Today I am cleaning out some files and came across "The Boxes". The boxes I found are the massive records and research that follows my son's education over 11 years and 2 months. Soon I will be attending an IFSP for one of my students so I was curious to look back at our first meetings.
The first surprise to us was the language of education. The use of anachronism to such an extreme degree we often thought it was a tool used to confuse parents. The crazy soup of IEP, IFSP, SLP, IDEA,LEA, ELAP, PICLD, PSE, SEE, ASL, TOD, AT, AVT, WASL,WAAS,BDIED, LAS, T/C, Bi/Bi............ the list continues and I have no need for that list much now. I spent countless hours researching and trying to network. It could have been so much easier if the world was ready for us.
What strikes me is that these documents outline the struggles we had trying to get ASL included as a primary mode of communication in his services. Each meeting had hours verbal dances and carefully worded requests. From the first meeting it was clear the world was not ready for a family that wanted a simple bi/bi education for their child. On one hand we were praised for our desire to communicate using ASL. We were a rare breath of fresh air not hanging in a cloud of denial. When we took control my son's education were labeled as crazy extremist. My son aided might be able to hear very loud environmental noise, maybe. So our choices seemed quit sane to us.
Something else that stays with me to this day is how isolating the whole process is. The IEP is totally focused on one child and yet the successful outcome of this child is dependant on critical mass, peers. We were not encouraged to work as a group of families but just the opposite. In our case before the age of three we were directed away from other families. There was a fear they may catch the bi/bi fever. The feeling I got was the educators, the experts, wanted dependence from us. By joining the Deaf world we took that away from them. We didn't need their sage advice on parenting and oral acrobatic exercises. We had a child with no delays so the only service we needed was environment. The environment we needed we couldn't provide at first. We needed support while we rushed to catch up.
So as I look through these documents I am reminded of the hard work we did just to get a shadow of the right environment. I am reminded that I always wanted to change the system for all Deaf kids and create a community to help foster the success of our kids. What I got was isolation. Even though it is documented what we did worked, it was never convincing enough to others. Some liked to just excuse us saying my son is just really smart.
So here are a few things that caught my eye as I glanced over the pages of the first year in the system,
First IFSP- hopeful and eager to get moving, age 10 months
Outcomes (related to family's concerns)
1. Parents will become proficient signers
2. Parents will meet Deaf people and attend Deaf community events and receive information from D/HH Infant Program.
3. Father we be able to attend sign class once a week. (I was working 16 hour days and taught myself to sign from a book at work)
Deaf ASL teacher comes to home once a week to teach friends and family
Weekly home visits from a D/HH teacher
Respite rembursement for sign classes at local college
So by the age of 1.6 years I had asked to amend that. We went from 3 outcomes to 11. All of the outcomes were in an effort to get a Deaf D/hh teacher, a Deaf mentor and an ASL environment for the group classes we attended. Once a week there was a group class for parents and children but the teacher peppered in sign like a garnish, I got so fed up eventually I demanded an interpreter for that class until they could provide a separate class that was ASL.
Weekly home visits- the teacher was hearing and even if we tried to voice off we always fell into speaking. She was a really cool person but didn't match our needs.We needed someone Deaf. We needed ASL exposure not hand holding.
We also were shocked at all of the options and saddened that each philosophy had a tribe of follows who refused to accept the other tribes who felt equally that their way was the only way. It felt like walking down a dark street being solicited by drug dealers at every corner.
In that first year we got kicked out of the John Tray Clinic for signing, later we tried the correspondence course with no positive results. The expensive hearing aides were a bust. We had a Deaf kid who took to ASL like it was a magic elixir.
To be continued.....