Today is the final day of Autism Awareness Month! So, as is my custom, I created a video of Caleb to celebrate all that he is!

     Just for "fun", I'm also posting the last few years of videos! 

    
​     Thanks for coming along with me this month! 

xoxo

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    To say that my son Caleb, who has autism, merely “likes” things is a gross understatement! We’ve spent the last 12 ½ years navigating extreme obsessions, and working through how to teach our son moderation, and understanding the value of money when it comes to wanting everything that was ever made for a particular thing! For the last year or so he’s had tunnel vision for Cars 1. Not the movie, actually, but for the toy cars from the movie. More specifically, every freakin’ toy car ever made from the Cars 1 movie!!! There’s a race scene with a bunch of obscure cars, and Caleb has watched the clip of this race on YouTube over and over, and has watched toy demos over and over, and has read lists over and over about which cars are in the race scene, and what their names are, who their sponsors are, what colours they are, and “we will find them at Toys R Us Mom!” he says every time we drove by a Toys R Us! Truthfully, for a time we would stop into Toys R Us, Wal-Mart, and even Shoppers Drug Mart to check if their Cars 1 toys selection had changed. We had to do it without Caleb though because if he saw one he’d been pining for, he wouldn’t stop talking about it. There was no buying it secretly and giving it to him later! If he knew we had in our possession a Cars 1 racer, well, you could put what scrapes of sanity you had left into the trash, because you were going to be HARASSED about it endlessly!!! End…less…ly……
 
    He has moved on slightly from the all consuming Cars 1 racers, so the endless ramblings about the cars have ceased (for now!), and the obsessive asking for whatever new car he’s discovered from the illusive race scene has stopped, but they are still very much a part of his life. He still brings his ENTIRE COLLECTION of cars with him in a bag everywhere we go. Ya know, just in case?
 
    FYI, Caleb’s current obsessions are (in no particular order): The Italian Job video game, Forza Horizon video game, Veggie Tales (this has been a recurring obsession for 10 years!), and with this particular obsession comes none-stop quoting of lines, and demanding that the rest of us quote them for him! We are here for his amusement, of course. J Moving on, he’s also obsessed with toilets. Yes, I did say toilets. If he’s had a good day at school, part of his reward is 5 minutes “toilet time” on the computer. What does this mean, exactly? Well, for some reason completely unknown to me, there are hundreds and hundreds of videos that people have taken of different toilets in different locations. I don’t know, I don’t understand it either! But Caleb loves watching these different toilets, the different noises they make, the different styles they could be, and some of them make him laugh out loud. Not sure why. For a while this obsession became a problem because everywhere we went he NEEDED to use the bathroom to “check out” their toilet situation. It also became a problem because at school, for instance, he would say he needed to use the bathroom 20 times a day, and so he’d be allowed to go, just in case he really actually had to go. Which usually, he didn’t. We had to place restrictions on his toilet use at church too because we’d leave him at Sunday School, and as soon as we left he’d tell his helper he needed to use the bathroom, then he’d enter, and never come out! Not until we came back to get him, and then he’d come out sheepishly, apologizing insincerely. He’s getting way better at public washrooms (and I want to remind the world that at one point in Caleb’s life he was TERRIFIED of public washrooms, and would rather use his pants then enter the public bathroom! So, trust me when I say you never know which direction your special needs child may go when it comes to “troubling issues”!), and has stopped asking repeatedly to use the bathroom when we go somewhere.

   We see how Caleb’s obsessions work for good and bad. For example, he is able to connect in some ways with kids who like the things he’s currently interested in, but unfortunately, more often than not it alienates him because someone will say “Hi Caleb, how are you today?”, and he will respond (in a very fast, not so clear kind of way), “there will be an Austin Mini Cooper in The Italian Job video game, and there will be a Honda Civic in the Forza Horizon video game at Isaac Beatty’s house!!”. The response from whoever asked the question is usually, “um……what?”. Yeah, that’s a common “conversation” in Caleb’s life.
 
   So, how do we balance his obsessions with real life? Well, a lot of trial and error still, but what we find most effective is using his obsessions as a reward only, and not as a “well, he’s crazy about this, I guess he can do it all day!” sort of mind-set. It can be easy to do that, to be honest, but it is not beneficial to Caleb in the long run. He needs to learn in his autistic, sometimes close minded, tunnel vision life, that having interests is healthy and normal, but shouldn’t rule everything you do.
 
   This may sound judgemental, and it’s not meant to be at all…but when I meet or hear of special needs kids who spend all their time doing (insert obsession) because it “makes them happy”, I can’t help but feel badly for that child. I mean, unless their obsession is something super constructive like fund-raising or maybe cleaning, I can’t see how letting them do whatever they want to do all day, everyday, is a healthy and productive way to grow up. Us parents have a tough job raising kids, and raising special needs kids just ups the ante on how driven and focused we need to be with where we want them to go.
 
