We had years and years where every day was a serious struggle with Caleb. From sensory to communication problems, the day in and day out of raising this young man with autism was exhausting. Then something happened. It wasn't sudden, it was very gradual. Caleb started to improve at things like communicating, and life got a little easier. And then, we lost focus. It was like because things had gotten manageable and the day to day seemed like it was going ok, we settled in. We were coasting along, just in maintenance mode, and getting lazy. We rode that wave until Caleb's regular E.A. at school was away for a few weeks, and then things fell apart. He was misbehaving for his substitute E.A's and acting like a child who couldn't listen, sit and focus, follow direction, or just be decent. I got called often during this time for his bad behaviour, and I even ended up going to the school on one occasion to get him in trouble myself. He had been grabbing his iPad or laptop and running off with it and not giving it back if asked by his substitute E.A or teacher. They called me, and told Caleb they would, but that didn't spur him on to give it back. I have spoken with him on the phone before to verbally scold and direct him, but in this situation he wouldn't even come to the phone. He was being a full-on brat! Yes, I know he has autism, but he knows right from wrong, he knows to listen (and is capable of doing so), but most of all he knows he can't grab his special school equipment and run off with it and be a bugger. When I got to the school and walked into the room he was in.....oh boy, his face turned red to white in an instant, and he knew he was in trouble. I took him to another room and talked with him about being kind, making good choices, and being a young man that makes God and his Mom & Dad proud; a boy who listens to his teachers, works his hardest, and tries his best to make his life and others lives better. He looked so sad, and started to cry. I told him he needed to apologize to his teacher, and also to his E.A., and that I expected him to do better. Not that I hoped he would, but that I expected it. The time without his regular E.A., and this situation where I needed to go into the school to reprimand him snapped Adam and I out of our daze. Caleb may be doing "better", but he's not a finished piece yet. He's getting older, more mature and smarter. These things are good...but they all offer new challenges we need to overcome. We realized that in his genius he can turn his "handicapped' switch on and off depending on who he's with and how well they know him. When I went into the school that day and talked with him, his teacher afterward said (something like), "hearing you talk to him that way was eye opening. I could tell he was hearing every word you said and you didn't dumb it down at all". He had been doing just enough to get by, but not enough to shine (as we know he can). Now, most of the 10 year old boys in his class are a little lazy, kind of stinkers, and like to see what crap they can get away with. So, to a degree we know it's "normal", but Caleb has never been "normal", and we don't necessarily want him to be! We are looking for a family standard of behaviour, not a disabled version of it. I don't want any of my children being bad listeners or making poor choices. We are in a place now with Caleb where we need to look ahead more than ever. In a few years he will be in high school (ahhhhhhh!!!) & getting a job, then after that perhaps a post-secondary education or just continuing to work and become more independent.
Whatever his life looks like in the next few years, we need to know his foundation is solid. That includes (and is not limited to) having the self-control to make good choices, understanding the importance of listening to and following orders/directions from those in charge, being a solid communicator (whether verbal or by trying/writing), and having excellent reading skills. Our focus for so long was to just get life to run smoothly...(ish). And then when it was, we stopped the work. We forgot that our real goal was not just 'get through the day!!!', it was to raise a beautiful, genuine, caring human being. So, we're back on track. We're pushing Caleb to do his best and be his best. For him (right now) that means having "blue listening ears" (blue is positive in Caleb-speak), making good choices which means using manners, being patient with his sisters, and not back-talking, and to continue to push him to read and write better. The day in and day out of life with Caleb still has it's struggles. Things have improved though, but we want more. We want exceptional. We want it from all three of our kids, and it means different things for each of them. No cookie cutter behaviour or goal will work, but rather an individualized version of our standards. And Adam and I need to be focused on this daily. It's about correcting with love, finding teachable moments, and living by example. If our focus for Caleb is on his long-term good, we won't ever rest or become lazy. I want to look back and know that I was always doing all that I could to propel him into the life he was made to live.
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I missed Autism Awareness Day! Ok, I didn't miss it, but I missed posting a blog about it.
Life has been nutty lately, and yesterday we headed out early to visit family for the weekend, and I just never got a chance to sit at the laptop and write. I'm writing this post from my phone using the Weebly app, but I'm not super familiar with it and am not sure how this will work! Anyway, what I really wanted to do yesterday was to post a video a friend sent to me. It's a bit long (20 minutes), but I found it to be one of the best videos on autism tht I've seen in a long time. The video has 3 different young people who each have different autism from one another. It is a great example of how autism can be so many things to so many people. Anyway, I 'missed' Autism Awareness Day, but this month is Autism Awareness Month, and I will be sharing about our lives raising an amazing young man with autism and about the struggles we encounter, the disappointments we've had, and our hopes we hold onto. xoxo Caleb has spent the last few weeks playing with cars. I mean actually playing with them. In all of Caleb's 10 years of life, he has only ever sat and spun the wheels on toys cars, which is a "normal" thing for a child with autism to do. Actually, spinning wheels on a toy is one of the listed symptoms of autism because it is something a lot of children do due their lack of ability to see the "big picture" and get transfixed by the details. It started with my Mom giving Caleb a hot wheels track thingy that gets attached to a wall and shoots cars out of it. I know, it sounds awesome/dangerous, right? Then he got a remote controlled car (which, instead of standing still and driving it around him, he would be driving it and chasing it around!). Then, at Thanksgiving we went to a demolition derby, which Caleb enjoyed fully (in years past he's only lasted a short time before having a breakdown), then he went to a friends house where she had Lightening McQueen (from the Disney movie "Cars") as well as some other characters and toy cars, and suddenly, it clicked. Toy cars can be made to do things real cars do!
