Rolling with the punches, in style

By Mir
February 18, 2009

Someone asked me a few days ago if Monkey will ever outgrow his sensory issues, and I struggled to answer that coherently because yes, of course he will, and no, not really. Sensory sensitivities are the result of a somewhat differently-wired neurological system, and though it will vary from person to person and age to age, it does seem like the relative immaturity of a younger brain struggles more than an adult who’s had time to toughen up and adapt.

For example, I think it’s pretty clear to us, as his parents, NOW (though not before, because back when we were kids, this stuff was never labeled/addressed/treated), that Monkey’s dad has some similar sensitivities. Obviously, as an adult he handles things differently than a kid would. That gives me some hope in terms of eventual adaptation.

And these days, I need hope. I need lots of hope. It helps to stave off the worry.

Part of Monkey’s particular package of sensory quirks is that he’s prone to repetitive movements. They soothe him, both with their regularity and with the sensory input they provide. One might say this is a perfectly acceptable and even adaptive way to cope, or one might say OH FOR THE LOVE OF GOD, MONKEY, STOP KICKING THE TABLE LEG! There’s a not-so-fine line between letting your child self-regulate and being driven out of your mind by a CLUNK…CLUNK…CLUNK of whatever he’s decided is the movement du jour.

As he’s grown older, the social acceptability of the things he really craves—large, full-body movements, and emitting LOUD sounds—has diminished. In kindergarten it was perfectly okay for him to spin in circles with his arms held out like a pinwheel. In third grade, well… yeah. And never let it be said that Monkey doesn’t adapt; he’s trying so hard. Good lord, if I had a nickel for every night I cursed the combination of that giant brain of his with all those misfiring neurons, I would have a REALLY NICE CAR, is all I’m saying. He feels the scrutiny of his peers. He tries to find ways to fulfill that need he sometimes has for sensory input that won’t draw the attention or ridicule of the other kids.

So he chewed pencils. Chewed them up to bits, until I explained that splinters in your lips are painful, and also that it’s hard to get your work done when you’ve eaten all your writing implements. We got him to stop, and then he started biting his fingernails. He bit them down until his fingertips bled and still he nibbled, unconsciously, as he sat buried in a book.

There was a brief period of time when he was pinching himself. It sort of looked like a very amorous kitten had given him many tiny hickeys.

Oh, I’d almost forgotten this one—there was a while, a few years back, when he was unraveling his shirts. He’d find a thread at the wrist and just fiddle with it until one arm was all ragged. I wasn’t very patient with that one, I’m afraid.

It’s nearly always been SOMETHING with him, is my point. Where there is Monkey, there is some sort of nervous fidget.

I think it was over winter break that he figured out that if he rubbed his hair JUST SO, it would poof into a brillo-like cloud which pleased him to run his fingers over in times of stress. I’m not sure how he was doing it, but the result was similar to backcombing. A section would be a snarly mess requiring shampoo, conditioner, and an extensive comb-out to return to a normal state.

I begged. I threatened. I cajoled. I told him he had to stop, it was ruining his hair. I told him that if he couldn’t stop, we would have to cut it.

And then, suddenly, he stopped. To my amazement. I figured the latest haircut threat had really gotten through, and he’s SO attached to his mane, he’d found the willpower to cease and desist.

Another habit didn’t surface to take its place, either. Not right away, anyway.

I’m not sure how long it’s been going on (and so don’t know how guilty I have to feel for maybe not having figured it out right away), but it finally became apparent what Monkey has substituted for the hair-snarling.

He’s pulling his hair out.

Pulling. His hair. OUT OF HIS HEAD.

My beautiful child has a (growing) bald spot. And I begged and cajoled and threatened and he’s trying, he really is, but half the time he doesn’t even know he’s doing it, and the other half he swears his fingers have a mind of their own.

When he got home from school yesterday, in addition to the bald spot he now had a section of—for lack of a better descriptor—bangs. He figured it was progress that he was only breaking the hair off halfway up, rather than plucking it out at the root. I suppose it was. But the combination of the past-the-shoulders hair, the bald spot, and the short section? He was starting to look like he had radiation sickness.

We sat down and had A Serious Talk. I pulled him onto my lap and hugged him close, wishing (as I always do) that it could be possible to take on his demons, myself, so that he can be free to just be the awesome little boy he is. We snuggled. We discussed. Chickadee joined us, and patted her brother and held his hand and told him she’d give him a special treat AND one of her stuffed animals, afterward.

And then he let me cut his hair.

Chickadee read aloud from a book he chose, while I did, pausing mid-sentence at one point to exclaim, “Oh my gosh, Monkey, you look like a BOY again!”

And it’s true; he went from this, looking like a girl, to this, an unmistakable boy. I was able to blend in the broken bits and cover up the bald part pretty well in the front, too, so it just looks like a regular haircut.

