If you've ever considered CAPD or ADD, please read this...

[Tiramisu]

I apologize if you've read our story before, but I can't help telling others with the hope it might help another family. There's new stuff here, too, even if you've heard it before, because the positive changes are becoming clearer.

 

Firstly, ADD isn't that much more prevalent than CAPD.

 

Dd showed some of the symptoms of ADD, and if I had followed one teacher's advice, she would have been put on medication unnecessarily. It took until she was 16 to get the right diagnosis, and along the way, we did have a local audiologist screen her for CAPD, say she was fine, and tell us with those symptoms it could only be ADD. Finally, years later, we went to a children's hospital where the audiologists really knew CAPD and we got our answer.

 

The CAPD diagnosis made an immediate, huge difference for dd and our family. Prior to learning she had CAPD, dd couldn't get beyond her own perception what she was hearing. She couldn't conceive of a reality beyond her disordered auditory perception because she didn't know one existed. There was a significant disconnect between her and her surroundings despite being rather strong academically. Now, she's right here, always connected, and asking us when she's not sure of what she's heard. No more zoning out.

 

I knew with a CAPD diagnosis that dd would get the accommodations she needed for college, but I never expected the change I've seen in her daily life. She used to be rather timid, especially in a classroom setting. Now, she is confident and freely participates in group discussions. She knows that by simply positioning herself in a certain way, she will process better. We could have never known this without testing. I'm still amazed everyday at the before and after.

 

If you have any suspicions of CAPD and your child is under 7, you can talk to a SLP. If they are seven or older, go to an audiologist and ask for an evaluation.

 

This is my public service announcement for today. ;)

[Laurie4b]

I apologize if you've read our story before, but I can't help telling others with the hope it might help another family. There's new stuff here, too, even if you've heard it before, because the positive changes are becoming clearer.

 

Firstly, ADD isn't that much more prevalent than CAPD.

 

Dd showed some of the symptoms of ADD, and if I had followed one teacher's advice, she would have been put on medication unnecessarily. It took until she was 16 to get the right diagnosis, and along the way, we did have a local audiologist screen her for CAPD, say she was fine, and tell us with those symptoms it could only be ADD. Finally, years later, we went to a children's hospital where the audiologists really knew CAPD and we got our answer.

 

The CAPD diagnosis made an immediate, huge difference for dd and our family. Prior to learning she had CAPD, dd couldn't get beyond her own perception what she was hearing. She couldn't conceive of a reality beyond her disordered auditory perception because she didn't know one existed. There was a significant disconnect between her and her surroundings despite being rather strong academically. Now, she's right here, always connected, and asking us when she's not sure of what she's heard. No more zoning out.

 

I knew with a CAPD diagnosis that dd would get the accommodations she needed for college, but I never expected the change I've seen in her daily life. She used to be rather timid, especially in a classroom setting. Now, she is confident and freely participates in group discussions. She knows that by simply positioning herself in a certain way, she will process better. We could have never known this without testing. I'm still amazed everyday at the before and after.

 

If you have any suspicions of CAPD and your child is under 7, you can talk to a SLP. If they are seven or older, go to an audiologist and ask for an evaluation.

 

This is my public service announcement for today. ;)

 

Could you link to your story?

[Tiramisu]

Could you link to your story?

 

I've posted about it usually in response to questions on these boards about CAPD or related issues. Now I'm not sure what threads they were.:confused:

 

I'll have to hunt a little.

 

There will eventually be a story on the website of the hospital where dd was evaluated. When that happens, I can send out links.

[rafiki]

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[crazyfordlr]

I'm new here but have a little info to offer re: CAPD. My odd was dx'ed with it in Sept 2010. The school district would only test for speech therapy, for which she never qualified. I got fed up and had her evaluated privately by a certificated Educational Therapist. She did almost all the tests an audiologist would do, but did not have the audiology equipment to do that portion. My dd's hearing has been tested and was fine, so I didn't feel like I needed to have that component. The results were CAPD as a primary dx, but there's also some secondary issues with receptive and expressive language b/c of the CAPD. Clear as mud?

 

Even with all this, the school was unwilling and/or unable to offer us anything other than accommodations like sitting in a certain part of the classroom, reduced homework, etc. These were things we were doing already. So imho the school was doing nothing. This was the fall semester of 4th grade and she was only performing at a 2nd grade level per STAR testing and Accelerated Reader scores. This was when I decided to start homeschooling.

 

We go to private therapy now and I've seen so much improvement! They work on cognitive therapy and remediation utilizing multiple products/procedures - Wilson for reading, Making Math Real, PEP (Perceptual Enrichment Program), as well as techniques the therapist has developed based on her own experiences. We've done Interactive Metronome and I'm considering Vision Therapy as well.

 

I took a few months to decompress and figure out exactly what she did and did not know. Then we did IM March-May. We had a few sessions of PEP in the summer, but then took a break. We started back 2x/wk in Sept and have been doing that since. She is now reading at grade level and is only about 1 semester behind in Math. Spelling and Writing are still way behind, but she's a work in progress.

 

Good luck! It does sound like CAPD could be a good fit (for lack of a better phrase) for your child. Don't give up. Call around and see what can be done. FYI...my insurance covered none of what we've done even though our ped has jumped thru every hoop for us.

[Tokyomarie]

The results were CAPD as a primary dx, but there's also some secondary issues with receptive and expressive language b/c of the CAPD. Clear as mud?