It's strange that something so small could be noticed, because in a "typical" boys life, playing with cars is one of the first things they do! For us, it's been years of getting cars, trucks, and tractor toys as gifts for our boy, only to have him like or dislike it based on it's wheel spinning abilities. Then, something else happened. Caleb started playing with a toy Nerf gun he had been given. I showed him how to load and shoot it, and he took it from there. He played with it outside for a long time, shooting at our enormous apple tree, then the next day he set himself up in our front entry way to shoot after I told him shooting in the house would likely be a bad idea because he would break something. He got a chair, sat down, and said, "Caleb will shoot small!" (translation-"If I shoot sitting here it won't go far and I won't break anything"). It was logical, he had problem solved, and then he said, "Mom will make a video of Caleb!". He insisted I get his iPad out and film him playing with the gun. I'm glad he made me though, as it was a big moment for him. He's had guns in the past that he had no interest in because it would have required him to remember the process (multiple step things are difficult for Caleb, and a lot of children with autism), and it would have required him to play pretend, which he certainly didn't do. Now suddenly, and I am really not sure why, he is playing with it like it's meant to be played with! These little things, these "normal" things that other kids are doing naturally are such a big success for Caleb. He has come a long way in the last few years (a very long way!), but when he starts something like playing with cars properly or shooting a toy gun, things that no-one has taught him specifically, things that he has just observed and figured out on his own, those moments really bring me joy. I want to know he can be school/book taught, but I really want to know he can look, observe, and learn from the world around him on his own. As an adult he'll need to do that more and more; he won't necessarily have anyone there with him all the time pointing things out and leading him. As a Mom of a special needs boy, it gives me a chance to let out a little sigh, knowing that everyday he's stepping up, and growing up. It's not that I want him to be a "normal" kid, that would change him completely, and that's not what I want at all! I just sometimes want some normal things for him and his life, to bring him a new and more fulfilling type of enjoyment. These two "normal" things can open up doors for him for playing with friends and making friends too. Spinning wheels on cars may have been fun for him in his own way, but he did it silently, in his own world, shutting the rest of us out. Now, him and the cars are a full-blown, wildly noisy event that sometimes involves building ramps out of toys and books, and seeing how far he can launch a car and make his sisters laugh. That is friendship building, that is problem solving (getting the right height for a ramp to ensure it ends up where he wants it!), and it looks like a lot of fun! Caleb impresses me with how far he's come, he also reminds me that "normal" is relative. He's been on a changing scale of "normal" his whole life, refusing to be put into any box. I don't believe he does it purposefully thinking, "I will not be labelled!", but it's his natural drive, his fire and stubbornness (aka-European heritage!!!). It reminds me that we are who God made us deep down, but we can always be trying to do things better, with more excellence. I can't expect Caleb to do this if I'm never doing it myself. I'm being his example, and he is being mine. Besides, as my husband always says, "normal" is just a setting on a dryer. And nobody wants to be that! :) People who know my son Caleb know that he is a great many things. He is cheeky and funny, he is bright and smart, he can be so loving, and thoughtful. But a side of Caleb people often don't see is the one that pokes at my every nerve; it's a Caleb that won't back down, even if I've asked him to. He back-talks, and starts endless fights with his siblings. And some times, I loose my cool. That's a really nice way of saying that I have a bad temper, and Caleb is often staring down the barrel of that temper. As an example, the kids were eating breakfast recently, and they were each bothering one another. No particular child was to blame, they were all being butt-heads. I was tired of hearing the whining/bickering/grumbling, etc., so I said, "I think everyone just needs to eat their breakfast quietly and not talk anymore at all". I said this in a very nice, calm voice. All was quiet....for about half a second....then I heard, (mumbled and low) ".....Mom will to be quiet.....". I look at Caleb and say, "excuse me, but you don't back-talk your Mom. I asked everyone to eat quietly so that breakfast wasn't all fighting. No more talking please" (still calm-ish, but my words were getting a little more purposed). "Abby and Keziah will be quiet for Caleb...." said that same low, mumbled voice. For real?!?! Now he was blaming the whole thing on his sisters! **Temperature rising**.... "Caleb", I said/barked, "I've asked you to stop talking, and so far you haven't! You need to listen to Mum, and stop...talking...now". (this is the moment where the internal pot is about to boil over, and you either move it off the heat, or leave it for one more second and it's pouring all over the stove!). "Grrrrrhhh"-a loud grumbly/growl of disapproval from Caleb. His sisters faces say they know what comes next. The pot boils over. I marched around our kitchen island to where Caleb was sitting, and said in a loud voice, "I'm not sure you heard me asking you to stop talking?. "I think your ears may be broken, so you need to go lie down in your room until you are ready to listen!". By now I'm yelling. Caleb runs upstairs crying and screaming, and shouting, "Mom will be a good listener for CALEB!!". Seriously? He just won't quit. This argument could have taken place between a Mom and a regular obnoxious 10 year old boy, really.
