Real Mom’s Share: Mitzi & Caitlyn
Mitzi McGilvray and her daughter, Caitlyn, contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter who has been diagnosed with Trisomy X. See what she said…
Prior to having kids, I liked to move at a very fast pace. I liked to get a lot of things done…I even liked knowing that I could wait until the last minute sometimes, and still get stuff done. But, one thing I have learned through this process is that you can’t do this when you have a child with special needs. Our daughter does not work at a fast pace. I had to learn to plan my time better, to never leave anything to the last minute and resist my urge to rush her. But I’m getting ahead of myself…
By the time we celebrated my daughter’s first birthday,
I knew she was not a typical toddler. She lagged behind on every key milestone: rolling; sitting; crawling and talking. These delays were not significant, but I did bring it to the attention of our pediatrician. I was quickly told not to worry and reminded that “kids developed at different rates”.
By 18 months, all first year milestones were met except speech, which became more and more delayed. This, coupled with an unexplained seizure, started us on our journey for answers. First step: a change of primary care pediatricians. Between the ages of 1.5 and 5, my daughter was subjected to a battery of tests: an EEG; two MRI’s; a neurological evaluation; full OT evaluation and numerous speech evaluations.
The symptoms seemed to fit
The diagnoses started rolling in: Sensory Integration Dysfunction, Global Gross and Fine motor delays, Apraxia, low IQ, possible autism spectrum disorder, and potential cerebral palsy. Our fourth pediatrician (we fired the previous 3!) decided to run a test for Fragile X and we finally learned the truth: she had 3 X chromosomes. I was told that very little information existed but these girls were often very tall, had speech problems and typically had developmental, and cognitive challenges. The symptoms seemed to fit. When I asked for more information, I was given a poor photocopy of a study that described Trisomy X girls as having mental illness, mental retardation and very poor lifetime outcomes. I had to find out more.
After doing much research and joining with other parents of similar girls, I quickly learned that the original information we’d been given by our pediatrician was likely skewed and only included a very small sample of girls. Today, however, there are more resources out there that can assist you. There is an organization called AXYS (www.genetic.org). It is an association for X/Y chromosome variations. They provide numerous resources including conferences, forums and information about studies and research. There is also a private Facebook group for Trisomy X and that has been enormously helpful. I would tell any parent who finds out that their daughter has Trisomy X to do their homework. Remember: 1 in 1000 females have Trisomy X. While many women go their entire life with an extra X chromosome and never know, the symptoms can range from barely noticeable to severe. But, most of the girls DO have speech issues. Be aware of the possible challenges and get your daughter help when she needs it. Be proactive and build a communicative relationship with her school and caregivers. Most of all, teach your daughter to self-advocate. This will give her lifelong tools to help herself.
(Continued on page 2)
Subscribe to our free email newsletter now to access our free magazine!