Information for parents, professionals and adults with ANSD




Summer 2000

Elijah at 7 weeks old

Our biggest concern for Elijah was his lungs. We went to visit the pediatrician on June 6th. She gave us the name of a pediatric pulmonologist and helped us get set up for Elijah’s next ABR. We went to see the pulmonoloigst on June 19th. He renewed Elijah’s prescriptions for diuretics. These medicines helped keep the fluid off of Elijah’s lungs. We would see this doctor monthly for quite some time. He also said that Elijah could be on oxygen until his first birthday.

We then went to Children’s Medical Center on June 29th for Elijah’s ABR. David, my mom, and I all went. Due to his prematurity they did not want to sedate him, and thankfully Elijah cooperated and slept through it all. We did the ABR first and then his ottoacoustic emissions(OAEs). We waited for the results. The audiologist explained the ABR having mirror images. She also explained that Elijah had present OAE’s which were very robust. She said that this was an indication of Auditory Neuropathy (AN). I had taught deaf children for 10 year and never heard this term. I made her explain it about 10 times. She explained that hearing aids would not benefit Elijah. She suggested we come back in 3 months for another test. She also suggested we use Cued Speech since it was so phonetic. I used Signing Exact English(SEE2) at school and was quite proficient in it.

We drove home even more confused than we had before the test. I called Becky and she had heard of AN, but didn’t know much about it. I came home and started doing my own research on the internet. I located a web page that had a telephone number and I called and left Elijah’s information on a Friday. That next Saturday morning, Dr. Berlin called me. He said if I faxed him all of Elijah’s testing he would look at it and call me with his opinion. He also stressed the need for visual communication be it Cued Speech or SEE2.

The hardest part was waiting until the falling Monday. We had not received copies of Elijah’s testing so I had to call the audiologist. She faxed the testing to my mother, who then faxed it to Dr. Berlin for me. About four or five days later, Dr. Berlin called me again. He said that Elijah did indeed have auditory neuropathy. He again stressed the need for visual communication and said to call him any time I needed too.

Early Childhood Intervention(ECI) soon called and set up their first meeting. They would help coordinate efforts with the regional day school program in our area. I worked in another county than the one I lived in. Elijah should have gotten services through the program near us, but I requested services from the program I worked in. It took a few months, but by September we were soon getting services through the regional day school program for the deaf that I worked in.

ECI would also be providing other services for Elijah since he was premature. He was behind in his developmental skills also. We had gone to see the developmental pediatrician in July and she had noticed his head was flat on both sides, so we needed to change the way he slept to help form his skull correctly. We also had to work on upper body strength. We were scheduled to see her again in January 2001.

The summer flew by quickly. Elijah did well and we adjusted to the oxygen. Thankfully in July, the pulmonologist put him on liquid oxygen. We had had those big green tanks at home and a small one for traveling. Now we had a big unit with a small transportable unit. The small one was very light and easy to manage. All we had to do was fill it up before we left the house, and switch his cannule hose. There was just a switch to turn on. It was much easier than the tanks. We were also working on weaning him off of the oxygen. I had the pulse oximeter to help with that. He only went 5 min. the first time, before his O2 level dropped to below 90%. We would continue to wean every 3-4 days. It slowly improved.

I would soon be going back to work. The babysitter we used had kept Jacob since he was six weeks old. Jacob would also be starting pre-school. We visited the babysitter several times through out the summer and showed her how to use the equipment. She had been a nurses assistant, so she seemed well prepared.

I used Cued Speech at home with Elijah, but was still not sure if it was “right” for us. I am proficient in SEE2 and it seemed like every time I cued a sign would just jump off of my hands. I was still trying to make up my mind on this issue. I knew he was not understanding much because of his age and so I felt I had time to really decide.

ANSD Information is owned by the parent of a teenager with ANSD and  has no ties to any implant center, audiologist, hospital or clinic.