The girls can often see when I'm heading into scary-ville, and will back off from their fight. Caleb doesn't do that. He is so focused on what is in his brain and he doesn't notice the change in my voice, my facial expression, my body language. Then suddenly I'm lunging at him and he'll start to cry and say something like, "Mom is very not nice to Caleb". Which is true. At that moment, I am not being nice. But I was trying, he just didn't notice! I struggle with finding the balance between keeping sane, but not letting him get away with poor behaviour. I could ignore him and remain semi-blissfully ignorant. I could pretend I didn't hear him back talk me (because sometimes he does it so quietly I think he really thinks he hasn't been heard), but then I wonder, "what kind of person will this make him?". I want my kids to mind me, and do as they are told, not because I am the all-powerful Mommy, but because listening to those who are in charge of you is a life skill! But if you add a little defiance from a child prone to mind-blindness (an autism trait where the individual can't understand that each person has their own thoughts), and mix in a short-tempered Mum-gosh, you've got a disaster heading your way! The reality is that I need help with Caleb more often than I care to admit. The last incident where I lost my marbles on Caleb, my 5 year old stepped in to help. Bless her heart. I knew I was boiling hot angry, and I said, "I need 5 minutes alone!!!". As I sat by myself in the living room, I could hear Abigail saying to Caleb, "it's alright Caleb (he was crying). Maybe you could lay down in your bed for a few minutes until you feel better?". To which Caleb replied, "yes!", quite angrily. I beat myself up over getting so heated with my special needs son, but I know him. I know what he is capable of. I know he understands the words, "stop talking". I want to push for the best in him, I just don't want to loose my mind while I'm pushing! I want and expect the same manners and behaviour from him as I do from his neuro-typical sisters. I also can be close minded as to what other things may be bothering him at that moment (lights, sounds, smells, etc.) But then again, I go full circle and think, "extra stressors or not, I need to set a standard for him!". I want him to learn to cope and adapt, and use his words to explain if something is going wrong for him. Not just back-talk. At the end of the day, at the end of a melt-down (either his or mine!), there is learning and growing to be done. I am learning to sit down and talk with my kids and to apologize for getting so angry. Caleb is learning that his life is part of a bigger organism-the family. He needs to be a co-operating member, not just an observer/disturber! Parenting a child with autism is a very emotional journey, and different feelings show up at different times. There are easier days and harder days, but I love Caleb no matter what. We're a good pair, I guess. We both lose our minds together-neither of us should though, so we'll work on it together too! I literally cannot believe that I have been writing this blog for a whole year (technically a whole year tomorrow the 18th, but geez)! This year has been an up and down one, and parts of it have been chronicled here! On the first day I decided to start the blog I put up 6 posts! Haha, I remember my sister saying something about being a little ambitious, and I just thought, "I dunno! I just had a bunch of things I wanted to post! I used up an entire weeks worth of ideas in one day! Fail. :) Anyway, I wanted to take today to highlight some of my favourite recipes, DIY and life hack ideas, and some of my posts about autism. I hope you take the time to click through and enjoy bits and pieces of what I enjoy! ...But first, I want to give you a little history here on a bushel & a peck! Not history about me, but the term itself! Because I know you were dying to know! ;) Well, a real bushel & a peck are dry measurements in agriculture. There's a pint, quart, gallon, peck, and a bushel. But the real reason people know the phrase, "I love you, a bushel & a peck" is from a song written for the musical "Guys & Dolls". Back in 1950 the song was recorded by many artists, and the song was already so well known before the musical even opened that they moved the number from the second act to the first. In the context of the show, "A Bushel and a Peck" is the intro to the Hot Box, a night club in which the headliner is Miss Adelaide. Doris Day (among many others) recorded a version of this song, but she changed the lyrics a bit to remove some of the more direct references from the show and to clean it up for 1950's radio. And there you have it! If you've never seen Guys & Dolls, you should, it's a good show! Now, onto my favourite and most popular posts (p.s., just click on the green titles to go to that recipe!)! Bad-For-You Favourites! This pie....oh this pie!!! It is honestly just the tastiest thing you'll ever eat! The homemade graham crust, the chocolate in the form of semi-sweet chips and chocolate bars of your choice, and gooey mallows....drool.... When my sister invented this evil little sandwich I loved her so much! :) Inside of that lovely, grilled and icing sugar dusted bread is peanut butter, Nutella, and marshmallows. Oh my goodness gracious, it is too good to be true. D.I.Y. & Life Hack Favourites This project felt long in coming, but I was so glad when it was finished as it gave me the extra cupboard space I needed, and it was so unique and fit my house perfectly! Hazaa! Bubble Blowing Life Hack Just do this and thank me later. :) Paleo Favourites I never thought these slightly strange looking cookie would be so popular, but it just shows you can't judge a book (or a cookie) by it's cover! The Huffington Post even had this cookie in one of it's online articles, making this ugly, humble cookie my most viewed recipe EVER with over 20,000 views! This easy-peasy recipe has been pinned on Pinterest more times than I thought it ever would be. It may be paleo, but it's crazy simple to make, has all regular pantry staple ingredients, and you can't beat a crock pot meal that's ready for you at super time! Autism Favourites I love this post because it was all Caleb! His answers to my questions, and "hearing" what he thought about different things. It shows how sweet, and strange, and fantastic he is. This post was the first I ever did on autism. It was inspired by the fact that he was getting a Terrific Kid award at school for empathy. I still admire how he sees the world through very empathetic eyes, and I try to practice empathy whenever possible. Gluten-Free Favourites I am always amazed by this recipe, and how often it is viewed and pinned on Pinterest. It literally was a recipe of. "oh crap! People are coming over! What do I have!", but I think that kind of recipe hits home for a lot of people! It is simple, but tasty. Win/Win! This dessert is a layer of brownie, a layer of mallow fluff, and a chocolate peanut-butter Rice Krispie layer! What? I know! I wanted to pick my all time favourite post, but I couldn't! In fact, my little Dory (from Nemo)-like brain was actually going through the blog and going, "oh yeah....I forgot about that....". Whomp whomp. Memory fail.
