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!
April 2017 - "Meant To Be"
April 2016 - "A Year With Autism"
April 2015 - "Caleb's Autism Adventures"
April 2014 - "Caleb"
Thanks for coming along with me this month!
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.
Today I am going to share an interview I recently did with Caleb, my son who has autism.
I feel like I should have been interviewing Caleb every 2 weeks for the last few months because he has been growing and changing A LOT!!!! I can't even grasp the changes he's undergone physically! Yikes!!! I am the mother to a HUGE man-child! : ) He;s got a man-voice! In my sentimental state I created a last 7 years photo collage for you to see! I stopped at 7 years back for no reasons in particular. I could have kept going all the way to birth, but that would have been a huge collage!!!
Anyway, I wanted to share the most recent interview with you today as part of Autism Awareness Month. I asked him more questions than I usually would, and tried to dig a little deeper to let you get to know Caleb even more!
That's all for today!
We head out today to spend the weekend with family, but I wanted to make a quick appearance here to share some delicious and simple treats you can make for Easter (or anytime, really!)
I've got 2 treats to share, both wheat free, both could be gluten-free too (if you used gluten-free Rice Krispies).
I recently saw some little rice krispie nests from Crafty Morning, and thought they looked so gosh darned cute! I knew they'd be easy to make, but I was going to make some personal preference adjustments. For starters, the beautiful nests that Michelle at Crafty Morning made had an edible grass in them...? I've never even heard of such a thing, so I decided I would make a quick and small batch of green buttercream, and pipe some grass into my nests. Also, she uses Robin Eggs candies (chocolates?), again, I don't know what they are. But I do know what Cadbury mini eggs are, and I know we all loooooove them in this house, so that swap was a no-brainer!
The second sweetie I saw was Springtime Marshmallow Wands from Two Sisters. I love mallows, and chocolate, and my brain said, "Hey! You have sticks!", so then it just seemed like a natural step to go ahead and make these!
So, here you go! Enjoy!
Rice Krispie Nests
Makes about 36 mini nests
Ok, that's all for now!
Check out a post from last year of a delicious round-up of Easter Treats, all no bake, and most gluten-free!
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!
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.
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.
Hi, I'm Amy-Lyn!
I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids!
Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : )
Read more about me by clicking here!
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