The novel, "The Curious Incident of The Dog in the Night-Time", by Mark Haddon, explores the life of one particular young man, Christopher, who is on the autism spectrum. (Read a review of the book here). Although Christopher does demonstrate some genius, I like that the book (& the award winning play) also show 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.
Some of you may recall that back in December, we got a cat.
The scary truth is that we live in the country, in an old house, and we were having mouse and rat problems (yes, rats! Huge rats!!!). We'd been doing everything we could think of to rid ourselves of our unwanted house guests, but they are persistent little buggers, and I figured a cat could a least help a little, right?
Well, so far she doesn't seem to have caught anything...and we've even caught a rat in a trap since getting her, but that's beside the point because something else has happened. This little cat has stolen my son's heart away! I was going to say, "this little cat has trapped my son's heart", but that's too much cheesiness for anyone! Haha, I still shared it anyway!
My son Caleb has autism. Autism is a mental condition, generally present from early childhood, and is marked by difficulty in the areas of communicating, connecting to other people, using language, and abstract concepts. and engaging in repetitive, often unusual behaviours.
Caleb is 11, and still has trouble with communication. He talks, has many words, and can sometimes carry on something of a conversation (though usually it has to be about the subject of his choosing, and even then, the response you get may not be an appropriate response, it may just be some random echo from something else he knows). His language skills are good and bad. For instance, he will say when he's irritated with you, "you're creeping me angry", which of course makes no sense, but we're sort of used to it around here! And abstract concepts (like figures of speech) are still a struggle for him, especially when using simile, hyperbole, metaphors, & irony. Whenever I say something is like something else, for instance, "Your sister is like a cat!" he will quickly respond with, "Abby is not a cat, Abby will be a little girl?!?"
Caleb's relationships are different. He clearly has a desire to have friends. This is evident in that he will often keep hanging around certain students at school, whether they are being nice to him or not, or by him asking "where are the girls" when he realizes his sisters aren't in the house for whatever reason, and he is always clearly excited when we tell him we are going to certain peoples homes to visit.
But now we've got this cat. Bella.
Bella has scratched Caleb's face. He still loves her. Bella runs away from him. He still loves her. She hides from him in the drawers of his captains bed. He thinks that's the best, actually.
But, she is more often painfully patient with him. She will sit with him for long periods of time, letting him whisper in her ears, and tickle her back.
I didn't realize the power she had over him, or how much he thought of her, until one day when he was having a "meltdown" and was just so upset. Our usual practice now for Caleb when he is getting frustrated and angry is to send him to his room to let the feelings play out in a location where he feels safe, and won't be looked at or bothered by his sisters.
I can't remember what he was so upset about on this one particular day, but he just couldn't get a hold of himself after having been in his room for quite some time. So, I went to him and asked if he wanted to lay down in my bed (which he loves and thinks of as a special thing). He got into my bed, and started really crying. Through his tears he choked out "Caleb will need Bella the cat?". So I asked him to clarify, "you want Bella right now?". "Yes. Caleb will need Bella the cat" he answered.
I found the cat and brought her to him, and he took her in his arms, put her up to his face, and started sobbing! It was heartbreaking and beautiful all at once. He sat in my bed crying into the side of the cat, and then talking to her and saying, "Caleb will be so very upset", "Caleb will not like to feel so red (angry)". And then, after about 15 minutes, he got up (still holding the cat) and came back downstairs, happy and ready to go on with his day.
I was left thinking, "what just happened?"
Therapy cats, it turns out, although it sounds like a strange notion, are an actual thing!
After this incident with Caleb and Bella, I Googled "autism and therapy cats" and learned that this odd idea, is something that has been going on for a while!
I feel like most people know of therapy dogs, but there are also therapy horses, and even therapy dolphins!
When most people think of cats though, they generally think of aloof kind of creatures who are self-centred. And, well, that is true for a lot of cats, but not for all cats! That's the same as saying all dogs are loyal and loving, or all horses are the same (the saying "a horse is a horse!").
Our cat proved early on that she was very, very, very cuddly and social. Not so much to the children at first....because the girls mostly chased her around and held her up by her armpits to make her "walk" on her hind legs. Sheesh.
Caleb however wasn't ever interested in "playing" with her, he just wanted to hold her, press his face into her, whisper in her ear, and give her "tickle backs" (yes, he tickles the cats back)!
Just a month ago, we had been away for almost the whole day, and came home quite late. As soon as we walked in the door Bella was there, meowing a greeting. Caleb, (who when asked about how his day was at school says "good"), walked in and said, "Bella! I missed you! I will be in Bancroft all day to visit our friends!".
My husband and I were literally stunned! I turned to my husband and said, "I wish he would talk to us like that about his day!"
I knew our cat had moved in to be more than a rodent catcher.
Caleb is very protective and possessive of the cat. If his sisters are being too silly with her, he will shout, "HEY! You will not be mean to my friend Bella the cat!!!", or if she's outside and he doesn't know that, he will walk around saying (in a hilariously fake/copy-cat way), "Heeeeeere Bella, Bella, Bella! Heeeeeeere Bella the cat!".
As for Bella's thoughts on her new job, well, she lets him know when she's had enough! He's been scratched, and she runs away from him. But these things seem to be happening less and less often. I'm not going to get all cat-spiritual on you, but I will say that I think she's getting used to Caleb and understanding him better. I also think she's realizing that he isn't home all day and her excessive deep-pressure cuddling is only for a small amount of time every day so she's being more chill about it!!!
