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Unfortunately, this blog will be in two parts as it is very long.

On a happy note, I will be trying to start each week with one of my “Conversations with M.”  They will likely always be off topic, but they will help you to get to know him better and help you to see just how awesome he is.  So without further ado:

Me: What’s wrong buddy?
M: *FRUSTRATED* The computer is not working (This is my old laptop he is working on that is losing the will to live)
Me: Okay, Let’s try restarting it.
M:*Restarts* Oooooohhhhh, *facepalm* look, it’s updating.
Me: *Smiling* Okay, good, that’s probably why it was running slow.
M: *Completely serious* Yeah, I think it just needed a little fart.
Me: *DYING*

In our house, the beginning of a new year of school is always filled with anxiety. Who will be the teacher? What is the teacher like?  Who are the other kids in the class? What is the classroom like?  Who will be the EA (Educational Assistant)?….   And that’s just ME!

All kidding aside, I never, ever let M know that I’m stressed and to be honest, I’m not nearly as stressed as I would be if it were not for the fact that M goes to a truly exceptional and amazing school.  I cannot tell you how LUCKY we are that he goes where he does. I have heard so many horror stories from parents who have to fight their child’s school just to get them what they need, and even then, they often do not get it.  It breaks my heart for their child and for them.  So, I am chronically aware of how fortunate we are.

Today, I am sharing M’s experience for two reasons. One, I find that in sharing our experiences, we help each other to feel less alone and it helps to know that someone understands just some of the things we go through. That will be what I will be trying to focus on in this first part. The second reason I am sharing this is in the hopes that some of the things that we have found work for him and help him to be successful, might help other people or spark ideas that would work for their children.  This is the part I will try to focus on in part two.

For the most part, M loves school.  He wants to go most days and he really has an enjoyable school life.  That being said, school can be very stressful at times and most days he has at least one incident where he gets very frustrated.  That frustration can come from one or many things, there are numerous triggers and if he cannot find a way to communicate his needs or help himself to calm down, it will result in some kind of behaviour or meltdown.  I will expand in a bit on what those behaviours and meltdowns are like.

Anxiety is a big part of M’s world, as well as Sensory issues (A LOT of Sensory Issues), Communication difficulties, Language difficulties and difficulties with Transitions, Fine and Gross motor difficulties and more.  School can be a source of anxiety for any child and their parents, but for kids and parents of kids on the spectrum, or any child with special needs, it’s a whole new ball of wax. The beginning of a school year is a huge transition and for children on the spectrum, transitions are filled with anxiety and stress.

You would think heading into grade three would be no different than other years, stressful, but at this stage in the game, something we were getting used to. But it was.  Grade three has been said to be the big year in school.  It is an important year and a demanding one.  Did I think M had the ability to do this, HECK YEAH!!!  He can do anything he puts his mind to.  I had no doubts that he could and would do amazing. I did however think the journey might be challenging and would probably have quite a few bumps in the road, but there was and is nothing that we could not find a way to get past.  I always let M know that no matter what we face, we will face it together and we will find a way to get through it.  He had done so well in grade two.  There were challenges and there were rough patches, but he got through them and by the end of the year, he was doing amazing.  I was so proud of him and he was proud of himself.

And so, when we hit a bump before grade three even began, I was stunned. As a matter of fact, this bump was right at the end of grade two.  M had heard his friends in grade three and six talking about the large government test that they take towards the end of the year. This test is a way for the government , the school board and the school itself know how the schools and teachers are performing.  And even though it really doesn’t affect the children in any way, they still stress about it.  They worry about how they will perform and how they will measure up to their friends.  And so, between the test and the fact that he had figured out that each year was getting progressively harder with a bigger work load, M’s anxiety was through the roof.  He told me that he wasn’t going to be able to do grade three, it was too hard.  I have always told him, there is no “can’t”, he CAN; we will find a way and we will make it happen.  But, even with my constant reassurances, for M, grade three had turned into a great big “CAN’T!!”

To add fuel to the fire, at the end of grade two, some of the people M had a strong connection to, were leaving and would not be back next year.  He lost his vice principal, someone he really liked a whole lot. The other two people he lost were people who he truly loved and adored.  One was his grade one teacher and the other was one of this favourite EAs.  They were both still very involved in his school life and he had a truly beautiful connection with both of these people.  He knew that when he came back, they would not be there.

