I think my child has a sensory processing disorder. Now what?
January 30, 2015 2:25 PM   Subscribe

Micropanda (4) is sweet, bright, kind, and empathetic. He is also hypersensitive to sound, messy fingers, car motion, and water temperature, among other things. He had a rocky transition to preschool this fall - he behaves ok at school, but appears to exhaust his coping skills there, and has become volatile and meltdown-prone at home. Some deficiencies in his gross motor skills are also becoming apparent. I am becoming increasingly convinced that he has a sensory processing disorder with a motor component. On advice of our pediatrician, we have recently started him in once-weekly occupational therapy. I am wondering what other steps I need to be taking. Wall of snowflakes within.

Micropanda does not seem to have any intellectual or language challenges. He is bright, enjoys wordplay, likes learning big words, has good reasoning skills, can carry on a solid conversation. His teachers say he is a bit withdrawn socially, but on balance he seems to have a couple of friends and relate to other kids OK. At this point I am not especially worried about an autism spectrum disorder.

Micropanda has always been bothered by sticky or messy fingers and has had trouble with loud sounds for a couple of years now. If he becomes upset by a loud sound, it sometimes takes him a long time to recover. He's auditory defensive - if he thinks something might make a noise, he gets hands cocked and ready to clamp over his ears. Baths have become a nightmare - he has meltdowns about water temperature (more than barely lukewarm and he screams that it burns him), meltdowns because water might get in his eyes, meltdowns when it's time to get out because he's going to be cold, and meltdowns when he gets out and is cold. He often tells me I'm driving or braking too fast (I'm not). He is REALLY freaked out by the ball pit at the OT.

I've had vague concerns about his motor skills for awhile - he's always been overly cautious on the playground. It's not overly noticeable just watching him walk around but he's afraid to climb anything harder than stairs, will not climb down ladders or other climbers, and still has trouble dressing himself. He can usually (but not always) manage pants, socks, and underwear, but can only manage shirts on the very best of days. He has maybe a 1% success rate at catching beanbags lobbed very gently to him from 3 feet away. The OT is still working through her evaluation but has commented that he seems to have a poor sense of where he is in space and also that he has poor trunk control. Now that I think about it, he sat and walked on time, but while he was learning to do those things he used to fall backwards and hit his head on the floor constantly. He'd be standing up and fall over backwards, pivoting at his feet, and hit the floor headfirst.

He has little stamina and is tired a lot. We have a lot of evening meltdowns that have their roots in being tired, despite an early bedtime.

He's doing OK at school, but definitely not performing at his academic abilities. The thing that concerns me most is that at home he loves math (no, seriously) and language. At home on non-school days, he's all for challenges, it's great to do hard things, it's great to exercise your brain. At school, he retreats to safe, easy activities (practical life and art). He avoids challenges. He tells me that his teachers want him to do hard things and he doesn't like it. I hear a lot of "[thing] is too difficult for me." His teachers have mentioned that at school he has a short attention span and has a lot of trouble completing work. On the other hand, he likes to watch the other kids work and does seem to absorb some of what they're doing. He doesn't melt down at school but the teachers have noted that he is overly emotional. He has trouble settling for naps at school and in the morning, he often seems anxious about going to school. (He's fine by the time I drop him off.) Of particular concern is his teachers' comment that he often does not participate in the class's gross motor activities (dancing in music class, hopping/skipping/jumping at line time.) On balance, though, they do think he's happy.

My biggest question is, besides continuing OT, what should I be doing? Should I pursue some sort of formal diagnosis? With whom? See the developmental pediatrician (>6 month wait)? Full evaluation through the school system? I'm not sure that at this point he exactly counts as "special needs", but on the other hand I do have real concerns about how he'll do when he gets to first grade and if we can get out in front of that, I'd like to.

