Different kinds of sensory issues

Yesterday I talked about the things we’re doing for TwinkleToes, the sensory activities we do for her. To show a little of the difference in the way different types of sensory issues must be treated, tomorrow I’ll talk about what we used to do for GlitterGirl, who had the completely opposite type of sensory issues, so we had to do different kinds of things with her. Today, I’ll explain why their sensory issues were (are) so different.

Both were deprived of sensory input, though GlitterGirl’s sensory deprivation was a whole lot more severe. But, GG wasn’t institutionalized for as long, either. Another factor though: GlitterGirl had a caretaker that cared for her, and I didn’t see that TwinkleToes had anyone who cared a bit about her.

My belief is that GlitterGirl’s brain adapted to the “no sensory input” atmosphere of her orphanage by becoming more sensitive. I’ve mentioned before that her crib was in a room without electric lighting (some light would have spilled in from the hallway at night, if those lights were on), and that there was a little bitty window that was dirty and grimy and didn’t let much light in. Something the rest of us wouldn’t see/hear/feel/smell as sensory input, she turned into sensory input. It’s like turning the squelch on a CB or ham radio up or down – she turned it way down so she could pick up more stuff. Which was fine while she was in that dark, colorless, music-less, place. But then we took her out into the world, where there are colors and textures and sounds and smells that she’d never encountered before, and it was just too much for her. It’s like taking your Ham radio settings you used on a deserted island and then going to the big city without changing anything around. There would be too much stuff coming in, you wouldn’t be able to make sense of it. We did a lot of work with her before she could live in the real world without feeling that she was being bombarded. She is still sensitive to loud noises and chaotic situations, but as she’s gotten older I’ve taught her to focus on one thing when that happens, to pick out the one (or maybe two) things she needs to be paying attention to, and to not let the rest of whatever is happening get to her. I love watching her run around outside with her friends, when everyone is whooping and hollering and running every which direction and she’s right in there with them, totally enjoying herself. And when I watch her rock climbing and rappelling, sometimes I want to cry, because I never thought she’d be able to do something like that, with so much sensory input. She’s come such a long ways. But, she’s probably always going to freak at the least little injury, and she’s probably always going to insist that her socks go on just exactly the right way, and I’ve resigned myself that she’s always going to act like you’ve hit her in the head with a hammer if you snag on the least bit of a snarl when you are doing something with her hair.

TwinkleToes, on the other hand, turned her squelch way up, so she wasn’t picking up anything at all. I believe this is because she learned crying didn’t get anyone to pay attention to her, so she stopped crying. Hunger pangs did her no good, since she had no way to make them go away, so she tuned them out. She had more unpleasant sensations than pleasant sensations – so she turned the squelch up so she didn’t feel any sensations at all. Her orphanage had a lot of screaming babies not being paid attention to when we were there, plus there was music over loudspeakers, there were colorful posters on the walls, and there were huge windows with a lot of light spilling into the rooms. At first glance, she had lots of sensory input, but she apparently tuned it all out. From what I could tell, she had no pleasant sensory input that involved interacting directly with her. The only thing pleasant was likely being fed, but she was so malnourished and so skinny… I think once she turned off those hunger sensors, then being fed was no longer a source of pleasure. Plus, the bottle was just propped up, with the end of the nipple cut off so the formula just fell into her mouth, there wasn’t even the pleasure of sucking.

When something happened to TT in those first few weeks with us that should have hurt (bad), she just looked at the injured part of her body with total detachment, like it belonged to someone else. There was no reaction at all. After a few seconds of watching her do this, I reacted for her, pretending that she was making a big deal about it, and making a big deal about how I was taking care of it for her. We had to teach her that it was okay to cry, we had to teach her to tell us when something hurt. The problem with that was that when something should hurt, she started telling us that it hurt and reacting appropriately, even though (apparently) it didn’t hurt. So we thought everything was okay. But it wasn’t, she had just watched her sister (the drama queen) and taken her cues from her about when she should cry. So for a while I thought TT’s sensory stuff had worked itself out. But then we started having meltdown issues and nothing was working so I went back to square one and started reading through my books to see if I was missing something, and I saw some red flags that there were still sensory issues. And, wonder of wonders, we started dealing with the sensory issues and the meltdowns stopped.

So, to recap – GlitterGirl had almost no sensory input, but she had a caretaker who cared for her and who likely reacted as best she could when GG cried about something. Her caretaker had a whole lot of babies to care for, so every cry probably didn’t get reacted to, but at least some of them did. GG’s senses were made more sensitive, so that in her sensory-deprived state she could get some sensory input. But that meant when she went out into the real world everything was too loud, too chaotic, too much.

