Creatures of Comfort

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I am a mother of three amazing, talented, strong, self-assured, and couragous young women who between the three of them have a million stuffed animals!  Some still have the honor of sleeping on their beds, some live in rubber maid containers in our basement, and one or two even have a spot on the shelf in my office.

I won’t lie, I bought most of them.  I am a sucker for a stuffed animal of any shape or size!  I myself even have a few in my room and one I still sleep with every night.  We all have something that brings us comfort.  During periods of stress and upheavel it is a natural response to seek out things that bring us comfort.  Some people run or exercise, for others it can be a food or warm drink.  A routine, a place, or even a favorite book can help bring comfort.

It took me awhile to figure out that for Nora it was not just one thing that brought Nora comfort but what we liked to call her entourage.  From the time she was very small Nora would carry multipy things around.  Usually it was a blanket and a couple stuffies but sometimes it included a couple books, a pillow, and her hat.  When I look back it was during times of stress or upheavel that the entourage would get bigger.  As she got older our patience became thinner.  We would often end up in a battle with her about not bringing the entourage places like a fair, the church, or the mall.  The more our frustration increased the more her need for the entourage would increase.  Shortly before she was diagnosed with SPD one of these battles encured in which I would not let her bring her stuffies in the van.  She had, what we like to call a category 5 meltdown that lasted hours.  Now I had two other children so I knew what a temper tantrum looked like.  I also knew that as quickely as they came once the kids knew I was not giving in the temper tantrum would end and they would carry on.  This meltdown was not a temper tantrum but so much more.  Of course, as every parent knows once you have said no you can’t go back (well at least you shouldn’t but lets face it we all have).

Then one day it hit me, the entourage was her need to find comfort in a world that overstimulated her.  She had such little controll over the way her body percieved sensory input that the entourage was her coping stratagy.  It also hit me that what did it matter if she brought her entourage wit her.  Sure it was often a huge inconvenience for me because lets face it we all know who was holding the entourage when she was climbing a slide or swing on a swing.  However, if it meant that she could cope better in the world then I would take the inconvenience any day.  So after that day we found away to bring her entourage with us in a more convenient way for us both.  I purchased a small backpack that was only used for her special things.  We set a limit that only what could fit in the backpack could come plus one blanket.  The backpack went everywhere and as she grew it often only went from the house to the van and back.  During more stressful times, like our military moves, she was allowed two bags which I promise you where filled to the rim.  As her needs changed so did the contents of her backpack.

Today Nora no longer needs her entourage unless we are overnighting.  She has three faithful friends who she has slept with since she was 4.  Over the years there have been other stuffies, a weighted starfish for her lap, books that were torn and ragged, and the same green blanket my mom made for her when she was a baby.  There also was the bunny hat.  For a few years Nora wore the same wool hat regardless of the tempature or season.  I can’t tell you how many times I had to bit my tongue in the middle of summer when she would be wearing it.  Or the times I would sneak into her room after she fell asleep to take it off and kiss her forehead.  The hat sits beside her bed on a shelf still today…..just in case she needs it.  Today this amazing young lady can use her words to articlutate what she feels and knows how to cope in a world that overwhelmes her so her need for the entourage is gone.

We all love the things that bring us comfort and ground us in a world that is often chaos. For children with SPD and honestly I believe all children that need for comfort is greater.  They don’t have the language yet to explain their feels and they have such little control over their lives so these objects give them a small bit of comfort.  So for as long as Nora will let me I am happy to tuck lamby, bunny, jagzy, and her in at night.  It brings me comfort to know that she has these creatures of comfort to help her in this world.

J

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Surviving School

Growing up I loved school!  I loved new clothes, new friends, and new adventures.  Generally, I enjoy being around people and despite struggling in school the first 6 years, I still loved it.  After I became an education assistant I learned that not all children love school.  For some it is almost painful to be there surrounded by the chaos, the noise, and the people.  So although school is a must I learned the in order to help these children I would need to learn some coping strategies to teach to them.

As neurotypical individuals we can filter out much of what we receive through our senses.  We are able to quickly processes the important information and discard the non relevant stuff.  We almost effortlessly block out things like the humming of a fridge, or the taping of a pencil on a desk across a room.  For children with a Sensory Processing Disorder, this process is much more difficult.  In some cases their senses misinterpret the information received or they can not filter out the unwanted stimuli so they become over stimulated.  They can be sitting in a classroom trying to listen to a lesson but the lights are too bright, someone is taping a pencil, and another person is kicking their feet. They are unable to block all the extra stuff out and this makes focusing on the teacher extremely mentally exhausting.