   I recently heard someone say that if you don’t know where you’re going, then you won’t know if you’re on the right road, and you won’t know when you get there. That struck a chord with me because, well, it’s so freakin’ true, but it really felt so applicable to raising Caleb and being extra aware of what we doing to put him onto a path that is leading him into adulthood.
 
   So, if we let him obsessively watch toilets on YouTube, and flush every toilet we ever saw, he would become someone that couldn’t possibly attend school, hold a job, be a good son, friend, or have deep meaningful relationships at all.
 
  So, back to my point – obsessions as rewards. Caleb gets to keep his Cars toys with him, obviously, but to use them as a reward, if he’s been unkind to his sisters, we take away 2 of his Cars characters, and he doesn’t get them back for a week. He likes the “collection” to always be together, so taking two out is hard for him. Sometimes he’s got 6-8 gone at one time because he’s been particularly “edgy” with his sisters, but we have found that in the last few months this method of character training has been beneficial to him, and the incidences of upset between him and his sisters is decreasing.
 
    Also, If Caleb has had a good day at school, he gets to have “free computer time”, with the first 5 minutes being “toilet time”. If his day was pretty good, but with perhaps a few hiccups, then he still gets computer time, but no toilets. If we’re out and about, and Caleb hasn’t asked endlessly to see the toilets in whatever locations we’re at, we let him check them out. We’ll say something like, “thanks for not asking repeatedly to go to the bathroom and see the toilets, how about we pop into this bathroom to see their toilets for doing such a good job?”. That always makes his day!

​     Using the things he’s constantly drawn to and thinking about as training tools is (in my opinion) a very effective way to bring up a child, special needs or otherwise.
 
     That’s how grown-ups live though, right? Hahaha, well, maybe kind of. I’m sure the toilet scenario doesn’t apply to many people! But, if you love something, usually it’s only something that you get to do occasionally, or it’s something you plan do to like going out for a nice dinner, visiting friends, etc. Most neuro-typical (non-autistic) adults know that just because you like your friends doesn’t mean you should quit your job and spend all day following your friends around. Or if you like going out for meals you should just go out for every meal, every day. We learn the skill of applying moderation to those things we enjoy. So, if I allow my son to simply indulge endlessly in his obsessions because it’s “just autism”, and “it makes him happy”, I may as well pick him up and set him on the road that leads nowhere.
 
   I want (I dream, I hope, I pray) for Caleb to become a young man who can develop deep and meaningful relationships, for him to have a girlfriend and be the best boyfriend ever, for hime to be a caring and loving son and brother,  for him to hold a job, and be a tremendously contributing member of society. All those things won’t come to him if he’s allowed to shut himself up into his own world of toilets, Cars 1, Veggie Tales, the Italian Job video game, and whatever else he suddenly catches sight of that turns him into a tunnel vision monster!
 
   I secretly hope he will become a plumber though. Let’s talk about using obsessions to fuel careers, shall we!?! Ok, I’ll save that for another time (or, you can read a post I wrote a long time ago about it). But honestly, if this toilet thing persists, becoming a plumber would be a very important, reliable, and fulfilling job for Caleb. I mean, he actually, honest-to-goodness LOVES toilets! J And we’re always gonna need shitters! Excuse my French.
 
  It is always my hope that somewhere in my ramblings, there is something helpful you can draw from it. Raising a child with special needs is, well, special! That means taking special care to look to their future, and see where you hope they will go. From there, you take the tools you have (even those sometimes pesky obsessions!), and create a life that builds on your child’s strengths, challenges their weaknesses, and creates a life that will be fulfilling for your child.
 
 
xoxo

     In the post, Autism & The Curious Incident of the Dog in the Night Time, I started to talk about the independence young people seek, and that is no different for people on the autism spectrum.  
 
    Our son Caleb with autism is now 12, and he is wanting to be independent, but still needs so much support. We want to offer him more freedoms, but find this very difficult at times because his safety is a concern, as well as the fact that with independence comes heartache, failure, and struggles, and as parents we want to protect our kids from that.
 
    We are not the kind of parents to coddle, but we have realized that we are the kind of parents to micro-manage, for the sake of making life a little more stream-lined. For instance, if I’m baking, I really prefer to do it on my own. I like the order and tidiness in which I bake and prepare foods, and I like to have my own space, and work in my own time. I also prefer to do things myself like wash the dishes or sweep, because I can do it faster and better than the kids. I know you’re reading this and thinking, “duh? Of course you can do dishes and sweep better than a child!”, but the fact of the matter is, if I want my children to grow up and know how to do these things…...it’s gotta start with me teaching them!
 

