A Mother's Fight for Her Daughter's Education
My daughter, Missy, is a sweet 11-year-old who loves to read and help animals. She wants to be a veterinarian when she grows up. Since birth, Missy was always in and out of doctors’ oﬃces due to her weak immune system, constant ear infections, and growth development delays.
Doctors were not able to ﬁnd anything wrong, but I never gave up. After constant visits with doctors throughout the years and test after test, we ﬁnally found answers. We met with a new doctor, and she ordered genetic testing.
In the summer of 2017, our questions were answered. Missy was diagnosed with Mosaic Turner Syndrome. Our journey didn’t stop there. We were just getting started! We met with several specialists, and I’m happy and blessed to say, her heart and kidneys are in good condition.
Missy is seeing an endocrinologist to help with her growth; she takes nightly growth hormone injections and has already grown 5 inches. The more I read about TS, the more I realized this syndrome goes deeper than the medical diﬃculties. I started to think that her high stress and anxiety may be related to Turner syndrome.
Everything began to make sense. Why is she so scared to be in public? Why is she so anxious and stressed all the time? In the past, I always told everyone, “oh she’s just really shy,” or I would speak for her and found myself starting conversations on her behalf when meeting others her age.
My mother, who works with children and young adults with autism, would always mention I should get her tested. She felt Missy was somewhere on the spectrum, but not sure how. So, after long deliberation, I decided to meet with a developmental doctor. He examined Missy and he agreed. He made several recommendations. He recommended Missy receive psycho educational and psychological testing at school; and, meet with a psychologist for her anxiety; and meet with an occupational therapist for her cognitive and motor skill delays.
So, I started making calls and setting up appointments. Finding an occupational therapist was easy. We found a great therapist who is showing Missy strategies on how to be more productive at school and at home through mental and physical exercises.
I found my biggest hurdle where I least expected it - at school with a psychologist. This was the point when I felt at my lowest and thought I had failed. The psychologist did not understand what Turner syndrome was or how girls with TS are more likely to have high anxiety and cognitive diﬃculties.
School was also diﬃcult since Missy is an average student that earned good grades and didn’t get into any trouble. In fact, she avoided attention as much as possible from adults and her peers. Because of her anxiety, she never asked for help or advocated for herself. She was always described as a very shy and sweet girl.
The school didn’t feel the need to test, and I was rejected several times from the local screening committee, regardless of all the doctor’s recommendations. I remember being told by one of the local screening members, “If the doctors think she needs testing, why can’t they do it?” The doctors would say it was the school’s responsibility to test her, or that they could test her, but the waiting list was 2 years and our insurance wouldn’t cover it.
Throughout all this back and forth, at home Missy was continuing to have breakdowns and would often cry about how stressful her day was. She would come home crying in pain and limping because her legs and body hurt because of the growth hormone injections, and she didn’t want to get in trouble for going into the nurse’s oﬃce.
This is when I decided I had had enough! I was not going to give up. I reached out to the superintendent, the principal, and the school board. I wrote email after email, and letter after letter explaining why we needed help. Missy has a medical condition and she is to afraid to be her own advocate.
Finally, I received an email from a parent liaison requesting to meet with us. We went over all the doctor’s notes and recommendations, and she requested that the local screening committee meet with us one more time.
This time she was present at the meeting and was a true blessing! She explained why Missy needed to be tested, and demonstrated that best practices indicated that, regardless of academic intelligence, when a medical condition is present, testing should be mandatory.
They all ﬁnally agreed. I broke down in tears, and Missy began the journey of being tested. She passed all her academic testing exhibiting normal intelligence, with some minor issues in math. They observed her in class and noticed she had good eye contact and interacted with her classmates well. When it came to cognitive skills, she was below average. Her brain was working extra hard to understand assignments. Copying assignments from the board was very diﬃcult for her.
She also didn’t do well in the psychological testing. When asked questions, she would respond the way she thought she should, rather than how she was truly feeling. The social worker noticed this early on and reached out to me directly. She asked if Missy was meeting with a therapist, and I told her that she wasn’t. We hadn’t had any luck in that field, and I had put it on hold.
The social worker oﬀered to meet with Missy once a week after school to work on a program called the Coping Cat Workbook, which is a Cognitive-Behavioral Therapy program for anxious children.
Today, I can proudly say Missy has a great support system behind her. She was approved for a 504 plan at school, and she has grown physically and mentally. She is self-advocating more at school, and will occasionally order her own food at restaurants (this is still work in progress).
After all of this, all I can say is never give up! Keep ﬁghting. Don’t take no for an answer, and follow your instincts. I'm proud to be the mother of a TS Butterﬂy, and would not change a thing about this journey. I’ve learned and grown so much from this experience and I know my hard work and perseverance helped guide a path for Missy to become a productive citizen. Soon she will make it into college and be the best vet in the world.
Making Sense of 504s and IEPs by Kathy Montag, video presentation from TSSUS National Conference
Recognizing and Managing Anxiety, Depression and OCD in Children and Adolescents with Turner Syndrome by Jessica Kichler, PhD, CDE
video presentation from TSSUS National Confernece