I'd also like to not be constantly walking on eggshells (e.g. I have to be very careful how much I ask about his day at school) and to be able to give the kid a bath. Yesterday we didn't have a single meltdown and it was the weirdest, most peaceful feeling. (Which only brings into focus that we're not in the best place, because seriously, he's 4, it shouldn't be a miracle that we got through a day without hysterical screaming). And then he had a spectacular meltdown this morning because his spoon was dirty. It had yogurt on it from scooping the yogurt into his bowl. The handle was pristine.
posted by telepanda to Human Relations (17 answers total) 6 users marked this as a favorite
1. Sorry for the failed bolding. /me is an idiot.

2. In case anyone has specific recommendations for providers, doctors, activities, or fun things to do, we are located in the northwest suburbs of the city in my profile.
posted by telepanda at 2:28 PM on January 30, 2015 [1 favorite]

[Fixed the bold tags, no worries.]
posted by cortex (staff) at 2:51 PM on January 30, 2015

I don't have children. The kids I work with are much older and in a very different (nonclinical setting). My POV comes from personal experience only.

I recognize a lot of what you describe, just with less socially disturbing external presentation. That being said getting a Tourette's/OCD diagnosis in college changed my life. No; it saved it.

The frustration of not knowing how to interface with the world, of being capable but saddled with an invisible burden I couldn't name, couldn't describe, couldn't find sympathy (let alone empathy) for was _terrible_. A little help with some anxiety, some counselling around coping strategies and a name to ascribe some difficulties to (other than my old go-to: personal failing) made for a seemingly overnight transformation.

I'm not one for over medicalization of subclinical symptomatology but holy hells, don't shy away from finding out more. Know your enemy; you can't prepare without knowledge. 'Round here the better people to talk to tend to be neurologists and neuropsychologists. If only to have the specialist eliminate spectrum disorders and the like rather than (as is more often the case here) a school counsellor or other semi-competant functionary.

As far as your second question goes, well, I'm far from your neck of the woods. That being said any kind of structured activity with strong ritual like, foreseeable hurdles and interactions is going to be great. I coach kids (both with and without disabilities) inside a swim club and have had success with all kinds of tactile-defensive kids (for example) I think because the water is always the water, never personal and if I do my job well entirely predictable.

Speaking with your OT may yield further information about local groups, summer camps, rec programs and the like. Unless otherwise advised by more competent counsel I would suggest that the idea is to identify and insulate specific triggers. Reducing large stressors may make more room for the little ones to slide by.

Best of luck - I hope you and your son can look forward to very many more pleasant outings.
posted by mce at 3:13 PM on January 30, 2015 [1 favorite]

Regardless of the wait (and maybe shop around?), developmental pediatrician is your best start. They may recommend the OT you've already started, but may have even better ideas...
posted by kuanes at 3:17 PM on January 30, 2015 [3 favorites]

How helpful is your pediatric practice? Often they know the terrain...which might be where your developmental referral came from. Make that appointment. There shouldn't be a penalty for canceling, and maybe you can call and fill in a cancellation once your paperwork is done.

Working with the school system can also get you connected and straighten out diagnoses in a cost-effective manner.

I'm in Maryland, and when I went through something similar with my oldest, I had great insurance and went to Kennedy Krieger institute, which I have great confidence in, though they can be clinical. The professionals out of Children's Hospital were a little too far, but was a little warmer. Great billing staff in both places, as education-related assessments were a funky billing area at the time. University of Illinois may have some options.

Look toward your teaching hospitals with pediatrics and check out reviews online. Another hack is find a support group for parents of of children with X and read up on new diagnosis experiences - YMMV
posted by childofTethys at 3:25 PM on January 30, 2015 [1 favorite]

A psychologist might be helpful, and having someone observe preschool might give some idea of whether this preschool is a poor fit for him. It may be a fine preschool for other kids but at this point it is well worth considering a different placement or childcare arrangement.
posted by internet fraud detective squad, station number 9 at 3:56 PM on January 30, 2015

To be clear, as part of an evaluation a psychologist might observe him in preschool. I know of multiple parents with children who were behaviorally difficult (meltdowns, problems adjusting to school) who improved significantly after switching preschools or changing to a different care situation.
posted by internet fraud detective squad, station number 9 at 3:58 PM on January 30, 2015 [2 favorites]

Do you think the fatigue and lack of stamina is a direct result of extra energy that has to go to processing the sensual information?
posted by Blitz at 4:02 PM on January 30, 2015 [1 favorite]

Get on the developmental pediatrician's schedule now or you'll be sweating the six month wait in four months ...

