Tag Archives: sensory processing disorder

Occupational Therapy, take 2.

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Well, last week Booga had an appointment at a new therapists office to determine if he does now qualify for some sort of therapy.  It’s been a long time coming, as he has started running away from sunday school and having to leave his other preschool program for lack of… ‘cooperation’, we’ll call it 😉  Thank goodness for friends who know what I’m talking about because someone gave me a phone number and within days I not only had an appointment, but very good news; he was accepted!

It’s been obvious to me for awhile now that his symptoms are not getting any better, although the vest does help in certain situations.  He has started climbing again; he’s been found higher than my head on 3 occasions in the past 2 weeks, besides the times I’ve caught him climbing the outsides of the stair railings.  He’s been tackling, crashing and head-butting again; things I thought we had under control for the most part.  And he’s been reacting to foods and socks more than usual.  We’ve all been battling some serious illness and the big kids have been home for most of the past week, so part of what I’m seeing might just be sibling overload, but still, I’m seeing patterns that I was hoping would not return.

Part of my rush to get some therapy for him involved the note I got a few weeks ago about signing kids up for preschool.  Booga will be 5 in October, so he definitely has to go to a regular preschool next year.  And I just canNOT see that happening right now.  What I do see is him getting kicked out, and me wondering what to do with him!  I see him running away, crashing into other kids, climbing the toys, and refusing to do any work that involves sitting down.  In my teacher mind, I see him as the child that no teacher wants.  And that breaks my heart, because you couldn’t find a more lovable, creative, intelligent little boy!  But he definitely does not fit the “school” mold.  So it’s time for us to help him figure out how to control himself…at least a little bit more!

Thank goodness, this time around the therapist was more than ready to see that his sensory issues were not secondary; they are getting in the way of his “behavior modulation”.  Big words to say that trying to filter the senses make it hard for him to remember the rules.  And he is SO excited about going back to play in the big gym and work with his therapist.  I can’t wait to see what he’s doing tomorrow, and am so glad there is a place where he can be himself and not be misunderstood.

Therapy Part 2 for Squirt is, unfortunately, going to be a bit longer, because she cannot go during school hours, and has to be put on the waiting list.  Argh.  Because things are definitely not improving on their own on her front either.  A disappointing report card, a complete lack of control in the chewing problem, and the upcoming standardized tests have us hoping that list will go down quickly!!

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SPD, What is that??

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So now we get to all the things we have learned.  Starting with what exactly this means.  SPD is Sensory Processing Disorder, or Sensory Integration Dysfunction.  Here is the official definition from the SPD Foundation ( http://www.spdfoundation.net/ ), one of my favorite resources:

Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.”

The best description I’ve found to describe this to people is that kids with SPD are born without a sensory filter.  So all the things that we see, feel, hear, taste, and smell come at these kids, and they can’t figure out which ones they are supposed to pay attention to.  So they react in one of two main ways; they either shut down completely, or they overreact and try and find a way out.  Some people with SPD are called Sensory-Avoiders.  Squirt is in this category.  If she doesn’t like the way something hits her senses, she tries to get away from it.  That means not wearing the shirt with the itchy tag, or the shoes that don’t fit right.  It also means covering her ears in loud places and trying to get out of crowds.  The other group of people with SPD are called Sensory-Seekers.  Booga is much more in this category, although he does some avoiding, too, mainly with things on his feet and loud sounds.  But these kids tend to notice that things don’t “feel”, so they try harder to get the sensations they are looking for.  They swing longer, spin faster, climb higher, hit harder, squeeze tighter, and seem to never stop because they are trying to get their systems to start to process these senses better.

Imagine entering a small closet to find it crowded with people, bright work lights shining in your eyes, loud music coming in, everyone talking at once, the smell of burnt popcorn nearby, and the wrong side of the Velcro stuck to the tag of your shirt.  This is the overwhelming feeling these kids are trying to process every day.  No wonder they act out!

So how do we deal with it?  Well, with Occupational Therapy, mostly.  Of course, Booga didn’t qualify, so we’ve mostly had to make it up at home as we go, but we are going in for a new evaluation next week, so we’re crossing our fingers that he qualifies this time!!

