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Hueyhome
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Introduction

Hey, folks!  I just registered on the site, and wanted to introduce myself. 

My name is Monique, and I'm a homeschooling mom to three boys; our middle son, age 8, has CAPD.  At age 3 he was diagnosed with significant (+-1 year) receptive and expressive language delay.  We placed him in private speech therapy, and I started studying up on learning disabilities.  I eventually stumbled across CAPD in some of my reading, started observing him closely, and it became obvious to me that was his underlying challenge.  Our son had every single classic symptom of CAPD according to the article I found by Maxine L. Young.  I brought this to the attention of our son's speech therapist, but she was not very receptive to the information (or my observations), stating that he couldn't be tested until age 7-8.  Well, I wasn't happy with the progress or son was making in speech therapy, and I wasn't willing to wait another four or five years to address the CAPD issue.  So I embarked on a home-grown therapy program that has included several elements.  After 1.5 years of private speech therapy, I didn't feel it was benefitting our son any, so we pulled him out and focused on working with him at home.  I feel he has progressed very well, certainly better off now than he would have been if we had sat on our hands waiting for a formal diagnosis.  He's now at the age he can be formally tested, so I'm debating whether or not to do that. 

So, some approaches we've taken.  We started with intensive auditory bombardment.  We had him use headphones anytime he watched a movie, played a video game, or played on the computer.  I figured having the built-in filtering of the headphones would help him focus on the language sounds, and he had the visual cues to help him figure out context and vocabulary.  For the first year or so, he was using headphones about 3-4 hours per day (it's not as hard as it sounds if your child loves movies and computer games like ours does).  We started him on the Earobics Home Step One program (I think around age 4), with limited success.  Some tasks he could figure out, but some tasks were simply impossible for him.  Over the span of a couple of years, he eventually improved in all of the tasks, and we moved him on to Step 2.  We don't use the programs with compliance requirements but allow him to play as he wants to, and it's a good way for me to judge which areas of his processing have improved, and to what extent, over time.  I'm actually having him run through the programs again, just to be sure he's mastered all of the skills.  I'm pretty sure he uses visual pattern memorization on some of the tasks (he's great with patterns), but most of the skills I'm comfortable he's mastering based on auditory performance alone.

From the visual/headphone combination, we moved him on to simple read-along audiobooks.  He still was not able to follow simple stories with audio alone, so having the pictures and text to follow along allowed him to beef up his vocabulary and grammar.  He LOVED listening to and reading the same books over and over and over.  I burned copies of the CD's we'd borrowed from the library (and later downloaded them onto his iPod) so that after we returned the book, he could still listen to the audio portion.  (We always used the high-quality headphones we bought for TLP).  He got to the point where he would memorize the entire story and tell it back to us word-for-word with sound effects and everything.  Now we've moved him on to audiobooks of chapter books, again reading along with the audio. 

We tried The Listening Program around the same time we started Earobics, but it was really distressing for him, so we dropped it.  After he completes this round with Earobics, I may try him on TLP again to see if his auditory sensitivity has improved enough to tolerate it. 

And, from the beginning, we have read to him and his brothers A LOT.  Even when I knew he was not following the chapter books I was reading aloud to his older brother, I had him sit with us.  He could play with LEGOs or draw or whatever, but I wanted him hearing my voice reading those books, sensing that eventually he would start following the stories.  And, he did.  It was a huge breakthrough when he started actually asking questions about the story and asking what words meant.  Whew!  He's able to read independently (although he doesn't like to) using a combination of sight words and phonics, so I don't think he has any serious decoding issues.  He likes to read aloud to me and to younger children.  And he LOVES being read to.  He's begun asking how to spell words properly, and his basic writing skills (letter formation, spelling, etc.) are progressing.

He has an ear for music, and often picks out and plays back simple pieces of music on the keyboard or piano, especially those his older brother is working on.  He loves Shel Silverstein poems and has memorized several of his favorites.  He memorizes and re-entacts favorite scenes from movies and audiobooks.  I've found that as long as the pace is slowed down a bit from what most of us are accustomed to, he's able to follow language, memorize it, and repeat it.  As far as I can tell, he's got the context and meaning of what he's repeating.

So, that's us in a nutshell.  Kind of a big nutshell (sorry).  I'm glad to find there is more support "out there" for CAPD than there was when we started this five years ago.  And, I'm always glad to chat with others, answer questions, share stories, etc.

Blessings,

Mo


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Mom2Boys
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Re: Introduction

Hi Mo! Welcome to the board! big_smile  I was hoping some more moms would show up here. Sounds like you've been down a similar road to ours. James has also been in speech since just before 3 years old, and when I brought up the possibility of APD, it was ignored or pushed aside. The one I like (not) was the school psychologist who pretended to be empathetic and offered to bring it up in the IEP, then totally shot it down when we got to the IEP. Sorry, I guess I'm angry the path has been such a struggle.

You sound incredibly innovative with what you've done with your son! Wow. A lot of what you've done sounds like it's worked. The audiologist who just diagnosed our son suggested read-along books too. We haven't started that yet. DH (dear husband) will get some this week during their library trip. Do you know of any particularly good ones? Our son will be 7 in October.

Our son did AIT (auditory integration therapy) which is similar to The Listening Program. In AIT there is a practitioner who adjusts the volume & frequency if it is too irritating to the child. That might work better for your son, and then he can move onto The Listening Program. There's no proof AIT works, so you don't really know until you try, but our son had extreme noise sensitivity before AIT, and that went almost entirely away. As a matter of fact, before AIT he hated listening to music (I think it bothered his ears) and now he loves it.