When Nora was in preschool she would often hid under a table when she began to feel overstimulated.  Of course at the time we had no idea why and it didn’t make sense to us.  Normally, she was an outgoing child and loved meeting new friends.  At a playground she would run up and play with anyone but put her in a classroom and she hid or avoid others.  For her the extra stimuli in a classroom like the lights, people in a smaller area, and hum of a fan or computer left her feeling overstimulated.  The hiding was her way of trying to give herself a sensory break and regulate her body.  Obviously, she could not spend her entire academic career hiding under desks so even before Nora was diagnosed we found ways to help her cope in the classroom.  It has not been easy and we are always figuring out new ways as she ages and the classroom demands become greater.

In the early years things were much easier!  In a kindergarten setting there should be a quiet place or tent that children can use to help with self-regulation.  One program I have seen used in schools is the engine program.  Teaching all students that their bodies are engines and they can run too high, too slow and just right.  You also teach them how to regulate that engine so they know when and how to self regulate.  When you are outside it is ok for your engine to run high but in the classroom it is important to keep the engine at just right.  If you are running low in gym class you would need to learn how to get your engine to run at just right.  The strategies that are taught in lower elementary can be used all the way through school.  Each grade level will bring new demands and as children age they become concerned about what others think so they tend not to want to stand out.

Self-regulation is something even adults struggle with, especially in a world that moves fast and loud.  I am not an expert by any means on teaching self-regulation but I have learned a few things along the way.  The most important part is being self-aware and identifying when you are becoming overstimulated.  From an early age I used a sensory language with Nora.  I could tell when she was becoming overstimulated well before she could.  I also knew it meant she was headed for a melt down so I would often head it off with a break.  The idea of a time out is often used as a consequence but for children with SPD a time out is a life saver.  In our house we would always have a quiet place she could go.  Under the stairs, in our closest, or in a tent in the basement.  Somewhere dark, quiet, with soft music or a basket of books.  There would always be a couple stuffed animals and a large bean bag chair.  I would either ask her if she needed a break or tell her she was having a break.  Which phrase I would use often depended on what she had been doing up till that moment.  For example after school if I can tell she has had a long day so I would simply say, “When you get home I will give you your snack in your break spot”.  At home while playing with her sisters and things were beginning to get out of hand I would say, “do you think you need a break?”.  Today there is no special spot anymore but she does have a tent over her bed and she knows when she needs some break time so I feel like all that hard work on both our parts has paid off.

In a classroom setting some strategies we have used over the years include having a sensory break put in her IEP, using a small weighted lap blanket to help her feel more grounded, and ensuring that she uses recess outside to help regain balance.  This past week Nora started high school which is a whole new ball game.  No recess, crowded hall ways, and longer class time.  The transition is going well and some strategies she is using are having a break when she gets home to decompress and avoiding heavy traffic areas at lunch (i.e. the cafeteria).  I have suggested going for a walk outside with a friend or hanging in the library.  The important thing to remember is that every child with SPD reacts differently so finding strategies that work will take time and a lot of trial and error.  Once you find what under and overstimulates your child you can use a counter measure to help both inside and outside of the classroom.  Talk to your child’s teacher and to your child.  It will be a team effort and an ever-changing process.

I wish that school was not something Nora had to survive and I hope she looks back at parts with found memories.  In the meantime we carry on with strategies and accommodations to help her learn the best way she can.  Keeping open lines of communications with her teachers and using all the resources that are available.  When we asked her tonight how she thought her first week went she responded in true Nora fashion, “It wasn’t as bad as I thought and I can tell my teachers like me!”.  I love her self-confidence and honesty!!

J

 

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

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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Equine Therapy

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Long before Nora was diagnosed with SPD she had a love of animals.  Her first love was birds and for a solid 6 months every trip to the library required another fact book on a type of bird.  For parents of young children you know that we spend a great amount of time reading and let me tell you there is nothing dryer to read than a non fiction book about birds.  However, the bird books led to long walks in the woods birdwatching with her dollar store binoculars and my camera.

When Nora was 4 we welcomed our golden retriever Buddy into our family.  From the very beginning these two had a bond and spent many hours playing together.  I would often find the two of them snuggled up on the girls mini couch together watching tv, looking at books, or sharing a bowl of Cheerios.  I once caught the two of them under a fort of blankets in which Nora held a dog treat in one hand and nail polish brush in another.  Yes this 80lb dog sat there patiently waiting (and drooling) for his treat while he had his nails (and pretty much his entire paw) painted in bright pink nail polish.  This, of course, led to a discussion on why we don’t paint dogs nails and me spending the rest of the afternoon removing said nail polish.

