Awareness and Myth-slapping

As you no doubt have heard, today, April 2nd, is Autism Awareness Day, leading into Autism Awareness Month. There is a hot debate going on whether you should be wearing blue or walking in red, but frankly, the colour of my shirt is not going to play  into Incrediboy’s progress and I have never been much of a joiner. Yet, raising awareness of autism and the issues of autism is very important. It is a very misunderstood neurological disorder that is shrouded in myths and false information. All parents of a child with autism have come across these myths, dealt with them, even fell for them or accepted them whole-heartedly as the truth.  I could go through a list of them all but I’ll focus on those myths we have come across during the years that Incrediboy has been in our lives.

When someone says something to you that is a myth or is false, you can’t help but feel a bit angry. You wish that people were more well informed and that they wouldn’t open their mouths and suggest things that are in no way helpful. The truth is, however, that most of the time, they are trying to help or trying to reach out. But when you as a parent hear these myths bandied about (for the hundredth time) – you just want to slap the speakers. We don’t (or we shouldn’t) actually do it, so I like to call these Myth-slaps. Myths that I wish I could slap into oblivion. Here are a list of ones we have heard in connection with our son:

Myth-Slap#1 – “Oh he is doing so well. He is cured now.” Or “He will grow out of it, won’t he?”

No. There is no cure for autism and I don’t think there ever will be one. You can teach someone to cope with their ASD, to manage or mask their symptoms and to fake being “normal”. They can do such a good job of acting “neuro-typical”  that you would have a hard time noticing that they aren’t but it is just that – an act. The “difference” is part of them and will always be part of them. They do not experience the world the same way and many adult autistics have said they are just doing what they have to in order to pass as “normal”. This is something that needs to change, so the people with ASD can be themselves and be accepted for who they are.  Remember – “normal”  is only a setting on a washing machine.

Myth-Slap#2 – “You can leave him with us! Don’t be such a worrier” 

No, we cannot just leave him with the neighbours’ kids and relax. Yes, he seems just fine, a bit loud, kinda awkward but basically fine, right? Except that can change in a instant. The aspect of autism that is most commonly misunderstood is the perception of senses. Simply put, they do not sense the world the same way as other children. They can be overwhelmed by loud noises, bright lights and strong smells. Once they are overloaded then they may struggle to control their reactions. Hand movements may became erratic or they feel pain or numbness and want the feeling back. In this state, they can lash out at anyone or anything in trying to get the feedback they need to make sense of the world again, (Ever have that sensation of falling when drifting off to sleep? Imagine not being able to shake off that sensation. Ever). They could hurt themselves, or the kids around them or any object they can get hold of – and they are unable, in that moment, to control it. So when we decline a birthday party invite or a chance to let them play in your backyard so we can have some time off – we refuse not because we are anti-social. We refuse because we know how to handle a meltdown and you don’t.

Myth-Slap#3 – “Prepare yourself. He may never talk and will likely never have empathy or show affection”

I know the doctors are just trying to give the news in such a way that we don’t develop false hopes and there are many families for whom this is true. It is a spectrum disorder and the ones on the far end of severe are very difficult to help at the best of times. We are very,very lucky to have a son on the mild end of spectrum and there are families that would do anything to be in our shoes. Still, we learned very early in this journey to never believe that a doctor or professional  of any sort  knows Incrediboy better that we do. We are his parents and our hearts guide us more than anything else.

Myth-Slap#4 – “What is his special gift? You know like Rainman? 

I have grown to hate that film. The percent chance of someone with autism developing a savant talent is the same as a neurotypical’s and it is very low. The media loves to play up the ones that do but you can drive yourself crazy looking for a savant talent that is not there. Incrediboy has an amazing memory. He has memorized all the countries in the world, their flags, the capital cities,  all the US states and Canadian Provinces/Territories. That is not a special talent but a singular focus on something that interests him. Many people on the spectrum have a singular focus, such that they memorize incredible amounts of data about it and can relate it to you if you sit near them long enough. But anyone can do it if they are willing to be so focused.  That is the difference, the ability to focus on something you like so much as to shut out everything else. If we can turn that focus into a basis of a career – that would be lovely.

Myth-Slap #5 – “All he needs is a firm hand and a good swat on the behind”

Yes we have had people say this to us, more than a few. Usually folks who have no tolerance for noise or disruption in their lives and feel that if your child cannot stay silent you should not take them out. Well, you can’t beat autism out of a child. The outside world is a very scary place for someone with ASD, with sounds, lights, smells and it is hard to sort out. Sensory overload is around every corner and it is tough on them.  But if we didn’t take Incrediboy out into the world, how is he going learn to cope (or show off those new coping skills)?  We continually struggle with this, he is currently in a “no go” mode about venturing out and we are forced to start again with small steps towards going out into the world. A child who won’t go to Toys are Us because it is scary – think about that for a moment.

Myth-Slap#6 – “I heard about using X and they said it gets great results.

Gluten free? Hug Therapy? Bleach enemas? Yes we have heard of them all and some of them might work for others but the ABA therapy we are using right now is working and working well.  As I said before, many people are dealing with the far end of the severe spectrum and I do not fault them for looking for an alternate answer. ABA at its best helps 50% of kids with ASD, yet it is the only one sponsored by the Ontario government. So if it doesn’t work … Yeah I would  try something different too. There are a lot of people making money off autism and they are not all helping. If we could change the way autism is seen in the world, the news and the people – fostering acceptance and awareness, then things would not be so desperate. Another common myth is that you have to get therapy in the first five years or that is it – game over. That is not true, the brain develops past the age of five and research is showing there are other peak learning times beyond 1-5.

So those are 6 myths that I wish I could slap into oblivion.  I hope that one day we can accept all people as they are and not as they are supposed to be by some socially accepted concept of normal. Incrediboy has enriched our lives so much in the seven years he has been here and I am sure he will keep on filling us with joy and wonder. So read some blogs, grab a book, watch a youtube video and become more aware of autism and what it is all about. Normal should remain on the washing machine, but our world deserves so much more.

Sometimes You get the Best

I started writing the post below back at the end of August but I never finished it or posted it because I didn’t know where I was going with it. It is now January 2015 and the whole thing turned out to be a  non-event but it is a reminder that as parents of autism we often hope for the best but are expecting the worse.

We are approaching a very big moment in our family that will impact us in ways that we cannot completely fathom until it happens.  The Incredible family has stood together through thick and thin with Incrediboy and his challenges but this time, we will not be able to as the event revolves around a single idea – Increditeen is leaving home to go to University.

Increditeen has been just …. well …. incredible when it comes to her brother. She has always been an empathic person who cares deeply for people but the but for IB she is his friend, his secret conspirator, his provider of cuddles and his protector.  She will stand up to anyone if she thinks he is not getting a fair chance including mom and dad, and I wouldn’t have it any other way. She is the one that plays games with him but doesn’t let him win all the time and yet makes sure he has fun.

But the time has come and she is finished high school now with an impressive average and got accepted into every University that she applied for, with scholarship offers. She picked one that is on the outer edge of town because the program is the one that appeals to her the most (Family and Community Social Services). After some discussion early on in her choices, we agreed that going to residence is best.

Why? Why on earth take a support person you can rely on and suggest she move out on her own? Yes, I have had a couple people ask me that and although I can understand where they are coming from, she is not mine to tell what to do, nor hold her to a life that is not hers. She’d give up everything for her brother, even her dreams of university if we asked her. This is precisely why we could never ask her to do that. 

She has to find a life of her own out there in the big old world and so does Incrediboy. It will not be easy. I won’t say he can’t understand because I think he will in his own way but he does not have to like this in anyway.  I feel for him, as I am not sure how well I will adjust either. Increditeen and I have had a close relationship for a long time now and I am having my own issues with the thought of her leaving. Luckily for us, she is not across the country and we can have her home on weekends and holidays and there is always the phone or whatever camera/internet system is available.  We are having her go away a couple of times over the summer so Incrediboy can get used to the idea that she goes away and she also returns.  It won’t be easy but few things in life are, that worth it. 

I remember once meeting with her Grade 1 (or was it Grade 2?) teacher who spoke to me of Increditeen as if she had a problem.  “Well,” the older lady teacher said to me in a firm voice with the edge of years of experience dealing with trouble children. “You know she is not very obedient.” 

“I didn’t raise her to be obedient.” I replied plainly, “I raised her to think for herself and to challenge authority.” 

“Oh! Well.” She replied, obviously writing me off in her mind as one of those parents who secretly was an alien bend on destroying the fabric of society.  The interview ended rather quickly after that, presumably because there was no taking to that kind of parent. Guilty as charged. 

I really like how my daughter has turned out so far. I admire her determination, her courage and her absolute stubbornness in dealing with being told she can’t do something she wants.  I am very proud of her and in no small amount do I hold pride in her accomplishments. If anyone can right so wrongs in this world, it will be her.  I pity any who would stand in her way. 

But what of Incrediboy?  No doubt this will be hard on him and he will be understandably upset and angry. We have come a long way with him and communication, so he has every right to communicate that he does not like this.  Where before we could skit the issue and just explain away absences with “she is out” and “she will be back later”, he now can discern between a short trip and long which is a good thing developmentally but not so good for long time changes. The hard part is that he will have no choice, like so many other things in life. That is the truly hard part of all this is explaining to an autism child that life will not be fair all the time but we have to do things so the ones we love can grow and flourish. 

And that was where I stopped back in September.  Turned out I was worrying for nothing and Incrediboy handled it quite well. He cried the first couple of nights but once he realized she has coming back every weekend, he was fine with it. “I’ll miss you” he said her whenever she left and “I missed you” when she came back. Even after the Christmas holidays, he was able to accept her going back to school. Although he did go to Increditeen, give her a hug and told her “Don’t cry because you are going to school. I will see you Friday.”

Another year of hoping for the best and maybe, just maybe, less setting expectations because there is still wonder and there is always hope.

The Countries of The World, from One Citizen

 

Ask Incrediboy to identify a country’s flag from a field of flags. Any country. I dare you.  I warn you, however, that you’d better be certain, because he knows them all.  After a busy day of school and daycare and ABA therapy, he’d rushed over to the toy drawer that held his art supplies and started pulling out coloured cardboard, because he needed (not wanted) to make some flags.

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The flags you see  in the photo are Japan, North Korea and Brazil. When Incrediboy was telling me what shapes and colours we needed to make the flag for North Korea, I tried correcting him, but he was insistent. I finally resorted to Google to resolve the dispute, and had to admit that my six year old son was right, and I was wrong (I had been picturing the flag for South Korea in my mind.) How many six year olds can draw flags from memory? How many adults can do so?

Flags, countries and nationalities are Incrediboy’s current “hobby”. It’s been fun with World Cup going on, as flags are being sold on nearly every street corner and cars are adorned with the occupants’ country of choice.  A long car trip was much easier with Incrediboy gazing out at the passing cars, calling out the flags on the cars as they whizzed by.

I wondered, at first, if this was just another form of perseveration, the mind’s inability to move from one task to the next, which is often a challenge for those on the spectrum, or those with other neurological disorders. Maybe this “hyperfocus” on countries is just a passing fancy, and soon another youtube video will trigger a new fascination.  It’s perhaps too soon to tell,  but I am enjoying it for now.

It’s a nice break from all things Hot Wheels, Avengers or Spiderman, because this is a sign of him looking outward at the world.  Recognizing the symbols of a flag, and connecting it to a country and its people, and (just recently) it’s language.  Flags are a concrete concept, but countries and nationalities, when you are one small person of six years of age, is a pretty big abstraction.  The world is a big place, and that can be frightening, but if you can get to know it better and  know your place in it, then maybe you can find your way through.

Especially if you’ve already figured out the map function on your mom’s phone 🙂

Baking and Incrediboy

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Let me start out this culinary based entry by saying that we do not have Incrediboy on a gluten free diet or any other restrictions. He has never shown any signs of being affected by gluten or the lack of it and he continues to make progress in his speech, behaviour and social skills. I know that some people swear by it for their child with autism and if it works, great. I am not going to say what another parent should be doing for their child.

I cannot remember the specific day or event when Incrediboy first expressed an interest in baking with me.  I know it was during the time that it was hard for me to find something that we could actually do together. After all, he didn’t play with his toys at this point beyond lining them up.  He wasn’t interested in bikes or watching movies or even having a story read to him so the possibility of spending time to bond with him was remote.

I remember that I was making cookies and bringing out the ingredients. He was quite young at this point, around 3 years old I would guess, and still not all that verbal.  He came up to me as I was making things around and pointed at the jar in my hand.

“Sugar?” He asked.

“No. That is Flour.” I said taking his hand away before he scooped a handful into his mouth.

“Flour.” He pointed at another jar, “Sugar?”

“No that is Baking Powder.” I said noticing a theme here and moved a jar closer. “This is sugar.”

“Sugar!” he exclaimed happily.

We went on through the ingredients, with him repeating after me each ingredient. He had his favourites of course. Brown sugar and chocolate chips always got a reaction from him and I learned that giving him a small amount to eat or pouring extra in expecting some to disappear was a simple way to go.  Yes I let him eat sugar and chocolate chips from the bowl. Put me down as a bad dad and I will go to the special hell gladly.

He stayed with me and we made cookies together. He seems to enjoy the measuring and the mixing the most, in fact to this day he still tends to disappear when I put them into the oven. I guess that part is boring to him.  I was very glad to have something that we could do together and have quality time. It was the activity that I expected Incrediboy to like the least. I figured too many steps and measuring would not appeal to him. That is the funny thing about Incrediboy though, he often does the things you least expect.

I have so many fond memories of cooking and baking with my daughter (Increditeen) as she was growing up.  It is good to be able to go through that again with the son I feared would never share those experiences.  In the face of autism, it can seem very daunting to find a common ground to share with your child. I am not a “throw the ball around” type and neither is he, so that avenue is closed to us. He has so far not been able to sit through a movie, although I keep hoping.

So we bake. Sometimes we have a lot of cupcakes in the house or cookies, but I take them to work and no one seems to mind eating them. I have a recipe for cookies that is called “I want to marry you” cookies but I think of it as Incrediboy’s cookies now as it is his favourite to make. I like to think that with the measuring, following of recipes and step by step instructions, that I am helping him learn skills that will help him in life as he gets older. At least he will know how to make cookies that may make women ask him to marry him.

He’s my little brother, now stop asking!

I assume you guys have already figured out that this is Increditeen talking. When it was first confirmed that Incrediboy had autism, I will admit that I was very reluctant to tell anyone about it. Not because I was embarrassed or ashamed; I didn’t want people to judge my little brother just because he was different. I only told my close friends as I figured they deserved some warning of what it could be like when they came to the house. I also told my teachers as I discovered that sometimes it is very hard to study or focus in class when I am worried about what’s going on with my brother. I found it was just easier to warn them ahead of time that sometimes I get distracted (it won’t be that often) instead while they are going off into lecture mode.

During my third year of high school, I had taken sociology in my second term. We were given a project to study neurological disorders in young children. I had already told this teacher about my brother so she had specifically asked me to discuss autism and suggested I make a small video about Incrediboy. I was extremely reluctant but after some encouragement from some friends, my parents and my project partner, I ended up doing the short video. I braced myself for the worst but instead of judgment, my video was received with squeals of how adorable my little brother was (and still is). I was relieved and mentally smacked myself for being so worried over nothing.

That’s when my classmates got very curious. We had a big project, coming up, which was worth 30% of our final mark. We were supposed to find a topic and create a big presentation on it, and they wondered: would I choose the topic of autism? I explained (politely) that I had already chosen the topic of dreams and nightmares. When I was asked: “Why not?” I answered that we already had a project on autism so it would be silly to repeat the topic. The topic was dropped and I got over my worries about telling others about my little brother.

Then, this year, I took sociology again and this time the curriculum was more focused on families and relationships within the family. I enjoyed the class immensely but as soon as it was brought up that there would be another major project, all my classmates, who remembered my project from the previous year, started asking me the dreaded question: was I going to do my project on autism? I told them no, I had already had chosen the topic of domestic violence. For most of my classmates, this was a good reason and left the topic alone. For one girl (I shall call her Squid for now), this wasn’t a valid excuse. For about two weeks, Squid would ask me over and over again to do my project on autism or as she kept putting it: “Why aren’t you doing the study on your brother?”

Let’s just say by the end of the week, I was half tempted to start hissing like a cat at her to make her go away (and I am not just being funny, it was a strong urge to hiss as a warning to BACK OFF). Finally in a last ditch attempt, Squid and I had this little conversation.

Squid: So what topic are you doing, Increditeen?

Me: I already told you, I am doing Domestic Violence

Squid: But wouldn’t it to be easier to do Autism? I mean you have your little brother! You practically already have your homework done already!

Me: Squid, all children with autism are unique. I am not going to have all the answers by watching Incrediboy and I have already told the teacher I am doing Domestic Violence.

Squid: But you could still switch!

Bells rings

Me: But I’m not going to. Bye Squid, have a good day.

To be truly honest, I had to resist the urge to be a lot ruder in my response. So here is my more honest and straight from the heart responses to these questions.

Will I ever do a research, a study or a project about Autism?  

Maybe, if I felt like it.

What about your brother?

Just because my brother has autism, doesn’t mean I will only be interested in that topic. I have a lot of other interests and there are many interesting topics in this world

Don’t you want to do it for him?

I doubt a project for school is actually going to help him. He needs therapy, not paper work.

Wouldn’t it be easier to use your brother for these projects?

My adorable little brother loves to play with cars and is incredibly smart. He seems to believe that if anything belongs to me, it must be way better than his own toys and would happily jump on me whenever he finds me asleep in my bed or on the couch. Incrediboy is my brother, not an experiment, not a project and not a specimen under a microscope.

Now, can you please stop asking?

 

It’s Not Rocket Science, or Maybe It Is

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One of Incrediboy’s favourite places to go is the Ontario Science Centre.  He knows it quite well; in fact he could really do the tours if he was so inclined. It is a good place to go if you have a child with autism as it is very visual and hands on.

They have a train, Gertrude by name, in the Science Arcade. Incrediboy always wants to visit the train. Nearby is an exhibit with a air jet pointing up and beach balls so you can try to balance the ball in the air stream and make them float.  Now when he first came in contact with this exhibit, there were a group of teen boys attempting to toss the ball into the airstream and get it to balance. They could not do it. Iincrediboy watched the entire time, never moving, never saying anything but fascinated by the airstream and the balls. You could almost feel the wheels turning in his mind as he observed and learned by watching others. When the boys gave up, he got the ball, went to the airstream, stared at it for awhile and then placed the ball gently into the airstream and let go. It rose up and floated perfectly and he was quite pleased with himself. He did it several times with a grand expression of joy and then we moved on back to visiting Gertrude.

I have seen this in him many times since. The ability to watch, observe, figure out something and then do it. Every time it makes him very happy and makes me very proud. He is a very smart boy, and he surprises people sometimes who forget that or do not expect it.

So on Monday after Easter, I take him to the Science Centre. There is the airstream again and a boy is trying to balance two balls in the single stream. He gets them up in the air a few times but they always hit each other and fly off.  Incrediboy watches, fascinated, while waiting for a turn. When he does, he grabs both balls and I almost made the mistake of telling him it wasn’t possible. Almost, but I stop myself because I really don’t want to tell him anything is impossible.

He puts the first ball in and watches it rise. As soon as it reaches the peak of its height, he then gently puts the second ball into the stream. It goes up and … well what do you know? You can balance two balls in an air stream. He figured out that it would only work when the first ball was at the peak, and then the next ball will not hit the first. He got this by watching another boy fail at trying. He was very pleased with himself too, proclaiming out loud to me “I got two balls to fly, Dad! Two balls are flying!”

It makes me wonder what goes on in his mind sometimes. I wish I could hear the process happening, although I am sure that I wouldn’t understand it. He sees the world with a different perspective than me, and I am sure that the world needs a few more perspectives.

This brings me to another thing I noticed while at the Science Centre. Incrediboy will attempt to socialize with other kids his age now. He says “Hi” and “My name is William, what’s yours?” When he does this, many boys will not reply to him and look at him like he has broken some major rule of social engagement.  They stare at him, look to their parents and then move away. Yet when he says hello to a girl his age, they react with shock like “OMG this boy is talking to me! ” And they generally respond pleasantly. They are generally more accepting of his peculiarities and seem genuinely pleased that he made an attempt at being social. Is that a base difference between boys and girls? I don’t think so, but I believe that behaviour is learned.

