This is just one of my thoughts on a much larger topic. It is just my perspective at the time my son was still a baby. It is simply something that I was feeling. It really complicated and I can't go in to great length in one blog.
Our case worker really tried hard to help us. The staff had never met a family like ours and didn't have the tools to really fit us into the system. Our requests seemed so logical to us so it was a bit of a shock when it didn't just happen.
We had asked to meet other families. I had imagined how happy we would be when connected with all the other parents we would have an instant support system. I had imagined us all working together to raise our beautiful children, learning from each other and enjoying some laughs along the way. Turns out this is not entirely in the cards for us.
My thought is maybe one problem is parents of deaf children are put under tremendous pressure to be perfect. You must make the perfect choices and follow through without fail. If you don't do this you have failed. In this model of perfection you are told you must start right away and if the child is not perfect in 10 years it is your fault. While you trudge along confused and scared you realize there is not one kind of perfect. You choose the perfect that seems closet to your family even though at time it feels like you are cramming an elephant in a pin hole.
People from the other perfect choices feel the same pressure and the belief in the perfect outcome makes them defensive. The don't venture out to consider the points of the other camps because if they do there might be a crack in their belief.
Professionals usually hold on to one belief and Shepard parents would follow them. This creates a divide amongst parents and worse the children they are all trying to help. We had one professional actively tell parents we were crazy and not to listen to us. Other professionals that agreed with us applauded our efforts and gave us support.
One example of this divide is a family that lived a few blocks away. We saw them at the park and asked our case worker if she could connect us. The answer was no the mother was afraid if her son saw ASL he might stop talking.
The community also plays a part in this division. There is a long history of oppression of deaf people. To our new parent eyes it was so hostile at times.
So when we asked to meet other families we soon learned it would be a dance of philosophy. We did receive a small gift in light of the numbers of families who were in the system. One day we got a call that there was a family that had just moved to our area. They had a deaf daughter one year older than out son and the were supporters of bi-bi! The first time we met felt like a first date. I was so nervous given the other encounters we had. Within 30 minutes we were laughing, grumbling and feeling a weight lift as we shared our stories.
I am left to wonder why it was so hard to find a tribe.....
Hi again!
ReplyDeleteThis story must be shared with the EDHI groups, and it breaks my heart to read that there are families out there needing support, yet feeling so alone and isolated because of language choices. There is no perfect way to raise a child, the only sure-fire way is to have your child to be a part of the village along with other children who are deaf. The peer interaction are very powerful for deaf and hard of hearing children, and it does promote language development, along with parents who are able to cultivate language growth. We do need family, community and school working together as partners to raise a child!
Language choices and communication methods are used to draw a line dividing us then what is the community? I know that each child have their own needs, and sometimes they are either a visual learner or auditory learner, but why divide children apart because of a fear of losing speech?
Empirical studies show that deaf infants learning ASL and their speech development progress faster because of their language base, and it helps with speech if this child has a residual hearing.
That needs to be studied!
Boy, I have so much to vent here, but it is your blog and I love it! Please continue to share more stories!
No matter what one's choice of communication is, there is a group to support it and it does take work to find it and other members. Maybe there could be an online directory to help such as you find the groups?
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ReplyDeleteAmy, I posted last night and realized I left information about someone we both know and trashed the comment because I promised myself I wouldn't ever name people on this blog....that said...I have heard of you through someone we both know! I just made the connection. The deaf world is small. Thank you for your comments. You put meaning to my words.
ReplyDeleteDianrez, That would of helped us at that time. It was a lot of work and we were fine but we had finacial resources and the skills to do the work. What was strange was we wanted to connect to all the local families. That would have been easier if there wasn't such a divide of philosopy.
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andrew I am so happy it is a help. I find the biggest problem really for us was that there is such a lack of communication. I am grateful you read my blog with an open mind.
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