When Nora was in the 5th grade, which was a couple of years after she was diagnosed, we began to see a decline in her self-esteem.  Her world was becoming increasing louder and busier as the demands in the classroom increased as did the class size.  That same year an acquaintance who had a couple of horses asked if our girls were interesting in coming over and riding her horses.  We jumped at the chance to spend an afternoon a week with horses.  The girls loved hanging out in the barn and riding the horses in what was a very informal setting.  Nora especially seemed to really connect with the horses and found a passion for herself.

We moved the summer between grade 5 and 6 so that fall once we were settle Nora began taking formal riding lessons.  We watched her thrive!  Riding gave her so much confidence and self-assurance in a way that we had never seen before.  The summer between grade 6 and 7 we moved again to Comox, B.C. and Nora began a riding program through the Comox Valley Therapeutic Riding Society.  It was a 6 week-long program in which she learned a lot about how our mind and body are connected with the horse.  If we are tense and having a bad day then that can affect the horse.  They gave her techniques on mindfulness and being in the moment with the animal.  She then joined a vaulting program at the CVRS, which she loved.   Watching her stand on a moving horse was amazing and somewhat hard on my heart.  At the same time she began weekly lessons at stable where she learned how to ride english style.  The coaches at Sprout Meadows also taught her about horsemanship and she learned how to care for her horse.  That year Nora grew tremendously as a rider and as a person.  We watched her self-confidence blossom and her connect with horses in a beautiful way.  She had found her passion so that during the times when this world overwhelmed her she had something to look forward too.

This past year we moved again…..there is a pattern but last one honestly!  It was hard for Nora to leave the Comox Valley.  Although we lived in town, my parents had 6 acres of land in which Nora spent a lot of time at.  It was also hard for her to leave Sprout Meadows behind because she found a place that gave her peace.  After arriving in Ottawa we searched for a place Nora could ride at.  We tried many different stables that were all amazing but Nora was just not connecting.  Then I heard of this place called Stillwater Stables.  The owner uses the Parelli method to teaching.  The Parelli method is basically natural horsemanship in which you use behavioral psychology.  You are taught how to communicate with your horse using language, love, and leadership.  To say that Nora fell in love with this method would be an understatement.  It is so different from anything she had ever done before and although she really missed jumping she had found something wonderful.  The upside also for Nora is she gets to spend a large portion of her summer back on Vancouver Island where she can ride at Sprout Meadows.  So she gets the best of both worlds of horses!

Nora’s connection with the horses she rides is beautiful.  We watch her with is thousand pound animal and she is so calm and peaceful.  When she rides it is like no one else is around her.  Even after the hardest week she will wake up Saturday morning and head out with a smile on her face.  Living everyday in a world that overwhelms you can be draining on our mind and body.  Nora says that when she is near a horse it helps her to restore balance.

Not every child with SPD will make connections with animals.  The trick will always be finding what helps to restore their balance.  I have found that for most children with SPD it is something natural or in nature.  Activities that are outside seem to work best and for many children they are solitary activities.  Not that they have to be alone but activities in which you are working on your own goal.  Like running, biking, cross-country skiing, horse back riding, or hiking.  I do highly recommend trying therapeutic riding for children with SPD.  In larger centers there will be a therapeutic riding association and for smaller areas it will be something you will have to work harder to find.  They offer amazing programs and our older two daughters have volunteered in the program out west.  They, like Nora, learned a great deal and found volunteering theraputic also.

As for our horse loving girl she will continue to ride, learn, and grow!!

J

Comox Valley Therapeutic Riding Society    http://www.cvtrs.com

Sprout Meadows    http://www.sproutmeadows.com

Stillwater Stables    http://stillwaterstables.ca

 

 

 

 

 

 

Advocacy and the importance of teaching it…..

Advocate:  a person who speaks or writes in support or defense of a person,cause, etc.

We live in a world where information is handed to us at extremely rapid rates.  The world that was once a big place continues to become smaller and smaller each year.  If we want to know something we google it and within seconds our answers (whether accurate or not) are there.  The debate as to whether or not this is a good or bad thing has taken on a new meaning and at times can be overwhelming.  However, one thing the access to information does, is it allows us to understand the world around us better.  Once you have done the weeding out of the accurate information from the not so accurate you can open your eyes to a world of possibilities.

For parents who struggle to understand things like SPD, they can now access information, support, and research at a faster rate.  It allows them the ability to better advocate for their child and find other parents who have similar struggles.  As parents we all advocate for our children.  When they are small and have no words we speak for them.  As they grow we teach them how to advocate their needs for themselves and for those around them.  One of the greatest gifts we can give our children is the ability to advocate.  It is a skill that they will carry with them for the rest of their lives and be able to use for those who can not advocate for themselves.

