School accommodations for sensory-based motor disorder
May 11, 2019 3:07 PM   Subscribe

Little eirias (previously, previouslier) has been seeing an occupational therapist pursuant to some behavioral problems in first grade. Her intake assessment suggests a mild postural disorder. What in-school accommodations are both reasonable to ask for and have a decent chance of helping? (Difficulty level: small private school.)

The etiological reasoning: The vestibulo-ocular and proprioceptive abnormalities the OT saw will make it hard for Little eirias to stay upright, which leaves her tired all the time despite adequate sleep, which in turn may be bleeding into general self-control problems. These self-control problems have been described in a confusing array of ways but many of them do seem to be body-based (falling out of chairs, rolling on the floor, chewing on stuff, complaining about fatigue the minute anyone criticizes anything she's doing).

There are a sea of evidential caveats that could be applied here, about the disorder itself, the diagnostic process, its link to the presenting complaints, etc. What keeps me listening (apart from the miasma of helplessness that has been our school year, which, okay, let's be real, is a big factor) is that the specifics of the diagnosis match well to concerns past teachers have shared with us with no "behavioral concerns" angle, about a tendency to fall over, slump in her seat, fall out of her chair, trip on air. She's also been complaining about fatigue literally since she was old enough to talk (to the point where we've already done the rule-outs for leukemia, celiac, everything else scary). So whether or not this is The Answer to this year's complaints, it's describing something that fits with previously-known facts, and thus I'm inclined to believe the phenomenon itself is real and worth addressing, even just for my child's own comfort. And Little eirias really adores the process of OT, too, in that wholehearted way that she used to adore everything, and we're just counting ourselves lucky we can afford the cash layout.

Her therapist is visiting her at school this coming week and we'll get ideas from her at our weekly appointment. I'm just trying to widen the net so that when we go in to speak with administration, we have a healthy list of ideas to try, both right away and to keep in reserve in case the first-line ideas don't have the effect we're seeking. The principal says they want to work with us (and I think many of the teachers really do), but everybody is feeling very worn and frustrated at this point in the school year, so I'd like this conversation to be productive and full of possibilities.

Stuff that's been tried or will be: Several teachers have tried wiggle seats but have disliked what Little e does with them (too much wiggling/spinning, apparently). I'm sure the OT will look at chair/desk height.

Stuff we're already doing at home: all Little e's extracurriculars are pretty physical (swimming, aikido, piano) and should each build stamina in different ways, so it's a little surprising/disappointing that it hasn't transferred, although her stamina within each of those contexts has really improved as she's kept at it. This week we'll also try a little daily morning exercise beyond the OT, I think; since trying to maximize sleep hasn't really paid off, we might as well try something else. I'm thinking a jog to a nearby park for five minutes on the swings.

The one advantage we have is that Little eirias is extremely verbal, and so I'm hoping that once we can find something that helps, it won't be too difficult to teach her some self-advocacy around it. Right now her feelings are pretty sore and even though she's gotten much more communicative about school in general since I last posted, she's still very reluctant to talk about body stuff, so that's a medium-term rather than a near-term goal. Honestly, it's got to be very personal and very humiliating to have every adult in your life policing a relationship with your body that was probably not great to start with. I'm not sure if there's a polite or productive way to convey that to a principal, but if there is, I'm all ears.
posted by eirias to Education (16 answers total) 2 users marked this as a favorite
Adults should not be policing her relationship with her body and frankly, this whole question as phrased concerns me.

She is getting OT, swimming, aikido, piano, you want to add in jogging, and you're concerned stamina hasn't transferred quickly enough? What does the OT say about this treatment plan and adding more? How long has she been getting services? How reasonable are your expectations? Also, is this the same school where you said people who work with her vibrate with rage? I just want to ensure I have the whole picture.

I can tell there's a lot going on and you're clearly worried. I would suggest, especially considering your history at the school that you have the outside OT consult with the principal and staff. Even in the best schools, there can be rigidity when parents come in with a list of all the accommodations their child requires, but staff are more receptive to a scientific report that explains the disorder and how to work with it.

Lastly, she's still very reluctant to talk about body stuff, so that's a medium-term rather than a near-term goal. Honestly, it's got to be very personal and very humiliating to have every adult in your life policing a relationship with your body that was probably not great to start with.

