What SPD is not…..

When Nora and I started this blog our objective was to bring awareness to a disorder that affects 1 in 20 children.  To give educators, parents, caregivers, friends, siblings, grandparents, uncles, aunts, cousins, and the children with SPD knowledge so that they can better understand what SPD is and more importantly what it is not.  Each child with SPD is unique in the way they experience touch, taste, smell, movement, and other sensations.  Some sensations are more intense for one child and less intense for another. Some children just don’t process sensory information typically which can make a cotton pair of socks feel like sandpaper.  One of the most vital pieces of information to understand is that living with SPD does not mean you are the disorder.  Nora has a Sensory Processing Disorder, it is not who she is.

To understand what SPD is I think we need to start with a solid definition:

“The senses provide information from various modalities—vision, audition, tactile, olfactory, taste, proprioception, and vestibular system—that humans need to function. Sensory processing disorder is characterized by significant problems in organizing sensation coming from the body and the environment and is manifested by difficulties in the performance in one or more of the main areas of life: productivity, leisure and play[1] or activities of daily living.[2]Different people experience a wide range of difficulties when processing input coming from a variety of senses, particularly tactile (e.g., finding fabrics itchy and hard to wear while others do not), vestibular (e.g., experiencing motion sickness while riding a car) and proprioceptive (having difficulty grading the force to hold a pen in order to write).”

Thank you Wikipedia!  I know it is not always a great source but in this case they nailed that definition!  One of the best parts of this definition is that it talks about the parts of life that can be affected with SPD.  This is important because I think we all have a little SPD in us, I know for me I do.  However, for a true diagnosis the difficulties must be affecting one or more areas of life….school, work, home, play.  As an Education Assistant I have seen children diagnosed who should not be.  I have also seen kids that would benefit from a diagnosis (mostly because with a diagnoses the support at school can be put in place).

Another important thing to remember about SPD is that it can be a stand alone disorder or it can co-exist with another disorder.  Children with autism often have SPD as well but the reverse is not likely.  In Nora’s case it is a stand alone disorder, though she was screened for ASD (Autism Spectrum Disorder) at the age of 6 but did not meet any of the criteria except the sensory component.

So now that we know a little of what SPD is lets talk about what it is not.  To start with it is not a disease or a medical condition that can be treated.  It is not contagious nor is it curable.  A child will not outgrown it or look back and think of it as being a phase.  It is not anxiety or a mental illness.  It does not make a child less or not able to learn and grow.  SPD is not something they cannot control (they can learn to be sensory smart kids).  It is not something to be ashamed of and it is not something that defines a child.  It is not bad parenting or something that is made up to explain behaviour.  It is not hopeless and it is most importantly not an excuse.  As the parents, teachers, and caregivers it is our job to help children with SPD become the best that they can be.  It is important to read and learn all that we can about SPD so that we can help our children and other children with SPD learn and grow.

Everyday Nora faces a world in which her brain struggles to organize information that comes from her senses.  She can hear crickets outside her bedroom window at bedtime which make her mind race instead of relax.  She craves salty foods, wears socks and crocs, hears sound of lights overhead, and notices the when someone is tapping a pencil across a room.  However, despite all the struggle she has learned to manage her SPD through occupational therapy (when she was younger), education, and coping strategies (many of which she created herself).  Recently, Nora has a psycho-educational assessment for her learning disability.  One of the things that the psychologist was most impressed with was how diligent Nora works despite her struggles and also how self-confident she is.  The psychologist asked what our secret was as her parents and our answer is simple.  We normalized SPD!  We taught her that we all struggle with something in life.  We all have things we are exceptional at and things we struggle with and neither define us.  SPD is not a person it is something that people can have.  

Every child has the potential to be great and do great things in this world.  We can not define them by a disorder or condition they may have.  We do not limit their potential based on a diagnosis or lack there off.  Our role as parents, caregivers, and educators is to encourage them, to teach them to think for themselves, to understand that each child will grow and learn at their own rate, and to advocate for them (and teach them to advocate for themselves).  In the words of a great man…..

“Everybody is a genius.  But if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid.”       Albert Einstein

J

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The wonders of vacation…..

Summer vacations!  Who doesn’t love warm summer nights, roasting marshmellows on the fire, and a sun that seems to never set.  Of course in reality it also means late nights, lack of routine, and a diet that seems to consist of junk food (although there is a lot of fruit eating too).  For children who with SPD it can mean their world is turned upside down.  I learned when Nora was very young some tricks to help make summers for her and us more enjoyable.

I am blessed that when I am working I have my summers off.  In part it was why I choose to become and Education Assistant.  I love spending summers with my girls and I espeically love not making lunches.  My being home allowed for Nora and her sisters to slow down after a busy school year.  For us to find adventures in our backyard or doing local activities like summer reading programs at the library or visiting muesums.  I could pick times during the day when I knew that these public places would be a little quieter and not as busy.  Much of our summer was also spent outside either playing at a local playground or hiking a trail.  On the days when I knew we had something coming up that would be harder for Nora to handle, like a big family gathering or a birthday party, I could keep things low key for her during the rest of the day.

