A little background
Holly has always been way ahead of the "developmental curves" you know you always think that is important - then well, you get a little wiser as a parent and as a person. Remember me being all excited about how well she did in her early childhood test? And a few of you were like, whoa hold your horses, it really doesn't mean much... Hmmm.... I guess as I grow as a parent things that I thought were great, were well, not such a big deal, and things that I thought were not a big deal, now are. But - her testing did play a part in the doctors looking at the big picture and needed to rule out the medical first.
- Prior to a year -Early development - ahead of curve - walking (8 1/2 months, talking clearly by 11 months)
- 13 months – serious fall and hit to the head - The double deep stitches right between her eyes
- 21 months flu - when we couldn't get her fever down past 105 for over 4 days and she was hospitalized
- 3 Early childhood testing - scored 99 out of 100 on all basic developmental tenets
- 4 her head hit at the Y where 911 was called
- 5 her concussion from falling off the back of grandma's couch - her not knowing where she was, not being able to walk
- 5 again - all the falls last year where we finally did a CT scan again
- 5 Multiple struggles in math at school and reading at home
- 6 balance still an issue, short term memory issues – things that “should be there” all of a sudden not so. Much more so than just normal childhood regression.
- Multiple struggles in math at school - she loves math, although is not performing at the same level as her "peers" (keep in mind she is one of the youngest in her class, sometimes by over a year) - I digress....
- and reading at home and at school – same issues in French or English
- Complains of a train in her ears
- Complains of joint pain
- She is doing wonderful on any verbal (French or English),
- Long story short, her teacher and her reading teacher were really worried, after countless discussions it seemed like there was a definite short term memory issue.
An example - She could read the cat is blue the next sentence would be the cat is red she would have no concept that she just read the cat is. The words did not look the same to her....
That is a really basic example, and probably not the best, but there are many more that led them to think of the short term memory. Both her reading specialist and her teacher were not thinking just a reading issue. - Breaking point – bluntly asking the teacher – have you or any of the other teachers dealt with this exact scenario? Do you know what you are dealing with? Do you know how to help? It was a no from both the reading specialist and the teacher…
They both WANT to help her – they are at a loss
- We go into her doctor – again. These are issues that we have been discussing on and off for over a year. – So when I bring her in for the train in the ears
Does neurological type exam – seems fine
They do a hearing test - fine
Do the tymphonic hearing exam (checks inner ear) this does work
I think they did a vision test – but I am not sure of that. – I have some information on special vision testing as it relates to processing which I still need to follow up on
Want me to wait another month, then get referral for further testing - A week later still complaining – really seems off – I figured that I waited over a year at this point, I thought I would just “get the ball rolling”
Call the peds – get the referral – - 1st referral to a neurologist to make sure there isn’t any damage from all the falls, etc
Does the exam – seems OK – mentions small possibility that this could be based on seizures - Refers her to MRI and EEG and Neuropsych testing based on exam
Has MRI,- (there is nothing like sitting in the room while your child goes through an MRI it is so scary – you keep thinking about each scan and what it is seeing in her brain and oh the “places” you go) To me – this way 100X harder than going through a catscan for any of the head hits.
Comes out fine – except – she has the sinus infection again.
EEG – not fun for her –
Comes out fins - Neuropsych testing
Thought we would have to wait until July – got in right away
8 hours worth of testing/meetings later - The full report will be forth coming within the next 14 days.
The potential for a brain injury, as you know, that was the main reason that we went down this path. They did not think was the case, due to her scores on the PRI and PSI sections (see below), of course, they cannot say for sure; however, her scores are within normal limits...
Also, there was no further evidence of any mild seizure activity, so that should be ruled out.
What they believe she has is an emerging reading disability.
· Her evaluation showed a 20 point discrepancy – from her IQ level and her reading achievement score
1. (WISC IV test) – her current real ability (this can change over the next year or so since she is on the young side of taking this test)
a. Verbal Comprehension Index (VCI) 95
b. Perceptual Reasoning Index (PRI) 104
c. Working Memory Index (WMI) 106
d. Processing Speed Index (PSI) 94
2. (WAIT III test) – where she is actually performing
a. Mathematics 95
b. Reading 79
They recognized her attention issues and based on their observations, they did further attention testing
· She didn't qualify as having ADD - they noted her active tendencies, but she doesn't meet that criteria. (close on one scale, but not enough)
· They did say that they want her retested in 2 years as having a reading disability and attention issues can each cause each other to seem worse… - Where do we go from here?
I spoke in depth with the neurophysiologist regarding the potential effects that being in an immersion school and having a reading disability.
· She feels that can play a part; however, that that is not a reason for her scores.
· She did not advocate removing her from the program. I would see that as an absolute last resort, since Holly enjoys it so much, is very proud of herself and is doing well with the verbal language.
I am requesting that the school district get her in the mill for the testing (they may not actually have to test her since it has already been done, but I have to follow that process)
· Largest recommendation from neurophysiologist was that we should make sure there is a formal summer program in place.
· I am not sure if I can do that through the school - but I know that even if I make the request now, the district can take an additional 30 school days to even begin the testing, so I am trying to be proactive.
The mathematics score really interested me, as you put down that she is still struggling with that. Granted, what the test requires them to know versus what Normandale expects, I am sure are very different.
Speak with teachers, make sure they are continuing to challenge her, that because she has the LD label – that they don’t continue to challenge her in her other strengths. Work on selecting the “right” kind of teacher next year
Breathe– as hard as this may be to work through it – it is something we can handle
Most important – continue to focus on her strengths, look for outlets for her that increase her confidence and let her know that she can do what she sets out to do.
3 comments:
Oh man, I didn't realize you were going through all this. No wonder you said something about being stressed. HUGS!!! Sounds like you are on top of things and doing was is right for Belle.
That sounds like a lot for everyone to endure. All I can offer is the suggestion to try to put yourself and H in a greater context; make sure the scales you're comparing her to are ones you really think are important. Most kids balance out by age eight; if the physio stuff is coming back negative, maybe she is just spending time exploring some part of herself.
Why they do that (to us!!!) I don't know, but they DO. Thinking of you guys.....
yes Lory - that is why they said she was young for the testing; the whole concept of her window not opening - but after speaking with multiple people - and having the testing done, they all feel it is not just a matter of her window not being open yet. However, the intent was not to do Learning Disability testing - it truely was to look for a serious head injury - that affected her short term memory.
I'm trying to take this one step at a time and breathe and look at the big picture - but literally - this testing and the referral process and everything normally can take months and months and we did it from start to finish in under 4 weeks. It was like God has some reason for having it work like this. Every person I have talked to that knows how this all works - could not believe that we got this all done.
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