Archives for posts with tag: Autism

Before we begin…
Conversations with M:

M: Mommy, can I wear my new sunglasses that Uncle Kevin gave me?
Me: Sure, but please be careful with them.
M: *Walks over to mirror, puts on sunglasses and strikes a pose.  Then he leans forward and whispers to the mirror* There’s a NEW man in town! *walks away*

In my last blog, I talked about how this year started off bumpy for M.  He was having a hard time with Grade 3 and dealing with a lot of anxiety, sensory issues and frustration.

After discussing the situation with his Teacher and his SERT, we began working on solutions.  We realised that we definitely needed to set up a meeting to address things like the EA situation, but we needed to try to do what we could to reduce the stress, anxiety and frustration now. Right away we took steps to try to improve the situation. Knowing that the point system in the class was a huge source of frustration his Teacher suggested it might help if we started to use it at home and I was happy to do so.  We hoped that him having it at home as well as school, might reduce some of the stress and anxiety related to it.  As well, I had a discussion about it with him.  I told him that instead of getting upset when the Teacher got a point, that he should try to think of ways that he could help the class gain a point.

Next I talked to his SERT, again breaking into tears. (I unfortunately am a very emotional person and can’t help it.  I think I apologized about 20 times to both his Teacher and SERT that I was bawling and both of them assured me that they understood completely)  First she said she would hunt down some form of technology for him to use to reduce the amount of writing he would need to do.  This would help until the scrip from the OT went through.  She also found some small sensory things for him to use.  I have found that smells are very calming for M and have in the past used scented, flavoured lip balms to help him calm down when he was upset.  He loves good smells and a bad smell can be really difficult for him to deal with.  She had a wonderful EA in the school who made coloured, scented rice as a sensory item for the kids, so his SERT got him some of those.  She also was going to work on his visual calendar and set up a frustration scale for him.  He would be able to tell them where he was at any time from a 1 to a 5.  At a 1 he was completely calm and happy, at a 5, he was ready to melt down.  This gave him a way of being able to express himself.

I had a lot of talks with him and explained that I wanted him to try to tell me about things that had happened during his day. I told him that unless it was something truly major, I was not going to get mad at him.  The school was already handling whatever took place and I just wanted to discuss it with him.  This was something the school and I had discussed before that if the situation was handled there, there was no need to get upset over it.  Instead we would try to see how he could have handled it instead.  For example, one afternoon he was telling me how he had become very upset in the morning.  When I asked him what happened, he explained that he was in a group of kids and it had become too crowded for him.  So as a result he stood up and ran out of the class.  He also screamed. We talked about how he could have gone to the Teacher and told her how he was feeling and see if she could find a solution for him. (We are trying to get him to realise that he has to let us know what he’s feeling, something he really struggles with)  He explained that he couldn’t tell her because he didn’t know the word for what he was feeling.  I told him that he could tell her just that.  “I’m feeling something and I don’t know the right word.”  Another issue his SERT and Teacher were able to help with was the stress of the hallway in the morning.  It was so busy, loud and just generally overwhelming for him.  They decided that they would have someone bring him in right away when he got off the bus and bring him upstairs to undress and get into class before anyone else came.  This also gave him extra time to calm down and settle in for the day.

All of these things were a huge help to him and things improved, but they were still far from ideal.  We were going to have to have a meeting.  The EA situation was still all over the place.  Right now he was working with one of his favourite EA’s in the world.  But she was there for a limited time and when she left, it was going to be really hard on him knowing she would not be back.  He still would have many different EA’s in a day and while they are all wonderful, not all of them were the right fit for him.  I knew that the school wanted what was best for him, but they too were limited in their resources.  I knew there were many kids in that school with special needs and they all needed support.  But I also knew that this is my child and it is HIS needs that I needed to ensure were being met.  I walked into that meeting with my heart in my stomach.  I was so scared that I might have to fight to get him what he needed.

His Teacher, SERT and Principal all came to the meeting.  I had many time interacted with his principal and I have always had a great deal of respect for him.  He truly tries to know and understand all of his kids and I am amazed at how a man with such a large number of students manages to connect with so many of them.

