Please don't only acknowledge autism today. Understand that for some families it is Autism Day every day. My family included. My boys both have aspergers. I have heard from so many people about how I should not "label" my children. I have two words for those people, today they will be 'shut up'. You are not helping erase the stigma, that kind of thinking is part of the reason there is stigma, that kind of thinking deters parents from getting their kids the help they need. You are essentially saying don't dare say they have autism, I am saying they should not be ashamed if they do. To me not getting an accurate diagnosis means I can't effectively help my kids because I don't know what is going on with them. Is it because they don't "look autistic"? Well then tell me what autism looks like. Oh, sorry, autism in many instances is an invisible disability. I guess we will just have to treat each other with respect not knowing what any of us are struggling with. What a concept.
I've never kept the diagnosis away from my boys, they have known as long as I have known. I am always honest and upfront with them, about everything. Instead I have taught them what autism is and that we all have our own story and it's okay. I hope they always embrace their autism as part of them. It is their story, I have no right to keep that from them. That being said, when it comes to their peers, I have left it up to them to tell whomever they want, whenever they have wanted to, with the option that I can help them and we can make it as grand or as simple as they chose. They have on their own, in their time told different peer groups and it was a non-issue. As insignificant as anyone's knowledge that Susie is allergic to peanuts and Tommy has red hair. Their peers have accepted it and not given it a second thought but gained a little knowledge that "hey now I know why Adam is bothered sometimes" and "yes it is okay if Aaron has a walk about when he needs it." Oh if the world would be so accepting as a child. Somewhere as we have grown up we have let cynicism and fear in and it has molded our beliefs.
I've have always been fiercely proud of my boys, they are amazing. They are so smart, creative, handsome and funny. They also know how to make me smile. I've never been nervous or shy to tell anyone they have aspergers, although I could do without the pity I get sometimes. I don't need anyone to say sorry when they learn this. I'm not sorry. This is who they are and I wouldn't change that, although of course I would change some of their trials, I don't want life to ever be difficult for them. I actively post on facebook about their struggles and their triumphs, probably more than some would like, because we are not ashamed or afraid of the diagnosis, and no one should be. I hope that I present myself as an open and informed enough advocate that if someone is curious they can ask me anything without fear of offending me and I will give the best answer I can. I get many many messages from people just asking for some guidance for themselves or if they can connect me with a friend of theirs. That thrills me. I wish I had more of that while we were weaving our way through the unbelievable maze of diagnosis, the health care and mental health care system, school, home, blah blah blah. What a journey then, what a journey now. It doesn't necessarily get easier as they get older, it just changes. I feel my boys have come a long way from early diagnosis until now but even though we have our routine, we deal with new things all the time and it's a challenge for us as parents to figure out a way to help them make transition to any change easier. That includes changes their bodies make as they grow, I won't even get started on puberty, which yay for us generally comes earlier to autistic kids. I know I know, routine works, but only until the routine doesn't work anymore.
Parenting autism has certainly changed who I am as a person. I'm more open, more honest, more real. I call things as I see it. I jokingly say to my fellow warrior moms that it surely must be contagious because I think I caught it from my kids. Meaning I see the world, for the most part, the way they see the world. I am always on high alert to situations that might not go well. I hear the lights buzzing, I feel the itchy clothes, I feel the struggle, which some days terrifies me. I don't necessarily divert from those situations, they need to learn to live in this world, but I do try to teach them to be alert to situations and to prepare themselves accordingly. I also sit in awe of their amazing minds, I burst watching them overcome obstacles no matter the size. I don't expect the world to have the empathy of a special needs mom. It's a strange space to sit in, seeing and feeling the the workings of autism as intimately as we tend to as ASD moms, but at the same time being typical ourselves. It causes anxiety, extreme exhaustion and very low self worth. I've often referred to myself as the sacrificial lamb, although those words physically hurt me to say, some bad days I literally lay myself down to serve the demands of autism and what sometimes feels like unconscious abuse from my boys just to get them through unscathed. The end of those day when there has been no little to no empathy or apology, it feels very sacrificial. And when you are crying in the dark reflecting on a day that logically makes no sense and you are only happy you all survived, those days, when routine didn't help and you are really just surviving in hopes that tomorrow is in fact a new day, those are also Autism Days. I sit there in the dark and try to breathe hoping the next breath doesn't bring on that long overdue anxiety attack. I contemplate having a glass of wine, which seems to be the remedy for so many moms having a "hard day" but I don't do it because man oh man if that is the answer to a hard day, I will surely become an alcoholic very quickly. It's the reason I never drink honestly. I really don't do much, wish I could write in this blog more, but damn for a lady that does nothing, I am one busy bitch. Ah, wait, I don't do much for me. Keeping my kids afloat is going to have to be considered what I do for me for now. I have lost several friends because they don't "get" my kids, I don't have enough time for them, my schedule can change completely at the drop of a hat. That burns. I see them post about World Autism Day and I really just think they don't get it.
As luck would have it, this day finds me sitting at my desk filling out a form, another form, this one for genetic testing to try and figure out Adam just a bit more. His anxiety is just so extreme, it's scary. But damn, this form is expecting me to remember ailments I had during pregnancy, when and for how long, including things like headaches. What's that? Oh yes I forgot, this is the process, sadly a huge reason parents give up. This form has been taking forever to get done, partially because it's just another reminder that my children will always have some struggles and that is an emotion that rears it's head with every appointment, every form, every assessment, big sigh. Okay, enough for this facebook post turned blog for today, Jake is calling around to get information from his siblings now, yes it's that in-depth, Aaron is you-tubing and building a model and Adam is beating the hell out of his drums in a very rhythmic math, the different drums are like numbers in a pattern. Thanks for taking the time to read this far. Now you know even more about me and us, I hope this wasn't all babbling.
Please support autism awareness by being inclusive with kids and their families, please don't judge when you see someone with a "difficult child" in the store, offer a hand instead, don't pretend you know how you would do it differently, just be kind, be like a child. Please help eliminate stigma, it scares people into not getting help.
And my message to anyone suffering with anything, share your story, the only way to eliminate stigma is to add awareness. Stigma comes from fear. There is power and healing in owning your own story and I commend anyone brave enough to do that.
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