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Asking for Help is Self-Awareness Skill - by Chandler Isom

Hello! My name is Chandler Isom. I am 24 years old, and I have mosaic Turner syndrome (TS). I was diagnosed at 18 months old. I am a daughter, friend, teacher/instructional paraprofessional, and occasional dancer. I graduated a little over a year ago with my degree in Early Childhood Education. I share my story in hopes to reach parents or young girls who may be scared (or even terrified) of their future with TS.

Like many with TS, I grew up going to the doctors often. There was a ton of bloodwork, bone scans, ten years of growth hormone shots, etc. School was very difficult for me, math especially. I was on an IEP (individualized education plan) through high school for an extended time and received extra support in math.

Those days were so overwhelming and painful; it felt like it would never get better, but thankfully it did. Currently, I am healthy and feel great! I keep up with my appointments regularly to stay healthy. I am very grateful to say I graduated Magna Cum Laude from my university. I now work with a beautiful group of Kindergartner and Fourth grade students (and amazing co-workers).

I say this often, but I never thought I would end up at this place in my life. Sometimes, I have to actually remind myself all of it is real and it’s not just going to disappear. I will never be able to properly thank my family, friends, doctors, nurses, and teachers who made my life possible today. They have dried so many tears, breathed through scary or painful medical procedures with me, and practiced driving an endless number of hours with me.

TS will always be a part of me, and I am grateful. TS is a part of what makes me, me! The intensity of it has been turned down significantly, though. There are now things related to TS I have learned to cope with. I still get bloodwork done and have appointments regularly, but it is way easier to manage.

Google maps is my lifeline and I turn it on as a backup nearly every day. I get places early because goodness knows I will probably miss a turn (or a ton). My friends and family have learned to never give me purely verbal directions because my low visual-spatial acuity cannot handle it!  All these little things are now just a part of my life. The key thing is that it is doable.

I wanted to end with a few pieces of advice for little girls with TS:  advocate for yourself with your teachers and never be afraid to say you need help. Asking for help is a skill in self-awareness. Turn on Google maps, even when you think you will be fine. Try to leave a little extra time on your commute in case you miss a turn. Park in the back if you are like me and always park crooked. When looking for friends, find those that will love you for you and all your quirks. I am beyond appreciative of how my friends are all there for me. They are the kind of friends who at the magnificent (but incredibly crowded) Taylor Swift concert in a HUGE stadium will step in front of you without hesitation, take your hand, and lead you to your seats. Not because you are incapable, but rather because they don’t want you to be stressed or overwhelmed. And let’s be honest, If I were to lead us to our seats, we may have never seen that concert, haha.

There was a two percent chance you would be here on earth. You are a literal miracle and are meant to be here. Take it one day at a time. Butterflies were not made in a day.


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