 

I believe my daughter's receptive/expressive language delay was due to CAPD. Officially, the SLP said yes, the audiologist said no. After we had spent years on language remediation, her language skills were commensurate with her tested non-verbal cognitive ability. At that point, the remaining CAPD symptoms were (& still are) not being able to hear the speaker in the presence of background noise, and generally not being able to interpret degraded speech signals, such as may happen on TV shows, such that closed caption/subtitles are preferred.

 

For the first 9.5yrs of her life, she wasn't just "absorbing" speech from the environment because her brain couldn't separate the important speech signals from the "noise." Only targeted language therapy (professional & homebrewed) in a quiet environment allowed her to make up the language learning that she had missed due to the CAPD.

[Tiramisu]

Talk to me some more here. Two of my kids are suspected of having CAPD.

 

My middle son is 10, has had ST through the local school district, mainly for vocalic R's and had no improvement. He saw an otolaryngologist who said his hearing is normal and structurally his canals are short, combined with his food allergies, the "echo" ds complains of hearing is due do congestion and should improve with medicine and as he grows, thus the canals lengthen. So we do allergy medication. He still hears an echo, has trouble hearing people on the phone, and struggles with blocking out background noise. I bought Earobics 2 for him and he did fine with all but the hippo section which focuses on vowel discrimination. He's stuck at the beginner level of that. He's had VT and a full NP. He's 2E, gifted IQ, but struggles with reading, spelling, and reading comprehension. He's just into the average range with lots and lots of one on one work and attempted remediation. He wears headsets the cover his entire ear and even with those he's quite picky as many had background noise he could hear. I ran his NP report by the LDA who thought the auditory working memory was hanging him up. We've worked on that and he does beautifully with what he reads, but struggles with what he hears. I ran the NP report by my youngest SLP who said she thinks he has a CAPD. I went to our doctor for a script to be evaluated, but there is a 3 YEAR wait and they are not adding anyone to the list. I've been trying to get help for him for the past five years since he could express to me that he hears this "echo".

 

The bolded sections above are all things I've read about as being issues with CAPD.

 

 

Now my youngest, had a NP evaluation at 7, he was ~ 2 years behind developmentally, dx ASD/PDD-NOS. He's now 8. He did fine with all of Earobics 1 and completed the program. He was fully evaluated by the SLP and she said he had MERLD and likely CAPD. He has frequent ear infections, but that's just been in the last few years, not his entire childhood. He goes the the otolaryngologist next week to be evaluated for tubes. He hates talking on the phone and refuses to wear headsets. His hearing seems fine, but he is very ADHD so you do have to make sure you have his attention first. I do plan to ask at that appointment about a CAPD. I'm just not sure where to go at this point.

 

Since your son is developmentally behind, his auditory system *may not* be mature enough for a CAPD evaluation. I'm really not an expert on this, though. Usually, kids have to be seven. It *may* actually be helpful to wait for his auditory system to mature a little. In the meanwhile, the speech therapist is your best resource, I would think, and she can guide you.

 

This is terrible, but the hospital where dd was dx'ed will not do a CAPD evaluation on a child who has an ADHD or ASD dx. I don't know why exactly, but I think it's because they are afraid the results will be unreliable. This really irks me, because a kid can have ADHD and CAPD and could benefit from remediation. A kid could have also been misdiagnosed with ADD, when it was CAPD all along. Or, a long shot but not out of the realm of possibility, there could also be a misdiagnosis of a spectrum disorder. There's a book called something like Like Sound Through Water, which is a mother's account of her journey is getting her son diagnosed with CAPD, that tells how teachers or other specialists suggested her son had autism. Scary, isn't it? Because of this, personally, as a parent, I would possibly decide what information to share initially if there's a chance a misdiagnosis could influence an accurate assessment of the need for a CAPD evaluation. KWIM? If there is autism, I've read that the "global" aspect of it will show up in the CAPD testing results and it would be clear that it's more than just CAPD. The same may be true of ADHD.

 

May I also ask how having an official dx has helped? Is there any treatment or does it simply qualify them for accommodations and you can relax because you know what is going on? How would I go about finding a good CAPD evaluator who does not have a 3 year wait? I thought 5 months was bad for the NP, geesh! Does any of the above sound like an CAPD to you? Would you have both checked at the same time? I was concerned with having my youngest evaluated too soon with his developmental age being a bit behind.

 

The biggest change with the dx has really been in dd herself. The knowledge that she has CAPD and the simple adjustments that she has made in how she listens have made an amazing difference. Of course, she's not a little one and her maturity makes a difference.

 

There is treatment as other posters have mentioned, but my dd has a type of CAPD which has not been shown to be helped by FastForward or Earobics, but then she has no obvious language problems. The audiologist recommended dd listen to audiobooks everyday, participate in musical activities, and play games like BopIt and Simon, as well as do some interhemispheric language exercises. Dd was my first so she listened to Mozart everyday as a baby (Haha. We're lucky she wasn't number three or four!) and plays instruments and sings. We also have always done read alouds on a nightly basis in her younger years and now she listens to audiobooks on her own. I think she's in much better shape because of these activities than she would have been otherwise.

 

Three years?!! Yikes!! If you want to let me know where you're located by pm, I could ask our audiologist if she knows of places near you. The hospital where my dd was diagnosed has a research department so they must have knowledge of good places in other areas. You could also search the scientific literature and see which institutions the people who are writing the articles are connected with and if any are nearby. It is possible to get the evaluation done in one day so it could be worth travelling if it's a one time thing.

 

 

Hope this helps. :grouphug: