Sensory Speak

Apparently my plan to post once every day during Trich week isn’t working out so well.  I thought I’d only missed one day, but it has been two.  Oops.

I’m not getting very many hits lately though, so did any of you even miss it?

I’m sitting here with one of my warmest softest hats on today.  I’ve posted about these before and they are just a little stretchy so they compress my scalp a little.   So lets talk sensory.

My guess is that most people don’t even know what I’m talking about unless you’ve taken a ComB (Comprehensive Behavioral Model) training or learned about SCAMP from Dr.  Mansueto.  Dr. Mansueto is the first Trich specialist that I know of who identified and felt it was important to treat the sensory needs of clients with TTM.

Working with kids on the autism spectrum like I do, sensory needs are something I constantly think about while at work.  Many of the behaviors and frustrations presented by these kids are because they are too over or under stimulated and their brains aren’t wired to help them regulate these sensations.  It may be the lights blinking too much, back ground noises, planes flying outdoors (some of them have amazing hearing, sometimes even perfect pitch), too much movement around them.  It may be that their joints aren’t receiving the sensations of pressure and movement than most of us take for granted (which leaves them feeling like they don’t really know where their body is in space & they sort of float).  They will self stimulate with waving their hands in front of their face, needing to carry certain objects al the time, etc.   I’ve had a few students who pull their hair or twirl it as a part of their self-regulation.  It can send them into a behavioral and/or emotional tailspin if these needs can’t be met.

I have some of my own sensory issues as well, and started wondering about the connections between what worked for some of my kids (fidget toys, weight vests, bear hugs for joint pressure, etc.) and if they might not help me.  Accidentally getting this first compressing hat was the connector for me.  I’ve used other hats & scarves, but back when I wore wigs they had to be big enough to fit over that extra hair.  So they never compressed.  When I got this one all of a sudden, my hand almost stopped going to my head at all when I had it on.  Doesn’t make any sense UNLESS it is that my scalp just needs some extra stimulation (in this case pressure rather than pulling) to help regulate the little bit of extra sensory stimulation I need.

This hat and looking into the sensory components of TTM are actually what eventually led me to present music therapy at the 08 TLC retreat and now to present about BFRBs & Music Therapy at my AMTA national conference.  Music Therapists, especially those trained to work with clients with sensory issues, could be of huge benefit to us pullers who need to figure out a good sensory diet that might help us stop pulling so much.

Pretty good for a hat I bought for $6 on clearance, no?

So if you still struggle with why you pull and especially those zone-out trigger moments (computer, tv, driving, reading, etc.) see if you can identify whether you feel over or under stimulated.  Are you bored or are you feeling anxious?  See if you can find fidget items or head covers or a heavy blanket that help you to feel more at peace.  These little things might just give you one more tool to fight the urges.

Hair Adventure, Updates

First off, October 1-7 is National Trichotillomania Awareness Week.  If I can manage it, I will try to post at least once per day for the week.  I’ve updated my picture and status of Facebook.  Have you?

Now, the update on my adventure:

On Sunday my husband and I went out to pick apples, have lunch, & stop at a store that’s on the way home from the orchard.  We do something similar every fall and since I like Macintosh apples it is an early trip, usually still decently warm.  (We used to wait until closer to Halloween but I missed my favorite apples and it usually was just too cold for me to have fun.)

For whatever reason I just didn’t feel like wearing one of my headbands.

I also didn’t feel like wearing a wig.  They are just a pain and I like being free of them.  So even though I feel like my hair is at its thinnest point yet (since having grown out two years ago).  I WENT OUT WITHOUT ANYTHING ON MY HEAD BUT MY OWN HAIR (and quite a bit of hairspray…which I’d forgotten I even owned).

I actually asked my husband first if he was okay with it.  He looked at me like it was a stupid question, or he didn’t understand what/why I was asking.  So I assume he was okay with it.  Because this felt monumental, I took picture.  (Still not sure why I didn’t ask HIM to take pictures as they would’ve turned out better…I just felt I needed to do it.)  I don’t love the way it looks, and I was worried about the wind since there are LOTS of thin spots…but I think I was in need of the challenge.  Or to just go out and be myself and not let the fear rule my day.

This is pretty much still how it looks underneath or pulled back.

So even though I haven’t been doing super great on my Hands Down A Thon goals, I did make a major step forward.  I know I can go out this way and be okay.  I don’t think I even got any weird looks.  Not even when the wind blew.  But even if I had, what would it matter, unless I LET it matter?  So I say that is progress even if I’m still pulling way more than I’d like and not using my tools as much as I’d prefer.

On that note, today begins the second half of the Hands Down A Thon.  I can’t believe the first month is already gone.  It really seems like a week or two ago, not 4, that I set up my page and sent out all those emails.  I haven’t received any recent donations either, and I miss the little notices in my inbox.  They were really encouraging!  Here’s to a better 2nd half of the fundraiser!!

Trich Adventure

I went on a hair related adventure today. I’m a little sleepy now, but check back soon to see what happened.

Are you a member of TLC?

The Trichotillomania Learning Center is by far the biggest and best (the only?) resource for anyone with a body focused repetitive behavior like trich or skin picking. Upon becoming a member, TLC will send you a nice fat booklet of information, referrals, articles, etc.   You also receive information about trainings, conferences, the retreat, etc.

