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)
Services
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.....
I'd like to find some middle ground to support spoken language with sign. I'm finding through my research that neither "team" wants us.
ReplyDeleteThe oral people have no advice for what to do in situations where she can't wear her hearing aids (like swimming).
We're not going to stop talking and use ASL as our primary language.
I haven't figured out what to do. I don't want to spend another summer shouting.
JoeyRes you just made something bubble up. One thing I am seeing is more CI parents looking for a way to be bilingual. It breaks my heart that this is not embraced. My son does not have any technology but he is 12 and very deaf. Just because we are so deaf as a family doesn't mean we don't embrace every deaf child in all the ways they navigate they world.
ReplyDeleteI may not be the popular kid at the party but as I see it more kids have this issue than not. I am reminded of a night I was volunteering for my son's dinner show company. I was setting tables and the directer was getting the company warmed up. They stood in a big circle, my son who is much younger and Deaf stood with them.
"I want you to focus, think about the floor you will cover, think about a scene where you will be standing where you are now, be present."
The directer brought the company to a place of unity as she talked. All day long the kids had been focused on school and social issues but at that moment they were present with their play. My son who is from another world was one with the group. I don't remember everything she said but I do remember this,
"When you are ready take a step into the circle"
The company became one as they walked into the circle each at their own time.
Wow glad I found your blog. We're in a slightly different spot, but many the same challenges. My 20-month son can hear a little without his aids, but not enough to acquire language. I myself am severely HH, wear aids, and have become pretty fluent in ASL over the last 4 years. It seems the entire medical profession is focused 100% on oralism, so I am teaching my kids ASL. @JoeyRes hilarious point about the pool. My son is in swimming lessons now, and the primary reason I can't be in the pool with him is then neither one of us would be able to hear the directions from the teacher, hahaha. I take it in stride and with a sense of humor, and it's a really good point to make to doctors that don't believe in bilingualism: what do you do at night, in the bath, at the pool, when batteries die, when aids are getting serviced, etc etc etc. YOU SIGN TO EACH OTHER! =)
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