Chiari Online Support Group

Learning disabilities and chiari


#1

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I have a question on learning disabilities. My son has a lot ranging from processing what he reads to teachers lectures and everything else to memory loss,etc... Has anybody else gone through this with their children or themselves?? I need to know because for years now I am having so much trouble with my school district with getting the right help for Craig.. The last meeting in Dec. the Principle stated "well there doesn't look to be anything wrong with Craig," I need to know what I can tell them so they can believe this is a REAL illness!!! His new meeting is set for 1/22/13 Thanks, Craigs Mom


#2

thanks, some applies to Craig. but Craig can't process anything he reads, he has no memory of it and even studying does not help. He has gotten worse since more symptoms are appearing. But thanks for taking the time to tell me!!!!


#3

Has he been evaluated by a licensed psychologist? I would get independent testing done if you can't get any help at the school level.

That's a shame, I hope he is able to be on the right track soon. How frustrating.


#4

yes, he has an IEP but most if not all the teachers do not follow it. They think Craig is just pulling their leg. This year he is failing just about every subject. We had a team meeting with all the teachers where the Principal stated "Well there dosn't look like there is anything wrong with Craig, we just feel he is not trying hard enough" Well my jaw dropped to the floor and right there I realized what a fight I have on my hands. But this has been the way since 4th grade since he received his IEP every year before that was an absolut struggle with him not learning anything and hardly able to write, etc. .He has been evaluated by a pyschologist a couple of times but it needs to be updated and I have insisted numerous times this be done but now the excuse is they want to wait till after surgery.

thanks for all the advice, and I need to hear everyones opinions its a lot of help!!!

Debbie


#5

Dont know how much this will help but my son has problems especially in math and science. He is in the 12 grade for the 2nd time which is mostly my fault because I held him back since the school wouldnt . While he is not Chiarian he is adhd and something else we cant get dx because the school refuses to help. He has past all of his state testing so they pretty much passed him along.and claim he doesnt need testing he's just lazy or has no study skill. The boy can fail an open book test. But since he has passed the miminium state requirements they get thier money and he grduates as long as they pass him thur. Its sad but the schools and alot of the teachers just dont care. Read the district policies very carefully and all state policies that apply and bully your way thru it No matter his condition if they're not helping him get an education ( thier job on your dollar ) then make them do it.The louder you are the more they will do to appease you. There are also several student advocate groups for children with learning disabilities and they can usually make things happen


#6

When was your son diagnosed and has he had surgery?


#7

thankyou!!!!


#8

he was diagnosed about 5 years ago. surgery is in the next month or so

pdrum said:

When was your son diagnosed and has he had surgery?


#9

I was diagnosed with LD as a kid - still can’t spell my way out of a paper bag, and I have the penmanship of a 2nd grader.
Fast forward to present… I’m a graduate student and school psychologist intern, aka the person who generally handles this sort of thing in schools. What steps have been taken at school? 504? IEP? I cannot speak for any proven link between CM and LD, but can say that it’s reasonable to assume there could be a connection. However, memory and processing issues could only be diagnoosed with professional testing.
My suggestion is that you bring as much medical documentation of his CM to the meeting as possible. I’d be surprised if you couldn’t get a 504 plan (if you don’t already have one), since its a documented medical disability. This could at least get your son stuff like modified assignments, preferential seating and a copy of the lecture notes. Or are you seeking more intensive help? In which case, you’d need to look into special education and/or IEP.


#10

So, after reading the other posts a little more thoroughly on a computer as opposed to my phone...

His teachers legally have to follow the IEP. Period. If they are not, then you need to remind those teachers and school admin that an IEP is a legal document that must be followed, in order to be in compliance with the law. As a psychologist, I've seen this sort of thing happen before, teachers will have all sorts of excuses when it comes to IEPs. Dealing with teachers of older children who have LDs can be a struggle, since these teachers see a lot of kids each day who are just not trying, so it's easy for them to make that assumption about anyone who is struggling. However, I actually agree with their decision to wait until after his surgery to reassess him - reassessment will not solve the problem, since while assessment can sometimes provide insight into the student's learning profile, the main point of assessment is to decide whether he qualifies for special education or not, which he already does.

Unfortunately, memory problems are not usually considered a processing disorder, but I am wondering if it's more of a reading comprehension problem? Does he remember what he hears? What he sees? What have past psychoeducational reports said? Also, memory problems are often just a result of attention problems - you can't remember what you didn't pay attention to in the first place.

Anyway, my professional advice would be to (if you're not already doing these things):

- Bring medical documentation. Schools (and the SpEd system) are becoming more and more bureaucratic, and need written proof of just about everything before they're likely to get off their fannies and do something about a problem. If you've got something from the doctor that documents his symptoms, that would be excellent. Schools rarely question a doctor's expertise.

