robynyoung_2007's picture
robynyoung_2007

CAPD

Hello.

I am a 13 year old girl that struggles with CAPD... It is a very hard situation and I was wondering if any of you had any advice on it.. My school is new to the disabilite and my school dosent have alot of money ither,,, We have a sound amplified system and that helps some in class but I still dont understand and I still find spelling reading and math hard..What can they be doing for me to help me improve



maryleigh's picture
maryleigh

Hi Robyn,

I have only recently discovered this website and just found your post tonight.  I hope you still are interested in getting some pointers about CAPD.  I have a daughter who just turned 14 in August.  She was diagnosed with CAPD, ADHD, and Autism Spectrum Disorder beginning at age 3.  I have found the biggest problem with CAPD is 1) the general public has never heard of it; and 2) because you are so beautiful on the outside it is hard for people to understand you could be anything but perfect.  Well, who do you know that is perfect?  NO ONE!!!!

I can't tell you how excited I am to have the chance to talk to you about what I have learned.  I have spent the last 10 years learning everything I could about CAPD.  Until last week at a meeting with her school I have never known or spoken with anyone with CAPD.  

I have never joined a forum before so I don't know how it works.  If this is emailed directly to you please let me know.  If you have to check the forum manually I hope you are patient and still interested.

I look forward to hearing from you.

Mary Leigh Meredith

concerned mom's picture
concerned mom

Hi,

I just read your story, and I can tell you a little about my experience w/ processing disorders.  My 4 yr old son has a processing disorder which effects his language, comprehension and social abilities.  He receives speech, OT and PT in school, and has come a long way since he was first diagnosed.  Yet, he still has a long way to go.  Have you ever been diagnosed w/ a learning disability, or have you had any other labels?  Right now, my son is considered developmentally delayed, w/ concerns regarding processing and word finding difficulties.  I also wonder if he's just a slow learner.  Do you have any of these or other issues linked to CAPD?  I've heard about a program called FastForward.  It's a computer program that is specifically designed to help enhance your processing speed and focus.  It's very expensive and requires a lot of your time, but it's worth a try.  I looked into it for my son after hearing positive things, but I was told to wait, b/c he's too young and not very comfortable w/ computers yet.  But for you, it might be worth a shot.  I hope this helps.  Good luck!

Sincerely, concerned mom 

joannmckean's picture
joannmckean

My two boys have CAPD also - along with so many other issues. They appear very normal, but if you saw my older son, he would appear indifferent to you. He was tested a few years ago and it was found that one ear actually reversed the patterns of the incoming signals. Strange, to say the least. I didn't know it was possible. He processes very, very slowly compared to a "normal" person and can be talked to death. He hates talkers, noise, and etc. because he can't keep up with it. He, by the way, has an average or above IQ. He also has to know you are talking TO HIM, or he won't even try to follow the conversation. My younger son has a different type of CAPD problem and it's like we talk a different language. He also is above average in IQ, which I stress because being different has led many people to believe that is the problem. It isn't. I say something to him and it comes back at me in a completely different form...subject matter has changed. If he hears the wrong sounds in a spelling test, he writes the correct word for what he heard, but the wrong word for the test. His information has to be piece-mealed to him as he "chunks" it. He hears some parts and makes up the rest. He has Special Ed. Speech and Language long after articulation cleared up. He processes so differently that I have had to work with him on strategies to get the pieces he misses. Yes, I have heard of it. There are many different ways that this presents itself in any individual. Front end of the phrase droppers. Rear end of the phrase droppers. Sequence Problems - my older son will NEVER be able to alphabetize, use a book dictionary, and finds the telephone book hard to use. You can find good info online.

ziggy's picture
ziggy

Hi Robyn,

It is great you are able to come on the board and talk about your own situation. I haven't been diagnosed with anything but did have learning difficulties in school and didn't receive any help. Kudos to you for asking. :)

I just Googled CAPD and found this website:
http://kidshealth.org/parent/medical/ears/central_auditory.html

There might be some more information for you there.