I am struggling with this. Little kids don't really think this way. They don't talk about their bodies because to them, there's nothing to talk about. Having expectations that she can express her feelings about her body--and feeling humiliation--these things are not typical for little ones. I would step away from the expectation that she should communicate about her body. If indeed she has a minor postural issue, then I would back way off on focusing on her body and getting it stronger. Just let her be a kid. She can do fun things that help with the issue, but there should not be adults policing her relationship with her body. Other than special cushions and desks at school, I would be really careful about turning school-a place where she already historically struggles--into a place of even more adults interfering with her body's movements.
posted by yes I said yes I will Yes at 4:14 PM on May 11 [8 favorites]

I’m an elementary teacher with a lot of experience working with kids with sensory issues but I’m not an expert. Here are my thoughts:

-They make textured rubber cushions that go on a regular chair and don’t allow as much wiggling as a wiggle seat but do give some support and sensory feedback.
-Ask to what extent she can do independent work on a rug lying down or even sitting in a Rubbermaid tub (cut the lid in half to make a tray desk). Less disruptive than a wiggle seat, still gives her body a break.
-Not sure what the routine is at your child’s school, but the number one thing that helps kids with this kind of motor/sensory development is unstructured outdoor play. Running, jumping, monkey bars. So that time needs never to be taken away as a behavioral consequence or a time when she is pulled into therapies.
-Make a sensory toolkit of things that can help her calm down when she is disregulated or perk up when she is fatigued. A pinwheel to blow on to take deep breaths, floam that makes a bit of a snap crackle sensation, or a notebook with sequins in the cover (has a fun texture to play with). Keep it at school and talk to her teachers about prompting her to use it when needed.
-Request short breaks throughout the day when she can get a drink of water or walk around if those times are not already part of the schedule.
posted by mai at 4:19 PM on May 11 [6 favorites]

I went back and read your first question and as a teacher it concerns me too. I wanted to add that kids can tell when adults are annoyed by them, and that can make defiance issues worse. Behavioral issues can become a power struggle between the adult and the child.

While you don’t have the power to make the teachers into nicer people, you can hopefully frame conversations with teachers as offering them interventions that can make their lives easier. If you explain what’s happening with your child’s development and follow it up with suggestions, and offer to help with materials/implementation, hopefully it will take a bit of the strain off of the teacher-child relationship.
posted by mai at 4:27 PM on May 11 [5 favorites]

Not going to threadsit, just wanted to clarify a couple points.

One, all of Little e’s activities are things she loves or at least likes, and she’s been doing some of them for years. This isn’t all or even mostly medicinal, it’s fun for her too.

Two, my instinct about what I’m calling body policing is also that it sucks and is dumb (the longest standing disagreement in my marriage is about how much to care about sitting still at dinner; my position is to not care at all) but I am contending with teachers who describe my kid’s behavior as majorly disruptive, potentially injurious (the evidence for this is thin IMO), extremely hard for most people on most days, etc. I’m trying to set aside the bad feelings I still have about how things have gone at this school for long enough to see if accommodations will help us find a balance we can all live with, but I haven’t forgotten those feelings. I’m just choosing voice over exit, for now.
posted by eirias at 5:59 PM on May 11 [2 favorites]

My instinct is you are facing an unpleasant battle with this school. They already see your kid as a behavioral issue, you disagree. You said they openly do not like her. You mentioned taking her to many different doctors who all found nothing and say her behavior is normal stuff.

I do not think that having an outside OT who has diagnosed a minor postural issue is going to sway them to treat your kid any better. My sense is they already have a combative or at least unpleasant relationship with you. They already have an image of your kid. A new OT diagnosis is not going to change their feelings.

Honestly, you would be better served finding a new school and give her a new start.
posted by yes I said yes I will Yes at 6:27 PM on May 11 [13 favorites]

We have been there, kind of, with my son who is almost 7. He has a mild form of cerebral palsy which isn't outwardly obvious to most people but affects his trunk control and stamina. And autism so definitely the sensory stuff going on too, although a little different from your kiddo. My son's school was also willing to help, in theory, but baffled as to what to try. Having our OT visit and advise the teachers helped, and if the school has an OT on staff, definitely get your OT to liaise with him/her.
Things that helped: a rocking chair or bean bag chair for circle time because sitting cross legged is too hard. A cushion he is allowed to take with him to music/gym/library to lean against as needed. Lowered expectations about compliance (ha, not easy to implement!), so if he is worn out from doing desk work he can take a break on the bean bag chair with ear defenders and a book for 5 min. Also sometimes for him letting those trunk muscles relax by going crazy, so sensory breaks jumping on a mini trampoline and rolling on a therapy ball.
It's been a looooong 2.5 years discovering what helps and advocating for the school to implement it. But it has been worth it. Good luck!!
posted by bluebelle at 7:31 PM on May 11 [3 favorites]

Hi I'm an OT student.

You say postural disorder--do you know any more than that? Motor based sensory disorders is a really broad umbrella term that can encompass a very wide variety of sensory disorders with a very wide variety of manifestations. From what you've said, I believe you're describing a sensory disorder where she's sensitive to vestibular input. Broadly speaking, this will make her feel like she's going to fall down all the time. What the rest of us experience as a mild bump or push can feel absolutely terrifying to these kids. School in particular--with it's onslaught of other kids and loud noises and uncomfortable chairs and big playground with huge swings and climbers and all else--for a kid who feels chronically unbalanced, chronically at risk of being trampled in this huge, big, scary place--can be terrifying. A lot of teachers don't understand this.

