fourcatmom
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Posts posted by fourcatmom
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The meeting went very well. She has an IEP. She will also get a chrome book laptop from the school and they are going to put some programs on it, like speech to text that will be helpful to her. She will also get some counseling services but she will be able to use Skype on the laptop to do that. Works for me since we seem to be in the car all the time now.
They will not push to retain her but she will have an extended school year which I think will be really great. I can't image stopping come next spring and loosing all the ground work so this will be great to have the support year around and that way too she can be on track for high school, which she really wants. Retaining her will not help her confidence and would really be a mistake and I am glad that the team saw it that way too.
I feel like I can do this now! :hurray: And, I think she is finally feeling like she can do this too. :hurray:
I am not going to stress about the number of hours as well since really doing anything will count at this point. I do need to follow 8th grade subjects though so middle ages for History is not going to be easy. :glare: Math I think I have covered and science is earth science which she actually is very interested in. I think I will look at some of the planet videos and things like that and go from there. LA I am going to look at the History of the Horse from Beautiful Feet as I think that will qualify as LA. She is strong is grammar and vocabulary so I am not sure if I would have to add something extra for those. I have to look at the program a bit more. History - looking at audio books, maybe SOTW but not really sure they will hold her interest enough for her to pay attention, the same goes for movies.
Anyone have ideas for History?
Looking at BF again I am not sure that will work. It clearly is listed as a history course but I was thinking since it involved reading books that maybe it could be LA but it also says 3-6th grade so not sure on that either. I am guessing they would want me trying to do 8th grade level work with her.
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I ended up talking with the school psychiatrist over the phone and it went better then I anticipated. He apologized for the meeting, saying that he heard that I was upset after. I explained it was more being overwhelmed and asking questions about how to proceed that lead to further questions that no one could answer. He said he was kind of on the fence about which program to put her in and he was trying to be hopeful and optimistic, stating that he felt that she did display academic success and had the skill set necessary to succeed. He also commented that he sees so many kids with so much more difficulty that he went with the 504. He also said that he did agree after talking about it more that she could use the additional support that the team could provide, including counseling if she wanted it. I think this could be helpful in giving her tools to work though the frustration and the fatigue at home. She did do better for them then she probably does with me. She definitely knows how to pull the mom card and use it but like I said before I don't want her to use this as an excuse either. I just need to find that balance.
So I guess I don't need to be as nervous about the meeting tomorrow and hopefully this will all go smoothly. I am actually glad we talked now. I probably would have gone in defensive tomorrow. Not I am ready to be assertive but not on the defense.
Thank you everyone for all your advice in helping me navigate this and all the other support that you offered during this whole process. :grouphug: It really helps to talk it out with others.
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So I have sitting her reading things online, talking to my dh, and processing some of my thoughts. I was definitely not prepared to fight on Monday and it took me some time to figure out why. I have 0 problems fighting at the doctor. If I don't know what she needs I research it, talk to people, ask questions and then push ahead. I rarely feel defeated and if I don't get what I want I change things up so that I can get it someplace else. I guess the past three years I have spent fighting with my lung disease has helped me in that process. For some reason I am just more confident on the medical side of things. It's kind of funny that I feel that way since I worked in special education prior to getting sick.
I worked at a special education co-op based preschool in our local school district. I implemented IEP's all the time. Maybe our school was exceptional but for the most part I didn't see parents having to fight for services, except maybe VT. It just seemed like the school cared about the kids and the kids got what they needed. I am sure there was a lot I missed out on that the families went through and probably only saw this through my own rose colored glasses but I know as a "team" we did really care about the kids. I went it this meeting thinking they cared about mine and I guess that's where I got lost. I think because she is homeschooled I think in terms of adjusting my expectations, environment etc to meet her needs because even with an injury or a disability we have the flexibility to do that. I can school a night kid in the evening, it doesn't have to be in the morning. I keep thinking in terms like that but your right I am not looking at the big picture and I assume that since she is at home that I can fix everything and it's only a matter of time before things go back to what they were. I have had some tears today working through this but I accept that it might not return to what it was and I have to look at what is on the table now and push ahead based on those needs. I think if she was in a school setting I would no problem fighting for what she needs (breaks, lighting, test taking, etc) but it gets clouded in my head when I think of school at home. I have no idea what curriculum to choose at this point to best meet her needs. I have no clue at this point what she should be doing. Where do I push, not push, adjust? I am frustrated trying to implement what little is being asked of her and I document everything. I really don't know what is reasonable to ask of her. i question myself all the time. Am I pushing too hard or not pushing hard enough. Is she just being a 13 year old or is this really hard for her? I don't want her to think of this as a disability or an excuse. I am really still trying to figure this whole thing out.
