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capd...thus it begins

Submitted by an LD OnLine user on

Hello to all,I sit here with tears filling my eyes.I heard the term cap for the first time today.At first I was “excited”.It sounded like what might be the answer.Though just last week I didn’t really think there was a problem,yet I think I always knew something was different.I remember very clearly the day my mom & sister suggested I get David checked because he wasn’t talking yet.I cried - how could my child be less than perfect?!Well I now am alot wiser and more experienced,that is why when today the hearing test went well,then his teacher told me about capd I was actually excited to learn more and find out what we had to do.I’ve since read alot of posts and to be honest I am scared more now than ever.I’m sure it’s just the initial shock,but part of me wants to cry because I don’t want my sweet sensitive son to have a learning disorder.He seems to have it hard enough already and now I read that I/we may be in for a long road?Phsycologists ?Why?I’m looking at my 4 year old too,is this hereditary? He has very sensitive ears and just plain does not follow directions well at all.Please someone give me a hint of what is to come and what the doctor may do? What will I be doing for my son?Thanks Melissa

Submitted by Anonymous on Thu, 06/05/2003 - 4:32 AM

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Dear Melissa,

Please know that I feel for you and remember so vividly what it felt like the day I knew for sure that something wasn’t right. I had always suspected, but, it hit so hard when I read all about the diagnosis. My son had been diagnosed dyspraxic. Along the way, I realized that I am probably a little dyspraxic myself— I still play tennis. I also went to college and to law school. I probably have a little ADD too. But, I have a great life, so do my kids. A good friend of mine just told me she was dyslexic. Well, she has a great life: 3 beautiful children, a great career (now on hold), a great husband…. I know it is hard, but I bet you can rise to the challenge.

It is nearly four years later and we are all doing very well. You will cry, but then, you will pick up the pieces and figure out what needs to be done and do it.

On to the practical, I would have him evaluated by a specialist who can screen for CAPD (probably a Speech and Language Therapist), then I would figure out what is the best way to proceed. There are many programs out there. Some very, very worthwhile. Some a little iffy. This is a great place to get the experience of others. Also, I might have him seen by an ENT just to rule out anything physical like adenoids or tonsils.

Once you know for sure what the issues are, it becomes alot easier to figure out where to go.

Please know you have the support of all the wonderful parents on this board.

Margo

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Submitted by Anonymous on Thu, 06/05/2003 - 11:31 AM

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Hi Melissa,

How old is your son who was just diagnosed? If the teacher is the one who said something about APD, have you had a formal diagnosis by a professional audiologist?

Don’t despair. My son is 10, and was diagnosed with APD about the time he turned 9. He has done some therapies, and he is maturing. He is identified as LD in written expression, however he is very smart, mainstreamed, and does exceptionally well in school. The LD diagnosis gets him some support he needs because of his various disorders (APD, NLD, inattentive ADHD, anxiety, visual processing).

Even with a formal diagnosis, your son is the same kid. The diagnosis will simply help you learn how to help him better. Take heart - it’s not as gloomy as it sounds at first.

Lil

Submitted by Anonymous on Thu, 06/05/2003 - 1:24 PM

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Melissa,

Many of us have been in your shoes. Yes, the crying, thinking how could this amazing child have a problem. Try to remember he is the same wonderful child. Many kids walk around with these problems and have parents that are unable to help them.
Think about how lucky he is that he has a mom who will help him get through this challenge.

I would suggest an evaluation with an audiologist who is familiar with programs that can help like tomitis, the listening program, speech therapy and fast forward.

A good audiologist should be able to give you a full assessment and point toward something that will make a difference.

Submitted by Anonymous on Sat, 06/07/2003 - 11:44 PM

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Hi, Melissa,

I am a special education teacher and my 7 year old also has an auditory processing disorder. She receives speech/language therapy and is doing quite well!

To ease your mind and to educate yourself about APD, you need to order two books:

When the Brain Can’t Hear by Teri Bellis

Like Sound Through Water by Karen Foli

There are methods that can help these children succeed. Finding the guidance is not always easy, but it can be done even if you have to do it yourself!

Also check out www.ncapd.org. Parts of the site are not operating, but there is a good list of links on APD and there is also a professional listing of audiologists and speech/language pathologists who specialize in APD.

Janis

Submitted by Anonymous on Tue, 06/10/2003 - 8:58 PM

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Well, Melissa, I had a long post written, but then the program made me log in and it said I couldn’t because someone was using my name, so I had to register using a different name (kind of).

Anyway, I want you to know you are among some very supportive people here who are dealing with the same thing.

My 7 year old daughter was diagnosed with APD in April, but by that time I had done so much research on it that I wasn’t surprised, just relieved that I finally had the “answer”.

We are in our 3rd week of Fast ForWord; there are a lot of good programs available.

Definitely read the two books “When the Brain Can’t Hear” and “Like Sound Through Water”. I just finished them both. They are an excellent source of info about the disorder. (My mom used to tell me that I should write a book about my daughter since we’d been through so much testing and therapies, but now I can’t. Karen Foli wrote it, except she changed my daughter’s name to Ben.) :)

Don’t miss the NCAPD’s website. Hopefully their boards will be working again soon. This is also a wonderful source of information. You may become overwhelmed at first, but use that to make you stronger in your conviction to help your son with his struggles.

The more you learn, the more you can help. It has helped me to be more patient with my daughter when she says “I forget”, “What did you say?”, etc.

You may come across the name of Dr. Jack Katz in your reading. I had not heard of him, but he was a part of my daughter’s evaluation and is a leading force in the field of APD. As he told me, “You are your daugter’s (son’s) only advocate.”

I figure I may be out a few dollars now that I won’t miss several years from now, but I may be making a difference for my daughter that will last her a lifetime.

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