It just so happens, without intending to, I have read several novels about parents raising their special needs kids. "House Rules", "Windless Summer", and "The Memory Keeper's Daughter", were dramatic stories where the families really struggled with their child's special needs. In each, the fictional families were surrounded by hostile adults who judged and isolated them. One book even went to so far as to have the characters in this modern small town think the fictional girl with autism was a witch.
I am not sure if the books are inaccurate, I am really lucky, or times are changing. I prefer to think the last one. I feel so fortunate that I have never had a problem with any adult being rude or unkind to me once they understand that Noah has health problems and developmental disabilities. Maybe an occasional funny look at the grocery store when he has decided to amuse himself by squeaking like a seagull. In that instance, I am willing to believe they are just glancing over and not judging us. Special needs kids are experiencing a media blitz. Granted that means everyone wants to call Noah autistic, which isn't his diagnosis, but people I think are more aware and more compassionate.
It is an odd situation though, when someone is looking at Noah and then looking at me to explain. Sometimes I just feel that his story isn't something I need to explain to anyone and everyone we meet. Other peoples' medical histories get to be private. That may seem strange considering we write a blog about him. But I really see our purpose here to update those who know and love us, to offer compassion to those who live like us, and to offer insight to those who don't have special needs people close to them. And this sharing is on our terms and we get so much from all of you too. It isn't just to satisfy some stranger's curiosity.
I do think that I haven' yet experienced the full public scrutiny of public outings with my special needs child. Noah is only 3. People often don't notice he's non-verbal, they just think he's being shy when he doesn't respond. A temper tantrum or needing to be carried aren't too out of place for your average 3 year old.
Our sense of isolation is more self-inflicted. Noah does have some behavior issues, that are getting better, but still can make socializing so hard. We played in the backyard instead of out front yesterday because he was "too hitty". The only kid who enjoys his company is sweet little Courtney, who blew him kisses threw the fence. Other kids are scared. Kids his age and some of the older kids don't understand that he is just trying to play when he is too rough. Because, really, in that hugged-too-tightly kid's mind, it doesn't matter Noah's intent only that they didn't like it. One of the older neighbor kids, Melanie deserves a big kiss from me because she always says hi to him and interacts with him for a minute before going off to play. Our friends and neighbors are as understanding as can be. So our sense of isolation is no where near as profound as in any of the books, but we need to push Noah's chunky butt over this play skills hurdle so we can go to the playground, outside, the library without me hovering over him ready to apologize.
We are all still learning. Noah's skills are growing. He has great days at school, is getting play skills therapy from his occupational therapist, play ground help from his physical therapist. Geoff and I reinforce what he learns in these environments at home. And I am learning how to be an advocate for Noah, how to come out of my shy personality to speak up for what he needs and who he is. But I feel and hopefully this feeling won't change, that the world is ready to embrace children who don't fit the mold and who struggle. I hope so sincerely that this trend toward understanding children and parents of children with special needs continues to be warm, embracing, and inclusive to societies most vulnerable people.--Amy
