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."
http://www.autreat.com/dont_mourn.html

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.
xo,
Suz


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!
http://www.youtube.com/watch?v=DGdrOelyj5Y&feature=youtu.be

It Takes A Village To Raise A Chicken

Today "Fort Chicken" was completed.  Bob and I moved the chicks and their nursery out to the space we have been working on for weeks.  Gate latches and locks were put on, furring strips around the top and posts over the ends of the chicken wire roof.  Thursday they will be one month old.  They weigh 10 times what they did the day we got them from the post office.  Now to finish the design of the actual coop.  My inner Martha has a strangle hold on me.  So it will be beautiful as well as functional.

The old hanging waterer, and a temporary outdoor feeder. 

So many people helped make this dream become a reality.  My husband  has been there every step of the way.  He said:"If keeping chickens again will make you happy, okay, let's get some."  He's so invested in keeping them safe, and has complied with my over kill on construction. Every seam top, sides and bottom has been sewn with steel wire, then horse fence on the outside of the run, and furring strips added on top of the ends of the chicken wire (making a sandwich of chicken wire between 2x4 and furring strip. He made a wide gate I can get a wheelbarrow in and out of.  My friend Ami worked in a windstorm with my son one Sunday while I lay in bed with bronchitis.  My son came twice for gravel moving and putting up most of the chicken wire roof.  My friend Charlie stood on one side and I on the other of the entire pen sewing the floor to the sides, and the hog fence to the chicken wire so no critters can dig or squeeze between them.  Our pharmacists,  a grocery store manager, our ceramics class, friends saving paper, egg cartons, and celebrating at the Chick Party, gifts, cards and flowers given-- they have all been there.

Buddy would prefer to be inside, but has found his watchdog point.

I plan to have a "coop warming" when their nesting coop is complete this fall.  We have about 4 months until they start laying. So there will not be the intensity to be ready that we had with Fort Chicken.  Today when it was done and they were diving out of the door of their nursery, I sat on the ground on my kneeling pad and leaned against the shed drinking from my water bottle in the shade.  One by one they came up to me. Some hopping over me, gently pecking my pants.  4 large buff Cochins crawled on my lap and went to sleep.  I put my head back and closed my eyes. The cool of the shade and the warmth of these 4 feathery birds on my legs felt wonderful.  This is what it's all about.

Their first walk on the ground.

Rose bushes will be planted along the front wall.  They will provide shade, as well as thorny barriers for the coyotes.  Bob is going to build a "sandbox/bathtub" in that corner for them to dig and roll in.  We used wood from my days on "Wildfire" for the transom over the gate.  We'll use more of the barn wood for the nesting coop.  I am searching for an Etsy vendor to make a "Fort Chicken" sign to put on the transom above the gate. Chicken silhouettes have been ordered to put on the posts tops in back.  I love my ravens on either side of my gate to the garden.  So I am sure roosters and hens will do very well too.
Is there such a thing as contented exhaustion?

Rose bushes will be tightly planted along the front.

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

TEAACH

"The Woman Who Died On The Psychiatrist's Couch"
She ran out of time, not subject matter.  copyright 1994 s.weese

The woman who diagnosed my son is also a behaviorist.  I had learned about antecedent behaviors in school. But now my book had pictures.  Dr. Victoria Lavigne broke down my behaviors, and my son's so I could understand what was going on in our lives. She gave me a whole tool box with ways of addressing his constant tantrums, fits, and bazaar episodes.  She held my hand while I cried, screamed, and thought I would be swallowed up by IEP's and "professionals."  She was my mother confessor. Because my biological family thought I should residentially place him, and get on with my life.   They hoped I had kept my receipt, so I could return him.  ABC (antecedent behavior charting) : http://www.specialconnections.ku.edu/cgi-bin/cgiwrap/specconn/main.php?cat=behavior&section=main&subsection=fba/abc
I had not kept the receipt, he was mine.  Honestly, no one else wanted him!