Suffice it to say that writing this blog has (so far) been a blast. I have enjoyed being more experimental in the kitchen, getting some of my thoughts out of my brain, and knowing people like a few of the recipes and articles is a great big cherry on this Sunday! I'm still writing this blog, fear not. I have been toying with the idea of buying my domain (instead of having it hosted by Weebly), and maybe changing my design too....but we'll see. I'm not a big fan of change! So (insert cheesy music, and hear my voice all teary like I'm winning an Oscar), to all those who read here regularly, or just now and again; to those from Pinterest and Foodgawker who share recipes and ideas (hint hint-feel free to follow or 'heart' me!), and to my Mom, who almost never remembers to read my blog, merci beaucoup! :) I know, I'm a cheeky bugger. Here's to another year! Woot woot! (I love you Mom) xoxo Amy-Lyn Those who are even a little familiar with autism know that routine, routine, and more routine keep life as stress-free as possible. It helps a person with autism feel some order in their world that can feel chaotic. But beyond routine, what can help a child, with autism or not, feel secure and safe? I believe the answer lies in traditions. A tradition is something you do over and over, either daily, weekly, monthly, yearly, etc. you get it. It is habit, ritual, it sounds like autism, really! But why is it different? Why is tradition important for a child with autism, and for a family in general? Growing up, our family had many, many traditions that I carry today with my own family. Sunday morning pancakes (o.k, we do Saturday, I'm not quite as amazing as my Dad!), singing prayers at the dinner table, Easter morning getting new socks, underwear and a skipping rope or bubbles at your place at the table....and chocolate too, of course! Another important family tradition was going to the Rockton World's Fair on Thanksgiving weekend! This is a tradition I could never abandon! Caleb is now 10 years old, and has been going to the fair his whole life! He looks forward to the fair for WEEKS in advance! As soon as the calendar moves to October, he is non-stop fair talking. He loves the barn with the birds and rabbits in it, and literally shrieks and squeals when the ducks start a "conversation" (if one starts quacking, they all start quacking!), or when a rooster crows, and he'll say (super loud), "Hey rooster! It is not the sun coming up!". He loves the arts and crafts buildings, especially the walnut shells-turned-characatures. These things are kinda weird, but they've been at the fair for as long as I can remember! And he loves all the pumpkins! The big, the small, ALL of them! I think what Caleb loves the most is the demolition derby in the evening. This year he was amazing; cheering, clapping & laughing, but still staying calm. This is where the demo-derby differs from previous years. In years past, Caleb will be cheering, then yelling/cheering, then yelling at the drivers saying (with very big hand gestures), "You are not to be crashing, you are very danger!!!", or "where is the Chevy Cavalier?!?" (he always wants one in the derby) and he would slowly get more and more upset until he was crying, and would shut down, then we would pack up and leave. Caleb has had serious meltdowns at the fair, it seems obvious that he would be overwhelmed, but we kept going back every year, hoping it would be better. This past weekend at the fair, we were in one of the buildings that has enormous lollipops in it, and I said to my husband, "remember that time when Caleb ran away, and we chased after him, and we found him grabbing one of those lollipops and ripping off the plastic wrap....so then we had to buy the $13 sugar and food colouring on a stick?" Caleb was probably 3 or so then, and we mostly just kept him strapped into a stroller to avoid having him run away. A few years ago, when he was too big for a stroller, he disappeared. This occasion was particularly annoying because there was my husband and I, and 2 other adults with us, and we all thought someone else was keeping their eye on him. We got the police that are always at a fair to help us track him down. He had only gone maybe 50 feet from us, but he had sat himself at a picnic table with a group of complete strangers, so he was blending in. The people at the table thought he was pulling a prank because he just walked over, sat down, didn't say anything, and ignored them when they talked to him. Classic autism symptoms can be sort of funny, I guess! So, with all the grief from years past, why did we keep going? Because creating family traditions helps kids to connect generations, and to feel a sense of identity. It helps to strengthen family bonds, it offers security and comfort, creates a solid sense of time, and it teaches values. My kids know that I went to the fair throughout my entire childhood, and I hope when they are older with their kids at the fair, they will say, "Oma {me!| went to this fair her whole life" (and they'll hopefully point out where I grew up, likeI show the kids every year). This connection to the fair and myself will give my kids a sense of heritage, and of identity. We feel the need to connect ourselves to the world; it's so large and we want to feel grounded, and tradition does that for us. Family bonds are formed and strengthened through tradition and those bonds create a sense of comfort and security. When a child knows that something is coming, something that they have experienced on a regular basis, it helps them to feel something constant. Our busy lives of this century don't foster sameness. It fosters fast-paced, ever changing feelings, trends and ideas. This idea of traditions as comfort and security can be easily seen when life has sudden changes in it; a move, a death, etc. Being able to continue something that happens regularly (even something as simple as reading at bedtime), can offer calm to the storm. Sensing time is crucial for kids. Knowing that going to the fair means the fall reminds my Abigail that her birthday is coming. Christmas time reminds Keziah her birthday is coming, and Canada Day celebrations send Caleb into birthday happiness, knowing his party is in the summer. The kids smelling pancakes in the morning remind them that it's Saturday, and there's no school! Time can feel abstract to a child, and traditions nail the idea down for them. Lastly, traditions teach values. The value of education by reading at bedtime, for example. Or of the value of relationship with God by praying at meals and bedtime. And most importantly, they teach the significance of family values like spending time together and getting to know each other through activities like regular family dinners, weekly walks or bike rides, or after-church lunch at Swiss Chalet! All of these things make tradition so important, and if they are important for a neuro-typical child, they are equally as important for a child with autism. If we had thrown in the towel regarding the fair because Caleb had so many difficult years there, we would have robbed him of the joy he now feels knowing it is coming. Somewhere in the grief of his meltdowns, running away, and making us buy expensive lollipops, Caleb was building an idea, and catching a glimpse of what could be fun at the fair, what could be memorable. I know he felt some safety in the tradition, even if it was mixed with anxiety for some of his years. I feel badly for families who shut themselves out from the world because of their child's behaviours associated with autism. Am I saying, "just get over it!". Gosh no, I can't say that. But what I am saying is to create traditions, regardless of the behaviour. If you have a family where your child with autism came later in line than the first born, and you had traditions in place before they came along, continue in those traditions! For the sake of your other children, but also for the sake of that child with autism. I really believe tradition, despite bad behaviours, can help a child with autism feel like they are a part of a functioning family. I think that children with autism anywhere on the spectrum have a sense of the chaos they cause. And I, trying to think empathatically, know that I would rather feel like life is still happening around my meltdowns, instead of feeling like life had to stop. Creating family traditions doesn't need to be complex, and you don't need a million of them either.
