Another Hurdle?

Okay, so I got up extra early the other morning, before the troops, and started to summarize the last two weeks at JTC, but never finished. I was trying to say too much at once.

Now I'm back. and while I want (and will) summarize this completely amazing trip as much as possible, I have to write from the heart. Because that's how I write best. Before I give out all these amazing tips and lessons learned, before I write about all the extremely phenomenal life long friendships I've made, before I tell you ALL I've learned, I have to get out what's on my heart.

It was a very hard week for me. I'm going to be very upfront. I know I shouldn't compare my kid. I know I shouldn't me sad for my child when I look at how amazing another child is doing - but guess what? I have. I do. and of course I am SOOOO happy to see these children excelling and speaking. OF COURSE I am!

but in my mommy heart, I also know there's something else going on, and before this trip, had no clue where to turn. my heart hurt and my tears flowed. Because now, I'm getting a clue.

We came to John Tracy hoping for yet another opinion on why Aiden's spoken language seems to be delayed. They (meaning the statistics) say (something like this - not exact numbers, but close), "when your child has a receptive vocabulary of x amount of words, they will start saying their first words. When that receptive vocabulary grows to x amount, they will start putting two and three words together. etc. etc." (I have the statistics at home, so I can't quote them directly). Aiden's receptive vocabulary is HUGE! His expressive vocabulary is HUGE - as long as he is saying the words in isolation or within a two to three word sentence. He is GREAT at repeating and imitating a model, but when he tries to spontaneously put words together, it is a jumbled mess. I've been told, "he's a boy". I've been told, "it's just taking him a bit longer". I've been told, "he says PERFECT blends (i.e. SNake, and TRain, etc) and it will come when it comes". I've been told "he can say a four/five word sentences", yet he's been modeling that specific sentence for months, and it's probably one of a few.

I'm watching kids here, who were implanted a whole year after Aiden, who are answering "W type" questions. I'm watching kids here talk into the microphone each morning and say a pretty damn good, "Good morning friends." When Aiden says it, you can barely understand it because it's all jumbled together ... more like, "goo-orng". seriously. Aiden is a great imitator. He has a HUGE receptive and expressive vocabulary list. Aiden is SO ON cognitively, but again, something's missing.

Last week we had our one hour speech therapy here at JTC (with a cert. AVT). We played "Guess what's in the bag" and showed him the three categories of items. He knows farm animals, food, and clothes categories ... he knows them. Yet, when something was described to him, he could not vocalize what he needed to.

Something is missing. After one particular morning of listening to Aiden speak in class, I met with his SLT, holding back tears. I had just witnessed a situation of Aiden putting multiple words (like 3 to 4) together, spontaneously with a classmate and didn't understand him. Simple words he knew. She asked me what my heart felt, and I told her, I felt something else was going on. She suggested getting him tested for Apraxia. She thought we should get other avenues tested and gave me the tools to find a good center in our area.

BUT ...

It just so happens that at the same time as we're here, that an AG Bell conference was happening in DC and one of Aiden's first AV therapists attended a class about CI kids who are not performing as well as expected. She knew our story. The class talked about these kids being misdiagnosed with Apraxia when in fact, it had to do with their maps. And she found me a local CA resource to provide another opinion.

So, here are our next steps:

• We're calling this audiologist in the San Diego area, who specializes in similar situations to get a second (or truly third) opinion on Aiden's program ... because without the right program, a child will not move forward.
• We're checking out, with the help of Aiden's SLT here at JTC, where we can get him tested for Apraxia or similar disorders in our area.

What does our future possibly look like?

• All depends on the above two factors. The audiologist at JTC believes he has a good map. They say it could be better, but it's good. If we find out that his map is good from yet another third opinion, we have another evaluation on our hands.
• If he tests to have apraxia, we have yet another therapy on our hands. and a therapy that is almost like starting from day one. BUT we will move forward. I will not stop.

I can truly say I'm spent. Of course I will do ANYTHING to get my child the help he needs. I will do ANYTHING to get him there. I'm not ready for this, yet I believe I've known, and have been preparing myself for the next step no matter what it may be. So I have to be there. No matter what the outcome may be. I have to be ready. yet, it tears me up inside.

So my questions to you:

• Do you have a child with CIs and Apraxia (or something similar)?
• What is the therapy like?
• Do you have a child who gets it receptively and cognitively, and somewhat expressively, but couldn't put the words together because of a bad map and finally figured out what the problem was?

I have to find answers. For me, but even more so, for my boy. I will not give up.