Thursday, May 03, 2007

Thoughts on deafness

I feel the need to share my thoughts on a topic that in all fairness, I am in many ways not entitled to have an opinion on, and that is deafness. First a bit of background. My youngest son is deaf. He was identified during the newborn screening process and at the time still had a significant amount of residual hearing. He was wearing hearing aids by the age of 6 weeks old. This was NOT fun as a parent and even less fun when he began to take them out and use them as a handy teething option. The first set cost approx. $3000, none of which insurance covered, and water destroys them. See the problem?
Anyway, he is now in second grade and his loss has continued. We learned a couple of years ago the cause of hearing loss is a genetic condition and he is rare in that he had any hearing at all when he was born. I fully expect him to loose all of his hearing at some point in the near future. As it is he has days that he hears better than others. My son currently has very understandable speech due to the hard work he has put in since the age of two and the ability to utilize the residual hearing he had when he did. He is also intelligent and understands the rules of phonetics and applies them to new words he encounters. Unfortunately the English language is full of exceptions to the rules. I also credit much of his success to his early exposure to sign and later American Sign Language (ASL). He was exposed to language from the beginning even if much of it wasn't through auditory means.
I have learned more in the last 8 years about ears, hearing, hearing aids, FM Systems, language development and speech than I ever even knew existed, let alone wanted to learn. This is good as it helps me be a better parent for my son.
So, you are probably wondering where the opinion comes in. I am horrified by the number of parents who have deaf children that never take the time to search our a deaf adult (or 2 or 3) to learn more about what being deaf is like. What they learned growing up and suggestions they would make. The decision is ultimately the parents, but a person who has lived the life is much better experienced to give opinions and advice than ANY doctor, audioligist or speech language pathologist EVER will be. They can provide medical information and opinions, but they are not deaf and so do not truly understand.
In the area where I live there is currently a large emphasis and push for cochlear implants and oralism. I believe cochlear implants have a place. Do not misunderstand and think I am anti-cochlear. I do not, however, believe that at this point I would implant my child without it being his decision. There are too many factors. There are also just as many or more stories when it was not successful (as defined by the hearing community) as there are success stories. When it doesn't work out, the parents are made to feel as if the failure is their fault. If they had only provided more speech therapy or not allowed the child to sign, etc. The truth is that sometimes it just doesn't work. The opinion that if you allow a child to use sign they won't learn speech is the stupidest thing I have heard. As my husband says, "That is like saying if a child eats with their hands, they won't learn to use a fork." As a point of education, speech is not a language, but a means of communicating a language the same as writing.
I don't believe that the burden of communication should be placed on the shoulders of a small child rather than the parents. When parents refuse to take any approach but to implant and then work on speech, and only speech, all communication responsibility is the child's. I can honestly say that I have never met a Deaf adult who said how they wished their parents hadn't learned to sign. However, I can tell you many, many stories of adults who feel their parents didn't care enough about them and were just plain selfish when they refused to learn to sign in order to communicate with them. That the parents did not love them enough or accept them as they are.
I NEVER want my son to think this. My husband and I have spent many hours learning ASL and work to expose him to others in the Deaf Community. I want him to have role models and mentors available that are Deaf with a capital "D". Proud and successful Deaf adults.
Those in the medical community and the parents that follow who are insisting the implants are the way forget that there are many for whom implants are not an option. Depending on the reason for the hearing loss it just may not circumvent the issue or be of any potential benefit. What do they propose for this group? At the moment, nothing! They pretend as if this group does not exist in an effort to further their cause.
I have rambled on for some time, but I will say that as the parent of a child who is deaf, I am proud of who he is. I can honestly say that if I had been asked before he was born that I would never have wished for this. I am still sad at times. That does not make him any less of a person or a success. It does not mean he needs to be "fixed". I love him as he is and hope he does the same.


Anonymous said...

What make are your on's hearing aids and if you wore them, would you cover them with your hair?

Alex said...

His current pair is Seimens Signia and are about 4 years old. We are currently exploring/researching his next pair. He wears the over the ear type as it is my understanding from hearing aid wearers that they do work a bit better than the in the ear kind and we need all the help we can get :).
I can't honestly answer if I would cover them with my hair since I don't have them. I can tell you there was a point in my life when I knew less that I probably would have. The adults I know do both. Those who don't cover say it is for one of two reasons and sometimes both. If people are aware they are more likely to look at them when they speak. The other reason is a pride in who they are as they are. A badge of honor of sorts.
HTH :)

Anonymous said...

I decided long time ago I wasn't ever going to post here, mostly because we all need parts of our world that are private from our spouses, even if it's only an illusion of privacy. That said...I probably don't tell you enough how proud I am of how you've handled the whole situation with Brandt, and how grateful I am of the efforts you've made to drag/force/open my eyes. I guess we just have to wait another 15 years or so and see what Brandt thought of his upbringing, huh?

Linda said...

Dear Alex, I just read your Thoughts on Deafness and I have to say it is so well written and your point is excellent. I wish so much that we could meet, I would have been so proud to have you for a parent when I was growing up as a deaf child in a hearing world. Your son is so lucky to have you and he will succeed and surpass any expectations you have for him. Thank you for saying the one comment about learning sign language will keep him from speaking. I taught for 25 years about this very topic and learning sign language is so important because it is language and speech is not.......just what you said. Learning to communicate!!!! I love it.