Gifted Issues Discussion homepage Forums Twice Exceptional Updated again: no CAPD

What is the FM system? Do most schools have this? DD is just in elementary in a Title 1 school. Her class has only 18 kids, so is not too big.

Do you see a fancy audiologist or will just about any audiologist be able to diagnose this? DD has a history with an audiologist back from when she had ear tubes and hearing loss as a toddler. I could just call them up and get started with this, but it will cost us, since we have a high specialist deductible. Again, just wondering whether private doctors or school people are better here--maybe the school prefers "their" people? (Sheesh, I am so clueless about this 2E thing!)

We took our son to a specialized audiologist who had a PhD also to do detailed CAPD testing. It was in the soundproof room and it cost $1500. CAPD testing is difficult to do, and only a few specialized people are trained to do it (this is what I've learned). However, it was really worth it for us since my son is extremely verbal (WISC verbal IQ 144) but he has CAPD. It got him the IEP. The school did their testing for CAPD by reading him a story in a quiet carpeted room while the speech therapist clapped her hands! She said he didn't have CAPD.
An FM system is a device where the teacher wears a microphone and it transmits her voice wirelessly into my son's hearing aid. Or it can transmit to a small speaker on the child's desk. We get this free through the IEP. The school district buys it for him (it costs $1000 or so).
His school also has a Surround Sound in every room, unrelated to the IEP. The teacher wears a microphone and it transmits her voice a bit louder into an overhead speaker in each classroom.
For him, we finally figured out that the combination of the FM, hearing aid, and Surround Sound was too much amplication. He said sometimes the teacher wore her keys around her neck and he heard it clanking against the microphone!
I do think music lessons has helped retrain his brain- is that something you can try? He had lots and lots of ear infections as a baby, which is also how he became deaf in one ear (despite 4 surgeries to help all of that, grrrrr)

Oh yikes, $1500. Oh double yikes, "reading him a story in a quiet carpeted room while the speech therapist clapped her hands!" Yeah, DD's verbal IQ is around 140 or so.

UM, we aren't dealing with CAPD, but fwiw we have a friend who's dd has hearing loss and her teachers use the FM system in her classrooms. When you're advocating for your dd, if you have a documented need for something like an FM system, the school can't tell you they can't provide it because they don't have it at your dd's school - chances are good there is an FM system available in your school *district* and the school can get one and should be responsible for also training your dd's teachers how to use it.

The thing we've found is key in advocating for our 2e ds is being able to prove their is a need, and that the accommodation we're requesting is a typical accommodation for that special need (from what little I know about hearing, my understanding is the FM system is a typical accommodation). There are two routes to proving your child needs the accommodation - private professionals vs school testing. Sadly many of us have had the experience of school staff not offering up the correct set of tests, and also sometimes having a bias to show that kids don't need services or accommodations. That's why it's often helpful to have a private evaluation - the evaluation is almost always more thorough, you know the professional who is evaluating your child has the credentials that are needed depending on the child's challenges, and with a private professional you have a chance to ask questions that are relevant without worrying about bias influencing their answers. I apologize to any list members who are school staff who are reading this and think I am biased against school staff - I am not, really not. That's just been our very honest experience in our one school district, and it's an experience shared by friends of mine in other districts.

If you need to start with the school for an eval because you can't afford a private eval, absolutely start there. The school district is supposed to provide the evaluation, and you can request up front the type of testing your child needs. The school can state in return that your child doesn't need that testing, but they have to have a valid reason to disagree with your request.

One thing that really *really* helped us tremendously in advocating for our ds was having an advocate we could bounce questions off of - not just technical questions, but questions about our local school. For instance, if we were you, I could call up my advocate and ask for her honest opinion re would the school do an adequate series of tests, or would they try to get by with a bare minimum or try to fight our request for accommodations etc. Our advocate was able to advise on things like that, and then in turn give us the language we needed *locally* to make successful requests of the school.

Hang in there,

polarbear

Ultramarina, your daughter has enough symptoms of CAPD to make it worth investigating further. She is managing well--but what if life could be so much easier and less confusing?! Also, I agree with DMA that children with CAPD often have anxiety.

