Two months ago I passed the half decade mark in running a blog about autism. I hoped when I started that I would be able to document my autistic child’s progress as xe developed and grew.
Somehow, through the efforts of others I got sidetracked. I no longer feel comfortable about blogging about xyr and that is nothing but a damn shame but it is still a reality. My wife is scared by the invective and hatred she reads in some people who disagree with me and we have an agreement now that I will not mention by gender or name any of my children.
This runs directly counter to my philosophy of trying to raise awareness of the good that can be available to parents and families of autistic people. Of the fun times – and there are many of them – as well as the heartbreaking times (and there are some of them too). I feel frustrated and angry that I have been forced by the irresponsible actions of others to not talk about the good thing I see in my life with autism. Maybe that was their reason for doing it. Who knows.
So, it was lovely this morning to see a story in my newsreader from someone who could see the good things. Who could see the obvious. Someone who chose to see the glass as half full.
The music was being performed live by two female artist of exceptional talent. Their music was sort of 70´s and 80s. They even took the risk of performing a Barry White Song, “My first , My Last, My everything” (I´m not sure that´s the real title), and they shocked me with how well they complemented his music. People were dancing. Old people and young people, but is was the “special” people who caught my eye; The down Syndrome people. They danced to the music and seemed so filled with the joy of the moment that it was contagious. I found myself dancing with them in my mind. They were laughing and moving, touching each other and their partners right at the moment when a spin or a turn was dictated by the music. As I watched I could not help but think of my own grandson, Anthony Adame, who is Autistic.
So maybe this writers choice of words wouldn’t be mine but there is no mistaking the vision of someone _who got it_ .
As I watched the crowd I noted many who looked upon these special people with sympathy and sorrow for them and their families. I know the look. I have often seen it while in the company of my own grandson Anthony. Only few ever intentionally mean to offend. Most simply do not understand the nature and condition of Down Syndrome, or Autistic people. They do not know the joy that many of these very special people have in their lives, or the wonder of living with, or being close to one of them.
Those words could’ve been lifted right out of my heart and mind. The joy is there. It exists. There is a choice that we can make as parents – do we fight a psuedo-war? A war which is simply psychological transference? Or do we see the fact that autistic (or Down Sydrome or Tourettes or Manic Depressive) people can see and experience happiness and bring joy to their families?
This isn’t a matter of religious style happiness. You don’t have to join hands with the world, hug a tree and sing Kumbya. Its really the simplest thing in the world. Its saying ‘my life is not like most peoples. I have hardship beyond what most do. My choices are limited. But look at the joy that my child/friend/grandchild/niece/nephew/cousin/child of a blogger from far away brings! Should I turn away from that? Or should I choose to participate in it?’
Its obvious isn’t it?
Left Brain Right Brain 
Bravo Kevin.
Along the same lines, I was recently thinking of all the posts written and letters sent regarding the incidents in the press as of late addressing the unpleasant behaviors of autistic children in public. I wonder how many parents take the time to post or write a letter when someone has gone out of their way to make a difference.
I have gotten in the habit of writing thank yous to companies and employers in these situations. The Delta flight attendant who did everything right when my daughter got upset on a flight. The shoe salesman who spent well over an hour with my daughter when we were looking for new school shoes. The dentist who canceled all afternoon appointments so she could spend more time working with my daughter. The hair salon owner who came in half an hour before opening the store so my daughter could get a hair cut without disruption.
Not only do I find joy in my daughter’s life, but I find angels who step forward with help and understanding. I find it comforting at times when the autism is being publicly displayed in unfortunate circumstances that someone watching understands and is wondering how they can help. It is easier and liberating to think that way rather than worrying if someone is judging.
I think that is how the dancers see it.
and you’ve done at least an angel’s work in persevering through all the invective and the muck (though some would rather say you’re more devilish….)
Yes to the joy. The hardships may be many but our reaction to them makes all the difference.
Good post.
I like mjs’s suggestion and I’m going to try to put it to work in my life as a neurotypical person.
Kev, I don’t know if you know the work of Robert Rummel-Hudson. His daughter has a congenital brain mal-formation and uses a speaking device to communicate (“The Big Box of Words”). He’s published a book called “Schuyler’s Monster” and publishes a blog, “Fighting Monsters with Rubber Swords”.
Today’s post was on Person-First Language, and reads in part:
Anyway, I recommend that you & your readers get to know him and Schuyler — different issue, but the same song.