Behind starburst eyes

Autism Speaks Needs to be Silent!

on November 13, 2013

HomeFor those of you that haven’t read it yet here is a link to the press release that Autism Speaks released on November 11th 2013 about their summit being held from Nov.12-14: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

While I am a Canadian, what is happening in the United States in regards to organizations like Autism Speaks effects us all. Why? Because of lines like: “We’ve let families split up, go broke and struggle through their days and years.” Actually, my husband and I are more in love now than ever, but thanks for assuming that we’ll get divorced because we have 2 Autistic sons! Our mutual dislike of washing dishes causes more issues for the both of us than our sons being Autistic. Seriously, literately, it’s true.  Go broke? Yes in the United States many forms of therapy are not covered or are so difficult to get covered that most families can’t access them in timely manners. Instead of using their funds for warning us that we’ll get divorced because our kids have different neuro-pathways, why not use those funds to provide grants for such therapies or to subsidize actual places that provide those therapies on a sliding scale payment plan based on proof of income and expenses? I have a secret to tell you, one that apparently has been forgotten by these people: parenting is HARD! I know, it’s a shock isn’t it? Being on call 24/7 for a minimum of 18 years, putting someone else’s needs and wants above your own every single day, figuring out how best to help a unique individual become the best person they can be and then following through even when it’s hard and your tired or sick or whatever isn’t easy. Guess what, that’s what every single parent out there is supposed to be doing anyways, regardless of the neuro-pathway configuration of their child!

“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.”

Try to escape or hurt themselves, yes those two are scary and both are things I’ve had experience in dealing with my own son, but seriously, climbing the furniture? Stripping off their clothes? Raiding the refrigerator? Those are “horrors”? Are you kidding me!!! Just this morning my neuro-typical daughter decided that a 10kg bag of flour needed to be dumped all over the kitchen, and I mean ALL OVER while I was in the bathroom. Did my eldest son have a issue with climbing the furniture? He sure did, so did his neuro-typical friend. I simply took him rock climbing to give him the same stimulation in a socially acceptable manner. Stripping off their clothes? Have you ever met a child that wanted to keep their clothes on? Do we as adults not relish the days we can have pajama days? The reason is simple, it’s more comfortable. If keeping clothing on is an issue, why not work out what fabrics the child enjoys the touch of and sew some clothes for the child? If one doesn’t have the time or knowledge of how to make clothes that’s okay, there are plenty of seamstresses that can be hired to do it for you. OR if short on funds and a seamstress is too expensive, why not contact a local high school and work out with the home ec. or fashion teacher (or whatever it’s being called currently) that some of the sewing projects done by the students are clothes for the child/ren in question?  Again there are TONS of solutions if you’re willing to look for them, and as a parent that is what your supposed to do: HELP your child to thrive! And there are plenty of parents of Autistic children that do exactly that, every single day! To say that we are existing but not living is utter horse manure!!!

My entire world is better because of my children! Each one is perfect exactly as they are. If I were to be offered “a way to eradicate their Autism” I’d refuse, wildly, passionately, whole-heartedly refuse! Why, because to do so would be to kill the child I have and replace them with someone else. I don’t want different children. I want the ones I’ve been blessed with.

I want my C exactly as he is, my bugaboo.  Who turns notes into movements so fluid and sure they bring tears to my eyes. Who runs as fast as he can, trampling anything in his way to get to his siblings when they cry. Who tucks his chin into himself, as his lashes lower and his lips turn up every time he says “Thank-you” when I tell him I’m so proud of the young man he’s becoming. Who sings offkey when listening to Green Day. The boy that looks at me with liquid pain running down his face when he’s gone past his limits and it hurts more than he thinks he can bear to be so overloaded, the boy that doesn’t always understand social settings or skills and still whispers in my ear “Is that a joke mum?” when he’s not sure about what someone said. The boy that first taught me what it was like to love unconditionally.  The boy that first taught me how to be a warrior that fights relentlessly: FOR him.

I want my N exactly as he is, my turkey. (He was born on Thanksgiving) Who looks at me while trick or treating and says “You fix everything” Who loves glitter paint, and awkwardly sticks his face in his brother’s and tries to ask him why he’s crying when C is upset. The one that loves Lightening McQueen anything. Who meticulously peels every wrapper from every crayon in the house. Who only just started to be able to deal with receiving kisses sometimes when not in the peaceful repose of sleep. Who isn’t potty trained at 3 years old, and who won’t be for an unforseen time. The boy that taught me true patience. The one that showed me that just because it’s not reciprocated in the ways I was used to didn’t mean love doesn’t exist, and to accept the ways he was comfortable expressing his love.

Both my sons are perfect, exactly as they are. As is my daughter. All three provide different parenting challenges, and all three provide moments of joy so great I look around to see if the very air around us is sparkling as bright as my heart from it all. So don’t EVER tell me I’m only existing! Don’t ever tell me that my children are a burden that I must bear! For the REAL burden is the knowledge that organizations such as Autism Speaks is held in high esteem by so many. The REAL burden is not my children, but your malignant lies and misinformation spreading like a cancer throughout our society, diminishing the ability of others to see the gifts I have been given in the shape of 2 sons.

“How long before they break?” Seriously!? I will NEVER be broken because of sons. Actually, I have been already. The mold of the selfish maiden I once was prior to my eldest son’s first breaths has been broken. In her place is a mother. A woman of untold strength, given to her through the transformation into motherhood. A woman who knows how blessed she is to be the guide to 2 such incredible individuals on their journeys in this lifetime. A woman of sharp enough mind to see past your “we feel SO bad for those stuck with such a terrible fate as being a parent to an Autistic child” to the reality that you don’t know a damn thing about MY sons. YOU are blind to the beauty of their existence, and by direct extension, the beauty of MY existence because of them. A woman of strong enough character (or just plain loud 😉 to openly state: Autism Speaks NEEDS to be SILENT!!!

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