He was surprisingly unperturbed. Possibly the fact that his sister decided to get a haircut, too, helped him along. For her, we carefully measured; we’ll be sending this beauty off to Beautiful Lengths to become part of a wig.

We celebrated with Thin Mints and Samoas, the way God intended. Monkey also got to adopt one of Chickadee’s stuffed puppies.

Otto arrived home last night and asked where I got the two new kids, and what had happened to the old ones. They mugged and posed for him and then later got on video chat with their dad to show him, too.

They both look great. I’m glad they like their cuts. And make no mistake—I much prefer Monkey with shorter hair. But this really wasn’t the way I wanted this to happen. And we probably still have some work to do, to get him to stop plucking.

And after that, it’ll probably be something else. (I can’t think too hard about this. So hard. Too hard for a little boy, nevermind his worried mama.)

But we’ll deal with the next thing when it happens. I’ve got girl scout cookies, scissors, and even a cape. Come what may.


  1. Sarah G.

    Is it possible to teach him one? For example you could try giving him one of those rubber bracelets to pluck at. It’s quite, cheap, fairly unobtrusive and, when it wears out, replaceable.

  2. Sarah G.

    Err, that it quiet.

  3. Heather

    I have a kiddo with Sensory Processing Disorder. She isn’t seeking sensory input, as the world is too loud for her. Oh, goodness.

    What I’m saying – I feel for you. :)

  4. christine

    I don’t know much about kids with issues like Monkey, but would it help to teach him something that has repetitive movements – like knitting or crochet? He still couldn’t do it at school (or maybe they would let him) but it might satisfy his urges.

  5. Dana

    I think kids pulling their hair out is more common than you might think. Both my brother and I went through this phase as children and we didn’t have the other sensory issues. I have no idea what made us stop, obviously the desire NOT to have a bald spot helped. I never really used them, but worry stones were recommended as a non-destructive substitute fidget. They are basically flat rocks with a slight groove in them, it is supposed to be soothing to rub your thumb or fingers across the rock. They might have worked better if I ever managed to get in the habit of actually carrying them around with me…

  6. nil zed

    doodling. using up the pencil and paper that way, instead of eating the pencil.

    worrystone sounds likely, but keep an eye on it, it’s possible to worry a sharp edge right into it.

  7. exile on mom street

    Oh wow. What a brave little boy, and what a brave Momma.

    Maybe suggesting a new obsession would work? I used to sit and twirl a ring around and around my finger in school…

    That’s all I got, other than :::hugs:::

  8. Jamie AZ

    Wow. That’s a lot to deal with. Hugs to Mir and family. Love the new haircuts!

  9. StephLove

    They have such beautiful hair, both of them. I’m sorry Monkey’s locks had to go, but it sounds like he took it okay. I hope this cut is easier to maintain. And kudos to Chickadee for donating her ponytail to a good cause.

    I’m a bit of a hippie throwback and love long hair on everyone– men, women and kids. Partner, who like short hair on everyone, wants to get the almost three year old’s hair cut because it tangles. But socially acceptable long hair is one of the perks of having a girl, right? Our deal now is she can keep the boy’s hair short if I can keep the girl’s hair long. My son has SPD, too, but a milder version than Monkey. He likes his hair short because he can’t stand having it combed.

  10. Ani

    You may have to clear it with his teacher so he can use it at school, but they sell rubber chewy sticks for kids who need the sensory input. Like chewing on pencils, but no splinters.

    My son carries a smooth rock in his coat pocket sometimes, and sometimes it’s one of those spiky plastic balls. Squeezing either one tends to keep him less fidgety.

    btw I am totally jealous of his gorgeous hair!

  11. jennielynn

    This is way off point, but Lord, your children have gorgeous hair!

    Mir, I know how hard it is to watch your child struggle. You and Otto are doing a fantastic job and I’m sure that as he gets older, Monkey’s coping mechanisms will become less obvious. And maybe it’s just me, but asking if he’ll ever outgrow it seems a little intrusive. Of course, I’m feeling a bit pissy these days.

  12. Megan

    I instantly thought worry stone as well! However, as the stones are really smooth he might prefer another texture – perhaps a treasure hunt down the creek to find a special Monkey-stone that just feels right to him?

  13. Aimee

    I’m a compulsive doodler myself — but maybe that’s not the best answer for school? I like the idea of a worry stone or a rubber bracelet. It’s a way to address the need without going bald.

    Now I feel sorta bad about making Sweeney Todd jokes on Facebook. :( Poor kid.

  14. ikate

    My boss (in her mid-40s), whom I don’t think has any diagnosed sensory issues, is always braiding and unbraiding a tiny lock of hair just behind her ear. It drives me nuts to sit in a meeting with her as she doesn’t even realize she’s doing it. But it’s kind of funny when she styles her hair up and has a poof-ball patch of broken and frizzed out hair sticking out. She’s trying to stop as the hair is starting to fall out, but I can tell it’s killing her.

