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Joined: Apr 2010
Posts: 2,498
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Joined: Apr 2010
Posts: 2,498 |
Who does fine academically, but struggles socially. If there is anything between a 1:1 aide (which we will clearly never get) and keeping him in the office during all recesses and lunch breaks (the latest suggestion from the school), we haven't been able to articulate it. There's a ton they can do, if they are willing to bother. Keeping him in the office would seem to be a non-starter (how is he going to learn social skills? If this is a persistent issue, he needs more practice, not less.) How old is your DS? Some options: --weekly lunchtime social group, facilitated by guidance counselor or speech therapist. Can focus explicitly on friendship themes or be a conversation/book club, depending on need. Can include only kids who need work on social skills, or a mix of kids who need help and peer buddies. --pushed-in special educator or trained paraprofessional support during particularly social times of day (group work, gym, recess) --educating the school staff who deals with the child (not just his teacher, also the lunch/recess aides, gym teacher, others who have lunch duty, etc.) about ways to watch for problems and cue him what to do. Apart from school: --outside-of-school social skills workshops run by speech therapist or psychologist. --enroll in Indian Guides, Lego club, Cub Scouts, or any other situations where kids are explicitly learning to work together. DeeDee
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Joined: Apr 2010
Posts: 2,498
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Joined: Apr 2010
Posts: 2,498 |
I asked what I should ask the school to change in light of these new test results and was told "Give them the report - they should know what to do." I heard back from the school and they said once all team members have a chance to review the report we'll meet to discuss any changes to her IEP. Nice that they think you're doing the right things; but I'd ask for more specifics. Most schools aren't going to be doing everything the neuropsych would recommend-- you need to know exactly what the ideal treatment plan would be, so you can get as close as possible, or as close as you care to get. If you don't know precisely what's needed, you're still just relying on the school for information; not as good for the careful, planning sort of parent. And that recommendation is definitely part of the neuropsych's job. 2) ________ may benefit from a cognitive remedial program with the emphasis on memory, attention including hemiinattention, and visuo-spatial perceptual organization. She is not acquiring reading/writing skills at the rate that would be expected give her verbal IQ and precocious language development, and her educational program should be reviewed in light of these findings I would want to know what program this would be (precisely) and what person the neuropsych believes is qualified to deliver that program. This is an area where there are junk science people ready to take your money; the neuropsych should be willing to say (verbally to you if not in writing) exactly what methods can best be used to remediate these issues. Vision therapy is very good for some people; some see benefits only during the therapy, and regress after; for some it does nothing. An honest provider will do an assessment and say whether it's likely to be of benefit; a less honest one will just take your money. The exercises are taxing and tedious; finding out from the neuropsych exactly what program will work is likely the best way of not wasting effort and money. 3) Further occupational (OT) evaluation, therapy, and consultation to address fine motor and visuomotor skills. It may be possible to pursue this through school and the OT should provide regular consultation to teacher and parents to help promote generalization of skills. We have found that what schools offer in regard to OT/PT can be supportive but is sometimes not enough to get the job done. YMMV. If your insurance covers some outside therapies, you could look into that. But I agree that the OT in school can be very important for generalizing skills across the day, making sure everyone understands what's being worked on. Hang in there, DeeDee
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laurel
Unregistered
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laurel
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Pemberley, your love of your child comes through so clearly.
I hope, amidst all the tests and worries and research, you are able to just have some fun as a family.
You've mentioned a couple of times feeling guilty about your genetic contribution. Well, here's a pat on the back for the thoughtful, loving approach you are taking to help your child. It sounds like your child has two parents working together with thought and care. Lucky kid!
