Wednesday, October 2, 2013

Are you parent of a child with trich? Check out how you can make some noise!

From TLC:

Top 5 Ways for Parents to MAKE SOME NOISE

by Wendy, parent of a beautiful trichster
As parents were are tireless advocates for our children.  We spend hours coaching sports teams, volunteering at school, tussling with the PTA, finding just the right camp and DRIVING for days on end.  It’s time to put some of this energy into MAKING SOME NOISE about Trichotillomania.
I am a mom of a 10-year old with Trich.  Like most of us, I was horrified, befuddled and helpless when she started pulling.  Trich was a complete unknown to me.  I was embarrassed and freaked out.  But, now it’s been over a year since she started.  My daughter is managing.  As a family we have worked hard to understand Trich.  We now reach out to our friends, teachers and health care providers to educate them about Trich.  My daughter feels empowered by her knowledge, less burdened by shame since we try to talk openly with others and supported by her community.  Now it’s your turn to MAKE SOME PARENT NOISE!
1. Be Rowdy at School!  
  • At the beginning of the school year talk to your child’s principal, teacher, nurse and school psychologist about Trich.  Provide them with the TLC materials and the TLC website.  DO THIS EVERY YEAR!  Update them on new findings.
  • If necessary establish a formal agreement with the school for accommodations for your child.  My daughter gets to wear a hat or gloves and have fidgets with her in the classroom.   REVIEW THIS EVERY YEAR.
2.       Be Disruptive in the Classroom!
  • Give a presentation on Trich to your child’s classroom.  Leave lots of room for questions.  Of course, get your child’s agreement on this, or encourage them to make a presentation on their own.  I talked to my daughter’s 3rd grade class about Trich and the kids had a ton of thoughtful questions.  Once they had a better understanding, my daughter’s pulling was not such a big deal to them.
  • Volunteer to start an anti-bullying education program at school.  My daughter’s school has implemented Project Cornerstone.  Get involved!
3. Be Heard at the Doctor’s Office!
  • Every doctor my daughter sees (I mean everyone:  pediatrician, eye doctor, dentist) receives TLC materials.  When asked “Are you familiar with Trich”, well- meaning doctors will respond:  “Well, yes… I have heard of this”.  Take this response as a “No” and start educating!!
 4. Be a Boisterous at Camp and After-School!
  • Think of the hundreds of kids that camp counselors and after-school care providers see each week!!!  When signing your kid up for programs- let the care-givers know that she has Trich.  Why mention it?  Why not!!  Think of this as an opportunity to get the word out.  Include the TLC website and materials.  Maybe you can help out another family!
5.       Be Loud and Proud!
  • Tell your friends about Trich.  Tell your family.  Post it on Facebook.  Tweet!  Throw off your own feelings of shame.  Be honest about this.  If you are ashamed or embarrassed you will only reflect this back to your kid.   When someone says to you, “What’s wrong with your kid’s hair?” say “She has Trichotillomania.  It’s a neurological disorder characterized by……”  This will (1) get them to shut-up and (2) give them some real information.   Get out there and talk about it.  Just think how many people talk about their colons these days!
Always remember, get the support YOU need by reaching out to others.  Take care of yourself (easy to say but hard to do).  It’s not easy, but you’ll find people willing to help you, if you make some noise!
What do you think of the list?  Do you think any of these would have helped you as a child growing up?    

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