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

 

 

 

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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

Making “sense” of the world…

Each and everyday we are exposed to so many sights, sounds, smells, and things we touch.  Our brains use our senses to interpret the world around us and respond accordingly.  If it is cold outside we know to put on something warm.  When we are in a noisy mall we filter out the noise automatically and complete the tasks we are there for.  When children have difficulty with sensory processing, it means that form of sensory input is confusing, upsetting, or not meaningful to the child.  This difficulty in organizing sensory input can interfere with a child’s ability to complete everyday tasks successfully.

When Nora was first diagnosed I learned a great deal about our senses.  I, like the general population, was under the understanding we had 5 senses.  It turns out we actually have 7!  We have 5 external senses which are your traditional touch, smell, taste, hearing and vision.  Then we have 2 internal senses which need a little more explaining:

Proprioception ‐ an awareness of your body and where it is in space – so where different parts of your body are in relation to each other and to the objects and people around you. proprioception information comes through muscles, tendons and joint. Vestibular ‐ movement and balance and information comes to us through our inner ear. This tells us about how we move, balance and about gravity.

Just to make the whole thing more confusing, with each of these senses a child with SPD can be either hyposenitive or hypersensitive.  So an example would be that in Nora’s case she is hypersensitive to noise (auditory) but hyposensitive to movement (vestibular).  She herself was a loud, on the go, never sit still child who did not like birthday parties because they were too loud.  I mean she literally could not sit at a dinner table for years without falling out of her chair at least 100 times (and no I am not exaggerating) but take her to a birthday party and she shut down became super quiet and clung to me or her dad.  This is a prime example as to why a diagnose of SPD is so tricky and often takes years.  Even then because it is a spectrum disorder a child can be high functioning SPD so it will be even harder to notice.

In Nora’s case she showed definite differences in 6 of the 7 areas.  Some being extreme like auditory and some being mild like taste.  Even at the time of her diagnoses Nora had developed good coping strategies.  When a child has good modulation, they can organize sensory input to create an appropriate response.  Even though Nora couldn’t always process some types of sensory input she had developed stratagies to help her.  From a very young age Nora would have a helmet on her head.  It usually started in the morning when she would be outside playing and then stayed on till bedtime.  The helmet gave her pressure (touch) which was something she was always seeking.  Even today Nora will often have a hat on her head when she is in a situation or environment that overwhelms her.  In terms of vestibular processing Nora was always a seeker.  She needs to have movement throughout her day.  This doesn’t mean that she can’t sit still in a classroom, it just means that she needs times throughout her day where she can move.  As a young child that would come in breaks and recess.  Now that she is older she is able to sit longer and often that movement comes at recess or after school.  Another area Nora struggles with is visual processing.  To many things at once visually will overwhelm her and she struggles to organize visual information so puzzles are not her thing.

Once we realized the areas Nora struggled with then the Occupational Therapist gave us the tools to help Nora.  We learned that Nora had difficulty taking in sensory information from her surroundings and making sense of it.  So completing tasks like getting dressed, listening to a teacher, even walking through a mall where much harder for her than her peers because her brain was having to filter the information around her (something her peers do automatically).  This left her expending energy stores quickly and avoiding situations (she would shut down) despite having devolved appropriate coping strategies (liking asking to leave a party rather than having a temper tantrum).  Some of the tools we used back then were:

-A sensory diet with OT (and it is not something you eat)                                                                -Establish eye contact before giving verbal instructions and keep things simple                     -Practice responses to overwhelming situations by doing role-playing during play                      -Allow small amounts of movement during seated tasks like school or dinner table                   -Sit disk, exercise ball, chew gum, fidget toy all became part of our world                               -Visual schedules (this was a must for about 5 years)!                                                                   -Goal and reward system  in getting her to complete activities independently                               -Quiet place to escape too (we literally had a “Harry Potter” cupboard for her in one house)                                                                                                                                                        -Weighted blanket (this has been a life saver) Weighted lap buddy for school

We still use many of these tools today but now they are led by Nora herself as she knows what she needs and when.  I am often amazed at her ability to self regulate and also to do hard things.  If she has a close friend who is having a birthday party she will go and just know that after she will need to have some down time or a bike ride.  It wasn’t always like this and there were years before diagnosis and after that we felt lost and unable to help her.  Times when we both went to bed in tears but I see her today and know that all that hard work (on both are parts) paid off!  She has a better understanding of how to make sense of her world and I learned that the world doesn’t always make sense the same way for everyone!!  🙂

J

Note:  It is important for readers to understand that we all get a little overwhelmed from time to time in this world but for someone with SPD it impacts their lives daily.  Before we learned how to support Nora her day to day world looked very different.  🙂

 

 

 

 

Upside Down Soccer

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My husband was a search and rescue pilot in the military for many years.  It meant crazy hours, middle of the night call outs, and the inability to commit to coaching any of our kids sports teams.  So in the fall of 2008 when Nora was 5 years old I decided I would coach her soccer team.  Up until that point she had been your typical third child being dragged around to her big sisters activities.  Nora had little interest in joining things and when I look back now I see it was because it overwhelmed her senses.

However, my momma guilt was in overdrive and I thought what better way to get her involved in something but to sign her up for soccer.  I knew she would never do it unless I was on the field with her so I volunteered to coach.  I mean how hard can it be to coach a group of 5 year olds.  I loved kids and I loved being outside…..nevermind the fact that I had not played soccer since high school.  So I prepared cut up oranges and made up lots of fun kicking activites and set out to coach.  I am not going to lie, I was good!  The kids loved me because I ran around and played with them.  We spent 6 weeks laughing, learning to pass the ball to our friends, running, and eating a lot of oranges.  The only problem was my kid didn’t set foot on the field once.  Well that is not true, she walked out once to tell me she needed to pee!

Every week for 6 weeks we would go to the field and every week for 6 weeks Nora would sit in the chair upside down and watch us.  Her little friends would go over and ask her if she wanted to play.  Her sisters tried to encourage her to go out on the field.  Her daddy would come and help out in hopes she would want to play.  She never left the chair from the moment we set it up until it was time to put it away.  She wasn’t unhappy or scared.  She wasn’t shy and would often cheer us all on.  She just didn’t want to play!

I look back now and see why.  It was so fast and loud and there were other fields filled with other people running fast and being loud.  It was overwhelming for her and in order to cope she would sit upside down in the soft comfy chair that almost cocooned her.  It made her feel safe and secure in a situation that made her senses go crazy.  I am thankful that she had the chair and that she knew instinctively how to self regulate herself.

Nora still does not enjoy team sports of any kind.  She can now articulate why she doesn’t like them and it is the noise and speed at which they are played.  The upside down chair picture comes out once and awhile.  We all have a laugh at Nora’s very short soccer season….

J Continue reading