Recently, Caleb was sick and home from school. When I told him he'd need to stay in bed to rest, his first question was, "Bella the cat will stay with Caleb?".
So, in between running to the bathroom to be sick, or being sick in the Spiderman bucket provided, he would be holding the cat. I wondered at one point in the day, "how does he keep getting the cat when he's only getting up to be sick?".
Well, maybe an hour after wondering that, I went back up to Caleb's room to see how he was doing. He had fallen asleep, but at the end of his bed sat Bella. All on her own accord. She could have been in 10 different places of her choosing having been released from Caleb's grip on her, but she was still there with him.
Again....not gonna get cat-spiritual, but it was really an amazing thing.
Caleb often says of Bella, "Bella will be my friend", "Bella is Caleb's best friend" or "Bella will love Caleb", and I think he's right.
What seemed to be a really lop-sided relationship is starting to turn into something a little more mutual.
Bella is not trained to be a therapy cat, but Caleb doesn't seem to mind. Neither do we, for that matter!
How are we trying to harness the power of the cat for Caleb? Well, she helps my sleepy and grumpy pre-teen lad out of bed in the morning! I'll go in to wake him up with the cat in my arms, and he opens his eyes and smiles and says, "Good morning Bella the cat" (I'm invisible, btw!), and he gets 5 minutes to cuddle before he needs to get up and get ready for the day. Or when he's having a hard time with something and is edging on a meltdown, I'll tell him to go to his room to have alone time, and I'll bring him the cat. This has helped enormously as he used to become so severely upset that his whole face would be blood-shot (it looked like his face was covered in deep purple freckles), but he now cries and holds Bella until he's feeling better.
He is learning that to be a good friend to Bella he can't hold her with a death grip, and that he needs to see and understand what his friend is telling him with her tail, ears, and voice (ya'll know what an angry cat looks and sounds like!).
His favourite "joke" right now is, "Bella the cat will look like a funny lemur!", which is kind of true.
I am surprised by this friendship though. We've had a dog and horses for years, and although Caleb really loves them, he never seemed so focused on them, and they never seemed to "stick" as therapy animals.
So, in the regular cat-fashion of doing things their way, our cat does whatever she wants and reaches out and befriends someone who struggles with making real friends. Maybe it just figures, since cats have a lot of autistic tendencies; sensitive hearing, single-mindedness, particular eating habits, aversion to water, and running away when someone reaches out to touch them! Perhaps there is an understanding there! : )
I think for Caleb, spending time with Bella can be a break from dealing with humans who can be confusing with social cues, or who can tease and hurt feelings (which are so abstract and hard to understand, but still felt). And in recent years Caleb has actually become more and more cuddly himself, to the point where I'm standing working at the hot stove, and Caleb comes up behind me for some hugging time, and I'm like, "Uh....not right now, pal!". This sweet cat is giving him so much cuddle time, and, praise the Lord, it keeps Caleb from being right at my heels while I'm working in my small kitchen!
Whatever the reasons, whatever the connections, whatever is going on between Caleb and Bella....we are so grateful for her. We found her in an ad on Kijiji. She was free! But she is invaluable, especially to Caleb.
So, I'm not saying if you're struggling with a child with autism, rush out and get yourself a cat. But I am saying, why not consider it? If you know someone with a cat, see if you can go over for a little visit and cat-time! Or take your child to an animal shelter and see what kind of reaction you get out of showing them the cats!
Our Bella....loud & vocal (I'm talking meowing with all her might every morning at 5am!!!), crazy cuddly, so pretty, so sweet. She is Caleb's best friend, and we are so glad for our four legged, furry cat therapist!
Oh, and P.S. read HERE for a beautiful story about a little girl with autism and her feline friend!
Ever feel like you're working so hard at something, you're really focused, driven, and determined?
I once felt like that about autism and being an advocate for my now 11 year old son, Caleb.
But somewhere along the way I lost traction.....I lost sight of what I was doing with him. It happened by accident because he had a period of time in his life a few years ago where he was doing so well. He was excelling in so much, and I relaxed and took my eyes off the target.
In these last few months though, Caleb has suddenly become a different young man. I point to pre-puberty as the main cause, but whatever it is, I quickly saw that I had fallen asleep behind the wheel and was about to crash. Caleb was suddenly being difficult, he wasn't doing so great at school, he had hit a plateau. and I had unknowingly let him get there.
When Caleb was young, I had him connected to therapists, social workers, & play groups. We had special toys and books for him, and decided to put him on a gluten-free and dairy-free diet. We fought for him everywhere he went--church, school, the mall, the grocery store! We were autism advocates on a mission! The mission was to create awareness, promote inclusion, and to set up a solid foundation for Caleb that would help him grow into a mature, responsible and contributing member of society.
These days I feel lost.
These days I feel him slipping from my grasp. I see him getting lost inside his head, zoning out, then acting out.
I find myself angry and frustrated with him daily. Daily! I know it sounds terrible to be upset with a special needs child, but gosh-darnit he's stubborn, and struggling, and challenging!
And I wish I could pinpoint the moment I let my focus go, because I would go back there, slap myself upside the head and say, "you CAN"T loose focus! He needs you! You are his advocate, his support, his Mother!"
Last week we had a meeting at his school. It came about because everyone involved in his life there was concerned about the new (and troubling) behaviours he was exhibiting.
Sitting in that meeting though, and hearing all those people who care for Caleb, and genuinely want the best for him, talk about their concerns, as well as their hopes for Caleb's future made me realize something; all is not lost.