To help him through the transition of going from grade two to grade three, one of his wonderful EAs from that year had made a social story just for M.  It was all about what to expect in grade three.What they would be learning about, the changes that would take place, the new vice principal, all while reassuring him about how great he was going to do.  It was fantastic.  She had pictures of him and others and it was completely personalised just for him.  It really did seem to help ease his anxiety a little.

Over the summer I did things to try to show him that he was going to do just fine in grade three.  We did some graphs and worked on a grade three work book that is created by teachers and is straight from the grade three curriculum in this area.  I knew that in order to get him interested and get him to want to do this, I had to make it fun.  I had to make it about what he loves and what is important to him.  So, I made it about cars and superheroes, two things he really loves.

A couple of times, we went around the neighbourhood, armed with a pencil and a pad of paper, collecting information about cars. We would create zones and he would choose what brands of cars we were looking for. Then we would mark off how many of that type of car we had found in that zone.  Another time, we sat out front of our home in a couple of camping chairs.  We brought a timer with us and our music as well as our trusty pad of paper and pencil.  I had M choose several different brands of cars again and for those that were not in those brands, we had an other category.  We would then set the timer for ten minutes and start our music as well.  For that time we would record how many different types of car drove by in that time.  Of course, we sang and chair danced at the same time. (That’s the only kind of dancing I do these days, especially when I’m extra sore)  Then after ten minutes we would reset the timer and do it again until we had done it four times.  Then we created a line graph based on the information we had gathered. Other times we would gather information by votes.  I would have him choose the pictures he wanted of cars or super heroes and then I would create a collage of them with numbers for each one.  I would put it up on Facebook and then ask everyone to vote on it.  M would count the votes and then make a bar graph from the information we gathered.   He did great and it helped a little to ease his anxiety and allowed him, for the most part to have a really fun summer. However, the last couple of weeks were hard.  The closer we got to the end of the summer, the stronger M’s anxiety became.

 

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Some of the Graphs we did over the summer. I wrote the words, but he did the work. I think he did pretty awesome.

 

Every year at the end of the summer we come in a week before school starts to allow M to meet his new teacher and see his new classroom.  We have done this every year and it really seems to help with the transition as well as the first day of school.  The past two years his SERT (Special Education Resource Teacher) has emailed me and we were able to set a time and day that worked for everyone.

We went up to the school and M was very excited to see his school and see many of the staff.  The great majority of the staff in his school know him well and adore him.  His SERT came to the office to meet us and take us to his new class.  Right away, things were different than previous years.  Until now, M’s class had always been on the first floor.  This year, for the first time, he is on the second floor.  Now, he told me that he’d hoped to be on the second floor, but again, having only been up there for short periods of time on rare occasions, he had no idea what it was going to be like to be up there all the time.  It’s different from what he knows and is used to and beyond that, there are quite a few sensory differences with being on the second floor.  First of all, just having to climb up and down the stairs several times a day is new to him.  Then you consider that the acoustics are different, the smells are different, it’s more crowded and therefore more noisy, the heating feels and smells different to him, the lighting seems different to him, it’s just…. different.

We were then introduced to his new teacher.  She was not someone I had met before and M didn’t seem to know her very well, but I was so pleased at who they had chosen for him.  She is wonderful with him and was wonderful with him from the first moment we arrived.  We discussed a lot in that short time and one thing I talked to her about is hugs.  M is a very huggy kid and it’s actually something that calms him down. He loves the feeling of getting and giving tight hugs.  She assured me that that was fine with her and I breathed a huge sigh of relief.

She told us that she only works 4 days a week and so M would have a different teacher on Wednesdays.  She assured me that the Wednesday teacher was a lot of fun, very artsy (M LOVES art of course) and very kind.  All of that is true, however, again, this meant not just one new teacher, but TWO new teachers.

M and I told her about how nervous he was about grade three and about some of the work he had been doing over the summer.  She then showed him that one of the very first things they were going to be doing was gathering information and making graphs.  This got a HUGE smile from him.

Also, his classroom is one with an accordion door in the middle.  This door opens to the class beside it and as they said, it meant that the teacher on the other side and the other class would be involved with him too.  Thankfully, this teacher in the other class was one he knew well as she was a kindergarten teacher when he was in kindergarten.  He didn’t have her, but he knows her well.  She is amazing with Autistic kids and truly understands Autism.  He’s been in classes with an accordion door before and where the classes will blend together at times, so thankfully this was not something new to him.