I was recently questioned about sharing Nora’s story and the effects it could have on her future.  The internet can be a dangerous place and once a story is shared it can not be taken back.  We have spent time teaching our children about the dangers of the internet and how to use this technology well.  In turn, they have taught us a couple of things too.  Sharing our daughters story and our story as her parents is not something we do lightly and without discussion.  In the end the benefits of advocating for all neuro-divergent children outweighed the risks to Nora.

You see there is a greater lesson here to be taught.  Not taught to Nora but to the world she lives in and the people who live in it with her.  A lesson taught for her and the thousands of other bright, capable, diverse young people who live everyday with SPD and other disorders.  Disorders that make them no less than you or me but in fact make them better people who will one day be world leaders, university professors, CEO’s, Wal-Mart greeter, car sales people, and more.  A lesson that will teach the world that what you do with your life is not about how much money you make, what job you do, or how big your house is.  It is about the lives you made a difference in and the people you helped along the way.

When Nora was little my husband and I spent many hours advocating for her.  We were patient and kind with those who needed to learn about Nora’s path.  As the years have gone by we have spent more hours teaching her to advocate for herself and more importantly how to advocate for her classmates and friends.  Our time and energy has paid off and I have watched this young lady confidently and respectfully let people know what she needs and at times the needs of others.

Last week she was to attend a school wide awards ceremony but she told me she knew she could not sit through it all.  The noise level would be too much for her and asked if she could skip it.  I explained that she was getting an award and should go.  Nora told us she didn’t care about the award and didn’t want to go.  This went back and forth for a bit until I explained to her receiving the award was not just about her.  There were teachers that had invested a lot of time, energy, and love into her this past year.  They wanted to see her receive her award and well her old mom did too.  In the end she agreed to slip in at the end and recieve her award.  The amazing staff at her school worked hard to make this happen and as she received her award she had a smile from ear to ear.  After Nora told me she was glad she went and I told her I was proud of her for advocating for what she needed.  The award she recieved was for endurance because she worked so hard all year-long.

We all advocate for the things we feel strongly about whether it is for a loved one or a cause we believe in.  When I googled the definition of advocate I discovered words like supporter, fighter, crusader, and campaigner.  This made me smile because I would use any of those words to describe Nora.  These qualities are what have helped her get where she is today, they have helped her become who she is and that we would not change for the world.  Now if only I could stop her from campaigning for a hamster!!

J

 

 

 

Forts are fun and a warning sign….

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The Fort!  What child does not like to take blankets, pillows, and in Nora’s case a beach umbrella and make a fort.  Using chairs to drape the blankets over, stacking books on the edge of a dresser over a corner of blanket to hold one end up.  Household items soon become a cacoon of comfort for children of all ages.

Nora became a master fort builder by the age of 5.  She could whip together a fort in any room in our house like it was nobodys business.  We knew, even before diagnoses, that she needed this space to be alone.  Though honestly with 3 small kids in the house somedays I crawled in there with her!  When she was four years old we got a golden retriever puppy.  She and buddy would spend a lot of time in his crate together and more often than not she would be in there alone and Buddy laying in front of it.   She loved it!!

The forts were not always a good thing and as Nora started full time school I noticed a change in her behaviour.  She would spend all her time in a fort and if I took the fort down she would have a huge meltdown.  At times she would refuse to come out and eat or let anyone in with her.  After her diagnoses we learned that it was a coping stratagy to help her self-regulate.  At the time she shared a bunk bed with her sister so we put a blanket across the bottom bunk and turned it into a sensory place for her with twinkle lights, a small basket of books, and some stuffed friends.  Our OT helped us create guidelines so Nora understood that she had to come out to eat but also knew she didn’t have to share her space.  All of these changes helped and fort building went back to being a fun activity she could do in the family room with her sisters because when she needed it she had her own sensory space.

As time went on we learned to watch how much time she needed to spend in her sensory space.  At certian times of the year that need increased like at during the Christmas season or the last month of school.  It helped us to know what we could do to help Nora during these overstimulating times in her life.  We could make changes to her school program or schedual to help her get the most out of the time she was there.  We knew not to try and take her to the mall during the month of December.  More outside time and less inside time becasue nature is the best way to help kids with SPD.  Even today if Nora sets up a fort I know it is a signal that something is up.  Only now she can articulate what is on the go.

This week is the last week of school and she can tell us she is overwhelmed.  That the energy level and noise level are too high for her.  For some students they love this time of year when fun activities are going on but for Nora it throws her off.  So we talk to her learning support teacher and find out what she has to be their for.  Then we pull her out for the things that are optional.  Over the years I have had educators who are so supportive and others who question my decision to let her miss school.  Although their input is well meaning it often comes from a place of misunderstanding.  Is life always easy, no absolutly not.  Should Nora learn to handle this very overstimulating world because it is not going to change?  Yes, to a degree she needs to learn to handle and survive the world around her.  However, I try to explain it this way.  If Nora had only one arm would we make accomadations for her so that she could have meaningful participation in our community as a whole.  Absolutely!!  If I forced her to go to school at times when she was overstimulated, like during a sports day, she would come home ready to shut down and at times will take a day or two to bounce back.  Leaving her walking through her days not really being able to make meaningful connections with those around her.  So there are times we make accomadations for her so she can make meaningful connections and have good positive school experineces the rest of the time.

