Fragile X Story
Fragile X entered my life at an early age. In 1965 I was 5yrs old and I remember going to Georgia to visit my father’s family. My cousins Kenneth and Glenn who were twins and their older brother Richard were all in their teens and all had some level of intellectual impairment; their sister Jane did not. The twin’s room was upstairs and I was not allowed to go up; one foot on the stairs and they would become agitated. Back home my oldest sister Shirley had moved back to Texas with her children, David 2yrs and Mark an infant. As my nephews grew up it was realized that they had an intellectual impairment as well but like many families of the time there was always some level of denial – it was whispered that of course this was a problem on their father’s side. In my early 20’s the term “Fragile X Syndrome” was heard as tests on my nephews were performed; the tests came back positive but I didn’t know this until 6 years later.
When I became pregnant in 1986 I asked my obstetrician to test for Fragile X and he said, “It’s a little late don’t you think”, when my son Casey was born the assigned pediatrician visited me post-delivery and I asked her to test – I don’t believe she knew what it was and the tests were never performed. When Casey skipped crawling I asked for testing again but was told he was within the normal developmental range, at 1 ½ years he began to have serious, repeated ear infections and I was accused of not giving him his meds, on one visit he was very sick we were both frustrated and the doctor gave me a child behavior pamphlet. This is a doctor who had a son with Down’s Syndrome. Instead of giving up I persevered and finally found a 4th pediatrician who resolved Casey’s health issues. I hounded this doctor, he hounded the insurance company and finally I was able to get Casey a chromosomal test and diagnosed with Fragile X Syndrome at the age of 4.
It was then that the National Fragile X Association came into my life. I ordered educational materials from National and provided them to Casey’s educators. I attended my first conference in 1996 in Portland, Oregon. It was an eye-opener! That year I was also introduced to other families in North Texas who had children with Fragile X. That made a difference in my life and we hoped to one day be able to support other parents in our community. In 2006 we organized in the Texas Fragile X Association and began having events for the families. In 2011 we formed as a 501(c)3 and I served as President for 3 years and continue to serve on the board. But none of this would have happened if it hadn’t been for my experience with my son Casey.
In 1988 when Casey was 2yrs and before I had a diagnosis I walked into an Infant Intervention Center and asked for them to evaluate him; they accepted him on the spot. We had two great years there and Casey had the best therapists and educators; I was extremely lucky. He transitioned to Early Childhood and over the next 3 years he made little progress and so I had to challenge the school. They wanted to place him at a campus across town, in a special self-contained classroom without contact with regular students. I disagreed with the ARD/IEP committee but I had to ask them to wait while I finished crying uncontrollably (my usual ARD behavior) – they waited, I finished, it was painful but I never cried in an ARD again. After announcing that I wanted to review Casey’s options, his teacher, a very nice young woman, threw herself on the conference table and wept. It was a tough day for all. In the end I presented my plan and they accepted it. A month before Casey turned 7 he entered into a ½ day kindergarten program on his regular campus, after class he went to lunch with the 1st graders, then spent 20 minutes with a resource teacher before a bus took him back home. I had unwittingly forced the school to adhere to the Least Restrictive Environment principle of the Individuals with Disabilities Education Act (IDEA) and I didn’t even know what that was. Casey flourished, he began to read, he met all his goals and we had to re-ARD after 3 months to set new goals! I gambled on him and I was right – it felt good. Casey didn’t talk at that age and he had all the usual Fragile X Behaviors but the other children accepted him as he was after a few pointed questions and from day-one they all fought to be his “best friend”, in 1st grade they fought to be his helper, in subsequent years they fought to include him in anything he showed an interest in. He was invited to their parties and they attended his; he was popular. Casey attended this elementary school campus until he transitioned to middle school at 13. Nothing could have replaced what he gained from this experience.
I had seen the pitfalls of my nephew’s school experience after puberty; which was mostly negative and so over the next 5-6yrs I fought to limit Casey’s contact with regular classes. Later when he was 19-20 I did allow him to become part of the overall campus again while fighting to have him age out – it was a battle until he graduated just months shy of his 23rd birthday. Those last years in school were critical as he was exposed to work in the community and he began to socialize again; he asked to go a dance and even to the prom and he went. He matured. Finally he walked across the stage, accepted his diploma and shook hands with the officials; we were all holding our breath. I am very proud of the young man my son has become; he is confident in who he is. Today, not a month goes by that someone doesn’t comes up to us in public and say, “I went to school with Casey” or “Didn’t he go to Irving High, isn’t his name Casey?”, “I remember Casey” or my favorite “I’m Bruce, I was his best friend, remember?” Priceless.
Let’s face it looking back school was the easy part. Today we are dealing with the issue of adulthood. I always knew it would be a challenge and when he was younger I began preparing for the day he would be all my responsibility again. I went to college and received a technical degree and thought I would work maybe as a consultant but my solution has turned out different…
In 2006 I took my nephew Mark out of a county run group home where he was being warehoused and extremely over medicated. For the first time in 24yrs Mark had his own room and could keep his things and clothes that belonged to him without someone taking them; he got to participate in life and make decisions for himself. Casey got another male in the house and they have developed a close relationship. In 2007 I became a paid Companion Care provider to Mark and Casey but continued to work and I hired someone to take care of them in the evening after Casey got home from school and Mark got home from the work training center.
In 2007 Mark and David’s father died unexpectedly and I faced the responsibility for their care and for the care of their mother, my sister, who suffered from Alzheimers and Diabetes and had been diagnosed with FXTAS. I chose to put my technical degree on the shelf and just take care of the family. I helped Mark and David transition to life without their Dad and then when my sister Shirley passed in 2011 and I once again transitioned them to life without their mother.
Now David is living in his parent’s house with assistance from attendants; he has a very full life and many friends. He has an annual birthday party at a location steak house and he has 30-40 friends that attend. Mark turned 51 next this year and attends a work training center everyday; he likes music and sports. My son Casey turns 30 this year; he collects action figures and likes to spend time on EBay and YouTube; I have not had good luck finding something worthwhile for Casey to do during the day but I’m still looking.
Mark and Casey volunteer with the Texas Fragile X Association whenever they get the chance. Just living the FX life!