Wednesday, September 18, 2013

it takes baby steps

im about an hour out from avery's latest iep addendum meeting.  one i called on purpose-out of turn-off schedule. with all my iep experience, i surprised myself calling the meeting.  no one likes an iep.  no one.  they are typically terrible: you sit on one side of a huge table in a decrepit conference room and listen while professionals tell you where you child is lacking, what she cant do, what she hasnt made progress on, that they are STILL working on colors in 2nd grade, etc.  it is terrible.  terrible. 

so why would i ask to do this?  ieps are scheduled on an annual basis and for avery they happen in March or April.  the end of the school year.  not the best timing.  so over the summer i emailed the principal and asked for an iep at the beginning of the year. i asked because i wanted to explore the options of getting avery some more time in the general ed classroom.  last spring (basically from Jan-June) she spent about 20 min on tues and thurs in the regular ed first grade class.  they usually had her go in and "read" a story for the class using her step by step button.  it was a good baby step but not true inclusion.

so it took me some time but after going to the irsf conference in June and hearing more about how well some girls with rett are included in regular ed settings, i was ready to push a little.  our principal agreed to get something on the calendar as soon as possible. in the meantime, at back to school night i found out that the same teacher that had avery come to her 1st grade reg ed class last year is now teaching 2nd grade.  what a win.  i knew she would be up for having avery again.  i hoped.

we met today. in avery's SDC classroom.  the gen ed teacher walked in along with averys new SLP and her OT.  Her SDC teacher was there and we were joined by the principal. we are so lucky to have the principal we have.  she has a background in special ed and she gets it.  she knows the kids so when she comes to your iep, she has something to offer.  i ran into her in the office on my way in and she seemed a little grumpy so i wasnt sure what to expect.  the meeting started off with asking me what i want the outcome to be. who knows what i said.  i blabbed on and on about how smart she is and how in there she is and how is is quite possible that in 3-5 years she could be on some new meds that might change things a ton, blah blah blah. 

it seemed things would not be going quite my way b/c there was sort of this focus on "how will we accommodate" and "extra time" and "contract hours".  but then i said something like "look, i dont really care how its done but i just know its a win win situation and I just want her exposed and i want her talking with some typical peers with her device and i want her to have friends and i want her to learn what all the other kids are learning whether or not she can show us what she has learned and i want her succeed but if she doesnt then she doesnt" and the principal cut me off with something like "she cant really fail in this situation" and then something awesome like "they can work in small groups and chat about a book they are reading" and "even if she doesnt look like she is involved she is ABSORBING it" and at least four other really cool things like that.  Basically what i have been saying all along-just put it in her head-dont expect it to come out!just know it is going in! And she gets that. 

so the outcome was this: i will make a brief presentation with her sdc teacher (while the principal covers the sdc class!) to the 2nd grade class (7 of the students in the class know her from her time in this teachers class last year) about Avery and Rett syndrome and then after that she will be heading to the regular 2nd grade four days a week for at least 30 minutes during instructional time with the goal being at least an hour on each of those four days. the principal also said she wants to make sure avery has a permanent spot in the class so she isnt lugging in all this stuff everyday. i cried. happy tears. i know it doesnt seem like much, but it is a lot.  there was a lot of "we arent going to pull her out at her first squawk" and "we will give her pently of time to adjust" and "what sensory items will she need" and im pumped.

oh and her new SLP?  just out of grad school and get this, she has worked with a girl with rett before!
it is happening.  this is just the beginning. 

Monday, September 16, 2013

how a simple etsy transaction made my month

i just hosted a bridal shower for my soon to be sister in law with my other two sisters in law.  we had a lot of help from a good friend of mine and it was all coming together nicely. because the happy couple had met at a place called the horseshoe and our theme was a little rustic, i decided to try to find some kind of horseshoe decoration for the tables.  i found a great etsy shop called LuckyGoatDesigns.  she had these adorable pony horseshoes with tags that could be custom stamped with anything really.  we chose their last name, est 2013, lucky in love. right after ordering i started looking at her other items (pendants, rings, etc) and saw she made running charms too. basically a little washer stamped with a message that can be tied to your shoelaces. some examples had messages like "run mama! 13.1" or "run sara! 26.2".  so cute.  then i saw the boston ones. in the description it said this:

This running charm was inspired by awesome customer, Lyndsay, who was searching for a way to pay tribute to the Boston Marathon tragedy.

This Boston Marathon running charm will say "Boston 2013" and a heart symbol. All proceeds will go towards the charity "The One Fund Boston" to support the marathon bombing victims. 

i immediately ordered two. one for me and one for lee ann (who had joined me in boston, and trained so hard and raised so much). i sent a note to the shop owner, beth, and shared with her that i had been there and mentioned that i ran on team rett and that my daughter has rett syndrome.  i also shared that i would be going back again in 2014 to finish this time.

a few days later i found an envelope from her in the mail.  inside were my two boston charms. and another one that simply said "team rett 2014".  she also added a note:
i may or may not have cried.