I haven't written too many autism posts this summer, but I wanted to write one before the new school year started. A little re-cap of Caleb's summer; the good, the bad, and the ugly. As well as a look at what's coming next. For the most part, I would have to say this was Caleb's best summer ever. He has come such a long way in the last few years, especially his verbal communication, and it made this summer seem easier. I think his sisters being older (and a little more understanding of him) helped too. We also got our horse before the summer, and Caleb really enjoyed going and sitting out with the horse when he wanted to be alone. I think he appreciated the company that had no interest in verbally talking with him. When we went places this summer, Caleb did his very best yet, hands down. By "his best" I mean he didn't run away and disappear, he didn't have a flailing kicking meltdown, he (tried his best to) use words to get his feelings across, and he had a good time! Taking Caleb places in the past has always been a daunting task, and would honestly not be worth it half the time because it would end with Adam and I feel frustrated and having to leave where we were in a hurry (which, by the way made the girls cry, which added to the fun.) I am sitting here thinking back on this summer, and just being amazed. We went on many day trips, we travelled to see family, we spent lots of days at home doing nothing, we had people over, we had a birthday party, went to a birthday party, and he navigated his way through it all. Now, despite Caleb having the best summer he has ever had, there were some hairy parts. One day we came home, and I (as I always do), had to tell Caleb to let his sisters out of the van first before he barrelled past them. He was getting agitated about it, and I asked if he needed to use the washroom and that's why he was in such a random hurry, but he yelled, "no!!", at me, so I told him that he just needed to let the girls out first then. And also to not be rude and yell at me, to which he said, "not to be rude and yell at Caleb!". Back talk. Perfect. Anyway, he tried again to squish past the girls, and I said, "please sit in your seat", and he just started to loose it. I quickly got the girls out and told Caleb he needed to re-start before he got out of the van, and he acted like he calmed down little. I say acted because as soon as he jumped out of the van he just started screaming and he whipped his toys onto our porch, and really un-ravelling. At this point Adam stepped in because he could see I was feeling un-ravelled myself because of the surprise nature of this meltdown. So, Adam told Caleb he needed to go to his room to calm down. To which Caleb screamed, "Dad will calm down at his room!!!", and ran up into his room and slammed the door. And slammed it again. Then he slammed it one more time. He likes to get his door slamming just right. Well, 30 minutes of screaming later, he stopped, and was laying in his bed crying. Like a boy just out of a trance and feeling lost and heartbroken at what he has just done. I'm still not sure why that melt-down started, but it was the worst one he and this summer. He had some other smaller versions (less screaming, shorter duration), but we could see the trail that led to them, so they didn't seem as bad, or like a set-back. This last week or so he's been challenging again though. Just being rude, saying a lot of, "Caleb wants...", and "this is Caleb's!". I know he is 10 years old, I know he has come a long way, I know all the good things about him, but I sometimes have to remind myself that socially, he is about the same as his sisters; around 4 or 5. He will walk up to strangers to say, "I'm Caleb!" (which we've been trying to teach him is a more appropriate greeting than, "excuse me sir, hummingbirds have wings are so fast!". He'll say "sir" to a lady too. Oh yeah, that's not embarrassing {sarcasm, people|!). His 4 year old sister, who we've also been trying to teach how to greet people by saying hello and her name (as a side note, we're not teaching them this to talk to strangers, but to appropriately talk to other children and safe adults), will do the same thing: walk up to a stranger and say, "hi! I'm Keziah!"-actually, it's more like "Kayiya" because she won't say her own name right, but that's a different story! The point is, he is doing things a four year old would do, and that still surprises me, and reminds me how much farther he needs to go. That thought can be overwhelming, but I know he is capable of getting where he needs to go in life because he is a fighter. This summer, despite some speed bumps, has been his best. I know next summer will be even better. This summer Caleb developed a love for hummingbirds. He insisted we get a feeder, and hang it outside of the window where he can see it as he eats his breakfast. He even spotted one on the hydro wire that comes directly to our house while we were sitting on the porch chatting with a friend.
He spent a lot of time with the horse, loved feeding the chickens and collecting the eggs. He also loved chasing down and catching the hens who insisted on escaping! He loved jumping on the large round hay bales in our barn with his sisters, and would spend time jumping on the trampoline with them too. As for getting ready to go back to school, when I told him how many more days were left of summer, he was very excited about getting back to school. The last few weeks he has suddenly started talking about the school he went to for Kindergarten, a school he hasn't seen since we moved away from there (5 years ago!). He's been saying, "Caleb will go to college, and Caleb will teach kindergarten at Mountain Grove School!" (it's actually the Land O' Lakes Public School in Mountain Grove, but I can't believe he remembers it at all!). It's amazing to me that he's picked up on the idea of college (I think he got that from Toy Story 3), but that he also remembers kindergarten so fondly that he wants to go back there and be the kindergarten teacher! This idea came to him on it's own, out of his own brain. And in the middle of summer! What 10 year old kid randomly thinks of going to college to become a teacher in the middle of their summer holiday?!? Love that nutty kid. Despite Caleb's setbacks and struggles due to autism, he has come to a place (thanks to amazing teachers and e.a's and principals!) where he looks forward to school with great anticipation. I look forward to it as well with that same anticipation. What will he learn this year? How much will he grow? Where will his struggles emerge, and what will he overcome? I have faith in Caleb's determination, I have faith in the amazing school we have him in, and the wonderful people who are charged with his care while he is there with them. A new school year to change and grow, and I look forward to seeing who Caleb has become at the end of this grade 5 road. Still himself, but stronger and smarter. One step closer to being all he can be.