   A big part of being successful independently, is having the confidence that you are capable of completing whatever job/task you’re doing. This is true for my neuro-typical kids, but especially for my son with autism. If I expect him to grow into adulthood with the basic skills to take care of himself, I’ve got to let him do some things on his own!
 
   Allowing independence to a child with special needs will look extremely different for each individual dealing with it because of the many aspects of autism there are to consider. For us, allowing liberties has looked simple to the outside eye, but for us, and for Caleb, these have been big stepping stones.

    In the past few years we've made an effort to create some independence by providing simple choices for him to make. For instance, we've allowed him the chance to choose his own clothes every day (we made this easier by cutting down on the amount of clothes he has to choose from, and also keeping the clothes he has fashionable and well fitting. We've also starting buy 2 types of gluten-free cereal so that on cereal breakfast day, he can choose which cereal he wants. We’ve also started letting him grab his own bowl, and the milk from the fridge. We also have started letting him pour his own cereal and milk. With the responsibility of getting your own bowl, cereal and milk, comes the natural jobs of putting all those things where they belong when you’re finished!
 
    These freedoms don’t sound like much, I know. But they’ve come slowly, and naturally based on what we thought he was ready to do. I used to take the extra time to get everyone’s bowls out, pour the cereal, and once the kids got dressed and got downstairs, I would pour the milk for them. I didn’t mind this “extra work” because I was used to it, and I was already in the kitchen getting lunches into backpacks and starting up the day.
 
    Honestly, I’m so stubborn about some things, and insisting on just doing it myself to make life “easier”, that I was stunting the self-ruling growth of my children. For me, something that has really helped is my 2 daughters. One is 8 years old (Abigail), and one is 7 years old (Keziah). Abigail naturally takes steps into maturity because of the fact that she doesn’t have autism, and can verbalize needs, wants, and desires more easily than Caleb.
 
    She’s really the one who started making my husband and I look at what freedoms we’d given Caleb, and the truth was, we’d hardly given him any!
 
    Abigail started asking if she could “help me” get breakfast ready by getting out the bowls & spoons, cereal & milk. Or by taking out the bread and toaster, or grabbing the peanut butter and honey, yogurt, etc. She was eager to help because she inherently knew what she was capable of, and was eager to test out her new skills. It got me thinking about Caleb and how we’d kept him from doing these sorts of things because, well, it was always just “easier” for us to do it. This feeling was perpetuated initially because given the chance, Caleb would dump cereal everywhere, or pour so much milk it overflowed onto him and he’d have to get re-dressed for the day. He’d glop peanut butter onto the floor, and somehow manage to get honey into one of his sisters’ hair. It was frustrating, but important steps were being made toward him being successful at breakfast. FYI, he still pours too much milk, but not to overflowing. As they say, there’s no use crying over spilled milk (or peanut butter on the floor, or honey in hair!)! The only thing to do was to clean up, and try again.
 
   Since Caleb “mastered” cereal, we’re now letting him try spreading peanut butter onto a banana, and have recently taught him how to cut an apple. This is something he often insisted on, but stopping to cut an apple (which is a fruit of choice in our house because it doesn’t need any special prep done to it!) wasn’t ever in my plans for the day. So, we finally taught him how to do it himself! We showed him several times how to hold the knife so that he didn’t accidentally cut his fingers off, and eventually, he got it. It bothers me that he sometimes leaves the hard “shell” that surrounds each seed from not cutting away the core properly, but I’m not eating the apple, so I had to learn to let it go (go ahead, sing the song from Disney’s Frozen…).
 
    If our goal with Caleb (or any of our kids!) is that he grow into an adult who is capable of taking care of (at least) his own daily needs, then it’s never to early to start working on it. I want to know that he can shower (we’re still working on this), get dressed, make himself something to eat, clean up after himself, and get out the door on his own. His independence is something that keeps coming back in conversation between my husband and I, and that keeps us reading, asking questions, and laying awake in bed at night hoping we’re setting Caleb up right.
 
 

​     Each day is different, so each day offers new chances to give or take away freedoms. We thought we’d give Caleb the job of filling our outdoor wood stove. He was given much instruction on it, and how it must be done safely and properly, and although he was always doing this job safely, he wasn’t ever doing it properly. The wood wouldn’t catch fire, and the temperature would slowly go down, leaving our house freezing cold, and my husband or I would end up outside trying to rebuild the fire after we realized it had gone completely out. So, we talked with Caleb and told him that he wasn’t ready for that job, and instead had him carry a few logs everyday over to the outdoor wood stove from the wood pile. He was capable of the manual labour involved, but not of the skill and understanding of fires to successfully fill the stove and have it catch. For the most part though, we try to build on each new strength and liberty he is finding. Part of doing this though is the give and take in jobs or tasks given. So, with the stove, we thought maybe he could do it, but after giving him a fair chance at doing it, it became clear he wasn’t ready for that job. But, instead of my husband or I just throwing our hands up in frustration and saying “forget it! I’ll just do this job!”, we re-thought the situation, and gave him a different job within the same job frame. We also gave him a new job altogether after the fire-building failure, and that is to feed the dog in the evening. So, we changed one job, and gave him another that he is very capable of.