Occupational Therapy sounds like something for grown-ups, doesn’t it?  But it has nothing to do with your job, except that a child’s job is to grow and learn and cope, so I guess it helps with that, right?  Squirt’s OT involved a lot of swinging, balance, handwriting, building core strength, etc.  Unfortunately, we’ve had to take a break from that since she went back to school last year, but we are on a waiting list and hoping to get her back in soon.  In the meantime, we’ve had some success with her in horseback riding lessons, which helps her focus and works on her core and balance.  Booga’s OT at home program is intense, and VERY hard to keep up with, and I have to admit to not doing very well at all since Scooter was born.  It involves a lot of massage, compressing joints, hanging, swinging, flipping upside down, spinning (oh so much spinning!), heavy work (anything that makes him lift, pull, or push heavy things – this can be helpful when I have housework to do!), squeezing clay or Playdough, and jumping, bouncing or crashing (his favorite, of course).  If I do the full course of OT, all 3 times a day, we will spend at least 2 hours a day on this.  Doesn’t seem like much, but with 4 kids, 3 sports, a nursing baby, and homework (Heaven help us, the homework this year!!), sometimes getting dressed and having dinner ready is about it for my day!

So what have we learned?  Well, we’ve learned that having a clean, uncluttered space is very important for Squirt (guess I should pick up the house, huh?); that she will probably never sing and do motions with her friends, but she is still enjoying the music as she stands there; that handwriting is not as important as I’d like to think; that calm and quiet is probably not in our future; that processing all the day’s input and shutting off to sleep is sometimes just impossible; that shoes really aren’t necessary; that being loud just means they are hearing things we aren’t and trying to be heard above it all; that spinning faster can actually slow you down; that responding to someone calling your name means shutting out all the other input first; that sitting still is not a requirement for dinner, homework, or even for sleeping!; and mostly, that they aren’t being naughty, rude, disrespectful, or ornery – they are just trying to learn to cope in a world that is truly overwhelming.

Beginning our Adventure, part 3

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So, back to our story…

Just to review, it was the summer of 2009, we had a soon-to-be first grader who was not responding as we’d hoped to her ADHD medication, a 3 year old who was becoming the cop of the family (everything must be exactly, evenly fair, and he counts EVERYTHING in his head, so don’t try to trick him!), and an almost 2 year old who never slept. Everything in our lives was fast-paced, high-energy, full of drama, and we were very, VERY tired.  Something was definitely going on here.

About this time, my mom gave me a book to read that she thought described Squirt.  It was called The Out of Sync Child, by Carol Stock Kranowitz.  The first paragraph described children who seemed to be average, everyday kids, but were always on the outside of the circle.  These were kids who were intelligent, friendly, and seemed “normal”, but then refused to participate in group activities.  This jumped off the page to me as one of my biggest frustrations with Squirt.  As anyone who knows her will say, this child is the exact opposite of shy.  She will talk your ear off, loves to hug and cuddle, and is a goofy, fun-loving kid.  But every time she was asked to participate in a group activity, she froze.  Like the end-of-her-dance-class-career recital, where she stood on the stage and refused to dance because the 2 girls next to her ended up on the wrong spots.  Or the Jr. Firefighter “class” that she waited weeks for, only to plant her feet and refuse to join the other kids in the hands-on part of the fun.  Or the preschool graduation where she wouldn’t sing and do motions with the rest of her class.  This baffled me almost daily!  I couldn’t imagine how any small child wouldn’t want to join in fun games and singing!  Isn’t that what all “normal” kids did??  But this author was saying there was a reason for that, and I was intrigued.  I read the entire book in 1 night, and decided that this was definitely describing my child!  And maybe my youngest, as well, just in a different way.  And our journey into the world of Sensory Processing Disorder began.

We made a decision at this time to homeschool Squirt for first grade.  There were many reasons, but the main one was that we were going to try and get a better diagnosis and therapy program, and it was just easier to deal with all of this if she wasn’t in school all day.  After discussing what I was finding with the pediatrician, she agreed that there seemed to be more going on than the ADHD, and recommended an evaluation by an occupational therapist.  For Booga, we were able to go through Indiana’s First Steps program, but for Squirt we needed to find a OT location that would test her.  This took about 6 months on a waiting list and many, many, many phone calls, but we did finally get in.

