12/07/2017

I have been asked to talk about autism and visual impairment in children. I am humbled by the complexity of children whose paths I cross in my evaluation and consultation work. Too often the focus is on one aspect of a child - for instance, his/her blindness - as a way of explaining behaviors and developing an education program. This is not true for every child and system, however, it is worth cautioning reliance on this uni-dimensional focus. The other caution is that the field of visual

11/20/2017

I have been blessed to have two wonderful daughters.  My daughter, Amy, who is 18, has special needs.  My other daughter, Shannon, who is 16 doesn’t.  Our life is different than those who don’t have a family member with special needs..  I don’t think our life is harder but just different.  I’m sure for Shannon, it can be trying to have a sister who is actually older than her act younger.  Amy has never had as many friends as Shannon.  Shannon has always had a lot of friends.  However, Amy has

11/07/2017

One of the biggest challenges I think we parents of those with USP7 face is spreading the word about our children and getting people to care enough about them as we do. Well, maybe that’s not quite realistic, because really who loves your child as much as you do?  The answer is no one, but if we could just get people on board enough to spread the message, get out and help us get things done. It makes me think, well, we need a pregnant giraffe. In case you hadn’t heard, earlier this year a small

10/23/2017

Have you ever met someone and had that instant connection? You know you're just meeting, but somehow you know they're family. That's what is was like for us, in our family, when we met all of the other USP7 families that were able to attend our first conference back in April. Up to that point I had only ever talked on the phone to Bo and Kate. I had connected with the other families on Facebook and Stephanié and I would chat sometimes on messenger, but being there together took it to another

10/16/2017

I love the game Risk. Ever play Risk? Map of the world, rolling dice, moving armies around. When you hold a whole continent, you get bonuses on your next turn. If there's more than two players you develop alliances and then hose each other later. Such an awesome game.    But when it comes to Tess, risk is not a game I want to be part of in any way. Not a fan of risk. And now that we're about to go monkeying around with her growth hormone, it turns out that there is some risk here.   The T-Bird

10/09/2017

Very touched by the stories of other USP7 families, I also decide to write a few lines to tell the story of Clara. Clara sat at 16 months and walked late (2 years), she had said "Dad" early enough, and then no longer spoke. When the 2-year-old visits the pediatrician, he tells us that following her delays, we should give her some exams. Meet at the neuropediatrician, genetic counseling, appointment at the CAMSP (Center of Action Médico social Early) where Clara starts her first sessions of