My kind of disorder

By Mir
February 8, 2007

It’s been kind of a long road since it became clear that Monkey was struggling, which those of you who’ve been reading along already know. Things at school kept getting worse, we’ve waded through the proper HMO channels and had him (mis)diagnosed as having ADD, we went back to the allergist, we increased therapy, and there continued to be no answers for us.

Until today.

The school finally completed the last of the testing Monkey’s team decided to do. He has a whole team! Trying to help him! It’s like they care, or something. (I am going to miss this school.)

Although Monkey is more or less on target academically, he’s very anxious, somewhat hyperactive, and reacts explosively to any perceived transgression against him. While it’s good news that in spite of this he’s been able to keep up, it also means that many schools would shrug their shoulders and pass the buck.

The results are in, and Monkey is a perfectly normal child, except that he has Sensory Integration Dysfunction. More specifically, he has a proprioception deficit and a hypersensitivity to touch.

Simply put: He has no idea where his body is in space, coupled with a need for constant movement to reassure himself that his body is still there. And on the flip side of the coin, all those times when someone brushes up against him and he howls that he’s been punched? He really does feel like he’s been assaulted.

Oh, IS THAT ALL? Okay then!

On the one hand, the twenty page report I was handed today was overwhelming. On the other hand, it confirms everything we’ve been seeing with him for the last year. And this report includes an actual plan for helping him. Ways to desensitize him to light touch. Ways to help him learn how to control his body. Ways to teach him how to quiet the chatter of sensory bombardment in his head so that he can relax and focus and maybe stop being so stressed out all the time.

We’re starting him on a customized sensory diet both at school and at home. It feels silly, “brushing” him with a surgical scrub brush and then compressing his joints the way the occupational therapist showed me—though he absolutely loves it, as if I was giving him a massage rather than systematically manipulating his body in an effort to retrain his nerves to transmit appropriate signals—every few hours. They promised me that if this is going to help, he’ll improve and need it less and less. Which is a relief because I don’t want to have to go to college with him and scrub him down every couple of hours.

The part I love, though, is that kids with proprioceptive issues need more sensations in their joints and muscles, such as those that “can be obtained by lifting, pushing, and pulling heavy objects.”

The occupational therapist wants him carrying full laundry baskets, and vacuuming, and toting a full backpack. A few days ago, Monkey pulled Chickadee all over the yard on a sled and when I protested that they should at least take turns, he beamed, “No, I like it!” And he does like it. It calms him down.

I’m looking forward to him feeling more normal, but I’m also totally looking forward to my house being cleaner. All in the name of helping my child, of course.


  1. Jennifer

    Whoo hooo! Now if only the folding and putting away of the laundry could somehow be deemed theraputic!

  2. Patricia

    AWESOME news, not that you have to brush him, mind you — but that you have name, a plan, and some action points.
    I have a friend (don’t we all) who’s son has this and he too was a REALLY picky eater, with the brushings also seemed to come an increased interest in new foods too. There’s some connection there — and I think it ends when they eat new stuff ;)
    Anyway, I’m thrilled that you know, that it really isn’t bone crushing or the gluten thing — seriously, cake is an important food group.
    Yeah for Monkey, Yeah for Mama, and Yeah for Chickadee to have someone to carry her books for her ;)

  3. Kris

    I believe this is what we’re dealing with, too. And I’m getting no help at all from the school. Would you mind emailing me and letting me know what tests he had?

    Last year we thought she had mild OCD, but they said it was too early to test her for a lot of things. Gah. So all that money wasted. (We have a 50% copay and don’tcha know it all falls under mental health. Bastards.)

    I’m trying to get the school to get off their collective arses and the problem is her grades are fine. Yep, just fine. (But her effort stinks and she has the same concentration/sensory issues that you describe Monkey as having. I swear these kids are like two peas in a pod.)

    Would it help if I said you were pretty, Mir? (OH pretty please email me the test names!) Pretty, Pretty, Mir.