More later when I'm not on my phone.
posted by Eyebrows McGee at 4:24 PM on January 30, 2015 [1 favorite]

Wilbarger Brushes? You can order them from Amazon. Watch videos for the proper technique. They look so simple, but there's really an art for it.

Many OTs will put the child on a sensory diet. Not diet as in food, but as in sensory experiences. For example, morning routine would be 3 deep-pressure hugs, 5 minutes of dragging heavy books around on a blanket, 10 minutes of Wilbarger brushing, etc. Your OT would prescribe a specific routine for your child.

My child also has sensory experiences that she likes and enjoys. For example, she likes crashing and climbing movements. We got her into gymnastics and it has made a WORLD of difference. She can jump on the trampoline, swing on the rings and trapeze bar, do the bars, etc. It is a wonderful outlet for her. As she has become more focused on gymnastics and the sensory things that she likes, the sensory things that bother her have become much less of an issue.

My child also had trouble with being aware of where her body was in space. Gymnastics has been a godsend with this as well. She still has some things to learn, but her muscle tone and her body control has grown so much. She can even do cartwheels! So I highly recommend gymnastics! The nice thing is that they rotate through stations every few minutes, so if a child hates the bars they can wait a few minutes until floor stretching or rings.

We did go to an OT and went to the OT gym ... but gymnastics has helped MORE than the OT and my daughter feels more normal going to gymnastics vs. the OT. We no longer go to the OT and manage everything happily on our own. It's a learning experience for both parents and child.

A child psychologist who can act as a coach to teach self-calming techniques helps, too. My kiddo would start to get upset if her classroom was too noisy or if the lights were too bright. She's learned enough self-calming techniques that she's able to bring herself back from getting too upset. I'm not sure is 4 is too young? Maybe look for a play therapist?

Also, hiking. Nature. We call this "hitting the reset button." I'm not sure why this works, but it does.

And lastly, there are some things that you just gotta roll with. Right now my child only wears drawstring pants. With the drawstring on the outside. I'm not going to fight with her every morning about it ... so I just let her wear drawstring pants. Pick your battles.
posted by Ostara at 4:40 PM on January 30, 2015 [5 favorites]

Your kid sounds like mine, 14 years ago (SPI, sensory-seeking, auditory-avoiding, proprioception difficulties, plus ADHD and profound giftedness). I would recommend seeing a developmental pediatrician, or better yet, getting a full work up at U Chicago Children's Hospital Developmental and Behavioral Pediatrics Department. A lot of developmental disorders are co-morbid, and finding out earlier rather than later if your kiddo has other things going on will only be helpful in the long run.

I am surprised that your OT hasn't started him on the Wilbarger Protocol, but you might want to bring it up at your next visit. It's really quite remarkable how much it helps.

Just to add some reassurance: my kid is doing great. He is happy, healthy, well-adjusted, gets good grades, enjoys his extra-curricular activities, and will be going to college in the fall. It's sometimes hard to remember the days when he was four and was just a mess, every day. Life was so hard for him then. I truly believe that getting the right diagnoses and treatments when he was little paved the way for his success now. Please feel free to MeMail me if you need someone to talk to, and good luck!
posted by cooker girl at 6:15 PM on January 30, 2015 [9 favorites]

Your kid sounds like mine, who will be 4 in a couple months. To be honest, I haven't spoken to her pediatrician about it, and you're definitely giving me impetus to do so now. Gymnastics also helped for us, as well as a summer day camp on the lake. Swimming and beach time have also worked well.