Our son is also great with patterns. Good with puzzles too. I wonder if these kids compensate visually because their auditory system is unreliable.

I'm so glad you posted here. I so hope this board develops into a great support system. There are no other kids in James' school with APD, so I have no other parents who really understand.

Take care,
Bonnie


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

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Hueyhome
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Re: Introduction

Nice to meet you!

Let's see...audiobooks.  If you're looking for early readers, our son LOVES the Minnie & Moo, Henry & Mudge, and Frog & Toad books.  He's been listening to them forever, and has finally moved on to Charlie & The Chocolate Factory, and Charlie & The Great Glass Elevator.  When he finds something he likes, he tends to stick with it for a long, long, long time smile  Our local library has an entire rack of beginning reader books with the CD partnered up in a zipper pouch, and then a separate section with more advanced books/CD's, and then a lot of audiobooks by themselvs.  So, once you find where they are, it should be easy for your son to find things he likes.  I've found our son does not like many of the traditional folk tales (I think there's a series called Rabbit Ears), because they often use professional actors, rather than professional audiobook readers.  You may want to sample some of the audios you get for your son to be sure the speech is clear enough, no accents that may confuse his phoneme awareness, and spoken slowly enough for him to understand.  You can find downloadable audiobooks for free on the internet, but, again, I found the recording quality and speaking quality were not good enough for our son's use.  We also have an account with Audible.com, and they have an entire children's library, though you won't have the book to read along with unless you get it from the library or already have it on hand.  We've really made listening to audiobooks a "family" thing; I listen to books when I don't have time to read them, and our oldest (9) loves listening to the Star Wars audiobooks.  When I first joined, I wasn't sure the membership would be utilized, but we've ended up buying a number of audiobooks in addition to our one-a-month because he and I both wanted an audiobook (or two) during the same month.

I don't envy you having to deal with the school.  If you feel you need some advocacy help, or just some ideas about how to get the school to make the accommodations your son needs, check Yahoo Groups and see if there is a group in your State/area of parents with special needs kids.  Get hooked in with as much support as you can, because it really does help.  Be sure you know exactly what the laws specify in your State in terms of special services in the public school.  I think you probably are already aware that if the school tries to put your son in a corner of a typical classroom setting with one-on-one help, it's probably not going to help him that much.  If he's had sound sensitivities, he's probably also got filtering issues which make it very difficult for him to concentrate and hear.

Okay, I gotta run and finish up dinner.  Feel free to contact me privately if you want to continue chatting:)

Mo
Hueyhome@msn.com


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Mom2Boys
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Re: Introduction

Thanks, Mo. My husband takes my son to the library every week, so I will print what you wrote so he can get him some books.

I've wondering if you've done anything to help your son with social skills. Our son has a lot of challenges due to missed information. He tries so hard, and I don't know how to help him. Do you tell other kids that your son cannot hear well, or do you just teach your son how to compensate?

Thanks!
Bonnie


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

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Hueyhome
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Re: Introduction

Hey, Bonnie,

We've really been in a "different world" with homeschooling.  Our social circle has always consisted of families who were so open and accepting of every child's "quirks", that negotiating the social arena that most families have to negotiate (i.e. school) has not been an issue.  I generally let William negoiate his own relationships, whether with adults or other children, while I'm close by prepared to offer an explanation if necessary.  But, William  has had a HUGE advantage in that he has an older brother (10 in Sept) who looks out for him and mostly includes him in group activities.  William has become a pro at cueing off his brother's visual signals and jumping in.  AND, there are many times when William prefers to be on his own.  It's mostly a balance. 

Way back when, when William was in speech therapy, the office had regular classes dedicated to helping language-challenged kids with social skills.  The kids all got together under the guidance of a speech therapist to learn to negotiate the ins-n-outs of socialization when they were not able to follow all of the subtle verbal cues.  But, you know, I've been corresponding with an adult with APD who says that he's become a pro at reading "body language" and lip-reading, mostly because those were the "work-arounds" that he had to develope.  While it may be more difficult in the early years, I think our kids are going to figure out how to negotiate the social scene in their own way.  Just my humble opinion smile

Please feel free to keep up the conversation.  There don't seem to be many of us out there to share information with....

Blessings,

Mo


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duranie
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Re: Introduction

Hi Mo, glad to finally have time to read your introduction!  You are lucky that you were smart enough to come up with your own strategies in having your son deal with this.  Formal testing still might be a good idea, not only for your own piece of mind, but it might give you insight as to other techniques that might help your son.  What harm could it do having your own suspicions verified?  They are also doing genetic testing for CAPD, to see if it runs in families.  I think it does in our case, my son's biological father had a lot of the same behaviors, and I had trouble explaining things to him.  He died years ago of cancer, and I do not get along with his family, so discussing his history is out of the question.  Please look for these things in family members, and other children, so you might pass on your wisdom to other parents.  It seems like today the only advocate our children have is us!


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dolfrog
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Re: Introduction

Hi Bonnie

just a brief intro.

found out about APD in 1998 when my eldest son was diagnosed.
Started the OldAPD forum 2000
Founded APDUK in 2002.
I was diagnosed as having APD in 2003.
My two eldest sons officially diagnosed as having APD 2004.
My wife was diagnosed as having APD 2008.
And to have the complete set our youngest son is going for his APD assessment/ diagnosis in Jan 2010.

best wishes

dolfrog


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