Tuesday, September 29, 2009

Blocked Again

Everything I write in this blog is for my son. Comments are so important because he needs to see why this part of his life was so big. So I welcome your thoughts. As he grows he needs to know what the world at large is thinking so he can create his own opinions. At times I am a bit harsh. This is because at that early stage we did not feel our needs were met. Our family was not the typical model.

I will not parade all the research or case histories that lead to our choices but rather provide snapshots of the first years of his life as we saw it. We made a point at a young age to remove the medical label of his deafness. We chose to provide him with an environment that did not shelter him or block him from the world at large but rather give him the tools to enjoy life with confidence.

About 10 years ago.....

Every day it felt like we were learning something new. We attended conferences and workshops for educators and parents. My husband and I would split up so we could get as much information as possible and compare notes at night. At this point we were not sad or nervous but really excited. We saw our son blossom and the experience of parenting was a blast. The tools we were taking away helped to navigate areas that were new.

Our home center classes were a bit of a struggle. During the last part of every class the children would go out to play. The lead teacher would then gather the parents and address different "issues" the parents might be dealing with. The "issues" usually centered around "expected" delays with development. The only problem was my son was showing no sign of delay other than speech. If the teacher said the children would be more aggressive because they didn't have the same social cues or incidental information as a hearing kid I would offer advice that worked for us. My opinions were not welcome.

One example I expressed that if a child has a native language and a native language peer group there is no reason the expect delays. In our case the peer group was CODA and deaf children of deaf parents. Incidental language is available if the adult who provides care uses that language and make sure the child has the opportunity to have access to it. The child also benefits from watching adults have conversations that don't involve them. My son had no problems socializing, period. So how could I be wrong? So my idea was rather than pointing to pictures of sad faces why not use the native language to engage and redirect behavior?

What if a child who speaks Russian plays with a group of English speaking children? Do we expect the Russian speaking child to exhibit inappropriate behaviour because he doesn't know English? It all seemed so simple but the teacher would always respond to my comments with guarded irritation and never discussion.

Usually it went something like this, " Well that is great that is working for you but it is not entirely true what you are saying". Sometimes they would say my son was an exception. So the message I was getting was the teachers didn't believe the children could function without severe intervention. Upon reflection I can see this may have been threat to their entire reason for working in the field. If everyone did what we did they would have to change the entire system. Not to mention there was not one staff member who voiced off during the the entire time of the class.

Parents would be shocked to see how well he was doing, which was typical for his age. They would often ask, "What are you doing?" I would tell the during the free play time and give them my phone number. After that they would avoid me. I found out over time that the teacher was steering them away from me. Over the 2 years we attended that class I would find out through different sources that she would tell parents I was in denial, off balance, in need of education and resisting intervention and in one case she told staff from a different program to avoid me because I was crazy. The problem here is he was still little. The parents could only fantasize about his adult outcome.

There was a mom who did call me. I suggested she ask for a deaf mentor with a similar hearing lose to give her an idea of what it will be like. I told her that someone who depends on ASL is very valuable even if her son became an oral super star it helps to know what being deaf is from the perspective of someone who lives as a deaf adult. He was already surrounded by hearing people and one staff who was oral but proficient in sign so he was getting what the hearing world was like.

They assigned her the aide in class who was raised oral and signed. This seemed so safe to me. The mom could just sit and chat with her and be reassured that her son would follow her path. Well this aide had a different hearing lose. When the mom called me to tell me I was straight with her. She had wanted to have the same service as me. I told her it would be easier to get that if she redefined the criteria for her request. I told her to ask for a Deaf adult who relies on sign language and has some college education.

The next home center class I was asked to stay after. The teacher and aide sat me down and read me the riot act.
"You can not talk to parents, it is too damaging. Sallylouwho (I replaced her name) is deaf and your comments are very hurtful. I have a -insert education back round- and years of experience. "
I pointed out the Sallyouwho had a different hearing lose and she didn't pick up ASL until later than life. I had no intention to hurt her feelings or deny her hearing lose but the needs of the family were the important issue. I didn't feel the needs had been met in this case.
The aide broke into tears right there and told me she was deaf and her mother worked really hard to help her speak.

I can't tell you how many times I have heard that statement. I imagine mom sweating over hours at the dinner with drills and frustration. I am always wondering aside from the guilt the kids carry do they ever feel the same gratitude for dad?

She was so emotional it became a case of me the tyrant pain in the ass mother who was attacking poor Innocent deaf people.

The teacher then continued to warn me and blah blah blah. She did not once open the topic to discussion.

I was so shaken and had a meeting with a teacher from the charter school upstairs after about some fundraising I was doing for the school. You see the charter school connected to the home center was going Bi-Bi so they welcomed us. As soon as I saw her I broke into tears. She sat with me and let me vent. She would latter become a very supportive and wonderful friend.

About three years ago.....

We always taught our son his rights. One right is public accommodation which in his case often means an interpreter. His CODA friend wanted him to join Boys and Girls Club Summer program. His friend's mother requested an interpreter for the parent orientation. They didn't provide one and didn't bother to tell us. So in a nut shell we found out my son could join but they wouldn't provide any accommodation. I called the DOJ and they told me it would take about 3 months to investigate. That was exactly how long the program lasted. The thing about my kid is when I doubt him he always proves me wrong.

I sat him down and explained the situation. I was going to file the complaint and maybe they would settle it fast. He said no, he wanted to join now. I said how? He told me that was their problem. He had a blast all summer. Nothing phases that kid except cleaning his room.


  1. "if a child has a native language and a native language peer group there is no reason to expect delays." Beautifully and elegantly expressed.

    There will be those who say "well MY native language is my child's native language too."...they just don't get it. A language not fully heard is not that native or accessible.

    Give each kid all possible tools for communication. From the beginning. It just stands to reason.

  2. WOW!

    Love reading your blog!