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Well, it's no secret I love to celebrate my kids birthdays, and I like to run with the theme they give me. I plan ahead, get lots of the work done ahead of time, and assume it'll all come together in the end. Perhaps I will share some of the behind the scenes of the makings of this and that, but for now, I will just tell you about this day. This Buzz Lightyear party for Caleb was different than my usual parties...it was humbling....it was truly a flop. Although, it was also a success. Allow me to explain. Months ago we went internet searching for a new Buzz Lightyear toy for Caleb. He has autism and has been obsessed with Buzz for months (and months!), and asked for his party to be a Buzz Lightyear from Toy Story II with a new utility belt party (hilariously specific, I know). So, we were hunting for this Buzz Lightyear with the blue utility belt, and found one at a good price, and bought it off eBay. After we had purchased it the seller e-mailed to say he accidentally underestimated the shipping and we owed him another 20 pounds (it was from England). Um, heck no. We got out of that, and managed to find another Buzz on eBay...who showed up and wasn't working, and the seller was a complete jerk about it! We did end up getting this Buzz working (thank the Lord!), but this Buzz not working, and seller being a jerk thing happened 4 days before the party, so I was getting a little anxious. We were also looking for a costume to buy him because he wanted everyone to dress up for his party, and he had been talking endlessly about dressing up like Buzz. So, we found a Buzz Lightyear costume (again, on eBay), it got to us, I opened the package....it was a size 4. Caleb turned 10. Grrrrrr........ I e-mailed the seller back, who was kind and very apologetic. We sent it back to her, and found another costume on eBay that arrived 5 days before the party. It was the right size (phew). We have rented a waterslide bouncy castle for Caleb's parties the last few years because they have always been worth he rental as the day is hot, and the kids stay so busy and happy. This year we were told they couldn't pick it up at the end of the day (unless we wanted to pay another $75!), which meant hubby was driving 2 hours that day, just to pick it up and drop it off. The weather report said a 30% chance of rain, and it was for the evening (after the party). Mmmmm, let's see what really happened...the party started at 2, and it began raining right around then....and kept raining until most of the guests had left. 30% in the evening? More like 100% all day, then a 30% chance in the evening! Oh, what else.....oh yes! We had planned on making our own burgers to save some moo-la, but the ground chicken and turkey we had were more like cat food, and refused to be shaped into anything, not even a humble burger paddy! So, an hour before the party the hubster was picking up a bag of pre-made burgers from a local butcher. And the most epic fail of the party was my cakes! Holy jumpin'!!! I had made them the day before (as I always have), and stuck them into the freezer to keep them until the party (as I always do). I will generally pull the cakes out a few hours before it needs to be served to make sure it has thawed sufficiently, and I did just that. But, I'm not sure if it was the rain, or just the crap luck we'd been having, but the black buttercream I had used as trim started to melt and run.....and melt and run some more...then the fondant got sweaty and sticky....perfect!!! It was like a horror film version of Buzz Lightyear....it was terrifying.....terrifying!!!! Now that I'm done whining about all the serious failing that happened for this event, I will tell you why it was also actually a success. For starters, Caleb was sooooo crazy thrilled with his costume. So, so, so very excited. Secondly, he loved his Buzz and had no clue it was such a stressful ordeal getting it here! Third, the kids that came to the party had fun doing anything and nothing! Some played (and froze) out on the waterside bouncy castle, some just had fun on our front porch blowing bubbles and playing with our outdoor trucks and toys. At one point Caleb and a few other kids were just plunked in the living room watching Toy Story II! Fourth, my sister (and her family) were visiting leading up to the party and helped with the grab bags and decorations for the party. And they looked great! Fifth, the parents (our friends) are the best!!! They were easy going and laid back and were o.k. with all the chaos that ensued when there was 21 kids (aged 1-10) running around he house and front porch like a bunch of wild dogs! They were helpful, encouraging, and turned a blind eye to the terrifying cakes I was about the serve the children! haha.....oh man, the cakes... And sixth...the cakes still tasted good. Apparently people will eat cake almost no matter what! :) Oh, and my chocolate dipped Rice Krispie stars worked out perfectly. ....And Caleb had a great time. This is really (and obviously) the most important thing. If he wasn't having an awesome day I likely would have lock myself in the bathroom for a good cry. A really good cry! So, for real, this was a truly humbling experience.
I like order, and things being predictable, and planning and working it out, and having it be just so, and just as I imagined it. I got basically none of those things! What I did get though was a day to make Caleb's wee heart so happy with his friends around him. A day where Caleb was dressed as his ultimate favourite character, and playing with a toy he has been watching on YouTube for months. A day of chaos and friendship, of rain and mud. I got a good anger management day by having friends who didn't care about all the failures leading up to (and during) the party. And at the end of the day, my wonderful son with autism who's birthday parties have not always been the best because he got too overwhelmed and would fall apart, managed to rolled with the punches, he stayed happy and positive, and shone bright all day! Who needs the sun for a summer birthday party when you've gone a beaming Caleb!!! :) If you read my blog regularly you know that I am a strong believer in getting to know autism. Reading books and articles, watching movies and t.v. specials, and meeting people with autism all help to inform us (the non-autistics) about the world of autism. So far this summer I have met quite a few new people with autism and their parents and I was struck with a thought-does a parent having any previous knowledge or experience effect their child with autism, whether it be positive or negative? This post may seem judgemental because I don't know exactly whats going on in each of the families lives in these stories, but they are just observational thoughts on the time I spent with each family (in bigger group settings). We have, and have had, many struggles with Caleb, and I know we get judged on the things we do. This post is meant to be educational. These experiences were educational for me, and I wanted to pass them on. I met one family who were undereducated about autism, and clearly overwhelmed by it. They called their son "retarded" in front of a group of strangers gathered for a BBQ, and made a big song and dance out of the problems they were having with their child. I get being overwhelmed, I get not always knowing what to do and how to cope (especially at large gatherings that can overwhelm a child with autism), but I also know that if those parents educated themselves a little about autism they might realize that their son has potential, isn't a lost cause, isn't just a ball and chain around their necks. This young boy kept "stealing" cookies from the kitchen. He is 8 years old, that's pretty much a standard behaviour at that age, autism or not! He wasn't asking though, so it is poor manners. As a means of dealing with this problem, the parents would semi-shout at the boy, "you can't take food that isn't yours!". But, we were at a bbq where food was out to be eaten, so it was technically his, and everyone else's. I was watching the scene unfold, so I just went into the kitchen and moved the cookies out of sight. A few minutes later this boy came wandering into the kitchen and was clearly irritated that the cookies were gone. I said, "are you looking for the cookies?" Up until this point I hadn't heard him say a word, and he was acting quite "handicapped" (stomping around, walking awkwardly, ignoring his parents and siblings talking to him {or about him|) so I didn't know what to expect. All I knew was that (besides "acting handicapped") he seemed capable and bright. I asked again, "are you looking for the cookies?". He didn't look at me, but he answered with a gruff, "looking for the cookies" (echoing in autism is a good thing, it means the person is hearing your words and can basically understand them, but lacks the verbal skills to come up with an answer). I said, "oh, I put them away, would you like one?". He said, "would you like one", so I prompted, "yes please?", which he echoed, "yes please". I got him a cookie and held it out, waiting for a show of manners. I didn't know if he actually had any (had been taught), but most kids know they should use manners because they hear other kids being prompted to do it. So, I held it out and he went to grab for it, and I said, "what do you say?", and he said, "what do you say?". I repeated, "what do you say?". He looked me in the eye and said, "thank-you". This whole episode took just a minute or two, and his parents didn't even see it. I also didn't tell them about it. I was torn between wanting them to know their "retarded" son was quite capable, and knowing that as a parent of autism myself, I don't always appreciate when someone thinks they have figured out my child and has "fixed him" for me. So, I let it be, and I just keep praying for that young man and his family. For lack of education about autism, he may grow up (actually, I feel certain he will grow up) as the "retarded" member of that family, and he's gonna ride that train as far as it goes. When he looked me in the eye and said, "thank-you", I knew he was playing a pretty serious hand of handicapped cards, and that he was functioning below his true potential. Another family I met was a very well educated mother and father, and they had 3 kids, including one middle child with autism. Their son was younger than Caleb, but I was watching him and was struck by how similar Caleb had been at that age. Full of energy, full of trouble, but full of potential. The Mom in this family had been trained as an early childhood educator, and as an Educational Assistant. So, she knew autism. But what became apparent was that she knew the literature on autism, the symptoms, the typical way a child would be handled with autism. What she didm't seem to know was her son. I watched as she hovered over him the whole time (which I completely understand as Caleb was a run-away-er for years), but she would, "don't touch that", "don't do that", "they don't like that", and telling people as she went, "sorry, he has autism" (it always bothers me when a parent {and I'm guilty of it too!| apologizes for the autism, and not just the behaviour). Anything she would ask him to do, "pick that up, please", "sit down, please", etc., he would not do. She would sometimes repeat herself, but mostly, she would just let him not listen, and wandered away with him. The child seemed able to do all of the things she was asking, perhaps she needed to say it a few more times in case his audio processing was slow, but he seemed capable. Instead, he would not do what he was told, and she would let him. He was getting away with things his siblings weren't allowed to, all because he had autism. Her understanding of discipline for a child with autism was very much what she had been taught for disciplining a child with special needs in a school. Her and her husband didn't treat their son like he was incapable, but they seemed to not be able to get out of book knowledge and raise a human being who was respectful and obedient. They were telling their other children things, and was clearly expecting those children to do what they were being told. But their child with autism was being asked a lot of things, "would you like to eat those veggies on your plate?", and the child would stand up and walk away, with Mother going after him, "sit down please!", he wouldn't, and off they'd wander. One of the siblings said, "I think I'm full", and the Dad says, "you need to finish your vegetables first", so the child sat and finished. There was a clear boundary between the "regular kids", and the child with autism. This family was well off, was from a bigger city and therefore (presumably) had some good resources for their son, and the Mom "knew all about" autism. But they were struggling with turning this child, who did need their undivided attention and support, into a person who could listen to his parents (which can translate into being a good listener to teachers, employers, etc.) and become his very best. Another family we met had a teenage boy with autism. Both Adam and I stood talking with the teens' Mom, who was very town to earth, full of questions about Caleb, his life, his education, but also had lots of good things to share. We first realized her son had autism because we saw our Caleb going on a rambling rant to their son (who just seemed awkward and loud, which we chalked up to normal teenager behaviour!). Our Caleb has started "play talking" lately. Basically, he hears adults and children talking and talking (in a normal conversation), but, despite having a great vocabulary now, he still can't quite put together a lot of thoughts together at once. So, he has started "rambling". Literally rattling on and on about something (or sometimes many obscure subjects smooshed together) but talking really fast so you can't catch anything but every 10th word. So, Adam went to get Caleb and said to the young man, sorry if he's been talking your ear off. He likes to talk, but you can't always understand what he's saying. He has autism", to which the young man replied, "I have autism! Ouch!". Watching him and his parents was a great experience. His parents were "typical" parents of autism. They didn't know what it was until they had a child with it. But then they got him into programs, read books and articles, watched movies and specials. The Mom commits her saturdays to helping her son work through his homework, and they let him be (he did have a lot of cousins at this particular function, so they knew him), but they also expected from him what they were asking of their other children. When this young man would speak to you, he would gently take your arm, and make you turn and look at him (which is a funny turn-around because generally people with autism don't like eye contact), and when we asked his Mom later if she worked with him to do that, she said, "We did at first, but hen I read the book, "Look Me In The Eye?". Ever read it?" I had read it, and knew exactly what idea she was referencing: the author had talked about being a child with autism, and how if he was told to look someone in the eye, his hearing would shut off, he couldn't use or process any words, and his sense of touch was over-sensitive. Basically, if he looked at you, that's all he was doing. Looking at you. If you wanted him to hear what you needed to say, you needed to let him look away, sometimes even shutting his eyes to really be able to let his ears hear and process. We were refreshed with their approach to raising their son with autism. He was challenging (as she shared with us), but they always expected a lot from their son, and he delivered. What we met was a 15 year old boy who clearly had special needs, but who was happy. He kept coming over and hugging his Mom (as Caleb was also doing to me). At one point when he came over, he made me look at him and said to me, "your daughter with the yellow curly hair called me a stinker butt". I said, "oh dear, well, she is full of sass. Was she joking, or was she being mean? Did it hurt your feelings?". He said, "Well, I think she was joking, and my feelings are not hurt, but I wanted you to know". I said, "O.k, I will talk to her about it, thanks". "You're welcome", he said, and walked away. His Mom just smiled at me, and I said, "he seems great", and she said he was. These parents were just "typical" parents until this son came along, but they took it in stride, they learned what they could, but they also got to know their son, and set up boundaries and rules to help him become well adjusted and functional in society. They had set up an example of how to treat their son for the siblings to see, and his sisters treated him with respect, and with a lot of love. They clearly thought he was great, and loved him. So, education, per se, makes a big difference in raising a child with autism, but what else makes a child with autism become all they were meant to be?
Support for one. Support from the parents, the siblings, the programs the child may be in. School, church, playgroups. Wherever the child goes, support needs to be there. And I'm not necessarily talking about support like knowing what to do with a child with autism. I'm talking about support like someone who believes the child can become a great many things, can excel, can learn and is smart. Support for the child as a person, not as a special need. I also strongly believe that getting to know textbook autism is a big thing. It's sounds obvious, but that first family I talked about seemed happy with "retarded", and were fairly unfamiliar with typical autism stuff (like echoing, which as I mentioned, is not a "bad behaviour", it's an important learning tool). The third thing is getting to know your child, autism aside. The second family knew autism inside and out, but couldn't seem to get to know their son and treat him as a member of their family instead of just a person with a special need. All of these families, and my own family, are different in a lot of ways. The kids are different, our daily family life looks different, the siblings and family support are different. But we've all got a common denominator, which is autism. Education is key, it's paramount, but it looks like a lot of different things. Educating yourself about autism has many sides, but the end results should be the same: that people with autism are getting treated right. With dignity and respect, with love and compassion, and with the knowledge that they are just people. Special people, but people none-the-less. I don't mean yesterday as in the song by the Beatles, but our actual day yesterday. I had a whole other post written, but I had to talk about yesterday! Let me tell you about it... We had planned to go to the beach for the entire day, but when we woke up it was semi-cloudy, but more than that, it was really cool out! :( So, as I packed up lunches and snacks, Adam surfed the web looking for indoor things to do, or as least something that didn't involve as much water as the beach! Well, anything indoors costs a lot of moo-la, so we weren't sure what to do. Caleb was hearing our conversations, and was looking concerned because we had already said the day before that we were going to the beach. Finally, after trying to find a new place to go, we just decided on 2 familiar (and free!) places to go. We gave the kids the choice in the end: Madoc park and splash pad, or Peterborough zoo and splash pad? They all picked the zoo. So, off we went, we got to the zoo at a good time and (with our sweaters on!), headed into the zoo. You have to walk past the splash pad when going into the Peterborough (Riverside) Zoo, and usually Caleb will start right away with "Caleb needs to go to splash pad!!!", but he walked in happily, and didn't even mention the splash pad. My husband and I looked at each other like, "oh, wow!". The day went by really well. Caleb (and the girls) got along, they were considerate of other people, and were being good listeners. At the zoo there is a little train you can ride, but when we got to the train the line was looooong (2 train rides long, and each ride is 10 minutes, so we knew we would be waiting a while). But, I told Caleb, "we are going to have to wait our turn, there are a lot of people. Would you like a snack?" Caleb replies..."Um, Caleb will like to ride the train?" (it was a question). I repeated, "Yup, we'll ride the train, we just need to wait first". He looked past me at the long line and said, "Caleb will have a snack". Again, my husband and I looked at each other like, "Whaaaaa?". We were seeing how far Caleb has come in a place that had once been a semi-nightmare to take him to! He used to run away, try to climb into the animal enclosures, have a major meltdown because we weren't doing the splash pad first, he would scream and be upset at every seagull we would see, he would be upset if we couldn't see every animal in it's enclosure (the animals didn't get the memo that autistic kids expect to see every animal that the sign by the enclosure says should be there!). He was honestly doing so amazing. Not even just for a special needs kid, he was doing amazing for a typical kid!!! As we were nearing the end of seeing the animals, Caleb kept saying (with increasing anxiety), "Caleb will see the parrots!". I had noticed an enclosure next to the spider monkeys that had a sign saying there was a parrot, but the enclosure looked empty, so I had assumed it was an old sign. But we had seen a fake parrot on the little train ride, so I thought maybe Caleb was talking about that, so I kept saying to him, "we saw the pretend parrot on the train ride, remember?", and he would say, "Caleb will see the real parrots!". Anyway, he calmed down about it, and we back-tracked a little to see some of our favourite animals (including the spider monkeys). As we were walking away from the monkey enclosure, we heard this terrible noise behind us, like a cat being run over! Caleb's face lights up and he screams, "It's a paaarrrrrot!!!!!". Someone close by to the enclosure we had just walked away from says, "Yup, it's right there". And there it was; a beautiful, full of colour parrot! We had missed it twice, but at the last minute it's crazy screech got our attention. I look at my husband (again), with a "what the heck?" look. I said to Caleb, "You are so smart...you were right about the parrot, thank you for not getting upset with me for not believing there was a real parrot". He didn't care about my apology, he was enraptured with the parrot, who said, "hello", which thrilled Caleb to his core! Adam and the girls left Caleb and I at the parrot while they were going to go to the car to get bathing suits and towels for the splash pad. A while later, they came back with no bag of splash pad stuff, and Adam tells me, "I asked the girls if they would rather the splash pad or the park (which is really 4 separate huge and fun parks), and they choose the parks. He had asked them to make the choice because it was getting late (and more chilly), and we were't sure we could do both the parks and splash pad as we were all getting hungry and tired. So, we said goodbye to the parrot, and walked towards the park. Caleb was very happy at the park (the last time I let him play at the park a few years ago he got so many stink eyes from more kids and adults than I care to recall), and was enjoying himself. Until I said, "o.k, 5 more minutes than we're going in our car". Caleb came over to us with tears welling in his eyes, and said, "Caleb will go to the splash pad...?". Adam explained that he girls had decided that we would do the park instead, and Caleb just walked away, going back to the park. A few seconds later I can see Caleb sitting at the bottom of a slide, biting his lip, trying so hard not to cry. So, we call him over, and he says, "Caleb is so very wants to go to the splash pad...", and he starts crying. For the millionth time that day, Adam and I look at each other knowing what this situation would have looked like even last summer. A full-on meltdown, screaming and flailing for lack of understanding that plans can change. He was being so sweet though, trying his best to understand the situation. So, Adam asks the girls, "Caleb really wants to go to the splash pad, can we go there now that we've played at the park?. The girls (of course) had no problem going to the splash pad, and when Caleb saw them saying yes, his little face just lit up, and he wiped away his tears, and said, "Caleb is so very going to the splash pad!!!" So, we hit-up the splash pad which was empty by this point. It was 6:30pm, getting a lot cooler, but the kids (and especially Caleb) had so much fun. It was good to see him enjoying it so much, knowing how hard he had controlled himself when he thought he wasn't going to have a chance to go. So, we finished up at the zoo, telling the kids how pleased we were with them for being so well behaved. Now we just needed a place to eat our picnic dinner. We wanted a change of scenery from the zoo, so Adam decided it would be nice to drive down to the waterfront for a picnic. Well, we drive downtown, and there are a ton of cars, people walking around, there is clearly something going on. So, we find a parking spot, grab our food, and head to the waterfront. As we get closer (walking in a large group of people), we ask someone, "what's going on?". He tells us that Colin James is there tonight for one of Peterborough free summer concerts. Um, what? We were so excited! We walked towards the stage, and picked a spot to sit (we looked a little strange because everyone had brought chairs, and we were sitting in the grass among them!), but we were happy! They were handing out free juice boxes, which added to the fun for the kids (who never get juice boxes!), and we settled in for whatever amount of time we thought we could last. The kids were getting tired (so was I!), we were all pretty dang cold, and we just thought we would stay open to the idea that we might have to leave quickly if the kids suddenly became that coo-coo crazy crying tired that kids are so good at! The show started at 8pm, there was 12,000 in attendance, and we stayed until the end at 10pm-ish! Oh man, the kids danced, Caleb sang along to some of the songs he knew from our iTunes playlists, and everyone forgot how cold they were! I honestly couldn't believe the day we had, Especially from Caleb's point of view! It was literally a day of, "I dunno, whadda you wanna do?", and compromise. The crazy loud concert at the end of the day, Caleb seeing people eat popcorn (and saying every 10 minutes, "Caleb will eat popcorn?", and me saying, "Um, nope"), but getting over it and enjoying himself! We thought, what a great day, look how amazing we are!....But, as is generally the case when you start to pat yourself on the back, something goes really wrong! We stand up to go, and Adam reaches into his pocket for our car key (which, by the way, is not on a key chain because it's one of those automatic lock thingies, but the part where you can attach it to a key chain is broken, so it's just a lonely key with the black top), and it's gone! GONE! There was a hole in his pocket!!! The other people at the concert had quickly packed up and left, so we were basically alone, in a dark field, with no flashlight, and no key!!! We stayed calm, the kids and I stopped to pray that God would help us find our key...or at least someone who would give us money for a hotel because both mine and Adam's wallets were in our van! The kids (and especially Caleb) kept their cool, even though they were very tired, now realizing they were cold, and starting to understand that without the key, we were stuck. Adam re-traced his steps from his last trip to the van to get our camera (because remember we thought we were going to just have a picnic and ended up at a free concert!!!), and the kids and I held hands in a line and "dragged" the field looking for the key. A police officer saw us, and came over to help (with her flashlight!), and we continued our search. By 11pm, there is still no key, and I have literally been looking at the ground with the kids for an hour. Suddenly, someone says, "someone found a key!". I look up and realize there are at least 7 police officers with their flashlights looking for the key with us (I literally didn't know they were there!), and one of them says again, "She says, someone found a key", pointing at an event staff member. And there standing with an officer is an event staff member who is waiting to take us backstage where they have the key. We tried not to get our hopes up, incase it's not our key, but we're feeling excited about going behind the stage to the trailer/musician area! So, we go backstage where there is some conversation about who took our key where, but as we stood there we see the guitarist and keyboardist from the band, who smiled at us (we hid how excited we were). Caleb goes right up to the keyboardist and says, "the police have our van key!", and the keyboardist just laughs a little at him. Not only had Caleb patiently wandered through a field in the dark in the cold (kindly reminding us how hungry he was), but he was really was absorbing and understanding what was happening (well, minus talking to a stranger who happened to be in Colin James' band!). He had stayed calm, had been helpful, and had a crazy amazing day! Seriously, what a day! What a day!!!
Caleb showed us his resilience, his ability to adapt and change, and his improvements in communication. He showed us how he can change based on other people in his family, how he can go to a loud, overly crowded gathering and stay sane, and how he can go with the flow when our key goes missing and we're wandering (and shivering) through a field looking for it! Special needs kids or not, moments in raising kids can feel like they will last forever. The terrible two's, potty training, sleeping through the night. These things change, they don't stay the same forever. The same is true for kids with special needs. It may seem hopeless, but they are changing, growing, improving. Keep working on them, but loving them for who they are & where they are. Those with autism have different things that can trigger what I call a "meltdown". A "meltdown" is a temper tantrum of epic proportions. Imagine the temper tantrum of a 2 year old. Now multiply the volume by 100, and the strength of the flailing giver of the tantrum by 100, and the stress caused by the tantrum by 100. Now imagine that instead of it being the two year old who is having a tantrum because of (perhaps) a firm "no", or a snack that is not approved of, or being in trouble for biting, you have a child who is "melting"....and you actually have no idea why! For years and years we were surprised by Caleb and his meltdowns. We weren't surprised he was having them, we expected them with his autism, but what surprised us was what they were showing up for. It wasn't that he was scared of something (though he is scared of things and will run away screaming sometimes!), it was things that actually seemed to bother or hurt him somehow. We started taking note of what was bothering him, half to avoid some of the situations, and half to desensitize him to the triggers. Some of the things that bothered him back in the day were shoes and boots, socks and underwear, fleece and silk, going to church and pre-school, holding hands, movies being stopped at any point before they were finished (completely and fully, including the credits and any possible thing that might have followed the credits), going for walks (mainly just having to turn around and go back from the direction we had come from), getting his hair cut, brushing his teeth, and bathing. His new things he has a hard time tolerating are being touched gently (especially on the head) without him seeing your hand coming (and as an add-on, he hates playing tag because of this), he still doesn't like if he can't watch a movie until the bitter end (though he will allow it to be stopped throughout for different reasons-as long as he is the one who can turn off the t.v.), having to turn the van around (if we forgot something or got lost), and having to tell him he's wrong about something he is sooooo very certain of. For example, a tomato being a fruit, and not a veggie, the fact that there are fish called herring, and a bird called a heron that eats fish (he thinks I'm telling him a heron eats a heron), and that the seasons really do go in a particular order, no matter how confusing Canadian seasons are! He also won't let you turn off his night light, and if you do turn it off, he will turn it back on, then off, then on, then off again. Sheesh. Some of his triggers (from the past and now) are related to his senses and his sensory overloads, and some are possibly because of things Caleb can't express verbally, and gets frustrated about. My thing about autism and triggers is that some need to be left alone (aka-ignored or risk mega meltdown!), and others really do need to be worked on until the person with autism can function. For instance, getting Caleb to come to church, and get to school without screaming and having a meltdown was important for our family and for him. Making him not turn his night light on and off and on and off, I don't really care about! It's not a life changer. He used to have a meltdown almost every time we went to the grocery store, I'm still not 100% sure what was triggering those meltdowns, but I knew he needed to learn that the grocery store wasn't so scary. I started fixing that problem with Skittles (I actually worked on a lot of his problems with Skittles!). I never said, "You're being so good, here's a Skittle, I would just nonchalantly pass one to him. We'd get to the store, I'd hand him a Skittle. We'd get a cart, I'd hand him a Skittle. I'd put him in the cart...I think you get the idea. As soon as he would start a meltdown (and, by the way, if you are trying to desensitize a child to something that causes them to react negatively, just tell yourself it will take a while, it will be stressful, but you CAN do it!), I would stop with the Skittles, and carry on at the grocery store, screaming child in tow. I wouldn't talk to him really, I would just carry on. No more Skittles. Honestly, I don't know how long it took exactly to get him to a point where he would do groceries with me, it took a while, but he can do it now. I don't even have to give him any candy! I know right, mother of the year (sarcasm people). I'm not sure what exactly I'm trying to say except that I just wanted to give you another glimpse at Caleb and his life so far. How far he's come, how much he's accomplished, and how difficult and different his life has been from an average 10 year old. Autism has made his life tricky, and challenging, but also made him strong and resilient.
We all have triggers, things that set us off and irritate us. Maybe we should keep Skittles in our pockets for ourselves to teach us to associate good things with the bad situation. Just kidding. But maybe we can learn something from Caleb about overcoming our fears, the things that make us pull back, and want to "meltdown". Push on, challenge yourself! You don't know how strong you can be until you push and see how strong you are! Don't assume that because something has scared you, or you failed at something, that you can't try to do it again. Geepers, if Caleb felt like that, he wouldn't go to school or church, would still be bare feet and underwear-less. He wouldn't brush his teeth or take a bath, and he wouldn't be the amazing young man he is today! I talked last week about autism and scheduling in the summer (or not scheduling in the summer). A whole week has gone by- one entire week of summer holiday-and I'm still feeling sane! :) In the last few months Caleb has learned that his birthday is in July, though the fact that there is a specific date was still unclear to him. So, he has been saying "Caleb will go to Toys R' Us on Tuesday!", and we kept saying, "well, maybe we'll go, but it might not be on a Tuesday...?". Then our wonderful Leslie (Mrs. Beatty. Caleb's former E.A., and a friend to us) says, "maybe because July starts on a Tuesday, so he thinks it's his birthday?". Yup, that is actually very likely what his brain is concluding! Smarty pants. All that to say, Tuesday July 1st came and went, we didn't go to Toys R' Us, and Caleb did fine with that. A year ago, that would have resulted in a pretty serious meltdown, and an entire day being lost. Well, as for this week, Caleb has driven around the county with us not exactly knowing where we were going (looking for something on Kijiji), then dealt really well with the many animals we found when we got to said house. He has been told he was going to the park to play with friends only to stay home because I was immobile due to a pulled muscle. Our friends came here to play, and he was happy with that. He had a sleep over with Mrs. Beatty and her kids, and spent an ENTIRE day in the sun at the beach with us, and then stayed up until 11:30 ish......all without a gripe or fight or hint of a meltdown. He enjoyed Canada Day celebrations with all sorts of unknowns! First, he didn't care that the parade was short (the girls complained!), then he played in his not-bathing-suit-shorts in the water from a fire truck hose. Third, was o.k. with not eating Canada's birthday cake because it was not gluten free, and even stood patiently while Adam and I talked about what we would do next: stay in town for more activities, or go home. Honestly, at the end of that day, if I were keeping score, he would have won the best child award in our house! Rewind 6 years ago when I was pregnant with our second and was so scared and nervous about having another child while still trying to care for Caleb who was more difficult than I could have imagined! Geepers! I could have never guessed he would become who he is today! But, moving on with the week, yesterday we went to a new splash pad in Napanee, and he not only didn't complain about it not being our 'usual' one in Madoc, he played and played and played and never complained about being cold (even though it was overcast/a smidge rainy). Then he played at a friends house (where all the kids were much younger), and I didn't have to tell him once not to steal toys from the babies (that is a regular thing, by the way!)! I did have to tell him to stop stealing the Rice Krispie squares I brought, but I think that might be a normal boy thing?! Last night while I was praying with him, I just praised him for what he accomplished, and that I was proud of how hard he worked to have such a great day. I acknowledged the fact that today could be a different story, and that would be o.k. too. Most "neurologically typical" (aka:non-autistic) children have good days and bad days, so I need to expect them from Caleb.
All this to say, we've gone through a whole week without really informing Caleb about much, and he has rolled with it all. This week ahead may be a different story, but that's fine. At the end of the day, he still has autism. He may be learning to really deal with it better, but he is still dealing. It's not magically gone, or healed. He is just an amazing young man who works hard everyday to do what he is being told and to implement what he is learning. He is still crotch grabbing, speaking very loudly, and if someone we meet says, "how are you?", he goes on a rambling, mumbling monologue about Buzz Lightyear and his utility belt. I love that kid so much though, he is so full of life, and sillies. He is honest, and genuine. He struggles, gets so confused, still can't follow direction very well, but he is determined. Whether that determination shows up as stubborn and difficult, or determined with a great goal and wanting to see his results from his hard work. I am still excited/nervous about the rest of the summer, but with one week down I am in awe of my Caleb! Today is the last day of school! It's crazy! I cannot believe that Caleb will be heading into grade 5 next year! Oh my, oh my, oh my..... Ever since Caleb started school, summer has been a time that worries me (worries is a poor word, it made me feel sick to my stomach is what it did!). He really loves the structure of school, and the summer would tend to be unpredictable which would equal more meltdowns. On one hand, all the experts say "structure, structure, and more structure for kids with autism!". It's a valid point. Kids with autism have such sensory problems that they generally thrive on rituals, schedules, and sameness, and have a hard time with how chaotic the world can be. Procedure can give an element of comfort to those who find our world more confusing than most. But on the other hand, even though they desire order, creating it at all costs can create a child even more obsessed with order. I know that for many with special needs kids in their care, they may be unhappy with that last comment, but it's just my thoughts from this past year. If a child who has a hard time handing change gets to perpetually have things just-so, they will only learn that things will always be just-so. Which can't be the case. No matter how hard someone tries to create a predictable environment, change is inevitable. It seems like I've gone off on a tangent, but what I am trying to get to is this: summer can equal torture for lack of routine, but summer can also equal torture because of a routine! In the past, when summer had no routine, Caleb would be on his very worst behaviour. Fighting, meltdowns, poor eating, bad communication......Oh, summer fun. But, summers with a must-stick-to-routine created a lot of grief in the family because if someone invited us over last minute, we would have to say no because Caleb hadn't been warned first thing in the morning. If we needed (or wanted) to run into town for something suddenly, but hadn't let Caleb know when he woke up, it wouldn't be happening (well, unless we thought him having a jumbo fit in a store would be fun!). So, routine worked for him, but not the rest of us (well, I sometimes liked it), and no routine worked better for us, and not for him. Summers sucked. But something has happened in the last year...Caleb has learned that as much as we try to plan and create a structured environment, life isn't a routine maker! In fact, I think if life had a best friend, it would be change! Caleb has come home from a school day of dis-order, and has a great and happy evening still. Before he would have a chaotic school day, and get through it, then get home and fall apart! We very slowly started to blend the two worlds together. We had routine in that we have a predictable day in some elements (wake up, get dressed, then breakfast, etc.), but no routine in that we may be staying home, or we may be packing up and heading somewhere. Caleb (despite his autism, and us reading and being told that he will only thrive on routine), has managed to grow leaps and bounds this year with a routined and non-routined life. Not only has he grown in his communication skills, school work, eating habits, and relational skills, but he can easily switch gears, and cope with the (sometimes sudden) changes in his day. I am still feeling a bit of a knot in my stomach about the summer, but I think this year it has more to do with the 4 and 5 year old girls and all their bickering!!! Sheesh. In this last week of school, Caleb has had some pretty different days, but has done so well. We even went away for one day to visit my sister at a cottage near-by, and at the end of the day Caleb said to me, "School is all done and summer for cottage", and I said, "nope, you actually still have 2 more days of school". A year ago this conversation would have ended in a complete, full on flailing meltdown, but this time he thinks about it and says, "Caleb will go to cottage later". That was it! What a kid! I sometimes get cranky and unpleasant about changes in my day, and what I thought was going to happen, and there's my son, my autistic son who needs "structure, structure, and more structure!" shrugging his shoulders and getting on with the day. I have said it before, and I will likely (hopefully) say it my whole life, but I need to learn from Caleb. He can still get bent out of shape if things change, but even in those moments, he gets over it faster than he used to. I can be grumpy all day because of a last minute change to the day, but man, I see Caleb and he is working so hard, and trying his best to see that we can have order and disorder, and things can still be alright! There are so many adults who get upset when things don't go as planned, but guess what? Life happens! If my son with autism can struggle to accept that, I feel that the rest of us should be putting in some effort too. Happy summer to those with kids in school who are wrapping it up, or to those just excited about the summer! Plan some fun things to do, but also leave some room for summer surprises; last minute bbq's, trips to a splash pad or beach, getting a freezie and heading to the park, whatever! Stay calm, and summer on. :)
In April I wrote an autism & sibling post, but from my own family, and what I see. Today's autism & sibling post is from an article that I really loved from the Hamilton Spectator. It's written by a dad, Joel Rubinoff who has one son with autism, and a younger son without autism. I like his honesty, his point of view, I love how his boys have so much love for each other. I appreciate him seeing and knowing that younger siblings often look up to older siblings, and look to them to lead the way, but in the case of older siblings with special needs, at some point, the younger may be the one leading the way. And The Little One May Lead HimBrothers Max & Sam. The older one with autism, the younger with a sever case of hero worship.By Joel Rubinoff Find the story on thespec.com