Before we left he gave his new teacher and his SERT a big hug and promised the teacher that he would wear the fedora he was wearing that day on his first day so she would be able to find him right away.  He promised.   I asked him what he thought and he said “I like it, it has Lego.”  Which of course made my father and I laugh and me relax a little.  As always the visit answered a lot of questions for us and really helped to make the transition a little less stressful, but there were still a lot of unanswered questions.  At that point we had no idea who he may have as an EA or how many EAs he would have.  Also, we had no idea who was going to be in his class and were hoping that he would have at least a few of his close friends with him.

A week later when M started, it all seemed to be going quite well.  I would ask him how school was and he would say great.  As always, I couldn’t get much out of him about what he did or what happened, but he kept assuring me that he was doing really well.

Then I started to notice things at home.  He was stressed, he was cranky which was very unlike him and the one that really worried me was he was hitting himself.  It wasn’t really hard or anything, he would pound on his legs with his fists or smack himself in the head, but it was enough to scare me. He would constantly use the statement “It’s all my fault”.  I would ask him how school was and he would say it was good.  But when I would ask for more information, he would get frustrated with me.  What was also worrying was that he often couldn’t tell me who his EAs were that day and would say that there had been many of them throughout his day and he didn’t know any of their names.  The constant switching was not good for him and I was getting really worried.

I emailed his teacher and she let me know that she had been wanting to talk to me as well.  She phoned me and the story I got from her about school was very different than M’s and quite heartbreaking.  M was melting down daily.  His stress and frustration levels were through the roof.  He was throwing things (not at anyone, just things like throwing his bag into his locker or throwing his water bottle down on the floor, still inappropriate and wrong, but not in a way that he was trying to hurt anyone), throwing himself on the floor, hitting himself, running out of the classroom and trying to take off (this one always scares me a lot, if he is really upset he tries to run from the situation, not uncommon, but still scary) , screaming a lot, yelling “it’s all my fault” even when the situation had NOTHING to do with him.  Some of his behaviours were ones he hadn’t exhibited in a very long time, some not since kindergarten.  It was like he was regressing in some ways.

When I asked what was triggering all of this she told me that there were a lot of things.  For example, if one of his friends did something they shouldn’t, he was very upset that they were getting talked to about it. M hates to see anyone hurt or upset.  There was a point system they were using in the class where if they did something right, they got a point.  It could be listening well in class or even one of the students helping a friend or the teacher. However, if they did something they shouldn’t do, such as being noisy in the hallway, the teacher would get a point.  If at the end of the day they had more points than her, they got five extra minutes towards their free time on Friday.  This meant they could get a total of 20 extra minutes from Monday to Thursday.  But, whenever she got a point, M would get extremely upset.   Other things were things he had always had difficulty with such as turn taking.  He was frustrated with some of the work, especially anything where he had to write.  With his fine motor issues, writing was very difficult, frustrating and exhausting.  The reality was that there were bigger issues, but as is the way, it was coming out on the smaller things.   It was a mess.  I am a very emotional person and when I heard all of this I couldn’t help crying.

We needed to find the triggers that were causing his frustrations and do something to fix the ones we could and help him find ways to communicate or somehow get through the ones he couldn’t.  We decided that we would set up a meeting with his SERT and his principal at the school to discuss it all, especially the really big issues like the EA situation, and in the meantime we would come up with ways to see if we could help reduce his frustration levels.

In my next entry I will tell you all the things we have done since then to help M and what does and does not work for him.  Thank you for reading.

Lyndsay

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So yesterday I had gone to see our absolutely amazing and wonderful social worker, when she turned to me and said, “Lyndsay, you should blog!”

I clearly looked completely surprised because she said, “I think you could inspire people.”  What a beautiful thing to say. What and incredible comment.  And what a huge prospect!  ME???  Inspire people???

Anyhow, I think our beautiful social worker may greatly overestimate my abilities.  But, I am willing to give this whole blogging thing a try.  Please, be patient with me.  My grammar and spelling are atrocious and this is very new to me.

I’ll start with the less exciting topic: me.  I am a single mother and I have Fibromyalgia, a chronic pain disorder that can also cause chronic fatigue.  As a result, I have not had a pain-free moment in 14 years.  When I say that, it’s not an over exaggeration, it’s a fact.  I live in constant pain.  Some days are better than others, but they are all painful.  I am also hyper-mobile which causes my joints to sublex.  My ankles, knees, hips and shoulders are the worst culprits but my wrists, fingers, toes and some other areas have been known to act up too.  This all being said, I try to keep a good attitude and live a happy life around this.  I try to see things differently.  For example.  For most people, it would take about 15-20 minutes to walk to the store near my house, grab some things pay for them and bring them back home (It’s not far at all). For me on the other hand, it takes a LOT longer.  At minimum it takes just over an hour, but usually it’s an hour and a half to two hours.  So… Instead, I try to go when I can bring my favourite little man with me and we make it into a fun thing.