    For a while last fall, Caleb kept going on about a push mower. I'm not at all sure why, to be honest, but our wonderful neighbour heard about this, so he gave Caleb a push mower! The neighbour had been given it as payment for a job, but he didn't need it, and hadn't used it in the years that he'd owned it. Caleb was over-the-moon excited! He'd get off the bus and immediately ask if he could cut the grass. The answer, of course, was yes! We were proud of him for really focusing, and he worked away in small patches everyday, and did a very good job! 
 
   We haven’t got this all figured out yet at all! I don’t think we ever will. Not giving up some of the jobs I was doing, and doing all the jobs myself was me hiding from the fact that Caleb needed to start doing more for himself in order to grow and gain confidence in who he was (and is) becoming as a young man. Sometimes letting him spread his wings is messy. Ok, it’s often messy, but it’s important.
 
   Whether you have a child with special needs or not, ask yourself “am I giving them enough of a chance to grow and mature?”. If you’re not sure where to start, ask your child! If they are special needs, and not verbal, a good place to start would be to check out the list below of age appropriate chores. Doing chores creates independence, and builds confidence. Remember (but don't lament) that your special needs child is likely not within their biological age range for chores. Caleb is in the 7-10 age range, even though he's almost 13. That's ok. Something is better than nothing when it comes to building independence. And you can't build if you don't start!

    There is a quote from a writer, Robert A. Heinlein, that says, “Do not handicap your children by making their lives easy”. This quote is so ironic here, as I am dealing with creating a life that is independent and fulfilling for my son who is “handicapped” (don’t get all upset over my use of the word! Handicap simply means that progress is slowed or difficult, or there is something acting as an impediment). Making his life “easy” though by doing everything for him will only act as a crutch as he gets older. He needs to learn, struggle, adapt and take on the challenges in his life so that he can live a confident life!  ​
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      My Mom told me a story about a young man with autism who relied heavily on his older sister to get him up in the morning, get his breakfast for him, pack his lunch, and get him on the bus for school. The father worked, and was up too early to be able to take on these tasks, so this sister became the one responsible for making sure her younger brother got off to school everyday. 

    However, it happened one day that the sister, who was in high school, had exams, and so she slept in because she had the day off school. Her brother didn't though. When the Dad came home later in the morning, he found his daughter sleeping, and his son gone.

    He woke up his daughter in a panic asking where the boy had gone! The sister realized she'd slept in, and had therefore forgotten to get her brother out the door for school. The Dad, not knowing where to start looking for his son, called the school to ask if they'd seen him at all.
 
    "Of course!" the school told him, "he's been here, like usual". The Dad and daughter couldn't believe it. This young man had gotten up in time, got his lunch packed, got himself breakfast, and caught the bus to school. All on his own. 

        Part of me goes, "ahhhhhh! He could have run away or been kidnapped!", but then that part of my brain quiets and I think, "man, that kid was far more capable than his Dad or sister knew!" It's not the Dad & sisters' "fault" at all. As caregivers to special needs individuals, we have a fierce dedication to life going well for them, but at what cost? What is the person missing out on because we're doing it all for them? 


      Step out. Have faith in the person you care for. Know that them becoming independent doesn't mean they don't need you, but that they need you more than ever to teach them. Just getting through life isn't enough. Don't we want our children to thrive, to feel confident and have purpose? Special needs or not, building independence is a life goal, some people reach that stage on their own naturally, and others need a boost. 

     Finding a balance between dependence and independence is hard, but it's an essential life skill that can't be ignored. So, start today, start right now! Look at the chore lists above, see what you gave give your child today to start them on the path of independence. ​
 
    I don't want it to sound like I'm preaching at you, I want to encourage you! Independence is so important for feelings of self-worth and builds confidence in our kids. Don't be afraid to give some things over to your special needs child and see what they can do. You may be surprised! 
 

​    The novel, "The Curious Incident of The Dog in the Night-Time", by Mark Haddon, explores the life of one particular young man (Christopher) with Aspergers (a form of autism. Read a review of the book here). Although Christopher does demonstrate some genius, I like that the book (& the award winning play) also show some of the struggles he faces.  This story is fictional, but it is clear that the author has put much time and energy into trying to understand some of the aspects of autism that make it "what it is", and shows us this through the eyes of young Christopher. 
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   Even if you're not "into" theatre, the video clip below that shows some of the background work that went into the play is very educational regarding the inner workings of a mind with autism. 