I am also not used to thinking of school as providing services, for us. I think medically. If she needs PT I go ask the doctor. I don't think to ask the school. I have to change the way I think. She should have been put on a home hospital program a year ago. Again, I just adjusted my expectations but the school also let things drop. I want her to be successful in high school and beyond. I want her to feel and be successful in life.
I always thought this was temporary. :sad:
I have been reading over the OT report specifically since I think that is what I feel would be most beneficial (in terms of services) to her. She is already starting PT though our clinic so I don't need to worry about that. I am sending a copy to her doctor today and he is going to review it. I asked him to write a letter of recommendation if he feels that OT is warranted. I think they would have a harder time fighting the advice of a doctor. We will see what he says. In the report it keeps going back to even though her scores are low, she can access her educational environment thus doesn't need OT. I found something useful online that talks about L.I.C.E and in working with students with TBI. It's not just about the environment, that's not the whole picture. L.I.C.E is the Learner, the Instruction, the Curriculum and the Environment and looking at just one aspect regarding qualifications for services does not take into account the students whole needs. And, I have been doing the same thing thinking that I can just make accommodations to the environment and eventually things will get better. I need to not only look at what I teach but how I will teach it, how she will best learn it and I need to look at her. I need to see her strengths and weakness now and not what they were before. I think if you take into account her (the learner), the instruction, the curriculum and the environment then OT is warranted. She has to be able to do the work and these visual problems will affect that.
Am I on the right track now?
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Now I really feel like I am going to have to get tough. I emailed the office this morning asking for a completed copy of the Neuropsych report. They didn't give any out because he had to revise something in it. I want to review it before tomorrow's meeting.
The psychologist emailed me back and asked if I could come in at 2 and he could give me a copy. He also stated he wanted to go over next steps and options before tomorrow's meeting. I said no, please just email me the report.
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My best advice, I think, is to assume that the ONLY support/rights you have are what's in the 504 or IEP. IOW, pretend that everyone does not know your daughter, does not want to help her, and is trying to make her act like a typical student.
The number of breaks she needs, the non-strict hours, all of those things are REALLY BIG DEALS....even when you're homeschooling through a charter. Imagine if she was asked to do a test where she had to match items from the left column to the right column. No amount of extra time makes that "fair" to her. She simply doesn't have the skill to do that without completely exhausting her brain. (at least that has been true for my two kids with scanning and tracking). Imagine doing multi-columnar math and proofs. I think you're still thinking about life in terms of where she is RIGHT NOW (only taking a few light not really academic classes), but reality is that at some point the big picture of what does this kid need to do to graduate is going to come up. And you don't know that everything is going to "come back". Because it may not. Because TBIs suck and as plastic as we want brains to be, the reality is that damage is damage. IEPs are adaptable and changeable, but the problem is that your initial IEP meeting is not addressing how bad things really are right now. You are framing the conversation for the future now.
TBI is a separate category, as mentioned above. It's in this hazy land of OHI, and there are a huge number of advocacy websites up on academic IEPs for TBIs just because people in the TBI category tend to have their issues minimized because services are expensive and budgets are limited and adapting and paperwork is a huge hassle.
Have you ever looked at something like this kind of checklist? http://biaindiana.org/wp-content/uploads/2014/01/in-module_v.pdf
http://media.cbirt.org/uploads/medialibrary/2010/09/Guided_IEP_for_Students_with_TBI_16.pdf
Your right. I am often thinking just about how we can get through this day, this week without looking long-term. Thanks you for your post.
