U.C. Davis M.I.N.D. Institute
Our trip to the Mind Institute at U.C. Davis in Sacramento, California was something that we really needed to put all of our questions and uncertainty at ease. We had wanted a doctor to look at our children and tell us that we were really doing a good job, that we were doing all the right things, teaching the kids what they were able to learn, pushing them as hard as we could without frustrating them. We wanted to know about the medications that they were on and if they were worth keeping them on things that we weren't seeing a whole lot of changes with. We wanted to feel comfortable in their office and not worry about people staring, or having to constantly be getting up to make sure the kids weren't tearing the place to shreds and having to apologize a million times for their behavior.
We wanted to meet with someone who knew alot about Fragile X Syndrome, the sensory issues that drive these children, the way that they can function on little to no sleep. We wanted someone who understood what we were dealing with, the stress, anxiety, exhaustion that goes into one day with these kids. We wanted someone who would not look at us with sympathy, a blank stare or complete terror when we asked questions about the aggression, tantrums and how to work through them. We wanted someone who understood that we didn't want them to miraculously fix our children but to give us tools to work with them to make our home life more managable.
We found those people at the Mind Institute. The minute you walked into the place you were greeted with a smile, it was relaxed, calm and friendly. There we were, three generations of FXS carriers, mothers, fathers, children, grandparents and great grandparents, we just about took up the entire waiting area. The staff were excited that they had all of us to study and research and we were grateful that they wanted all of us. Though I have to admit that I was unsure the whole five days they had us crammed into clinics and studies would be enough to understand the whole picture. Our itineraries and minds were full! They had staff that asked the kids what they wanted to do, talked to them like the people that they are at a level they were capable of understanding. They set us all at ease. Even Zach, who is the most sensory driven of all three of our children, was calm and cooperative. In fact for the first time in a very long time he was not overly sensory in a completely new environment, without structure, routine or comforts of home that he is use to and demands.
We saw a whole team of specialists, who were amazing at the approaches and ways they had with all of us. We met the most incredible people there, we have a picture page of some of them. Dr. Hagerman is amazing, we learned so much from her and her approach while we were there. The other specialists gave us an abundance of suggestions and commented on how high functioning the children were, how well they were doing. We learned alot about ourselves, and what we needed to do to survive in a house with these three children. We not only learned what we were doing right but what we were doing wrong and how to correct it. We are unique in that we have three children with Fragile X Syndrome and our family dynamic is very different from those who have one or two children affected with FXS. We learned that we were dealing with alot more than we thought and that both boys fell under the Autism spectrum as well as FXS. Zachary has some psychotic issues and as we knew is very sensory driven, where his identical twin brother, has completely separate issues and doesn't appear to be as severely affected by FXS as Zach. Connor was so cooperative, he did an MRI without being put to sleep and was very successful. Taizsia also did an MRI awake and with Tasks! She really liked the attention she got and cooperated fully with all the Dr's and staff. She is not as affected by Fragile X as the boys but has alot of anxiety issues and has very high behavioral issues. She often is the ring leader of the aggression at home.
They encouraged us to stop using the medications our children were on aside from the melatonin for sleeping and try other drugs for Zach. Connor is only on Melatonin and Asthma meds now. Taizsia, we are in the process of figuring out as she has anxiety, depression and epilepsy as well as FXS. The doctors gave us strategies to try to help with some of the behavior issues and we have incorporated alot of those into our home already and have noticed big changes. They also encouraged us to incorporate speech and language therapy three days a week for all of the children, as they need it and most of the specialists agreed that it would help with alot of the behavior issues we were having. We are trying to set this up now.
We were all treated with respect and came out of there feeling like we had been understood at last. I would encourage anyone who can get funding or afford to go to the M.I.N.D. Institute to do it. You will not be disappointed. Unfortunately in Canada right now, though I am hopeful for the future, we do not have any Fragile X Specialists that see children in Clinic, though Dr. Carlo Paribello in Toronto is in the process of having a clinic at the Sick Children's Hospital that will see teens with FXS. Hopefully this will encourage more FXS specialists to come to Canada and see people of all ages with FXS. We thank all the staff at the M.I.N.D. Institute from the bottom of our hearts for all the support, kindness, knowledge and encouragement they gave to us during this visit and what we took away from each one of them was priceless to us.
You can contact Dr. Hagerman on the National Fragile X Foundation Website at www.fragilex.ca and see some of her work there as well as at the M.I.N.D. Institute website by logging onto http://www.ucdmc.ucdavis.edu/mindinstitute
You can read more about our trip and what we learned in our book, as well as some of the strategies we are using at home and school with the children.