| T O P I C R E V I E W |
| jinia |
Posted - Oct 19 2009 : 7:25:32 PM
So I have whined on here before about my son, Kaden and I am going to add one more question..
Kaden was diagnosed last week with CAPD -Intergration/Decoding. This is new to us and I was wondering if anyone is familar with it? I am a research dork so I am reading lots but am interesting in hearing from other parents dealing with it. |
| 9 L A T E S T R E P L I E S (Newest First) |
| Sarahpauline |
Posted - Oct 23 2009 : 2:24:05 PM
I promise you he will outgrow a lot of it and if you still run into school issues consider virtual school rather than straight homeschooling. :) K-12 or Connections academy are free and available in most states. And they give the kids a computer to use for school.
Not all those who wander are lost...
www.SarahPauline.com
www.AbraxasBaroque.com |
| jinia |
Posted - Oct 22 2009 : 6:26:04 PM
Frannie, that is one of the problems I now have - punishment. Kaden - as I blathered on about in another post -is getting into trouble lots for talking and blurting out answers. After talking to the specialist who diagnosed him with CAPD - blurting out answers is what they do. Kaden gets so excited when he has the answer coming out he just doesn't stop it. I have also gotten frustrated with his delayed response time - it is very easy to think that he is ignoring you when in fact he is just trying to "hear" what I said.
Sarah, we have truly considered homeschooling. I have all the necessary documents saved in my favorites just in case. He loves school very much so far now he is still there. I understand about desensitizing with the dirt - we had a water hose issue. We started with spraying the grass, then his toes, my toes, my legs, his legs, ect until now thats one of his favorite things. It has taken until he was 6 to eat cereal with milk. So I hope with time and patience he will "outgrow" some stuff.
Thank yall so much for responding! |
| Sarahpauline |
Posted - Oct 22 2009 : 1:39:47 PM
Frannie what you are describing with being punished for reacting to sensory issues is exactly what I experienced and what prompted us to make the change to home schooling. By the time a teacher would just start to understand my son, it would be time for the next school year to start. My son was so nervous and upset that he was vomiting in school almost daily.
My son always stood off in the periphery, never really jumped in and played, would never walk in grass. It took 6 months of therapy just to get through finger painting without panic and hand washing. We moved onto some acreage, I trained in a job I could do from home to support us and I ignored half of his panic about dirt or imagined injuries and we jumped on the trampoline and rolled in straw and LIVED and got in there and squiched dough in our hands. Now I have a filthy teenager. Ive never been so proud. (my son used to have an ocd component and he would hand wash as a 4 yo. Terrified of meningococcal disease. Yes, as a 4 yo he knew what it was and was terrified and had discussions at length with his pediatrician. He was a weird kid) Ever heard of the listening program? I believe wholeheartedly that it helped my son. Consider that as well.
Not all those who wander are lost...
www.SarahPauline.com
www.AbraxasBaroque.com |
| frannie |
Posted - Oct 21 2009 : 7:21:36 PM
i think sarah's post is a perfect example of what i was trying to say.
in the school setting therapy can be very helpful. if the therapist really understands neurological symptoms.
but the most important thing for every child is just to have a good relationship in the family. i think sometimes therapy can even be counterproductive IF it is interfering with the relationships at home.
i think it was a wise decision, sarah for your child to be home schooled, and honestly i have seen children that i thought that would be the most helpful.
we have several children in our family that have developemental delays that are subtle and as they mature they do get better, and there are times when i think if an adult doesnt understand the childs problems they can cause behavioral problems . these are folks that usually think the solution to neurological problems is a spanking, or discipline or whatever.
jinia, some of the things you mentioned about clothing tags,etc. are once again sensory or neurological problems, and there is the potential for maturation to take care of that. in severe cases we used to recommend some handling techniques because the pain pathways and the pathways that help recognize sensory input are the same at birth and then they split and the sensory discrimination one for soft hard touch, hot cold discrimination etc develop. that is why they tactile stimulation can be painful to a child or uncomfortable when it doesnt seem logical to an adult.
the same type of thing can happen with the sensations in the mouth and the responses there. i think the most important thing is that it isnt behavioral, its neurological, and whenever i saw a child with delays that was happy i knew we were on the right track.
jinia, you and sara were just the kind of moms that we used to enjoy working with so much,,,,and quite honestly that i always learned alot from.
love
frannie in texas
home of "green"crafts,
where no scrap is left behind
(http://abunnystale.wordpress.com/)
www.angeltree.etsy.com |
| Sarahpauline |
Posted - Oct 21 2009 : 5:09:26 PM
Hi Jinia.