  15. carrie

    Sigh, such a good Momma. I have a Monkey, too, with SOOOOO much in common with your Monkey. Mine is 13 now. I’d like to tell you it gets easier for kids like them, but so far it really hasn’t — different issues, but issues nonetheless. You have lots of good strategies and do a terrific job. As hard as it is, you are doing great… and so Is Monkey.

    Thanks for the Beautiful Lengths link. My daughter is trying to get to 10 inches for Locks of Love and may not be able to hang in for the extra inch she needs. This site will take hair at 8 inches, so it is a good alternative!

  16. Melissa

    Oh, good luck to all of you. I wanted to chime in but the other commenters already suggested what I had thought of…hopefully he can find something to do that doesn’t do any harm!

  17. Heather Crawley

    We have a son, now 9, that struggles with ezcema and would stratch himself all over until he bled. Many times he was doing it and didn’t even know it. We took him to a hospital in Denver and one of the things they suggested in biofeedback therapy was to give him stress balls or small stuffed animals to keep in his hands. This kept his hands busy and away from his skin. Just a thought.

  18. jenn

    I am just a fidgeter and for some reason I love playing with paper (cutting it, ripping it into pieces, rolling up strips of it). Origami actually got me through many boring classes in public school and university. I can fold origami stars (from strips of paper… sooo easy) and cranes in my sleep. The best part is that one you get used to it you can listen to a speaker and even take notes while working on one. It’s a very non-destructive fidget and the other kids might even come to envy such a skill.

    A video about how to make origami stars:

  19. Laura

    just an FYI to people considering hair donation- Beautiful Lengths is the way to go. Locks of Love (while a very nice organization) doesn’t actually provide wigs for free. They do charge on a sliding scale so they are more affordable, but they also sell some of the hair donated to offset costs. Beautiful Lengths has (I believe) their costs underwritten, and all of the hair goes to make wigs which are given free of charge.

    What about a stress ball for Monkey? My son uses one of those when he’s studying and it helps him focus. The elastic sounds like a good idea too.

  20. elizabeth

    I don’t know anything about Monkey’s issues. Still, I can feel your worry as a mom. I worry about my little one (and his older brother) and his (their) issues regardless of how insignificant they may be in comparison to Monkey’s. You are doing a wonderful job, it shows in how your two take care of each other and all the wonderful stories you share here. All you can do is hold them close and let them go.

  21. Paula

    I feel your pain. I have a kid with similiar issues although his diagnosis is different making me think that perhaps I should investigate further. He too trades one issue for another. He had chewed up his clothes and pencils for a couple of years when suddenly that all stopped and now he picks his nose. He is 13 so this is NOT good socially. I noever thought the day would come when I would wish for the clothes chewing to return. The worst part is he doesn’t realize he is doing it! Monkey’s hair looks wonderful short!

  22. dad

    You guys are all awesome.
    And gorgeous.
    And unique.

    This could have been a “love Thursday post.”
    Nothing shows love like caring, and yes, worrying.

  23. mamalang

    You really just opened my eyes to my own issues. Hmmm.

    Good luck. I’m not bald, my clothes are all intact, and most people don’t notice the things I do :) (I’m trying to provide you hope)

  24. Jennifer

    When we first moved here, my daughter was chewing on anything that didn’t run fast enough. Fingernails, pencils, paper, sleeves, etc… I’m sure it was sensory stuff plus the stress of the move but it was driving me crazy. After many discussions about what could and should not be chewed, I started offering alternatives and rewarding her for asking for them. I gave her half a stick of gum if I saw she needed to chew. I gave her a whole stick of gum if she came to me when she needed to chew.

    I know Monkey is over chewing right now, but if you think it might help, you can pick up some food-grade tubeing at the medical supply store. Buy it wide enough to just fit over the end of the pencil. A 1-2 inch length will give him something to chew on without creating too much of a distraction. Or splinters. And if you buy a really long piece, you can tie it around his chair right where his feet are. He can kick that instead of the table.

    There’s gotta be a good board or blog out there for people to share their sensory tips and tricks but I haven’t found it yet. Has anyone else? If I come across one, I’ll share.

  25. Sarah

    I know nothing about this, but like others I wonder if there is somthing else that he can carry around to distract him from pulling his hair. Like a stress squeezy ball or worry stone or something?

  26. Annonemous

    Hi! I have a kid who has ticks. We haven’t had him diagnosed with torrets or ocd – too many labels – but I am sure it’s something. Suggesting a new ‘habit’ is maybe not the way to go. Getting to the underlying issue is probably better. I am not an expert, and I am sure you have done everything you can think of to help, and it breaks your heart to not be able to fix this – I get that. When my son stands in one spot and stamps his feet over and over b/c he can’t help himself(one of maybe a couple of dozen of ‘habits’), my instinct is to grab him and take away whatever is causing this. And I can’t. But I can take him to Reiki, work on his eating habits and get vitamin supplements to see if any of this will help him. I can also try to model good stress coping skills on my part so he can learn by watching. It sure isn’t an easy road being a mom, is it? Best wishes on this journey.

