Category Archives: Beginning Our Adventure

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!

Beginning our Adventure, Part 2

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In the beginning of 2005, we moved from Montgomery, Illinois, to our new home in Lowell, Indiana.  Closer to work for me (I was teaching 1/2 day kindergarten at the time) and closer to our families.  Boyo was born in December of that year, and it was a normal, easy pregnancy, birth, and early days.  Our only adjustment with him was the jaundice, but I’ve come to find out that it’s a A+ bloodtype thing, and no matter how many children we have, they will all have A+ blood and start their lives with jaundice.  So Boyo came home with a biliblanket and got to glow like ET for a few days, but other than that all was well.  He was a very clingy baby, a big Mama’s boy, but extremely loving and cuddly.

Around this time the doctor wanted us to think about testing Squirt for ADHD, but with a new baby in the house and her only being 2, we thought we should wait a little longer.  We went through all the “rule it out” testing; hearing, vision, even a sleep apnea test overnight!  She was still participating in gymnastics, and we had a teacher there prepare a questionnaire for the doctor, who decided she DID have ADHD, but was too young for medication.  We instituted behavior management plans at home, tried sticker charts, toy time outs, and so many other plans I can’t remember them all, but nothing really helped for more than a day or two.

In 2007, Our third bundle of joy, Booga, joined the family with a normal birth just like his brother (and a biliblanket, just like him, too!)  Squirt was in preschool, I had 2 little boys at home, and life was crazy, but fun.

By the time she started preschool at 4, we knew we were looking at needing medication to smooth out the symptoms so the behavior plans could work.  She had more energy than most preschoolers, an enormous temper, and had absolutely NO tolerance for transitions.  For those who don’t realize, transitions are every single time you change from one activity to the next.  It’s hard to understand this until you see it; she would actually throw a fit if we said “turn the tv off so we can go play at the park” or “finish eating so we can go to Chuck E. Cheese”.  I had to tell her exactly what we were doing when we left to run errands, and if we had to add an extra store to the list, she would have a total meltdown.  It was confusing and very hard to deal with.

The doctor sent us to Riley Children’s Hospital in Indianapolis for an official diagnosis and medication plan.  It was a full day of evaluation, 1/2 with her alone, and 1/2 with us.  It was interesting that they pointed out things we never connected to ADHD, like bumping into people and lack of eye contact.  We started her on medication that week, and went through 4 or 5 different medications until we found one that worked well and didn’t make her a zombie.  It definitely helped; she was able to control her temper better, she seemed more focused, and we could actually get through most days without the total meltdowns that had been ruling our lives.  Better?  Yes, 100 times better.  What I was hoping for?  Not really.  She still didn’t seem to be able to stick to anything, had no sit, and didn’t seem to come out of preschool having learned any more than she had gone in with.

By the end of the year I had a preschooler who was easier to take out, but still needed a stroller or she would wander (or just run) off everywhere we went, a toddler who was slightly OCD (if you put the green lid on the blue cup, you can’t just switch lids.  You have to pour the milk back in the gallon, put it back in the fridge, wash the cup, put it back in the cabinet, and start over…) and a baby who (if you can believe it) seemed to have even more energy than his sister.  By 6 months he could tackle his brother to the floor as he ran past, was into everything, and never seemed to get hurt, no matter what he crashed into.  He also never slept.  Squirt was now taking Melatonin every night so she could fall asleep faster, Boyo was sleeping like a rock, but Booga was never, ever in bed before 11 or midnight.  Not that we didn’t try, but he was a jack-in-the-box, and waking up the other 2 just made it worse, so we quit trying.

Kindergarten began, and Squirt was very happy to be in the class with her best friend.  She was actually making some progress, but it was slow.  She was still reading at pretty much the same level she could read at when she was 3, and didn’t like it at all.  Her handwriting was atrocious, and didn’t seem to improve no matter how much we practiced.  She could add, but only conceptually, anything requiring memorizing she fought like a bear.  On the other hand, she had memorized most of the presidents, could name every state on the map, and knew more about animals than either of her parents.  So obviously the kid could learn!  It was a year full of frustration, as I got the weekly phone calls; “Squirt cut her hair in centers today” “Squirt was upside down ALL DAY today” “Squirt was eating pieces of the garbage can today”…

It became obvious to us that there was something else going on with her.  It also was becoming obvious that first grade probably wasn’t going to work.  I knew from others that the first grade reading program had very little phonics in it, which I could see she still needed, and the math program relied heavily on already memorized facts.  Put together with the fact that she still hated any kind of writing, and I knew first grade at school would just be more trouble than it was worth.  We decided to home school first grade and see what we could figure out.