Where I was feeling alone in my hopelessness of the direction Caleb was heading in, I realized there were many other people who saw this path he was taking, and wanted to stop him, and set him right. Where I was stuck, and had no clue what to do with him, his amazing team hashed out ideas, and came up with a list of a few new things we could try to help Caleb in this strange new place in his life.
I left feeling so encouraged, but more importantly, more focused than I've been in a long time. Focused on Caleb and what he needs, & what will set him up for success.
Caleb is changing, and that is a little scary! But he's here, he's mine to nurture, to lead and guide. It's hard. I cry a lot. I fret and worry. But Caleb is worth it!
April is autism awareness month.
I want to share this month about my Caleb, about his autism, and about his struggles and successes.
I hope you'll join me, support me, and support the efforts of autism awareness this month. You can show support by changing your Facebook profile picture to an autism badge, ribbon, or even Caleb's face if you want (just save and use any of the photos above!)! You can purchase shirts, pins, hats, all sorts of things. You can donate your time or money to a local autism support branch (even the smallest towns often have them!), or you could show support by asking a family you may know who is dealing with autism if there is something, anything, you can do to help them. And if the family says there isn't anything, it's because they are probably feeling overwhelmed and don't even know where to start asking for help! So, in that case, bring them a gift card for a coffee shop!!!
I want to use this month to really help get my focus back. To "talk" my problems and thoughts out loud, which more often than not lead me to revelation about my circumstance!
Please join me this month! I'll be writing at least every Thursday and would love to hear from you!
It's Thursday! I used to post about autism each and every Thursday, but now, I post what I can, when I can, and when I feel I have someone worthwhile to share!
So, today, I have Caleb for you, up close and personal, with an interview!
In May 2014 I interviewed Caleb to try to show him for who he is, autism & all!
His answers were brilliant and hilarious! He said Tater Tots taste like factory, and mustard tastes like sunshine! : )
He has grown and changed a lot (a lot!!!) in the year & a half since then! He doesn't think in colours quite like he used to, but he has improved verbally by leaps and bounds, and has really started to understand how to control how he reacts to situations (he still can get very, very upset, but much less frequently than he used to), and he is learning to communicate better at school verbally and through writing (we refer to his school journal in the interview).
I hope you take the 3 1/2 minutes to watch the interview, you'll love it! Caleb is a goon! He is really so sweet and funny, and I love how hard he works to be the best he can be!
I hope you enjoyed the video! Please comment (here or on YouTube) if you watched it! Share our own stories of people in your life with autism! Spreading facts and data is important for people to understand with their minds what autism is, but getting to know the people with autism, well, that will change peoples' hearts.
I haven't written a post about my Caleb and autism in a very long time. Oh, it's not that things are all hunky-dory around here, but the truth is, autism is our life, and sometimes finding something to write about can feel like finding a needle in a haystack! It's like trying to write a post about my brown hair....I live with it everyday, it's normal to me, what's there to talk about? I would rather focus on quality, not quantity when it comes to what I write about autism.
But I was struck by something this past weekend about our lives and our journey through Autism-Land: I'm getting a thicker skin.
Where once I was all momma-bear on anyone who even looked at us slightly irritated because of the noise from Caleb, or his wild arm flapping and crotch grabbing, I now go, "meh". My role as his advocate is changing all the time, and my need to disclose his diagnosis is getting smaller as he gets older, and I'm also taking it less personally when people seem bothered by him.
Caleb is beautifully and wonderfully made, and if his "isms" bother people, well, they can go suck a lemon (excuse my French). :)
I was at Tim Horton's (a coffee shop) with Caleb, and was meeting a woman who had knit me some mittens. She is a sweet and patient woman who was kind and polite to Caleb, despite him being pretty loud and interrupting us a lot (I don't think that's an o.k. thing, btw, and we're working on that with him), but at one point I happened to look to the table next to us, and they were just dead-faced staring at what they apparently thought was the one child circus show! Caleb was sitting on my lap due to a lack of seats, and he is a pretty big kid, and he was being loud and shouting about his new favourite thing, public bathrooms (yuk!), but he was really being sweet. He was clearly happy and enjoying himself, and in a good mood, and I was too! So, I blocked our coffee shop table neighbours out, and enjoyed my time out with Caleb!
When we were getting up to leave Caleb walked between 2 tables to stand at the large window that looked at the business next store to the coffee shop, Reid's Dairy, another place Caleb loves! So, he's standing at this window, looking out and says (very loudly, and while bouncing up and down a little and grabbing his crotch), "Look, here is Reid's Dairy!!! Reid's Dairy will have a public bathroom and it has a toilet that will flush very funny!!!" and the people at the tables he had to walk through looked as though they felt their entire day was ruined by this terrible child! Those people had really perfected their rude stare!
To me it's apparent that Caleb has something different about him. Maybe people don't know about autism at all, and I realize Caleb looks pretty "normal", but I'm really over feeling crushed about people giving Caleb the stink-eye. This world is full of amazingly different people! Are we to stop and stare rudely at each person we deem "strange"? We'd likely all be standing for all of time staring at someone....
Does this mean I don't care anymore? That couldn't be farther from the truth! If someone said something hurtful out loud to Caleb I would speak up and defend him, but the hurtful gawkers I leave alone. Caleb is always so happy and focused on whatever it is he's being so loud about that I don't think he even notices the looks he gets.
The trick is to have a thick skin, but a soft heart when raising a child with autism. If I let myself feel hurt every time someone seemed to not approve of Caleb I would be a mess! I could waste my time by constantly being upset by other people, people who, in the grander scheme of Caleb's life, don't matter.
