The Day Will Come

"Bumble Boy" He could fly even though he has tiny wings.

"8.  Teach the child to learn to live without you.  How?  Overnight summer camps.  Although expensive,
      they will give confidence, skills, and a sense of independence that does not come naturally.  Parents
      can recharge their batteries. Which is imperative.  Many have sliding pay scales."


Going to Autism Conferences on a national level, really opened my eyes.  I met parents with older children, I met professionals who had been servicing this population for a long time.  Frequently I would come across an adult child with Autism trailing behind a parent.  Something about this always got to me. These young adults had no independence, or skills to handle their lives on their own at any level.  The parent was still running the show.  At 30 I didn't want my son trailing me around, and living at home waiting for my next direction.  I felt he, and many of the others were not given the dignity to have their own lives.  One day I would no longer be here. What kind of parent would I be if I raised a child completely dependent on me?

Summer camps were my method of beginning this process.  At one point I was in touch with Oliver Sachs the great neurologist and story teller/author.  My son had developed "tics" as well as having high functioning autism.  I asked Dr. Sachs for help in finding a camp.  He emailed the name of a camp which took kids with dual diagnosis'.  Amazing.  However, it was out of country and I was going through a messy divorce.  So that was not an option.  But I did find a camp in Connecticut.  He was to go for 3 weeks.  I was able to get a sliding scale fee which made it a stretch, but doable.

The first week they called me to tell me he was dehydrated because he would not eat or drink their food. I had given specific instructions about his limited diet.  After getting an IV in the ER, he decided to drink their water and eat peanut butter sandwiches.  I was beside myself, and almost went to get him.  I managed my own anxiety, and did not.  Was it an ideal camp?  Probably not.  But the 3 weeks gave me 3 weeks of solid sleep that I so desperately needed.  It was the first time I was without my son.  I had to let go, which was not my nature.  But I did.

He went back there for a second year.  The next summer to a camp in the North Woods that gave him a camp t-shirt with a giant mosquito on it that said "Blood Donor."  He was asked to leave that camp because he saw the camp pickup truck had the keys in the ignition, and took it for a spin!  Thank goodness no one was hurt, as this was his first time behind the wheel.  Then to a wonderful camp in Malibu California with all sorts of farm animals.  There he met "Mr. and Mrs. Lucky" who were turkeys the camp kept.  He fell in love with those turkeys.  He fell in love with the ocean.  All without me.

Each time he came home from a camp, he had confidence and new skills I had not taught him.  I always said: "If there comes a time when I am not providing the best environment for him, I will find a better one."  This was reinforced by his camp experiences.  He grew in ways I could not foresee. He was able to negotiate new environments, and feel secure with out me.  He was my second child.  I had a "normal" first child, so there was something to base my expectations on.  If he had been the first, I am not sure I would have known what to expect.

We had friends here who have a son the same age as ours.  He is their first.  At 24 this man lives in his room most of the time.  He has no friends, no activities of his own, and no life.  He is brilliant, drives, and could do so much.  But his family has chosen to shelter him, and therefore I feel he is kept like a pet in a cage.  They keep sending him to school for different associates degrees.  As if someday, he will get the right degree, and this will all be over.   I mentioned a group home so many times, that I think it caused the relationship to end.  But this falls under the umbrella of "better environment than I can provide."  As my son became more independent the glaring differences in our childrens' out come became evident.  I picture them with him in their senior years.  Who will take care of him when they cannot?  His siblings want nothing to do with him.  So they are not an option.  I see this so frequently.  It saddens me.

Above is "Bumble Boy" a drawing from my sketchbook.  Bumble bees have tiny wings, and defy physics with their flight.   When my son was in 1st grade I was told he would never read, write, hold a job, or be independent.  Good thing I didn't listen to that 27 year old school psychologist.  He continues to amaze me in every way.  Part of this is due to his camp experiences.  Did he want to go to summer camp?  Noooooooo!!!  At first I told him "All kids go to summer camp."  So I stretched the truth a bit.  Thank goodness his older sister had gone to YMCA camps, and he remembered that.  Thanks big Sis for leading the way.  

With my recent diagnosis, I am able to put my head on my pillow at night and sleep knowing he can function without me.  If he was dependent like the man I mentioned-I would be sleepless in Albuquerque.

Thanks for reading.
Each day is a gift.  Open now.
xo,
Suz