  4. Daily Tragedies

    This is, at once, weird and wonderful. Kudos to the team for figuring things out!

  5. Karen

    How fantastic to have those answers!!! Oh Mir, that is such great news!

  6. Rebecca

    There is nothing quite like just the simple knowing of what and why, because then the fixing begins. I’m happy for you and Monkey that you are now on the correct path towards some stress-free living.

  7. crazyjane

    a couple of years ago i spent a lot of time looking at weighted blankets for one of my boys. people seem to be horrified by the idea of it but the thing is fabulous. anyway, i found this place that i think is the best place to get them (if you want) because you can add/remove some of the weights as needed. they are insanely expensive, but worth every cent. just, you know, in case you were interested.

  8. Cele

    Wow, this has made me think of so many things. Like all the people I know who go into a daze with a sh!t eating grin on their faces when you sit for hours on end scratching their back. Sensory. wow. Congrats Mir.

  9. Lauren

    A friend of mine’s son with similar sensory and behavioral issues has made wonderful progress in recent months, in large part through brushing and joint compression. It sounded crazy to me at first but he really likes it and relaxes. His touch sensitivity has indeed gotten much better. I hope Monkey has similar results.

  10. Muirnait

    Oh, I’m so glad you’ve got it figured out and have something you can DO! I know that would make me feel immensely better, and in fact, sort of does, even from way over here, as I’ve come to care about your children in a sort of abstract way :-) So, congrats, and good luck!

  11. jenn

    That must be SO wonderful after all this time, to have someone say “Oh, OK, this is what’s wrong, and this is what we’ll do to fix it.” Yay for you and Monkey!!!

  12. Krisco

    That is great to have it finally figured out! And it all makes sense, too, it sounds like.

    I have a good friend with a child who had this diagnosed. She is doing much better, and they do all those same kinds of things.

    I’m happy for you guys.

  13. Marie

    My daughter had/has the same issues. You are extremely lucky to be getting real help from the school. I felt extremely lucky to find a good OT that I paid for. Worth every penny and then some. We did the brushing and she loved it until she didn’t need it anymore. Also did weekly sensory therapy for about a year. The changes we saw were amazing. She still needs sensory work, but we have found that regular kid stuff meets her needs now: she’s in gymnastics and ice skates. Did the school OT recommend any books? I have a list, if you would like it.

  14. LyndaL

    Congratulations on the diagnosis, Mir. My son has very similar issues (he’s almost 9) and has been getting therapy for about 5 years now. He has come on leaps and bounds and can do stuff and cope with stuff now that I couldn’t have dreamed of a few years ago. He is still sensitive to noise (he wears ear plugs to go to the cinema and full-blown ear defenders to watch fireworks) and he still “flaps” his arms to get sensory feedback from his joints when he gets excited (which is often). He can’t sit still to watch TV so we have just got used to him bouncing about the room. The main thing is you know what it is, the school knows what it is and that is more than half the battle.

  15. Lisa

    Mir, that’s great news. My son has SID, but is sensory seeking, but benefits from the same sensory diet you write about. It has done wonders and he hardly needs any sort of therapuetic intervention now. The Out of Sync Child is a great book to read, by the way.

  16. Rachel May

    Oh, yay for Mir and Monkey and Chickadee!!! I’m so very happy for you. What an incredible relief to have a game plan. It’s a new day!!!

  17. MomCat

    It is certainly a relief to know. Our daughter was a 24 weeker, and has those same issues along with a list-as-long-as-my-leg more. Just sorting out one thing at a time is helpful. Best of luck!

  18. Jen

    *Delurking* So glad you’re getting help from the school, Mir! I’ve had no luck whatsoever getting help from our school for my Monkey Boy (age 7), who has the signs of being hyposensitive, because he’s not falling behind academically. Just by chance, I signed him up for football last fall and it saved us. He gets so much from the physical stimulation … it’s like having a different child! Had I known it would’ve helped that much, I’d have begged them to let him play at age 4, the year I nearly

  19. Judy

    Mir, I’m glad for you and Monkey that you are finally getting some answers… and that there is something you can do. I think one of the worse things for us as parents is knowing our kids are hurting and not knowing what to do to help them. The fact that you now KNOW how to help him has got to be a wonderful thing.