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One of the tests that she did for OT was called the DTVP-A test and I found some information about the test online but mostly why it is given which was interesting:
The DTVP-A is a battery of six subtests that measure different but interrelated visual-perceptual and visual-motor abilities. It is especially useful in the evaluation of the neuropsychological integrity of TBI and stroke patients where right-hemisphere function may be an issue.
For example in the visual motor search sub-test she scored a 4. (1-3 is very poor and 4-5 is poor). Her percentile rank is 2% for this area. I can't find any other info online about the scoring but to me this should be enough to warrant OT in my opinion.
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She qualifies under TBI. In the list of disabilities that I looked up online that qualify, TBI is it's own category. That is what they listed on the 504. I have the OT report, I will look at it again and see if I can figure out the numbers that you mentioned.
The thing that upset me about the 504 too is that the person writing it had never even met my dd, and did not participate in any testing. All the other people there really understood her needs. The 504 person wanted to put her in classes. It's like she wasn't even listening to what the problems were. No with the noise and lighting alone she would not do well in a class right now. And I barely get 20 minutes out of her at a time at home.
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Separately -- I think it sounds like she needs OT or something. Those scores sound concerning to me. I don't know if you have any other information about those areas wrt the tbi. But they sound concerning.
The reason you are not getting OT, first and foremost,is you are getting a 504 and you do not get OT services with a 504.
Okay, I see that now. Thank you. I do agree she needs OT. They said she doesn't need it to be successful at home.
If you qualify for an IEP, then that can put OT as a service on the table. I don't know the ins and outs.
But yeah, with a 504, of course you are not going to get services of any kind. That is what a 504 is.
I would honestly call the uncomfortable man (vague on who he is) and ask him what you need to qualify her for OT. He sounds like he is an advocate for your daughter.
He was an admin for the school. Never met him before but I did get his business card. Why he didn't speak up in the meeting if he felt they were not making good decision is beyond me but I guess I needed to start it. He does seem to be on my side so that is great. He got the meeting rescheduled within three days.
Here is how it works, though: It can count different for a parent to ask for something that a teacher. Sometimes it is better for you to keep your mouth shut and have the teacher or therapist bring something up. Sometimes it is better for you to bring something up instead of the teacher or therapist. You can honestly just say "shall I bring this up, or would you like to?" and follow their lead, imo. But there are things where it will come across better one way or the other. Having an advocate is very good. I mean -- without this guy you might just be left hanging now. Try to see if you can e-mail or speak with him, and in the nicest way, ask for advice or ask "how can I best bring up this issue?" or "how can this issue best be presented in the meeting?"
I will email him. Thanks for the suggestion.
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I guess I am confused more on how they differ in terms of homeschooling? I can already create a flexible schedule and things like that but if she has a 504 I think she would be expected to turn in normal 8th grade coursework in an appropriate manner to our CT (credential teacher) when we meet monthly. At this time she is only doing Animal Husbandry, LA and PE. I am not sure a 504 plan can accommodate that? Does it come down to the services they would provide, and pay for? She is going to get clinical PT. The only thing I think she needs it either OT or Vision therapy.
I think they have a good feel for who she is, they all said they had to adjust their schedules to accommodate her, they all had to extend testing beyond their normal expectations. They all had to dim the lights. They all saw her fatigued, with headaches, and hurt and sore eyes. But, i am not sure they know how to handle the situation. They keep pushing for a home hospital program but I don't want it. She is getting better...I won't go back to that now.
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So I had dd's initial IEP meeting yesterday with the school district (we homeschool though a charter) and received the results from her academic testing, her neuropsych eval, and PT and OT evaluations as well. When they started the meeting they introduced a new woman who I did not meet at the first meeting and she stated she was part of the 504 plan so right away I knew they were going to put her into a 504 and not an IEP.
I don't have the Neuropsych report in front of me so I am just going off memory but the major issue was in executive functioning (not a huge surprise given the TBI). I also remember him saying she had sensory integration but I thought he added more about that and can't recall what it was. Most of the difficultly she had was in anything that had to with tracking, scanning, memory or anything visual. And of course she was labeled at-risk in mental health but that wasn't a surprise either.
Academic testing came back pretty much average. There is quite a bit of range for average but she had a few pretty low scores too. Numerical operations she tested below average or at a 4th grade level. In reading comprehension she actually testing at a 2nd grade level.