Think daily traditions like kissing your kids first thing in the morning, or weekly traditions like a Saturday morning walk, pancakes, a trip to the library, or for kids going to school, a Monday lunch note! You can have birthday traditions, like telling your child about the day they were born, or serving cupcakes for breakfast! Yearly or holiday traditions could be going to a fair, going to an apple orchard in the fall, reading "The Night Before Christmas" on Christmas Eve, or having a first day of summer party. Think back on your life, and see the traditions that you had as a child, and what you have carried into life now. Remember how important they are, and if you don't have any, work them into your life! I know this post was more about traditions than autism, but watching Caleb this year at the fair was so rewarding. We saw, for the first time, the fruit of the tradition of going to the Rockton Fair. We enjoyed ourselves as a family. We laughed, ate treats, and rode the ferris wheel at 10 o'clock at night when all the fair lights look so beautiful. Last year Caleb had a meltdown because he wanted to ride in a very specific ferris wheel car (it's not a car, but I can't think what the name would be?!). This year, he didn't even mention it! He just happily jumped into the one he was sent to. He was so happy at the derby, and enjoyed the time with all the cousins and aunts and uncles we meet up with there. I am thankful I loved the tradition of going to the fair too much to give up on it because of the things Caleb would do when we got there. I know I love going to the fair, but I can see how much more Caleb and my kids love going to it. It is a tradition I hope continues long after I'm gone, and one Caleb continues to enjoy his whole life! I know, this post title sounds like a Miss Marple mystery, but it is an actual issue. Parents of kids with autism murdering their children (and often committing suicide themselves), and saying that, "it would be better this way".....it makes me feel sick. The sad and scary part in all of this is that our society tends to victimize the parent who committed (or attempted to commit) the heinous act, not the innocent child who is the actual victim. I understand feeling stress caring for a person with special needs, I understand being so frustrated and hopeless. I understand that everyday brings a new challenge. But murder?!? In a lot of the news stories, the bottom line is, "families who have kids with autism need better support!". So, what they are saying is that with better support, innocent children won't be murdered? "Give me support or the child dies!!!"-That's what they are saying. Sounds foolish when you say it plainly, doesn't it? Are more resources needed? They sure are! But are a lack of resources permission to take your own child's life? I shouldn't have to answer that for you. People say foolish things to me like, "oh, it must be such a struggle raising a kid with autism..." (with a sigh and pity in their eyes). They do this because they hear news stories that make parents who decide to do unthinkable things seem rational, because it is sooooo hard raising a kid with autism. It is hard! But so is raising "typical" kids! Are the issues different? Yes. But are the issues different between each of my kids anyway? Yes! I'm stuck between explaining how my life is different, but not that different. I can't make light of the things parents go through when raising a child with special needs. But I also can't say that raising them is so much worse than usual, and that ending that persons' life is understandable. The media supports the idea (hopefully not on purpose) that blaming an autistic child for his/her own murder is o.k. If you read a news story about a dog owner who killed his dog because it was difficult to take care of, wouldn't 100 different organizations be after that dog owner!?! Wouldn't the media push for loving homes to adopt these "difficult" pets? Wouldn't your heart bleed for that poor innocent dog.....? We're messed up. Autism is a spectrum, and that means there are highs, lows, and in-betweens. We need to feel the same about all the individuals in every spot on that spectrum, and at any age. In the news right now is a woman, Kelli Stapleton, who tried to murder her own 14 year old daughter with autism, and commit suicide at the same time.
