Summer, 2006

Robert’s Story

        This is the story of a sweet little boy who grew up to be a "Gentle Giant”. That was his nickname in High School. Robert was born on 9/7/85. He developed normally, with some delays, until about the age of 2. Those delays included speech, not wanting to play with other children, and not wanting or needing the affection of his very loving family.  At 2 1/2 years old he was diagnosed with "Autistic-like tendencies" by the University of Washington. Child Development and Mental Retardation Center. (CDMRC) Two weeks later he was in a preschool classroom in Seattle.

This was all a bit overwhelming for me. At 22 years old myself, I would have rather been in Electric Shock Therapy as opposed to facing such obstacles. To say I was a single mother would have been accurate, but we lived with my parents and younger brother. Without the support of my family, I don't know what would have become of my smiling, happy, energetic 2 year old.

Robert loved school and especially the bus ride. He was thrilled to go to school everyday. This excitement continued until the day he was deemed too dangerous to be in a school setting. After being successful for more than 15 years in the school system, he was suddenly "a danger to himself and staff”.

I made mistakes. The school made mistakes. My biggest mistake was to allow the school to use edible reinforcements. It is very reinforcing in the beginning of the program. But after a while, this becomes more of an appeasement than a learning tool. Robert gained 150 pounds over a 2 year period. His doctors said part of his weight gain was due to his medications; part of it due to his diet. So we concentrated on his diet. That poor boy ate so many salads and fresh vegetables over the next several months, but his weight did not decrease.

By sheer accident we found out that the school was giving him unusually large amounts of edible reinforcers. This included doughnuts, bear claws, and cookies. This was not the agreed upon trailmix, cheerios, and up to 5 M&M's that we had agreed upon. When we said we wanted this stopped and everything charted that he was eating at school, the trouble started.

At that time, he was 6'7" and weighed 432lbs.  The staff had resistance from him when the edible reinforcers changed. He began scratching and becoming uncooperative because he wanted a candy bar. Who could blame him?  He is nonverbal and only wanted what was rightfully his.

The last straw came when he went back to school after being on antibiotics.  This was the last day of his medication. His normal paraeducater was attending a funeral and would not be in class that day.  The decision was made to send Robert to school because his regular special ed. teacher would be there. Well, she fell down the stairs at 2:00 am, and broke her leg. Somehow, it got overlooked to call and tell us not to send Robert to school that day.  With Autism you need routine. His paraeducater was gone—not a big deal; his special ed teacher  also gone—very big deal. This was a bad situation waiting to happen.

Robert went to school that day with his family believing he would have one of his regular staff to work with him. He went to class and began signing "EAT." The sub-paraeducator and substitute teacher both told him it is not time for lunch and to sit down. He continued to sign his heart out because the antibiotics were upsetting his stomach and causing him pain. Both teachers continually told him to sit down; lunch is later. The teachers were unaware that for him to sign at all is an enormous attempt at communication.  They thought it was common practice that he  signed "EAT" all day long. They ignored his pleas of signing and holding his stomach. Robert decided to go to the cafeteria to get some food for himself. At that point he became aggressive when he was not allowed to leave the classroom. The Emergency Response Team was called to help.  Another new person who did not know Robert decided to "take him down."  My son suddenly had 5 grown men holding him down.  What would you do?  He did not like it and decided to get up; more pain for my child.  As a result, he was deemed too dangerous to be in a school setting. He was "temporarily" schooled at home. He was supposed to get monthly reevaluations to get him back into school.  These never happened.

He spent from Feb. 2003 to April 2005  being schooled at home. Was this fair?

I was living in Germany at the time and could not help him. He moved in with his grandparents in Feb. 2001.  I came every summer to help and in September 2004, I moved back to Washington.

Robert had changed school districts in 2003. The new district had all of the negative information and none of the positive. They also decided home instruction was necessary. At his IEP meeting in Oct. 2004, I made a formal request that instead of his 2 hours of home instruction Monday-Friday, they increase it to 3 hours daily and outside of the home. The teacher at the meeting packed his things together and said he would get back to me. I never heard from him. I made the same request at several other IEP meetings and again nothing happened. I began disputing and disproving the negative information they had on Robert. I also provided positive documentation to show his learning potential.  Still, he continued to receive 2 hours of school services daily, except it was  more community based.

Then PAVE got involved. They taught me what I needed to do to help my son. Things began to change as soon as PAVE began to assist me. His new School District started to look at him in a new light.

On  April 22, 2005 his 2 hours of school services were increased to 4 hours per day and outside of the home. This was an absolute success! This continued through his summer school program with one success after another.  In Sept. 2005, he began receiving 6 hours per day of services.

Robert began working at Timberland Opportunities in October of 2005.  He is also going into the classroom 3 afternoons per week for class instruction and to be with his peers.

Robert went from forced isolation and segregation to inclusion and participation in his community. My Son is now earning a paycheck and has never been happier. His communication skills have increased including speaking.

He won 2 Awards this year. Timberland Opportunities Association awarded him with "Trying the World of Work" Award and from Elma High School he received an Academic Award for "Community Access”.

His old school district considered him too much work and too dangerous. They got him out of their school at the first opportunity.

Elma High School gave him a chance. The new Director of Special Education, John Lucky, was skeptical in the beginning, but he saw Robert's successes, and allowed him more.  John Lucky gave him the proper supports and most importantly, the opportunity to succeed.

Robert also has a new Special Ed teacher who herself has a son with autism.  She looked at him in a different light.  Carol Beck knew his biggest problem was a lack of                communication in the traditional way.  She found different avenues for him to succeed. This is a woman who is truly committed to her students.

The person who deserves the most recognition is his paraeducater.  Cathy Baker  provided Robert's home instruction for 2 1/2 years. She got to know and read him very well. She knew he could do more. She still searches for answers and ways to help him communicate better.

The Elma School District, with the help of Dee Dee Garman,  PAVE community liaison, stopped looking at Robert Davis with “behavior” problems, and started looking at Robert Davis with “communication” barriers. Robert's behaviors are caused from his lack of communication skills.

I would like to give parents                   four pieces of advice:

You only have that calendar school year to address your problem. When the school year is over, the problem no longer exists. You can’t go back the next year and expect changes to be made for problems from the prior year.

Do not allow schools to use edible reinforcers with your children.

Advocate for your children; they cannot advocate for themselves.

Advocating simply means speaking up. You do not need to get angry or yell.  Just voice your concerns, and don't take no for an answer.  When you put the right people in the right places, things start to happen. John Lucky, Carol Beck, and Cathy Baker really are the 3 people who turned this situation around. They are allowing my Son a future.

         Thank you all!