PT she just testing below average in strength (not a big surprise the amount of brain rest she has been on) and also a below average in bilateral coordination.
OT was more interesting (but she still did not get services since we homeschool I guess she can adequately access her environment). She tested well below average in fine motor precision, below average in both fine motor integration and upper limb coordination. She tested poor in visual motor search and below average in general visual perception and visual motor integration. She was also not able to demonstrate convergence with both eyes.
Not sure what all that means yet, I am still reading all the reports.
So they told me despite some low scores that she didn't qualify for an IEP. I signed the paper thinking maybe a 504 was okay since she is at home with school anyway. I was happy her scores were good but still confused. Everyone left except the 504 teacher. As we were talking I started asking her questions about how this was going to really support her as she is just starting school and not even able to do full time yet. I had a lot of questions that she couldn't answer. She went and got the Admin that sat in on the meeting and he comes back into the room, closes the door and sits next to me. Totally confused at this point. He says, "so you have more questions." Yes, not sure what this all means for her day to day and how the school is going to look at her work and what they will be expecting now that she does not qualify. He says he was really uncomfortable in the meeting and he should have spoken up then but he says that she does qualify and that she needs the services that the team could provide. He says he is going to call another meeting and bring everyone back and they will move her from the 504 that was just written into an IEP. So, I go back on Thursday for another meeting supposedly to put her on an IEP this time.
I welcome any advice you can offer because obviously I should have spoken up before but you feel pretty overwhelmed with info and it takes time to process it all.
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My daughter with Chiari I is on Lamictal for her headaches....which is a seizure med....which also addresses mood, eao depression. Might be worth asking the neurologist about if anti depressants aren't working and she has headaches as well
My ds takes a very low dose but it has been very helpful.
Thank you. You are actually the second person that has recommended that. She has been on most of the meds my dd has been on (she's an adult) and this is what she takes now. She was refusing to take her meds yesterday saying they are not helping so I am guessing I will be asking for a change soon anyways.
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I have read in several places that the function of the cerebellar tonsils primarily deal with storing and forming emotional responses. And have a connection to the sense of smell. I find that very interesting. Right after the accident I had posted that my dd lost over 20lbs due to a lack of eating which was a result of the lack of smell. They even put her on medication to make her eat. She said nothing smelled good anymore. I have also heard that the cerebellar tonsils have to do with memory.
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Off topic, but my 8th grader had daily headaches and some minor visual disturbance when reading. We recently had an OT eval because I am seeking to get authorization to get therapy at a place that offers Interactive Metronome to try to help her ADHD. After the eval, the OT said that my dd seems like one of her concussion kids. She had a CT scan after a head injury when she was five but no MRI. And I never really thought much about her concussion until the np and the ot brought it up.
This just made me think that your dd's CBT therapist is on to something. My mom who is a therapist is wondering why my dd's therapy doesn't seem to be working after nearly a year. The therapist also mentioned that dd isn't like one of the typical kids she sees for her issue.
So many things can come into play and the hope is that if you can figure it out somewhat, you can get more effective treatment.
It is like putting a puzzle together. I have found that getting pieces of info from the testing has helped and I am really anxious to see what all the testing reports show. I am wondering if they will help fill in a few more pieces as to if this is PCS or something else. I would hate to have her on depression meds (which don't consistently work) if she doesn't need to be. This is her 5th anti-depressant since March. Maybe there is another reason why she is feeling this way and maybe some of the symptoms are the same as depression but maybe the treatment plan would change. Anti-depressants and CBT therapy is not consistently working.
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I guess my question is...even if there is acquired chiari...then what? A shunt (but there's no fluid build up)? Decompression surgery (but ICP levels haven't been measured)? I'd keep asking questions, but at some point with brain stuff there's a huge trade off when you try to fix problems....