  20. Sara

    I’m glad you have some answers and ways to help Monkey. It does sound like you have a great team at school. I know you’ll be on top of it when you transition schools and I hope that the team at the new school is as good. (In my life before children, I was a special ed. teacher and team member and I can tell you that unfortunately, yours may be the exception rather than the rule.)And now, tote that barge and lift that bale, Monkey! All in the name of sensory therapy, of course.

  21. Kimberly

    Yay! Answers!

    It’s so…relieving to have answers. To know once and for all that yes, there was a problem, here’s what it is, and here’s how to fix it.

    And the best thing about what your school did? You can take that report with you to the new school, so that there’s no way they can ignore his needs and pass the buck.

    (I’ve got some massive piles of laundry over here, if he ever needs any extra therapy)

  22. Dee Dee

    That is just fantastic. A light at the end of the tunnel. So awesome.

  23. lisa in nj

    Mir that is just GREAT. I’m glad you were able to find out what’s going on. I hope I have the same outcome as you. YOu knwo that I’m going through the same thing with my son, and they have no idea what it is. I’m so happy you finally have an answer. I just hope I get mine!!!! Please keep us updated on this. Can you email me and let me know what tests were run. I would like to make sure my school does this also for my son. Thanks.

  24. chris

    I am so happy that you have a diagnosis.

    Send him on over here…. lots of heavy work he can do ;-)

  25. tori

    I am so happy you finally have answers and can move forward. My 3 year old son has isues with food textures and clothing textures. Since I have the same kind of issues (they were so much worse when I was little), I am able to help him a little bit, but I bet we will need to actually see a professional at some point. How refreshing that the school helped you figure it all out!

  26. Heather

    I am glad to hear that his school has helped so much. I wish I could get the same help from the school my son is in. He is where he should be academically, however, he is “excitable”. This is their words. He is too excited about everything, not raising his hand, interrupting. At first his teacher was good and understanding, saying that he is the youngest in his 1st grade class (he is almost 6 1/2) and he is one of the tallest kids in the class. The other day when my mom picked my son up from school the teacher had his head down on the table and told my mom now that “he never listens, he lives in [his own] world.” I guess she was quite snippy about it. I have tried all I know to, he is not ADHD or anything like that, I just keep hearing it is his age. It is very fustrating, but he is so lovable and cute I get over it quickly. I am moving and trying to keep that in consideration, but good schools are hard to find. I wish you luck in getting this all worked out, it sounds like you are on the right track.

  27. Chris

    I’m so happy that you guys finally have some answers. At least now maybe you can see light at the end of the tunnel.
    Good Luck going forward with the treatment and all.

  28. MMM

    You’re funny. But I want to congratulate you on finally having an answer and a solution! What a great team!

  29. Delton

    It’s nice to see something useful come out of one of these school teams. It seems all too often that they just “shrug their shoulders and pass the buck” and meanwhile another year passes without a child getting the help they need. Best of luck with the new plan to help Monkey. I look forward to hearing about how he’s helped in the months ahead.

  30. Ani

    As you search for a new school, you may want to consider non-public options if it’s feasible. My son went to a Montessori school for preschool and they dealt with his similar, though milder issues. The emphasis on physical manipulation of learning materials and lots of multi-sensory work really helped, as did the ability to move around rather than sit at a desk.

    Good luck, to all of you.

  31. Karen

    Having news like this certainly changes your persepctive, doesn’t it? Now you can imagine what it must feel like to be Monkey, getting that huge jolt every time someone brushes up against him, wow! I’ll bet he likes movement, too? Rocking, swinging, etc. How cool. My son (Down syndrome, different issues but sensory-seeking) liked the brushing and joint compression, too. it calms him. He loves vibration, the vacuum cleaner (he rides it), etc. What a world of difference this will make for all of you!

