For those of you new to the page, I owe you an apology. You’ve have entered our world, this online journey at a tumultuous time. You missed the potty training days, the time I sipped piss from a cup my child had peed in (thought it was apple juice), when Liam was a pirate, ran naked in a cape most of the day. You missed the fight for services, the humor along the way.
Lately, I am at a standstill with this community (not the page, but the community as a whole), and I struggle to cope with the dissension, the arguing, pretentiousness, self righteousness, and turmoil that rears it’s ugly head in a group of people who should be supporting one another.
I struggle to write. I think, “Maybe today is the day I write the post. Maybe today is the day I ring the bell, and invite every troll in the Western Hemisphere over for a cup of coffee.” My give a shit is long since been gone, and as much as I want to be a positive light– it has to be an honest reflection of this life– life with autism.
We’ve all heard the phrase your autism is your autism, your child’s autism is not my child’s. I’m not sure if some people understand how far that statement reaches. I’m not sure it resonates. The harsh judgements of others, the jokes, and criticisms of fellow parents tells me not everyone understands that autism is a spectrum, and where a child or person falls on that spectrum impacts the decision making and choices for that child’s care, the whole family, mental health, the outlook, and the level of support.
It is easy for some to say, “I embrace my child’s autism. I would not change my child.” And, for others, they simple can not wrap their minds around such logic. As an adult on the spectrum, I can tell you there are days I wish it would go away. There are days I wish I did not have the challenges I have. The thing is, in comparison, and I hate to compare, my struggles could be considered especially mild to so many others. Still, on any given day, to me they’re paramount, and I would give anything to be out of my own head, to be free from anxiety, worry, confusion, obsessiveness, depression, and feeling lost. Having said that, there are days, I feel none of those things, and embrace myself, completely.
I will never understand the wars we wage with one another. Change comes from within. Change. Comes. From. Within. You don’t like Autism Speaks? Do something. And, I don’t mean stand on their front lawn, or knock endlessly on their door screaming about it. You change the infrastructure, you become actively involved in the organization, and help promote an image and dialogue that better suits the community. I use Autism Speaks as an example because its always a hot topic, and it never ceases to amaze me. There are plenty who point and laugh, bitch and moan, but few who move on an action to promote real change.
If this page continues as an autism page, and make no mistake, I am NOT going anywhere, but have entertained a direction change, I have to write exactly what I’m thinking. Yes, the Liam stuff is cute. Yes, he amazes me everyday, and I am proud to be his mother. I am a purposeful person. I have to feel like I am representing our truth, and offering more than just another page about a cute kid. There are lots of cute kids.
Ghandi said be the change. Change to me is promoting productive conversations about issues that matter, not losing our voice fighting amongst ourselves, or using language to berate fellow parents.