It matters because we are still actively seeking treatments for her symptoms which they are assuming are related to post concussive syndrome. If they are being caused by CM then I would want to know that. She is on medication (depression and headaches) and I am not sure if that would change if CM was added to what might be causing these symptoms. I don't want to wait another year to have this info since she is still really struggling, not even doing full time homeschool. I don't know what path I would choose if CM is playing a role here and I can't even go there yet and think about all that. It could be nothing. If she were symptom free then I could wait. Even the CBT therapist keeps telling me to keep pushing for answers. She has said that the "normal" treatments and things that she does with clients with the same problems, don't seem to be consistently helping my dd. She wants them to look deeper.
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Here's another one that's possibly more relevant:
Freeman M, Rosa S, Kohles S, et al. A case-control study of cerebellar tonsillar ectopia (Chiari) and head/neck trauma (whiplash). Brain Injury [serial online]. July 2010;24(7/8):988-994. Available from: Academic Search Premier, Ipswich, MA. Accessed November 10, 2015.
CTE was found in 5.7% and 5.3% in the recumbent and upright non-trauma groups vs 9.8% and 23.3% in the recumbent and upright trauma groups ( p = 0.0001).
What's interesting to me is that the author seems to be saying that CTE equals CM. Here's the first two sentences of the abstract which seem significant for your dd:
Chiari malformation is defined as herniation of the cerebellar tonsils through the foramen magnum, also known as cerebellar tonsillar ectopia (CTE). CTE may become symptomatic following whiplash trauma.
That is almost what the doctor yesterday implied as well when I said on the MRI report (which since it was a different medical clinic he could not see) stated that she had CTE. He said, that's CM. He is sending us to a neurologist and I will bring all three films on CD for the MRI's from 2013 to now and see what the neurologist thinks. On the referral he put "to evaluate your double vision and headaches and the possibility of some contribution from Arnold-Chiari malformation."
Thank you for the research info. I will look into that today.
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The doctor appointment went well. He is sending back to the Neurologist to have all the films reviewed and to further asses the cerebellar tonsillar ectopia and possible CM as well as the headaches, double vision and other symptoms.
He also gave her 8 weeks of PT to strengthen her neck.
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Thank you. That was a lot of information and I appreciate you taking the time to write it all out.
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Have they checked her intercranial pressure if they are worried about chiari?
I am not a chiari expert, a neurologist, or any type of medical expert. The dizziness, lack of balance, and memory issues are explained by cerebellar damage/pressure. Likewise, the other stuff could be tied to cranial nerve damage--especially since the ones you mention are tied to nerves with long tracks through the brain.
When my dd's brain tumor began to block the flow of cranial fluid, it was obvious in the MRIs--are you seeing built up fluid or just changed in brain structure?
They didn't mention anything about fluid. It was the change in the structure. I am not sure they are worried about Chiari but I am curious about given this change and her symptoms. They want to repeat MRI in one year.
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Did they check the flow of cerebral spinal fluid during the test? I would ask for that. Are the doctors/hospital you are working with up to date in Chiari I malformations?
My 18dd has that and we have to monitor her but since an episode at age 9 she has been better. She is on seizure meds as well.
No they did not. it wasn't something that was even on my/their radar since two years ago it seemed like a non issue. They don't seem concerned by it. I am just wondering if they are missing something since she has a lot of the symptoms that seem to be identified with it and she now has the cerebellar tonsillar ectopia which was not present two years ago. They don't want to do another MRI for a year.
I am just trying to understand this more so that I can ask the right questions and push for what I feel is necessary, if anything.
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Maybe I should post this question on the chat board?
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I posted this on my old thread but since it's sort of a new topic that is coming up, I thought I would post as a separate question. I was reading old threads and it seems that are some people on here with some experience, so hopefully they will chime in.
Dd had her third brain MRI this week, she is still struggling with chronic headaches and based on a recommendation from PT they wanted to look at her neck again. This is all from the TBI she suffered last December.
In 2/2013 she had an MRI due to a the sudden onset of double vision, headache and eye pressure. We still do not know why that started. The MRI noted crowding at the foramen magnum but evidence of cerebellar tonsillar ectopia. In my old thread on double vision, I posted that the doctor was not concerned with CM and did not believe any follow up MRI's were necessary and that she would outgrow it.
