Working on signs

Incorporating sign language into our daily routine has been very difficult for us as a family. After using only our voices to communicate for roughly the past 29 years, Ben and I have to really work on signing to Abigail. Remembering to do this is one of the most difficult hurdles we have to overcome. While our signing vocabulary is expanding every day, we still are not signing to each other or to Benjy regularly. We often forget to use our signs in key teaching moments like at dinner or bath. Our hearing therapist and deaf mentor had some great ideas that we are going to implement over the next week to help us get comfortable with signing:

1. Establish a quiet time at dinner–even if just for ten minutes use only your signs to communicate. If this means all you say is please and thank you or dinner’s good–that’s fine. Abigail’s first language is visual and she will be focused intently on your visual communication.
2. Put of sign flash cards in various areas of the house that can serve as key teaching areas for both Abby and Benjy–the bath, the play room, the dinner table, the mudroom. Each area can emphasize 1 or 2 signs to start and the cards will serve as reminders to use our signs as well as our voices to communicate.
3. Sign to each other and to your family–if you don’t know a word, oh well! The more you practice, the more natural signing will become to you.

We plan to put these techniques to practice over the next few weeks and hope that it will help us to sign more often. Learning sign language is hard, but remembering to use when you’re hearing is even harder.

Deaf Mentor Services

This past week we had the first meeting with our new Deaf Mentor here in Ohio. We received deaf mentor services in Pittsburgh while Ben was deployed and I thought that the help and guidance that I received was vital. Since returning to Ohio not only have I missed these services, but also I feel that we would really be able to benefit since our family is whole again. RIHP (Regional Infant Hearing Program) was able to connect us with a new deaf mentor and we have services up and running again. I would highly recommend obtaining this service if it available to you–it plays a key role in introducing your family to the deaf community. Since we are a hearing family, we knew next to nothing about deaf culture or about what life is like when you’re deaf, what life will be like for Abigail. There are no wrong or inappropriate questions when it comes to your deaf mentor–just answers, answers for anything that we as hearing parents might wonder about.

I learned so many things that I had never even thought of, but probably the most important thing that I learned was that I didn’t have to be scared of the deaf community. It didn’t matter that I was just learning ASL, it didn’t matter that I still talked while I signed and it didn’t matter that we were hearing and they were deaf. Everyone that I met was so eager to find out about our family and we were so eager to find out about others.

Some people have questioned our decision to become involved with the deaf community since Abigail isn’t really deaf, she’s hard of hearing. My response to that is that she’s not really hearing either, she’s hard of hearing. We believe that she should be involved with both the hearing community and the deaf community because she falls somewhere in between. We could decide not to teach her sign language, we could decide not to take her to deaf community events, we could decide to ignore the fact that she has a hearing loss altogether. But it still wouldn’t change the fact that she has a hearing loss and as her parents we want to provide her with every tool possible so that she can succeed.

Results of the Developmental Assessment

We recently had our IFSP and received the written reports from the various evaluators that were present during Abby’s assessment. The physical therapist determined that there was really no concerns about her gross or fine motor skills and that her size was probably the biggest inhibitor to her crawling. (She’s a large baby who likes to eat!) The speech therapist and the EI both confirmed our thoughts that she did have a speech delay-approximately a two month delay. Although this might have been expected for a baby with hearing loss, it is certainly not what we strive for and she will be held to the same communicative milestones of a hearing baby. The major concern for her speech development was her failure to babble–i.e. no repetitive sounds like ah ah ah, no consonant sounds, and no back and forth “game-like” communication. Why this might sound silly, these beginning sounds are the basis for compound sounds, then identifying sounds, and so on and so forth.

The speech therapist gave us a Nuk brush to stimulate her tongue and mouth in hopes that this will lead to a greater production of sounds. We also are going to continue to encourage the “back and forth” game play with a variety of sounds. One of the things that Ben and I learned during this IFSP is that any signs that she learns to use will count toward the “15 by 15″ count. (This is a very general guideline that a toddler should use 15 words or signs to communicate by 15 months.) We are going to continue to sign to her regularly and will begin medical model speech therapy at about 12 months.