  27. pnut

    I feel for you. I don’t think my son has the sensory issues that Monkey does but he did start pulling out his hair last year. He had a very stressful year in 2nd grade (who needs stress in 2nd freakin grade??), teacher was over-the-top strict and almost militant, but he didn’t want to be moved out of his class so we struggled through. He just started pulling his hair out at the crown and had about a nickel sized bald spot. He would do it and not even know he was doing it. Of course I read online and found too much disturbing info on disorders and saw awful pictures of kids with 1/2 a head of hair, scared myself. We worked through it, and he stopped. As a mom I know how you feel wanting to take away all the awful things that life brings to our kids. Stay strong. Love your blog, makes me smile.

  28. lb

    You should check out the “Chew-ease Pencil Topper”. They are a little clear chewy thing that you stick on top of pencils. They hardly show. My fidgeter has lately started giving herself a hairstyle that has a little pigtail right in the front, and she twists and twirls it. It’s the best one so far, non-destructive, not too noticeable. I know how it is when you go from habit to habit, and the one they are on is bad, but you are always worried that the next one will be worse. The worst for us was a phase of lip-licking that left her looking like she had clown makeup on. One I didn’t mind much was chewing on the sleeve of her shirt, but it drove teachers mad for some reason. Good luck with Monkey!

  29. MomCat

    One of my daughter’s classmates had this issue starting in 3rd grade. His mother told me that she was told the hair follicles that are continuously pulled can be ruined, thus rendering real, lasting bald spots. Her son was pulling out his gorgeous eyelashes and eyebrows, as well as a spot on the front of his head. They tried many things to get him to stop, for two years. A specialist helped him stop in six weeks. I’d highly recommend professional help if it continues. There are specialists who treat nothing but hair pulling.

  30. just beaux

    I’m so glad Monkey stopped with the pencil chewing. That sounds dangerous. One of our daughters struggles with these types of issues. I have never heard of sensory issues until just recently. My wife and I have always attributed her actions to some sort of OCD behavior. Lately she has taken to brushing her hair 2,783,947,836,524,539,476 times a day and this I suppose is okay compared to what she was doing. She was in the habit of taking said brush and delivering slaps to her scalp with the brush before each stroke. Before that she was doing the hair pulling thing. We finally got her to stop when she started in on her sisters scalp. There have been many strange things that she has done over the last few years and we are constantly having to re-adjust our way of thinking when something new comes up. Everything is always such a surprise.
    Thank you so much for this post. I feel for Monkey and all those who left comments identifying with this. Sometimes the issues we face at home can be very challenging and upsetting. It has been hard. We are braving a new thing these days and I wish it could be taken away with a hug.


  31. Anna

    Wow, that’s beautiful hair! And I have to admit I was surprised that it (at least looks) like exactly the same color. I have three kids and three colors of hair (and eyes!).

  32. Amy

    We’ve been through nail biting, scratching, nose picking, and are currently chewing on the collar of his shirt. It appears that there are more of us than I originally thought. Thanks for sharing!

  33. TC

    I haven’t come here to say, “omigod our kids are so much alike” in DAYS, right? So it’s OK for me to do it now, right? RIGHT?

    Because…omigod our kids are so much alike! And I have PHOTOGRAPHIC EVIDENCE!

    And that, my friend, was BEFORE he got good at chewing on his pencils. After that, they were nothing more than SHARDS. His teacher was beside herself. He was going through two or three pencils a DAY.

    He also did the knotting the hair thing, back in the day. We, too, went for a short cut; in his case, a crew cut. Don’t know WHAT we would have done if he had been a girl.

    And he had (still has at times) the chewing the shirt collar thing. There was a point where he went through a t-shirt every day.

    In the end? Sugar-free chewing gum. We’ve had to limit him to 5 sticks a day, because otherwise I literally can’t keep enough gum in the house to get him through a week. But it’s our form of sensory diet. Helps, but doesn’t cure. And he still sucks his thumb. A lot. Yes, at eight years of age. ‘Lucky’ for us, he’s a lot less socially aware than Monkey, so he’s not yet truly aware that this is going to be a problem for him soon (as in, in five…four…three…). But it does help to keep him centered when it would otherwise be difficult to keep himself from just plain losing it.

    So freaking hard. I know. I really do know.

  34. Edge

    First time ever commenting on a blog……but I just wanted to add that Silly Putty worked wonders for me as a kid. You can pick at it, stretch it, roll it, pound it…whatever the urge du jour may be. And, if you practice at it, you can hide it pretty well from teachers. ;)

  35. Kris

    Mir, we’re in incredibly similar boats. Asperger’s has a few little quirks that go along with it such as Sensory Disorder and OCD. Yep…fun stuff, yo.