  32. David

    Wow, FINALLY! The relief of at last knowing WHAT IT IS must be astounding. Good for all of you, (including Monkey’s team)!
    Cele, too funny. I’d look just exactly that way too if someone scratched my back. Or my head. Actually, it’s just possible I’m part dog.

  33. Stephanie

    I”m so glad you have an answer. You must be so relieved.

  34. Leah

    I’m so glad for you guys that you have an answer! I can’t imagine how hard it must have been. Plus, you HAVE to enslave the boy in the name of helping him! I feel like it’s good timing with all of the packing and moving large boxes…

  35. dad

    I look forward to taking him to my health club and showing him how to pump himself up.
    “Listen to me now…understand me later.” We could be a regular Hans und Franz.

  36. GetSheila

    Excellent news! I can hear the relief oozing from your pores. I had never heard of this medical condition before. I learned something new today. Thanks! Oh, and enjoy the clean house before Monkey gets old enough to discover lifting weights will be just as beneficial while also turning his body into a girl magnet. Hee!

  37. Nicole B

    If you’ll recall, I commented on your ‘glory of the hmo’ entry that my little one has the same thing. He’s only 3 and despite the sensory integration diet, still exibits some behavioral manifestations. I attribute that more to age and immaturity in language skills than the ‘treatment’ itself. It’s a tough row to hoe with the schools. You will have to remain vigilant in getting him the necessary services/therapies. As you mentioned, many schools will pass the buck. I have had 3 preschools do so thus far. We are now in an excellent program through our public school system where we are at least getting some support. Good luck.

  38. Aimee

    I’m so glad you at least have an explanation for what’s going on, and a plan to deal with it. That must be such a relief!

  39. Heidi

    And this is the same kid you pulled the honkin’ splinter out of a few days ago? The body is indeed mysterious.

  40. Liise

    Can I get my boyfriend diagnosed with proprioceptive issues so that he HAS to do all the laundry, and stuff?

  41. Liise

    Oh and yeah, what Heidi said – that was my first thought…weird how light touches hurt but he had a 2×4 in his heel for a while without knowing it.

  42. Melanie Marie

    Oh Yeah! I am so happy for you that you have something to work with!!! Yeah for a less stressed monkey!!!

  43. paige

    That’s a difficult diagnosis to make and I’m so glad that the school stuck with it. I’ve taught several kids with sensory integration problems and though the therapies can be exhausting in the beginning, they really, really do help.

    One of the best conferences I went to was a national conference on autism and sensory integration issues. One of the speakers was a man with fairly severe sensory issues. Listening to his description of the room in which we were all sitting was fascinating and disturbing. Yet he had carved out a career, had written a book and gotten an agent, and he enjoyed his life and career and said he wouldn’t trade his life for a more “normal” one.

    The most difficult thing for me, with children who have this processing difference is that I am touchy-feely and I instinctively want to cuddle a kid who’s upset. So NOT what a child with touch-sensitivity needs! It’s difficult to sit quietly with a wailing child and just wait. Or to pick up brushes and brush instead of hugging.

    Good for you and good for Monkey. You guys will make rapid progress together.

  44. Dawn

    I’m so glad you finally have an answer for him! Hopefully things will start to get better, now that you know how to fix it. Plus, now you don’t have to vacuum! He does! The doctor said so!

  45. Sophie

    I see lots of hiking and backpacking in his future. I’m so glad that you have information that you can work with now. Yea!

  46. Jenn2

    Woo hoo! Nothing like some answers, instead of a lot of maybes. I’m keeping my fingers crossed for you guys. And I am so glad the school is helping you! It warms my heart when the system works.

    I had a student with these issues last year and he would come in at lunch for a brush and a squeeze. He also used therapy balls and goo, which were more fun for me sometimes.

  47. Lucinda

    I am so happy for you that not only do you have a diagnosis but you have an ACTUAL plan. So many times that doesn’t happen. Hooray for your whole family!

  48. Sheryl

    So glad you got some answers. Hope monkey makes quick progress!

