Hi Diana,
I'm so sorry to hear the school is using their tactics to keep things in limbo. We went through the same merry-go-round with our school. The fact is, if you have outside tests, they MUST consider those when making a decision. They do not have to make their decision based on them (as we found out the hard way), but they must at least review and take them into consideration. If you have an audiologist who says he has CAPD, and the school's audiologist says differently, you may have to go out and get another assessment done by a third audiologist. Or hire a lawyer. You might consider bringing an advocate to the screening meeting. Do you have funds to afford one? They often charge $75-$150 per hour. But having one right off the bat is a great idea because then you're showing schools you're serious.

You can definitely talk about all these issues in this section (Special Ed and CAPD) on this chat board. The area of the site I'm talking about is an informational area, like the Therapies or Diagnosis sections in the blue bar at the top. Seems to me that special ed is a particular challenge for CAPD, so I wanted to put together some resources to help parents make their case. One of the problems with CAPD is it's not specifically delineated as a learning disability. There is ambiguity over where it lies in the IDEA, or if it lies there or not.

I would just love to hear the concerns parents have faced, or the solutions they have found, in getting special ed services for their child. I know we have had an uphill battle, and I would love to shortcut anybody else's attempts to get their child help. My mom asked me the other day why I built this site if I don't make any money out of it. And that is why... to save somebody else time and heartache in their search for an answer and get help. I cannot tell you the adversity I faced in order to get my son diagnosed. We all need to band together and education the school systems. Our children are faced with a serious learning disability, and somebody has to recognize it, $%$*#!

Thanks,
Bonnie

NOTE FROM ADMINISTRATOR:
I moved a copy of Laurie's post to the Introduction Board so everybody would see it. I've left a copy here so everybody could reply within this thread as well.

Hi, I'm new on this board, and would just love to say how THRILLED I am to find a support group for Auditory Processing (FINALLY!).  My 10 year old son is a 5th grader at a very good elementary school in Atlanta.  After struggling through several years of mediocre grades and report card comments such as "lacks focus", "doesn't participate", "lazy", "has trouble grasping the subject matter", "disorganized" etc., we finally got the school involved.  Long story short, we wasted a lot of time sitting in meetings with no guidance toward where to go or what to do.  There seems to only be one pathway, and that is to call it ADHD.  After a consult with his physician (who was SHOCKED that I hadn't already set up a ritilin assessment appointment with him), I knew there had to be something else going on.  He actually told me that I'd waste a lot of time & money on testing when we could be solving the problem right away with medication.

We now have a new pediatrian.

We finally had a full battery of tests performed and discovered it was Auditory Processing (with working memory defecits) and dysgraphia (difficulty performing handwriting neatly).  Despite getting an IEP in 4th grade, the accommodations were lacking, and the support we received in the co-teaching situation was, lets just say, disinterested.  They decided that he was just lazy.  After spending the summer educating myself on everything I could find on CAPD (which is precious little), I realized that I needed to become his biggest advocate ever.  I'm very happy with the co-teaching arrangement this year, and have gone to great lengths to make them understand the world that he lives in.  Just yesterday, we had our 4th meeting of the school year to continue to tweak strategies and IEP goals.  I plan to touch base with his teachers approx every 2 weeks just for an update.   I've also made it very clear that bullying tactics not only do not help the situation, but are creating a self-esteem problem that makes it impossible for the child to succeed.

I just finished reading the book "Don't you Get It?" and found it to be energizing.  I'd love to hear other people's experiences, and how to approach this subject when the school becomes skeptical.  I'm especially interested in any classroom accommodations and strategies that work for other people, and looking for ideas to help teachers, students, and parents guide their child toward self-advocacy.   

Thanks for a great site!
Laurie

Hi Marianne,
Thanks for your post! I actually administer this board, and I increased the login time so it won't log you out. For security reasons it was logging you out after 15 minutes of no activity. It doesn't see you typing, so it thought you were no longer viewing the site. I increased this to 60 minutes of time. Sometimes I write long posts in Word and copy over when I'm done, that way I won't lose them if I submit and I've been logged out.

I think your idea is a fabulous one! We have passed our point of struggle with the school district, and we live in California, so not sure we'd be a good candidate for your story. I would recommend getting hooked into some special ed lawyers. I'm certain they will know of parents who are struggling. There is a lawyer in Connecticut that I follow in Twitter. She has a great blog and seems really sincere and kind. Here's her website: http://www.connecticutspecialeducationlawyer.com/  She's really active on Twitter, so I'm certain she knows people all over the country.