Right away they told me some of the changes they had just made to his situation.  First, his SERT has searched out and found a laptop for him to work on while we waited for his scrip to go through from the OT (Occupational Therapist).  Together we added a lot of things to his scrip for sensory equipment such as a pressure vest (this makes him feel like he’s getting a hug all the time something that M really needs when he’s stressed), a beanbag chair for when they are sitting on the floor as that is really hard for him, a peapod (this is like a beanbag chair but without the pellets so it is filled with air and just surrounds and gives them a squeeze) a sit fit cushion for his chair, a fidget box and more.  While we are waiting for that to come through however they had found some sensory equipment for him to help in the meantime.  They had worked on his visual schedule, this allows him not only to know what is coming up at all times, but to have some control over some things like when he gets a break he can choose what he places in that slot.  They added breaks for him, something the OT has approved and they have been able to add to his IEP (Individual Education Plan).  Some of the breaks are sensory breaks while others are movement breaks.  They insure that M gets his work done but they have realised that these breaks are so important for him and let him come down after working hard.  When he has one of these breaks, he chooses what he would like to do.  His choices depend on if it is a sensory or a movement break.  This helps to give him a degree of control and reward.  His SERT has set up an area in her office which is right next to his classroom that will have some of his sensory equipment, such as the peapod.  This way he doesn’t have to go all the way downstairs to the sensory room.  He often will go to visit her when he needs a break or when he’s upset.  She is fantastic with him and he has a wonderful relationship with her.  Next, they asked that from then on I make sure to put his snack in a separate bag so he can bring just that in for snack time. They told me he was often eating his entire lunch on first break and then had nothing for second. Next, they asked me how I felt about them creating an office for him.  They said he would have his own little area that they would call his office and this would be where he would work.  It would remove a lot of the distractions and sensory obstacles in class when he was working and help him to focus.  I thought it was an amazing idea.  And perhaps most importantly they altered his EA schedule so he has just one EA at all times.  They chose someone who works really well with him and who he likes very much. I was overwhelmed with how they had basically addressed everything I was concerned about and fixed it.

So, how has it all turned out?  Shortly after that, I got his first progress report.  I couldn’t believe my eyes.  All of his subjects were marked “Progressing Well”.  But it was the other part of the report card that brought tears to my eyes.  On this area, the marks are NI (Needs Improvement), S (Satisfactory), G (Good) and E (Excellent).  For Organisation, Independent Work, Initiative and Self-Regulation he got a G.  I was over the moon.  But then, for Responsibility and Collaboration, he got an E.

About a week later, we had a parent Teacher meeting.  Both his Teacher and his SERT attended the meeting. At M’s school the interviews are student lead.  I absolutely love this.  Gone are the days of a child sitting at home or right outside the room, filled with anxiety, not knowing what is being said.  The children are able to choose the things they feel they did well, areas they have improved, areas they feel they need to work harder on and things they are really proud of.   I can’t tell you how incredibly proud I was of him and how overwhelmed and amazed I was over all they had done for him.  M had a script that he read from for the interview.  He had and his SERT had sat down the day before and rehearsed the script so he would feel prepared and confident when presenting his work.  He read from the script introducing us even though we had met many times already, however after the introductions he insisted “This is where you are supposed to shake hands!” Which made all of us laugh and of course his Teacher and I shook hands, after all that was “what you are supposed to do”.

As I sat there looking at all of this stuff I was holding back tears.  The visual schedule his SERT had created must have taken a huge amount of time and effort to create.  She had everything laminated with pictures and it all went onto the schedule with Velcro.  Each day it would be set up for him so he knew what was coming and when it came to his breaks and choices he would pick out a different sheet with more pictures on velcro and place his choice in the slot.  He pulled out his work to show me all the things he was doing and what he felt proud of as well as what he realised he needed to work harder on.  After each, he would come to a part in the schedule where he would say “Do you have any questions or comments?”  Sometimes I would ask him about it always commenting on how wonderful it all was.  At one point when he asked me for any questions or comments, I sat there smiling so wide and all that came out was “I am just so proud of you.”  His teacher smiled at me and said, “And that is the best comment of all.”

His office was wonderful and they had even put a picture of him in his Halloween costume up on the wall to help make it special.  His schedule was there and he had bins next to him with his choices and some sensory equipment.  Do we still have challenges and difficult days?  Yes, of course we do, but they are much fewer and farther between. As we finished up the meeting I looked at the smile on his face I could see that the best thing that had come out of this was the change in how he felt. For M, grade 3 had gone from a “can’t” to being a “CAN and WILL”.

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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