Booga’s evaluation took place at home, where the therapists showed up, and within 5 minutes said “no way, this child can’t have SPD.”  They did agree to stay the hour, though, and finish the evaluation.  At the end of the hour, they had a completely different answer.  “Yes, he has many sensory issues, but he is too ‘developed’ and ‘intelligent’ to receive services.”  Great, thanks.  My child has a problem, but you can’t help me with it.  That’s exactly what I wanted to hear.  They were appalled at his lack of sleep, but seemed to think that a simple change in our routine would fix it.  They noticed that he had no idea how to be gentle, but acted like we could just teach him that.  Needless to say, I was less than impressed and more frustrated than ever.  I continued to read and research on the internet on my own to find answers for him, but it was a long road.

Squirt did finally get in to a center to be evaluated.  Her results were much different; obvious SPD, sensory-sensitive type, lacking in several areas, and starting therapy once a week immediately.  Her areas of concern were sensitivities to light, sound and touch, balance, core strength, and handwriting (no surprise there!)  She started therapy right away, enjoyed it a lot, and seemed to be improving, slowly but surely.

During her testing, I mentioned to the therapist that Booga had been evaluated and that they couldn’t do anything for us, and she told me to let them evaluate him and see if they could qualify him.  So back we went (he was 28 months by then) and he was given the same test as his sister.  By the time the therapist got to the 48 month developmental guidelines, she looked at me and said “I have to stop now.”  Same results; yes, obvious SPD, sensory-seeking type, several things that jump out at us, but he is just too “developed”.  Fortunately, they were at least willing to set up a home program for him and teach us how to do his therapy at home.

We did consider at this point having Boyo tested as well, but he really seemed to be dealing with any sensitivities he might have on his own, so we did not.  So far, that seems to be the right answer, although the further I get into this world, the more I realize that he is also sensitive, and probably would also be considered SPD, he is better able to adjust on his own.

Next week I will get into exactly what SPD means, and how we are learning to understand our children, and our world, in a whole new way!

Dear McDonald’s Workers,

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When I ask you kindly to put the ketchup on the bottom and the cheese on the top of my dear son’s cheeseburger, please do not look at me like I’ve sprouted 3 heads.  It’s so much more important than you realize: ketchup + cheese = slippery.  And slippery is something he CANNOT eat.  No, he’s not being difficult, he’s coping.  And I’d like him to eat more than french fries today!

In the world of SPD, I am very lucky as far as food issues go.  Booga actually likes most every vegetable he’s ever met, and he loves protein bars, so even when we’re having a bad day, I know that he will get everything he needs.  But we do have our little “preferences”.  I actually don’t like to use that word, because it makes it sounds like he could choose to ignore those preferences and just try it like any other kid.  Those of you with kids like mine are laughing, because that’s just not possible.

Actually, when we eat at home, he does very well, and we don’t make special plates for him; he is expected to eat what we eat.  We make adjustments when possible.  Booga doesn’t like anything slippery, slimy, stringy, or that will make his fingers messy.  Leftovers are a dream come true for him, because they are either cold or slightly warm, and will not bother him.  Coffee filters are my best friend, because they keep his fingers clean and he can eat tacos and other messy things.  So, all in all, he eats VERY well for an SPD, texture-sensitive child.

But eating out is a different story.  And in a family of 6, with several sports, church activities, etc., eating out happens more often than it should.  For the first 3 years of Booga’s life, he really only ate french fries at restaurants.  Unless, of course, they were too salty or too greasy.  Then we discovered *why* he was turning his nose up at food we knew he liked, and started making small changes.  Like making sure chicken nuggets are not fresh; he’d really prefer to take them home and eat them cold or slightly warmed.  Or making sure his ketchup and cheese do not make his burger slide around.  Seems so simple now, but I still get those looks…

So, yes, I am the strange mom asking you to make a cheeseburger a different way.  But at least my boy will eat his lunch today!

A Day in this Sensory World

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I’ve been trying to get up and running for awhile, but feel overwhelmed with all the information I want to put together and share.  Finally decided that I would just sit down and write a post, sharing about an average day in our crazy world.