    The book, as well as the play, follow Christopher as he becomes an amateur detective of sorts, following the murder of his neighbours' dog. I found the book interesting on a personal level because Christopher, who is approached by a policeman investigating the dogs' murder, touches him, and Christopher reacts by hitting him. My son, Caleb, who has autism, struggles with this very same problem of not being able to process unsolicited or surprising touch, and has to touch back to relieve whatever it is his body is going through as a reaction to being touched. We're really struggling with breaking this habit, as he sometimes chases people down to touch them back, and can become very angry in the process. 
 
    Themes explored in the book and play include coping with loss, feelings of value and safety, understanding that chaos is naturally present in daily life (and trying to create order in that chaos), the importance of identity, as well as grasping at that illusive time in life between being a child and an adult where you want to be seen as independent, but also realize how much support you still need. 

    Those themes I touched on are topics that reach across the entire autism spectrum, whether the individual is high functioning, or lower functioning. Caleb is now 12, and is stepping into the last theme of wanting to be independent, but still needing so much support. Allowing him more freedoms is difficult because we want to keep him safe, we want to make life a little less complicated for him, and he still requires a lot of assistance.

    I will talk about autism and independence next Thursday, but for now, I just wanted to share about this book and play, and invite you to watch the video to help gain a new, better, or different understanding of autism. 

    The purpose in sharing about this story is because autism is so broad, and can look like so many different things. So, the more you read and become educated about it, the more you understand, and can show love, compassion, grace, patience, and support. 
 

     I know it's Monday the 3rd of April today, and World Autism Awareness Day was Sunday, April 2nd, but hey, when you're a Mom, and a Mom of a young man with autism, time doesn't always co-operate! 
 
   So, happy (late) Autism Awareness Day, and happy kickstart to National Autism Awareness Month! 
    
   This month I will be sharing about life with my son Caleb, stories and articles I've found interesting or helpful, and talking with other people about their experiences with autism. 

    From last year at this time until now, I can't believe the changes that have taken place in Caleb. Besides growing....and growing....AND GROWING (he's officially 1/2 an inch taller than me! Putting him at 5' 7 1/2'!!!), he's also jumped headlong into puberty, and has also been excelling at school (hallelujah!) : )  

     I hope that this month will be a time for you to get to know autism better, my son and our life with him, as well as raise awareness about autism, what it looks like, and how we can all help and make a difference for those living with autism! 

     Check out all my past posts about autism by clicking HERE. 

   Have you ever set out on a task and thought, "I sure hope I can see this through...", only to realize that at some point, you've done it? And not only have you done it, you find that there were many moments that were beautiful?

    You've climbed the mountain, you've changed your health, you've worked at a summer camp as the cook (true story!), you worked your butt off and saved an important relationship, you did a total room make-over, saved for a down payment on a house? Whatever it was, didn't it take you by surprise? Yes, you set out to do it, but still, to turn around and find that the view from this new place in your life is beautiful and unexpected? Doesn't the view take your breath away? 

     I was watching videos of my son Caleb, who has autism. The videos were from when we had our middle child, Abigail. Caleb was 4 years old at the time. That was 8 years ago. 

     Watching videos of Caleb when he was young, and seeing how sweet & happy he was left me feeling overwhelmed. 

     Those were hard times, and felt like dark days filled with uncertainty, but now, with my view from here, I see his ability, his character, his goofiness has always been there!

      Over the years, he's developed skills that have made him into an amazing pre-teen. 

      My view now shows me & reminds me that even if today seems dark & endless and if hopelessness wants to take over, it will be ok!

​   Doubts about the future and how uncertain it all is feels like a boulder strapped to my back. But I turn and look, and I see it all. My pregnancy with him, his birth, his first birthday, the red flags of autism and the drowning feeling it brought on. The suggested day care, speech therapy, occupational therapy, Sunday School, years of potty training, bowel and food issues, starting a gluten free diet, refusing to put on footwear, running away, being brought home by the police, jumping in the lake and being saved numerous times. Starting school, riding the bus, bringing his baby sisters home......it goes on and on, playing like a film in my mind. 

     You know when you're watching a movie, and everything seems hopeless, but you're sure it will work out. You're not at all sure how, but you are sure it will. 

     I didn't feel like that back when Caleb was young, but now, from here, I do feel that. I feel it so deep down in my heart and soul.

      I still feel worried about him as an adult, him getting a job, or living on his own, but I also know it will be ok. 

     I know this because I can see for miles behind me, and I can see that all along he's been getting stronger, smarter, more brave, more clever, more vocal, more friendly. He's learning, pushing, working hard, and becoming an amazing young man.

