Friday, December 5, 2014

On Hearing Impairment.....

I have been asked by a reader to write about Laurel's hearing impairment and how that impacts her daily life as well as what our therapy schedule looks like. Yippee! I get to talk about two of some of my favorite topics, adoption & hearing loss! 
A little background for those who may not know. Laurel was adopted from Ukraine in 2009. She was almost 2 years old and had no hearing aids or therapy prior to adoption. We knew she was deaf and may have some other medical issues when we pursued her. It was a clear calling from God. Deafness terrified me (how would we communicate?, how would I get basic concepts across to her much less concepts about God & Jesus!). However, the Lord clearly told me "I know you can't do this but I can!" So, off we trotted to Ukraine to find our treasure. 
Laurel was born very prematurely which is most likely the cause of her HI. 

When we met Laurel, she had NO speech/language. She would make noises or scream. However, I knew cognitively she was ready to learn it because the first day I visited her I put her hand to my throat and said "Mama" and she repeated it. She also learned to sign, "cracker", "mama" and "cat" the first day I met her and could use them appropriately. We took some signing cards with us and taught her basic signs to reduce frustration for everyone. She was so ready to communicate! She learned so fast. As far as behavior was concerned, she was very stubborn ( which would serve her well), and was all into everything! Most of that was the fact that she was in an orphanage and unable to explore at all so new freedoms were overwhelming. We truly had very little transition issues when home. Once she learned food was always going to be there and started understanding the Signs for "No, Yes, Eat, Drink, names of ppl, bed etc" tantrums decreased. She was very good at reading body language and lips and did not like to stray far from us which helped. I can imagine with a child who is resistant to being near the parent that this would be a challenge.

In Ukraine, Laurel had numerous medical issues on her chart (most of which are not in play at all now) and a few which were surprises. One of those was that when she got to the US, she was put under anesthesia for an ABR (hearing test) and they found she had something called Auditory Neuropathy Spectrum Disorder. Even back in 2009 it was a relatively new finding and there was not much information on it. I was scared! She didn't have just Sensorineural Hearing Loss or Conductive Loss but it was this other less known kind. Basically, it means the nerves were "misfiring" somewhere in her ear/brain. It is like a frayed lamp cord, sometimes she would be "on" and sometimes not. I charted her good and bad days and would see that days that a weather front (rainy, windy,cloudy) would be more "bad hearing" days. It is not scientifically backed up at this point but many AN mama's I have talked to notice the same thing. Within 2 months of arriving home, Laurel received and evaluation from our local Developmental Evaluation Services which showed she was behind in all areas of development (duh!) and set her up from OT,  and HI services. She received in home therapy 2 to 3 times a week through them until the age of 4. Within 2 months of being home she was also finally given hearing aids. It took a while because unless she could show on paper an impairment she would not qualify. So, she had to learn to "take the test".(When you hear the beep, a toy will pop out and play so eventually conditioned response would show that she would look back expectantly at the toy when she heard the beep). We were warned that kids with AN may not respond to hearing aids. It was kind of a try and see. 

Now, before we adopted Laurel, we had made the decision that if at all possible we would bring her into a hearing and speaking world. My mother had worked at a school for the deaf and saw the challenges a non speaking/non hearing child would face. We were preparing ourselves for the fact that she may not be able to ever speak or hear but our choice and prayer for her and we believe HER choice would be that she could come as close to "normal" speech and language as possible.  By doing this, it would greatly broaden her circle of friends and family that could communicate with her. That was a decision we had to tell many therapists. Once we made that choice, we were told to quit signing and concentrate on her hearing only. There were times that we were in noisy environments or she was too far away to hear me and I would still supplement signs for her. This decision proved to be a great one for Laurel as she started  to really pick up speech and language. 

When Laurel was 3 she was referred to a local hospital's clinic that specializes in hearing impairments and therapy. She was accepted and started once a week therapy there. It is a wonderful place that teaches the parent to do the therapies at home and we practice. Around the age of 4, it became evident that while Laurel was making some progress, she had plateued and there were some sounds she just could not hear (ex: "s", "f"). We began to think about Cochlear Implants. This was a scary venture for us because in order to do this, all of her residual hearing had to be destroyed to put in the implant. Laurel's right ear was her "good" ear (Moderately Severe). We were reluctant to do this because she could hear some in that ear. However, a few months later, God made up our minds for us which had been our prayer! Her testing showed a gradual decline in that ear. She was losing her hearing. So She was implanted with a Cochlear Implant. It was 3 hr. surgery and she came home that day. She recovered quickly and we eagerly waited the 4 weeks until we could turn the ear on. The big day finally came and when they turned it on, she could hear the beeps!! It was overwhelming to her at first and we started slowly but she gradually started back over with the therapy and made her way back up. It became evident months later that she could hear much more clearly with this implant!! 

During this time, she was accepted into an integrated preschool classroom for hearing impaired and typical children. She had 1 hearing aid and 1 Cochlear Implant. All of the teachers wore microphones and it was a great fit for Laurel. She went to this class for 1 year until Kindergarten. A year after the 1st implant, Laurel was implanted with the 2nd implant. We had to start over on the speech and language chart to catch this ear up but as promised, progress came much more quickly.

Laurel is now 7 years old. Unless people know she is hearing impaired, they usually cannot tell anything is different in her speech. She sounds pretty typical. Her Cochlear Implants made a HUGE difference. She needed them in order to get a clearer signal and be able to process as quickly as she can. She still has days that are harder for her to process speech and language than others. Some days it truly takes several times to tell her something before she understands it. Those days she seems more irritable as well and I believe it is her Auditory Neuropathy. But, those days are much less than with the hearing aids and we have told her about this disorder in order to help her cope with it better. It seems to help her to understand what is going on inside her body She has always had a lot of trouble with music and singing (getting the words in  order). The new Music program on her Implants have helped with that. Most of what she struggles with now is not from the hearing impairment but from the process disorder part of the impairment.  She is learning to read, likes math and is a very smart little girl! She is the hardest working thing I know!

So, our journey has been amazing with Laurel although  not always easy or clear cut. God has always shown up and helped us when we didn't know which path to take. From what I have observed, hearing impairment is kind of an "invisible disability" and it can also mask other issues. However, we live in an amazing age with wonderful devices and therapies to help one live as easily as possible. We are so thankful we took the leap and rescued this girl!
If anyone has any specific questions, please feel free to email me at