So, the IFSP conclusion…

• We will continue to have our hearing therapist meet with Abigail once a week;
• Our EI will come every other week to monitor Abby’s progress in other areas of development;
• The speech therapist will come once a month to visit Abigail and provide us with ideas to encourage her communication;
• We will receive the services of a deaf mentor to help us build our sign language vocabulary and work on ways to incorporate signing into our daily lives; and
• We will begin medical model speech therapy at 12 months.

IFSP success for now at least…

Developmental Assessment

When we returned to Ohio and thus to Help Me Grow (Ohio’s early intervention organization), we needed to have a second assessment done to identify how Abigail had progressed over the past six months. An assessment is a meeting between various professionals that will be involved with your child’s care and your family. It is a chance for each of the professionals to observe and evaluate Abigail against their respective areas of development. Our assessment included a speech therapist, an early intervention specialist, a hearing therapist and a physical therapist (they’re were some minor concerns that she had not started crawling yet.) Each professional evaluated Abigail while we discussed daily routines, Abigail’s responses to family members, and any concerns that my husband and I had with her development.

Our EI (early intervention specialist) used the Hawaii Early Learning Program (HELP) charts to monitor Abigail’s development, while the hearing and speech therapists used a variety of games to monitor both Abigail’s verbal and non-verbal responses. The physical therapist conducted a variety of strength and balance tests to evaluate Abigail’s motor skills. Each professional will be responsible for providing a copy of their findings reports at the IFSP. These reports will become part of the IFSP and serve as a baseline for future evaluation and comparison.

Abigail’s Second Hearing Test

Yesterday was Abigail’s second hearing test in the sound booth. If you haven’t ever experienced a pediatric hearing test, I will explain a little bit about how the test is done. The test is conducted in a soundproof room and usually requires the presence of two audiologists. There is one audiologist in the soundproof room with you and a second controlling the sound board (where the various tones and sounds are produced from). The idea behind the test is that if your child hears a tone, sound, etc. he/she will produce one of several reactions–a pause in play, raised eyes, or ideally they will look for the sound that they heard. This is why there is an audiologist that sits across from you–it is her job to monitor your child’s reaction. If the child turns toward the side of the room where the sound originated they are rewarded by seeing a toy that was once hidden in darkness move and light up. The more sound booth tests that a child has taken, the more likely they are to search for which one of their friends (toys) made the noise.
Once I understood how these booth tests worked, I immediately questioned how accurate these tests actually were. It seems to me that there is a great deal of subjectivity in these tests–what one audiologist sees as a pause, another might not. In fact, how do we really know that her pause should be attributed to sound and not simply to gas. In this test it seemed like Abby was just searching for her friends (toys) and wasn’t really paying attention to any tones at all. Since her first test had indicated that her loss may fall more in the mild to moderate loss range, I was eager for a second round of results to confirm this. Generally both aided and unaided tests are conducted in the sound booth–not only do we want to confirm that her hearing aids are functioning properly for her, but also we want to verify that her hearing hasn’t degenerated at all. This test didn’t seem to go so well and unfortunately we were only able to test her with her aids on. Our audiologist did not seem concerned and asked for us to come back in three months for a follow-up test.
At first I wasn’t really concerned about it either, but the more I thought about it, the more I felt like I needed some sort of confirmation that her hearing loss hadn’t gotten any worse. Her hearing aids were being programmed based on the first sound booth test that indicated she only had a mild-moderate loss, but she still wasn’t babbling. I decided to call in and ask for a retest just to allay my fears that we might be missing something. I mean we already had wasted so much time because her hearing aid volume wasn’t disabled, I didn’t want to sit by and just accept something when I had such a bad feeling about it. Once again, it didn’t seem to be a concern to my audiologist that she hadn’t had an unaided test in six months. She again stated that she thought she would be fine until the October time frame and then we would do the unaided portion of the test first. Maybe it was because she hadn’t seen Abigail since the beginning (we had worked with four different audiologists because of employee turnover since Abigail’s initial diagnosis in October 2008), or maybe it was because I was too pushy. I am not sure, but for me it was the final straw–I had decided that we would transfer Abby’s audiological care to Cincinnati Children’s Hospital.

