01/07/2019

There are times in all of our lives when we have to make hard decisions. Sometimes they are for ourselves and sometimes they are for our children. When your child has a rare disease we are often faced with making these hard decisions. This past December we had to make the decision to change Ella's placement in school from "Least Restrictive" to "Most Restrictive".  This is not a decision that was made lightly. Ella attended the disabilities pre-k program that is offered through our district and

11/07/2018

Noé, 7 years old, lives in Besançon, France. Noé was a very quiet baby who almost never cried. He was a full-term baby who weighed 5lbs and had difficulties drinking his bottles. When he was 9 months, we pointed out he wasn’t able to sit alone and decided first to consult a general practitioner and then a pediatrician who confirmed a severe axial hypotonia. Referred to the CAMSP (Early Medico-Social Action Center), Noé benefited from psychomotor sessions at home that helped him to acquire a

10/29/2018

If you have been following the USP7 families you know that in October many of us traveled to Las Vegas for the Foundation’s Conference in conjunction with Prader-Willi’s conference.  They were generous enough to allow us to come under their umbrella to meet and learn.  When we returned to work and people asked me with eager expectation on their faces, “How was Vegas?” It was hard to put into words a reply for them.  To me Vegas was a city of shock and awe, on so many levels. Almost everyone I

10/21/2018

“Tantrum – hit 2 students with book. Called office for support” “Ran out of my room to next door class. Called for help” “Did not attend specials. Called for help” “Ran out of the classroom” “Tantrum” Daily reports like this are increasingly the norm here. It’s hard to describe what it’s like having a child who has special needs and behavioral issues. She doesn’t want to be “bad”, she loves other children and I never think her intent is to hurt anyone. She’s doesn’t act up at home and

06/11/2018

This has been the most amazing year for Ella-Marie.  It is a year that I would have never fathomed she would have.  Like ever. Period.  Last fall she started her “Super Senior Year” which I wrote last year was a stupid name for kids that get held in special education for another year.  Little did I know that this would indeed be a Super Senior Year. The year started the same as countless others, with an IEP meeting and a disappointment.  Ella-Marie was permitted to take Art as an elective her

05/21/2018

It’s the last week of school here. Ella’s last week as a Kindergartner. I’ve always felt like Kindergarten is the last year that kids are “babies”, after that they just become big kids, even though they are really still little. I was sad with my older two when Kindergarten was over, but with Ella I have very mixed emotions. I’ve been counting down the days since after Christmas. This year has not been fantastic. In fact, a lot of the time it has been the opposite. Ella has really struggled in