Chickens, Cats, and Dogs, and Autism

First, there are no NEW photos, because Google now wants to charge me for my blog.  I may move to another.  Sorry for no new photos.  This has thrown me for a loop.  :-(

Last year I posted a list of my "Golden Rules" of parenting your child(ren) with autism.  I will post them again at the bottom of this post.  When we got the diagnosis of Autism my son was 7.  For years I had battled with his father to get help.  Secretly I brought him to the Speech and Language Clinic at Northwestern University.  Twice a week I paid out of my hidden pocket for speech.

A gesture/sign language was started for "more, no, stop."  And what was my son's first word asking for more milkshake? "MORE!"  The flood gates opened on that milkshake day, and a new word a day started.  The connection between what he wanted and language was finally made.   One day he told his father we were going to speech, busted I was.  That was the end of that.  We limped along until the school district intervened at the start of 1st grade. I had already researched who  to see.  The school, the pediatrician, and many others had said "Autism."

By now the ex husband wouldn't hear of such a "label" put on his child.   He insisted I made him this way or he would out grow these behaviors. I joked and said if he got me some more yarn, I'd make him another one.  It was either special ed, or get out of the district.  School was insistent, and I was  no longer the bad guy.  We chose "inclusion" because that was the only choice.

We lived on the farm at this time.  My son's chicken perseveration was in full bloom.  He connected to these birds.  He loved to sit on his small lawn chair and watch them.  He talked about them and to them in monologue after monologue.  Clucking at kids in school, us, and strangers. I encouraged this relationship, sometimes wondering if it was such a good idea.  But he was gentle, caring, and loving towards these birds.

As you know, his Father was asked to leave through a court order.  So the cats/kittens could come in the house.  One kitten that my son had loved was a brown tabby: "Sylvester."  At 5 he had given Sylvester a haircut one day with safety scissors.  He had cut all his stripes off, because he wanted "a pwain cat."  A plain one.   Where was I when this happened...I don't remember.  But I do remember my parents were visiting, and my mother was sure he was to be a serial killer because of the haircut. Sylvester was none the worse for wear.  He started sleeping on my sons pillow at night in a crescent shape, cradling his red hair. 

After we left the farm we were down to 2 cats, no chickens.  There was a golden retriever puppy my friend had seen in a local pet shop. The thought of a dog caged for months drove me mad. We went to see her.  Of course we fell in love.  "Rosie" was named by my son.  She was a red Golden, almost the same color as his hair.  Rosie fell in love with him, and he with her.  She was sent for training as a service dog for a month.  When she came back she was his constant companion.  His friend when he had none.

When my son went away to a special camp, Rosie was grieving.  She sat by the front door he had walked out of for 4 weeks ago. Barely eating or drinking.  There were window lights on each side of the door that she kept a vigilant watch from.  When he returned she just about mauled him to death with love.  Really, it was a sight to see.  The joy in both of their faces was exquisite.  Rosie was his friend until she succumbed to cancer at the age of 8.

The day we put her to sleep, he was at the Vet's alone with her.  We sat in the car waiting.  We could hear him wailing from the parking lot.  It broke our hearts to hear him cry like that.  I have never heard him cry the way he did that day.   He has not gotten a dog again for several reasons.  One, he's gone all day at work. Two, most rentals don't allow dogs.  One day he will get another, I know it.   In the mean time he has learned to love through pets.  Chickens, to cats, then dogs.  I know the autism books say this is not possible.  I see the way my son loves and shows affection to his fiance.  So don't believe everything you read.

I offer a different story and perspective, as no two children are the same.  We had a visitor once who had a son with autism with her. They spent the night, and in the morning the 10 year old child was standing next to our bed with our cat in a plastic bag.  The cat survived, thank goodness.  And another friend's son who as an adult grabbed and squeezed their dog when ever he got the chance.  Their dog hid every time that young man left his room.  She was terrified of him. So you have to be the once to judge if your child is safe with pets.

+++++++++++++++++++++++++++++++++++++++++++++++++
1. Don't fall into the "bad haircut syndrome"... the child will not outgrow it.
2. Families are the bottom line. So don't expect the school district to fix it.
3. Address sensory issues. Here is an excellent link on Sensory Integration issues:
     http://sensorysmarts.com/
4.  Teach to the child's/adult's perseverations.  Use your child's favorite obsession to teach real life
      subjects. I laminated chicken pictures and we did "chicken math" to teach arithmetic.
5.  Find a behaviorist and work on your behaviors as well as the child with Autism. Consult with this
     professional as unwanted behaviors arise.
6.  Don't swim in this sea alone. Support groups for parents saved my sanity.
7.  What is so special about Special Ed?  Most programs allow bad behaviors to continue. But real life
     as an adult does not.  This goes back to rule #1.  I had to explain to our school that my son would not
     always be a school aged child.  They were surprised by this news. :-)
8.  Teach the child to learn to live without you.  How?  Over night 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.
9.  Find a program that matches the child vs. trying to make the child match the program.
10.  They need the most love when they are acting like they deserve it the least.  Love and affection
      will be accepted and reciprocated if you continue to give it.
11.  When the child is capable/ready/mature/wanting: get a pet that is ONLY the child's.  Teaching your
       child to care for this pet will teach compassion, and life skills.  This is a tricky one which is why
       it is last.
  +++++++++++++++++++++++++++++++++++++++++++++++

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

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