About the same time we were noticing some crazy things going on with our little man.  The day he learned to walk, he stood up on the couch, walked off face-first onto the floor, and got up and did it again.  He had taken to running directly into the wall and bouncing off laughing, just to do it again.  We were learning to guard ourselves when he came at us, because nothing was EVER done gently; hugs were bear hugs, head butts were common, and jumping into our arms was never done with warning.  I also had a photo diary of all the places I had found him climbing; on top of the stair rail, the table, the counters, the higher the better.  No fear, no dizziness, no stopping.  And he only ever slept when he was completely exhausted, so we were really wearing thin!

Next week in Part 3, I’ll talk about discovering SPD, finding a diagnosis, and the therapy that became part of our lives.

Beginning our Adventure, Part 1

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Today I’m going to start at the beginning.  It’s quite an adventure story.

Many years ago, in a land far away…ok, not so many years ago, in Illinois…my hubby and I had bought our first home, gotten settled in, and were expecting our first, long-awaited child.  (the long-awaited is part of another story, we’ll save that for later)  Pregnancy was great, everything seemed perfect, until about 30 weeks.  Suddenly my blood pressure went sky high.  Diagnosed with pre-eclampsia, I was put on bedrest at home, started swelling like a balloon, and got very, very bored.  Week 36 brought about a hospital stay, as my pressure kept climbing and my protein levels were jumping up, too.  It was quite comical to kick every doctor that tried to test my reflexes (another symptom of pre-eclampsia was these huge reflexes!) but other than that, just more boredom.  We were hoping to make it a few more weeks, but after the protein test came back 400% higher than the week before, I was induced at 37 weeks.  My beautiful daughter, Squirt, was born on a very cold day in March.

Squirt was 6 lbs. 11 oz., a tiny little peanut, but seemed healthy and happy, and we were sent home on a Friday to enjoy our little girl.  She nursed well, but seemed to fall asleep right away, and we tried everything to get her to wake up and eat.  By Monday, the whites of her eyes were yellow, and we were back to the hospital with jaundice.  Squirt spent 4 days under the bililights with her little gauze sunglasses on, and was positively orange when we finally got to go home again.

By 9 pm the next day, we were back at the hospital, getting ready for me to have surgery to remove a very large clot.  Since we were on the women’s floor, baby was able to stay with me, and again, we thought this was the end.   As the nurse was discharging me the day after surgery, she went to look at the baby and told us we should see the doctor again, because she thought Squirt had RSV.  Having no idea what that was, we followed her advice.

Forty-five minutes after leaving the hospital we were right back where we started, as Squirt’s pulse-ox level was down to 78!! (anything under 94 is worrisome…)  Squirt had stopped breathing in the car on the way over, but choked it out before I could pull her out of the carseat.  In the hospital we listened to things like, breathing treatment, oxygen tent, helicopter flight to Children’s hospital…After a very, very long night, they were a bit more positive, and told us we were staying put, but she was still one sick little girl.  During the next 2 1/2 weeks I learned more about hospitals, IV’s, numbers, and breathing treatments than I ever wanted to know, but we finally got to take our little girl home the day before she was 1 month old.  Welcome to parenthood, huh?

Squirt had multiple breathing treatments a day, including steroids, for the first several months of her life, and grew like a little weed.  Our tiny little baby was not so tiny after that!  She was a happy, busy, crazy baby, and kept us on our toes.  By the time she could walk she was overactive, seeming to get into more than most toddlers, but she was our first, so what did we know?   By 18 months we had her in baby gymnastics, because it seemed to us like she had more energy to burn than most kids we knew.  By the time her brother was born when she was 2 1/2, the doctor asked me if we had ever considered that she might have ADHD.  Two and a half??  I thought they didn’t diagnose that until 7 or 8 at the youngest?

Fortunately, we had a doctor that listened well, and knew that we were trying all types of discipline plans, motivation charts, and STILL this child had too much energy.  At age 3 we went to Riley’s Children’s Hospital in Indianapolis, for a formal diagnosis, and our first attempt at medication.  At this point her symptoms were disruptive and hard to contain.  I couldn’t take her anywhere without a stroller with 5 point harness, and didn’t understand parents whose children just walked quietly by their side.  That wasn’t real, was it?  Well, not in our world, anyway!  After 3 different meds, we did find one that worked, and some of the major disruptive symptoms seemed to be controlled.  By now Boyo was almost 1, and it was a relief to think that things were going to get better.

In Part 2, I’ll fill you in on Boyo, Squirt starting school, and the birth of Booga!