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Joined: Aug 2011
Posts: 739
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OP
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Joined: Aug 2011
Posts: 739 |
Thanks Laurel and DeeDee. As I have digested this for a few more days I have tried to come up with an action plan. We have an appointment with the neurologist next week. Several people have strongly suggested an MRI so I am guessing he will order one so we can rule out a tumor causing these headaches and unusual numbers. I'm not sure what else would be done to rule out seizure disorder but I am guessing we'll be finding out. I find that I am not overly upset about these things despite the reaction from everyone around me. I think it is because if they are an issue they would be present whether I know about them or not. It would be better to find out and deal with it so I am being very practical. Also my "mom gut" isn't feeling a real likelihood that they are there, especially the possibility of a tumor. The LD's and migraines really have me concerned though. These are "invisible disabilities" that will affect her throughout her entire life. I have been totally run off track by migraines (and probably undiagnosed LD's) despite being HG myself. DH clearly has major LD issues which his parents could not accept when he was a child. The combination of those plus terrible migraines makes many days very, very difficult for him too. I so want to waive a magic wand or find a miracle therapy that will save DD from all of this. I know I can't but I really, REALLY wish I could. So now to some practical considerations, some of which I am hoping the folks on the board can help with. First, if I can't understand the neuropsych's explanations or recommendations I will find someone who can. After we visit the neurologist I think I will get back in touch with Dr. Beljan and see if maybe he can review it all for me and help come up with recommendations to bring to the school. I think that what may have happened was that he sent me to the best clinical np he could think of because of the unusual numbers. Now that I got that info I need someone experienced with 2E kids who can help me bring the info to my school district in the most efficient manner. I also may hire the LD advocate to give us background info but not to bring to the meetings with us. I also need to make sure that I am preparing DD for future success is school. I totally accept that they really need to focus on basic reading and writing during her take out times in 1st grade. We will continue to do content enrichment on our own. (We make it fun.) I am also going to buy a computer that we set up for her to use comfortably. A friend will be helping us select the machine but she said we need to have an idea of what software it will need to run. Any suggestions for FUN software to help her learn typing and keyboarding skills? Should we expect to have her use Dragon down the road? Any other voice-to-text or text-to-voice software to consider? Mac or PC? With visuo-spatial issues any special considerations for the monitor? Oh, and if her migraines are being triggered by fluorescent lights any suggestions? I am going to get her earplugs to help with sound sensitivity but has anyone had any success on the lighting front? Sorry so long but I really appreciate all the help and support you have given me on this journey so far. p.s. Yes Laurel, we have LOTS of fun. I think DD is about the happiest, most adventurous and fun-loving kid I have ever known. Lots of giggling and laughter around here, despite all that is going on 
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laurel
Unregistered
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laurel
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I loved hearing about the giggling and fun at your house! Sounds like you have a resilient and fun kid!
You had mentioned this concern:
>if I can't understand the neuropsych's explanations or recommendations
When you visit the neurologist, you should get answers and recommendations that make sense to you. You deserve them and answering these questions in a crucial part of the np's job!
It may be all new to you, there may be jargon and assumptions about what you know... ask all questions you need to ask. Ask for a written list of recommendations for home and school. Go back and ask again and again until you get the answers you need. If the doc seems rushed, ask for a follow-up appointment to discuss your questions. DeeDee and polarbear had some great suggestions about this earlier in this discussion.
It's a great idea to have Dr. Beljan or someone help coordinate the plans! But I would say that you deserve helpful info from each specialist you see, too!
Sorry I don't have suggestions about the fluorescent lighting or computer choice--someone with more experience in those areas will chime in soon, I bet!
Good luck, take care!
