This isn’t the road we expected but…

When Randy was born, there was nothing out of the ordinary. He was our beautiful baby boy, which we were happy about because we already had a 14 month-old daughter.

His development was a little slower than his sister, but still within normal limits at every age. I didn’t notice anything any problems with him until he was about 15 months old and wasn’t babbling much, not even ‘mamama’. At 18 months I grew more concerned, but I kept it to myself for a few months longer.

At Holly’s 3-year check-up, I brought Randy (then 21 mos) along. I expressed my concerns to their doctor and she said that wasn’t normal and to get his hearing checked ASAP.

Well he didn’t do well in the sound booth, and the ABR soon followed. The results were a surprise to me and my husband. He had only a mild-moderate bilateral hearing loss. This was somewhat significant, but shouldn’t have been enough to prevent him from speaking at all.

We were referred to EI immediately, and the EI coordinator was great from Day 1. She scheduled the initial evalutation, and there we found out Randy was very behind in many areas and found out he would need ST, Aural Rehab, OT and DT. Rachel asked for my preferences for home or clinic sessions and made sure his therapies started in a timely manner.

Within about 2 weeks after Aural Rehad started, Randy was starting to sign. He was finally communicating! He was a lot happier once he had several signs under his belt and could use them consistently. His speech therapist also was fluent in ASL, and used it with him while teaching him to talk. During the whole time he was working with the therapists, he enjoyed it and probably never realized he was being taught.

We asked his audiologists about getting him hearing aids. They said no because the aids would only overwhelm him and he was better off without them. Even though we disagreed, we didn’t argue with them.

By the end of the EI program when he was 3, Randy was a totally different toddler. He went from the speech level of a 10-month old to speaking 3-word sentences. He also knew over 200 signs. He also seemed much happier overall, less frustrated and threw fewer tantrums.

One of the few problems we had with Randy was with his audiologists when we asked about hearing aids. We were told there were a few sounds that would be difficult to say, because he couldn’t hear them. But they still felt that the new sounds would overwhelm him and wouldn’t recommend the aids. When he was almost 4, suddenly we were told by one of his original audiologists that he really needed hearing aids and that she hoped it wasn’t too late for him. Considering the fact that his hearing had worsened hardly at all, this sudden change of opinion didn’t make sense. But now he has hearing aids and seems happy with them. I don’t think he realized what sounds he was missing until he started wearing them.

With the aids in, he has almost normal hearing except at lower frequencies. At his latest IEP in early September, the committee said his vocabulary was only 1 year behind. His pronunciation is more like a 2-2 1/2 year old child, though.

Even with his relatively mild degree of heaing loss, sometimes things can still be a challenge. When he is not wearing his hearing aids for one reason or another, he becomes riled up easily and gets frustrated when he thinks we haven’t answered his questions (if we don”t talk loud enough). When he does wear hearing aids people will talk to his sister, but just assume he’s deaf and won’t talk to him. Plus, not much is known about Connexin 26, so we don’t know if his hearing will worsen eventually or not.

There are many pluses, too. The signing we learned for Randy we have taught to his baby brother Peyton and at 1 year of age he now signs 20 signs. We are members of a few online groups and a Deaf/HOH group through the school district, and we met some of the nicest people and compare experiences with. We know that this isn’t the road we expected, but we appreciate everything we have even more and it has made us a closer family.

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