    Emily used to have fangs. Now she’s ground her teeth down to nubs. She used to have nails. Now her fingers are always bleeding and rough from biting them. For the love of all things holy I’ve begged her to stop biting….her toenails. Yes her toenails. I’ve begged, cajoled, threatened, and promised nail polish if she’d stop. It’s a sensory thing. And looking back, between her father (who is ADHD, and I suspect an Aspie, too) and myself (who had sensory issues as a kid, especially with loud noises), it’s no surprise. Of course, hindsight is always 20/20.

    These huge brains who think wonderful thoughts are stuck in these weirdly wired bodies. It’s an adventure for sure.

    Love the new ‘dos! (Seems to be the time of year for it.)

    BTW, Em’s OCD/repetitive stuff has come back. Doc says it could be part cabin fever, part overload, and part higher anxiety. Whheeeeee!

  36. Katie in MA

    I’m sorry all of you are having to go through this. I used to pull my hair/eyebrows/eyelashes out when I was in elementary and junior high school. I like the suggestions other readers have already offered: worry stones, stress balls, rubber bracelets. I don’t know if it would be acceptable for a boy his age to wear a braided embroidery-thread type bracelet (or if Monkey would *care* whether it was acceptable), but if he likes unraveling threads, maybe that would give him something to fidget with. They’re easily replaced and maybe Chickie could make him a bunch? Just a thought. I wish I had the answer to make this easier for you all!

  37. Carrie Davis

    My neice has this same thing, it is call trickatilamania (not sure if I spelled that right). My brother and sister in law have gone through this same thing. She also pulled out her eyelashes and such. She now has to take medicaitons, and they have bought multiple stuffed animals that she can keep in her desk and pull on if she so feels the need. It has been going on for about 3 years and she is now 10. The medication has really seemed to help.

  38. Lori N

    A friend of mine gave my fidgety husband some Greek worry beads. (A quick google of the term will show you what I mean.) They worked great – they can be flipped and smoothed, all sorts of sensory/repetitive input.

    In fact – I may pick some up for my son who has eczema…thanks for the reminder!

  39. binkytown

    Wow. What a beautiful scene you just painted for something that obviously is really difficult. Such a testiment to your family. Nicely done.

  40. susie

    If I were one to post on my own blog, I might have written something similar. I too have a child with SI issues and there always seems to be something to worry about and find a solution to – It’s exhausting. I want to take away his problems for himself – and selfishly for me.

    My son’s teacher last year gave him a small wad of poster putty (the kind you use to hang things on walls) to fidget with. He’d just roll and twist that little wad in his hands… I’ve also met a kid would finger knit with yarn – sensory feeding and productive!

  41. susie

    And just to add, since my son’s teacher has noted that he is more fidgety lately than usual, I have just read many great suggestions here in the comments that I will try. Thanks Mir Fans!

  42. Anne

    Like Susie above, I was going to suggest something like plasti-tac or even an art gum eraser (the really squishy kind that you can tear off parts of) for him to fiddle with. Or even a squishy stress ball or bean bag.
    I have a kid who, when tired, twirls and pulls at his hair and has given himself a bald spot in the past. We have to keep his hair cut short to stop it.
    You are such a loving, caring, concerned momma. Hang in there!

  43. Jen

    I feel for you! I think a childrens vitamin with inositol in it helped my little guy. As did rubber bracelets. For my adult brother-in-law, rings and rubber bracelets work. In any case, it sounds like you’re doing all the right things anyway.

  44. Holly

    I have similar worries for my tactile sensory-seeking daughter who still runs from loud noises and commotion around her. These past few weeks she’s been having some sort of sensory freak-out; rocking, climbing, looking for input.

    I think I may have to try the rubber bracelet/putty idea during school time, though.

    No advice, just commiseration.

  45. Randi

    Aww, I love the new cut! And just because I’m a moron, HOW did you get it to look so good?! I try to do Toad’s hair and he looks very “butch” LOL

  46. Kathy

    First time commenting on a blog.

    Tons of great suggestions. And you are a fabulous mother, Mir! Pretty, too. :D

    My stepson has ADD and we went through the chewing on pencils thing for years. I had forgotten how he used to eat the collars of his shirts…he’s 20 now, and has outgrown many of the SI issues.

    I endorse the Greek worry beads. They are fun, come in different colors and keep your hands busy. They don’t stick to anything and can be looped on your backpack or hang from your belt. J was allowed to chew gum in school as part of his 504. I’m surprised that is not something Monkey can do as well…Good luck!

  47. Becca

    Have you looked into fidgets at all? Some of them go on top of pencils. You can spin them or chew on them, that kind of thing. What works well for me is mushing those rubber art erasers between my fingers.

  48. Lucinda

    Keep doing what you are doing. He’ll be ok. How can he not with a momma who gives so much to him and a family full of love all around him.

  49. Fabs

    Mir, your entry today brought tears to my eyes, as I have wished I could take my kids worries away too. I hope Monkey finds something that will help him so he can stop pulling his hair. You are an amazing mom!