Life with SPD has not always been easy.  There were many nights I went to bed in tears because I didn’t know how to help this kid.  I could see her at times falling between the cracks and crying for help.  The forts are just one example of a sign of disregulation.  At times Nora would develope a tic or have huge melt downs.  During these meltdowns she would actually vocalize that she didn’t understand why she was so upset.  There were times Nora would appear confused and cling to us.  As time went on we learned what to watch for and how to make changes in her sensory diet, school day, and routine to help her.  Nora, herself, often showed us what changes needed to be made and we learned to follow her lead.  When she was first diagnosed we lived beside my parents.  Nora spent a lot of time with them and often when her older sisters would have friends over she would pack up her stuffies and walk over.  It was just the two of them and they would provide her with a quiet place to play and do her thing.

I asked Nora once recently if she could explain why she doesn’t like class trips, award ceromonies, and parties.  She smiled and said “That would be hard for you to understand because you love people.”  She went on to explain that when she is at school, a party or a mall she feels someone is poking her with needles.  It phycially hurts and then she gets confused.  Sometimes she can block it out but then it leaves her exhausted.  So she only wants to do it if she has to like regular school, family parties, or a special friend.  Also anything outside is much easier she said because wide open makes everything better.  I asked her if she feels like she is missing out or sad to miss things.  In true Nora fashion her response was, “I know my friends love me whether I am there or not”.

So as the school year comes to an end and Nora’s world becomes a little more her speed she will take down the fort in her bedroom (which right now a Canada’s 150th Umbrella).  We will enjoy lazy mornings, quiet moments, and me trying to talk her into a trip to museum (something she loves as long as here are not too many people).  Nora is spending most of her summer at her grandparents farm in B.C. where the world slow, quiet and she can be outside all day.  And when the new school year starts we will watch for forts!

J

 

Finding our way….

Long before Nora was diagnosed with SPD we knew something was up.  We could never put our finger on it and often we questioned whether we were looking for something that wasn’t there.  When you have a start to life-like Nora had there are so many follow-up appointments with specialists who are always watching, gauging, and measuring.  Is the child meeting milestones, are they developing typically, and what is their growth rate?  At times I wondered if we were better to just let Nora be and see where the chips would fall.  It was a balancing act of letting her grow at her rate and making sure she was getting the best start to life.

The fall after Nora turned three she started a preschool program two mornings a week.  In part because the preschool was right in the school where her big sisters attended and in part because this momma needed some me time.  I won’t say she loved it at first but gradually she made friends and loved her teachers.  Her biggest challenge was transitioning from one thing to another and making eye contact.  This left us a little puzzled because at home she did both well.  Looking back I think it has more to do with the noise level during transition times and her ability to know that if she made eye contact she would have to do what was being asked as she couldn’t pretend she didn’t hear.  The year after she turned four we continued with the same preschool and moved her up to four mornings a week.  The second year was more successful and I believe it was simply her comfort left with the teachers.  Nora is always slow to warm up but once she feels safe in her environment she thrives.  It was during her second year of preschool that the teachers recommend some OT.  Nora’s pencil grip was weak as were most of her small motor skills.  At that age Nora loved to be moving and very rarely stopped except to sleep and bath (something she did 2 or 3 times a day).  So when she didn’t want to color or do cut and paste activities like her sisters did at that age I just chalked it up to her need to move.  Again that balance of letting her develop at her own pace and supporting her.

In the fall after her fifth birthday Nora started Kindergarten.  She was so happy to be able to take the bus with her big sisters.  It was a small class being taught by a wonderful teacher with 30+ years experience and it was only half days!  Nora continued to have little “Noraisms” as we called them.  She loved to stack things and push them around in laundry baskets, she bathed 2 or 3 times a day, she would line things up, and would watch the same movie over and over again.  At this point she had yet to fall asleep on her own so I either lied with her or one of her sisters would crawl in with her.  She still wiggled and jiggled a lot and we had yet to have a meal where she didn’t fall out of her chair at least 5 times (it felt like more).  All of these things and much more made her who she was and along with it she was a very easy-going, happy child who often loved to play alone.  That spring before she turned six her teacher recommended we hold her back a year.  She believed Nora just needed more time as she still could not recognize letters of the alphabet, write her name, and struggled to do any table work during class.  All skills that were vital for the first grade.  If you are going to retain a child, kindergarten is really the only year you can do it.  We were living in US at the time and were due to be posted back to Canada so it would have been the perfect time.  At this point the school had done some testing on Nora and she was showing an above average IQ but a below average processing speed which basically showed she had a learning disability.  However, she was young and testing like this is not really valid until after the age of 7 as children can have huge developmental gaps when they are young.  The gap narrows as the children reach 7 and beyond.

