our 15 year old was told she has Chiara in oct of last year. She is in her second semester of high school and having problem with certain test and receptive things in certain classes.one of her teachers pulled her aside and told her to focus more but from my research I found out that focusing are concentrating are part of her condition I really need help to understand this. We are meeting with her school Thursday to look at a 504.she all ready can not do a lot in pe we just need help in understanding thank you for any help you can give
Hello, Leapshin
This is a difficult time for you and your daughter, and I'm glad that you and the school are working on adaptations for her.
In the meanwhile, it would be nice if you got a bit more in the way of responses and suggestions here. Perhaps if you asked some questions that were a bit more specific than "any help", people would reach out. How about "What allowances and adaptations has the school made for your son/daughter?" or "Do school counsellors know about Chiari, or am I going to have to bring information with me to the meeting?" I'm sure that you can come up with more questions.
Give it a go and see whether that helps.
Seenie from Moderator Support
Unfortunately, Chiari can affect cognitive function. It does not necessarily affect how bright a person is, but can affect various cognitive processes. I had a neuropsychological evaluation prior to my chiari surgery which indicated a whole lot of areas where my brain was not up to par. It showed in my everyday activities. Everyone is different in terms of how chiari may affect cognitive function. I had another neuropsych eval done 1 year after surgery that indicated I was severely impaired in divided attention tasks - meaning I can only focus on one thing at a time. If there is anything else going on in my environment or plaguing my inner thoughts, I have a really hard time focusing on the task at hard. I can block out external stimuli but I get tired quickly. I also am impaired in an area where I have difficulty coming up with alternative plans if my first one is not successful. I cannot remember what the technical name for that is. In real life it can play out in me appearing to be stubborn when in fact I just can't think of what else to do or have difficulty switching gears. My husband is skeptical that it is a cognitive impairment - just kidding - he is great!
I knew that I had remaining deficits after surgery and I have found it helpful to qualify the areas through testing so that I can have strategies in place to deal with those areas where my brain does not function as well as it did before. I have asked a lot of people what might be typical areas of chiari impairment but have not received any concrete answers. I do not think that they knew.
One of my understandings of Chiari is that it is like a slow motion concussion or brain injury. Removing external stimuli and introducing REAL rest into a persons day can improve their cognitive skills. Sites that talk about what to do with a long-term concussion can be helpful in terms of managing the environment and other strategies. Talking to schools about the similarities to concussion can help the understanding levels as concussions are much more common in the school environment.
Good luck in your journey with Chiari.
PS I do not think that you need to improve your questioning skills as a lot of times we do not even know what questions to ask. Though, if there is something in particular, specificity will help!
I was diagnosed with Chiari when I was in highschool. I live in Latvia. For me the problem was that noone recognised Chiaris impact on me. It was really hard physically. It was difficult to carry around all the books and stuff. I couldn't do pe because of my vision turning to black, being dizzy and tired all the time. So teachers thought I was lazy. One of them told me: "It's all in your head" as if I was imagining it. Here, in Latvia, Chiari diagnosis didn't relieve me from pe. "lucky" for me, one of my eyes was damaged. I can't really see with it. My gp relieved me from pe because of that even though it did not impact my abilities nowhere close to Chiari.
I'm really glad you are reaching out here and meeting with her school! Even if you don't know what to ask for, your explaining to them about her diagnosis will help. I think the most important facts that you should make them aware of are: * symptoms; * surgery sometimes is needed, but generally there is no "cure", * it is a very complicated and serious condition that hasn't beem properly researched. Tell them Chiari affects are similar to concussion(only very long-term), as gabby jazzypants suggested. I've heard multiple times doctors(on youtube) discuss similarities between the two.
Now by the initiatives of many Chiari organizations, more research is being done.
Good luck in your meeting! Best wishes to your daughter!
Kristine
one question is ,how do we help them understand that focus ,concentration is hard for her repetitive reading in a certain amount of time is a make or break point in what she is doing9 to 11 minutes she does fine shorter or longer causes her problems
Have you read the link I sent you earlier, lots here to inform your discussions with her school? Here is is again http://www.chiarisupport.org/page/hints-for-parents
hI tHERE, SORRY TO HEAR YOUR CHILD, WE ALL KNOW THAT CHIARI WILL EFFECT THE CONCENTRATION (MECHANICALL DEFECT ON THE BRAIN) RATHER THAN GIVING INFORMATION WITHOUT FACT, MY OPINION WOULD BE PRINTING OUT FROM THE WEBSITE AS WELL AS GETTING THE MEDICAL STATEMENT FROM HIS SPECIALIST (NS) ABOUT THE CONDITION AND SIDE EFFECT OF CHIARI AND MEET HIS HEAD TEACHER, THAT WAY YOU PROVIDE DISCUSSION WITH CLINICAL BASED FACT. GOOD LUCK
If you haven't already, take a look in this page! It is a list of resources for parents of children with Chiari. A lot of resources about their education. I'm sure you can find helpful info there.
when I go there it says page not found
Its a working link, maybe your browser burped:
http://csfinfo.org/advocacy/parent-connection/
leapschin said:
when I go there it says page not found
Very true concentrating with Chiari is a major issue that each person as to meet in their on way.
I would be willing to imagine your daughter dozes off in class too. At 15 for me, it would have been 1987 and I used to sleep a LOT in class. Unfortunately, I did not get diagnosed with Chiari and Syringomyelia until I was 40 years of age. My parents did take me to the doctor, and the blood work came back normal each and every time. So, nothing was "ever wrong with me". Taking vitals and blood work was basically the extent of checking for my fatigue in school.
If is very fortunate for your daughter that you were able to find this out earlier in her life. I went through hell when I was her age, with detentions, pink slips and even behavior issues and even being falsely accused of smoking cannabis by school staff. I had friends whose parents worked all day, so they would let me go over to their house to sleep. My home life was horrible because after the doctors convinced my parents I was healthy, they started to think I was on drugs and smoking dope too. Why am I telling you all this?
I didn't feel like I had an adult friend in the world at the time. I am so glad modern medicine has made these discoveries and kids, babies and teens do not have to endure the hell I went through. Because of all that, I was not able to pick and choose a good college to attend.
Stay well educated on these matters via the internet, doctors and any reading material you can find and be your daughter's strongest friend and advocate. Encourage her to push herself in school though as she knows what she is capable of and what she can not do. If you think you need to start heading towards a disability direction, (I believe a doctor would have to verify that) than you can get IEP's at the school if she is really struggling bad and get extra help.
One benefit of this, if they had IEPs in reg school, they can usually get extra help in college too. My daughter is receiving extra help at her college now because of it.
Hope this helps.