​
    Last Wednesday I went to watch him play in his first volleyball tournament. And, I needed to keep myself from crying! His classmates are so kind and helpful, and Caleb, as goofy as he is, can serve that ball like it ain't nobodies business! He just subs in to serve, but that's more than enough for now! He's great at serving! He's included, and he's spending time with the boys in his class in a setting outside of the classroom, recess, and field trips!

       I watched him with so much pride in my heart, knowing what the journey has been for him. When he was 18 months old and I was leaving him at a day care that told me he's mostly trouble, doesn't fit in, and struggles with every task, I never ever, in a million years would have dreamt of the day that I'd watch his team fight and win the A Championship, with him helping to achieve that! 

    The view from here...it's spectacular! 
 
    I know from here, while looking back, that I also still have a long way ahead of me with Caleb. But stopping to look back brings clarity, brings hope, and brings so much joy to my heart that it gives me energy for the future!

   My heart today is for the parent of a child with autism who is reading this, and they are in the middle of their storm. 

   Please know that you aren't alone in this journey. And also know that with love, and consistency, using your gut instinct, and raising your child like they are precious, will yield temendous results - perhaps not outwardly as you may hope, but in your heart, and in the heart of your child, no matter how severe the autism.

    The view you have now is not the view you will have forever, take heart in that. This autism journey is tiring, it's emotional, it's so up and down! But it's also beautiful. Because one day you'll see something so amazing in your child that your heart will be filled to the top! But you need to be looking. You need to be seeing the big picture, forward and backward. Last year really sucked for Caleb. But this year? This year has been so absolutely amazing! But I only know that because I am taking stock. I am checking out the view!

    You can do this. You're not stuck here forever. Autism is forever changing, moving and growing. 

    Trust me. Just trust me. The view will be (and is) amazing.


​xoxoxo

   Have you ever set out on a task and thought, "I sure hope I can see this through...", only to realize that at some point, you've done it? And not only have you done it, you find that there were many moments that were beautiful?

    You've climbed the mountain, you've changed your health, you've worked at a summer camp as the cook (true story!), you worked your butt off and saved an important relationship, you did a total room make-over, saved for a down payment on a house? Whatever it was, didn't it take you by surprise? Yes, you set out to do it, but still, to turn around and find that the view from this new place in your life is beautiful and unexpected? Doesn't the view take your breath away? 

     I was recently watching videos of my son Caleb, who has autism. The videos were from when we had our second child, Abigail. Caleb was 4 years old at the time. That was 8 years ago. 

     Watching videos of Caleb when he was young, and seeing how sweet & happy he was left me feeling completely overwhelmed. 

     Those were hard times, and felt like dark days filled with uncertainty. But now, with my view from here, I see his ability, his character, his goofiness has always been there!

      Over the years, he's developed skills that have made him into an amazing pre-teen!

      My view now shows me & reminds me that even if today seems dark & endless and if hopelessness wants to take over, it will be ok!

   My heart today is for the parent of a child with autism who is reading this, and they are in the middle of their storm. 

   Please know that you aren't alone in this journey. And also know that with love, and consistency, using your gut instinct, and raising your child like they are precious, will yield temendous results - perhaps not outwardly as you may hope, but in your heart, and in the heart of your child, no matter how severe the autism.

    The view you have now is not the view you will have forever, take heart in that. This autism journey is tiring, it's emotional, it's so up and down! But it's also beautiful. Because one day you'll see something so amazing in your child that your heart will be filled to the top! But you need to be looking. You need to be seeing the big picture, forward and backward. Last year really sucked for Caleb. But this year? This year has been so absolutely amazing! But I only know that because I am taking stock. 

    You can do this. You're not stuck. Autism is always changing & growing. 

    Trust me. The view from here is amazing.


xoxo

   

    Well, I usually post about autism on a Thursday....and I missed the last Thursday in April (April being Autism Awareness Month) because last week turned into a week of unexpected things and being away from home, and then iMovie being a complete and utter jerk to me! : )  Well, maybe it wasn't as personal as it felt, but the video I had made was ready, and I was just going to post it on Friday, but gee golly, I couldn't get anything to co-operate for me! So, it was a huge lesson in patience, and also in letting things go -  like posting on the correct day and in the correct month......let it go, Amy-Lyn....let it go.....deep breathing....ok, I think I'm ok now. 

     Anyway, here's the video for this years Autism Awareness Month! Caleb picked the song again ("Feel It" by TobyMac), and it's a collection of photos from last April to this April! A year of funny faces, wonderful singing, and a back to school interview too!

   I hope you enjoy it!

   
​    As a Mom of a young man with autism, I am always trying to understand how Caleb is feeling. It's a mystery a lot of the times - even things that may seem obvious (like a big angry outburst) may actually be less about feeling angry at something initially, and more about how he's not being understood. Sometimes I can tell what he's feeling (he's getting a lot better at sharing his feelings with us), and sometimes I just can't.  