Now, I am not trying to paint the world black here based on kids’ reactions to Incrediboy at the Science Centre. He has friends and is very caring about those who let him into their world. When he came to an exhibit that asked what names you thought would be good for newly discovered moons, Incrediboy stopped and carefully entered in the names of all his friends from school. Made sure he spelled each one correctly too, but didn’t want to enter his own name until last.

So here is my son watching a ball in air and figuring out the rules to do what he wants, and the rules work. Here he is watching people interact and figuring out how it is done and  … it doesn’t work, but it does, but it doesn’t.  No wonder he gets confused.  Physics is easy, it is people that are difficult.

Pretty Letters All In a Row

Incredimom here to share with you the story of the picture decorating our Blog – all those pretty letters all in a row. At times, I’ve loved this photo, and at other times, I hated and feared it, for what I thought it represented.

It was September 2011, and Incrediboy was on the verge of starting school (half day of junior kindergarten). We’d gotten a package of foam numbers and letters for the little guy, and he loved to play with them in the bath, in the living room, everywhere.  When he managed to arrange them in alphabetical order, we were so pleased and proud of our smart little boy – so ready for school! We took the picture, posted it on Facebook, and thought very little of it.  Looking back, though, I think I looked at it as reassurance that everything was fine, and we were worrying for nothing.

We’d been worrying for so long about the elephant in the room. Our serious little guy had always been fairly quiet, but then again, so was his father, Incredidad. “He doesn’t talk much,” we’d tell the doctor, and the problem was attributed to the near constant fluid in his ears from the constant ear infections. Two sets of tubes and several rounds of speech therapy later, he had perfect hearing (just try whispering “ice cream” from another floor of the house) and an expanding vocabulary, but something still wasn’t right. It was the SLP at Toronto Preschool Speech and Language that gently suggested that we have Incrediboy assessed for developmental issues, as his behaviour was still atypical.  This was in early 2010. After several false starts and a few wrong steps waiting for the public system to grind Incrediboy up to the top of the assessment waitlist (another post for another day), we paid for a private assessment, and just before Christmas 2011, we received the diagnosis of Autism Spectrum Disorder.

By then, I had already begun to read everything I could on autism, and man, was it frightening! I was learning a whole new language, and looking at Incrediboy under a microscope. Now his affection for letters wasn’t cute or a sign of cleverness (after all, he hated to have us try to read to him), it was, much like the lining up of toys, a repetitive and restrictive behaviour, and therefore, wrong.  We were supposed to discourage that, the books said, and break him of that habit and “make” him play with toys “appropriately”.  I was so frustrated – I thought he was playing appropriately! Now this picture would make me wince whenever I saw it.

The problem with reading everything you can on a subject is that, without a guide, it can be hard to separate the sound from the debunked. Theories abound on the causes of autism (early ones blamed the mother, of course) and there are nearly as many treatments for autism as there are theories. We were fortunate enough to attend a conference in June 2012 featuring Jonathan Alderson, who encouraged us all to challenge the myths of autism. If a child shows a strong interest in something to the exclusion of anything else, why take it away, he asked. Why not use it as a bridge to learning? Why not take that hyper-focus and introduce new skills and new ideas at the same time?

And that’s what we did. We looked for numbers and letters while out shopping with Incrediboy, and we played alphabet games. He’d learned some sign language during speech therapy, so we sang and signed the alphabet together.  He wouldn’t hold a pen, put he liked to put his hand over mine while I drew letters, so we’d do that over and over again, until that hand on mine was directing the motion.  We moved from letters to words, using flash cards, and today, he is sounding out new words, and reading at his age level.

Now I can look at that photograph and remember the pride I felt while taking it. He IS a clever boy, and while we’ve had some challenges to overcome with school, he is more than ready to be there. With apologies to Sigmund Freud, sometimes a cigar is just a cigar, and sometimes a pretty row of letters is simply a pretty row of letters.

