Jared went in for his formal audiology appointment on Friday. We had to wait until he turned 7 to be seen by an actual ear doctor. (I still have very strong opinions on how horrible I think it is that there's an "age limit" for things like APD or dyslexia, but that's for another post.) I hadn't mentioned it to many folks because I didn't quite know how I felt and wanted to make sure it would really happen. Prior to going, a few people said things like, "What if the doctor says he DOESN'T have APD? Have you thought of that? What if it actually is just ADHD?" or told me stories about how Audiologists really don't "believe" in it, since it's not in the Medical Journal. Another person said, "Wouldn't that be horrible if you found out he actually didn't have APD after all the work you've done for him?"
In my mind, I never thought twice about APD. I've been researching since late 2010 and everything links up with Jared's symptoms. He's been in therapy and we're seeing strides. My biggest fear was that he wouldn't be able to get the formal screening. A lady I know tried to get her son tested a few weeks ago and the doctor found fluid in his ear and wasn't able to test him. Jared was extra sniffly this week, with allergies, so I wasn't sure if it had developed into another ear infection.
The doctor who screened Jared was very nice. It was a long appointment and she talked with us about all our concerns. The first test was for his actual hearing. Of course, he has excellent hearing (how many tests have we had in the past year and a half?) and passed it perfectly. The second test was for hearing/behavioral things, i.e. raise your hand or do what the little voice told you when it was quiet or loud. He did wonderfully on that one too. The third and fourth tests reflected the connection between the hearing and the brain. Guess what? Not good. Two words were quickly spoken into his headphones - one in each ear. He was supposed to repeat both words. He didn't do it a single time. He only said one of them. It was also difficult for him to hear certain words in one ear when there was background noise in the other. The doctor said that, for some reason, his left and right sides of his brain aren't communicating. Sound familiar? She's going to finish up his formal report and send it to Jared's pediatrician, Dr. Champagne, his school, and us.
One thing that she said that really stood out to me and I hope that everyone reading this remembers this ONE THING: For every one month a child, in his developmental years, has an untreated ear infection - it equals a THREE month delay in speech/auditory issues. Jared had so many untreated ear infections because he wouldn't let me know they hurt until they were already double, bloody ear infections. So, in other words, because my kid has a high pain tolerance or stoicism, he was delayed. That makes me so sad. That makes me feel like a crummy mother. I had no idea. Suddenly, many of the results from the formal testing that Dr. Champagne did made sense. She linked it to maturity and growth. It was nice for the Audiologist to link it to the ears. The cycle. The sad cycle.
The Audiologist also recommended an FM System for the classroom and said "it wouldn't hurt to have one in your home, too." When I asked her how much it costs, she said they are $3,000 - $6,000. I haven't yet determined how many cake orders that is, but I'll probably do that after we talk to our insurance provider to make sure that at least part of our summer hearing clinic/audiology/neurology appointments will be covered. If you know of any "D List" celebrities looking to drop $12K on a wedding cake, hook me up. No, seriously, the school doesn't have an FM System, so I'm praying for a generous donor to go that route first.
Our next step? Texas State University for more thorough diagnostic tests. "The premier hearing clinic" is the place where I graduated 16 years ago. We were referred to a specialist up there at the Speech-Language-Hearing Clinic. When I called to make the next appointment, I was told that they won't start scheduling the summer appointments until June 11th, but that he's the 11th on the list, so his 2 hour appointment will definitely be this summer.
One thing that she said that really stood out to me and I hope that everyone reading this remembers this ONE THING: For every one month a child, in his developmental years, has an untreated ear infection - it equals a THREE month delay in speech/auditory issues. Jared had so many untreated ear infections because he wouldn't let me know they hurt until they were already double, bloody ear infections. So, in other words, because my kid has a high pain tolerance or stoicism, he was delayed. That makes me so sad. That makes me feel like a crummy mother. I had no idea. Suddenly, many of the results from the formal testing that Dr. Champagne did made sense. She linked it to maturity and growth. It was nice for the Audiologist to link it to the ears. The cycle. The sad cycle.
The Audiologist also recommended an FM System for the classroom and said "it wouldn't hurt to have one in your home, too." When I asked her how much it costs, she said they are $3,000 - $6,000. I haven't yet determined how many cake orders that is, but I'll probably do that after we talk to our insurance provider to make sure that at least part of our summer hearing clinic/audiology/neurology appointments will be covered. If you know of any "D List" celebrities looking to drop $12K on a wedding cake, hook me up. No, seriously, the school doesn't have an FM System, so I'm praying for a generous donor to go that route first.
Our next step? Texas State University for more thorough diagnostic tests. "The premier hearing clinic" is the place where I graduated 16 years ago. We were referred to a specialist up there at the Speech-Language-Hearing Clinic. When I called to make the next appointment, I was told that they won't start scheduling the summer appointments until June 11th, but that he's the 11th on the list, so his 2 hour appointment will definitely be this summer.
I'm feeling so weird about all this. I had called and talked to folks at the Audiology office AND Texas State when Jared was 5. I was told I couldn't do anything until he turned 7. Here we are. It almost feels like we are at the bottom of another big hill. The Audiologist told me to keep doing what we're doing... getting him cognitive therapy. After Texas State, we will probably be working with a pediatric Nuerologist. I'm sure I'll be calling the same Neurologist I called when he was 5, and not old enough. After that, who knows? We will continue on this APD journey and pray for more answers and assistance.
Break up your unplowed ground; for it is time to seek the Lord. Hosea 10:12b (NIV)
You are NOT a crummy mother!! You're J and Zs biggest advocate!! Just look at all you are doing for them.
ReplyDeleteLoved the post about J's conversation with your friend. I'm glad you had a great day!