I cant speak about your exact situation just because there is such a wide variance in severity and symptomology. I will tell you that there was a time about 7 years ago where my son was diagnosed with CAPD, one diagnosis in a long line of them to include aspergers syndrome, autism, hyperactivity and everything in between. After 4 years and several thousand dollars in physical and occupational therapy I decided to just back off all of it and start homeschooling. Im not suggesting that is the right thing for you but it was the right thing for us. There was also a time when I terrified for my son's future. However at this moment I have an intelligent 13 year old who tested above grade level on all his state tests last year and is completely healthy and not in need of any ancillary services. Theres hope. :)
Oh, one more thing, you mention the tags and seems on the clothing. My son used to say "Mommy my socks are screaming at me!" to tell me that the seam at the toe was uncomfortable. I didnt think I would ever get him in a normal pair of shoes. :)
Not all those who wander are lost...
www.SarahPauline.com
www.AbraxasBaroque.com |
| jinia |
Posted - Oct 21 2009 : 3:37:55 PM
Frannie,
You know I have looked at the book several times - I think I will go get it! As of right now he is only in speech therapy which he has been in since pre-k. Considering a personal sound system - they have them that look like blue tooth thing so considering it. Here is where I sound terrible -Kaden is very social, happy, and has good self esteem - he does have glasses, an inhaler, and going to speech. I am not sure how I feel about him having something else that looks different. About your other questions...
Kaden is pretty interesting with some things. He hugs you alright - right on top of you. He is a texture freak about food- eats nothing soupy, can tell the diffrence in brands right away, doesn't like hot food. Kaden is also terrible about tags and seams in clothes. That being said he has never thrown a fit over any of this - he will just not eat it, or he won't stop fidgeting with clothes. He will take his socks off and just put his shoes back on. When he was a baby I almost had a heart attack because when you picked Kaden up on your hip he never would hold on with his legs AT ALL and Never did either. But he isn't on the autism spectrum - I think it is mostly sensory things. We were able to deal with some things until the all but went away with very patient "praticing". All these things happen over time so you don't really see the whole picture until something makes you. Gotta say he is a cool kid - can't imagine anyone happier. Thanks for listening to my rambling! |
| frannie |
Posted - Oct 20 2009 : 11:54:55 AM
jinia, you are talking to the way too long post queen here. i just kinda get carried away and i love talking to the farmgirls!
i was hoping you would send a post back that really went into the details of kadens problems.
all the therapy techniques you mentioned here sound right. basically to call in as many senses as possible to help stimulate the brain.
does kaden receive occupational or physical therapy or adaptive physical education?
are there any "movements" that he seems attracted to, ie spinning or crawling activities, just as examples.
if you dont have it i would really recommend a book about sensory integration by jean ayers(hope that spelling is right)
here is my other take home message.
if possible find a national and regional organization that is for children with problems similar to kadens. other parents are the best for giving the greatest and newest information on these developmental problems. also, while it is great to start early with therapy, the brain continues to change throughout our lives, but early in our lives it has greater plasticity and the changes are more "dramatic". so in simple terms the therapy will be more effective when the child is young,,,,but there is always room for improvement.
if i was your mom, i would give you a big old hug for fighting to get him back in the Title reading help class. as you know, if he needs the help it shouldnt be dependent on the school and their arbitrary cut off , it is supposed to be based on his needs.
when i worked with children we really wanted the parents to fignt for their childrens needs, because unfortunately the system was sort of set up that way. really didnt make sense but of course it usually goes back to funding.
i will continue to check back and see how things are going for you. i do think there are other moms here who have more experience with this than it do, and i know they could give you some great advice. as with all things medical, biological, etc. it seems that increasingly those with experience figure things out and then medicine finally catches up, at least that is how i have experienced it.
continue to be your sons advocate and the expert on his needs and i am sending a hug your way, and wish you would give him a hug from me as well.
by the way, how is kaden with touch and hugs, does he squirm away, and also does he startle easily? these things and the help with them are all covered in the jean ayers book.
love
frannie in texas
home of "green"crafts,
where no scrap is left behind
(http://abunnystale.wordpress.com/)
www.angeltree.etsy.com |
| jinia |
Posted - Oct 20 2009 : 11:22:00 AM
Frannie,
First, I will send prayers Liam's way. I can't imagine how difficult that is. Reading that reminds me of how lucky we are.