The delight they take in each other's presence is palpable. They hold hands in the car, crawl into each other's beds for comfort and ascend the heavens in space capsules constructed from elaborately arranged futon pillows. Max and Sam. Two brothers, 19 months apart — the older one with autism, the younger with a severe case of hero worship. At ages 5 and 31/2, they're pretty much inseparable, which, as their dad, I find both touching and bittersweet. Touching because this is how I know it should be. Bittersweet because I know, as most parents of autistic children know, that at some point, this dynamic may well reverse itself, with the protege overtaking the master. Never mind the ethical quandaries: Is it right? Is it fair? It's already happening. "It's OK, Max," Sammy comforts his older brother, whose "big feelings" have once again resulted in Sammy getting screamed at inches from his face. "We can watch your show instead. I don't need a turn." "It's OK, Max," he'll tell him as I rev up the car stereo. "You can pick the first song. I can wait." "It's OK, Max. You can have the last Orange Fiesta juice box. I'll have this crappy, no-name grape drink instead." It's an odd thing to confess as the parent of an autistic child, but I sometimes feel more protective of Sammy than I do of Max. Max will be OK, my gut tells me, with a little help and careful monitoring along the way. But Sammy? How, I wonder, will this history of indentured servitude affect him in the long run? When we found out Max had autism, Sam was 19 months, a freewheeling vagabond attempting to scale household furniture and cram his scraggly stuffies into cookie jars and heating vents. For an older brother who struggled with the give and take of human interaction, this kid was a godsend. "Sam, make sure you're not in my personal space!" Max would declare imperiously as his brother looked bewildered. "OK, Max!" "Sam, it's dark outside — time to fall asleep. FALL ASLEEP! If you don't fall asleep, I won't be your best friend!" "OK, Max!" The autocratic cruise director and his dutiful protege. But it works both ways. While Sam looks to no-nonsense Max for empirical benchmarks, factual certitude, the correct way to unscrew an Oreo cookie, Max gauges his more emotionally astute brother — in a scientific, bug-under-the-microscope way — for clues on how to interact with people. To be fair, Max has come a long way since he was diagnosed in fall 2011. At that time, when he wasn't staring into space or lining up toy trucks, he was having two-hour tantrums over napkins that weren't folded correctly and toast that was improperly buttered. But two years of speech therapy, occupational therapy, behavioural therapy and Daddy tickle fights have helped this tiny titan surpass every limitation imposed by the "Oh my God, he has autism!" school of cautionary horror. Every parent of a special-needs kid knows what I'm talking about: that sucker punch in the gut when the doctor looks you gravely in the eye and tells you "your child is not like the others. He will face challenges. He will need help." It feels like the end of the world. And because the autism community is split over priorities — celebrate differences or find a cure? — because interventions are chronically underfunded, because no one knows what causes this complex brain disorder that affects more kids than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome combined, you find yourself giving up hope. But that's about you — not your kid. Your kid is just fine, thank you, content to view the world through his own unique prism. And somehow he's evolved into a bright, well-mannered kid with a whimsical sense of humour and keen sense of irony. Like Dick Cavett in short pants. Stigma? Despite alarmists who consider autism a one-way ticket to social rejection, Max has friends, gets invited to birthday parties and — this one confounds me — is greeted like the Norm character on TV's Cheers every time he shows up in the kindergarten playground. "MAXXXX!!" This, of course, isn't the focus of most autism stories you read in the media, which tend to fall into one of two camps: 1. Kids so overwhelmingly needy their distraught parents feel compelled to drop them off at public shelters. 2. Kids everyone thought were lost to the world who turn out to be — get this — scientific geniuses. As far as I can tell, Max — at the higher functioning end of the autism spectrum — is neither, just a regular kid who loves astronomy, art and gymnastics and who, yes, faces unique challenges. Does he have meltdowns? You bet, though not as many as Toronto Mayor Rob Ford. Does he respond well to change? Like the Titanic heading for an iceberg. Which is where Sammy — the Phil Donahue of 3-year-olds — comes in. "Sammy, come into my bed and we'll pretend it's a rocket ship and go to the cookie planet," I hear Max suggesting over the baby monitor as I lie comatose in bed. "Weeeeeeell ..." Sam, a classic slow waker, hedges in his elongated Jimmy Stewart drawl. "I think I'll just stay here for awhile and rest." And sure enough, Max — a leaner, combover-free Donald Trump — blasts him. "THAT'S IT, SAMMY!" he bellows. "YOU'RE NOT MY FRIEND ANYMORE! I WILL NEVER PLAY WITH YOU AGAIN! I DON'T LOVE YOU ANYMORE!" For Max it's an immovable mountain, and one he will struggle to surpass. Will he do it? No one would accuse me of being an incurable optimist, but I don't doubt that — with a little nudging and a lot of screaming — he'll grow into a happy, productive adult. Hell, we think he's fantastic — why shouldn't everyone else? But the stats tell another story, with nine out of 10 autistic adults unemployed or underemployed, regardless of IQ or education level, says the advocacy group Autism Speaks. Many live with their parents, their potential squandered, struggling to find their place. But it's Sammy — the pint-sized peacemaker — who will be around to witness the milestones, the heartbreaks, to help Max navigate the nuances when things become overwhelming. But lately he's looking a little frayed around the edges. "I'm mad at you, Max!" he'll growl when goaded to his breaking point. "I'm not your friend anymore!" Max looks shocked, but Sam — shaking with emotion — stands his ground. It's moments like these — when the devoted younger sib teaches his struggling older brother how the world really works — when I feel like rushing over to raise his little fist in triumph. "Atta boy, Sam. Give him hell, don't take crap. And whatever you do, watch his back." When your first child is born, something changes. The change is not that you suddenly become a parent, I believe the change and becoming a parent happens after that initial birthday, in all the moments that follow. It's taking what is about to come at you, and not only doing your best, but allowing it to change you for the best.