  50. Amy-Go

    Jack worries his hair too. And had a bald spot, too. I hate to say this, but the way we finally got him to stop was by shaving his head. By the time the hair grew back the habit was broken. Harsh, I know…maybe just the threat would work? Good luck!

  51. Yolanda

    My son went through occupational therapy for his SID and our therapist recommended some fidget toys from different online catalogues like Might be worth a shot to see if you can find something calming for him to focus on. We did sugarfree gum for awhile as well (xylitol gum is great for preventing cavities) but thankfully he seems to have outgrown a lot of his need to chew.

  52. Michelle

    Oh wow. That really sounds like a rough time. Though hardly comparable to Monkey’s situation, my nephew has rather severe eczema, and during the summer when he gets sweaty and itchy, he unconsciously scratches his legs RAW. It’s so awful to watch. :(

  53. Erin P.

    My fella has to have repetitive motions as well. His nails are constantly bleeding and he clicks pens until I’m driven up a wall. We may have found a solution over christmas break. He found a handheld resistance ball that is meant for rock climbers to improve their grip strength. For him, it gives him something to discretely and quietly squeeze and roll in his hand while he reads, thinks, talks, whatever. My sanity may have some hope, after all.

  54. Lelia

    My brilliant baby brother (who is now 31) must have had undiagnosed sensory issues. He has developed several “coping” methods and there is one that Monkey might find helpful. Along the lines of the worry stone, BBB has a stack of coins that he rotates around in his hand while he reads or watches tv. There is a specific number and size and I don’t know what it is, but the smooth coins are a nice substitute for the nice hair he used to twirl (he is bald now, but not totally his fault – damn genetics). It keeps his hand busy and out of trouble and isn’t too annoying to those around. Plus, no splinters or sharp edges.

  55. Kate

    first time commenter – and I have not read the other replies
    yet. Close to 8 years ago, I was in a serious accident that
    left me with what I call now as brain strain in certain areas. During these eight years, I have seen factually
    that those misfiring neurons actually can be retrained
    and that actually, from all the scientific evidence I’ve
    read (and I know it’s not all science) that age is his
    favour. Have you ever looked into or been told about
    biofeedback? My frontal lobe was injured, which resulted
    in memory and executive functions being really , really messed up – Year 4 I found out about biofeedback, and it’s been uphill all the way. When I read your heartwrenching
    post, I couldn’t help but suggest this – as it sounds like
    there is a combination of OCD and neurons misfiring.
    My opinion only., as I can hear your heart breaking from
    all this way, and because I know through my online group
    of people who suffer with some of the issues you have
    related, there’s no need to give up hope – Monkey
    will definitely need some GOOD professional help, and
    if they are understanding and good at what they do, I think
    he can retrain and refrain from some of these habits.

    The brain is sure tricky – Good luck is not enough I know,
    but I do believe Monkey will have a bright, bright future,
    which means Mom will too, if you keep on looking – and
    biofeedback was my ‘gold’.


  56. Leila

    Wow! Now he looks like the most “handsomest” boy in the world. You do nice work! Can you give me my next haircut??


  57. lizneust

    This was – heck, IS – me. I am a 40+ mother of 2, but I still bite my nails and cuticles to the quick if I’m not paying attention, pluck my hair, chew my cheek and pencils. The whole 9 yards, whenever I am a) nervous or b) completely absorbed in a book. Unless I am pre-prepared with my “stuff.”

    Worry stones can work very well, especially if you have a couple different types to switch up to suit your mood. There was a buddha I carried when I was pregnant who was distinctly skinny after 9 months, and a jade frog that actually broke when I was job hunting. I also have relied on beaded bracelets, using the rosary theory. I don’t know what the boy-appropriate version of a rosary is, but it’s restful. I also like the rubber band/stretchy bracelet idea. I once saw a small key chain that had ball bearings in it that I meant to buy, but I could never remember where I saw it.

    I also have a few tricks for when I am un-prepared but aware that I need to do something to avoid gnawing my nails down. I draw circles with my finger on my legs. I alternately press my fingernails into my palm. I curl my toes, one at time back and forth inside my shoes.

    He’ll be okay, but I know how frustrating/scary this can be. Good luck to you all.

  58. Lo

    Mir, this makes me so sad, mostly because I really feel your pain. Reminds me of my youngest, who has some peculiar quirks that are part of the lovely package that is her. If it helps, I pulled out my hair, a few strands at a time, because it was part of the artistic arrangement needed to tickle my nose while I sucked my thumb UNTIL I WAS 9! Yikes.
    I have a friend whose son has the thumpies and the spinning and the other Motion Things. That, too, has passed, but at its peak a behavioral therapist told them to get him involved in team sports that would wear him out and burn off energy. And that’s what they did. Koosh balls help, but school won’t let you play with it there. IT’s soft and gooey and you can roll it fairly subtly when you’re antsy.
    His life will get easier and he will be calmer. He’s just energy in motion.