She locked herself and and her daughter in a van with 2 charcoal grills turned on, and waited for the carbon monoxide to kill them both. This woman was a blog writer (of The Status Woe), advocating for her daughter, and documenting the struggles they went through. Just hours before she attempted to kill herself and her daughter, she wrote a post that, to me, seemed a little psychotic. If lack of funding and resources is this Mom's excuse than this quote from her last blog post will seem baffling, "We obtained the single opening for the Michigan children’s waiver for the whole state! So Issy has funds for staff at home. Her very own human for nearly all of her waking hours! Can. You. Imagine?! I found a staffing agency that has been following Issy’s story, wants to help her, and is thrilled to take the training". This seems like a victory, like a reason to feel hopeful, and not to take your life and the life of your own daughter. She goes on to tell of the problems they had with a school they were trying to send their daughter to, and how they struggle with their daughter and her violent outbursts. She talks about the "crazy" ideas her daughters' therapists give her like converting their garage so their daughter could live in it; independent, but watched over. Or perhaps to put her into foster care. These options were "crazy" to this mother! But murder/suicide? Oh, sure, that sounds good. There are countless (seriously, too many) stories of caregivers of people with autism who decide to take the life of a person who, in many cases, has no voice to fight for themselves. Anyway, I feel like I'm not making a point, and just rambling/venting more than anything.... All I want to say is that no-one deserves to have their life taken away from them-especially by their parent! Comments on the website for Autism Speaks, an advocacy agency, compared the mother to Hitler, who wanted to purge society of disability. Others said she should be tried on hate crimes charges for targeting someone with autism. “If you had autism, how’d you like your mother to decide that you shouldn’t live anymore?” one commenter wrote. It's a good point. If that Mother had a face to face conversation with her daughter, do you think her daughter would have agreed to her plan? Again....I'm not sure what I'm getting at. My heart breaks thinking about the children who have been killed because they were "too difficult" to care for. I am broken at the way media portrays these children as the cause for their own murders, and for their care givers being shown as victims of their own children. Don't buy the stories. If someone is being hurt, the person hurting them is NOT the victim, no matter what their story may be. If you meet someone who is raising/caring for someone with autism, don't go to, "ohhhh.....it must be so difficult", but don't do the "well, my kid does that too!" either. See each individual with autism as individuals! There are good and bad days, high and low functioning people, joys and sorrows. But, above all, each person with autism is a person, who has the right to live, just as you and I do. I want to look back at Caleb's school years... When Caleb was around 2, his therapists encouraged/forced me to send Caleb to pre-school. I was very resistant, but they assured me it was for his best. I brought him everyday he was to attend, and everyday they had to pry a screaming, kicking, flailing young boy out of my arms. He was not impressed with pre-school. His pre-school in Brantford was a dud. His teachers seemed more irritated by him than anything else, and they basically told me he would always be severely delayed and separate from the students his age. There was one woman there who did seem to see a light in his eyes though. She always seemed to be trying to encourage him, and would tell me what he had done well that day, instead of just telling me how delayed he was. When we moved to Bancroft and Caleb started a new pre-school, he still screamed when I dropped him off. In fact, he would scream and cry for at least 1/4 of a kilometre before we even got there! Poor lamb. I felt better leaving him there though, as I knew his teacher and helpers really seemed to enjoy having him around, even though he would have melt-downs and was a distraction to his classmates. They saw there was more going on in his wee head. They helped him learn his alphabet, to count and recognize numbers, and to identify shapes. When we lived in Arden, Caleb attended Land O' Lakes Public School. He got to ride the (big, regular) bus, which seemed to relieve a lot of his tension about going to school. The kid loved school buses! By God's grace, his bus driver was a wonderful woman in her 60's who's brother (at the time in his 50's) had autism. I walked Caleb to the bus, and explained to her Caleb's "isms", and that I was so sorry if he squealed too loud because he was excited about the bus, and that he may just be too loud in general! She was patient and kind, and didn't even mention about her brother until the Christmas break when we gave her a gift, and she had one for Caleb! A Bluebird school bus money-bank. I cried when Caleb ripped it open, and grabbed his crotch in delight at the fantastic bus he was holding. She knew how much he enjoyed riding the bus, and buses in general, and went out of her way to bless him. She honestly laid a foundation to school for Caleb. She was friendly, and understanding. She helped the bus ride to and from school be a relaxing one (as much as is possible!) Beyond the bus driver was Caleb's Kindergarten teacher who was such an amazing woman. Caleb never did manage to say her name right, but he loved her. And she genuinely loved Caleb. She was also key in finally getting him potty trained! Miracle!!! He still had melt-downs, he wasn't learning to read very well. He was behind in most things, and was an interference in the class, but she persisted, and loved him through it all! For a few years after we had left Arden she would still connect with me on Facebook to see how Caleb was doing. I'm not on FB anymore, so we've lost touch, but I know she would be bursting proud of her little Caleb and how far he's come! To give you an example of how much he loved her and his experience in Kindergarten, Caleb has recently been saying, "Caleb will go to college, then will go to Mountain Grove school (what he calls the Land O' Lakes school) and will be a kindergarten teacher". Amazing. In 2010 we lived in Roslin, and Caleb started attending the school he is still at, St. Carthagh Catholic School. He had a rough start there, not due in part to any one person, but for a poor group effort. He struggled a lot, and it felt like his longest school year ever. I actually blame most of that year on myself and my lack of gumption to get in there and make right the things I saw that were wrong. I talked with my oldest sister who had dealt with putting special needs kids through school, and armed with some strategies to fix the year, I arranged to see the principal to sort some things out. She teared up when I told her the kind of year I had been having with Caleb. She had no idea we were struggling so much, and promised to make it right. She did help us fix what was left of the year by way of opening a dialogue between us and the school, and we started to see improvements-if only by way of understanding what kind of day Caleb had. It helped us to know there was (for instance) a fire drill, and we could reason that the meltdown he was having the instant he got off the bus was a delayed reaction to a chaotic day at school. In grade 2 we were still in Roslin (for only another 2 months or so), but Caleb got to attend the same school two years in a row! Woot woot! We were excited