Kaden is 7 and we figured something wasn't quite right when he was 3. His speech was that of a one year old- not vocabulary - but speech. Once he got into speech therapy we noticed that sometimes the word he said back wasn't the word he was given. He had numerous hearing test and ENT checks. All clear. As his speech got better it became apparent that something wasn't right. When I would say something that would require a verbal response there was this delay where he looked off before he would answer - if he would. Sometimes/often he would make an almost random comment or start speaking of something else. Very short attention span when you speak to him but could play with his action figures forever. Then when he started spelling words - that was bad. Phonics (which his school is huge on) means nothing to him. We had to make everything very hands on. Writing in cornmeal, using playdoh to spell, go fish with spelling words. This works but takes time. Found CAPD last year in a book but had to wait till he was 7 for the tests. He is blurting out answers to questions in class and generally talking to much for which he gets into trouble everyday. The intergration aspect of the CAPD apparently has something to do with the fact that although the kid prob knows the answer he cant get it out. The specialist said it's like when it's on the tip of your tongue and that is a very frequent occurence for Kaden. She said Kaden would blurt out any answer if he felt like he could get one out because he would be afraid he would forget. It also means a delay in answering questions so it would require waiting for the answer or going back to him. I am afraid his teacher is not very suited to this issue. Kaden was in Title reading help class last year but this year they said there were 8 children with lower scores who would get the placement first. That wasn't very good at all. After this diagnosis(and many emails) I was able to have him placed back in. I got his IEP moved up November to address all this. I hope I get the support I need without making a big stink. Wow this is way to long...sorry!
Frannie I am originally from Texas - lots of it:Mexia, Athen, Corpus, Junction, and lots of others! I do miss it! |
| frannie |
Posted - Oct 19 2009 : 11:19:28 PM
i dont have experience with this as a parent, but i used to be an occupational therapist, and i think we used to call this auditory discrimination problems.
how old is your son, and what problems do you think are related to the capd?
in general, when i worked with school age children, these children might look like they have behavioral problems, but they are really responding to the input that they are receiving which can run the gamut from unreliable to downright uncomfortable.
with out knowing more about your individual sons problems, i would just say in general if the school is going to assist him or provide some therapy or remediation for this situation, which they are supposed to do, the earlier they find this the better. also it is a neurological problem, more of a "fine tuning" than larger problem, and sometimes maturity and growth in the brain helps, and our childrens brains are still growing and changing and that is why it helps to work with these problems early.
and i guess the last advice i would say is in all my years of working with children and adults with neurological problems, i never had as strong an influence in the situation as the mom and dad . so it is great for you to understand what they are saying about your son, but as his mom, no one else really knows him as well as you do. or really can give him the gifts that you can give him. so these folks that you will come to know who work with your son may be experts on the brain or a certain disability, but they are not an expert on your son,,,you are.
i wish you well with this situation and i hope you will keep us posted here on what you learn about this situation.
my little grandson, liam has verbal apraxia, which in the old days would have been called"mute". he uses sign language and has just the beginning of speech. his problems with speech are neurological. we dont really know what the prognisis for functional speech is for him, but he is 5 and his brain still has time to change and learn and develop, so we pray and he has therapy and we hope for the best for him. his mom, my daughter is a single parent and i think a great mom. from some of your other posts as well you sound like a good mom too jinia. i will keep you and your son in my thoughts and prayers, and please keep us posted on what is going on with him and what you have learned about his diagnosis and treatment.
love
frannie in texas
home of "green"crafts,
where no scrap is left behind
(http://abunnystale.wordpress.com/)
www.angeltree.etsy.com |
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