Her appointment was at 4:30, which we made it just in time for (thanks to the Bourne Bridge work being done). I originally thought about heading over the Sagamore but remembered all of the construction that is going on there to get rid of the rotary. I guess it wouldn't have mattered either way.
Anyway, on to her appointment. As per usual, she passed the strength and coordination testing with flying colors(this is standard I guess since he does it at every appointment even though it has never been a concern). When he asked about seizures I told him that she hasn't had any and obviously, he was pleased to hear that.
On a whim, I decided to mention Emily's difficulty with short term memory, organization, impulsiveness etc. Things have gotten increasingly worse in that regard, despite all of my best efforts (constant reminders, the keytags I made and various other techniques) .
I am glad I did.
As a quick aside, everytime I mention something to the doctor regarding Emily I always second guess myself ("Am I making a mountain out of a mole hill?" kind of thing) and everytime, well maybe 99% of the time, my concerns turn out to be legitimate or at least with good cause and possible "science" to back it up.
You see, I had forgotten that the abnormalities found in Emily's MRI were in the prefrontal lobes of her brain. This part of the brain is the part that controls all of these so called "executive functions" like attention and memory, organizational skills, and behavior. It's really becoming quite obvious that there is some sort of dysfunction going on here, related directly to the MRI abnormalities. This just isn't normal, or even borderline normal.
So, her doctor again reccomended neuro-psych testing. I had been in touch with his secretary a few times about this and to make a long story short...the waiting list to go to the Children's Neuro-Psych Department was a year and the one doctor outside of Children's that his secretary recommended did not accept our insurance. He gave me the name and number of a place in Newton called, "The Children's Evaluation Center" which has 8-10 neuro-psychs on staff, and is only scheduling out as far as December at last check(he just referred someone there a few weeks ago apparently). With 8-10 on staff, there is a good chance that someone will accept our insurance (we have BCBS by the way, but they option out the mental health coverage to Value Options, which some places don't accept). I just called and left a message on the "new appointment" line and according the the message, should hear back from someone within three to four business days.
Interestingly enough, he asked me why she didn't have an Individual Education Plan. Funny thing is, I didn't know she would be eligible for one. According to the law though, she might be.
Neurological Impairment - The capacity of the nervous system is limited or impaired with difficulties exhibited in one or more of the following areas: the use of memory, the control and use of cognitive functioning, sensory and motor skills, speech, language, organizational skills, information processing, affect, social skills, or basic life functions. The term includes students who have received a traumatic brain injury.
I don't think there will even be a question of eligibility given the MRI report, the obvious problems she has been experiencing with memory and organization, and the neuro-psych test results(whatever they may be).
I recently checked a book out from the library called, "Negotiating the Special Education Maze" in which I was thinking more along the lines of Julia going to the public preschool and how that all worked but I think I will read it now with Emily in mind. I am anxious to see what an IEP for a child like her would entail exactly(more concrete problems are obvious (if you have trouble with math, you get extra math help for example) but what do you get if you have problems with memory, attention and organization)? I am assuming it would be somewhere along the line of more teacher involvement in the sense of actually checking Emily's bag for what should be in it, reminding her to put things where they need to be etc. This of course, is all covered under her 504, but an IEP has many more legal and enforceable rules that need to be followed. There could be more to it (her specific plan I mean) but until it is written, I don't know what we will include.
So, I guess that's where we are right now. In the meantime, while we are waiting for all of this to actually get underway(the neuro-psych testing, the school assessment if her testing indicates that she needs an IEP etc.) I plan on having one on one meeting with her teacher to let her know what is going on and see if there is anything we can do right now to help Emily out on our own, without the "legal you have to follow this plan" stuff in place.
If you are interested in reading any more about the various tests, assessments, and other things I have talked about here, click on any of the following links:
Unraveling the Neuropsychological Assessment
Executive Dysfunction
School Psychology
The Frontal Lobe
I am surprised that the school hadn't approached you since you already are so involved but, then again why make more work for themselves.
ReplyDeleteI may have to look into this when Jackie gets to school age just for the celiacs. I guess in case she gets "glutened" etc. I guess it is considered a disability because it limits her ability to eat. Seems a little strange though. But I would rather have some sort of paper work in writing just in case she ends up having problems as time goes on with the schools etc.