6:30 am: Mom and Dad up, start the music playlist for the big kids to get ready for school

…this is just a YouTube playlist of the kids’ favorite upbeat songs, 4 songs to eat breakfast  to, 3 songs to get dressed and make beds to, and 3 songs for hair, teeth, shoes, coats and backpacks.  The kids know what songs mean what, and it saves my voice from nagging in the morning!!

7:10 am: Squirt and Boyo leave for the bus, littles will wake up soon.

…Time to make some eggs for breakfast.  We always try to start the morning with protein; fortunately Squirt likes a scoop of protein powder on her cereal, so I don’t always have to make eggs before she leaves.

*Note: this is not an everyday morning, as the big kids usually do NOT make the bus, and someone needs to drive them to school at 7:50.  Makes everything a little crazier with all 4 up at once, but 6:30 is awfully early…

8:00 am: Cleaning up from breakfast, time to start Booga’s therapy.

…This morning he wanted the vibrating massage instead of the brush, but giggled too much, so he just rubbed his feet on it while I gave him a regular massage.  Then on to compressions (he calls them “pulls”), spinning until Mommy is more than dizzy, and crashing.  This means every cushion on my couch gets thrown on the floor so he can jump off the couch and body slam into them, repeatedly.  Oh well, who needs a nice couch, right?

8:30 am: Still working on cleaning up, catching up, checking messages, and feeding Scooter.

9:00 am: Time for Preschool with Booga.

…He likes to start with a busy bag, and unless I have something special planned, I usually let him pick through and choose one.  Then we do “carpet” activities and some workbook pages.  Somewhere in the middle Scooter will need a little rock for his morning nap.

11:30 am: School is done, Scooter is probably up again, and it’s time for lunch.

…If I’ve been a good planner, Booga’s lunch is packed in his lunchbag just like the big kids, and he thinks it’s a great adventure to sit and eat from his lunchbox.  Today it is not, but he doesn’t notice.  Mommy eats leftovers 🙂

The afternoon time is spent playing, watching tv, or going for a walk.

2:00 ish pm: Scooter goes down for his second nap, and Booga helps Mommy with some chores.

…Sort of.  He’s really just running to the window waiting for the big kids to get home…

2:40 pm: Big kids get home and have downtime; playing or watching tv with a snack.

…I really like for them to get outside, weather permitting, and today looks good for that.

3:30 pm: Time for our second therapy session.

…We try to include the big kids in the this one, since Squirt really should be doing all of this, too, I just don’t always have time to do both of them.  Today we are going to do puzzles in the hallway with the scooter board, then I will have him do the sit and spin for awhile.  If I can, I may try and get him on the outside swing, but that depends on Scooter.  REALLY wish we had an indoor swing for this!

4:00 pm: Try to get Booga to play quietly so the big kids can do their homework.

…This is the biggest stress for Squirt, and we still haven’t found a quiet space that still lets me help her and keep her on task, or any kind of motivation.  Last night’s math homework went over 3 hours and I made her quit there.  Hoping today will go better.

4:30 pm: Try to make dinner.

…Tonight is supposed to be Chicken Parmesan, but I don’t see enough chicken.  Might have to get creative.  Hopefully Scooter is sleeping again now, but probably not.

5:30 pm: Dinner time.

…Hopefully.  This can be a stressful time of day, as Booga doesn’t eat anything that feels “stringy” like shredded chicken, or that will get his hands messy.  It’s not that he doesn’t like it, he just CAN’T, and we have to adjust.  It’s hard to make other people understand this, so eating out or with relatives can be tricky.

6:00 pm: Start the bedtime routine.

…If we do it right, this means starting with playdo or clay at the table, a big, warm bath for each of them, a massage with lotion for Squirt and Booga, at least lotion for Boyo, depending on his mood, and books in a darkened room.  All told, this routine could take us 2 hours, but we aim to have them all in bed by 7:30.  This is why my dinner dishes are never done 🙂

8:30 pm: Scooter will fall asleep now, but by now Mommy is usually so tired that I just cuddle with him and watch tv until my own bedtime.  Helps relieve the stress of my day, but doesn’t help my house get clean.  Oh well, I’ll work on that tomorrow…