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Tuesday 21 Nov 2017

I Thought I Knew Everything About Autism – by Jennifer

I thought I knew all there was to know about autism, until I had my son.

I run a program for high school students with autism based on structured teaching and the TEACCH model. I also teach and train educators on best practices to use with students with autism. School districts in the area come to my classroom to seek out my advice and wisdom on how they too, can better serve their students with autism. People call me an “Autism Expert.” I was happy with my role and for years I was able to believe them. That was, until I had my son.

I started working with people with disabilities in 1980. I was 14 and my mother went to work at a camp for adults with disabilities. She asked me to come with her , so I did. I had no official duties but was free to walk around the camp and talk to campers. Mostly I observed and took in what I could about the experience. The longer I stayed, the more I felt like this is where I belonged. When I came home, I started coaching Special Olympics, volunteered in the county’s specialized recreation program, and started babysitting a boy in my neighborhood.

The little boy I babysat was 3 years old, nonverbal , and played with flashlights and broken electrical parts. As he grew older, the other kids in the neighborhood avoided him. I would bring him across the street to my house where we would bake brownies, watch movies, or observe the antics of my little brother and sister. I would hear his parents talking with mine about how grateful they were for the care and attention I showed to their son and how perplexed they were at trying to figure out how to help him. It took a few years before he was diagnosed with autism. I continued babysitting him until I went off to college. Once he was diagnosed, he received services and special education. He is now an employed 28 year old man who speaks several languages and is my friend on Facebook.

While completing my major in Special Education, I told my instructors that I wanted to teach students with autism. They were concerned that I was limiting myself and they made sure that I did internships in a variety of classrooms. When I graduated, I was hired to teach high school students with moderate to severe developmental disabilities. I taught for 5 years when the district started serving students with autism who were nonverbal and were exhibiting aggressive behaviors. The teachers serving these students were scared and unprepared. I was young and energetic so the district moved the students to my room. I asked for training and the district complied. I learned to use visuals, learned the importance of giving these students a way to communicate and learned to see the behaviors as their form of communication. Within 2 years I asked the district to change my program. I asked them to give me all of the students who were age 14 to 18, were nonverbal, had a diagnosis of autism, and had extensive behavior plans. With the help of Dr. John Whitehead, our district autism specialist, and all the information I received, I set up a program using structured teaching, basket systems, visual schedules and routines, and communication systems to assist these students in learning and being able to communicate.

Since that time,I have served some of the most challenging students in our district and have taught that they can get their needs met without hurting themselves or others. I have toilet trained 18 year olds after being told by parents that they had tried everything and had given up. I have worked with the speech language pathologist to give students ways to communicate that are working for them. My classroom runs like clockwork, with everyone knowing what they are supposed to be doing and rarely do we have meltdowns requiring the follow-through of our crisis plan. It is for these reasons that other professionals in the field come to me seeking answers. Professionally, I am well-respected for what I do. So why is it that I go home at the end of the day and I feel like a sham?

You would think with my expertise that if, by chance, I had a child of my own with autism, that things would run so well for us at home. You think you would come to my home and my son would be engaging with people. He would be eating at the table with us. He would tell us that he needed to use the bathroom and would just get up and do what he needed to do. That, however, is not the case. Someone forgot to tell my son that I am an “expert.” My son is 8, severely autistic, not potty-trained, can be aggressive, and is a challenge to motivate. Everyday, I try to use the best practices that work so well in my classroom with my son in my home. I have object schedules and an object communication system for him. I am lucky in that I know the experts in the area and know exactly who he should see for speech, for ABA, for feeding therapy. I know the best naturopaths, neurologists, psychiatrists and behavioral specialists. They have all seen him.

Currently we started seeing a new behavioral specialist.. I know his techniques. I already know what he is going to tell me before he even says it. He tells me the same things I hear myself telling my students’ parents. Last night, my son threw a temper tantrum that lasted more than 2 hours. The “expert stuff” I know did not work. The visuals, the therapies, the communication system—none of it worked. I took a step back. What does a mom do when her kid is this distressed? At this moment being a mom was all I had left to be. I wrapped him in a blanket and I held him. My son does not know me as the expert. He knows me as mom. Before I had my son, I could not understand why parents would not just do things like I did at school. I now know because I now walk in their shoes.

2 Comments

  1. Cheryl says:

    I don’t know how old this post is, but I can completely relate to it. I am the Mom of a 10 year old severely autistic boy. He suffers from alot of what you described in your post. He is 75 percent potty trained. But we have a alot of accidents. He suffers from PICA and has severe sensory issues. Would love to correspond with you because we are sharing a very similar path. Raising a special needs child is the hardest thing I will ever do in my life. I love my son, and I know he has given me more then I could give him. I live for the quiet moments where he looks at me and shows me he loves me. I am grateful for any and every small milestone. Good Luck with your journey and please know you are not alone.

  2. Melanie says:

    Hello, my name is Melanie and I have one neurotypical child and two children with autism. I am a member of the Autism Speaks blogs and found the information on this site beneficial as well.

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