The last few weeks have been pretty interesting. The focus has not exactly shifted, but has begun to encompass more of what being part of the Deaf World will be like. Since Finn’s diagnosis, most of our appointments have been about meeting his medical/developmental needs. Audiologists, Geneticists, Otolaryngolosits, SLPs, etc. all these specialist are essential to the path we’ve chosen for Finn.
After deciding that we wanted to try for Cochlear Implants, we had really important decisions to make regarding his speech and language development. The reason it is so important is because the way you choose for your Deaf child to learn speech & language significantly impacts his future both socially and academically. The reason it is so difficult is that there are many different theories/strategies and some STRONGLY debated opinions on what is best. So strong, in fact, that some hospitals have specialists who refuse to teach certain methods that others think are the best!
There are five main options for communication: ASL, Cued Speech, Oral Auditory-Oral, Auditory-Verbal Unisensory, and Total Communication – click this if you would like to see a chart explain each in detail.
We are given this information and then we rely on whatever research we’ve been able to do in a short time about topics that some people have dedicated their lives to understanding, and your asked to make a decision when you have one hospital/set of doctors who swear by one method and another who swear by a different method altogether. So, say you choose to get Cochlear Implants for your child and your hospital takes the Auditory Verbal Unisensory approach. This method STRONGLY discourages ASL, lip-reading or any other visual cues. The rationale here is that if they can ONLY rely on Auditory stimulation, they will essentially be forced to develop hearing to communicate. But, what if down the road, your child chooses not to use the CI and wants to be able to communicate with ASL and be accepted by peers in the Deaf community? He’d have to start learning ASL at that point when it would’ve been much easier to have been brought up with it. I completely get why this approach works for some kids, but I find it limiting. I want him to be able to make his own choice down the road and I feel like restricting ay form of communication would not allow him to do this. Also, from a language development perspective, it doesn’t make sense to me. Yes, this might develop the hearing sense a lot faster, but is it really helping with language? From my experience with ESL students in my classroom, if they had mastered their own language and then learned English, they tend to do better overall. Also, the whole reason Baby Sign is taught to hearing babies is the theory about how the child will have an enhanced vocabulary and be a better communicator because he/she was able to develop the communication parts of the brain before even speaking.
We’ve chosen to go with the Total Communication method. It uses every and all means of communication that is available. This might seem like a no-brainer, but there are conflicting philosophies about this and how it might not allow for the child to focus and master one form of communication. Every option has Pros and Cons, but the MOST IMPORTANT thing to me is choice. We, as his parents, need to be given the choice of what WE feel is best for our family. I could never go to a hospital or work with doctors who said it was their way or the highway! Another reason why we love Children’s Hospital : ).
This choice is what has led us to wanting CIs, learning ASL, and joining the Deaf Community. Can I side track for a second? Something I didn’t know before all of this was the difference between the phrases Deaf World, Deaf Community, and Deaf Culture. Here is what I’ve learned from ASL University:
- Deaf Culture consists of the norms, beliefs, values, and “mores”* shared by members of the Deaf Community. Note: the term “mores” means: “The accepted traditional customs, moral attitudes, manners and ways of a particular social group.” — dictionary.com
- In general, the global “Deaf Community” consists of those Deaf and hard of hearing people throughout the world who use sign language and share in Deaf culture. Hearing family members, friends, interpreters, and others are also part of this community to the extent that they use sign language and share in the culture.
- The Deaf World refers to all “d”eaf-(physically) and hard-of-hearing people and the people with whom we regularly interact. For example: teachers of the Deaf, interpreters, audiologists, social workers, religious workers, parents, siblings, etc. They are all part of the Deaf World but not necessarily members of the Deaf Community.
The last few weeks, we have started developing our first relationship with the Deaf Community. We have joined The Learning Center for the Deaf – an amazingly supportive, nurturing program that has welcomed us with open arms. Like being in a foreign country, it can be overwhelming being in a place where English is the second language and you don’t speak the primary language, but the people there are so patient and understanding and while we are still in the beginning stages of learning ASL, we’ve never been made to feel like outsiders or awkward for not knowing how to communicate in their primary language. Kayla is offered every opportunity that her brother is even though she is hearing and has been loving the Deaf Playgroup- the teachers are deaf and a lot of time there is not a translator with them so she has been left to her own devices and they say she is communicating via the signs she knows, pantomime, and even a bit of lip-reading! Pretty cool. I am hoping that we can arrange for her to somehow continue with this when school starts in September.
We have been given a TON of information from the center (and from our Early Intervention teacher) and I am excited about learning about raising a baby who will be part of Deaf Culture and all the resources will we have to aid us. Yesterday, there was a deaf girl in our group who currently attends Gallaudet University and she told us all about her life, growing up in a hearing family and what her life was like academically and socially. The same message kept coming through over and over and over: She lived a life just like any other person who is part of a loving, supportive family and community. Again and again her answers to our questions were no different from an answer a hearing 22-year-old would give.
We are also learning how we can enhance Finn’s development as a baby. We start a Shared Reading program in September to learn how to read books to a deaf child. We are finding toys that are much more geared to his visual and tactile responses than a lot of the toys we had for Kayla (which we are realizing now are so much more geared toward stimulating babies’ hearing sense!). Actually, I have been meaning to post something on Facebook asking if anyone out there has any baby-safe mirrors that their kids have grown out of, we’d happily take them off your hands! We will be setting up mirrors all over the house so he can see us coming in and out of the room or other things around the house. Tricks like that are things we are learning about to help him utilize his other sense while we wait to see if he will be a candidate for CIs (the MRI is coming up so soon!! 15 DAYS!!!!)
I end this entry with two things: first, the usual ( but never waning) thanks to everyone out there who have shown support. We appreciate every call, text, e-mail, FB message, etc. that people from both our past & present have used to reached out to us. Second, a cool list I have compiled about some things I have learned about deafness that I thought others might find interesting:
Interesting Facts About Deaf People
– Deaf people have safer driving records than hearing people nationally.
– The huddle information used by football teams originated at Gallaudet College, a liberal arts college for Deaf people in Washington, D.C., to prevent other schools from reading their sign language.
– A Deaf center-fielder for the Cincinnati Reds, William Hoy, invented hand signals for strike and balls in baseball.
– Alexander Graham Bell, inventor of the telephone, was originally an instructor for Deaf children and invented the telephone to help his Deaf wife and mother to hear.