Avery Grace

Avery Grace

Monday, December 5, 2011

Where I Stand

I've never been too fond of confrontation. Not that anyone is, really, but I would say that more often than not, I will choose a middle ground, and work hard to be empathetic to the experience of someone else, and try to always keep in mind that everyone is busy fighting their own battle. Standing in the middle is a weird place to be within the autism community. I never knew this before Avery's diagnosis, and wouldn't know now unless I was experiencing it, but in a world where it would make sense for us to respect each other and our struggles, there sure is a lot of discourse, arguing, VERY strong opinions and oddly enough, a lack of support rather than an abundance of it.

Whether the topic is kinds of therapies, whose kid is "harder", what really defines "disability", vaccination, big pharma, verbal vs non-verbal, supplementation, or whatever, as a parent, you are really left to make your own choices because even the doctors and specialists can't agree... which only makes the parents all the more amped up.

In the last 3 and a half years since Avery's diagnosis, we have tried several varieties of therapy, and I can assure you there are pros and cons to every one. We have sought out genetic testing, DAN protocols, homeopathy, and so on. I have spent hours and hours every single week looking for something, anything that might help and shouldn't harm her. We have changed the way we eat, drink, supplement, and altered all of our kids' medical care. Why? Because at the end of the day, NO ONE really knows what the hell is going on with our kids brains. The actual numbers of kids diagnosed today is astonishing, and the exponential growth cannot simply be explained by better diagnostic criteria. But something is going on. Be it a genetic mutation intertwined with environmental toxins, or a straight up result of the crap sprayed on our food and injected in the little bodies of those with unhealthy immune systems... its a bigger problem than "just more kids being diagnosed."

But here I stand, in the middle, not blaming any one thing in particular, which believe me, in the Autism world can be a very lonely place to reside. Some in my community can find little to no joy within their circumstance. I am not judging them. I have my very hard days and have been blasted for being overly negative or whatever.... and to that I say... WALK ONE DAY in my shoes. Then insult me. Others find Autism beautiful, and can fully accept their child with little to no sadness.... these folks are chastised as well for being in "denial" and not pursuing enough therapeutic outlets for their child.... or their child must not really be "so bad." So no matter where you stand on whatever topic you are reviewing... you are likely to be judged. Well, if that makes you feel better go right ahead. Judge me.

I wish I didn't feel compelled to write about this. I wish that Autism didn't define most every hour of my every day. I wish Avery didn't need 30+ hours of therapy, respite care, and an ass ton of supplements and medications to help her function during a 24 hour period. But since I can't change most of these facts... I can stand my ground, rally up real, raw, authentic, unconditional support for mom's like me who need it, demand good therapy and care for my child, and march forward with my head held high. I can blow off the insults, and encourage others to be empathetic to what they also do not know. Just because I have moments of despair does NOT mean I love my child any less. I am acknowledging my grief, and then moving on. Do whatever works for you and leave your judgements at the door. I am tired of feeling taken for granted and that I have to walk around on eggshells trying not to offend anybody. If you don't like me, or don't value what I am about or what I have to say, please do us both a favor and stop reading this blog, de-friend me, lose my contact info or whatever.

What I know for sure are only a few things. Autism, as I experience it, can be very challenging. I can paint the picture anyway I want, but this is one hardship that stands the test of time and endurance. On the flip side of that, I CHOOSE to find the blessings underneath the hardships, and love and adore my daughter no matter her level of functioning. What I see as a privilege, others may view as a burden, and I may do the same from time to time. I have the right to bitch, cry, and change my mind. I am grateful for the blessings and lessons she teaches me, while at the same time am saddened by the loss of who she could have been. There is always a moment of greatness and light, no matter how small, that brings me through the dark moments and sorrow. And finally, things could ALWAYS be worse. Sometimes that little fact pisses me off when I am in the depths of my own anxiety... but it is true. I am here. I get to be a mother to three beautiful girls who I love more than life itself. So if you can put all that other bullshit aside, and remember to feed the love in your life, bring joy to others, be courteous, compassionate, gracious, and set the judgements aside... maybe just maybe you can find your own fulfillment, purpose and meaning.

1 comment:

five potter said...

Love you & appreciate your authenticity!! You are an amazing mom & person!