Friday, February 26, 2010


dear little leah,

they say i'm supposed to be your advocate. your no. 1 advocate at that. i'm supposed to support you. defend you. plead in your behalf.

but how do i advocate for you when i'm not even sure what it is i'm supposed to advocate?

how do i fight for what you need when i'm not even sure what it is you need in the first place?

today daddy and i met with some people from our school district to figure out where you will be attending school and what kinds of services you will receive for the next calendar year.

i've been told that this first meeting {hereafter referred to as IEP}, the one where you turn three, is one of the most {if not THE most} important. i've been told that this first meeting can determine what services you will get not only for the next year, but for many years after that. i've been told that it's easiest to obtain services now, but oh so hard to add on to them later. i've been told that the people from school districts aren't going to want to pay for any of your services and so i'm going to have to fight, tooth and nail, for the things i think you deserve and need.

"don't be afraid to be aggressive," they said.

"make your demands clear," they urged.

so i went prepared. and i brought daddy along just in case i buckled. i brought all your reports. all your records. all the letters written in your behalf. i wrote up my own summary of you - your likes and dislikes, your strengths and weaknesses, your immediate needs, your long-term needs, a history of rett syndrome, services i think would help you, goals i felt were appropriate and achievable.

i had some help. a few other rett moms offered support and some brilliant ones posted tips on the internet. who'da thunk? other moms i know offered tips like putting your picture on the forms so people aren't making decisions about words on paper, but on an actual person {a cute one at that!}.

like i said, i went prepared.

and you know what? i think i opened my binder twice. and not even because i needed to.

the people in our district were wonderful. and i feel truly, completely blessed, once again, to be where we are.

they wrote goals with you in mind, knowing you are a bit different than others they have worked with before. they wrote goals that offer room to grow, not knowing what will be best for you. they suggested technologies that can be adapted to you. services that can be molded around you. programs that will fit your needs.

we didn't opt for the most technologically saavy program. i think it's safe to say you wouldn't enjoy being tied down to technology, literally. but we didn't low-ball it either. i think we found a pretty good medium that will make everyone happy...especially you.

daddy and i left the meeting feeling so good. we went in expecting to fight {nicely, of course} and came out knowing we are all advocates for you. we are all fighting for you and your education and learning and growth. we are all on the same team. team leah.

i like being on your team.

i'm glad others like it too.

goooooooooooooooooooo team!

i love you, leah beah.



  1. Leah is such a cutie! I don't know how I first came across your blog, but I'm so glad I did. It's always nice to follow the journeys of other families facing a Rett diagnosis.

    It's wonderful that Leah has such a supportive team working with her. What a relief that will be to know everyone is working with her best interest in mind.