The people who matter and who know him treat him with kindness (well....except his sisters sometimes....), and he is very loved.
I still need to be an advocate for autism and for Caleb, but I am seeing where it matters more clearly as I get a thicker skin and as he gets older and more independent. I am trying to remember that people can be rude and hurtful, and stare at someone they think is annoying, strange, or different. But Caleb will always seem annoying or strange or different to someone, and that's ok! I won't always be with him to stand up to every person who never got told "it's rude to stare", and that's ok. He will be ok!
I like to think of my thicker skin (and softer heart) as a chance to model proper behaviour towards people with special needs. I don't lash out (which is really just ignorance met with ignorance), or say something rude to the rude person (because that makes no sense either!), I just carry on, and that's what I want people around us to do too. In a situation when people are staring though, I find that for every 5 people with the rude stare, there is 1 person who is smiling warmly at me, in a knowing way. In a way that says, "I get it", and that helps me have an even softer heart. Be one of those people!!!
Having a thick skin is vital in raising a child with special needs, but remembering to keep your heart soft is essential too. You need to remember that love for your child and even for those people who don't understand your child, is what will change the way people see special needs. I do still feel hurt and get angry on occasion because of how other people (openly) view my son, and that's ok, I am human! But my aim is to show the world that autism (....although often very, very loud!) is very different, and that different is very beautiful.
You can find Autism, Disclosure & Advocacy: Part I here, and Part II here
My husband and I are going on a trip!
We leave tomorrow to bring the kids to Brantford, and then we're heading off to Europe with my in-laws, and my husbands grandpa. We'll spend a week in Belgium (where my husbands' family is from), then travel south and have a few days in France, then turn around and go north towards Breda (where my Dad is from), and along the Western coast of the Netherlands making many stops along the way, and ending in Amsterdam for a few days. It'll be a 2 week trip total, which is some ways doesn't seem like it will be long enough, but in other ways, it'll be plenty long!
I sat crying with my girls last night, asking them to take good care of their brother who has autism. Caleb has grown, and matured, and developed in so many ways in the last few years. On one hand I feel confident he will be perfectly fine without us....and then on the other hand, he's always had my husband and I to bring him back from the brink; to understand him when no-one else does, to just know what he needs to calm down and restart. I can't write enough notes about "how to deal with Caleb while we're away" to feel like I've covered all my bases because, unfortunately, autism isn't just a simple game of baseball. It might feel like it for a time, then suddenly, just when you're getting the hang of it, it's a new game all together!
I am anxious about leaving the girls too; they are sweet and sassy, and have their quirks. They are both sensitive (whether or not they always show it), and feel deeply the things that are going on around them (well, sometimes Keziah is oblivious, but once she realizes something is going on, she's attentive and caring!). They are wonderful little dears, and I gave them a big job while talking with them last night: be your brother's helper!
They get him, they are "good" with him, but they are also just kids. And siblings on top of being kids, so they egg Caleb on at times, feel hurt and confused by his actions and reactions, and don't know how to see which direction he's heading emotionally, and how to help him out. They've seen Adam and I doing it a million times, but that doesn't mean they know how to do it. That's part of what worries me in going away.
We've spent the last 11 years getting to know Caleb; we weren't given a manual, just each day hitting us, and we're left making mental notes, using a lot of trial and error, and making our lives as a family as safe as possible. So, even though he's going to be staying with family who loves him, and wants the best for him, it doesn't mean he'll be understood, or treated properly (he'll be treated very well, but that's different than being treated 'properly'). He is equal parts regular 11 year old boy (cheeky, obnoxious, loves rude humour), and autism mystery (rambling phrases from movies, crotch grabbing, mind blindness). I'll say to myself, "he'll really be fine!"...and then in the next thought go, "...but what if he isn't?" Because that is what a lot of our days look like: he's fine, fine, fine, fine, fine.....ka-boom (not fine, fyi)!!.....fine, fine, fine...You get it. With Adam and I, we know how to read him (mostly), and how to help him use his words, make "blue" (good) choices instead of "red" (bad) choices. and how to be a bucket-filler (doing things that help others feel good and happy). So, that job is now on his 5 and 6 year old sisters shoulders....geepers.
The other thing about leaving that worries me (and breaks my heart) is wondering when Caleb will realize we're really gone. We've told him we're going away, but he is (currently) so focused on going to visit family in Brantford, I don't think he's really cares or understands!
I am really happy he loves his family so much that he is looking forward to visiting, but put yourself into his mind for a moment: we've been visiting family before when Adam and I will go out for an evening, then we are always back in the morning. So on this trip, when does Caleb wake up and say, "where the heck are my Mom and Dad?" and will he find the words to ask that out loud, or will he slowly and secretly get more worried and confused by our absence? We'll be calling the kids while we're away obviously, but will it click? I'm not sure. I'm just not sure.
This particular post has no real purpose except to give me a chance to get my thoughts and worries out...I don't have any real tips or tricks because this is new to me!!! I've only been away from Caleb overnight maybe two or three times in his life (that I can remember-excluding sleep-overs at the cousins when I am still 'technically' around). And every time I returned, he would say, "Mom! You back!" (yes, "you", not "you're"). He always said it like he was genuinely surprised I came back, as though he thought that was it; I'd packed up and left.
