Things are good…just different…

Just in case you don’t want to read the whole story, I would like to start by sharing two very important things I have learned that help me a lot. The first is find other people with deaf kids – it makes everything so much easier, and second, just blow off all the stupid comments you will hear from all kinds of people – friends, family, strangers, doctors, etc.

Well, we had been married less than a year when our first daughter was born. Everything was “normal” – the pregnancy, the birth, etc. Estie was born and we were home from the hospital the next day. Everything seemed fine –she was our first and spent a lot of time on the floor of our apartment on a baby blanket. She always seemed aware of when people were coming or going. Looking back, I’m sure she felt the vibration on the floor. At her 6 month check up, the doctor asked if she was babbling, and yes, she had started. But when we went back at 8 months, I realized she had stopped. The doctor’s first thought was a problem with her vocal chords – so he sent us to an ENT to check out her throat. Once we got there, the ENT said it was much more likely a hearing problem and put us in the sound room. This was the first time this idea was presented to us. She didn’t respond to anything in the sound room, but we wrote if off as to her not recognizing the audiologist’s voice. She referred us for an ABR. In the meantime, we tried all the home tests with banging pots and pans behind her. We couldn’t tell anything. I remember one day she was standing in her crib looking out the window, and I called her name, then I yelled it – then I went over to see what was so interesting outside that she wouldn’t turn around! Yes – Denial!!

After her ABR, we found out she was deaf – with a severe to profound hearing loss in both ears. Shock!! Tears!! All the questions started ….. What do we do? Why? How??? We were totally overwhelmed. We were sent to a place to get more information – it was an aural type program. To us, their way seemed like too much work for us to be able to communicate with our baby. They emphasized how important it was to get hearing aids right away – they would help a lot. We borrowed a few books from them and went for ear molds. During our long 4 week wait for the molds, we took a family trip home. When we told the family, my sister-in-law told us she knew a Deaf teacher from Ameriocan School for the Deaf. We met with her and she introduced us to the idea of Deaf culture, and we realized there were two totally different schools of thought. We told her what the doctors had said, and she disapproved. I feel we were very lucky to meet such a strong Deaf role model so early in the process. She emphasized sign language, showed us a few signs, and suggested we start using them immediately.

One sign she taught us was ‘shoes’. That took on many meaning for us – we would look for ‘shoes’ when it was time to go out, take ‘shoes’ off for bedtime, and more. We were also reading as much as we could find about hearing loss, and different approaches to it. We decided to start signing, and go to private speech therapy 3 times a week, and see what happened. After a few months, Estie was picking up the signs – she seemed to understand some and started copying them. We were taking a class to learn more. She wasn’t responding to any speech or sounds, but we continued with private speech until she was about 7 years old, when we dropped the private speech, and relied on the school provided services.

Starting at age 3, we put her in a TC program. She was really lucky – there was a big group of deaf kids her age for her to play with. In third grade we slowly started mainstreaming her, and by fifth grade she was fully mainstreamed. She just finished her first year of junior high and did very well. Her language is right on target, and she signs fluently. She rarely wears her hearing aids since they don’t benefit her much. She doesn’t have much useful speech, so now she is focusing more on speech reading during therapy.

When Estie was 3, our second daughter, Rikki was born. The hospital she was born in didn’t have an infant hearing screening, so we scheduled an ABR for her when she was a few days old. We didn’t know what to hope for – deaf like her sister, or hearing like us. She, too, is profoundly deaf. We experienced some of the same feelings again, but not as strongly. She was lucky that we already knew a lot of sign language, and used it with her right away. For us, the second time around was much easier –we saw what was already working for us and continued it with Rikki. We started mainstreaming her in kindergarten since she didn’t have a group of deaf peers to go to school with. She is very similar to her sister in how she communicates, although she is slightly more orally inclined. She also rarely wears her hearing aids because they don’t help her. It’s really nice for them to have each other – although some days are nicer than others!

Now they are both very involved in school and park district activities. We have to drive far to get to their friends’ houses and to deaf events in the community, but mostly everything is good. Difficult situations come up, like family reunions, but we are able to deal with them. All the new technology really helps them a lot. They keep in touch with family and friends through IM on the computer, get to go to open-captioned movies, and can’t wait to get a pager. I really think the well-known story about planning a trip to Italy, but ending up in Holland is a good explanation of how I feel – things are good – just a lot different than expected.

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