Our son has always had issues from early in his life. He never had an excessive amount of ear infections, or had any head trauma.  But at about 2, I noticed that he was not communicating like his peers.  In fact, he's never really caught up in speech like most kids his age.  He would say things like "truckskins", and that baffled us for AGES until we went by a construction site and he yelled it.  He was trying to say "construction".  He would use 2-3 word phrases even up until he was in kindergarten like "throw rocks" or "go to park".  He has always been such a sweet and loving child, I never wanted to believe there was anything seriously wrong with him.  After he was tested in kindergarten, and they tried to tell me he was testing "borderline retarded", I was shocked.  I got angry, and scolded them for expecting him to learn things he'd never been exposed to, like coloring within lines, and using scissors (yes, I was paranoid, he never even had safety scissors!) We moved him to a different school district the next year, and he started stuttering.  When we had him tested at the school for this, they told us he was "cluttering", and he went through therapy for that.  After a couple of years, and not seeing any vast improvement in his ability to follow written directions and not understanding us, we had him tested at the University of Kentucky for both learning disabilities and psychological tests.  One said he was just suffering from anxiety, the other said he just had mild fluency issues.  While his speech is still repetitive (he will start a sentence like "I saw a, I saw, I saw a puppy" sometimes, not as much as he used to), we understand now that this pausing in a sentence gives the brain time to think about the context of what he's trying to say, and it is related to the CAPD. 

I had been searching for answers over the summer, when I joined a homeschooling network in my area.  I'd actually considered pulling our son out of the public school system so I could teach him at home, since I noticed that written problems and directions were becoming harder and harder for him.  One day, a woman who is a speech pathologist posted to this homeschooling network, saying she was looking for clients.  I emailed her, and told her about our son's issues.  She asked more pointed questions, like what his behaviors were, and the testing we got done.  Then she told us about CAPD, and Executive Functioning.  I looked into both, and the CAPD information seemed like most of it was written about him!  Our son has never been a poor reader though, nor has he been a discipline problem.  He's the sweetest kid in the world, and the best boy a Mom could ask for.  We got him tested with an audiologist a couple of weeks ago, and even the testing people could see his issues.  We got the results just last week, and it confirmed what I already knew.  His issues are in dichotic listening, sequencing, and auditory memory.  When I read that "for a child with auditory memory problem, there is often no realization that he is missing information", I broke down in tears. After all these years, all the struggles, fights with teachers, and testing we had done we'd finally gotten our answer.  I cried in front of the audiologist, and thanked her emphatically for her help.  You can't know, especially as a mother, what a relief it is until you are in this situation.  Now we can get him the help he's needed all this time, and if he doesn't get it, heads will roll!  Besides, I can home school him if I need to, I know it would work for us. I wish more was known about this disorder, and more attention would be paid in the media about it.

Good luck to all my fellow CAPD parents and kids, our kids deserve to feel like every other child out there.

baberry, our son wasn't tested/diagnosed until just a few months ago, he's 11.  But I know there are audiologists that will test for kids at age 5 and up, you just have to look for them.  Search in your yellow pages and contact your school district.  Ask every audiologist if they test at her age group, and tell them her symptoms.  You will find someone that will be willing to test her.  If there are any colleges/universities that have an audiology or speech therapy program, chances are they have someone who will know what you need.  Don't stop, whatever you do.  The sooner you catch this, the better off your child will be.  Don't let them suffer through years of not understanding why they are different than other kids like we had to with our son.  If I'd have known about CAPD years ago, I would have pushed for the testing and gone anywhere in the world to have it done.  Please, if you need help finding someone, PM me and let me know where you live and I"ll try to help you.