Of all the dollars spent on my son...these were worth EVERY penny.  Sometimes I felt there wasn't enough compensation for what I was learning.  The image above I drew during this whole process. At one point I realized that I had to get off the couch and take what I had learned and use it.  If what you know about behavior modification ends at 123 Magic...find a professional who understands and can teach you about behavior.  If a child is young, perfect.  You can learn together.  The younger, the better. Bad habits don't have to be broken. In a couple of months you could have a toolbox able to handle most of your child's childhood.

Allison Strine on Etsy

Now there are whole programs designed.  Back then, UNC was the pioneer. One who trained me is at UNC TEAACH: http://teacch.com/programs-and-services/regional-centers   Between Dr. Lavigne and TEAACH I learned enough to change the behaviors and I believe outcome of my son.  Did he like it, not really.  Basically I had to catch him being good and reward it.  This was a kid who in kindergarten had between 2 and 12 meltdowns a day.  I feared that he would get too big and too aggressive for me to handle.  Some of the other mothers who had kids on the autism spectrum were missing huge clumps of hair, had totally destroyed houses, and were battling daily physical attacks from their own children.  Believe me, there were some days I thought one of us would be institutionalized by dinner time.  I was willing to learn a better way for us, and so I listened to them.

"Social Stories" by Carol Gray came out about 2 years after my son's diagnosis.  I have two binders of "social stories" I wrote and illustrated for him.  They were mostly about life at school. Some written before events, some after.   Assemblies, field trips, changes in routines at school flipped him out.  So I tried to prepare him ahead of time for what activities school brought.  "New is bad, surprise is even worse" is one of his rules.  :-)

Behavior charts and a calendar was kept.  I could see patterns of behavior on the calendar.  He was given medication by a neurologist at first, and then we switched to a child psychiatrist who dealt with only this "A" population.  Cataloging / charting outbursts was imperative.  I could see if a new med was really working, or behavior modification was helping.  He used to act out about 5 minutes before the bell would ring.  It didn't take long for us to figure out he hated the sound of the bell when the teacher and aide kept a daily diary of behaviors.  Changing classes when the halls were not filled also kept his sensory input down, and he was able to transition effectively.  Transitions were very difficult for my son.   A quiet hallway made all the difference when he went from one activity to the other.

Medication is another issue I struggled with.  He was not able to function in a public classroom without it. Plain and simple.  There were no other options.   I always felt when he was older, that I would take him off all meds.  Depakote was such a two edged sword.  It kept him even, but he gained weight, and his sweet tooth was amped up.

When taking this medication liver function has to be monitored by blood tests.  When his routine blood work came back with liver issues, we took him off of it.  Secretly I was so happy.  He told me it was like having a heavy blanket lifted off him.  He continued on the antidepressant, and beta blocker.  This helped with the obsessive jags he'd get on, and couldn't let go of.  This was in high school.  We had moved to NM and had a wonderful behaviorist.  Dr. Simms wrote a letter to the school and said he could not handle public high school without meds.  So they sent  a one on one teacher to our home until he graduated.  One on one, he graduated a year early dually enrolled in community college.

When he turned 18, he took himself off all meds.   Alcohol was present in his social life, and he wanted to drink with the "normal" kids, and knew he couldn't drink and take meds.  His use of alcohol is something I am not comfortable with.  However, he does not live with me. He's 23 and I don't get a vote.
Like his food, he is very picky about his drink.  I don't know if this is good or bad.  I have done so much parental lecturing about alcoholism in our family.  One never knows what sticks.  I do see responsible drinking, and not driving.  Between you and me, I don't think I'll ever be comfortable with him or my daughter drinking.  Why?  Because I have a family tree with drunks hanging all over it.  But that's another blog topic.

Below is another piece by an Etsy seller: Allison Strine.   I think she is on the spectrum, although I am not sure.  Many people have sent me her cards in the last few years.  I have the one below hanging on my workbench.  My daughter sent it to me, and I love it!

Allison Strine:http://www.etsy.com/people/allisonstrine

I bought this card AND got 2 as gifts! 

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