Saturday, October 23, 2010

Don't take my word for it

I am a bit of a sceptic when it comes to research and test results when I  think about deaf children. The thing that gets me is deaf children have complicated factors involved. I am more inclined to look at brain research in regards to typical development of all children.

For someone to research outcomes of deaf children they need to find kids to track. Well deaf is low incidence. Deaf can be a variety of things and families impact outcomes. Schools impact outcomes. There are also deaf kids who have other things going on developmentally which effect their progress.

I often question the motives of the researcher and wonder who funded the project. I am curious about how scientific the study is. We all know there is a way to frame anything to suit our opinions.

To gather accurate data I would think a researcher would need families to follow a controlled protocol while raising their child. That of course is just a thought I have. Families are so different. Some are big and some small. Birth order and finances can affect a family. The only thing I manage to control is my weight because I don't have much time to eat.

When it came time for our family to make some choices we read about brain development. Natural language acquisition seems to be a key factor. We decided on what tools we would need to facilitate that. We considered the unique characteristics of our son's hearing lose. We stepped outside of the deaf issue and thought about the big picture of what makes a human happy on this planet.

If my son had a mild hearing lose partnered with a learning disability our choice would have most likely been different. The world might still see him as deaf but he would be a totally different child.

If he had the same lose but showed an aptitude for speech we would have recognized this and acted.

When all is said and done my son has always met or exceeded benchmarks. He passes his state tests and reads way above grade level. I don't intend to research him but I can tell you some factors involved in this outcome.

1. Naturally acquired language which includes incidental information

 That is the kind of information some kids miss out on like, "Where did I put my keys?" or    "Oh crap the Johnsons are wanting to go to dinner Friday and I can't stand Fred he never shuts up"

This involves our family, my daughter included, choosing ASL as a home language. That allows for natural relationships not hindered by the stress of speech production for my son.

2. Exposure to real life situations guided by folks who have been there and done that

We had deaf mentors teach us how to navigate everyday life. It my sound funny but I wondered how a deaf person ordered from a restaurant. My son was only ten months old and that was a question I had. I also needed guidance on school environments and social development. That is where the mentor stepped in and gave us some practical insight and demystified topics we were concerned about.

We also guided our son to be independent and figure stuff out on his own. If he wanted to buy an apple I handed him a dollar.

3. Educated advocates

 It helps to have someone who can untangle the jargon of IDEA and 504. Folks like this can also support you at meetings. There has been a history of folks not taking a parent seriously in our world. I contacted Harlan Lane and asked for names. I find if I read a book and agree with the author they are more than happy to help.

4. Critical mass

Find your tribe. There are people out there doing the same thing, find them. There are other kids and adults to connect to. I really does take a village.

5. Raise that damn bar

Too often I see folks accepting the statistics. I was told many things to expect and to be honest it was all crap.

Expect that your child will do well and demand their teacher does the same (in a nice way of course).

6. My child is not better than yours

Don't compare your child to others. Perfect is kinda creepy to me.

We do look at what a typical child should be doing at every age but do not worry about if he is doing what another deaf kid is doing. We expect he can do anything he sets his mind to an if it doesn't work out we move on.

I don't feel pressure if another child can recite the constitution or read seven books in 3.4 minutes. The world is a big place and there is room for all of us.

7. Do the work

 For us that meant not only learning how to sign but using it. I know it is awkward to try and voice off at dinner when you are still learning but if you don't use it you loose it. Often I see parents in my class work really hard for an hour with me then confess the next week they didn't have time to use it at home. Being willing to get frustrated and make mistakes helped us grow.

The more you expose yourself to fluent signers the better you get. I remember being so nervous to go to a birthday party for a deaf one year old. My son was 14 months old.  A friend invited us and we didn't know anyone. Everyone at the party was deaf or CODA.

At first we just sat against a wall watching. We couldn't understand anything people were signing around us. Part of me wanted to run. We didn't fit in.  Then after a few minutes people came over an introduced themselves. They signed slowly, patiently. Soon we were learning about their lives. It turns out deaf adults wanted to help us.

8. Get the right education fit

I ask teachers where they were educated to get an idea of their philosophy. I stay connected and monitor my son's progress. Volunteering is a great way to establish a team feeling rather than an adversarial feeling. 

My final thought is if I would have put to much emphasis on research and test results I might have let my son be cornered by statistics. We are not perfect, he does face challenges but so does my hearing daughter. I did do a lot of research and comparisons. I read the research and dug deep to find out how it was done and the motives behind it. My son is a minority within a minority. I tried to see how the research related to my son and our family. He is so deaf the only sound he experiences is through  vibration. So I remember back when my son was three several Deaf people told me he would be fine. They were not worried about him even though I worried every day. Turns out they were right. I can't predict the future but at least his outcome will be on his terms.


  1. I particularly liked your #1 suggestion. That goes without saying how "language is social." Our language development involves continuous interaction with different kinds and types of people. That's one way children develop language.

    Oftentimes, my children will ask me what was being said, and it could be something very private. I would tell them, "this is private; can we hold this off till we get home and I will tell you what it was?"My children trust that when we get home, I do tell them.

    This also reminds me how my family would play with English words and ASL signs. They have good meta-awareness of both languages. That is something I wanted for my children. My daughter learned French, and my son is currently studying Chinese and preparing to study abroad in China.

    Thank you for this post; it is an important one.