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.

Sweet mother’s day picture 1st grade

Be Organized

I have been told that experience is the best teacher and I have benefited from others who have gone before me. The best lesson I learned was from another special needs parent; she said to invest in a good filling cabinet and create a system to log and organize everything. She was so right. This cabinet houses everything: IEPs, medical information, etc… being organized is huge. Make copies of EVERYTHING. Finally, keep a separate folder with current information including diagnosis, test data, contact info for their care team, etc.

Make the best of it

Our daughter is making progress and we are extremely proud of her. One of my proudest moments (and conflicted, too) was watching her this year on her high school volleyball team. She’s not a great player but she tries very hard. Instead of splitting the girls up into varsity and JV teams, the coach placed all 16 girls on one team. Teams only have 6 girls playing at a time so, my daughter was going to be subjected to some substantial bench time (we had no idea just how much). She played the last 2 minutes of the last set of her first match and she did not do well. Another 5 games and 8 practices passed before she was on the game court again. Instead of sitting on the bench pouting, she stood behind the bench, smiling and cheering her team on throughout each of these games. She did this the entire season; she cheered when her team won and lost. In the end, she played less than 10 minutes the entire season. Instead of pouting and complaining like other girls did, she chose to make the best of it by showing her team spirit and integrity. I mentioned it was a conflicted time for me because it was painful to watch my daughter work so hard and not be played. I asked my daughter if she wanted me to talk to the coach and she emphatically answered “NO WAY!” It was not until I watched my daughter on the court cheering that I realized that this was not about playing, but about sportsmanship and making good of a bad situation.

At the end of the day, rather than treating the diagnosis (no cure), we chose to address the symptoms. This has included occupational therapy for several years to help her fine and gross motor skills and speech therapy since she was three. My daughter attended our public school Special Day Class for kids with moderate to severe learning disabilities from 2nd through 8th grade and is now in high school. She has faced great challenge, but also has had great success. Now, 10+ years later, I have a lovely teenage daughter with Trisomy X. She has advanced academically and is now in college prep courses (with assistance), plays on her high school volleyball team, is learning to drive and in most ways lives a relatively typical life.

Caitlyn, 16, has been diagnosed with Trisomy X; this is her story…

I was diagnosed with Trisomy X when I was 5 years old. I remember when my parents told me that I thought it meant I would be some sort of superhero, and that it might help me deal with bullies. Unfortunately, my “superpowers” gave me learning challenges and they definitely did not help me with bullies. I have always been taller than the other kids and have trouble speaking clearly. I often feel like I don’t fit in and I am a slow learner (common issues with Trisomy X). I think I got a double dose of this since my parents each had learning challenges, too.

I started school in a normal classroom, but, by 2nd Grade, I had to change schools and move into a Special Day Class with other kids that had moderate to severe learning disabilities. Learning to read was really hard for me. I had severe Apraxia and could not get my mouth (or even my brain!) to say the words, which made reading them very hard. Schoolwork was much harder than it should have been. Soon I was the tallest kid at school and taller than some of the teachers! This started the other kids bullying me. I didn’t have the verbal skills to deal with them, so I just took it.

School days…

Middle school was the worst! I continued in a Special Day Class for all subjects except gym. I really wanted to learn science in a regular class because it was a subject I loved. So, my mom talked to the school and I transferred to a mainstream science classroom. The school offered me a few accommodations (extra time to complete tests, front row seating and simplified reading materials) and I loved this class! Unfortunately, I did not like my other mainstream class at all…gym. During the summer before middle school, I grew six inches and now stood (awkwardly) 5’10” at just eleven years old. It’s common for girls with Trisomy X to have low muscle tone and to have difficulty running. Our middle school gym program was extremely focused on running. The teacher’s mantra was “everyone runs, every day”. I was always the last person to finish the laps. It was HORRIBLE.

In the middle of 6th grade I was diagnosed with Scoliosis and was given the choice of wearing the Boston Brace that may help straighten my back or have major surgery that would permanently fix the problem. Of course, I chose the brace. I felt like a monster as I stiffly maneuvered around the school. I could not easily reach my lower locker, tie my shoes or even navigate the tight hallways. The bullying increased. I remember in 7th grade I was being bullied, relentlessly, by a boy in 8th grade. He was mean to everyone. Even though I told the teachers many times (and my parents talked to the school) not much was done about him. I spent most of middle school being picked-on by bullies.

By the beginning of 8th grade it became apparent that the back brace was not working. The good news was I got to stop wearing it; bad news was I had to have the surgery. I was also starting to find the Special Ed classes too easy. My parents decided to keep me in Special Day Class through 8th grade because I would be out for a couple of months recovering from surgery. Unfortunately, the teacher assigned to teach us math was the worst. I did not learn any new math in 8th grade.

By the end of middle school I developed a love for reading, creating writing and learned how to self-advocate. I also learned how to swear and developed a dark side. Unfortunately, I did not learn Geometry, History or pre-Algebra at all; reading was at a 5th grade level and I had no foreign language classes.

We looked at a lot of different high schools. The ESE program at my local high school singled out the kids that needed the most help and would “co-teach” within the regular classroom. I didn’t want my classmates to see me off to the side of the classroom in a group of slow kids being taught by a special teacher.

I’m working around my challenges

I chose to go to a small charter school. That was both scary and exciting because they had no special education program and offered the same accommodations to all students. This includes teacher office hours, extra time on tests, a mentor, access to a resource lab and peer tutoring.

By the end of 9th grade I completed Physics, Algebra 1, History and Literature (with a C or above in each class). I played JV Volleyball and participated in two musical theater plays. I found a great group of “geeky” friends and loved going to school. Within a year, I had completed Geometry, Biology, World History and World Literature again with a C average. I played on the JV volleyball team again and also started to learn to shoot rifles. I hope that will help with a career in law enforcement.

I am currently in 11th grade. I am taking AP English, AP US History, Spanish 2, Algebra 2 and College Readiness. I made the Varsity Volleyball team (although I hardly got to play!) and am learning to drive. I still get speech therapy once a week and I’m still behind on my reading, but I’ve found ways to work around my challenges: audio books help with long reading assignments, I take ADD meds to help with classroom distractions (ADD is common with Trisomy X), I’m a frequent visitor at teacher office hours and I have become an expert in advocating for myself.

If your daughter has Trisomy X, my advice would be to stay calm and support her when she needs it. There will be challenges, but this is the case even with girls who do not have an extra x chromosome. Teach her how to advocate for herself, find tools to work around her disabilities and encourage her to become her own super-hero.

PSN: Mitzi & Caitylyn, thank you so much for sharing your experiences and for inspiring us with the lessons you have learned.

Photos courtesy Mitzi McGilvray

Read More: Real Moms Share

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This post originally appeared on our January/February 2015 Magazine

Real Mom’s Share: Mitzi & Caitlyn

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