Being a parent is not a job for the faint hearted. Being a parent of a 19 year old with severe autism is not a job for the faint hearted or the faint minded.
The word freedom takes on new meaning.
What does freedom look like? What is it? Freedom to me would mean an unbridled enthusiastic emergence into a world that has no boundaries or boundaries only of your choice. Freedom to get up when you want, freedom from worry, freedom from the day to day grind of reporting in to a job or boss. Seeing new things, doing new things, freedom to choose what your day would look like.
For Andrew, there is only the freedom we afford him. The freedom to work on new tasks, the freedom to watch a movie, eat a snack when he wants, but he lacks many basic freedoms because of the level of his disability. He needs to get up at a certain time, because to allow him the 'freedom' not to means time to do unproductive things, like taking the hems out of his clothing or shredding papers. Freedom for him is canceled out by a need to be engaged in more positive activities. But perhaps if he could speak he would like to be free to rip up papers and take some hems out. That is his view of freedom, but unfortunately society does not smile on those activities.
So it is that we establish a system of "artificial freedoms" - creating a schedule of our choosing, not his, that allows him to choose or put in order those activities he clearly does not want to do. What is he choosing? I believe this is merely giving him the opportunity to delay those activities to the end of the list that he finds most abhorrent, putting the least abhorrent first. Is that freedom?
The voice of reason is also yelling in my other ear and to that voice of reason I answer --- yes I know there are things that must be enforced for safety and well being and I am fully on board with all of that. But to create a "leisure schedule" of someone elses choosing and call it choice seems absurd.
I can never and will never fully decipher the WHY of things - that establishes that people with autism must learn to: Make eye contact firmly and for prolonged periods of time (I don't), be willing to engage with all sorts of individuals who tell them what to do on a daily basis --and be cooperative 100% of the time -- I don't - does anyone?
There is such an utter lack of individuality and personalization to this disabled community it is no wonder that individuals on the severe end of the spectrum implode and explode. They have no other way to show that they are really ticked off and tired of being manipulated. It is kind of an exaggerated "Can you hear me now?"
I am grateful every day for my ability to communicate by speech or other means, - and yet frustrated that no one wants to think outside the box, and consider possibilities that veer off the mundane and conservative. Old ideas for a bygone time.
|Andrew's beautiful ribbon - made from shredded and dyed cotton. Choice! yes...|
The key I believe for teens and adults with autism is to establish by way of observation those activities that individuals with autism "enjoy" on their own, tweak them slightly to make them less destructive and more productive, and then when this process has been completed, embed these activities in a series of choices. That would to me, signify freedom of choice - an ability for someone who is disabled and nonverbal to exercise their rights to choice.
Society as a whole, is quite a goody two shoes pompous, and uninformed parade. People with autism "should" do this or that or the other thing. I always say WHY - WHY- WHY - if I color outside the lines, why can't they? As long as they are hurting no one in their exploration to be human in their own way - why do we feel the need to restrict, control and corral creative spirits?
I am thankful for my hands, my voice, my eyes and my ears, and I relish in the little things. Last night I was captivated by the moon surrounded and suspended in wisps of clouds, shining like a globe above the yard - I am thankful I am given this choice to view this spectacular show of nature and that no one was calling me, setting off a timer or otherwise telling me I have outstayed my allotted time to head to bed.
I am afraid I would fail again and again if I were to be corralled in that way...
Color outside the box and when you can and if you can let individuals with disabilities do the same...