Mom Steps Up To The TTM Plate - And Hits a Home Run!
- Stacy Lechtman
- Ashburn, VA
- Reprinted from InTouch Newsletter #41
- © Trichotillomania Learning Center, Inc. 2008. All Rights Reserved
Last year, when my daughter's trich was spinning out of control, I was the one who was falling apart. I felt as if a giant envelope of darkness had sealed itself around me. After my daughter stopped a pleasant, but ineffective course of treatment with a talk therapist, I was trying desperately to get her in with a trich specialist. We were wait-listed for weeks. It was the most agonizing wait of my life. I could barely look at my daughter as she got off of the school bus; I was too terrified to see the damage that had been done during the course of the day. I couldn't even identify the emotions I was feeling; it was all so overwhelming.
My daughter saw my anguish and tried to comfort me. She felt guilty for "making" me hurt so much. Looking back, I can't believe that I ever put her in such a position. She was only 10 years old! Looking back, I also realize that the trich bothered me much more than it bothered her. No lashes, no brows and a full third of her hair gone, in a single, stark white patch of scalp. Yet, she was thriving at school, happy, popular, soaring academically. Sure, it bothered her to have to have her brows drawn on every morning. And she was concerned about having her hair arranged in order to try and conceal the ever-growing bald patch-but I think for both of us, it was more my problem than hers.
Surfing on the web one day, I came across the ParentsTrichSupport@yahoo.com email group set up by TLC. I was so grateful to finally be among parents who were going through the same thing. I poured my heart out on that web group. There were, and still are, some very outspoken parents in the web support group, and one of them took me to task. In a life-changing email, he explained to me that my daughter's trich was not my problem, and by owning it so tightly, I was only making things worse for the both of us. I needed to hand it over to her. This didn't mean ignoring or abandoning the problem, or my daughter. What it did mean was that my role needed to shift from ownership to support. Support means being available to encourage and soothe-what's done is done-what's pulled is pulled. Support means continuing to research treatment options. Support means finding humor in the situation when you can, and support means loving unconditionally. I had to turn in my badge and gun back to the fraternal order of the Hair Police. I am no longer a member of the force.
We finally did make it in to the trich specialist, and my daughter is still in treatment. Her trich is under better control, but she still pulls. But we are normal again. When I draw on her brows in the morning, I like to pretend to draw on Groucho Marx brows, and we laugh.
What follows is a strategy list resulting from excellent suggestions from our trich specialist, and practical experimentation. I hope you can find something that works for you.
--Be Well,
Stacy Lechtman fishth67@aol.com
First, I suggest that you join TLC (http://www.trich.org). You will receive a huge packet of trich info; as well as their amazing newsletter, InTouch, and a list of qualified therapists and other resources in your area.
Second, I'd like to suggest that you buy The Hair Pulling "Habit" and You: How to Solve the Trichotillomania Puzzle, Revised Edition by Sherrie Mansfield Vavrichek & Ruth Goldfinger Golomb. You can buy it on the TLC website (they get some benefit if you do that--or you can get it on Amazon.com). It is an amazing book that you and your daughter or son can read.
Third, it is important for you to know right off the bat that you, or your family circumstances, did not "cause" your child's trichotillomania. Millions of children have difficult and complicated family situations filled with stress, and they do NOT pull their hair. Our kids are just wired differently--and have different sensory needs.
You may want to consider taking your daughter to see a cognitive/behavioral therapist. In my experience, well meaning and talented therapists who do not have experience with trich have a VERY hard time treating this disorder effectively--Cognitive/Behavioral Therapy with someone who has trich experience is a wonderful thing--and has made all of the difference in the world for us.
You may want to consider using an incentive system--there is a good one outlined in the book. When using incentives to change behavior, it is essential to reward the kids for exhibiting the new behavior--rather than rewarding them for stopping the old behavior. Let me explain:
We want our trichsters to replace pulling with another behavior that fulfills their sensory need without doing damage to themselves---the best way to do this is to give them rewards for using their strategies (and NOT punishing them when they pull--not focusing AT ALL on the PULLING---just focusing on getting rewards for the appropriate behavior substitutions)--so rewards for wearing gloves, band-aids, playing with small fiddle toys etc.
For my 11 year old daughter (Celia)--it's a 50-50 strategy---50% of her energy goes towards making it very hard to pull--and 50% of her energy goes towards substituting other behaviors for the urge to pull--we call it "feeding the need."
Making it hard to pull
Daytime
Celia wears Band-Aids on both of her thumbs during all waking hours, every day. They are not foolproof. Even the waterproof ones fall off--so she needs to change them several times a day. If she is asked about them, she just says she is trying to stop biting her thumbnails. She has never been teased about them--and usually no one notices or says anything. After trying a zillion types of Band-Aids--here is the combination that has worked the best. They aren't cheap, and we have to have millions around at all times so that conserving band-aids is never an issue. She needs to change them as often as they come loose. On the top of each thumb she puts a Nexcare Active Foam bandage (the kind that says: 30 one size). She pinches it shut over the top of her nail. To help secure the works on to her thumb, she then attaches a band-aid water block plus finger wrap--so that it sticks to the top Band-Aid and her thumb skin. This stays on the longest...and you cannot get a grip on the hair with them on. She even wears them in the shower.