Who does she get speech therapy from?  Ask that therapist if they know anyone who does audiological testing on kids your daughter's age.  Usually the first place you would start would be the school system, finding out who their does their audiological testing.  Second would be your insurance company (if you have one), you'd want to find an audiologist in your network.  If you are paying out of pocket for one, you'll want to try the listings in your local yellow pages or look for one via the internet.  I found one here on this website under online resources... http://www.capdsupport.org/Details/Caro … ogist.html  this audiologist is in Orange County CA.  Click on the link and the phone number will be there.  Otherwise, click on this link for the NIDCD information clearing house, they can help you get what you need.... http://www.nidcd.nih.gov/health/misc/clearinghouse.asp


After all the years of misdiagnosis we went through, I actually considered homeschooling our son.  In fact, the reason I found out about CAPD was through a homeschooling website where a speech language pathologist posted.  If it wouldn't have been for her, I probably would be pulling him out of school and keeping him home.  For now, the school system here is working fine with us, doing what needs to be done.  But they are aware that I have the option to take him out if I think they are doing a poor job of following the 504 paperwork.  We would be using unit studies, and I think he'd be fine at it. 

Keep us updated when you can, and ask for help if you need it.  I know there are wonderful people on this site who would be more than willing to help get you the info you need.



Diana

duranie- thanks so much for your response and advice.

Bonnie- I'm seriously considering getting my daughter tested by Carol Atkins.  Like you, nothing pertaining to speech or CAPD is covered by our insurance.  At this point $600 is a lot of money but definately something to save for in the near future.  Bonnie, if you don't mind me asking, how old was your son when he was tested.  Everything that I've seen so far requires kids to be at least 7 years old for 'accurate' results.  My daughter just turned 6 in August.  Thanks again for the response.

Baberry, our son was 6-1/2 when he was diagnosed. She will diagnose children as young as 5. She said it's dependent on the child being able to cooperate and follow through on the tests. Our son is VERY wiggly, so I think if he could do it, any child can.

My husband took him to the appointment. My husband said before he left she said that James had "some degree of impairment" but she did not want to verbally say exactly what that was. About 2 weeks after his visit she sent us an extensive report where she not only took into consideration her tests, but all tests that related to hear over the previous 6 months (we gave her copies of all assessments). We did not have to go back to get the final results. Her assessment was very thorough and definitive. The school district did not even argue the fact that our son was under 7 (which is why they refused to test him). Her report was so conclusive, they accepted it and we moved right into the accommodations Dr. Atkins suggested.

$600 is a lot of money. You might ask her if she can provide a payment plan. She does do a hearing test as part of her evaluation, so maybe she can bill that separately so your insurance would pay. I would call and talk to her or her assistant. They are both incredibly nice and willing to help. I did not meet Dr. Atkins personally, but my husband said she was incredibly personable and really wanted to help. I think she's frustrated by the schools not testing under the age of 7. Many kids are having negative school patterns ingrained before their APD is discovered.

HTH,
Bonnie

Thanks, Baberry. That's why I created this site and this message board. I was looking for answers just like you, and nobody could give them to me. So after we came out the other end of the tunnel, I wanted to help others coming down the same pike. I don't believe CAPD is as uncommon as it seems. I just think the school systems don't know about it. I hope we get more parents and adults with CAPD on this board so together we can create a resource to make the path a shorter one for those to follow!

I hope Dr. Atkins can help!
Take care,
Bonnie

No, you're not Janny, I thought the same thing for many years until I heard about this condition.  With the invention of the internet, concerned parents can look up almost anything and get answers.  Gotta love it!


Diana

Janny, I can hardly describe the resistance I got when I first told the school this was my son's issue. They basically told me I was crazy and he was ADHD -- put him on meds. But I stuck to my guns! If your gut says it's right, then go with that. Not sure the doctors will be able to provide assessment though. There are not many audiologists who can assess for it, so they may honestly not have somebody to refer you to.

Graeme Wadlow actually maintains the http://apduk.org/ site. He would be the best person to ask about resources in Scotland since he is in England. He has been instrumental in getting CAPD declared a disability in UK. I will ping him on Facebook and let him know you are looking for help. I'm certain he'll respond.

Best regards,
Bonnie

Hi Janny,
I just sent him a message on Facebook with a link to this post. I'm sure he'll stop by here and give you an answer.

I'm not Scottish, but with my name get asked a lot if I am. Kind of always had that connection...

Take care,
Bonnie