With that said, your description is generic enough that I'm not sure what you're talking about, which means that no one should be giving any suggestions until we have more information because we are all at risk of reccommending things that will make this worse for everyone involved. Find out exactly--in as specific terms as possible--what you're dealing with. Learn everything you can about it on your own. Then we'll talk.

My next suggestion is to trust the OT. The OT is likely going to do work with her that focuses on balance and core strength. Give the intervention time to work. And before you talk to us, talk to HER about what exactly is going on and what SHE reccommends. Get as much information as possible from her. You can even arrange a meeting with her and the kid's teacher to figure out what your next steps are. Also be open to suggestions from her about what you guys can be doing at home to help calm her down. Both you and your spouse should be involved in this conversation so everyone is on the same page. Everyone needs to be on the same page.

Broadly speaking, there are certain sensory interventions that are calming to basically everyone ever. These include weighted blankets, cool, dry textures, and slow, gentle swinging. Consider getting her a weighted blanket if you don't already have one. For cool, dry textures, think dry rice with toys in it. Wet sand can be VERY stimulating and uncomfortable for some kids, so I would very much not reccommend that. Finally, with the swing, the key words are SLOW and GENTLE. Meaning that someone else should probably push her. If she's terrified, DON'T PUSH HER. Let her sit on it and give her total control. Let her push herself. Pushing a kid who's scared will only make it worse. You can try these at home first, then see if the school is willing to incorporate them into the classroom for her.

Beyond that, there's really not enough information to give any more specific information. Find out more, talk to the OT, and do some research. Good luck. It really will all be totally okay. I promise.
posted by Amy93 at 8:11 PM on May 11 [12 favorites]

She sounds very similar to my daughter, who was diagnosed with adhd at the end of first grade. At school, she has a wedge to sit on and a step stool, as well as squishy balls. Most importantly, she has always had kind, compassionate teachers who are on her side and are willing to do the work of gently redirecting her back to her work, letting her sit on the floor and on bean bags, and providing her with support. No amount of intervention and tools would been effective without this key factor.

You're in a small private school. At the very least, they should be providing her with this level of individualized education. This is literally what you're paying them for. No level of academic rigor is worth having your child's spirit crushed by people who unable to meet her needs.

I realize that moving her won't be easy, especially if her grade reports show behavioral issues. But it sounds like your school is intolerant of these types of issues even when they're age-appropriate. Imagine how things will get when they're not.
posted by snickerdoodle at 5:06 AM on May 12 [1 favorite]

Based on your follow-up regarding her “non-medicinal” extracurriculars: have you tried a break from any/all of them while troubleshooting the school or fatigue issues? I have a much-younger sibling with sensory processing issues, and the notion of full-day accelerated school (in what sounds like an unsupportive environment) + piano + aikido + swimming + now OT sounds about three times what he could handle at age 6-7. If a school switch is still not in the cards, I think more than in-school accommodations with this particular school may be necessary, at least for the time being. Little E may not show fatigue or behavioral issues (or may not show them in the same way) in contexts she enjoys, but it’s still adding to her load.
posted by LadyInWaiting at 6:13 AM on May 12 [5 favorites]

I don’t doubt that your child has some things going on and may benefit from therapy and definitely could use support at school. But I also, from your three questions, feel like you are choosing your fear around other schools and boredom get in the way of your understanding that she is at a school that has encouraged systems that are demeaning and borderline abusive. Those reports coming home every day were shockingly ugly, and if I were getting half of that at work I’d be exhausted...for quite some time.

I was thinking about this post and I remembered this TED talk. What if your daughter is really basically okay, and it’s her school that’s messed up? Does she have trouble anywhere else? Is it just that a 6 year old can’t sit still?
posted by warriorqueen at 7:12 AM on May 12 [3 favorites]

What if your daughter is really basically okay, and it’s her school that’s messed up?

If that’s true, I imagine we’ll figure it out in the coming school year, a day late and a few thousand dollars short. It’s a possibility I’m bracing for, but I’d like to give this place some more time before pulling the plug, for a variety of reasons I don’t really want to spell out here. I know that if we wind up deciding to quit next year, I’ll kick myself for hanging on so long, so Mr. eirias and I are taking every opportunity to praise her successes, love her as hard as we can, and encourage strong out of class relationships with peers who like her; we know that if it is actually the school that sucks, we need to work extra hard to inoculate her against the ways it’s failing her, and I credit AskMe for getting me to take that seriously. (We have really turned things around at home now, just like I said we would.) But if we pulled her before seeing how a request for accommodations shakes out, we would not think we’d done everything we could to make it work, and I think we’d regret that, too.