Is there anyone who might be able to see about getting a government grant for you or more funding? talk to your local government representative? ( a friend of mine talked to their gov rep and got a grant so his wife could have cancer treatment) Maybe you could get funding for an assistant to help you understand your work better? to be able to create a more work friendly environment for you? (e.g. less background noise) Guess I'm not sure exactly what your needs would be but hope this helps a little. ziggy

autumns_mama's picture
autumns_mama

hello i am a mother of a developmentally delayed 3 year old girl.. wondering what you think the outcome is for her or if you have heard of kids coming out of it or is it something they have and have to deal with for life... she didn't sit up alone til 1 didn't crawl til 2 and is just now at three trying to walk... speech isn't where it should be but in her own way she is just so smart.. she was even able to pick up sign launguage...she has therapy thereapy thereapy since she was a year... my biggest question is how did she end up like this... is it something i did or was around... how does this happen.. alot of docs keep asking me if she ever went without oxygen... the only thing i can remember was when she was about 4 days old we put her in the crib and in the middle of the night she had spit up her formula and she choked on it... when we heard her moving around in the crib we instantly ran over to her and she was beat red in the face and sweating.. we called 911 and they got there and got the formula out... could that episode have caused that?? i would really appreciate your input...thanks

2xstepmom's picture
2xstepmom

As the mother of a now 25 y/o daughter who has Nonverbal Learning Disorder and Social Anxiety Disorder, I can relate to your feelings. I too felt a lot of guilt and still sometimes wonder if it was something I did that caused her issues. Many children have some sort of issue. Seldom is it directly the fault of the parent. With the help of a supportive family, most children eventually catch up. My daughter does continue to struggle. She did not have the advantage of early intervention as your daughter has had. At 25, she is like a 16 y/o, socially immature and sometimes easily led. I feel fortunate that she now accepts her issues and takes life slowly. She does not want to have children until she is much older and says possibly never. She relies on her family and close friends to help her when she struggling and takes her meds consistantly. With love and support, your daughter will have the opportunity to have a fulfilling life. Best wishes to you both.

CAPD CODY's picture
CAPD CODY
Hi, I use big words hear and since you mentioned you have trouble reading, you may want to have your parents read this with you. I was diagnosed with CAPD as a kid. It does get easier. First off you are protected by the Americans with disabilities Act. This means your school is responsible for providing reasonable accommodation to you. Enough with the lawyer speak lol. Your parents should be meeting with your teachers to explain your disability to them. Background noise is the worst with CAPD. In my opinion amplification systems arn't great because many distort what is being said. From what I understand about CAPD, your ears hear at normal volume. The link from your ears to brain isn;t the best and will leave out sounds. Simply making everything louder doesn't help. What does help is being closer to the person who is speaking. Sit in the front of your class all the time. If you have assigned seating, make sure your parent speak to your teacher and get you a seat up front.
CAPD CODY's picture
CAPD CODY
Secondly, you need to train your brain to use the information you hear and fill in the blanks with context. This is hard n a fast paced school environment, but when at home you can try this. Before you say what or ask someone to repeat themselves, think about what they said for 5 or 10 seconds. Depending on the severity of your condition, you may be able to pick up most of it. It may take time to remember what you heard and re run it through your head. Concentration on separating words when you hear them. If you work at it, eventually you will be able to fill in the blanks if the person speaks clearly without to much background noise.
CAPD CODY's picture
CAPD CODY
As for spelling, it doesn't get much better in my opinion. With CAPD we will always have trouble sounding out words so out spelling is based on pure memorization. You hear the words differently every time so its pretty hard. Just try to do the best you can memorizing and always use spellcheck. Luckily we are in an electronic age where almost every thing we write has spell check.As for reading, you need to try and work hard on that. Reading will help you understand where hearing has let you down. That being said, as you get older you will memorize words and not need to sound them out. The sounding out is hard for us with CAPD.
CAPD CODY's picture
CAPD CODY
At school also make sure your teachers write down homework assignments and such. With CAPD it is very difficult for you to remember verbal list. This unfortunelty make school difficult since a lot of it is verbal. As you get to highschool and college, you will want to record lectures so you can review them over and over. School does get easier. You do really need to work on trying to fill in the blanks in you head before asking for a repeat. Don't get discouraged if you cant do it right away, but it really helps long term. Ask family to slow down when speaking to you. When I'm talking to people, I am normally hearing 5 seconds behind what they say. Its very difficult to hear what they are saying now while im still processing what they did say, but with practice it gets a lot easier.