  59. Kelly

    I agree on the worry stone. My son had a habit of picking at the skin on his scalp when he got nervous. Picked himself a nice perfectly round spot that looked like ringworm. After 3 trips to the doctor to get notes for the school confirming NO ringworm, we got a worry stone. Craft stores usually have a pretty wide assortment. The smooth, shiny finish was irresistable to his tiny fingers and he could keep it in his pocket at all times.

  60. Shannon

    I’m an adult with sensory problems (which no one realized when I was a kid). My main issue is avoiding sounds (which heaven help me, I don’t know what I’m going to do when my baby is born) but I guess I have the fidgetedy habits as well. I used to bite my nails and to this day I still pick at my split ends. I like my long hair and I don’t like it pulled back. When it hangs along the side of my face it provides a visual barrier between me and possibly offending visual stimulus.
    You do figure out ways to deal with it as an adult. I’ve heard occupational therapy can help, but haven’t tried it myself.

  61. Lisa C.

    I speak from experience when I say that dealing with SPD as and adult is totally different from dealing with it as a kid. Totally different. Primarily because YOU are in control of your environment and you can eliminate the stuff that stresses you out and spin to your heart’s content in the privacy of your own home. Nobody is forcing you to eat stuff that drives you nuts. You choose your own clothes. Etc. Don’t worry about it too much.

  62. colleen

    My daughter carries clay everywhere — I’ve never thought of it as a sensory issue before, but I bet it is; with two brothers diagnossed with asperger’s, and with her showing some of the symptoms but in a quieter, less obnoxious way, it would make sense. She is great at making things out of clay — horses, dogs, people. Whe she doesn’t have clay, she is drawing or folding paper into shapes that she dreams up.

  63. Sheila

    I think you should take the cape and wear it around for a couple of days: “It’s a bird, it’s a plane, it’s…SuperMama!”

    But shake it out before putting it on. All that hair. Itchy.

  64. MrsDoF

    Goodness gracious, this sounds soooo much like me as a kid. Drove my mom and grandma nutz with all my repeating.
    I bit my nails to the bleeding stage, same as your boy.
    A river rock in my pocket, which in those days of girly dresses, a pocket was hard to find.

    So-o, Grandma taught me how to crochet. And a cousin taught me how to use a nail spool and yarn to make a rope. And my 7th grade Study Hall teacher allowed me the whole hour to make something pretty while working out my problem.

    I still have a tote bag ready with hook and yarn, everywhere I go. Thousands of aphgans and potholders over the years.

    Awhile back, I bought a set of knitting peg looms, and learned to make hats. Two dozen in ten days to the newborn nursery at the hospital.
    Sometimes, sensory and repeating motion needs have benefits.

  65. Rita Arens

    I’m sorry Monkey doesn’t appear at peace with all the fidgeting and plucking. He might be, though, in his own way. I hope he finds something to pick at that nobody notices and leaves his lovely hair alone.

    I’ve known people who stuck pins in their legs and people who pulled out their eyebrows and eyelashes, people who chewed their nails to shreds, people who peeled the skin off their hands. My grandpa whittled when he was nervous or edgy. I pulled my hair out for a time. You’re doing great. Take care.

  66. Megan

    Hey – I have a suggestion for you (Gosh, I bet you’re just loving the unasked for advice here). My mom is an occupational therapist, I’ll see if she can verify what I say… but I know she used to have this seat cushion for kids who can’t stop fidgeting – who need to self-regulate all the time. It’s wobbly. You can shift back and forth on it, quietly and non-destructively. It honestly sounds like something Monkey might use to great advantage. She used to have the school buy them for kids to use all day – they’d carry them from class to class and it would help relax them and help them concentrate.

    DiscOSit Air Cushion. Color: red, Dimensions: 13”

  67. AKD

    I like the idea of a rubber band as a bracelet. It seems like the rubber bracelets (like Lance Armstrong’s Live Strong yellow ones) would not provide as much of a sensory help. I’ve known basketball players who wear them when they play and snap the band when they do something bad, like commit a turnover.

  68. Char @ DigiScrapChat

    Oh, your post made me cry… I can relate! My son is in 1st grade, and we’re still trying to work on the “not spinning in circles” and loud noises stuff.

    Someone suggested a worry stone to us, but we figured a rock in the hand of a 7 year old probably wasn’t a good idea for school, so I’m thinking about a rabbit’s foot for him to “worry” with. He has a stuffed animal for home that he uses – he rubs the tail of the tiger between two fingers (and o his nose-ugh) on a regular basis to calm himself. I’m hoping a furry little friend in his pocket will work for school!

    Love the haircuts… and thanks for being so open about this. It surely helps…

  69. Trish

    I,too, think Silly Putty fits the bill well, especially for school. It’s cheap, quiet, and safe. A good friend of mine from college went through Silly Putty like crazy. It helped her focus on her studies. At Christmas, we would give her a stocking full of Silly Putty to get her through the next semester. I’ve had good luck in the past with giving my students rubber bands to stretch.

