Monday, November 21, 2011

Woo-hoo!

R is signing!!! (He'll be 10 months on November 30.) We've seen "eat", "more", and maybe "finish" and "butterfly". I know "butterfly" sounds unlikely, but we have butterflies hanging above the changing table, so it's a sign he's seen pretty much every day, and it was L's first sign too! So exciting! Here we go!!

And, L starts school with J's D/HH teacher, interpreters, and speech therapist in January. Just moving right along in our house!

Saturday, September 10, 2011

Perfect Sequence

Sometimes things occur in perfect sequence. I recently read an article called "Music to Her Ears" in Parenting magazine that upset me with its bias toward and misrepresentation of cochlear implants. I've been working on a response letter to the magazine. I've had a difficult time organizing my thoughts - the topic of raising deaf kids is a sensitive one for me! :)

So, after a few weeks of reorganizing and rewriting my thoughts, I came across this blog post by Rachel Coleman. Everything I read by her makes me a bigger fan of hers. Please enjoy this and consider its message!


My Two Cents: Cochlear Implants
Dated: 7 Sep 2011Posted by Rachel ColemanCategory: Crazy Little Thing Called Life, My Two Cents19 CommentsI used to feel sorry for children who had cochlear implants. I did.

When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she was age 18.

We think that Leah was born profoundly deaf. We didn’t discover her deafness until she was 14 months old. When her deafness was diagnosed we immediately started signing with her. It seemed the obvious choice, I mean, she was deaf. We never bought into the old wive’s tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker.

When Leah was seven she was no longer using hearing aids, because, as she put it, “They don’t work! They don’t help me, they just make my ears itch.” She had gone without amplification for a few years and then, at age seven, my daughter asked for a cochlear implant.

Let’s just say there were a few things I had to get over… oh, like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?)

Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing.

I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time)

When someone receives a cochlear implant there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop.

Leah is a very successful implant recipient, we feel that these are a few of the factors that helped her to use it so successfully.
1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool.

2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself.

3. We always focused on our child’s strengths. Prior to her implant, we did not do private Speech Therapy. Why? Simple. Because Leah couldn’t hear:) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire.
Speech is not a language. Speech is one way to deliver a language.
English is a language, American Sign Language is a language, but speech… speech is a skill.

You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing.
(If your child is deaf please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!)

4. Language doesn’t delay language. The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication.

Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips.

Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all.

If you are considering implanting your deaf child, my recommendation is this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure.

Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.”

My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue.

Friday, May 20, 2011

Authenticate your children - ALL of them

"If parents are not able to accept the fact that their child is deaf and continue to deny the implications of the deafness, the resulting effects on the child are to encourage his own denial and lack of authenticity. Such a child is thus unable to accept himself and his capacity to emerge or become a unique person is blocked. He lives an existential lie and becomes unable to relate to himself and to other deaf individuals and to the world in a genuine manner."

Thursday, May 5, 2011

the possibility of another hummingbird

So, R still hasn't been able to pass a hearing test because he has persistent fluid in both ears. He's 3 months old now, and considering our family's history of 2 deaf children, we need to get his hearing tested. We've waited and tried a round of antibiotics, with no success. The next step is a myringotomy and tube placement, and get his ABR done while he's already sedated.

It's been a hard decision to have tubes put in our child's ears. I've been generally and ignorantly opposed to tubes, and of course, am not thrilled about little R having to be heavily sedated for the procedure. However, I do know that persistent fluid creates a hearing loss whether he has sensorineural loss or not, and the fluid itself can even cause problems if it stays too long. Luckily, R hasn't had any infections that we know of, the fluid is just hanging out in his ears.

So, now that the date is set for his ABR, we face the information that will bring. I've sort of avoided the thought of him being deaf, too. Being hearing ourselves, we want him to hear, but having 2 deaf children already certainly softens the blow. Learning that J was deaf was the hardest by far. We got blasted into a while new world, culture, learning style/teaching techniques, language, etc. It was scary! L was easier, and now, I think R will be about the same if we find out he's deaf.

I guess we'll know by the end of this month!!

Saturday, April 16, 2011

little reminders

Today I saw some one we haven't seen in a few years... always nice to say hi to an old friend. What I am sitting here in my house thinking about now, though, are her comments about J. Wow! He's come a long way in a few years, and he surprised her with his progress! I'm smiling :)

Monday, April 11, 2011

PLATEAU

So, we've been learning ASL for over 3 years now, really studying it for 2 of those. Can I just say again how big of a signing advocate I am? Sign with your deaf kids!!!! Hearing parents, I am talking to you. It's a challenge to learn a new language as an adult, especially one that isn't spoken and comes with the added pressure of your kids learning it faster than you are. The benefits for your child are so worth it, though... first, the obvious, more language means better communication. We're bilingual! You can read for yourself all the benefits of being bilingual.

But beyond those obvious benefits, think of all the emotional and relational problems fixed with communication. Again, you can read all about the issues isolated children face. I couldn't bear to think one of my children felt isolated in his/her own home. Limited langauge only further isolates a child who already knows he/she can't hear while everyone else around him/her can. It's turned out to be a blessing that we have 2 deaf children - they have each other. It's not so bad to wear your hearing aids when you're not the only one putting them on every day. Signing isn't weird when everyone in the family does it all the time.

All that said, we're quickly hitting a plateau. Signing classes at J's school have ended, and our signing education is largely left to us now. D and I have decided to study together once a week in addition to our every day practice, and quick consulting for this or that sign. D also recently got the iphone. We're definitely not a "techy" family, but every once in awhile, one of these new devices grabs our attention. D added some ASL apps to his phone, and it is so convenient to learn a few new sings while you have a few minutes to play on the phone.

We have to keep pushing now to become truly fluent. I know enough signing to get by, especially with my kids. It's too easy to become complacent at this level. A big wake-up call, though is when I try to keep up with a conversation between fluent signers. It becomes pretty obvious how patient these signers are with me!! This is the limited communication I mentioned above, except the tables are turned. Me, the English speaking hearing person is limited, and the fluent signers have to dull down their message, use simpler signing, sign slower, repeat, fingerspell more, etc. If I don't keep working on my signing skills, it will soon be my kids who have to dull down to communicate with Mom.

Yes, they know English. Yes, we can communicate effectively with English. We as parents do so many things to make life warm and comfortable for our children. D and I feel that using the languages they are most comfortable with is one of those things. If you don't think it's true that people with hearing loss prefer visual input, you should spend a day in my house! You can see the differences in the way they observe and handle new situations, even as babies.

We have a chance to be a part of another culture, we need to do it with the same enthusiam a person would learn Italian before moving to Italy! We have a chance to use 2 languages to describe our life experiences. Why wouldn't we take full advantage of this chance?