The Early Intervention services we get for Ellis are really great. It's wonderful that the county will provide all that he needs to give him a good start. Every other week a woman comes from a local School for the Deaf, and she has been wonderful, bringing helpful resources, giving us good ideas, and just talking with us, as we begin to navigate this new world of the deaf.
But then there is the office who coordinates it all, at Early Intervention headquarters. They came out for the initial visit, and we devised a service plan based on what we wanted to happen for Ellis, which focuses primarily on his communication development. They came yesterday for the six month review of this plan.
Can I just vent? the Early Intervention HQ is so annoying! First, the review was supposed to happen in April. So about ten days into the month, they call me asking for this to be set up, and I'm like Hello! I'm in Louisiana for the rest of the month!. Weeks went by between phone calls, because our Service Coordinator didn't coordinate anything! I was calling our teacher trying to figure out good times, trying to find good times for, and trying to find good times for the coordinator. The teacher (I'll just call her S), was like hello! isn't that the coordinator's job? why is she leaving you to do it?. So anyway, the beginning of June, yesterday, we finally had this six month (now eight) review.
I don't really like our coordinator to begin with. I don't really know how to describe her, but it's like she has no imagination, a flat personality; the type of person who you have to be careful not to use large vocabulary words around. The most annoying part is that coordinators are essentially paper pushers who possess the keys of the system, so they treat us, the family, as an element to be fit into the system. If you try to talk to them outside their little notebook, you may as well be speaking another language, because they cannot think outside the box. Our family is outside the box. We're just outside the box kind of people.
I love our teacher S, because she gets us.
Before the meeting, I took some time to write down our desires/objectives whatever their language calls them, and how I thought they could best meet our needs given Ellis's particular situation. I knew I would have difficulty getting a word in during their visit, so I wanted our desires to be as clearly articulated as possible. S was thrilled with what I had written, the Service Coordinators put it in their files and forgot about them. Couldn't they have filled their forms out based on what I had written? Is it just too outside the box?
Deafness gets lumped into Special Needs for service provision. Well, it is a kind of special need, but it is different from needs, such as autism or down's syndrome. It is low incidence, as S put it. The main need that needs to be met with a deaf child is communication.
Communication is a social, with another language comes another culture. Meeting Ellis's needs not only means that we provide him means of communication in ASL and English, but that we give him access to the cultures both languages live in, deaf culture and hearing culture. Whether or not you thing loss of hearing is enough basis for another culture is irrelevant, because it exists, and has been the source of much encouragement and happiness for thousands of deaf people in this country. Why wouldn't I want my son to have that? But even more I don't want his deafness to be a source of alienation from us, his hearing parents.
We want to be part of his early experiences with deaf culture, so that he knows we'll always be part of his life.* So I asked the intervention people to include a center-based activity at the deaf school as part of his Service Plan. After all, communication is social, and Ellis's services are all about communication. Whenever we do go to the school for the random occasion, Ellis loves being there. He loves watching people signing (something we can't provide very much of, though we're learning). He just lights up whenever we're at the school. It makes sense to include that time in our service plan.
Well, we were shut down so fast I didn't even see it coming. The Service Coordinators stated firmly, only home-based services allowed, period, because the home is the natural environment. period. This is where it is difficult to include Deafness with other special needs, because it is unique. There's a real sense, where being with other deaf people IS a natural environment. There's different communication happening. S tried to open channels to at least talk about it with the Service Coordinators, but they absolutely refused to talk about. It's outside the box. It was frustrating and demeaning. We're smart people, you know. Anyway, when Service Coordinators left, we and S all breathed a sigh of relief. She said that there was more to it than they were letting on and will help us to figure out what to do to appeal it. I'm not really keen on being a trailblazer. But Ellis really loves being there. Someone is signing to him the minute we walk in the door. He gets so excited. I mean, it's way better than his DVD.
I'm interested in studying more about communication and culture in general and how much they impact eachother.
I need to get moving, though. We're off to Lancaster for my little sister's high school graduation. Woohoo!
*One thing we discovered when we went to a cochlear implant info meeting at the school is that implants don't have to change the culture. People can hear better with them, but also continue to enjoy the rich communication/culture ASL brings them. We like that. So if Ellis gets an implant, this cultural aspect doesn't get mooted.
