Thursday, April 21, 2011

You Are Not Alone

"The Administrator"  painted at 14.
There were some pretty painful times for me when my son was growing up.  Family, neighbors, friends lost because they couldn't handle my sons behaviors.  I felt pretty isolated, and it wasn't just a feeling.
A speech therapist asked me if I wanted to meet another mother with a son who had "Aspergers" in our town.  "You mean there's another one?"  I replied sounding pretty daft.  But at the time I knew no one else with a kid with Autism.  So I gave the woman my phone number.

The next day the woman called me about 10 minutes after I dropped my boy at school.  After introducing herself she said she may have to go because her son had been having difficulty in his class, and they called her almost daily to come get him.  Hmmm, someone was leading a parallel life to mine. Like a science fiction story.  And indeed the phone did "click" and it was me getting called  to pick up my son.  In the few minutes we got to talk there was an instant endearment to each other.  I didn't have to explain, there were no silent pauses after I spoke.  I could almost hear her head nodding when I told her about my son.  We agreed to meet, and she said she knew another mother with a daughter who had PDD-Nos.

That phone call turned into a parents support group I started.  There was an autism support group about 30 minutes from our farm, and I had been to that.  Those parents had children who did not speak.  My issues were about the things that came out of my son's mouth!  Like calling the principal a F'ing Idiot in front of 100 first graders.  The group I needed was for the higher end of the autism spectrum.  When I started the group, it was over coffee at Denny's.  I had landed on a planet of "my people."  They understood like no one else can.  Which is why support groups can be so supportive. hehe

Our group grew to almost 75 families in a small farm community.  We had guest speakers: MD's, PhD's, behaviorists, speech therapists, you name it.  We even had adults with Aspergers come and talk to parents.  Everyone would bring something to show and tell. Books (back then there were few), conference information, professionals they had worked with, medication updates, legislation that impacted our kids, and some times school work their child had done.  This was when they thought 1 in 10,000 kids had some form of Autism.  Now it's 1/89 boys.  The bookshelves and internet are filled with information.

The most important thing these parents brought to the group was understanding.  The need to feel accepted, understood, and listened to.  We did that for each other.  That was our bond. For those 2 hours every month we could just be who we were.  Everyone around the table understood.  We had a phone list, and used it when ever we needed a sounding board or sanity.   For the first time since my son was 2, I left the "Island of Autism" and rowed to "The Land of Understood."  I was no longer alone.

I went to Autism conferences, and the internet was just happening. I was on an Autism list serve of adults with Autism and a few parents.  When my son would go to bed, I would go to the computer to see what my "non NT's" (nuerotypical) were up to.  I met an adult woman who had autism. We became very good friends, and she became friends with my son too.  He still calls her his "Auntie Jane."  They had much more in common than she and I did.  I also met Jim Sinclair of ANI.  He wrote a very powerful piece called: "Don't Mourn For Us."  He started a summer gathering in upstate NY called "Autreat."

It's an eye opener, if you have never read it.  What Jim Sinclair showed me was not to pity my child with Autism, and not to feel sorry for myself.  The people who were in my life in my son's early years looked upon him and me as some modern day lepers.  Jim and the others at ANI had self respect, lived full lives, and were the most social people with Autism I had ever heard of.  I thank them, and Temple Grandin for putting dignity into Autism.  When they asked my son at the Autreat camp to "tape the next session." He did just that...winding police line tape all around the chairs before everyone arrived.  When the presenter came in and saw tape everywhere, she smiled from ear to ear.  So did everyone else who came into that room.  In fact they praised my son for his excellent taping job.  And so, he too was no longer alone.  He had found a place where he belonged.

I have lost touch with most of the ANI members.  As I do not have Autism.   ANI is truly a group for them.  My son at 23 doesn't have any  contacts with them.  I hope one day he does.  I understand that at his age he doesn't want to tell people.  I respect his wishes.  Most of the ANI people who shared their stories and lives with me didn't want people to "know" when they were in their 20's.  They had had enough of Special Ed, and the "short bus."  Seeming to be normal was important in their 20's.  Now that the rate of Autism is so high, I think normal is beginning to be much more "A".   The gave him a sense of belonging that I believe has enabled him to belong in places of his life today.
Untitled. From a series with a mannequin done with his art therapist.

Thanks for reading.
Each day is a gift. Open now.

PS-- on a totally different subject.  An Etsy seller who has two brothers that I have worked in the movie biz with made a video for her Blocks.   Shot in our beautiful NM. You gotta see it.  It's brilliant, the music is delightful, and I have watched it several times.  Such talent in this family. Check it out!

1 comment:

  1. It's a magical thing to one day realize you're not alone, isn't it? I'm so glad that you found support when you needed it most, life is great like that. :)