We have many military families in our church, and I'm thinking about one idea a friend used for her kids when her husband was away: she had a jar full of...uh, something, I can't remember! Haha, anyway, a jar, and in it was the number of days their Dad would be away, in item form. So, I could use a jar with candies (for instance), and each day the kids could take a candy out to visually see the jar getting emptier, and our arrival getting closer. Caleb may understand this visual, or he may just want to eat the candy!...maybe I should use a non-food item...whomp whomp, anyway...a calendar could do a similar job; marking off the days with an "x" until we get home.
I also thought that using a map to help Caleb (and the girls too) see exactly where we are could be helpful. Maybe every time we call, they can put a sticker onto the spot we're calling from.
One last idea is to have a family photo for the kids to keep. I feel like if they see a photo of us together, it will reaffirm the fact that we are a family, and we are coming back.
My heart goes back and forth between being excited about the trip, to sick thinking about leaving the kids.....bleh.
Beyond all my fears, I guess, is the hope that this experience will be a good one for Caleb and the girls. That they can learn to rely on each other more, to understand each other more, and for them to practice a level of independence that cannot be offered when they are always with Adam and I.
It will good, that's what I am telling myself. Everything will be fine, the kids will have a great time, Adam and I will have a great time, and this will be good! This will be good...
My Caleb has accomplished a lot in his 11 years of life.
The things he's accomplished maybe aren't super impressive from a "normal" point of view, but when you're raising someone with autism, you start to see "success" as a very different thing than you ever thought it could be!
Caleb has successfully figured out how to be a complete pain-in-the-butt to his younger sisters! Why is this an accomplishment? Because he didn't always bother with them at all. He was happy in his own world, in his zone, and the only minding he did of his sisters' was if they took something from him, or insisted on making some sort of terrible noise that really upset him. Now, I'll send them out to play, and he'll pull down the tree branches they're climbing on (dangerous, I know, but also amusing!), he plays tricks like taking all the money out of one girls' piggy bank, and putting it into the other girls' piggy bank, then watches them fight and accuse each other of stealing (that one reminds me of something one of my brothers would have done!), and he loves to sit on them. If they're on the couch, in bed, in the van, he'll just sit on them and smile.
He's also figured out that he can protect them too though; if one of the girls' is getting in trouble, he'll often step in and say (something monotoned like) "you will not be mean to Abigail (or Keziah)?". Yes, it is phrased like a question. Or, if one of the girls is hurt, he'll say (monotoned again), "oh no, are you o.k?" He doesn't always really care, but he has figured out that he is a part of their world, and has a "job" as an older brother. That's a huge leap from when they were babies, and they didn't exist at all (unless they were crying and he'd cover his ears).
Caleb has also in the last few years expanded his eating horizons enormously! Where he once only ate apples, romaine lettuce, Nutella spread, and gluten-free bread (well, and any candy he could get his hands on!), he now eats pretty much any meat I've made-chicken, on or off the bone, hamburger and steak, even fish! And the kid loves bacon! He eats carrots, cucumber, celery, still loves romaine lettuce; he'll eat all berries, pineapple, bananas (this one is only recent to the last few months), potatoes and corn. Does this seem like an "accomplishment" worth mentioning? It is to a parent who wants to give her children, and especially her special needs child, the best food to fuel any and every achievement he sets his mind to! It makes going out easier, it makes sending him to school easier, and a smidge of my mommy-guilt fades when I know he's eating a balanced diet! Mommy-guilt? What? Let's move on... :)
Recently though, Caleb pulled something off that we were never sure he'd manage. Riding a 2-wheeler bike! He's always been not so great at 'driving'; as a young lad he had a battery powered "tractor" he could sit and drive in (pictured above)....and he would just crash into everything (if there was a picture from 2 seconds later, you'd see him crashing!)! He had no sense of his own body and his control over the vehicle. This translated into bike riding, and he'd often steer right off the road and crash into the ditch! In the photo below you can see his Grampie holding the handle bars, while Caleb stares off into space! Not exactly the best way to ride a bike!!!
So, needless to say, taking training wheels off didn't seem like an option!
A few years ago however, our (detached) garage caught fire. We lost everything in it, including Caleb's bike with training wheels. When we went to replace the bike, we got him one that was a better size for him, but also forgot to grab him some training wheels to attach to it. We got it home and thought, "well, we could try to get him riding a 2-wheeler...?" So, we worked at it, and worked at it, and worked at it...then thought, "well, maybe we do just need to get him some training wheels?" That was a defeating thought for my husband, who wants his son to be able to do some 'regular' boy things, including riding a 2-wheeler. So, my husband persisted, stayed patient (long after I could manage!), and finally, one day he sent me a text; a video of Caleb finally riding his bike on his own! I wasn't at home at the time, but I stopped what I was doing and announced to everyone I was with, "Caleb learned to ride his bike!!!" and then I cried!
The video is crappy (from a cell phone), but I love it! I love that Caleb has this new skill, a new freedom. I love his reaction at the end to my husband asking "who's the best bike-rider in the world?!?". Celeb says, "me??". "Yeah, it's you", Adam replies. Caleb's reaction-"wow!" :)
Take nothing for granted when raising a child with special needs. Enjoy each accomplishment, no matter how big or small!
Have a great Thursday!
Today is the last day of April, and the last day of Autism Awareness Month.
I didn't post this month as much as I would have wanted to, but all that does is remind me that creating autism awareness doesn't (and can't, and shouldn't) only happen once a month.
Last year I created a video of Caleb in order to give a better understanding of autism in general. This year I wanted to do something different, and make a video that was just of Caleb from this last year.
I wanted to give a bigger picture of him as a young man who is living daily with his "Adventures in Autism" (as I often call it!).