With regards to preschool, we send her to a "progressive" one, which is largely child-driven and play-based. I don't think she'd be able to handle a more traditional/academic one.
posted by snickerdoodle at 7:30 PM on January 30, 2015 [1 favorite]

I'm wondering if he was a born a bit premature? I noticed when I was teaching daycare that the children who were premature at birth had more trouble transitioning from activity to activity. I helped them by giving them calm warnings several minutes before transitions.

Extra sensitive children can be helped in many ways. One of the quickest fixes is switching to a all-clear detergent and getting rid of dryer sheets. Just not having to go through life with constantly itching skin brings down their stress level so much.

Bath time is a struggle for all parents but for the parents of an extra sensitive child, daily bathes just are not worth the struggle. Wipe down the sticky places and save bathes for calm days. Ask your child to make two lists, naming three things that he doesn't like about bathes and three things that he does like. If he can't think of three things that he does like, help him out by adding something to the routine like extra cuddle time or netflix while in the tub.

If you haven't already, have his sight tested. My middle child hated to go anywhere and was very clumsy. She also has issues with her fine motor skills. It took a couple of doctors to find the right one but, she was finally diagnosed with having all kinds of odd-ball things wrong with her eyes. She went through vision therapy and now wears glasses. She was nearly blind before, seeing double vision in both eyes (4 images), and I had no idea because she is very smart and had taught herself how to angle her head to filter through it all. She is doing much better now after therapy.

Food allergies can contribute to the extra sensitive child's extra perception so pay attention to diet. My son couldn't have oatmeal. The day after eating it, he wouldn't be able to settle himself and he was just a mess. It took awhile to figure that one out.

It helps to have a quiet place for the extra sensitive child to chill out. Help him to build a nest in a corner or closet that is rarely disturbed. It should be clutter free but still have room for his favorite things. All textures should be soft and allergy free and the light should be just right. It should also be really quiet, away from the television or dryer.
posted by myselfasme at 12:12 AM on January 31, 2015

You should ask your OT about the Wilbarger Protocol and to show you how to do it at home. The idea behind Wilbarger is that it helps the person integrate those very sensory issues. My son had some pretty bad sensory problems --- think one drop of water on his shirt and he'd be tearing to get it off type things. He's improved greatly in part due to the OT he received in his preschool.

Which brings me to my next point:

If he's 4, you should do two things. 1) See about getting a full neurodevelopmental work up from a developmental pediatrician or a child psychologist skilled in testing. 2) Call your local public school system and ask to have him evaluated there as well. While he may be on target for language and academic stuff, if his sensory issues are impacting him socially, you may as well as see if he qualifies for services in your public preschool program. At the very least, if he doesn't qualify, you're no worse off than you are now. And if he does, then he'll just get more of what he needs. You win either way.

I wrote a blog post awhile back on how to get started with this process. And feel free to shoot me a message if you have any questions.
posted by zizzle at 7:08 AM on January 31, 2015 [4 favorites]

I came here to say what zizzle said. Take a two-pronged approach by engaging with both a developmental pediatrician and the school district. Getting a diagnosis for our son was actually a relief in many ways. By putting a name to his difficulties we felt like we at least had a roadmap for dealing with them, and it made services available to us through the school district. Early intervention is important in so many ways. If your school district has decent special ed services, the earlier they get to know you and your child, the better they'll be able to assist your child, particularly in the transition to elementary school.
posted by mollweide at 7:56 AM on January 31, 2015 [3 favorites]

Have you had your child's vision checked? Visually impaired kids often act very similarly. In any case it sounds like you're on the right track with OT. You can have a lot of fun with playing with pudding at high chair, diffferent textured balls etc if your lo is tolerating steps. Good luck.
posted by Kalmya at 9:31 AM on January 31, 2015

Switching to a Montessori Preschool in your area may help him out. The children at these schools get a lot of individualized attention, and the education model is made so the children can grow in to themselves and learn their own coping mechanisms. Classrooms are very inclusive and the children learn things to facilitate early childhood brain development. You can contact any school in your area and go on a tour!
posted by Kestrelxo at 7:20 PM on January 31, 2015

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