During the summer we also often travel to visit family and friends who live out of province.  Travelling with Nora has always been an adventure and we learned early on to keep our expectations realistic and that there is no such thing as “too many” stuffed animals.  We have also made 6 military moves with our girls the longest being from Vancouver Island to Newfoundland.  They are professional travellers to say the least!

Travelling by car has always been a little easier for Nora.  The noise level is consistant and she knows what to expect.  From an early age she would use a blanket and create a fort over her carseat to the seat in front of her.  She has always ridden in the back row of our mini van by choice and enjoyed having her own little space.  At times the blanket would come down and she would gaze out the window or play with one of her sisters but when the world became too much she would retreat under her fort again.  Even now as a teenager the blanket still goes up although less and less with each passing year.

Travelling by air has always been an adventure but once she is cocconed into her seat it is smooth sailing.  Airports are noisey and often confusing for children with SPD so one thing I learned early on was finding a quiet place.  Airports are full of quiet areas away from crowds so we usually hunker down in one not too far from our perspecitve boarding gate.  Nora responds well to weighted things so having her carry a back pack of her own was the perfect way to give her the sensory input she needed as well as make my life easier.  Limiting what she brings is always been a hard chore as if allowed she would bring the kitchen sink (literally).  So we have three buddies she is allowed to bring as well as books, coloring supplies and snacks.  Oh and of course a neck pillow with beads in it as it too gives her some sensory input.

After arriving we lay down some ground rules for Nora.  Our families are very supportive so they know she needs a quiet place she can go off too whereever we are.  After she has time to recharge or decompress we do ask that she joins in the fun (even if it is not always fun for her) for short periods of time.  Now sometimes she will be apart of the action for hours and sometimes she needs to go off for some alone time more often.  Honestly, now that she older this part is easy.  As a young child it meant one of us needed to go with her.  So we would take turns doing some walks or laying down and reading to her in a quiet place.  We would watch for signs of overstimulation and try and step in before it got to that point where a meltdown could occur.  All of this is often easier said than done but I like to think we had a good balance.

The trip that stands out the most for me is our trip to Disney World.  Honestly, I was not even all that excited about going and it was pre diagnose of SPD but I knew it would not be easy for Nora.  She was 5.5 years old when we went with not only our family of five, but with my mom, and my husbands entire extened family.  The trip was huge success and in part it was because I knew going in there would need to be a lot of down time.  Having my mom helped as she, my husband and other 2 girls could do rides and activities while Nora and I hung out with the stroller.  (Yes I did rent a stroller everyday for a 5.5 year old and it was a life saver!)  Nora had her stuffies and used her blanket to make a tent over the top of the stroller.  She spent most of her trip to Disney in that stroller with a blanket over it.  She would occassionaly poke her head out or ask to come out and see a certian something or go on a ride.  However, most of the time she hung out in her tent, humming and playing with her stuffies.  One of the reasons the trip was so successful was because we didn’t push her to met our expecations of what we thought she should be doing.  I mean what 5 year old isn’t running around Disney taking it all in.  We could have been frustrated that she didn’t want to ride on “It’s a small world”, or been upset that she wasn’t enjoying every moment of this crazy expensive trip.  We choice to be realistic with our expectations!  Nora had a blast in Disney and when she walked up to Sleep Beauty to ask for her autograph I had tears in my eyes.  After all, the only request she had the whole week was to meet Sleeping Beauty and meet her she did.  Gave her a big hug, stood for a picture, and waited in a line for 40 mins to do all that.  And when I say waited in a line I don’t mean the kind of line that is quiet…..even my patience was wearing thin.

This summer we spent a month out on Vancouver Island.  There were many days of down time but also lots of family gatherings too.  All of which Nora handled beautifully.  The trick is always finding balance between busy days and down time.  The older Nora gets the more and more she takes control of that part of her life.  I am always amazed at her ability to balance her needs with the expectations of the world.  To be honest, she could put most of us adults to shame.  In part, that balance comes from knowing who she is as a person.  We all too often place unrealistic expectations on ourselves and on our children.  We knew very early on that Nora would never be the kid who went to Disney and wanted to do everything, see everything, and touch everything.  It was too loud, too busy, and too much for her.  So our expectations for how she would “take on” Disney World were lead by her.  I knew she would let us know what she could handle and what she couldn’t.  I knew her sisters would “take on” Disney in full force and when it was time to meet Sleeping Beauty they were right there with her holding her hand, standing guard, and making sure she got to do the one thing she truly wanted to do.  So even though how Nora visited Disney was different she was still very much apart of our trip.  We found balance and realistic expectations for a little girl who is often overwhelmed by the world around her.  Today she finds those things for herself with a little help from the people who love her.  🙂

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