to see him take root and really start to grow. I planned to stop into the class a few weeks into school, and talk to the kids about Caleb. I thought he would have a better chance of making friends if they knew who he was, and what autism was. His e.a. had him out of the class, and I went and chatted with a group of the sweetest grade two's I've ever met. I explained about autism, and how he seemed different, but how he was really the same. I said he had a blow-dryer brain, when everyone else had a toaster brain. I told the kids Caleb could make toast with his blow-dryer brain, it would just take longer. They all loved the idea of the brains as electronics. The best part of the visit was when I asked if anyone had any questions they needed answered about Caleb; about his sometimes strange behaviours, his crazy noises, why he has meltdowns, etc. Instead I got a lot of, "Um......did you know can sink a basketball in the highest net in the yard?". I did not know that. "Caleb's Mom, did you know that Caleb sings O Canada the best out of everyone every morning?". Didn't know that either. That beautiful class of kids had NO questions for me, only things they wanted to tell me about how wonderful he was. I knew this would be a turning year for him, and I was so glad he got to stay in the same school with a group of kids who had already gotten to know him, and loved him as he was. In grade 3 Caleb had the same teacher as grade 2, and that made me happy! Not only was she a wonderful teacher to Caleb, but I knew having her again would help Caleb progress because she knew him and what he was capable of. The other huge thing for Caleb this year was having the same E.A. So, that lucky boy got the same teacher and the same E.A. 2 years in a row! It was like an answered prayer I hadn't even uttered, the Lord just knew! That amazing E.A. wrote a post for me back in December, and it's worth a read. It demonstrates how much she cared for Caleb as a person, but also from a very educational point of view too. That year saw Caleb change and grow a lot, and it was due to the amazing staff at his school. I will admit openly that on this particular year I relaxed in my intense care and advocacy for Caleb at school. I felt so confident in him, and in the people I had entrusted him to, that I relaxed my special-needs-kid-death-grip on his school. It felt like I was able to breath for the first time when I sent him on the bus and watched him leave in the morning. Last year, in grade 4, Caleb got a new teacher, who was wonderful and really thought Caleb was fantastic. But in December his e.a. got offered a job working at the head office of the school board, and after the Christmas holiday Caleb came back to school to a new e.a. He knew his new e.a. from school already, which really helped the transition, but I think the situation really let him shine and demonstrate how much he had changed and grown in the last few years. In the past, he would have a good day at school, then get home and fall apart. Or, he would have a rotten day at school, then come home and be so sweet and wonderful. His adapting skills were so poor, and he internalized changes that bothered him, then let them explode in severe ways. The new year came, and with it a new e.a., and he took all the changes in stride, and had more consistent days where no matter what was happening, he would pull himself together, and keep moving. He finished the year off strong, and we were so proud of him and all he had accomplished. This year, Caleb has the e.a. he got last January, and we know she cares for him, and we know she wants him to succeed.
She challenges him, but we know that he is also becoming aware and accountable to himself. He wants to read more consistently, is using better words (though his manners are still sort of appalling!), and he loves math (yuk!). :) Caleb has two teachers this year who I think will be good for him. They seem to "get" him, and want to see him do his best. Last week we went to a meet-the-teacher/start of school year bbq. As soon as we got there Caleb vanished, and was swept away in a crowd of boys. The kids were talking with him (while he semi-ignored them. Caleb style.), sharing their DS and phones with him to play games, and goofing around with him while he shouted about his "crabby paddie!" (his g.f. cheeseburger I brought him). I started this post because I was looking through photos, and saw the one of Caleb in pre-school, and thought, "wow, what a wild ride!" I can't believe where Caleb has gotten in the 10 years of his life. When he was young we didn't want any more kids because he was too much to handle and we didn't think we could possibly manage it. I would cry a lot beside his crib while he slept, wondering why God would burden me with this little boy who was so difficult every minute of the day. His early years were more pain and heartache than success, and sometimes it felt like one step forward, then being shoved back 10 steps. The key though is to get back up, dust yourself off, and keep moving forward. Raising a child with special needs, and navigating the school years and the school system can be frightening-forget that, it IS frightening! Fight for your child, pray for your child, and get the best for your child! If something within the school is not sitting right with you, get it sorted! It's your kid, and you can voice your concerns! But also, try to see that usually (though not always), the school will have at least one teacher, e.a. or a principal who truly and deeply wishes for your child to succeed. Find that faculty member, and make an ally! We have seen hard years for Caleb at school, but we have also seen a school that loves Caleb, and has gotten to know him-sometimes we feel they know him better than we do! We were joking recently that if my husband and I died, we are going to leave Caleb in the care of his school. I feel like I've been writing about school a lot...maybe I have, maybe I haven't. But, I want to sing the praises of his school! I know this new school year has only just started, but I have so much faith in the people working at St. Carthagh's that I feel so blessed. Caleb had a "incident" last week that my husband and I were confused about. When we talked with the principal about it, it brought my husband to tears to realize how well the school knows Caleb, and how much they advocate for him-even amongst themselves! So, this is a random, start of the new school year thank-you to Caleb's school! To the staff who love him, and to the kids who accept him. I would love to say that my husband and I, and Caleb's siblings have crafted him into this fabulous (and seriously goofy) kid he is today, but I would be a liar (pants on fire). What a blessing you have all been in our lives. We love you and pray for you daily that God will continue to use you in Caleb's life. It also prompts us to pray for special needs kids and their parents who need a boost; for families who don't have a wonderful school to rely on, or teachers or e.a's or a principal who truly care. To Caleb's school-you are wonderful-every one of you!!! Thank-You!!!! xo I have said it before that I like to read articles, books, and watch movies or documentaries about autism to learn more about it. Another thing I love to do is read other parents blogs about their lives raising kids with autism. Some are really sad, some are really funny, but all of them are honest. Which I need. What's the point of writing a blog about autism and pretending it's all achievements and amazing savant skills when it's not! Anyway, that being said, today I wanted to share a blog called "Yeah. Good Times", and a excerpt from a series she hosted called: "All Kids Do That". There are times