This video doesn't show our daily struggles, or Caleb's meltdowns. It doesn't talk about the sensory issues a child with autism has, the special diet, or the communication barriers we fight through.
This is a video of how beautiful, sweet, and amazing Caleb is. It's a year of photos (and some videos) that lets you get to know Caleb as he learns and grows and makes my life (and the lives of many people around him) much, much better!
Caleb choose the song for this video, it's by Imagine Dragons, and it's called, "On Top Of The World".
I hope you take the 4 minutes to watch this, and to let Caleb and his brilliant smile make your day a little better. :)
Autism awareness is about getting to know the people with autism. Yes, it's also about knowing the struggles they deal with, but the "symptoms" are listed and can be found in many people with autism. If you want to really know about autism, let yourself get to know someone with it. It will change your life. Caleb has changed mine.
Looking back on the last 10 years of raising Caleb, that sweet and sassy boy of mine who has autism, I realize there are things my current self would tell my former self. I'm going to share this 'conversation' with you.
First, I would tell myself that getting a proper, thorough diagnosis can take a long (long, long!) time!
We had a doctor who seemed afraid to tell us Caleb had autism, in fact he told us he seemed "fine", and was just a little quirky. Caleb didn't speak a word at this appointment, he didn't make a sound. He was 19 months old and sat for the entire appointment turning a toy set of gears that had spirals painted on them. Quirky? Sure. But we knew there was more there.
It wasn't until Caleb was 5 that we got a proper diagnosis.
I would also tell myself regarding the diagnosis to not be afraid of it.
During the waiting game, in the times Caleb went to his therapies, when I got asked 100000 questions from Doctors and specialists about what he could and couldn't do, and spending time at home with a beautiful young boy who seemed to care less if I played with him or didn't. It was all like an angry rain cloud, following us, building up and getting darker.
I wish someone would have said, "you don't need to be worried or afraid. Whatever the results, you will be alright".
I would also tell myself that it is ok to be angry.
I felt such shame and loneliness in the anger I had towards autism. I wasn't mad at Caleb, more at people who brought us down, therapists who didn't seem to care, with daily life, and angry with myself.
I thought maybe I had 'given' him his autism (the original thoughts on the cause of autism was that the child was reacting to a 'refrigerator mother'; a mother who was cold and uninviting). I had people who I trusted and who loved me tell me that maybe, perhaps I had given Caleb his autism while he was in the womb because I had gotten pregnant before I was married and I "didn't want him". I'm not lying, 2 different & very important people in my life uttered those hurtful words to me. The timing of the pregnancy was wrong, thats for sure, but I never felt any enmity towards that little person growing in me...but my trust in those people and their view of me and my life made me think, "yes, perhaps it is my fault, maybe I hated Caleb from the day the pregnancy test was positive and somehow that gave him autism...". The truth was, I was scared about being pregnant, I didn't know what life was going to look like for me, but I never thought "I don't want this baby".
What the current me would say to that former me is, "those people are liars! Don't let their words drag you down! You can be angry with them, what they said was hurtful!".
I eventually allowed myself to be angry, and to express that anger. Anger towards people who should have been supporting us but instead were making us feel thoroughly incapable of raising a child with autism, or telling us think it was our fault. Angry with therapists who judged Caleb poorly, and didn't give him a chance to shine or do his best, but seemed happy to let him flounder in the system (and made me feel dumb in the process).
But I also realized I was angry with autism.
To be 'allowed' to be angry with the struggles Caleb had on a daily basis, to be angry with God and question why anyone should have to wrestle with, what us neuro-typicals call, "simple things". Angry with myself when I put my head on my pillow at night, wondering if I had done enough for Caleb that day. Just angry. Just feeling free to be angry, and knowing I was not alone in those feelings and knowing that parents raising kids with special needs all over the world were feeling angry with me.
To my old self I would also say, "you don't need to stick with or even try every single therapy presented to you!"
I wanted to do everything I could do for Caleb when he was younger. Anything to make his life better, and hopefully easier, I was willing to try.
I know now that there are a lot of very valid and helpful treatments available for children with autism, and they are not all for us.
As a parent of a child with autism, I need to use good judgement when it comes to what to 'try' for Caleb. Sometimes, in the process of raising him, things seemed so crazy, and so bad that I wanted to do everything I ever heard of or read or saw, and implement it into our lives.
We did a lot of the 'normal' things like speech, occupational, and physical therapy with Caleb. It became clear very early on though that he wasn't in need of a physical therapist at all. Caleb is not the least bit un co-ordinated, his gross and fine motor skills are (and always have been) 'normal'.
However, he needed occupational therapy for many years. An occupational therapist works on things like attention span, transitions to new activities, play skills (yes, playing is a skill!), responses to touch or other types of stimuli, some motor skills such as learning to use scissors, hold a pencil, or type properly, dealing with aggression, and interactions between Caleb and the people in his life caring for him.
Speech therapy for Caleb was tedious and sometimes felt pointless....because he had no speech! But my instinct was to stick it out because the therapist Caleb had was sweet and wonderful, and Caleb seemed to enjoy visiting her. She helped him (and me) understand that "language" or "speech" is more than the words we are saying. We can speak by our facial expressions, our body language including using gestures, with pictures, music and singing, and also by using sign language.
