July 3, 2014 § 1 Comment

I am writing from my hotel room in Anaheim, California. I am here with my family and 400 other families from around the world at the Williams Syndrome National Convention.

It is truly the happiest, friendliest place on Earth. I love the joy that just radiates from ALL people here and when my Facebook world collides with real world it’s magic. It is awesome to see so many beautiful Williams Syndrome smiles in one place. It is rare that we see any in our day to day lives and if we do it’s in waiting rooms in Boston hospitals to see specialists. But here my daughter goes to bed saying “I just love that girl, she looks just like me, she has blue eyes like me and curly hair like me! I feel like I’m looking at a younger me!” Imagine almost never seeing anyone who was quite like yourself….and then seeing hundreds who look like just like you!! It feels like home.

It feels like home because when we are here do not have to explain. We do not feel like we are ever being judged. We just feel “embraced.” Oh! And there’s a lot of actual embracing – hugs from everyone – it is glorious!

On top of the Joy of connecting with our WS family, we get to learn a lot. It is so beneficial to me in helping my daughter and also to me professionally. When else can you earn PDPs on vacation? I already learned a ton today! I feel blessed.

Off to hopefully sleep well and get over the jet lag.

I ❤️the WSA




June 17, 2014 § 1 Comment

Main Entry: in·clu·sion
Pronunciation: \in-ˈklü-zhən\
Function: noun
Etymology: Latin inclusion-, inclusio, from includere
Date: 1600
1 : the act of including : the state of being included 2 : something that is included: as a : a gaseous, liquid, or solid foreign body enclosed in a mass (as of a mineral) b : a passive usually temporary product of cell activity (as a starch grain) within the cytoplasm or nucleus 3 : a relation between two classes that exists when all members of the first are also members of the second — compare membership 3 4 : the act or practice of including students with disabilities in regular school classes
— in·clu·sion·ary \in-ˈklü-zhə-ner-ē\ adjective

Inclusion is maybe just not a big enough word anymore. Definition #4 is how many schools actually practice – prevailing attitude – “if the student goes to lunch, art and gym then we are practicing inclusion.”

It makes me want to whack my head off a wall!

I honestly don’t even think IEPs are helpful anymore – I don’t – it feels like a bunch of legal mumbo jumbo that can sometimes actually restrict kids more than help them grow! I don’t think they should be called IEPs but rather IAPs – Individualized Accessibility Plan. The pressure should NOT be on the child to conform and become more like everyone else! The pressure SHOULD in fact be on the adults/educators to find a way to embrace that child’s differences and help them shine. When did the word “special” become synonymous with the word bad in the special ed world? Special to me is different, beautiful and extraordinary – but NOT bad. Why do the schools push down that beauty?

If you haven’t noticed this is a bit of a rant tonight. There is so much behind it that I can’t publicly disclose but I wish I could and my heart races when I consider doing it. (I will say it’s in relation to my daughters education.)

I believe that if students are properly accommodated they can access the general curriculum in a way that is appropriate for them.

Teachers, Administrators, Therapist – stop focusing on what the kids can’t do and help them start building on what they can do in a way that elevates the good of everyone, including the general education students who are “included” in the lives of our special education students.

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