1o years ago I gave my husband Adam a Fathers Day card preceding the birth of our first child, Caleb. We expected a lot f changes when we became parents, a life we knew would be different. I know we were worried about being enough for a new tiny person, being whatever we needed to be to be able to raise a decent human being up in this world. But, as Caleb got older, and it became evident that something wasn't quite right, the "simple" roles of parenthood we thought we had were really beginning to change. Imagine someone had given you a painting, and told you "this is what parenthood will look like", so you look at it, you study it, you imagine it even when you're not looking at it. Then one day, that person comes back and says, "I actually need that painting back. Parenthood will look different for you, but I'm not quite sure how different, so I'm not painting you a new picture....you'll just have to see how it goes". When my husband and I first realized our son had autism, there were different reactions. As Moms, I think we tend to blame ourselves for everything regarding our children. Obviously it's because we're perfect and nothing could ever possibly fail while under our watchful eye, and if it does fail it's our fault (really, our need to blame ourselves must stem from us assuming we have the control over everything, right?). My husbands reaction was two-fold. One was a manly need to fix the problem, but the second reaction was the hardest. He saw that painting, all the things he hoped for, being carried away, with nothing left to look at in it's place. He mourned the things a "regular" father and son could do, that he likely wouldn't be doing with our son. It wasn't an all at once reaction, but one that would come in waves as we watched our son struggle with hurdles other kids were leaping over. In the years since Caleb was born, and we found out he had autism, things have been good, bad, and ugly. My husband has not been a perfect Dad, not by any stretch, but what he has been is a willing student to our son. And I think that does make an amazing father. Pam Brown, an Australian artist and poet said, "Dads are most ordinary men turned by love into heroes, adventurers, story-tellers, & singers of songs." I think having a special needs child makes a Dad feel even more ordinary because things that seem like they are par for the course in raising a child, especially a son, are difficult, or impossible to achieve. The everyday things in raising a child with autism can be so challenging, and a lot of days you're left wondering if any of it matters at all? But, in the last 10 years what I have seen is my husband loving our son, our sweet, amazing, but often terribly difficult son. I've seen him fight and advocate for him, try to include him, even when it seems like our son has no idea what is going on. He's passed down knowledge to him, perhaps not the knowledge he anticipated handing down, but for our Caleb, it is important. He will sit with him and "research" (Google!) the things that Caleb is interested in so that they are learning it together (turns out a tomato is a vegetable, which Caleb is NOT pleased about!). He will act like a complete goon because Caleb thinks its funny to see a grown man dancing like an idiot (o.k, I think everyone actually finds that amusing). Adam has worked so hard, has cried many times, fought many times, laughed many times, been angry and confused many times. But at the end of it all, he's still pushing on, believing and hoping the best for our son, and trying to find the best in himself while on the journey. I like to read different blogs from parents who have children with autism, and I also like to read up on current research, and on "what's happening" in autism. On the Autism Speaks website, they recently had Amy Hess, mother to Henry (who has autism) and the site coordinator for the Autism Speaks ATN Center of Excellence at Nationwide Children’s Hospital in Columbus, Ohio, answer the question: "How can we help our son find his passion?". Here is her answer, along with some thoughts from child psychologists Barbara Mackinaw-Koons and Caroline Murphy, with the Autism Speaks Autism Treatment Network at Nationwide Children’s Hospital and Ohio State University. How Can We Help Our Son Find His Passion? "Our son, Henry has autism and is limited in his use of language. We’ve learned to think outside the box in my approach to finding his talents and interests. After his diagnosis of autism, we attempted traditional activities like soccer, T-ball and swim lessons. Each proved frustrating for our child and disappointing for us as parents. While we watched our friends and their children continue down the typical path, we came to realize that ours would be a different one. One less travelled. Yes, there was some sadness in not following the typical path. But I also welcomed the opportunity to explore different options. I think the most important step was paying attention to Henry’s interests. He loved water, snow and drawing. So we began to focus in these areas. We regularly go to the beach, where Henry loves to swim. He’s also become a very accomplished kayaker. That’s him in the picture below. In the winter, he loves to ski and with our encouragement he’s become active in his school ski club. Thought it took us 7 years to get him to feel independent on the big hills, he now skis faster than we had ever imagined. We are even more proud of his evolving work as an artist. I often call Henry my serial artist. He draws constantly, and my house is full of all types of paper with faces, characters, models and sketches. While sometimes, I’m tempted to sweep away the clutter, I realize that it is part of Henry’s creative process. To encourage his passion, we take Henry to art stores so he can pick out markers, paper and other art supplies that meet his needs. With his limited language, it can be difficult to identify the best art media for him. So taking him to art supply stores and exposing him to the options has been important. The next step was for us to begin visiting venues that showcase art. With exposure and experience, Henry has been able to give us clues to his likes and dislikes. We recently recognized the need for assistance from an art professional. Henry now works with his art mentor, Tracy Settle, each week. She introduces new concepts and techniques to help him develop his talent. Henry recently entered a piece of artwork he titled, “There’s No Place Like Home,” in the Ohio VSA Art Expressions tour. He won third place in the youth category and went on to win the People’s Choice award! His art piece was purchased on opening day. (photo below) Henry feels confident that he has a future in the field of art, and so do we. His interpretations of musical productions from the Golden Age of Film invite his viewers to see the films from a new perspective. In his work, Henry highlights aspects of these films that go unnoticed by the untrained eye. His artwork is reminiscent of the techniques used by artists when creating the sets and characters for the films. Henry is very passionate about his artwork! We often find him hard at work, surrounded by sketches, drawings, and three-dimensional renderings of props from famous movies". Drs. Mackinaw-Koons and Murphy: "Amy’s story illustrates several important strategies for helping individuals with autism find their “niche” or develop strengths no one realized they had. As psychologists, we talk with parents about being creative and persistent, as well as increasing their own tolerance for failed attempts and roadblocks. Many parents feel they’re entering unchartered waters when a child can’t succeed in the traditional activities they envisioned for their child. Amy’s point about “thinking outside the box” highlights this so well. Great talents go beyond those of star quarterbacks, valedictorians and head cheerleaders. With individuals who have autism, it often helps to encourage the person to follow personal inclinations, passions – even restricted interests. In this way, the individual can start to build a skill set. Does your loved one have an amazing strength in rote memorization? Try a drama club! Memorizing lines from the script could be a great fit. Does your child have a great love of animals? Consider volunteering with your child at a local pet shelter. In the process, you are helping your child develop important caretaking skills. The concept of “signature strengths” is a good way to think about this approach. For Henry’s parents, carefully observing his personality and natural tendencies provided a good menu of opportunities. His parents identified strengths and began to add activities and opportunities that enriched the budding abilities they observed. Most likely, you aren’t going to discover that your child suddenly possesses an amazing new skill or talent. Anyone who has a special talent will tell you that he or she didn’t arrive there by chance or without effort. Persistence and patience are important. Behavioral difficulties and anxieties may well arise around trying new things, and we encourage you to provide “gentle nudging” with lots of support and cheering for willingness to try. Openness to opportunities, courage to try new and different things, and celebration of small successes are all so very important! Parents and other caregivers must be willing to accept initial failures or even embarrassment if at first their loved one doesn’t fit the mold. Continue to advocate for your child – whatever his or her age – and encourage the development of the talent you have seen. Just like any individual who shows a special gift or talent, the road to success is achieved through consistent trial and error and repeated opportunities for practice. Remember, we always get better at what we practice. You could ask Henry … but we hear he’s busy finishing another amazing drawing!" I appreciate their thoughts on this subject, and, even though I may realize a lot of the points made, or have said them myself, I like to read/hear about it again. The one line "parents and other caregivers must be willing to accept initial failures or even embarrassment if at first their loved one doesn’t fit the mold" really hit home for me, because although we love Caleb, and think he is amazing, we often find ourselves angry and embarrassed with him in circumstances where we need him to "fit". That's not him though, that's us. Immature, selfish adults who want to pretend we're perfect.
As parents of special needs, or regular needs children, we need to honestly evaluate why our kids are doing what they're doing. Sometimes a child can have a hidden talent that only comes out from us parents signing them up, and letting them try it. But sometimes a child is driven all over the place, doing all of their "activities" that the child only continues to do because the parents insists they do it. I wouldn't encourage a child to adopt the habit of quitting things they don't like, but let them finish what they started (whether they wanted to do this activity, or you wanted them to), then listen to what your child has to say about that particular activity and why they may or may not wish to continue. If your child lacks the verbal skills to tell you their thoughts about the activity, watch them. Do they seem stressed before or after they go? Are they enjoying themselves while at the activity, or do they seem overwhelmed, anxious, and not-involved/included? Finding a child's passion is so important. Helping a child find a career is one thing, and sometimes the career path and passion path cross, but finding a passion can be such a fulfilling endeavour. Having a passion can give someone something to look forward to in their spare time. Or if they're blessed enough to have their passion and jobs be one in the same, it can make the everyday so satisfying. It's not about just 'finding an interest', it's about seeing who is inside, and being able to express that. It may not look the way we thought it would, or hoped it would, or fit the mild, but that's passion. |
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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