Right now they have a great refer-a-friend deal and I want in on it! They are offering a free DVD to both the new-member and the person who provided the referral (that’d be me).  Is there anyone out there who has been thinking of getting a membership  and just needs an extra little boost? I’d love it if you’d give them my name when you pay your dues (email me if you don’t know what it is).  I’ve been wanting both of these DVDs but talked myself out of them since I just bought “Bad Hair Life.”

For more info on this promotion see:
http://yhst-96492593834123.stores.yahoo.net/membership.html

Challenge Day 22

Wow, this thing is nearly half over already. Just today I feel like my head is finally clear enough to really start focusing again. One of my homeopath connections said that a cloudy head & mind seems to really be a symptom going around with the current cold or flu bug everyone in our area seems to have. No kidding, it’s been almost two weeks!

So, I”m going to try and refocus my energy and get back on track. Hopefully the second half of this will be illness free and more smooth.

Challenge catch up

I don’t feel like I’m doing very well with this challenge.  The past couple of days have been pretty bad.  I was sick & up all night coughing, then my husband got it worse than I had it.  We still have a whole chunk of wall missing and I haven’t even touched it for clean up because the dust would set me coughing again.  Now my car is in for $500 worth of repairs to fuel leaks (seems important to fix).  It isn’t dire, but I just feel overwhelmed and I can’t focus on anything.  So I’ve been pulling sometimes realizing it and mostly not.  I haven’t done well with getting tools to use since I’ve been so busy grabbing kleenex & heating water for tea.

I just received my copy of the documentary “Bad Hair Life” by the now executive director of Trichotillomania Learning Center Jennifer Raikes.  I wanted to preview it for inclusion into my BFRB presentation in November.  It was quite good but I found that the power of suggestion was pretty strong.  I should’ve had a hat on, fidget toys around, and taped my hands behind my back.    I should not have put it in at 11pm (my normal bedtime)  while my defenses were even lower than normal.

See…not focusing or using my tools or making great choices.  But I’m hoping this weekend with some good live music back in my home town will help clear my head and get me back on track.

The trailer for A Bad Hair Life:

Challenge Day 10-14

Wow, tomorrow this challenge will be 25% finished! Crazy.

This weekend was my birthday so I took some time away from the computer to do fun adventures with my husband.  He made up clues and took me out for lots of surprises both Friday and Saturday.

I also have a cold, which means I’ve been drinking lots of tea & water and sitting on the couch trying to get better so I don’t have to miss any work.  Resisting urges hasn’t been foremost on my mind but I do find myself more aware of what is going on.  That is progress.  I’m trying to wear my hats & scarves if nothing else, although tonight they don’t seem to be helping much.

That said, I need to get myself away from the computer before I do any further damage.

Any skin pickers out there?

If any of your have dermotillomania or chronic skin picking, there’s a new research survey that TLC would like you to fill out.

Please go to:
https://www.surveymonkey.com/s.aspx?sm=CblKVYb7p76d7EGI5Pw2BQ_3d_3d%22%3EClick%20Here%20to%20take%20survey

This looks to be a pretty long survey, but is one of the first comprehensive research surveys for skin pickers and should provide valuable insight for people who are trying to get a handle on BFRBs and how to treat them.

Challenge Days 8 & 9

Can we just pretend the last two days didn’t happen? Last night we ripped out most of a wall to fix the leak in the shower and treated a bunch of mildew too. My dad really did most of the work, but it is disheartening to see a hole rather than a wall when I walk down the hallway.

I have done a fair job of fighting urges and using tools the past couple of days. This evening is another story. I’m out of control. Sitting & working at the computer is a horrible trigger for me, and it is what I need to be doing right now. That and reading. Time to go find a good hat and try to get my brain to switch into a different mode. I’m realizing that I most need fidget toys at the computer although using them while typing could be tricky. Not that I’m getting much typing done if my hand is in my hair anyway.

I promise I will keep trying and hopefully tomorrow will be better. Two months of this challenge is feeling really long right about now.

Challenge Days 4-7

We spent the weekend kayaking, visiting family friends, walking in the woods, and playing a few card games.  For the most part it was a relaxing long weekend.  Today we came home and I noticed that the area at the base of my shower looked damp (hadn’t taken a shower in there since at least Friday).  Then I noticed that more than damp, it actually looked moldy.  I’m allergic to both mold & mildew so this is definitely NOT good news.  On a trip through the kitchen to the access panel for that shower, I noticed the underside of the kitchen cabinets had the same problem.  UH OH.  Something has been leaking in the wall for a while now.  Enough that the water has spread quite a bit and now so has mold.

So I totally freaked and stressed.  I’d planned on reading this afternoon and relaxing.  Instead I got to don my nasty respirator mask and battle the mold.  Now we have fans on everywhere and the house airing out.

Why do I tell you this?  Because I totally lost my composure and pulled quite a bit.  Pulling isn’t stress driven for everyone, but it is for many.  It definitely is for me.  All my anti-pulling tools went out the window along with the mildewy pieces of decorative trim from my shower.

So after a few days of doing pretty well, I had a “relapse.”  But I was aware of it and consciously allowed myself to keep pulling because my brain was in freak out mode.  It wasn’t the best choice, but I was able to stop myself after a bit.   After cleaning for a while, I’m now calming down, hopefully finding something to eat and will do a little of that reading.

With some sort of hat on.