So come September we decided to go ahead and put Nora in first grade with some support.  Children with learning disabilities do not benefit from being retained as they will always struggle and struggling with your peers is one thing but struggling with children younger than you can be damaging to the self-esteem.  At this point we thought we were just dealing with a learning disability, which after the start Nora had, was small peanuts to us. As the year went on it became evident there was much more going on.  Nora began to withdraw often coming home from school and either melting down or wanting to do nothing but watch the same movie over and over again.  Over night we watched her sink into herself and loose the spark in her eyes.  This same year we had moved and I had gone back to school full-time to become and educational assistant.  We were lucky to live beside my parents and they too saw the change in Nora.  At first we thought it was the move and my return to school but as time went on my gut told me it was more.  This was the poster child for resiliency.  This same year Nora also had an amazing learning support teacher who was working with her and she too felt there was something more going on that we were missing.  So I made an appointment with her pediatrician who had only being seeing Nora for a few months at this point but had her file and whom I have to say had sixth sense when it come to children.  So after Christmas he sent Nora to the Autism screening clinic in Victoria (living in BC at the time) in hopes that we could get some answers.  After a preliminary assessment the psychologist strongly felt we were not dealing with autism but was puzzled.  His recommendation was an occupational therapist and he had one in mind.

So in the February of first grade Nora met the woman who would change everything.  The OT spent several weeks with Nora doing assessments and she had us and other significant adults in Nora’s life (grandparents and teachers) fill out checklists and make our own observations.  Then in April she sat us down and laid it all out.  I will never forget that day because it was like a light bulb went off.  All those “Noraisms” were amazing coping strategies that she had created for herself.  The OT explained that she was amazed that Nora was doing as well as she was considering her sensory deficits and needs.  She told us whatever we had being doing was allowing Nora to come up with healthy coping strategies and she was going to give us the tools to help Nora feel more comfortable at school.  We learned how to teach Nora things like self-regulation (at home she was always high and at school always low we needed to find a middle ground) and advocacy.  Nora’s world began to make sense and we were able to explain it to our family and friends.  Having a sensory processing disorder and a learning disability made classroom learning almost impossible for Nora.  The noise, lights, and constant transitions overwhelmed her.  Her own need for pressure and movement were not being met by having her sit at a desk all day.  She needed to go to school and would for the next 11 years of her life.  So how do you help someone do something they have to when that something is in a sense painful for them to do.  Let me tell you it has been a lot of trial and error finding the balance Nora needed.  That year we started with giving her breaks throughout her day in the learning support room.  We got her a weighted lap buddy who I might add was a starfish (hence the “Senory Seastar” title).  The lap buddy gave her that pressure she craved while sitting at her desk.  When she came home from school we did sensory activities to help regulate her.  It was not easy and let me tell you it was all trial and error but by the end of the first grade we were on our way.

Every September since we have had to create a plan to support Nora and then re-create it a couple of times throughout the school year.  Every year it gets a little easier and she takes control of the plan a little more.  There have been years of great success and years I have had to pull her out and home school her because of lack of support from school districts.  We have moved 5 times since then with her dads military career and every time I get a job in the school she is at as an EA or I volunteer in some other capacity.  Overall she has been so blessed with the educators who have come into her life.  Nora is quiet and well-behaved at school so she can easily sneak under the radar and when she was young that was her goal.  Now she has a better understanding of advocacy for herself and that education is a must.  This spring she had her third psychoeducational assessment and the results are much the same as the two previous.  Nora’s IQ is above average and her processing speed is below average.  Basically for the typical person we have eight lanes of traffic going into our brain and eight lanes coming out.  In people with processing speed delays they have a one lane highway going in and one lane coming out.  All the executive function is there and works better than most but they need more time to process.  Much like Nora’s kindergarten teacher said, “she just needs more time!”.  Nora is also dyslexic which makes reading a huge challenge but her comprehension of the written word is above grade level so we are grateful for audio books.  Lastly, is the SPD which is not assessed by a psychologist but by an OT.  So putting all three together continues to make learning in a classroom environment a huge challenge for Nora.

