Turner Syndrome Issues

Let’s lay our cards on the table: if you treat your daughter like an invalid, she will live like an invalid all her life. She may be small, she may be fragile and she may struggle. But she has a good shot at plenty of good living, as long as you help her to grow towards independence and sound decision-making.

Here are the basic differences between your daughter with Turner Syndrome and other girls the same age:

  • Your daughter needs more frequent trips to the doctor’s for well-child check-ups and for specific medical conditions.
  • Your daughter probably has to take growth hormones and endure a schedule of shots because of her short stature. She may have started taking estrogen at an early age.
  • She may be having difficulty with motor coordination, visual spatial intelligence, and social interaction.
  • She may be struggling with math, but have an advanced vocabulary for her age.
  • She might look at little different: in addition to her short stature, she may have edema or a webbed neck or a weird hairline.

What Parents Can Do

Living Tall: Focusing on abilities rather than disabilities of Turner children.Granted that the world isn’t well organized for people of short stature. And that growth hormone shots and estrogen therapy are annoying and no one looks forward to them. But many girls are on the short side, and lots of diabetic kids have shots several times a day. Not everyone is gifted with visual spatial intelligence, but most manage to live “normal” lives.

What’s the secret ingredient? A positive attitude.

Your focus should be on modeling the positive attitude that your child should have. And you should insist on the same from your daughter. Let’s look at a story to illustrate why love may not be enough.

Jenny Smith is short. Even with growth hormones, she grew to only four feet, six inches. Her loving parents made sure that everything she needed was within reach. Her toys and books were kept on low shelves. Even at school, coat hooks, desk, chairs, and computer furniture were lowered for her. At home, she had a specially built bathroom sink. Her family home was like a Hobbit house!

Then Jenny grew up, went off to college, and the world was a different place. No one placed items on the lower shelves at the grocery store or the drug store. The college library had items on shelves she couldn’t reach . . .

Jenny’s parents meant well, but the adaptations they insisted on weren’t enough to prepare Jenny for her life. They could no longer run over to fetch things for her or lower her shelves. What her parents should have done from a very early age was to help Jenny cope with the world she’d be living in as an adult. Sometimes, instead of putting the book on the lowest shelf, they should have let her climb up to get the book.

Of course, this is a metaphor for many other abilities that Turner Syndrome girls will have to develop through their lives, beginning in childhood.

What Girls Can Do

If you’re a young girl with Turner Syndrome, here’s what you can do to develop independence and prepare for adulthood:

  • Find out everything you can about visual spatial intelligence. Take charge and ask for help.
  • Make a list of all the things you’re good at. Ask your teacher to help you. Write a journal about your successes.
  • Ask your parents to find articles about nonverbal learning disabilities that you can share with your teacher.
  • If making friends and doing things with other girls is difficult for you, invite one of the nicer girls to your home and ask her lots of questions about getting along.
  • Go on the Internet and read about Turner Syndrome. You might even find a pen pal who has Turner’s.
  • Tell your teacher and classmates what it’s like to have Turner Syndrome and how it feels to take estrogen or growth hormones. You’ll be surprised at how interested they are.
  • Every week, try to do one new thing without help from an adult. Remind adults that you’re learning to do things for yourself.
  • Get plenty of exercise. You may not make the soccer team, but nothing’s stopping you from swimming, shooting hoops in the driveway, or walking the dog.

Resources

Turner Syndrome Society — United States. (nd). Resources and Research: FAQs. Retrieved November 13, 2001 from http://www.turnersyndrome.org/resource/faq.html.

Turner Syndrome Society — United States. (nd). Turner Syndrome Society of the US National Research Study for Young Girls. Retrieved November 13, 2001 from http://www.turnersyndrome.org/resource/toddlers.html.