TwinkleToes had some sensory input in her environment, but she was practically starved and was malnourished, and she had no one to react to her cries. So she turned her senses to less sensitive, as that made all of the unpleasant things fade into the background for her. So now she is a sensory seeker, she needs more sensory input than the average child, or she goes out of control.

That’s an oversimplification, of course. There is more to it than that, but you get the general idea of how circumstances in an orphanage can create different kinds of sensory issues.


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9 Responses to “Different kinds of sensory issues”

  1. klem Says:

    This is a great explanation of sensory issues.

  2. inHistime Says:

    Wow! I’m looking forward to “the rest of the story”.

  3. debwise Says:

    Oh, RQ, where have you been all my life (with my adopted daughter Mia)?! Our daughter is so like GG in her sensory issues, especially with the hair tangles… The babies (stuffed animals) have to be lined up and tucked in the covers just right, the socks must be exactly right, the clothes touching her skin must be super soft, and here’s another one – does not want to sleep with any covers on, ever, even when it’s cold??
    Thank you for explaining the sensory issues so well, and for giving me someone to relate to.

  4. doc33 Says:

    Thank you so much RQ for bringing light to these issues. I am amazed by how many parents have adopted and not read a single book, or sought out any information on these issues. I am still learning and will not stop until I can somehow learn to help my daughter feel comfortable.

  5. debwise Says:

    I think there are lots of adoptive parents who read all about attachment, bonding and other parenting issues, but the sensory integration issues are not that widely known outside of the education community. Although I’ve shared the books and educated many parents about sensory integration issues, it’s still great to hear about it firsthand from RQ in relation to GG and TT’s orphanage experiences. Keep up the great blogs, RQ, and more and more parents will be more in tune with their little ones.

  6. moonwater Says:

    Thanks for doing these posts, RQ! Very necessary, since sensory issues can be subtle and easy to miss, even by OT and PT as part of Early Intervention.

    Just wanted to also remind parents that very bright children are also at risk of SID even if they are not post-institutionalized. My first DD is both very bright (taught herself to read at 3 1/2) and PI, so doubly at risk, and yes she does have SID which it took us years to catch precisely because she is so bright and was compensating for it. EI completely missed it (b/c she was so good at doing all the other skills, I think).

    SID can resemble ADHD in school age children, but the treatment for the two is very different. The book _The Out of Sync Child_ is a great resource to begin with if you have questions.

    And I agree that I HATE combing my DD’s hair. You would think that I was murdering her. I’m making an appt. right now to get a few more inches trimmed off to make the daily torture sessions easier on both of us!

  7. lloll Says:

    Great description RQ! I’ve read _The Out of Sync Child_ before but this description of the 2 different types really clicked something in place for me.

  8. beatr1ce Says:

    RQ- Sounds like GG has some of the same issues that my dd has. My dd’s issues are more around sensitivity to loud noises as well as oral sensitivity. She drools a lot and is a super picky eater. Did you expose GG to loud noises to get her over it? There are some noises that are loud that don’t seem to phase her a bit which has me a bit baffled. Why some but not others? Do you think it has to do with overstimulation? The same noise on a different day seems okay. Sometimes if I am singing she will say, “Mommy, please stop singing”. Okay….just to be clear…she is not the only one who asks me to stop singing..LOL

    Hates wearing boots, mittens, socks, hats but loves to have her feet rubbed and loves walking on rocks and other bumpy surfaces. Loves the wind in her face. She always says, “no wear my hat, I want to feel the wind in my face”. Of course living in the northwest is tough since she will not wear the boots, mittens and hats.

    She doesn’t crash into things but LOVES being upside down, jumping, swinging. A bit of a daredevil.

    Looking forward to hearing what you did with GG to help her. My dd is afraid of so many things. Do you think that rather than avoiding those things, I should expose her to them? I don’t want to force her because I am afraid she will be even more afraid of them. Things like snow, bubble baths, dogs, gloves and hats on people etc.

    dd 26 months old
    Gotcha day 9/11/08

  9. RumorQueen Says:

    beatr1ce – I’ve found that with GG, she could handle X amount of stimulation, and then that was it. One more thing and she freaked (or melted down, or whatever). That one thing may have been fine on any other day, but followed by everything else it was just the final straw. So, yes, a noise may be fine one day and not at all fine the next.

    And, you need to understand that they may want one type of sensation while not being able to stand another type – even though it may be to the same part of their body. So, the rocks and bumpy surfaces may be something she had at one point, something familiar – but the confinement isn’t something she can handle. Same nerve endings, different things triggering those nerves.

    We had to push GG in little increments, but never so much that she freaked or went into a panic. Enough to irritate her or make her a little mad, but not enough to freak her out. So for the snow start out by maybe tossing an ice cube, or sliding it back and forth to each other on the floor, and work your way up to her being able to touch snow outside. If you can find ways to make it into a fun game to play, it can make all the difference in the world.