The crazy thing about CAPD is that it does not fall under the disabilities category, nor does it fall in the learning disabilities category. It's caught in the middle, and these kids are getting lost as a result. Graeme Wadlow is in the UK and he has been instrumental at getting CAPD declared a disability in the UK. You could reach out to him. He posted his contact details in this post: http://capdsupport.org/component/option … ask,topic/

He and I have talked a bit about getting this done here in the USA, but the process would be arduous. It would really have to be done state-to-state before it could be accomplished on a Federal level. I have a husband with kidney disease, and a 4-year-old son besides my 7-year-old with CAPD, plus I work full time to support my family. I'm not the right candidate to take on this project. But if you wanted to do it, I would be happy to support you with building a website to help spread the word. That's what I do for a living (hence the reason I built this site...).

You really have to rely on the mercy of the school district to get your child help. We hired a lawyer, and subsequently fired him, but after that the school became very accommodating. They did not provide any therapies to help our son, but they did give him an aide in the classroom and on the playground, and he got an FM system in school. These both made a huge difference for him. We have done our own therapies. One that has helped a lot is reflex integration therapy, and I believe there is a woman in Florida who provides this. There are only 5 people in the US that do it, so it's hard to find people. Also, the AIT listening therapy made a big difference. Not all therapies help all people, but it's worth a try!

Hope this information helps. Know that you are not alone, and that is why this site is here. While there are not many of us, we need to stick together and support each other through this.

Take care,
Bonnie

Thank You both so much. I will follow up on the websites you provided. I am in the process of retaining a lawyer as I write. I just had another conversation with the school board(I keep telling them to email me for documentation but they won't even though I email them) and the board is just as bad as the school(guess it starts from the top). Did your children get defensive with teachers who do use these "bullying tacticts" whereby the child is labeled the trouble maker and the teacher gets away with behaving this way? The paperwork that I have researched states that kids with CAPD can become very arguementative and disruptive when they feel attacked, especially in middle school. Well, wish me luck. And hope all is well with you.

Marianne

You know, I never thought about it that way. My son is the same as far as telling the truth even when he is so wrong(well too many times he was not wrong he was just doing what comes naturally with this disorder). And I as well have that guilt from past fights with him and a total strain on our relationship that is now healed at home and getting worse at school. It is a double edged sword. If the school knows you are punishing your child when the phone call comes in about some "infraction" at school, they may question if your being too strict with your child( I have had that happen)or they leave you alone but at the cost of a stressful home environment. If you become your child's advocate, and reduce the stress at home and follow the plan the audiologist gives you, your not punishing enough and become labeled. You can't get the help your child needs either way. I am hopefully meeting with an attorney tomorrow. Any advice on that would be great.

Wow,

What a bumpy ride this is going to be. Thanks for all the advice. It just amazes me how things got worse when the 504 plan was complete. Now that I am linked to another website in my county founded by a person with a child with disabilities, I have found that my county is one of the top like 5 counties in the nation with complaints/problems you name it in special education, IEP's, 504, everything. I read some of the actual articles, etc. I don't know if I should feel better or worse. And when I read an example of a common 504, our's is a joke. Very short and what little is there, they are not following and that little bit makes it very difficult for my son and I when he comes home from school and he does not have everything he needs as one example. Anyway, here is hoping this goes in the right direction. I will use your advice when speaking to attorneys. Like you, just because someone will take my case does not meant they are the right candidate. And money for me is a huge issue and what is really sad is that the school knows this. I have to make this work I just wish I could get one good nights sleep.

Hi Marianne,  When the letters CAPD come up, everyone at school seems to nod their head.  But when asked if they can describe the world that my child lives in, things get really quiet.  The reality is, most of them don't know much about APD, and how it affects each child differently.  Everyone at that school that comes in contact with your child should have a cheat-sheet that describes what he needs, and why he needs it, and what happens if he doesn't get it. 

For example:  My child needs written instructions for all assignments. He is so busy processing steps 1 and 2, that he often doesn't hear steps 3 and 4.  If he doesn't have written instructions, his work is incomplete, or gives the indication that he doesn't care about his work, or lacks ambition.

Do this for every accommodation that the child needs.  That way, when teachers say that the child is being lazy or not finishing his work, they can be redirected back to the cheat sheet.

Best of luck with the legal assistance.  Keep us posted.

Great advice. I am going to try the cheat sheets. Thanks so much. Will keep you posted. Now, yesterday, my son came home and one teacher accused him of not turning in a project we did together and spent like three days on. See, he turned it in Friday even though the teacher gave the kids until Monday. He had two students standing right beside him when they all turned it in on Friday. Teacher would not listen. So, once again, had to email, etc. Since he is now labeled, teachers are becoming more and more distant. We will see what happened today. His binder is so neat now my poor son was like, "I turn it in early to prevent this from happening and now the teacher loses it(not the first time with other students)but instead of it being just a normal conversation with my son like"oh, let me check again" since two other students stood right there as he turned it in and I told her this, she told my son "you did not turn it in and don't get credit" very rude like. I am just so tired.