Once Again, Thrown For A Loop

With the start of school this past week began A's school-based therapies. Since the school district is closed all summer, the last few months she only had physical therapy and speech therapy--both once a week--at Children's Hospital. This past week we re-started speech therapy, physical therapy, adapted physical education, and a new therapy for us: deaf/hard-of-hearing (DHH) therapy. This new therapy was added in May during her yearly IEP. (We will soon be starting occupational therapy at Children's Hospital, and possibly at school, as well. Can't have enough therapy, can we?)

I should probably give some background on A's hearing loss before I go any further. When she was in the NICU, she failed the newborn hearing screening several times. She was given further tests (the BAER and ASSR tests) and we were informed that she was deaf. As it turns out, she is not deaf, but rather deaf and hard-of-hearing. Her left ear only has a thread of an auditory nerve, so for all intents and purposes she is deaf in her left ear. However, her right ear shows a mild to moderate hearing loss, and with her hearing aid in she has normal hearing in that ear. At least that's what we've been told. I have always been grateful that she has normal hearing in one ear, with that aid in. In fact, odd as this might seem, I never really think about A as being deaf/hard-of-hearing. She seems to hear so well that I usually forget about it!

So yesterday was our first ever DHH therapy session through the school district. Last year, she did have a DHH specialist, but he was only consulting; he would come to her school to observe once a quarter, and that was about it. No therapy. I didn't even KNOW about DHH therapy back then, or I would have requested it. It was brought up during this past IEP in May for the first time, and I jumped on the opportunity to get more help for my daughter. All I knew was that it would help her "listen"....nothing more was told to me.

This particular DHH therapist was highly recommended to me when I took A for a "second opinion" audiological exam in April. They used to work together, and I was assured she is the best in the school district, which is why I requested her. That particular audiological exam upset me very much, and I really appreciated what the testers had to say.

The first thing the DHH therapist did was check her hearing aids to make sure they were working properly (they were). Then she played with A and some Fisher Price Little People, trying to get A to talk. After getting a language sample, she commented on how A is omitting certain words and sounds---all at a certain frequency. She rarely says her "s", "sh" and "ch" sounds, and even in speech she is dropping markers for certain words ("a", for example). I always assumed that she wasn't making certain sounds because of her complicating factors: not only is she hearing impaired, but she also has a paralyzed vocal cord, she had a cleft lip repair which makes her upper lip not as pliable, and the tracheostomy she had didn't let air get to her mouth.

However, the DHH said that when kids drop sounds and words like this, the first thing to be looked at is the hearing aids. She believes that they aren't programmed correctly, and that they need to be turned up in some frequencies (she is basing her opinion not only on experience, but on reading her audiological results and listening to her aids).

This upsets me to no end. You see, A has been followed by an audiologist--who I trust--since she was a few weeks old in the NICU. She gets tested (both aided and non-aided) twice a year. She also had a DHH specialist come once a month when she was in the Early Intervention program, and she had a DHH specialist last year when she aged out of Early Intervention. It's not like I've been living in a cave....we have seen many, many hearing specialists. IF what this therapist is saying is true (and we don't know yet if she's right or wrong) that means for the past four years my baby hasn't been hearing to her potential. She's been hearing well, but not well enough, not as well as she has the capability to hear.

Understandably, I am upset and angry. How can all this be missed over the past four years? However, the therapist assures me it's not too late. If the aids DO need to be adjusted, she is still young enough that her language is still forming. And she has come so far.....her vocabulary, sentence structure, use of pronouns and prepositions....everything has just blossomed this past year, and even more in the past 2 months since she got her breathing tube out. Imagine how much more she'd be doing if her hearing aids were boosted?

So, where do we go from here? The therapist is going to email our audiologist at Children's Hospital this week. If our audiologist thinks the therapist's theory has merit, we'll make an appointment to go in to get the aids reset. And, the therapist might be wrong. We'll find out soon enough. I guess it's not that big a deal, A is hearing just fine. It just galls me to think that she might be able to hear better (and therefore SPEAK better) and no one has told me until now.

This is why it is is important to ALWAYS advocate for your child...and why it's hard sometimes, when you don't know what you don't know.