- Continue to be an advocate, and make allies in the school. The best one is often your student's case manager (usually their resource specialist). Keep in contact with all your son's teachers. You may have to play the role of an educator yourself, when it comes to your son's relatively rare, and little known medical condition. Just beware of coming off as a "nag," otherwise they'll ignore you even more. To avoid the nag label: when contacting a teacher, make sure that you always explicitly state why you are contacting them and what you hope to accomplish by doing so. Also, the way you word things can also help: include words like "team," "partnership" and "collaboration." Emphasize that you are all working together for the same goal of helping your son learn.

- Your son needs to be his own advocate, and to take full advantage of the services he receives. This can be very difficult, especially with older children/teenagers who are often embarrassed about SpEd accommodations. That fierce independent streak that so defines growing up usually gets in the way of asking for and accepting help. If that's the case, have a discussion with him about how it takes a big man to ask for help, and that it shows tremendous maturity, compared to sitting back and waiting for other people to take care of you.

- Try to focus on your son's strengths. In both my personal and professional experience, strengths are usually the key to conquering LD's, because they can be used to compensate for problems in other areas. For example, a student with memory problems might be terrible at remembering what they read, but better at remembering what they hear - in which case having them read out-loud to themselves, or acquiring audiobooks can help tremendously. Or a student might have a lot of academic problems, but have great social/friend-making skills, in which case, setting them up with a study-buddy can be helpful.

-If they're not following his IEP, then you need to call them on it. Remind them of their legal obligation. If they still don't listen, there is the somewhat extreme measure of mentioning that you can take them to court if they don't comply with special education law. However, don't threaten to sue unless you absolutely have to, because while it will make them take you seriously, it may get you labeled as one of those "evil crazy moms," and in the long run, could hurt your partnership with the school staff.

I'll check the forum again later, if you have any more specific questions.

Best of luck!

DW

3rd Year School Psychologist Intern


#11

Wow !! Thankyou so very much for the time and input in Craigs situation. The advice means alot to me!!

Debbie;)


#12

Thankyou so very much for the advice. I go tomorrow to the meeting and always feel sick to my stomach to go through again. (last meeting I broke down & cried like a baby) But,Yes he has an IEP with everything you mentioned and more. (had to hire Lawyers a few years back) But it's getting the teachers to follow it and keep up with it. They do it for 1-2 weeks after I complain then go back to just yelling at himand not following the IEP again. Iguess it is whats easier for them. Anyway,I noticed his learning start to decline in nursery school and it keps getting worse. The surgeon feels the Chiari is a main reason but he can't say for sure. Craig does have documented processing and memory issues from a neuropsych.Two different times but is due for new testing. I am trying to have him tested again with the school paying (Ipaid for all the other ones) this time but they want to wait till after surgery and let him suffer in the meantime. Thanks so much, Debbie

Legolady said:

I was diagnosed with LD as a kid - still can't spell my way out of a paper bag, and I have the penmanship of a 2nd grader.
Fast forward to present... I'm a graduate student and school psychologist intern, aka the person who generally handles this sort of thing in schools. What steps have been taken at school? 504? IEP? I cannot speak for any proven link between CM and LD, but can say that it's reasonable to assume there could be a connection. However, memory and processing issues could only be diagnoosed with professional testing.
My suggestion is that you bring as much medical documentation of his CM to the meeting as possible. I'd be surprised if you couldn't get a 504 plan (if you don't already have one), since its a documented medical disability. This could at least get your son stuff like modified assignments, preferential seating and a copy of the lecture notes. Or are you seeking more intensive help? In which case, you'd need to look into special education and/or IEP.

#13

Yes to legolady....my daughters ND recommended a complete neuropsych evaluation before my daughters surgery, and we plan to follow up about a year after to compare scores for any signs of improvement. She had low scores in memory and comprehension. She was just recently put on a 504 for some modifications. So my suggestion would to also have that testing done, and even print all of the above post so that they see this is a real illness, that many have and will go through. With the work being done on Chiari Awareness, I have a feeling that the schools will be dealing with this a lot more in the future, Good Luck!


#14

Thankyou!!! I am going to bring up what you said to compare the two scores. That is excellent! WOW!! Debbie

pammyg said:

Yes to legolady....my daughters ND recommended a complete neuropsych evaluation before my daughters surgery, and we plan to follow up about a year after to compare scores for any signs of improvement. She had low scores in memory and comprehension. She was just recently put on a 504 for some modifications. So my suggestion would to also have that testing done, and even print all of the above post so that they see this is a real illness, that many have and will go through. With the work being done on Chiari Awareness, I have a feeling that the schools will be dealing with this a lot more in the future, Good Luck!


#15

Was reading your post about ld and your childs difficulty at school. It seems you have been pointed in the right direction as far as the testings and rights to help for him in school. Until you have all of the results in place thought this link may be helpful for you particulary the piece I have pasted in bold.

Since about 4th grade I had a nagging sense mychild was struggling. She would understand a word she read at the top of a page and struggle with the same word at the end of the page. For her all of her decoding assignments were near the failing level. Had her tested and ultimately diagnosis of Irlens for words jumping around on the page. A tutor with 23 years teaching told me she was an enigma. The irlens aids colored lens magnifying bar over sentences became ineffective by 6th grade when the real battle began and symptoms progressed.