as a parent of a child with autism that I want to know if all kids do something, or if it's just autism. But even in those situations that might be an "all kids" sort of event, there is a twinge of something different. For instance, Caleb has been a little more obnoxious than usual. I inquired about it, and I guess between the ages of 8-12 boys can start to push the boundaries more, and act like they know everything. The difference with Caleb though, compared to other boys his age, if you can talk about something, and prove where they are wrong, they will back off. A typical boy will take the facts, process them, and may not bring up that subject again. Caleb can be told the facts, but still push and push, and argue about something until you want to rip your hair out. For instance, last night we're reading a book he brought home from school, and it's all about pumpkins. At one point the book said something about a pumpkin being a fruit, and Caleb interrupts me to say, "Uhhh......pumpkin is a vegetable". I said, "no, look here (as I point in the book), it says it's a fruit because it grows from a flower". He interrupts me to say, "a pumpkin in a vegetable". "Nope", I tell him. He thinks about it and says, "a pumpkin is LIKE a vegetable". I roll my eyes because I know this means he will forever say how a pumpkin in LIKE a vegetable, and if you tell him, "yeah, but it's still a fruit", he will reply with, "but it's LIKE a vegetable!". It won't end. It. Won't. End. Anyway, back to this other blog, I am sharing one post from a series of 20 about "all kids do that". You can find all the posts here, and I would check it out if I were you. The guests that write each post are informative, funny, but mostly, they are honest-the best thing. They help to bring faces to autism (there are so many faces to it), and bringing a face to autism creates understanding and empathy. So, read on, share on, and learn on! "All Kids Do That" From: Yeah, Good Times This is a guest post written by Bobbi Sheahan, the co-author of a book, "What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011) Things That Take Years Off the End of Mom’s Life You know that getting-to-know-you chat when moms meet each other and begin to exchange basic information about our kids? It’s a little different when your child has autism. There's always a How-Much-To-Say dilemma: usually I am content to come off as Crazy Helicopter Mom until my child does something that frightens Our New Friends. Fortunately or unfortunately, that never takes long, and then there’s A Situation. If the word "autism" hasn't come up yet, it does at that point. I'll acknowledge that my child doesn’t have the caution that other kids have, or that she’s done some objectively zany things, or that she's a risk-taker, to a greater degree than the norm, and that's when the fun starts. The responses seem to fall into one of two categories: either our New Friend will run screaming into the night and I'll never see her again, or – surprisingly frequently – she’ll dismiss it with some version of All Kids Do That. Example: My kid puts things in her mouth that aren’t food. Response: All Kids Do That. Light bulbs? Really? All kids eat light bulbs? How about thumbtacks? Sticks? Mulch? How about mulch? And mulch consumption before age 3 doesn’t count. Or: My kid used to like to run away. Response: Yeah, All Kids Do That. For six and a half years? Without stopping? Or: My kid took a while to potty train. Forget the Q&A; just hold me while I weep. Maybe someday Jill will have me back to write an article called Potty Train Your Child in Ten Years or Less. Wait, we’re in danger of getting off topic. Let's get move on to dangers with electricity. Or: My child doesn’t exercise caution around electrical appliances. Response: Yeah, All Kids Do That. No, really. She’s not a toddler anymore, and she has conquered a half-dozen floor lamps, tried innumerable times to toast her hands (yes, Toast. Her. Hands.), and once she grabbed a hot light bulb and burned the skin off her hand. Not the same light bulb that she bit into – this was a different light bulb, on a different day. But thanks for asking. Would you like some toast? You get the picture. Our kids’ senses are often calibrated completely differently than the rest of the world’s senses. That can be maddening to your child – say, if he has very acute hearing or smell – but it can also be dangerous. Sensory issues can mess with your perception of pain, for example. My Sweet Baboo used to stand on anthills and watch the fire ants march up and down her legs, biting as they went. Now, let’s be honest; before I had a kid with autism, I would have seen those welts on the child's legs and thought, “Dear God, what is wrong with that mother? How could she let that happen?” Well, I'll tell you. I successfully dragged her off of about 386 anthills that spring, and I missed a couple. Then again, the next kid with autism might have just the opposite reaction, and might be tearing at his skin after it’s been brushed against a leaf; I’ve heard mothers tell me about how their kids basically scratched their skin off, too, for no apparent reason. My child has attempted to take the skin off of her arms with a potato peeler, but I have managed to stop her. About eighty times. So, please, please don’t tell me All Kids Do That. Or stand back if you do. I might just have to come after you with a potato peeler and some fire ants. Well, I hope you enjoyed this post today!
A few days ago we had an encounter with someone who hasn't seen Caleb in about 2 years.
Caleb ran outside to greet this person, went on some semi-understandable rant about the visitors truck, threw a hummingbird mention in there because he loves them right now, and then hung around while my husband got ready to go with this friend. A few hours later after my husband came back, he told me how his friend couldn't believe how far Caleb had come. All of the things he had done (greeting, talking, waiting around) were new things from the last few years. We are with Caleb everyday, and sometimes can't see the forest for the trees. We've been plugging away with Caleb for so long, and although we knew he had made improvements, it was such an encouragement to have someone come in and just see the "forest"; the cumulative change that our autistic son has made. So, this post is brief, but is meant as an encouragement pass-on. As a parent, we tend to see things too close up. A fussy baby or a sulky teenager is maybe your daily experience-for now. We need to step back and see the whole picture. We need to take each day in stride, as well as see the big picture. Sometimes when I'm painting a new picture, I can get fixated on a certain spot, and start to dislike the work I'm doing. So, I'll set the painting aside for a time. Then, one day I'll walk into the room where the painting is, and think, "oh wow, I think I like this". You can't put your children or a season you're in your life aside because you don't like them or the situation (obviously...), but we can try to separate ourselves from the moment, and see what we're making, and what we're making beautiful, and who we're becoming in the midst of it all. Because it's hard for the person in that situation to see the big picture, we need to encourage them. In the same way that I knew Caleb has been making so many improvements, it was such a boost to hear someone else (especially someone who hadn't seen him in so long) say that they saw so much positive change. Give a boost today, be an encourager, and let's help each other see the forest for the trees. xo |
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! Want to Stay Connected?
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