating for themselves or for their children; some for both. We were all trying to help the world understand that disability is inherently only difference and a clear path in life should be available to everyone.
Unfortunately just the same as Democrats and Republicans will go to battle over gun control and freedom of choice, there arose a battle between disabled self advocates and parents who write about their children's disabilities because of a post which contained black humor that backfired gargantuanly. Parents who write about their disabled kids were tagged martyrs who only write to wallow in self pity about what a burden their kids are. There came a faction of warring self advocates banging the table and demanding that we only write in a certain way, shouting about all that we may not say when it comes to our own lives.
There's battle lines being drawn.
Nobody's right if everybody's wrong.*
Afraid it IS my own life, dears. Scamper back on up to the top of this post and see how entwined our lives are with our kids. How every breath I take is with the purpose to help my toddler become a teen who becomes an adult who not only contributes to society but speaks to society for and on behalf of himself.
Today he is nonverbal. Today I am his voice. Deal with it.
I am his voice because barring a sweet precious few, no one we have met to date bloody listens to his own voice. No doctor looks at Rukai and says 'good morning young man, show me what you have achieved lately?' No, no they just sit behind a clipboard and spout about 'they' and statistics and all other means of medical bullshit that takes away Rukai and sees nothing more than Down's syndrome. I am as fucked off about that as any self advocate is when they are left unheard. I get that. I really do.
But this is OUR journey. We walk it together.
And today I am his voice.
This does not mean I am trying to quash his voice (and how dare you suggest it)?
This does not mean I do not listen to his voice (and how dare you suggest it)?
I am doing everything in my very power to draw out his own voice. Yet this teaching of language and understanding and comprehension takes a far cry longer when you have a kid with a learning disability. He is going on four and has no true spoken words. This doesn't really trouble me until I sit before a pediatrician undertaking yet another box ticking exercise who then decides to label him with a 'developmental age' which corresponds to the slow language build up. What purpose does 'your four year old is actually like a one year old' serve but to knock the wind out of our sails? And I can't write about that lack of language being troubling without being labeled a martyr? I can't write about bawling my fucking eyes out in sheer frustration because yet another doctor has thrown my son away again? This makes me a martyr? Because I write about not letting anyone understimate my son?
How dare you.
I WILL write. And write. And write. I don't write for those who don't 'get' our journey. I write for those ON it. I wouldn't steal your voice, so go on and back the hell off of mine.
And today I am HIS voice.
Some days I get so saddened by the slow pace because I can see the brilliance behind his eyes. I can see the immense frustration when he fails to get something right. And he goes back and goes back and goes back until he succeeds. My pride is boundless. So today I am his voice. So that doctor, that therapist, that education coordinator can all hear him. There are checklists everywhere which deny him his progress and every word I put on paper punctures a hole through the lot. It turns them to ash.
So today I am his voice. Do not try to silence me, because by doing that today, you are actually trying to silence him.
There is a blatant home truth to the root cause of the uproar. Although black humor gets many parents - all parents, not just those with disabled kids - through many a dark moment, there are times when that same humor can fuel the fire of stereotype and harm the goal of inclusion for everyone if shared publicly. Apologies are made, and people move on, right?
The other fire that gets fueled in the shitstorm is the one where people choose sides and start every sentence with "you don't understand me because..."
You're right. I don't understand you and you don't understand me. And never the two shall meet if we censor one another. Live and let live. We actually are on the same side, despite what you may think. And I'm awfully sorry that you are so pissed off about it, that you have such a level of discontent it lifts you to bash me and call me a martyr.
To date I have written volumes about my son and I can safely say every word has educated my circle of friends to the reality of our lives together, and slowly chips away at those damaging stereotypes. This is the goal. All life has the good, the bad and the ugly. All life deserves to be recorded. All voices deserve to be heard.
One day as soon as is humanly possible you will hear Rukai's. But until then, I am his voice.
*Buffalo Springfield - For What It's Worth