Ever since we knew something was up with Caden I feel as though there has been nothing but decisions, it becomes overwhelming at times. This has only escalated since his official diagnosis last summer. Do we want him to have a genetic work-up? Do we want him to be in this study or that study? Do we want him to be assessed for funding for IBI? Do we want occupational therapy? Do we want private speech therapy? Do we want Ethan to involved in sibling workshops? Which parent groups do we need to be involved in? When do we want Caden to start school? What school? And don't get me started on the paperwork, stacks of paperwork for every agency and level of government who all seem to need something different from each other. And the language of the paperwork may as well be Latin. Or Greek. If it was Greek Ryan could have translated it and we may have had a chance of understanding the paperwork. We are smart people, some of this paperwork made me feel very stupid. Often its wording felt degrading and as though it didn't apply to me or my family, kept referring to my child as "severely disabled". Riiight. Awesome.
I have felt more overwhelmed with the "system" than I ever have with my child's autism. I do want to mention that all the doctors, nurses, therapist, social workers that we have dealt with have been nothing short of amazing. Compassionate and helpful and have always been wonderful with Caden and ourselves. I know that they are bound by the system as much as we are and that it can be a frustrating place for them as well. My "rant" is not in anyway directed at those people. But damn. Get it together people. And why does it vary so much from province to province? I deal with logistics every day, it is my job to find ways of doing things quickly and efficiently. This system that keeps bouncing us around makes me want to scream and stamp my feet like a three year old. I do not have the answers to everything but there has to be a better way. Life is stressful enough. Why am I forced to answer the same questions over and over? Why can't you share information? I will sign a form releasing that information, to save me from the task of answering the same questions over and over. People may ask why is that such a hardship? It's just a few questions. You have to understand that these are long questionnaires that take two to three hours to complete. Sometimes more. They are draining. Every time I am forced to answer the same question (although possibly phrased slightly differently) I am forced to face that my child is no where close developmentally to his peers. And every time it digs in my heart a little more. Don't get me wrong, I don't want to live my life with my head stuck in the sand. I want to tackle this with my eyes wide open. But every time I settle into a bit of "normal" even if it is just a normal for us, I am reminded by something or someone that we are so far from normal, I can't even see normal. Fuck. Sometimes I like to pretend that we are just like everyone else. Sometimes I want a little fairy dust; is that so wrong? Denial can be good for the soul. Ignorance is bliss. Blah, blah, blah.
We have had to make some decisions lately concerning our son and this has been weighing on my mind and heart lately. (I just read through what I wrote, not my most "uplifting" post.) But I feel better now. Thanks for letting me rant, thanks for reading it. Maybe one day we will be able to demand that kind of change. I would like to think we could.
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