Welcome Inyego!  Most of us have had problems getting our kids diagnosed one way or another.  I didn't get our son's real diagnosis until just a few months ago.  If it wasn't for a homeschooling Yahoo group, I may not have gotten it done at all!  Our son had been behind in lots of things from the time he was born, mostly speech related.  People kept saying he would grow out of it, or it's just him being a kid.  I knew better.  "Truckskins" was a word we never could figure out, until we went past a construction site and he yelled out "TRUCKSKINS".  He was saying Construction, and that's how he heard the word and repeated it.  When he was in first grade, we moved from one school district to another, and he started to stutter and repeat phrases in his sentences (I want... I want to go... I want to go to the store).  He was then diagnosed with cluttering, a speech related condition.  Even after he was treated for it, I knew that wasn't the only problem.  Thank heavens for that speech pathologist in the homeschool group, she was asking if anyone needed advice on their kids.  At that point, I was ready to pull him out of the public school system and homeschool him.  She's the one that told me about CAPD, and how to test for it.  I"ll be forever greatful to her. 

Have you read "When The Brain Can't Hear" by Teri James Bellis yet?  It's a wonderful book, I highly recommend it.  It's chock full of CAPD info.  Did you know that kids with this can have problems with note taking?  Dividing their attention between hearing, understanding and writing is tough for CAPD kids.  I never knew that!  We had accomodations made for just that issue. 

Scour the information in the site, there are wonderful resources in the "resource" page, and other information that may be useful to you.  Feel free to share your journey in the CAPD world, it's so relieving to know someone else is going through what we are, and can understand my frustration, anger, and sadness.  Hope we see lots of you!


Diana

Hi

APDUK, the organisation I help run have an "Ideas to be Considered Prior to Creating an IEP for an APD" web page at
http://resources.apduk.org/iep_page.htm
or
http://www.infosheets.apduk.org/iep_page.htm (if you have visual processing problems or visual stress)

I hope this helps

best wishes

dolfrog

Diana, could you help me understand how a 504 and an IEP work differently, and how an IEP is pointless for you?  Our kids probably present differently, and require different accommodations, but I think I need to see a bigger picture.  I've read a little bit about the differences and really don't understand them.  Thanks!  Laurie

This where the differences come in the different education systems come in, between countries like UK and the USA and as I understand it between states in the USA.
The best information regarding the USA is best found on the following forums
AuditoryProcessing
http://groups.yahoo.com/group/AuditoryProcessing/
capdinvirginia
http://groups.yahoo.com/group/capdinvirginia/
USA_APD
http://health.groups.yahoo.com/group/USA_APD/
and there is also and IEP forum at yahoo as well
you could also have a look at the archives of
CAPD@LISTSERV.ICORS.ORG
http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?A0=CAPD

I hope this helps

dolfrog

Laurie, he needs extra time and attention with anything that he doesn't understand.  Is there an afterschool program that'll give him one on one time with a teacher than can help him?  Ask his math teacher about it, and tell him/her he needs extra instructions on certain issues.  If this is in an IEP or 504, I think you can bring this up to the principal and get it done whether the math teacher offers it or not.  If your son is having problems, get it addressed, and don't take no for an answer.  Go over his IEP information again, and get the speech language pathologist involved.  Have her look it over, and tell her what his issues are.  Make the school work for you!!!


Diana

He needs more individual attention, even if it means he gets taken to a different room for tests.  The school needs to investigate and find out what the problem for him is.  That's their job, and you need to push them to do it.  My son has issues with auditory memory and "dichotic listening", so it was suggested that he wear earplugs or go to a different room for his tests.  So far, he hasn't needed to, but if it becomes a problem we'll have it done.  We're asking him very pointed questions about his school experience to make sure he's got the best learning environment possible. 

If I had the power of the President, I'd be making it mandatory that all kids have yearly screenings for things like this.  There's no reason why if we spend billions of dollars going to war (we'll never see that money come back!) we can't spent half that much testing our kids for learning problems.  EVERY YEAR, not just when there's a problem.



Diana

Laurie, for sure the school should put in some accommodations for test taking. Our son has dysgraphia, which is common among kids with CAPD, so he writes really slow. He has an accommodation to take oral tests when the written letters are not being tested.

In my travels I have read that kids with CAPD are often fine with math until they hit word problems. Processing all those words at once is a struggle, and if they miss one word they can get the whole problem wrong. I haven't read "When the Brain Can't Hear" but I bet she has accommodations for that.

As for the difference between a 504 and IEP, I agree that the IEP is about goals and such, but there is no end date written into the IEP. Instead, the IEP is reviewed every six months, and they evaluate if he has met his goals, and if so, new goals are set. If not, they are suppose to figure out why and make improvements. Children with one learning disability, like dyslexia, usually get a 504. Children with multiple issues that require therapy usually get an IEP. Our son was speech delayed, so he has speech therapy, he also has dysgraphia, so he has OT. He also has social issues, so he gets one 1/2 hour per week of social skills. He also has great difficulty keeping up in class, so he has a 1:1 aide. But he only has all this because he's been in special ed since he was 3, and he was diagnosed PDD-NOS because he was autistic-like.