   Recently there was a story from the National Autism Association (I saw it in The Mighty) about a 10-year-old boy named Benjamin, who’s on the autism spectrum.

    This boy wrote a poem titled "I Am", and it opened my eyes and broke my heart to the feelings of kids with autism. I realize not every child will feel the same way as the child who wrote this poem, but getting a chance to peek into the mind and feelings of someone with autism is enlightening.

​    His mom sent the poem in saying “he was given the first 2 words of every sentence. This is what he wrote...…"

I Am

I am odd, I am new
I wonder if you are too
I hear voices in the air
I see you don’t, and that’s not fair
I want to not feel blue
I am odd, I am new
I pretend that you are too
I feel like a boy in outer space
I touch the stars and feel out of place
I worry what others might think
I cry when people laugh, it makes me shrink
I am odd, I am new
I understand now that so are you
I say I “feel like a castaway”
I dream of a day that that’s okay
I try to fit in
I hope that someday I do
I am odd, I am new.

    Lately I've been listening to the soundtrack for "Matilda The Musical". It's such a wonderful and funny soundtrack, but there is one song that when I heard it for the first time, I just started to cry.

    In order to understand Caleb better I often try to put myself in his shoes. I imagine what colours & sights, sounds, lights, touch & taste must be like for a young man with sensory processing problems. I wonder how it feels to know you're about to unravel and have a "meltdown", and if it's possible to stop once you're heading down that track?

    I feel like this one song, titled "Quiet" from Matilda The Musical, gathers up some random thoughts that I think could describe people with autism and what it feels like to become overwhelmed with what is going on around around them. But, more importantly, how it feels when they block it all out: whether by those characteristic, quiet, "zoned out" moments kids with autism have, or by covering the ears and shutting the eyes up tight. Or perhaps physically having a big fit, with kicking, screaming, etc.? I know that last one doesn't seem "quiet", but I imagine having all the things that can't be said trapped inside. All the things that pile onto a person with autism, who is trying to process this crazy world as best they can, and how maybe having this big, physical outburst is like draining all the noise, the smells, the sights, and the mountain of everyday stressors out of the body, and being left quiet, and feeling tired, but better? 

    I've included a video of one of the Matilda's singing this song because the emotion behind the acting and the music help to fully capture what a child with autism might be feeling.      

**Disclaimer: this song (as far as I know) wasn't written with autism in mind, it's just what I've heard in the song that sounds like autism to me*

Quiet
By: Tim Minchin
From Matilda The Musical

​Have you ever wondered, well I have.
About how when I say, say red, for example.
There's no way of knowing if red
Means the same thing in your head
As red means in my head. When someone says red

It's as if we are traveling at, almost the speed of light
And we're holding a light
That light will still travel away from us
At the full speed of light, which seems right in a way

What I'm trying to say, I'm not sure

But I wonder if inside my head
I'm not just a bit different from some of my friends
These answers that come into my mind unbidden
These stories delivered to me fully written!

And when everyone shouts like they seem to like shouting
The noise in my head is incredibly loud!
And I just wish they'd stop, my Dad and my Mum.
And the telly and stories would stop just for once!

And I'm sorry, I'm not quite explaining it right.

But this noise becomes anger, and the anger is light
And its burning inside me would usually fade.
But it isn't today!
​
And the heat and the shouting.
And my heart is pounding.
And my eyes are burning
And suddenly everything, everything is.......

Quiet

Like silence, but not really silent.
Just that still sort of quiet.

Like the sound of a page being turned in a book.
Or a pause in a walk in the woods.

Quiet

Like silence, but not really silent.
Just that nice kind of quiet.

Like the sound when you lie upside down in your bed.
Just the sound of your heart in your head.

And though the people around me.
Their mouths are still moving.
The words they are forming,
Cannot reach me anymore!

And it is quiet.

And I am warm.

Like I've sailed.
Into the eye of the storm.

    
    It can be hard to grasp what a person with autism may be feeling, but it's important to try to understand, and to help the individual with autism learn how to express those feelings in a way that helps them feel understood, accepted and loved.

    Stop right now and imagine you are at an event. It's just really familiar people, so the conversation is easy, food is great, weather is perfect. How are you feeling? Could you express your feelings exactly and perfectly to someone else at the party? Would they fully understand? The answers to those questions may all be yes. 
 
     Now, you're at that same party, but you have autism. The faces here are all of friends, but they are all talking at once, and even though someone is speaking directly to you (which is stressful), you still hear every other conversation around you. The food is unfamiliar....it seems like everyone else is enjoying it, but you take a bite of something and it makes you want to gag. It doesn't taste bad, it just feels strange in your mouth. You see each colour around you 10x brighter now, maybe so bright they're blurring. Your nice party clothes feel like they have tiny little claws and they are digging into your skin to stay on. How are you feeling now? Could you express your feelings exactly to someone else at the party? Would they understand? Oh, I forgot to mention that your expressive language skills are extremely lacking. 

