Tuesday, February 07, 2012
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rac76
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Hello! Just a brief Intro...

Hi everyone!

A quick introduction about myself (I'm originally from New Jersey, but been living in Georgia for 13 years. Love cats and scifi, and have 3 kids.), and my oldest daughter (she's spunky, vibrant, intelligent, etc..).

She is currently 8 years old and has had major speech problems since the beginning. She didn't start talking until she started receiving speech therapy at the age of almost 4 years old. Yes, she made the sounds and babbled, but it was our youngest daughter (whose 18 months younger) that did the talking for her. So she has had an IEP for about 4 years, with the dramatic improvements at the beginning. This "slow" down in improvements is what started worrying me last year while she was in 1st grade. Her SLP said that she may have Apraxia of speech, and that she would test for it. So let's move to this school year (09-10..she's now in 2nd grade and out of Special Ed Reading since I didn't see any improvements with it).  Again, the SLP and I talked about Apraxia, and how I thought the test was taken (this is when I found out it didn't happen). So I took it upon myself to figure out if my daughter has Apraxia or not. Called the doctor for a referral, received the referral, and went to the local children's hospital outpatient facility.

While at the outpatient facility my daughter was at first being tested for Apraxia, but the therapist decided to change it to test for something else. Well, that something else came out to be Auditory Processing Disorder. Received info on it, and a few weeks later received her evaluation on it. Did tell the school about it, and the school's SLP and the therapist did communicate with each other. Well..on Monday, I was told by the school that the therapist could not rule out Apraxia, and made no mention of Auditory Processing Disorder. I spent about an hour on the phone with the school just telling them how frustrated I am with the little progress that I have seen in my daughter, and kept telling them that I was told that she has APD. So on Wednesday, I get to have a face to face meeting with school,  to ask them why they think that my daughter has Apraxia, and if they have actually tested for it. Honestly, I feel stuck, I don't know if the school is correct by their statement, or if I should rely on what the therapist said to me. My husband and I think that she has more of the Auditory Processing Disorder as she doesn't remember things, she's does have some behavioral problems, I always have to repeat myself to her, she has spelling and definitively reading problems (I also think that she is a bit Dyslexic). She's visually intelligent (she's excellent with computers) and I keep telling everyone this, but I don't know if anyone is listening.

Oh..and my daughter has been diagnosed with inner ear problems that I asked about with the school. I was told by the OT that educational OT is much different than medical OT. Since she can hold a pencil and tie her shoes, the school would not see the need to test for it. YET, she does have inner ear problems! I just don't know what to do, none of my friends' children have any type of learning disabilities so it's just hard talking to them about it.

So thanks for reading, hopefully, I didn't go on for too long.


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Mom2Boys
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Re: Hello! Just a brief Intro...

Thank you so much for sharing your story. I'm sure many others here have a similar story. Getting a child diagnosed with CAPD has to be one of the most frustrating experiences I went through with my son. I'm not sure if the schools make it hard because it costs a lot to do the full battery of tests, or they sincerely don't understand what CAPD is. They say it is rare, but my personal opinion is that many kids with ADHD are mis-diagnosed.

My advice to you would be to take this into your own hands. I'm not sure what state you are in, but here in California if you submit a written request for an assessment, the school is required to comply or provide a valid reason not to do it. Since you have concerns about Apraxia and CAPD, and professionals have made mention of both, I'm not certain how the school could deny the assessment. BUT, if you don't put your request into writing, they are not obligated to honor it. Check in your state and see if the law is the same.

If you haven't already done so, get The Mislabled child by Drs. Eide. This book goes through every single learning disability, including CAPD and speech issues. It will give you a much better idea of what your daughter might be struggling with. For me this book was what convinced me my son had CAPD, and I fought 9 months to get him diagnosed.

Also, if there has one thing I've learned in this struggle, it's that mother knows best. Follow your intuition, even if your husband tells you you're wrong (like mine did). You know your daughter, and your hunches about her vestibular issues are most likely true.

I created this website because my process was so darn frustrating, I was hoping I could help other parents. My husband recently had a kidney transplant, so I have been missing from these forums (sorry everybody). But if you need help or assistance or even encouragement, please let me know. Go through the old posts and read some stories. We are here to support each other.

Take care,
Bonnie


Mom of 2 boys: James (6 & CAPD) and Michael (3)

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duranie
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Re: Hello! Just a brief Intro...

We are always a good group to get information from, vent to, and overall just talk to, because we understand what other CAPD parent are going through.  Keep us updated when you can.


Diana


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