This is the second part of a series of interviews with Mar Goodman, a mother and advocate for her son Ian, who has a brain injury with “other developmental disabilities” of autism, blindness, communication impairment, severe cognitive impairment, seizure disorder, and other issues.
To read Part 1, click on,”A Parent Advocates for their Child, but the District is in a Different Role.“
by Mar Goodman -
My son’s special education teachers and I worked closely so that they would know my vision for him, and they worked hard to help him attain the skills he needed so that he could meet that goal to the best of his ability.
The Five Most Beneficial IEP Outcomes for Ian Were:
1. An appropriate placement
It was at Oregon School for the Blind (when Ian was 6) that a teacher first truly understood Ian’s needs and the importance of meeting those needs before Ian was bigger and stronger than those who cared for him.
She also gave him the program, based on the TEACCH program in North Carolina, that he would use to understand what his day was going to look like and when things were going to happen. This gave Ian consistency and predictability, which helped him to settle down. We set up the same program at home and also used it when he transferred back to his neighborhood school. This program has been the only thing that has ever really worked for Ian, and it continues to be at the center of his life, across all environments.
2. Appropriate teacher trainings
Our district did not have the classroom setup that Ian needed, and his teachers had to attend a 5-day educator training in order to understand the philosophy and theory of his program. Over the years that training benefitted Ian and many other children in his classroom.
3. ESY programs
Ian had an extended school year program for four or five years, even though it meant setting up the environment he needed and opening up the school just for him. These summer programs were a great benefit to him and kept him practicing what it meant to go to school and what was expected of him there and helped him not regress so much in the fall.
4. Staff access to strategies and the Behavior Support Plan
We had two documents that helped define Ian’s needs and the strategies that had been proven to work for him, his Behavior Support Plan (BSP) and Strategies That Work for Ian. They were originally written by his teacher at the blind school and then were updated on a yearly basis by myself. My opinion was that they were essential for his teacher and classroom aides, so that they might understand who Ian was, including how to approach him and not approach him. At a certain point, I realized that due to privacy issues, only his teacher had access to these documents, yet the aides worked with Ian as much as or more than the teacher. I had been told by the Department that everything I wanted the district to do needed to be part of the IEP, so I began advocating again. Attaching these documents to the IEP would give the staff the right to see and study the documents, which would help them learn about Ian. Without understanding how his disabilities affected him, how could they possibly understand what his needs were and how to work with him? How could they understand his crisis cycle and how to respond when he started to escalate? We listed the Strategies and the Behavior Support Plan on the IEP cover sheet, which effectively attached both documents to the IEP.
5. A Long Term Vision
One of the most frustrating things in those early IEP meetings, was the district’s unwillingness (or perhaps inability) to take a long-term view of Ian and where he would be in 4-5 years, in 10 years, and as an adult. I considered that to be a critical perspective to keep as we educated him, so that we could know what kind of life we were educating him for.
Thankfully, when he went to the blind school, his teacher looked ahead at what would be coming down the road for him, what skills he would need, and what behaviors we needed to get a handle on, both at home and at school.
The most valuable person on Ian’s IEP team – beside me – was the vision teacher, who was provided through the regional program. She was part of the team from when Ian was two until he was 21, while everyone else on the team changed multiple times. The aptly-named vision teacher had a long-term vision for Ian that none of the other specialists had, and she was willing to take on the district to fight for it. She looked at and honestly defined Ian’s needs as she saw them, then she looked at how to meet those needs. Most of the others on the team looked at the district’s limited resources and told me what we couldn’t do, even if it was something that Ian needed. As time went by, this did improve, especially as the team members gained respect for me. Ian’s vision teacher only worked with him a couple of times a month, but throughout the years, she always made time to talk with me after she worked with him. I learned a lot from her, and the bond we formed made me feel like I was not alone. The last few years Ian was in school, she and I and the autism specialist met before the IEP meeting to review what he had accomplished, plan for the coming year, and come up with ideas to present to the whole team. These pre-IEP meetings became essential to Ian’s program.
Another person critical to the IEP team, especially during the last 5 years as we looked at transitioning Ian out of school, was his Developmental Disabilities Case Manager (through county DD Services). She helped the district understand their responsibility to Ian and helped the team understand how to define his last few years of schooling and what it was important to concentrate on. In the earlier years, the DD case manager was by my side at meetings, helping me to interpret what the district was really saying and guiding me as I figured out how to respond, especially when a new idea was presented by the district. She would say, “I think we need to take a break,” and then we would go outside and discuss what was being presented. I learned that I could say I needed more time to think about an idea before I agreed. That really helped.