However, she does it everyday and usually with a smile on her face!  This past year has been an exceptionally great year for Nora.  She is attending a private Christian school where the class size is small (less noise), the environment it welcoming and caring, and the learning support teacher is nothing short of amazing.  This year she has made leaps and bounds in her education, ability to advocate, and making of friendships.  It is still hard for her and at times there are things she just can not do.  Things like field trips or award ceremonies give her anxiety but we talk about it and pick the hard things she has to do and the hard things she can skip.  However, there are hard things she does that we thought she would never do like have all the girls in her class over for gingerbread decorating party and read out loud in class (which shows the comfort level she has in the class).  This bright, kind, smart young lady had come so far since preschool and I would be amiss in not mentioning a few key people who helped us get here.  It truly takes a village and we have lived in three different provinces and in the US so our village literally spans this continent!  We would not have found our way without you and for that we are grateful!  Miss Trisha, Mrs, Morris, Mrs, Hyham, Mrs. Skene, Mr. Craigon, Mrs. Davis, Mrs. Howell, Mrs. Inder, Mrs. Bouchard, and Mrs. Naftel.

J

Back to the beginning….

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Our journey with SPD began long before Nora’s official diagnose at age 6.  It began even before we welcomed our baby girl into this world.  In May of 2003 I was 32 weeks pregnant with my third child.  I had just celebrated my 30th birthday and was busy chasing around our two other daughters who were 2.5 and 4 years old at the time.  One beautiful spring afternoon I had a regular check up with my OB.  I was looking forward to an afternoon alone as my husband had taken the afternoon off to watch our other girls.  During the appointment my OB asked if I would pop down for another ultra sound as he was a little concerned with my size.  I had the routine 18 week ultra sound and at that point everything in this pregnancy had seemed normal.  I was young, healthy, and had 2 previous uneventful pregnancies and births so he was not overly concerned but just wanted to make sure this baby was not bigger than what we were expecting.  I remember being more concerned with my lost alone time at Chapters than the technician finding anything wrong with the baby.

The next day my OB called and said that something had come up in the ultra sound and asked us to head to Kingston to see a neonatal specialist  (we were living in Trenton, ON at the time).  Our OB had already spoken to the doctor in Kingston and he was expecting us that afternoon.  When we arrived we met with the specialist and he did is own ultrasound to confirm what he already knew.  Our baby had a condition called “Duodenal Atresia” which was a blockage in the fetus’s duodenum which increased the level of amniotic fluid (or polyhedramnios) in the uterus.  This left me at a high risk of pre-term labour and this explained why I was so big.  In utero, Nora was fine but the blockage meant that nothing was going past her stomach and this was increasing the size of her stomach.  It meant that soon after she was born she would need surgery to correct the blockage and medication to help teach her bowels or duodenum how to work.  During a typical pregnancy a fetus swallows amniotic fluid and it travels through the digestive system which gets the system ready for after birth and maintains a good level of amniotic fluid.  I won’t lie, our heads spun a little that day in trying to understand all that was being told to us.  On top of that the neonatal specialist recommend draining some of my amniotic fluid off immediately so that I could make it to at least 36 weeks.  We also learned that day that this type of blockage is a marker for down syndrome so they recommended genetic testing so we could plan and prepare for bringing a special needs baby home.  So I had a litre of amniotic fluid drained off, gathered all the information they gave us and we made our way home.  That was hands down one of the longest days of my life.

A week later we were back in Kingston for another ultra sound and to make a plan for the coming weeks in hopes of carrying this baby as close to term as possible.  The doctors in Kingston knew Nora would need to be transferred to Sick Kids in Toronto immediately after birth so they gave us the option of continuing my prenatal care in Toronto at Mt. Sinai Hospital (which is across the street from Sick Kids).  We agreed and for the next 5 weeks we made the 2 hours trek into Toronto for ultrasounds and blood work. On one of those trips a neonatal specialist discovered a hole in Nora’s heart (which is another marker for down syndrome) and that had them putting me on partial bed-rest and draining more amniotic fluid off.  The doctors felt it was vital to get me as close to term as possible so Nora would have the best chance after birth.  It was during my 36th week of pregnancy that we received the amino results which showed that Nora did not have down syndrome and we, as well as, our team of doctors all breathed a sigh of relief.  We were also given the option of finding out the sex of the baby.  This was exciting as we had never found out the sex of our first two until they were born but felt we deserved a little lift up!  We were both so excited to hear we were having another girl!!

