Sunday, July 24, 2011

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.


Kel said...

Many hugs to you, first off, hon! I'm sorry you guys are facing this :( It's no secret that Danny isn't a typical, stellar CI kid, though we don't know exactly what the deal is. He is socially delayed, though cognitively, he is SMART when he asserts himself, and his receptive language shows it. He just doesn't speak, and the rare times he does, it's with very few consonants (and honestly, his vowel production isn't the best). Speech therapy is pretty much speech therapy, we just get lots of it, and we also work on augmentative communication (sign, PECS) to help him bridge and get his thoughts across... That way, he can actually work on producing the sounds without getting frustrated that he isn't getting his meaning across.

I really hope it's a mapping issue, though, and that your third opinion can get it straightened out and he soars!

Herding Grasshoppers said...

Oh Tammy, I've got no answers or practical help, but my heart and prayers are with you.

You have the same great kid you always did, now you just know more. Or, you soon will, yah?

I know it's hard, but you can do this :D


Melanie said...

Oh, Tammy...

Be 100% sure about the MAP first. You have always had issues in the booth with Aiden. Get another opinion for sure. Always suspect technology first!

Much love to you.

Naomi said...

big hugs to you. You're obviously a great mum because you're able to pinpoint the exact issues and you've got a plan to tackle it. Matilda's problem is a little different - her MAP is bad; it keeps stuffing itself up. At first we were getting 2 months out of a MAP and now we aren't even getting a few weeks. She'll drop sounds, and she is also rearranging words.

MB said...

Mari had/has apraxia. I thought it would be a lifelong problem but it turned out so much better than expected.

OT really helped for whatever reason. One hour a week of that plus 1.5 hours of speech in school plus two hours privately per week for about a year. Sucked for me, but the progress she made in that one year was miraculous.

Check out the Kaufman clinic in Detroit. They can do am excellent eval. They are THE experts.

Two years ago we left JTC with a kid who barely spoke. anything intelligible. Now she never shuts up, and has near perfect articulation for her age.

Ben's Mom said...

Sending hugs, Tammy. I know you will do whatever it takes for Aiden, just as you always have. Thinking of you and hoping your questions are answered.

Julia said...

I followed Melanie's link to the report from that talk at the AG Bell Conference, and it was so right on -- and it sounds really relevant here. Sure, there's variation in how kids progress, and lots of kids have slow periods before a sudden uptick -- but if your Mom Gut says there's something else, then there's something else. Sounds like you're moving in the right direction. I'm sorry it's so rough right now.

Amy said...

Tammy, first of all I'm sending you major cyberhugs....I am so sorry you are going through this scary time. You are doing the right thing by trusting your instincts and taking action. When you do get to the bottom of it, and you WILL, it will all come together. Be it apraxia or technology issues you have one damn sweet smart little boy who is AMAZING and he will be fine! I feel your frustration. Just how the hell can we EVER tell if the map is good or not? I hate how we have to wait for something to go wrong with their speech to say "gee, she must have a poor map". I really, really hate it. Wish it were more simple like the audi presses "enter" on the computer and the CI syncs itself perfectly. Ava is not quite up to par either in that her hearing peers seem to talk much better than she does. But for now, I'm going to try and enjoy the summer and wait till September when we start up our sessions with the TOD. Hang in there Tammy. You are doing such a fantastic job. One of the best CI moms out there.

Lesley said...

HI there, we haven't met yet, but I have been reading and following your journey and been inspired by your persistence. My little guy Collin is going through his own journey and delays and I know some of what you said in your post, I have just said to my husband. Thanks for saying it out loud. I wish I had words of advice or something helpful but you have encouraged me tonight. So thanks. lesley

Kat said...

Oh honey, I so love you. Technology first then take on the other things. I've been away from you for only a week and a half and I already want to move to Ohio to be near you guys. Sid is endlessly watching videos from the trip...Thomas keeps asking where are his friends? And, I need a girl to have a glass of wine with. Trust your gut, mamma bear! hugs and love!