On April 30, 2017 during our PACS1 Family gathering we were so thankful to have Dr. Wendy Chung join us for a mini-conference. Dr. Chung is a geneticist from Columbia University in NYC. She works with Simons VIP to provide families access to research opportunities, support and information.
Initially, Simons VIP focused on certain copy number variants associated with autism. They have expanded their research to include a wider variety of genetic events that cause neurodevelopmental disorders, (like PACS1). The main goal of Simons VIP is to help provide treatment and care by identifying the genes that cause medical, cognitive and intellectual disabilities.
When I look at this photo, I remember Abby telling her kindergarten class that her new sister was in the hospital (again) but she was going to be home soon.
When I look at this photo, I remember Abby telling her first grade class that there was nothing wrong with her sister. That Bridget just threw up a lot so if you want to be near her make sure you are not wearing nice clothing. White would be a good choice because then you can use bleach. Continue reading
It’s the last day of school. We have thanked the administrators and secretaries for the year-long efforts to keep the lights on, the programs running and balance the well-being of their staff, their parents and their students.
We have thanked our teachers and support personnel for giving our children the foundation of a fabulous education, the emotional support to get through 2nd period and how to maintain their balance on the beam. They have received holiday presents, Valentines, and according to Bridget ate her cupcakes.
We have thanked the office staff and the nursing staff who healed the boo-boo and let our children call home when they needed. We have remembered them on teacher appreciation day, administrative professional day and on nurses week.
There are a few groups we often forget to show our appreciation. Continue reading
Dear Special Needs Dad,
I see you.
I see you in the NICU scared out of your wits but holding it together for your partner.
I see you in the waiting rooms, rarely speaking but always listening. Continue reading