At night
She puts on woolly, stretchy gloves--which she tapes on with medical tape -- so they don't "accidentally" fall off. Can't pull with them on.
Feeding the need
At school
Celia is now the queen of crazy pencils. She has all sorts of pencil toppers and pencils that are good "fiddlers." She has them with her all during school--they keep her hands busy--and "feed her stimulation needs." Trichsters need to have an acceptable way to get the physical input that pulling provides. Fiddling with interesting textures etc.will provide that input.
Here are her favorites:
From http://www.orientaltrading.com/
- Item # IN-12/2364 gadget pencil toppers
- Item# IN--5/531 marabou feather topped pencils
- Item # IN-12/2263 squeezable balls---you can stick a pencil through them and use them as pencil toppers
- Item #IN-39/1815 bendable monkeys--you can wrap them around a pencil--and then take them off to play with them
From http://www.therapyshoppe.com/
- #HW7321 2 Kneadables - $1.19 putty erasers! yay!!
- #SS7150 SpiderWriter Pencil Topper Fidget - $1.99 (these are great!!)
Celia went through an "oral" phase of her trich at one point. For school---tightly knot strings of mint and/or cinnamon floss around the top of a few pencils--so it looks all cool and fringy (kinda like a spider pencil topper). This is wonderful to run through your lips and chew on at school--very subtle
Do the same thing on pencils with fishing line--but first run the blade of scissors over the line (like you would do when you are curling ribbon). It gives the fishing line a similar texture to hair--also great to run through your lips and chew on. My daughter was very particular about the fishing line texture created with the scissors--she wanted to choose the fishing lines that turned out "just right" after curling them.
Also, every day Celia wears a bunch---lots!-- of those cool rubber bracelets (found at "Claires" or "The Icing"--one of those junk jewelry shops at the mall). They are great to fiddle with and chew on. They come in wonderful colors and textures, and are in style! Sometimes she ties fishing line or floss to them--so she has her strings with her at all times.
TLC now sells Trich Awareness bracelets for only $3 each.
Or, there are loads of other "cause" bracelets available: http://www.lancearmstrong.com/
New Very Cool fiddle bracelets---from http://www.orientaltrading.com/
24/1519 SPIKE BRACELETS $9.95/dzn
These are awesomely fun to destroy instead of pulling--fashionable too! :)
At home
Sensory Diet
Some trichsters need lots of exaggerated input-and others are very sensitive to input--like folks who have trouble with seams and tags etc. Celia requires lots of input! You know your child best!
We've started feeding Celia's sensory input needs in a big way--morning and night. She has a huge appetite for input that is only getting more ravenous as she enters puberty (oh, joy.). She uses this scalp massager 2x a day--and sometimes just wears it around the house because it feels good. Below is the link that shows you the massager--it's called "Happy's Head Trip." You can order it from the website http://www.unwind.com/
I love it too!
She also takes cold water on a washcloth and scrubs her face hard (eyebrow and lash area especially) --she says it feels great (brrr!).
OK--this one sounds weird--but my kid loves it...
You know those plastic mats that you put under office chairs...well they are covered with sharp plastic spikes on the underside---and yeah, my daughter has one that she turns spike side up. She uses it like a bed of nails and lies on it. It's not dangerous because her weight is evenly distributed--so it won't puncture skin or anything. I know, I know.... it sounds like an "S and M" device--but this is just the reality of her sensory needs.... ho-hum...
One more---
A weighted blanket--my kid loves to lie under heavy things like beanbag chairs etc.
These weighted blankets are made to order and cost about $200---My friend is making one for her, it should be ready soon. Here is a link for the custom ones:
http://www.quietquilt.com/order.html
I also saw them for sale for much less on ebay---but they are not heavy enough for my daughter (5 lbs--she needs 10 lbs.)
Fiddling Needs:
Baskets of "fiddlers" in all areas of the house ---right where she can get to them with no effort--even on the back of the potty!
Here are some favorites:
- Flavored floss
- Curled fishing line with a large bead tied to one end (makes it easy to find!)
- Koosh balls
- Silly putty
- Extra gloves
- Extra Band-Aids
From: http://www.therapyshoppe.com/
- #SS7149 Velvet Squidgy Ball - $4.99
- #SS7147 Inside-Out Ball - $2.49
- #GG4490 Velvet Sea Leaves - $4.99
- #GG4430 6 Fidget Bracelets - $1.99
- #GG4486 Gak Splat Ball - $4.49
Good luck with everything!
Love and healing--
Stacy