Caleb learned to understand that words had meaning, and words had power. Caleb's speech and language pathologist offered a radical idea to us that echolalia (a condition that people with autism often display where instead of using their own words, they simply echo what they have heard you or a movie or the radio, etc. has said) is not such a bad thing, and perhaps should be seen as an encouragement with Caleb and his development up to that point. What she said about his echolalia was (and this was not a known idea or popular thought at the time) that it meant that Caleb's process of hearing words was working, and his brain was also capable of saying words. This was a revelation, and a great boost to us in the process of helping Caleb improve his long-term quality of life.
Bleach enemas (yup, drinking bleach as a means to rid the gut of the bad bacteria that 'cause' autism), ingesting whipworms, hyperbaric oxygen chambers and chelation therapy (which removes heavy metals from ones system with chemicals) are just some of the "non-conventional" therapies offered (or peddled...) to help in the quest of making life better for those with autism.
I agree that an immune system that isn't properly functioning can have an effect on people with autism (which is what the above therapies are meant to heal), but that doesn't mean I will, at all financial and physical costs, try everything out there.
I think there are genetic, environmental and even dietary reasons for autism and it's varying symptoms, and it's part of being a caring, concerned parent to want to try things that may help your child, but exercising caution and wisdom is key.
One 'weird' treatment for the symptoms of autism is a hot bath. The idea first came when it was noticed that autism symptoms were lessened while the child was sick with a fever.
Researchers, from the Albert Einstein College of Medicine in New York, studied how it works, and one possibility is that it switches on genes that dampen down an overactive immune system, allowing the child to not need their usual stimulation (hand flapping, spinning, head banging, etc.) to feel calm.
It's a little whacko, but it is a simple idea. There isn't any harm in it, and in truth, Caleb loves a hot bath anyway (well, loved. We now only have a shower, so he loves hot showers!).
Not every treatment is worth it, not every treatment is legitimate, and not every treatment is meant for life.
Caleb no longer has speech therapy, and the occupational therapists who would see him at his school have discharged him because his written output has improved and increased, and his sensory needs are being met through the school.
The last thing I would have told myself is two-fold.Part One: autism is part of a spectrum of disorders, and one child with autism is not going to be like the next child with autism. And two: don't compare your child to any other child-with or without autism!
"A horse is a horse, of course, of course"....the theme song from "Mr.Ed"? It goes:
"A horse is a horse, of course, of course,
And no one can talk to a horse of course
That is, of course, unless the horse is the famous Mr. Ed".
The truth is, "a horse is a horse" is false. Horses are ridiculously different from one another, whether they can talk or not!
The same is true for people with autism. Because autism is a spectrum, you can have highly functioning and very verbal individuals with autism, and people who are mentally & physically handicapped with their autism.
Though, I do like the song in some ways because I like to think of my Caleb as Mr.Ed in a field of (regular old) horses. :)
Just because you've met someone with autism doesn't mean that you now fully understand and know autism. I felt scared at times meeting people with very low-functioning autism and thinking, "oh no, Caleb is destined to a life of solitude and loneliness", or feeling happy meeting high functional people with autism and thinking, "Caleb can be that great". The thing is, both thoughts are wrong and can be harmful. Just because an individual is low functioning doesn't mean they are isolated or lonely, and a high-functioning person does not greatness make. I needed my new self to tell my old self, "Caleb is unique, he is your Mr. Ed in a pasture of horses (and all the other horses are someone else's Mr.Ed!). Take each encounter with other people with autism as encouragement, motivation, and an opportunity to learn and grow in the understanding of autism and how varied it is".
For part two, I would tell myself that comparing my child to any other child is absurd!
I spent so much time crying and being upset at play groups when I would size up my special needs child to the other, neuro-typical children. It's like comparing cookies with steak! They are not even close to similar or comparable at all! What a waste of my emotional energy comparing my child to others and feeling disappointed in him. Disappointed in Caleb, as if it was his fault! What a waste! I wish I could go back and not give a crap! Just to be in places with him, to enjoy his company (even if he was 'ignoring' me!), to nurture him and invest into his life instead of fretting over his inability to sit at circle time! What a silly young Mum I was.....
So, old me, learn some lessons from new me! Well, that is impossible, but I am glad for all that I've learned, and I honestly hope that I can help a new autism parent not feel so alone or confused. I want you parents to know that it will be o.k., that you can feel angry and sad, that you can decide what is best for your child (and your family) regarding therapies, and that you shouldn't waste your emotional energy on comparison! You have your own amazing, special (special!) needs child, a child quite unique, probably full of mysteries, so just love on that person!
I love Caleb with all my heart. He is full of trouble, but I like to see that sometimes....he's started calling me "weirdo", which makes me laugh. He has a heart full of love and empathy (and shows this in many ways), and he is truly, 100%, without a doubt, one of a kind. He shines brightly in my life, and in our family.
New me, tell the old me that everything that is to come will be worth it.
Last March I spoke about disclosure & advocacy in autism and finding that balance between sharing about the disability and not sharing. I'm just going to un-load my brain about advocacy today, and how it needs to be turning more into self-advocacy for Caleb's sake as he grows up.
Caleb is older now, and has learned a lot in the last year. However, he stills seems unaware of "his condition". I'm 100% sure he knows he is different, but I'm not sure he could put a name to it. I have talked with him on numerous occasions to help him see and understand himself better (I feel that a child with a special need should know that they are different because they already feel it and letting them know it's legitimate can be liberating), but when I mention "autism" all three of my kids have blank looks on their faces. Geepers.
At the kids' school a few weeks ago there was a presentation on autism, and when I was talking to the kids about it after I said, "well, you know Caleb has autism, right?". The girls responded with some vague, "......oh, yeah. Now I remember!". So, clearly we've missed something here with teaching our kids what the heck we're living with!