Her first "diagnosed" TBI was in December of 2013, 10 months after this MRI. They did not do an MRI at that time. 2nd diagnosed TBI was 12/2014 and they did an MRI in 1/2015 and the report states: that there is again mild soft tissue prominence in the posterior nasopharyngeal midline as noted previously. (Not even sure what this means or if it is the same thing)
In her most recent MRI the report states that she does have cerebellar tonsillar ectopia.
The message from her doctor says that The radiologist did note cerebellar tonsillar ectopia, which is where in the back of the brain part of the brain tissue juts out a little. This can lead to something called a Chairi malformation, which can lead to obstruction of flow of fluid in the back of the brain that can lead to swelling in the brain and cause a lot of headaches and possibly blurry vision. On the MRI no signs of obstruction were seen and so she does not have Chiari malformation now and this would not cause her headaches but I would like to check an MRI again in 1 year to see if anything has progressed from before. Unfortunately the MRI does not explain her headaches
Someone mentioned possibly having an upright MRI would give more details. If she were having no symptoms I would not mind waiting another year but my concern is why did it change? There was no cerebellar tonsillar extopia in 2013 and now there is, two concussions later. Could a third concussion have started this whole thing back in 2013? The doctors think she has had more then two. Did the trauma from the two TBI's cause this to change? She had the crowding but they obviously didn't think she required follow up so they didn't expect it to change. And, the symptoms. Balance problems- repeated TBI's, dizziness, memory problems, depression, double vision (OT just confirmed she is still testing as having double vision), ringing in the ears, nausea, tingling in the legs, chronic headaches - although they are almost always in the front. The headaches often come after activity but can also be brought on from noise, ect. She lost over 20 pounds after the last TBI because she complained of a lack of smell. A lot of these symptoms could still be PCS but they are also listed for CM which she obviously has some early signs of or things relating to it.
I already email the doctor asking about an upright MRI and we see the TBI specialist on Monday. Any information you could share would be great. Thanks!
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That is very interesting. Of course I don't want her to have this but I find it interesting that her MRI has changed in 2 years. The first one noting nothing but crowding and the second one saying she now had what wasn't there before, just not confirming CM. Headaches, double vision and balance issues. Hum...worth digging a bit more into. Obviously these symptoms could be other things too but it makes me wonder.
Yes, she was lying down. This is all the child who has a pelvic tilt and scoliosis. Wouldn't this all be related?
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The MRI came back normal on both her brain and neck so that is great news. Doesn't help me figure anything out but at least I know all is well inside. They are going to go ahead and request a clinical PT evaluation to see if there is some things they can do to help her neck now that we know inside it's okay. They did say (and they have mentioned it before) that she has Cerebellar tonsillar ectopia. What I find interesting is that in her MRI in 2013 which we did because of the sudden onset of double vision and headaches they noted
"There is crowding at the level of the foramen magnum, but no cerebellar
tonsillar ectopia.".
In this MRI is states, "
Cerebellar tonsillar ectopia. The remainder of the examination is unremarkable."
He wants to do the MRI again in another year and see if it has changed. So this Cerebellar tonsillar ectopia can lead to something called Chairi malformation which tends to cause headaches and double vision but they see no evidence of this so the MRI is essentially normal and she does not have the Chairi malformation.
This was the message from the doctor, "The MRI scans did show that the brain tissue looked fine and no abnormal masses were seen and in the neck no disk herniations were seen and the fall did not cause any structural abnormalities in the neck. The radiologist did note cerebellar tonsillar ectopia, which is where in the back of the brain part of the brain tissue juts out a little. This can lead to something called a Chairi malformation, which can lead to obstruction of flow of fluid in the back of the brain that can lead to swelling in the brain and cause a lot of headaches and possibly blurry vision. On the MRI no signs of obstruction were seen and so she does not have Chiari malformation now and this would not cause her headaches but I would like to check an MRI again in 1 year to see if anything has progressed from before. Unfortunately the MRI does not explain her headaches."
Anyone know anything about this?
Testing Results are in / IEP meeting was confusing
in The Learning Challenges Board
Posted
I have no idea but they did mention audio books and it is on her IEP as well as a using a calculator but I haven't decided about that yet. I wasn't sure how they were going to do the audiobooks but they mentioned it several times. Maybe the program will be on the laptop? That would be cool.
I will look at audible. Thanks!