On June 17th, 2003 during my weekly check up our head neonatal specialist felt it was time to bring this baby into the world.  My amniotic levels were high again so I would need to have them drained or be induced for labor.  So we went home and packed our bags, called the grandparents, and made our way back to Toronto.  3 days later at 6:05am with a team of specialist and my husband in the room Nora arrived!  I didn’t even get to see her as she was whisked away to be stabilized.  With this type of blockage her stomach was 9 times larger than it should be so it needed to drained of amniotic fluid.  She was struggling to breath as the stomach was pushing on her tiny lungs.  I sent my husband with her and called my parents who lived in B.C. so they could talk to me until I was able to see Nora.  An hour later Byron pushed me in a wheel chair to the ICU so I could meet our little girl.  I had two typical pregnancies and births so I knew what it was supposed to be like.  I knew what it felt like to hold your baby moments after they are born and to breastfeed right away.  Sonseeing your tiny baby hooked up to a million cords with machines beeping and alarms going off was so heartbreaking for me.  However, from the very first moment Nora grabbed onto my finger I knew she was a fighter.  So my husband and I prayed and cried and prayed some more.

5 hours after Nora was born she was transferred to the NICU across the street at the Hospital for Sick children.  Less than 24 hours after I gave birth I discharged myself from the hospital and walked over!  At 3 days old Nora underwent surgery on her duodenum.  As it turned out it was not actually a blockage but her stomach and duodenum had not actually grown together.  It is a congenital birth defect that affects 1 in 10,000 babies with  75% of those babies having down syndrome.  The hole in heart was ruled as an innocent heart murmur by the cardiology team and they would watch it as she grew (by the time she was one it had closed).  After the surgery Nora began to thrive and although she was fed through a GI tube I could pump and she was fed breast milk.  Her stomach began to shrink down to normal size but because of its enlarged size she often vomited.  She was given a medication that helped her intestines do the job they were suppose to do and by 2 weeks she was off the medication and things were looking good.  So good I decided to go home for the night (I had not been back to see the other girls since Nora was born) and leave my husband with Nora.  As I left he joked that she would be fine and he was looking forward to some daddy/daughter time in the NICU.

The next morning my husband called and said I should come back sooner than later.  Now he was a search and rescue pilot for 20 years so he is pretty relaxed and doesn’t often panic but I could hear the panic in his voice.  Thankfully for us we had his parents close by so off I went.  Nora had developed a serious infection in her blood stream and had become septic.  To make matters worse it was a yeast infection and the infectious disease team was culturing it but could not find an antifungal medication to treat it that was approved for pediatric use.  Over the next day Nora’s health rapidly declined and we were told to prepare for the worst as her organs were small and not handling the infection well.  She had undergone 2 blood transfusions in hopes that would help.  The Infectious disease team found a drug that would work but had no pediatric dose so they had to create one based on Nora’s weight.  This drug had serious side effects but at this point it was our only hope.  Over the next couple days Nora’s tiny little body made small but steady improvements.  Enough so that a plan was put in place to continue with this treatment over the next 3 weeks.  The drug needed to be infused through the IV over a 4 hour period everyday.  As Nora’s health improved we fell into a NICU rhythm and felt ourselves begin to relax.

At the age of 5 weeks Nora was though the worst and was thriving.  She was still being fed through a GI tube but was gaining weight and had her first laugh in the Hospital for Sick Children.  A week later our nurse practitioner walked in the room and asked if we were ready to take this beautiful baby home.  So we began the discharge process of learning to feed her, what to watch for, what not to do, and made a slew of follow-up appointments.  A part of me was so scared to bring her home but the other part was so grateful.  So on August 1st we left the hospital and took our little family home.  The days and weeks that followed were exhausting but we were so happy we didn’t care.  The older girls had missed us and needed lots of love and attention.  I was still pumping but after a day of Nora being home she latched right on and never looked back.  Within a month we had fallen into life with 3 kids.

I look back on that time and often wonder how we did it.  I know we didn’t do it alone as we had the support of two sets of grandparents, friends, and the best medical team in the world.  We had our faith, prayer, and each other.  In the months that followed Nora thrived and her big sisters fell in love with her.  Our oldest would hold her for hours if we let her.  Our middle daughter loved to make Nora laugh.  Nora gained weight fast and although doctors had told us to expect her to be slow to gain weight she tripled her birth weight by her first birthday.  We had been prepared that she may not reach milestones at typical age but she proved them wrong again.  Though she liked to take it to the far end of each range she always made it under the wire.

Sometimes I look back and wonder if there were signs of SPD early on but in truth we were so busy I would not have noticed.  It was not until Nora hit about age 2 that we began to see the signs.  However, I do think all that played a factor in her development but when you know what the outcome could have been a little SPD is nothing.  In just over a week our little fighter will be 14 years old.  She will go to grad dinner she doesn’t want to because it will overwhelm her but she better than anyone knows how to do hard things.  Today that sweet, beautiful, baby is thriving and growing and changing our world just by being who she is.  I look at all my girls and my heart fills with pride.  The big ones for all their love and support of Nora, for teaching her the things we parents can’t.  And pride for a little baby who turned our world upside down (and still does today) and taught us all how do to hard things.

 

J