If our son were diagnosed today, I doubt he'd have half those services, and certainly not without the fight we put up to get them. I know parents who can't even get past the first marker of an assessment, and they don't have money to pay for a private assessment, so their kids get nothing. It's a tough, tough system, especially for kids whose parents don't have the money and/or time to insist on services.

Diana, while there really isn't one therapy that can cure CAPD, I think some of the therapies can help. Research has shown that Fast ForWord definitely helps, and research has also shown learning a musical instrument most definitely exercises the auditory system. Also, some of the listening therapies, like AIT or Enlisten, help some kids. They don't know what really causes CAPD. I'm really wondering if there might be two versions -- genetic and acquired. Our son is one who is showing positive improvement from these types of therapies, so I wonder if he has an acquired type due to many ear infections as a toddler. There is a theory that ear infections cause temporary muted hearing, and multiple in a row can actually cause hearing loss, and then the auditory system is under stimulated. Our son was found to have a conductive hearing loss this past January, and when he did AIT, the loss was rectified. It wasn't until May he was diagnosed with CAPD, but since he began Fast ForWord we've seen improvement. I'm looking into that primary reflex integration therapy. If that one works like the research says, it could be fabulous!

Graeme, so great to see you posting here! You are years ahead of us in the U.S. I have to figure out a way to do what you've done to get CAPD recognized. It really is crummy all us parents have to fight so hard to help our kids!

Take care everybody!
Bonnie

Now that I re-read this, I remember that IEP and 504 laws vary by state. While there are federal guidelines, each state has an overlay of laws for implementing those guidelines. So you really should check in your state for the laws on this. Do you guys have SELPA where you are? Ours hasn't been really helpful for us, but in some counties here in California they are incredibly beneficial. They are people who work for the state whose purpose it is to guide and counsel parents through the special needs highway.

Diana, our health insurance has covered some of the listening therapies, but it's because they were administered by a psychologist and therefore fell under psychological services. Some insurances cover OT as well, but many do not cover speech.

I heard another theory about CAPD today that it is caused by inadequate sheathing of the synapses around the corpus collosum. I wish there were some more definitive studies about causes because that might help determine therapies that might help.

We had Blue Cross and they were very good about covering speech therapy.  Now that we have Cigna...not so much.  But I do think that therapy helped a little.  We also tried FastForWord.  Its very expensive.  Did it hurt?  no.  Did it help?  a little.  Basically, he finished up 5 out of 6 programs, but the final one (Stellar Stories) stopped him cold.  After he plateaued on that, we pushed it until it was obvious that it wasn't going to help him. 

We're really getting hammered in math this year....equations that require bouncing between short and long term memory and word problems.  We have a wonderful teacher this year who really "gets it".  She's been working hard to figure out where the problem starts, and what to do about it.  He understands the subject matter, but often times calculates the wrong answer (he can't master his multiplication/division facts).  He'll probably get a multiplication chart later this year.  Last week, she cut the test down to 10 questions because she thought that he might have auditory fatigue.  Sure enough, he made a 100 on his weekly test.  She might let him take his tests, go to gym class, then come back and review his test before handing it in.  Next year's middle school is interested in giving him oral tests....I think he'd do very well.  He's also using a highlighter to capture only the relevent information in the equation.  I think it helps.

Finding that really great teacher is about 70 percent of the battle.  We've wasted more time sitting in meetings with everyone shrugging their shoulders.  The information posted on this web site, and the info that dolfrog sent from the UK site really needs to get into the school's hands.  They really don't have a clue what CAPD is, and what to do about it.  And sadly, that means that without that one really great teacher to back the parents, its the parents that have to do all of the advocating.  It just kills me to think about all of the kids who are probably struggling, and were either misdiagnosed, or don't have someone as pushy as me advocating for them. 

In one meeting I finally told them that there must not be an expert in the field in our area, or I would have found them by now.  So, I guess that makes me the expert in the room.  So I asked, before we proceeded, if everyone knew what CAPD was, or what questions they had about it.    That moment was the turning point.  Either no one wanted to argue, or no one was able to support their argument.

Where we are now is lining up a tutor.  I think he would benefit from a little pre-teaching from another of the teachers in the school.  Then maybe when the concept is taught in class, he wouldn't be hearing it for the first time, and might catch on a little faster.

Thank you to everyone who commented on my last messages....I learn something new from this board every time I post something.  You guys are awesome!!

The biggest mistake I ever made was assuming that since we were now "in the system" at school, they would be on top of things and would magically know what changes to make to help him.  SURPRISE!  Not so....its up to the parents to advocate, advocate, advocate.  And the child should be taught to do so too (although mine usually wound up getting in trouble for contradicting the teacher, but that's another story).  Now when they say "There's a problem", my response is to ask them "what are we going to do about it".  I stopped caring a long time ago whether or not the school thought I was a pest.

You stay tough Diana.  It'll pay off in the long run.

Does anyone have any suggestions for how to strengthen short term memory?  We might have to resume therapy for that, but honestly, I didn't really think it helped much.  So much of it was game playing that we could do at home anyway...and save the $70 per half hour (That insurance doesn't cover because its not a medical necessity).

Thanks - Laurie