I wrote this blurp a while back on my personal FB page and it got me thinking:
"I think a very unique thing happens to a parent when they finally accept that they have a child with a disability....everything falls away and the only thing that matters is THAT child. As human beings most people, without realizing it really focus on shallow things (the "right" clothes, the "right" house, the "right" friends, the "right" way to act) There is a point where we as parents understand " This is NOT about me! This is about giving my child the BEST possible quality of life that they can have." It is a very humbling moment. Most people never go through something like that so I guess it is hard for them to understand how that thoroughly strips everything away. Lets face it, the public in general is uncomfortable with special needs. That "Holland" moment though makes you understand all the other families that love a special needs person, NO MATTER the disability. So I say be an Advocate but also be an Ambassador. Introduce people to our community, "our world" but understand that they will never live here until someone they love does."
This was what first got me thinking about "the planet Autism". When you have a child that is different then the norm it makes you feel VERY isolated. I feel like I live in a fish bowl but I usually don't realize it until we step out into the "real world". At home most things that can be broken already are, all of the important items are hidden or out of reach, there is easy access to the washer and steam cleaner for items that have not been deemed "no-no"s yet and the doors have deadbolt locks that need keys to open them. When we are out, I find myself missing the safe fish bowl, but if I let that feeling take over, how many things will my child miss out on? Or my typical child for that matter?
Honestly I find myself stimming a little when I get excited about something.
I am so thankful for my life and my children. I find it funny that this small tight knit community that I am happy to be a part of (yes, HAPPY) has it's own "politics". I am not interested in 'curing' my son, but helping him to emerge from himself. I have NO idea why he is autistic and to be honest I don't really think about it all that often. I think about ways to help him communicate and interact with people. I think about how to help him improve his special 'super" skills, and I think about what he sees. He understands more than I would have ever guessed. I know I am not a perfect parent (no such thing really) but I do know that I would do anything just to help my son be a part of the world. Seeing as the world is not likely to change just for him, it's my job to teach him adaptability, which is no small feat for some one on the spectrum. So, handmade signs for the grocery basket reading " The child in this basket is autistic, screaming may happen" and extra pants in hand, I try to leave my small, safe, fish bowl as often as my bravery allows.