Does she have trouble anywhere else? Is it just that a 6 year old can’t sit still?

That’s hard to answer because I truly don’t know what I should expect from a kid her age. Her piano teacher was frustrated by similar behaviors for a chunk of the year, but regular practice at home combined with copious positive reinforcement did the trick and she’s kind of a model student now. Ditto aikido (and the teachers didn’t even comment much there; at one point, I preemptively apologized to one of them for her squirrelliness, and he seemed surprised and said she isn’t even on his list of most squirrelly kids). So that’s a couple strikes against the school, because it’s clear she can learn, but she’s not picking up what they’re putting down. Sometimes she gets overexcited on play dates and gets a bit loud and boisterous and we have to ask her to simmer down, and that’s mildly embarrassing and stuff, but the kids do come back. My in-laws are politely dissatisfied with her physicality in much the same way that they are habitually politely dissatisfied with everything else that reflects on my performance as a wife and mother, but I take that stuff with a grain of salt. My own parents are bewildered by her activity level every time we visit, but they are basically sessile (as was I). So, I really don’t know. I suspect it’s the combination of can’t sit still + can’t shut up that really galls the teachers, and further that she seems really unusual to them because it’s a heavily selected population.

Thanks to those who’ve suggested plausible accommodations so far. I do hear the rest of you, really. I know there’s basically no AskMe question that can’t be answered with “DTMFA,” but as a family, we’re not there yet.
posted by eirias at 1:47 PM on May 12 [1 favorite]

If the school receives federal funds, your kid will be better served with a 504 plan. A 504 is a list of accommodations and modifications provided to people with disabilities and has the same protections as any ADA law. it holds the school legally responsible for ensuring your daughter gets what she needs to work at the same level as other kids.

If you have proof of a qualifying disability and the school gets federal funds, you should ask for this.

Down the line if you discover teachers and staff are not giving her a special chair, or she's punished for her disability, etc., it's FAR more effective to go to the principal and remind them of the 504, a legally binding document. Without the 504, you're just another parent asking for things for their special snowflake child, which is often the staff perception.

This way, you can see if they follow the 504. If they don't, then you need to move her. Public schools do not mess around with these.
posted by yes I said yes I will Yes at 5:50 AM on May 13 [1 favorite]

> Public schools do not mess around with these.

Oh, they totally do.

If she's tired: can she go somewhere and take a break? Not necessarily a nap, but just a lie down.

People seem to have really high standards for her, ones many six-year-olds would have problems meeting. Sitting still, not slumping, being calm on playdates, not using the wiggle chair to wiggle in. I wonder if this is the best school for her.
posted by The corpse in the library at 2:16 PM on May 13 [1 favorite]

re: "That’s hard to answer because I truly don’t know what I should expect from a kid her age."

Perhaps some books on developmental stages would interest and help you?
Yardsticks: Child and Adolescent Development Ages 4 - 14
Ages and Stages: A Parent's Guide to Normal Childhood Development
posted by purple_bird at 4:55 PM on May 13 [1 favorite]

In my teaching experience, public schools implement 504 plans and give them a lot more weight than general parental requests, but I apologize for implying every school acts on them and they will solve all your problems.
posted by yes I said yes I will Yes at 2:33 AM on May 14 [1 favorite]

A follow-up. This story took a few turns as the school year ended. Our OT visited school to do an observation, and the reception she got from the guidance counselor appears to have been chilly verging on unprofessional. However, we met today with the administrators and Little e's classroom teacher for this year, and that teacher in particular sounded really open to most of the interventions the OT recommended, and the principal clearly wants to say yes to anything that can work within the confines of the school's spacetime continuum. It was incredibly difficult for me emotionally, but I let Mr. eirias (whose job involves difficult conversations) take the lead for much of the meeting, and I actually think it went about as well as I could have hoped. I still don't know if it will work out there, and I'm still mad about some particulars, but I understand more about who our partners are and we have a list of things that the key players have agreed to try.

I also set a clear boundary for the first time: I stated I felt that last year's behavior sheet intervention had been actively harmful, that it was not okay, and that I felt I'd failed as a parent in letting it go on for months. I did not get a good response from the guidance counselor in the moment and I didn't really get an apology either, but at the end of the meeting I got empathy from her, like real empathy where it was clear she felt bad, and not that maddening fake "I'm sorry you feel that way" that I've received from her before, and, you know, under the circumstances I'll take it.

Anyway, I'm posting this to complicate the story, I guess. The doubters here were right, but also wrong, and the end isn't written yet. More complications to come once the school year is underway.
posted by eirias at 12:36 PM on August 13

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