The key (I think) to really getting a child to move on from having his/her parents & other non-special needs adults advocating for them is early teaching.
Now, as mentioned above, we're failing at this early teaching bit...
However, I can say without a doubt that Caleb has learned one important thing in this last year involving disclosure and advocacy: he knows he's on a special diet.
This may not seem like a big deal, but it is to me! It means he is understanding his own limitations (even if it's only a food related limitation!). Small victories here people. :)
He doesn't need to say he can't eat wheat because he has autism, he can just say, "I can't eat wheat". Well, actually, what he really says is, "This will not have wheat?" (that's how he questions a food item), and then "Caleb will not eat wheat for really tummy will be sick". So, it may take some de-coding, but most people understand what he's trying to communicate.
There is a wonderful (wonderful!) woman at the Belleville noFrills who loves on my kids whenever we're in there. She's our grocery store Grandma. :) She comes and talks with us, tells the kids how nice they look in their Sunday clothes, and then she'll give them a treat. These treats are always different, some are hilarious (she once bought them each a litre of ice-cream because it was on sale!), and sometimes she'll bring them into the staff room and let them have a snack from there (usually freezies or popsicles or cookies). So, freezies and popsicles are ok for Caleb to eat, but the cookies? Not so much.
One day she brought the kids back to get a treat from the staff room, and they came out a few minutes later; the girls with crumbs on their faces, and Caleb, holding an Oreo.
Our grocery store Grandma said, "Caleb won't eat this cookie, and he said something about wheat and a tummy ache?". I was so proud! I explained that Caleb doesn't eat wheat (she already knows he has autism), and so our wonderful grocery store Grandma bought him a pack of Tootsie Pops. Caleb was pretty stoked about that!
Just this year at Easter, Caleb was doing a treat hunt at his Grammie & Grampies, and he found a huge Twizzler (liquorice) in a tree. Caleb happily pulled it out the tree, and said while retrieving it, "This will not have wheat? This will have wheat for Caleb's tummy is so really sick".
I was standing at a distance (taking the pictures you see above!), and was so proud of Caleb! He maybe needs to work on how exactly to get his restriction across, but he knows there is one, and that is the first, and most important step in being a self-advocate, not just having Adam and I (or his sisters) do it for him.
The food restriction is a great example of when we (or Caleb) don't need to explain that the food restriction is a way of coping with his autism. Especially in today's day and age where everyone is on some sort of food restriction diet (peanut-free, wheat-free, dairy-free, sugar-free, etc., etc.), it's fairly common to come into contact with someone who isn't eating something for any number of reasons! So, saying, "Ooohhh nooo, he can't eat wheat because he has autism and it effects his gut, which then effects his brain....(yadda yadda yadda)". You can see how this would just create more questions and make things way more complicated than they need to be. That is not helpful for Caleb or the person who's stuck trying to figure out what the heck we're trying to say.
This past winter, Caleb had a "situation" involving another young boy. The phone call I got was, "Caleb's bit someone. We've talked to him about it, we've told him that his next recess he won't be allowed to go on the sledding hill (where the altercation happened) he's apologized, but we needed you to be aware of it". I hung up and was a mix of angry, sad, confused, and so I just started crying.
In all of Caleb's years, he has never NEVER bit anyone! Ever! He's never even hit anyone on purpose. He'll wrestle with Adam or the girls, or his cousins, but he's never gotten so pissed that he just let them have it.
When he got home I asked him about the phone call I had gotten. I said, "did you bite someone?" He said, "yes". I said, "did you punch someone too?", he said, "yes". There was no mention about punching in the phone call I got, I just made it up so I knew right away he was just saying "yes" because he thought he should?
I asked him if someone made him angry at school, and he told me someone did, and who it was. I asked why he was angry at this boy, and he said (something like), "(so and so) was so very bossy to Caleb and doesn't let Caleb on crazy carpet". So, maybe this other boy was just trying to keep the sledding hill organized to keep kids from running into each other and going down before the hill was clear. Or maybe he was strait up being bossy to Caleb and being a turd, I'm not sure?! Caleb's communication skills aren't so great that he can sit and tell me a story about his day, and the only "witnesses" to this biting incident were a bunch of other boys, so the story is blotchy at best.
I wished in that situation Caleb would have the self-advocacy skills to say, "I didn't bite him!", instead of seeing/sensing there is trouble, being asked, "did you....(fill in the blank)?", and he just says "yes" to be co-operative. I honestly still don't know the real story, but I do know Caleb. I've seen him at his very best and his very worst, and even at his worst he has never acted out violently towards anyone.
I want Caleb to be able to stand up for himself and who he knows he is, and feel confident in defending himself if the need arises.
As a "normal" person, if someone accused you of something you didn't do, you would say, "that's not true", right? Imagine not being able to? You can't make the words form and come out of your mouth because your brain and mouth are not always in synch, and your brain is also firing on all cylinders all the time, and now, in the middle of a stressful situation, all you can say is, "yes", and "I am so very sorry", things you've memorized because you know it can help make the craziness stop.
What a horrible place for anyone to be in, and Caleb is there often. As he gets older I want to know he's being trained up in the skill of self-advocacy (and disclosure and knowing when to share his diagnosis with others).
In the meanwhile, I will still stand up for my Caleb (& for all my children), but with a more focused goal of creating a young man who doesn't always need someone sticking up for him, a young man who is bold about who he is; a wonderful, funny, and sweet young man with a big heart.
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?