  49. Cynthia Samuels

    I can’t tell you how lucky you are to have such committed people in your lives. Even if the new school doesn’t have the same, you’ll have a record of all the diagnosis and will start from “ten” instead of “zero” when you get to GA. One piece of advice – we insisted on meetings w/an expert and all the teachers interacting w/our LD son (this was in the 80s) so that everyone was on the same page. Homeroom, gym, reading specialist, music and art teachers etc. They all knew what was an “issue” and what was a discipline thing. They knew how to help. And they knew we cared enough about them as professionals to enlist them as partners rather than adversaries. The assistant principal came too – VERY helpful because that meant an endorsement from the establishment. NOT that you asked but I figure why not preempt some problems. You are such a wonderful mom that you probably know all this anyway. I’m just so happy that you know what’s up — that 90% of the battle!

  50. Dina

    You know, since I’m facing the idea that my nearly 7-year-old might be ADHD, this also fits him pretty well too. I just wanted to thank you for sharing Monkey’s diagnosis, I’m glad you have something to work with, and I’m going to discuss this as a possible issue with my son also.

  51. rachel

    well THAT explains why he sounded like my kiddos pre gluten-free, because the oldest was also dx with SID at the same time as celiac!

    The brushing helped TONS here, and she recently asked us to start doing it again after about a year without. I hope OT helps Monkey! I just put up an entry yesterday about my challenging child – one of our new tricks is giving her straws to chew on. works great!

  52. ChristieNY

    I am on cloud9 that you have a name for what is wrong and a plan to make things better! A plan that includes housework, no less! Hooray for Monkey and his Mama! :)

  53. Nick Philips

    I’m 37, and my shrink just came up with this diagnosis. It explains a lot.

    I’m reading a book about it now, Too Loud, Too Bright, Too Fast, Too Tight/by Sharon Heller

    It’s a been helpful. The things she describes in there are things that I’ve gone through that I thought no one else would believe.

    Glad you got that diagnosed early.

  54. Allanna

    Good for you!! You’ve got the diagnosis! Woo hoo!! You deserve roses, chocolate, a million-bazillion dollars and more chocolate for making it though the long haul!

    I’m so glad that you (and Monkey) have made it! Best wishes to getting everything in place! You’re such a good mom!
    If I had some chocolate, I’d give it to you right now.

  55. Carrie

    Hi — longtime reader, first time commenter.
    For a long time I’ve thought YOUR Monkey sounds like MY Monkey and, voila! Same diagnosis. I’m so glad you have identified it and so glad you are getting appropriate therapies. I know you’ll look for a school in GA that understands this and will provide for him. All public schools SHOULD, but not all do (I’m a public school teacher). We moved to a new district to meet my son’s needs. Wish I could tell you that the tough part is over, but at 11 my Monkey still struggles and just served a suspension for his latest in-school freak out. Keep with it, though. It’s all worth it.
    YEAH for a public school able to diagnose this!

  56. Dawn

    Ditto all the congrats above. It’s so nice to have a diagnosis and a game plan. As the mother of a learning disabled child who knew there was something different right from the start, but was soundly chastised for insinuating there was anything “wrong” with her, I know your relief. My Girl Monkey wasn’t diagnosed until grade 4 and it was a long haul up until that time.

    Yahoo for Monkey. Finally, he’ll get some relief from the stress. (As will his pretty, pretty mom!)

  57. Daisy

    Congrats on getting the diagnosis! The heavy pressure and joint compression (brushing) can be very effective. Eventually, as he grows older, he’ll be able to do it himself. And by then, he might discover weightlifting instead of pulling his sister in a sled. Darn.
    Good luck!!! He has an awesome (and pretty) mom on his side.

  58. alice

    Yay for diagnoses! Especially diagnoses that come with *treatment* plans, especially plans that have Monkey wriggling in pleasure.

  59. Steff

    This is wonderful news. How in the world did they figure it out?