    My own son has a bit of a chewing issue himself. His pencils look like beavers live in his desk and he’s chewed many holes in the necklines of his shirts. Luckily, he loves to draw and keeps his hands busy doodling most of the time.

    Congrats on the hair donation…such a great cause!


  70. Lindy

    If you figure out how to fix this one, please let me know. I have my share of neuron mis-firing problems and whatnots (Different from Monkey’s) and I have the same perpetual bangs and bald spots problem. I’ve never figured out how to break myself of it.

  71. mama speak

    I didn’t read through all of the comments, but I was thinking that maybe the hair pulling started because of it’s length. You know, it was accessible (being longer), possibly even in his way at times so we was messing w/it anyway…

    Anyway, my point is that I’m optimistic that maybe, just maybe the hair pulling won’t continue.

    My husband has the nervous twitch thing too. His has manifested in a bouncy knee/leg; it’s great for soothing babies. Perhaps you could get Monkey to do this and then sign him up to volunteer at the local hospital. ;-) Seriously, I feel for you and will be saying little prayers for all of you. Kudos the Chickadee for being so supportive of her brother when he needs it.
    And your kids do have the most beautiful hair eveh!

  72. melanie

    Mir, I know exactly how you feel. Monkey sounds exactly like my own son.. Just in case you haven’t heard of it, I wanted to tell you to check out the Wilbarger Brushing Technique. It sounds like a bunch of hocus pocus.. i get that, but we had so much success with it. Essentially we brushed my son with what is basically a surgical brush (like surgeons use to wash their hands) This is followed by deep joint compressions (my son’s favorite part.) This technique must be prescribed by an occupational therapist and you must receive instruction on how to do it. All I can say is it works. After about 3 weeks of brushing, my son stopped chewing on his shirts, stopped blinking incessantly, stopped walking on his tiptoes, stopped waving his hands in front of his face. After 6 weeks we were able to stop the brushing all together. (We still get the brush out after a stressful day, but that is becoming a rarity.) He still has sensory issues, but not so much that anyone would notice. He lets me know when it gets to much. The other day, we had to drop his younger, more social brother off at the mall to spend the day with some friends.. While we were there, I was talking to some of the other moms who asked why I couldn’t stay and join them. My son gave them the greatest answer ever. He is a literature buff and is completely fascinated with Dante’s Inferno right now. He told them we had to leave because “like Statius, the sensory portion of my soul is overwhelmed.” He just the coolest kid I know. His sensory issues are just a part of this awesome unique dude that I wouldn’t trade for the world. Let me know if you want to know any more about our experience with brushing. It was truly nothing less than a miracle for us.

  73. momzen

    Your girl has learned a wonderful generosity (from her mother, I’m sure). Your boy is brave beyond measure (got that from you too). You are AMAZING! Your patience and ability to look at the big picture and hold that for your kids is awesome. Thank you so much for sharing your life with us. I feel honored to be able to read.

  74. Amanda

    I have a boy (age 10) with sensory issues as well. He’s diagnosed with Asperger’s Syndrome and your Monkey reminds me a lot of my Bryan when I read about him.

    The hair pulling… poor guy. I have a niece who pulls hair like this. She is almost bald now. It’s called trichotillomania. Although all people who pull their hair can’t be diagnosed with this some are. I hope you all can find something to replace this habit with, that is, if it’s simply a habit. And quickly. My neice likes the way she feels when she pulls her hair. She said it changes how she feels. She began around the age of 8 and now that she is 11 she still does it… and we’ve all grown to accept it. She pulls out all her hair though, eye lashes, eye brows, arm hair… etc. She is nearly bald every where.

  75. Trish/Astrogirl426

    Oh, this seems to be a common thing with little boys (sigh). My guy has SPD too (sensory seeker, just like your Monkey) as well as some Asperger’s (which fortunately seems to be improving). Bunker Monkey is a full-body-movement kinda kid, rather than a fine-motor-movement kid (loves running, riding his bike fast, jumping, etc.). So we struggle with getting him that sensory feedback. But I agree with the posters above – some kind of inexpensive bracelet (maybe hemp? socially acceptable for boys, plus rough texture, plus you could have a charm woven into it that could act like a worry stone), or something he could carry in his pocket….Bunker Monkey had one of those chew sticks (we called it his chew toy, because we are bad parents and are going to hell) back when he was REALLY into the chewing. They’re great. Good luck with all this – I firmly believe this stuff is genetic, as I share some of his sensory seeking needs – I chew my lips and cuticles, and pick at blankets/clothing when I’m anxious.

    PS If Monkey likes the bracelet idea and you can’t find anything suitable, let me know. I make jewelry, and would gladly make something to his/your specifications, no charge :) We SPD moms gotta stick together!!

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