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

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