  60. Melanie

    I’m so glad you finally got a diagnosis – I can’t imagine how good that feels!

  61. Carmen

    Mir, you might not know this, but my youngest has the same diagnosis, except that she is sensory seeking, which drives me bananas. The brushing and joint compression seem like hokey, voodoo nonsense, but they really do work. We did it for a year, as well as intensive therapy, and Riley is MUCH better.

    The books recommended above are great. If you want to chat, email me. I love to talk sensory.

    (That souds vaguely trashy.)

  62. Christina

    I’m sure everything feels better with the right diagnosis and a plan to make things better – that’s really great!

  63. DebR

    Wow, that was pretty amazing to read the articles you linked to and see all the things you’ve described over the past few months listed there. I didn’t even know there was such a thing until now. I’m glad you got some answers and that the treatments already seem to be helping. And a cleaner house – Bonus!! :-)

  64. MoMMY

    Gymnastics helped my son greatly with this.

  65. Amy-Go

    WOW, do you have a lot of people caring about you and Monkey. And I am one of them. Soo, so glad you have not just answers but a plan for coping as well! And the laundry thing? Icing, baby. With a cherry on top. ;)

  66. Susan

    HOUSEWORK! That NEVER occured to me!

    Dude, I am ALL over that. I’m going to go RIGHT NOW and get Henry to tote some laundry for me. THANK YOU!

  67. hillz

    i have a full load of washing if monkey wants to help?

    its great that you finally have an answer and a solution, and an end to all the frustration that comes with not being able to help your little monkey

  68. Lisa (qtpies7)

    Wow, I can imagine how great it feels to have a “reason” finally! I struggled for years with my son with no answers. I finally figured it out myself, only my chiropractor agrees, but I don’t care because treatments work!
    I started putting ds on chlorella, which is a seaweed, basically, a whole food, that detoxes him of heavy metals, pesticides, etc, but it also helps him focus! His grades increased radically! He is WAY less violent. It is just amazing. And exactly an answer to our prayers.
    I get it at Physical activity is also a HUGE help! He’s on the swim team and we all live happily unless he’s on a long break, lol.

  69. Lisa

    Hmmmmm, does that mean when Monkey is being a pita instead of saying, “go to your room, Monkey,” you say, “go carry the laundry basket around NOW, Monkey?”

  70. Mom2One

    Ahhh, Mir. Answers. Aren’t answers lovely? Especially answers that have things that can be done, solveable answers with things like, “Yo, Monkey, pick up that clean laundry and help me put it away. You’ll feel ever so much better and I will too.”

    Really, though. I’m glad that things are looking brighter for you. And for Monkey. *hugs*

  71. Liza

    Just in case there are times when you need some support from parents who are raising kids like Monkey, here’s a message board that is very supportive and informative:

    My screen name there is LEP :)

    MAny parents there are familiar with SID

  72. DDM

    I didn’t even get to read past the diagnosis before I was running to your comments. Delurking to say that my son has SID (Or DSI depending on where you are) as well as a brain malformation. The first is most likely caused by the second in his case. ANYWAY….I wanted to tell you that you’ve got a sympathetic ear in me. And also, to tell you that Occupational Therapy has been magnificent for my boy. The home therapy stuff can be seriously fun. A bath tub filled with jello? CHECK! I’ll keep checking back to offer my support.

  73. Lisa C.

    I have SID and had a lot of trouble in school. I was also an incredibly picky eater. I used spinning (like turning in circles) for my sensory feedback, as well as jumping. I find that jumping on a trampoline is excellent when I am feeling out of sync. You might want to invest in one if Monkey likes to jump.

    I was retroactively diagnosed as an adult, and there were no services (heck, it didn’t even have a NAME) when I was a child. I’m glad that there are so many more resources out there for children suffering from SID.

    I can assure you that it will lessen with age. As he is more able to control his environment, he will equalize in his behavior. I am mostly normal now!

    Best of luck to you and Monkey in this journey.

  74. Jeana

    I was going to recommend The Out of Sync Child too. Great book.

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