Now, here is where we get to the exciting part, my darling 8 year old son; who from this point forward I will refer to as “M”.  Going on these walks with him, just makes it all that much more tolerable.  The pain and the fact that it takes me so much longer gives me an opportunity to spend time with him.  We laugh, we play and we just enjoy being together and it makes it all so much more easy to take. We talk a bit when we start out but almost right away M will say, “Let’s play Mommy!”  Usually the game is car themed (Cars, Cars 2, Hot Wheels, Racing games, Transformers etc…).  Sometimes we will pretend that the mall is the enemies’ hide out and they have some of our allies being held captive.  We need to find a way to infiltrate, free our allies and collect the valuable information that is needed to stop their plot of world domination.  We play this both on the way there and on the way back.  For a long time it will be the same game, over and over again, but that’s fine.  Other times we talk and act silly and he will run for me while I sing “Flash” by Queen. (Yes, I know that is “Flash Gordon” and not “The Flash” but it’s an awesome song and he likes it.) The walk is physically painful and so tiring, the whole thing will take a lot out of me, but I LOVE it.  We often go for our walks together.  During that time there is no distractions.  No computer, no t.v., no video games, no other people and unless it is an absolute emergency, no phone.  (I’m one of those people who only uses my cell phone if I have to and even then I hate it.  The only thing I really like about having a cell, other than for emergencies or situations where I may be out and someone needs to get a hold of me for something to do with M, is for the camera.  I love to take pictures and videos of him).  We get a lot of funny looks, but I never mind.  So long as M is giggling away, I could care less what anyone else thinks.

I need a lot of rest because of my health.  I am unable to work and when I put my son to bed, I lie down as well which means that I don’t have a social life.  But we cuddle up each night and he reads to me and then we spend some time just unwinding while I read and he either reads or plays on his playbook before lights out.

Now for the more exciting topic, M.  This child is my world.  He is smart, funny, sweet, kind, he has the most infectious laugh in the world and the biggest heart.  He is the go to guy for hugs and if you’re in need of some cheering up.  He is so incredible and I wouldn’t change a thing about him.  He is on the Autism spectrum and this is a part of who he is.  He is very high functioning.  He is in a mainstreamed class and while Autism creates challenges for him when it comes to some things like anxiety, sensory issues, social cues, norms and situations and communication and language difficulties, it also is just part of the over all awesome person he is.  Overall academically, he does great.  He loves math and is good at it, he’s a great reader.  He is an Artist and I truly mean that.  His art is so beautiful, it really amazes me.

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This is one of M’s amazing works of art. He did this entirely using Plasticine on canvas. He would take tiny amounts and blend the colours. It is based on a Tom Hiddleson and was done during one of his art classes he takes after school. His teacher is amazing and teachers them so many different mediums.

He is a car fanatic.  He knows so much about cars and as a result now I do too, although he still knows more than me.  His knowledge of cars amazes me and he can recognise so many cars, I don’t know how he does it.  He not only knows the cars but he has an understanding of the science behind them as well as the history.  He is Hot Wheels mad.  He has so many Hot Wheels I couldn’t begin to think of a number, well over 200 I would say (that’s probably a really low estimate) and yet he knows every one he has and when he earns a new one, (this is our form of currency and rewards) he will not only know right away if he has it but he will know what colour/paint job he has it in.  I have handed him a car and had him say “WAIT!” run upstairs, grab one of his Hot Wheels readers and say “Look, here it is on page 5 but that one is black and this one is green and sure enough, there is the same car you just handed him in a different colour drawn on the page.  He has done this many times.  He has slept with his hot wheels many

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Drying just a few of his cars after a weekend “Car Wash”

times and has even had me make a bed for them in his bed where I have had to use a face cloth to create a pillow and a blanket to make a bed.  He loves music. ( Billy Joel, The Beatles, Peter Gabriel, Queen, Michael Buble, Ed Sheeran etc….) He is my world and I cherish every moment with him. I feel (and I hope every single parent who is reading this feels the same way) like the luckiest person in the entire world to be his mother.

Well, this is a lot longer than I had expected, but now that you have gotten to know us, I hope you will stick around and get to know us even better.  Thank you for reading.

L