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Joined: Aug 2011
Posts: 739
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Joined: Aug 2011
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Saw the neurologist yesterday and he ordered an MRI as well as a 48 hour EEG which means she will have to go into the hospital for 2 days. He is "hoping" this is all something she will outgrow but could be a result of her concussion last February. Also prescribed something to help with the headaches but is thinking ithey may be the result of anxiety. Her happy disposition masks a lot and he pointed out that she has a lot of frustration to deal with as a result of the growing list of ld's. I will have to push the school to add some focus on her strengths along with all the pull-out and push in for LD stuff. I can't imagine how frustrating it would be to spend 6 hours a day working non-stop on things that are so difficult physically and never get to enjoy the stuff you're good at. Classic 2E dilemma huh? Anyway yesterday was also dd's 7th birthday so after her appointment she had an absolutely perfect day. I can't imagine any little girl having a better birthday. We went totally overboard but she enjoyed every minute. With all she has going on I thought she deserved a day of total spoiling Bought the computer and fun learn to type software. Now a week and a half break from school will also give the migraines a break. Crossing my fingers anyway...
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Joined: Aug 2011
Posts: 739
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Joined: Aug 2011
Posts: 739 |
Quick update: We are just out of the hospital after getting the EEG and MRI. We had to stay an extra night because they picked up a *brief* (i.e. quarter of a second)discharge spike the second night. I don't know what it means - if anything.
Headaches stopped over the holiday break but came back after a few days back in school. Also had a bad headache each night in the hospital. As usual her personality and vocabulary floored everyone in the hospital - "Is she always like this???" She had the other kids singing and dancing - the staff even brought each newly arriving kid by dd's room so she could make them feel welcome. She is being a really good sport about it all - I really hope we can get some answers for her.
We have a meeting with the school scheduled for next week to hopefully implement some recommendations from their OT. I doubt we'll have answers from this testing by then but hopefully we can at least address reducing any anxiety or see about limiting exposure to fluorescents. Still not sure just what to do with the neuropsych results. I don't feel I can push for more info from anyone until we get the results of all these neuro tests. Oh well, this is a marathon not a sprint - right????
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Joined: Apr 2010
Posts: 2,498
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Oh well, this is a marathon not a sprint - right???? Right. I hope you are on the road to useful answers! Hang in there. DeeDee
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Joined: Dec 2005
Posts: 7,207
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Joined: Dec 2005
Posts: 7,207 |
*******
2) ________ may benefit from a cognitive remedial program with the emphasis on memory, attention including hemiinattention, and visuo-spatial perceptual organization. She is not acquiring reading/writing skills at the rate that would be expected give her verbal IQ and precocious language development, and her educational program should be reviewed in light of these findings Take a look at this if you already hadn't - http://en.wikipedia.org/wiki/Cognitive_Remediation_TherapyHemiinattention is also called Hemispatial neglect - http://en.wikipedia.org/wiki/Hemispatial_neglectI have no idea what visuo-spatial perceptual organization means exactly (can't find it on google, never a good sign so stop feeling bad because you don't 'get it' ok? but this site looks like it might be worth absorbing - http://www.macalester.edu/academics/psychology/whathap/ubnrp/dyslexia/types.htmlGood luck! Grinity
Coaching available, at SchoolSuccessSolutions.com
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Joined: Aug 2011
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AARRGGHH! Had a phone consult today with the neuropsych recommended here and it looks like the eval we had done is not valid! Results don't make sense, conclusions are not based on the data, etc. We can't be getting scores in the 2nd percentile followed by scores in the 95th percentile that require the same functioning, etc. I offered to travel with dd to see him but now we can't test again for awhile because he would use the same tests and that would give a "retest" artifact. Absence Seizures could possibly explain these weird numbers but she didn't show any seizure activity when we were in the hospital last week. So we are left with NO ANSWERS!
I am so beyond frustrated I can't believe it! In talking to him today I got a true sense of what we SHOULD have gotten from a neuropsych eval which is not at all what we actually got. We were put in touch with a top-notch neurologist which is good, and we are working on ruling out medical reasons but we got nothing - Nada, zero, zip, zilch that will be useful with the school or assessing ld's. Oh and we "can't" have the happy, outgoing personality with the numbers on this report. Someone with these scores would be so impaired they would be almost unable to function.
It's hard enough running this marathon without being sent back to redo portions of the race...
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