     How one must feel when the world appears completely different to them is beyond me. I try to understand, I try to have empathy, but can I ever really know? 

     Finding things like the poem or song mentioned above help me stop and re-consider what I know about how my son feels. It gives me more insight, more words to use to help him when he's lost for ways to express himself. It keeps my empathy warmed. 
    
    Feelings are so confusing in general, right? They are subjective, abstract, and complicated. So, add in some of the usual things people with autism are dealing with like trying to understand social cues, expressive language (saying what's in your head), and processing what you're physically feeling from the excessive sensory input, and trying to separate that from what your feelings are....?  Geepers. 

    Show some extra grace to those who need it. Offer a word or two to help the person express the feelings that are present, and above all, remember that individuals on the autism spectrum have feelings, whether or not they appear as you'd expect them to. 

 
    

​    Too often (and I'm guilty of this) talking about autism can become a gripe-fest. And yes, I see the irony in me griping about it....

    But really, if the people who care for and love people with autism want to see the world embrace these special individuals we need to quit playing our sad song everywhere we go!

      Jem Lester’s debut novel Shtum, which draws on the author’s own experiences as the father of a profoundly autistic non-verbal son, said in an article in The Guardian that he believes it is important that people continue to challenge public conceptions of autistic children. “I didn’t actually set out to write a novel about autism because my whole experience was still very raw at that point and we’d had to really battle to get Noah into residential care. But I also knew how hilarious and joyful he is and how great he is to hang out with and I wanted something that reflected that. I didn’t want to write a misery memoir.”       

       A new BBC show, The A Word, revolves around a young boy with autism and his family and community. The writer of the show, Peter Bowker, said “It was incredibly important that it was funny,”  “I didn’t want to beat people over the head with the story. I want viewers to relate to the family and what they’re going through. There’s an aspirational element – they’re building their own business – and on the surface life is not perfect but pretty damn good. Humour is part of that and also the idea that they are a smart, articulate group, but they can’t talk about this one thing.”

  
     Our life with Caleb is a roller-coaster, but don't forget, roller coasters can be really freakin' fun!!! : )  You might feel sick, you might think "get me off of here!", but it can also be exhilarating, if you allow it to be.
​

    I'm having a hard time articulating what I want to say....

    I guess what I'm driving at is this: in the journey of autism, you can look at every set-back, every road block, every meltdown, every stink-eye from strangers who are ignorant to you and your life, every disappointing moment, and choose bitterness and misery. 

    Or you can choose joy. You can choose gratitude. 

   Back in March I wrote about Ezra, our daughter we lost to a late term miscarriage, and how in that we choose to have gratitude, because gratitude produces joy in our hearts.

   The same applies to our lives with autism. Do I feel exhausted a lot of the times because of Caleb's troubling behaviours? Of course! Do I get sick of hearing about others peoples opinions about how I should be raising and taking care of Caleb? Duh. Can I grump around all day and cry the blues to everyone who would listen? Sure could. But I don't want to.

    Caleb, even though he's delayed in many ways, even though this world must seem exhausting to him and his senses, even though he must feel how mis-understood he is, he is more often than not found with a big ol' smile on his face! He's often laughing about something (and a lot of times it's something that just popped into his head and he hasn't said out loud, but he's just laughing!). He's often "telling jokes" - he's actually only really got one (knock knock. Who's there? Owen. Owen who? Owen the saints, go marching in...). It's a doozie, and he actually finishes it with "owen the saints they march and march...", which really makes it funnier somehow! He's able to burp on demand, and can burp anything you want to hear! The alphabet, the Spider-Man theme song, anything! It's disgusting, but it makes him so happy.

     Not all people with autism are geniuses. Not all people with autism are savants. Not all people with autism are mentally retarded.

    All people with autism are beautiful though, as is each and every life. 

    Choose to see the beauty there, and choose to see the happiness and joy there. 

    Real life with autism is all sorts of things, but I want to choose gratitude that I have a son who is in excellent physical health, a son with a sense of humour, a son who loves deeply and has empathy for those around him. A son who eats his pasta one painstaking noodle at a time, and loves bagels with peanut butter and brown sugar (a favourite when I was a kid too!). I am grateful that Caleb is teaching his sisters through his life that people can be very different from yourself, but still loveable and worth loving. I'm grateful that no-one can ever accuse us of not cuddling our cat enough! : )   

    Choosing gratitude fills your heart with joy. This joy isn't associated with physical and social circumstances! It is an ever-present possibility, reachable by a simple decision. A decision to choose gratitude.