We just went through a CAPD diagnosis. The steps were:

1. See a local audiologist to rule out hearing loss. A standard hearing test should be covered by your insurance. Your local audiologist can give a regular hearing test (sorry, I don't remember if you said you'd done this recently). CAPD and hearing loss can present similarly in some ways, so it is important to rule out hearing loss. The Drs. Eide recommended this step (I think in the chapter "What? Huh? Auditory Problems in Children" in their book The Mislabeled Child). If the neighborhood audiologist rules out hearing loss, proceed to next step.

2. Get an assessment for Auditory Processing Disorder. This is a relatively new field and only some specialists will be able to do this testing. We paid about $600 for a comprehensive assessment. It was about 1.5 hours of testing (and then we met with the doctor for another 1-2 hours), so the whole thing took a morning. You may be lucky enough to live near such a specialist.

The results were incredibly helpful for us. There is a lot that can be done to make life less frustrating for the kid (and the whole family)!

One result of a CAPD diagnosis would be specific accommodations in school. These may include where your DD sits in the room, an FM system, and/or taking tests in a quiet environment.

Sorry, I don't know about school testing.

Good luck!

We have a large research university hospital near us that says they offer CAPD testing. Is there anything in particular I should be looking for?

They should do the CAPD testing in the soundproof room. For my son, they did things to look for a temporal processing disorder. So in the soundproof room, he wore headphones and they would present words or a series of clicks separate in time, and he had to respond to them. That was a small part of the test.
Shockingly to me, he did very poorly. He is both hearing impaired and has CAPD.
Hearing well is so vital for children. So far, this year has started off great for my son- maybe because his hearing aid is turned up louder and the extraneous noise (via the FM system) is quieter. He seems to be hearing better.
You would likely need to do private testing to see if your daughter has CAPD, to get those accommodations. Once we did that, we have easily gotten the IEP, and it's been a great experience/helpful for us.

You are lucky to have a local option!

I would want to find an audiologist with some experience with CAPD. Would you be seeing an audiologist with several years of experience, or someone in training/very new to the field?

I would also ask others in your area who have visited this center. Were they happy with their experience? Did the results make sense to them? Did they get a useful written report with recommendations for the parents and school?

Also, a list of audiologists diagnosing CAPD can be found at CAPD-US: http://www.capdsupport.org/Details/102.html Not familiar with this org but this may be one place to start. A few of the places we looked at were indeed on this list. Is the local audiologist listed here? Anyone else on this list local with whom you could compare the teaching hospital?

If you want to know where we went and why, you can PM me.

I talked some more with DD today about her experiences listening and hearing. She expressed that she did not want to take another hearing test (she recently passed one at the ped, but it was a weird experience with a confused nurse who said "This equipment is new and I don't know if it's working right"....DD also seemed confused). Whe I asked why, she said that it's "too hard" and that she can "never tell which sound the ear is in." I thought this was very interesting! Would that be a CAPD thing?

This is my son to a tee... except for the diagnosis.

We had a CAPD assessment at the audiology department of our local hospital. This after DS8 had FIVE normal hearing tests. The assessment was conducted in a soundproof room, took about 2.5 hours, done over two sessions. Because our pediatrician referred us, it was covered by our medical (we're in BC, Canada).

DS8 is SUCH a "huh?" kid... I was SHOCKED AND STUNNED when he passed each segment of the assessment (he was either at or above age level - one section he tested well above age level). He has all the behavior red flags for CAPD as well as having a diagnosis of a language processing disorder (the linguistic portion of CAPD). I'm still shaking my head.

The audiologist said that they can have audio processing delays, and he may be outgrowing his which is why he tested so well. Either that or somehow he's compensating (but how?). Don't know.

In our school district a formal diagnosis of CAPD gets funding to pay for an FM system (so much for that! sigh). Our school principal said that if DS8 didn't get the CAPD qualifying diagnosis that I could pay for the equipment myself if his teacher is willing to use it. I don't know who is grade 3 teacher will be yet and I haven't looked into the costs of the equipment, so that's not in the works at the moment.