Fast Forward…A lot!

Well as you can see I have been somewhat sidetracked when it comes to this blog–maybe because in the last four months I have moved back to my house, welcomed my husband home from Iraq (yet again), left one early intervention program for another, undertaken a major home renovation, etc. It seems like I blinked and it was already time for fireworks! Since I haven’t written in a while and now am so far behind in telling Abby’s story, I am going to do a catch up post. So here goes…

Abigail has now been aided for 234 days (she was aided on November 6th at about 10 weeks.) For the first 215 days we were unknowingly operating the volume control (this feature was supposed to be disabled by our audiologist) and she would go through periods of crying and pulling them out repeatedly, which we have since attributed to the volume being way to loud and causing extreme discomfort for her little ears. I am quite displeased with our first audiologist who dismissed my early concerns that there was something wrong with the volume, however I am unable to voice my concerns since she conveniently moved just 1 week before discovering the problem. I hate the turnover in this industry, but I will reserve that for another post at a later date. We now have her aids up and running properly and she seems to be happy as a clam!

Her early blood tests indicated an elevated level of triglycerides and we were referred to a gastro doc to follow up. Our ENT explained that sometimes high levels of cholesterol can lead to hearing loss and we definitely want to preserve the residual hearing that she has. The gastro doc suspected that it was simply an inaccurate test result and reordered a second round of bloodwork. We recently met with our pediatrician who informed us that this second test also indicated a high cholesterol level and we are awaiting our follow-up with the gastro doc to discuss what exactly this means.

We moved back to our Ohio home in early May (my husband was deployed for 7 months to Iraq and we relocated to Pittsburgh) and started early intervention services back up. Abigail received a second developmental assessment at 9 months in preparation for a new IFSP to be created so that we could begin services as soon as possible. I will talk in my next post about the assessment and her new IFSP.

Abby’s First Booth Test

My mother-in-law and I headed back to Ohio for Abigail’s first sound booth hearing test this past weekend. I had tried to schedule her hearing test, gastro appt. (for the high triglycerides that popped on her original bloodwork), genetic eval and ear molds all for the same day since we were coming from Pittsburgh. Everything went very smoothly, but I am slightly confused about her hearing test results. This new test indicated that Abigail only had a mild/moderate loss rather than the initial moderately-severe loss that her ABR (Auditory Brainstem Response) test showed. While I am incredibly happy that her loss is not as bad as we had originally thought, I am a bit concerned that we are going to be programming her hearing aids to correspond to these new results. The sound booth test is different than I expected and I am not sure how accurate it is. The entire test is based on subjective interpretation of Abby’s reactions to sound. I will have to do some research to put my fears at ease, but for now I am cautiously happy about these results. I can’t wait to tell Ben.

Below is a picture of a standard speech audiogram–the object pictures are placed on the audiogram where their typical sound decibel would be and the letters are representative of where those sounds would be in the speech banana. I have included a picture of Abigail’s first hearing test audiogram as well so that you can understand exactly what we think she is hearing right now.

The A symbols refer to Abby’s aided hearing (what she hears with her hearing aids on), the circle symbols refer to what she hears unaided with her right and the X refers to what she hears unaided with her left ear. The gray shaded banana shaped area is referred to as the speech banana–where most of the sounds of our speech exist. If she is able to hear above that speech banana, she should be able to develop speech normally. As you can see her aided results put her above the speech banana and just below the highest frequency sounds of “f,” “s,” “th.”