I too fought a needless uphill battle for my child at her school. It is a sad day when parents must become educators to the educators and place in a ring to spar it out. Which turned out to be the case for us. One teacher imparticular led this crusade that my child was lazy I was lax in parenting and the problem wasnt my childs ability to learn and comprehend it was me not standing behind this teachers opinion of my child and expertise from 37 years in teaching. y child was home from school more than the norm due to her severe headaches. Which led to the guidance counselor threatening me with DSS. In short the problem was my daughter had difficulty processing complex information that was not organized as 1 start 2 middle 3 ending. Particularly in english where the reading material was complex and the gathering of the material structuring it and understanding a word in several different contexts. While the teachers remarked my daughter seemed dazed stared alot and appeared lost only 1 in 9 supported my belief that it was not for lack of trying.I got the sense she was just not comprehending what she was taking in and retaining it especially in English. In our case it seemed the info she would read at homework time would just "fall out of her head" come morning. In time I learned she was not grasping the more indepth materials and she just gave up. Developed anxiety and believed she was stupid.

Even with Chiari diagnosis explanation in relation to learning abilities just gets lost. She scored above average in most of her learning eval but low when it came to sensory input and complex thought?. To explain it simply to any one that asks in the interim of your sons testing it may help you to refer to the paragraph below. And in the meantime ask that he have an aid to help him organize materials. My daughter has learned to use the 3 column system for information and assignments

If you continue to encounter resistance from your sons school you may want to look into an educational advocate for him.

They are a wonderful resource to gather testing information about your child and assist you at school meetings.

http://www.childrenshospital.org/az/Site699/mainpageS699P0.html

The Chiari malformation can also cause fluid to accumulate in the spinal cord – a condition called syringomyelia – which can cause scoliosis in children. Syringomyelia can also make it harder for the brain to process and organize sensory information that comes from the surrounding environment.npageS699P0.html


#16

My daughter is exactly the same. Can’t remember a thing. She’s had four neuropsych’s. Also, b/c we know about our school district just flat denying any IEP applications, she is in private school. In most areas you can do private school and home schooling at the same time and still be eligible for all the accommadations. We even contacted our disability law center who confirmed our School Districts just deny IEP’s in Alaska. Sad, but true. Also, the delays didn’t show up on any testings until she was 8. B/c they don’t ask you what city you live in at 8. You are supposed to know it. But for my daughter, she cannot even remember that.


#17

wow! I just read this blog chain. it makes a ton of sense. Im 47 now and went thru what you son is going thru my whole life, INCLUDING today. having one one reading coach from first grade thru high school, I learned how to “train” my head to learn, and graduated college with honors. I am a banker today, after being told I would never get past the 6th grade!
To this day I still can NOT spell, HATE reading, and have problems with understanding what is read. But I have learned how to get thru life. Back in 2016 I had decompression Chiari surgery and STILL have these same issues. I believe my brain was “injured” for so long that now it is permeant. I still go thru “flair-ups” to the point of getting wrote up and put on probation at work. I don’t know what to do or where to go for adult help now. keep in mind chiari does come and go due to where the brain is “sitting” inside the skull. (that is my option) which is why there are flair ups and great times. it has been just recently I started to link LD to chiari in my mind. thank you for pointing this out so I don’t feel crazy with linking the two together. Tell your son he will live a normal life once he learns how to make his SPECIAL head learn.


#18

My chiari is/was congenital. However, I did not get diagnosed until 40 years of age. When I look back the signs were all there. However, I don’t remember signs getting really bad until junior high. Bad headaches and fatigue started to become apparent. Then, when I started high school, it was just horrible. My parents would take me to the doctors with no diagnosis other than anemia and telling my parents to get me to bed earlier than 9:00 pm and take iron supplements, spinach, etc.

If I could say this objectively, now that you know he has it, it is very important to be careful with what you verbalize in front of him. It is important for him to reach his maximum potential without him feeling anything less is expected from you. I have a daughter that was speech and learning impaired in school, with auditory processing issues. So, I learned this early on. Possibly, he doesn’t try 100% all of the time if he thinks he has a built in reduced capability mechanism. (not saying you do this)

Ultimately, the big thing to consider is, if he attends college after school, he will need proof of his disability to receive extra support in college. This was the case with my daughter. Colleges will need that proof. At lease this was our experience.
Also, if I can speak objectively again, it sounds like you are in a district that holds the bar high for children. So, consider it a blessing! It will just take some effort and time for them to see your child through your eyes…hope this helps…:blue_heart::green_heart:


#19

Wow it’s been a very long time since that first post. Craig had surgery when he was in 8th grade. He had gone to a new neuropsychologist in 12 th grade to set him up for college. The school never followed his IEP. In the last meeting before college. The school stated he had decompression surgery which fixed him. Funny the neuropsychologist said he should be treated as a severe head injury student. He had a lot of learning and memory issues. So now in 2 nd year of college out of that school district. He made honor society for the first time ever ! He’s doung well on his own. Wants to be a police officer. Thanks for all of your supportive answers. And input. You are incredible people :smiley::pray:t2::+1:t2: