Tuesday, April 19, 2011


"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.


  1. Suz, your blog posts are always so interesting and I really enjoyed this one. I love the honesty of your posts- you don't sugar coat life and that is how it should be. We are all struggling to do the best and sitting around writing blogs about our perfect families, perfect lives, perfect blah blah blah isn't helpful to anybody. Thanks for sharing such personal and amazing tales as your son's journey with Autism. I am so thrilled he is doing well and getting married. That is what we all hope for our kids right? to be content and find love in some form. Danee

  2. Thanks Danee. I tell it like it is. Some love me for it, some not so much. :-) I am so happy he is so happy with his love.

  3. Suz,
    I've been reading this series of posts. Thank you. Your experience is invaluable to me! If you ever publish the book, please let me know. I want a copy! I'll send you a convo with an update on our situation. :) -Anne