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!

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Merry Christmas!

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Yep, I’m a little behind.  But such is life around the holidays, so here I am to make up for it.

Christmas has been a fun adventure around here.  We actually got to have a pretty quiet day on Christmas itself, just our “little” family, nowhere to go, no rush to open presents, no timeline to worry about.  The kids were, of course, very excited, but not over the top.  They even let us sleep in until almost 7:30!  Santa brought all the right presents, Mom and Dad did pretty good too, and everyone was very happy.

The next morning we left early to head to family in Michigan.  A little more excitement, lots of cousins and fun, and a few good meltdowns.  It’s inevitable in this situation…cousins don’t play quite right, or siblings get in the way of cousin fun…it just wouldn’t be a family gathering without a little fuss, but overall I think the kids did very well.  Our two big concerns with Christmas parties are Booga losing his “gentleness” control and Squirt falling apart when it’s time to go home (the worst transition of all).  I think Booga did pretty well, although he did have trouble leaving the new puppy alone, and Squirt managed to leave with only tears, and not a complete meltdown, so I’m going to go with progress and be happy about it.

The second day in Michigan we went to a movie with 9 cousins…Movies are great, and typically ok for the kids, (we’ve tried to avoid 3D so far, as I think that would be too much stimuli) but with all the added holiday hoopla, and the fact that it was an excited animated film, it was a little overwhelming for Booga.   He did well for most of it, switching seats once to sit with his Papa, staying (mostly) quiet, but at one point he did wander down close and try to touch the screen.  Oh well, at least it was a kid’s movie and no one really cared, right?

The day we got home from Michigan we had a package waiting for us that I admit I was more than a little excited about…Booga got a new “hug”!  We decided to order him a weighted compression vest, that we’ve been talking about for awhile, but didn’t really want to spend the money on.  Thanks to Swagbucks and Amazon, I was able to get it for less than half price!  So we spent the next couple days getting him used to wearing it for short periods a day, calling it his “hug” and his “police vest”.  He seemed ok with wearing it, but didn’t want it on for long, and has little tolerance for the weights pushing on him.

On our next trip to Michigan (3 days later), we went straight to an extended family gathering, where we got a chance to try out the “hug”.  I had him wear it right away for a little while, because it was a room full of sensory input, with lots of kids and people and noise.  He was less than impressed, but I did notice that he calmed down faster.  We took it off for dinner, he seemed to be ok, then present time began.  This set Booga off into what I like to call “spin cycle”…switching from spinning to running to break dancing, all while being VERY loud.  Back on went the vest (minus weights, since he complained about them) but definitely under protest.  That’s a hard call; I want to use it for his good, and not have it seem like a punishment, but I also want him to get used to wearing it when I know he needs it, even if he doesn’t want too…I guess that will just have to take some adjustment.  It did seem to help, but it was still a struggle to keep him from trying to take it off every five minutes.  Hopefully this will get better with time.

The rest of the weekend was filled with cousin time and Christmas, and everyone seemed to deal with it very well…We even left with a minimum of tears, so I’m calling it a big success!  All in all we had a great, stretched out holiday, the kids didn’t get too burned out, and we learned a little more about how to deal with sensory issues.  Sometimes it feels like we’ll never stop learning how little things like too much gravy on the turkey can bring an end to a peaceful Christmas, but every day we get a little closer to helping them cope!

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.

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!

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!

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…

Welcome to Living Sensory

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I’ve started this blog to help spread awareness about the thrilling, exhausting, exhilarating, frustrating, life-changing world of raising children with Sensory Processing Disorder.  It’s also a way for me to share the fun of our busy household and be here for parents who are new to this adventure.

Come back soon for more posts on our adventures, what we’ve learned, and what we hope to teach!