I did it!!

I sent the email to her doctor to request info regarding the connection between NF1 and learning disabilities.  It took me a while to write it.  You are probably thinking I am being irrational.  When I write an email, such as this, I would compose it like a letter, with an opening sentence/paragraph, before stating my request. 

How would I open this email:

Hi Dr. X:  Thank you for meeting with us on 20 April...

I can't thank him for that...thank him for this diagnosis, it just seems odd.  I know he didn't do anything to make our daughter have this, no one did.  Just a random fluke when her genetic code was being written.  But still.

So I just cut to the chase and asked him for the letter, of course I was pleasant and thankful. 

I am going to take this opportunity though to introduce NF to the school by taking a fact sheet.  From what I've read thus far on NF, it is the most diagnosed rare disease and is even more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's disease combined. 

Denial

Well, I seem to be in denial.  I was thinking about reaching out to my daughters NF doctor to ask for a note for school.  She is going to be re-evaluated for her IEP (Individualized Education Program) in the coming weeks, she has been doing so well in school this year (most recent report card straight A's!!) that the special education teachers are going to recommend taking away some of her services.  She has been receiving help since the 2nd grade...long before the NF1 diagnosis.  Apparently learning disabilities are linked to NF.  She is behind grade level in reading, which naturally affects other subjects. 

Even before the NF1 diagnosis, I wanted the teachers to keep her at the same level of help for the 9th grade because the transition from middle school to high school could be stressful without the added changes.  I simply didn't want them to pull the carpet out from under her.  Now with this new knowledge of learning disabilities associated with NF, I think a note from the doctor would be nice to have.  But this raises a couple issues for me...

1)  Do I tell the school of her diagnosis?

2)  Requesting the note from the doctor makes this far more real...not having any troubling NF1 symptoms, other than the spots, is helping me to stay in denial.  Geez, I would love to be able to stay in this denial my whole life.  That would mean NF1 would never progress in her!!

I think the rational me is going to win out here though, but only for the motive of getting them [the school] to do what I want.  I'm looking at this note as my ammunition to keep her at the current level of help.  Kind of like I'm taking advantage of the NF1 diagnosis.  I guess that's not a bad thing, have you ever seen the slogan, "I have NF, NF doesn't have me."?