Hard to Write a Blog with Bitter Fingers

There is an interesting thing that happens when one becomes a parent of autism. You discover that the medical system is two tiered based on money and that very few people in the medical profession actually care about people. It is not really their fault, most are burned out, over worked and attacked daily by people like me who want services for our children and they have to tell us there is a two year long wait. Much like yelling at the cashier because the drug store sold out of Tide, it isn’t them who make the rules, who take the funding away or hire the professional. But we yell at them anyway because if we didn’t we’d explode.

This blog is not here for to spread bitterness, resentment or anger. We wanted to share some of the stories behind the facebook status that seem to enchant our friends so much. We want to share the positive moments that make us want to run cheering through the streets but that is frowned upon – especially at 3 am in the morning. I won’t lie to you; sometimes the bitterness will slip out. So if you see me slipping up and ranting away at the establishment – my safe word is cookie. That’s right = just ask me if I need a cookie. I’ll get the point.

So I am in Harvey’s yesterday with Incrediboy who is in a good mood and is feeling chatty. I asked him how his day was,

“Good. I made a picture of Angry Birds Stars Wars II.”

“Great. Did you play with your friends?”

“Yes. I didn’t hit anyone and I didn’t swear. I only said good words today.”

Of course that was enough to make people stare at me. That’s fine. I’ve been stared at before. Yes, my son swears like a truck driver when he gets frustrated and angry. He is dealing with it which I think says a lot for his progress. I know adults that can’t go five minutes without the f-word and people can’t seem to tweet without it.

“Well that is good. I like to hear you are being good at school.”

“I say only good words today and keep my hands to myself. I am a big boy.”

“Yes you are. Good for you for trying hard.”

Now, if you have children with autism, you know what this means. We have conversation (YAY!). We have express of goals (YAY!) and expression of a desire to be acknowledged for trying hard and succeeding (SUPER YAY!). Given all that, the stares don’t matter. I used to think people stare at us because of the autism but I have come to the conclusion that people stare because your child is making noise – make them stop!!!!! Doesn’t matter if it is happy and clear noise, just shut them up.

So Incrediboy sees a list of sauces available for order posted on the glass. He likes lists. This may be an autism thing but frankly, I like lists too so who am I to judge what is what.

“Ketchup, Mustard, Mayo, Hot sauce, and bbq sauce.” He reads outloud.  Yes, he read spontaneously (YAY!).

“Very good.” I say as I stop him from peeling the label off the glass. Rome wasn’t built in a day and Incrediboy loves lists to come home with him.

So his burger comes and he rushes to the glass. I normally order for him but he says clearly, “I would please like lettuce and ketchup and mustard. Thank you. I don’t want hot sauce cause it would hurt my tummy.”

I stifle a laugh and smile. The lady behind the counter doesn’t smile but looks to me for translation. It seems pretty clear to me but oh well.

So there is a day in the life of Incrediboy. Typical? Not really. He is right now communicating more clearly and more frequently but every day is different and we have bad days as well as good. Bad days don’t make me want to run to the computer and write them down but these moments are the ones that keep me going, keep my hopes alive and make me smile. Frankly, I can’t think of a better reason to share them than that.

So we begin.

I have often said that raising a child with autism is a lot like raising a child with super powers. They don’t see things as we do, they don’t hear, smell or taste as we do. They often have little control over their motor skills, but if you can somehow teach them control, they just might save the world. Take Ma and Pa Kent, raising a young super Clark who must have found his hearing and vision overwhelming. I would be sure that they, on occasion, likely often said in any autism household, wondering aloud, “How did he get that on the ceiling?” or “he did what with what? Is that even possible?”

Autism is a neurological disorder that causes sensory perception to be wildly different from that of a neurotypical child (that means normal but to say your child is not normal is not … well, normal). They can have senses that are much more sensitive than usual or have problems getting their senses to work at all. What would you do if suddenly you could not feel your hands? You might flap them around? Hand flapping is a common symptom of autism. What would you do if every sound came to you as loud as if your Ipod was on full blast? Cover your ears? If that didn’t work you might bang your head in frustration or shout out in anguish. But no one else hears it like you do so you are just having a tantrum in a public place for no reason. Would that be hard to deal with? Now imagine it every day, every minute of your life. Not sure I could deal with it, how about you? That child in the store wailing away as if the world is ending – might just actually feel like it is and he cannot turn it off or shut it off or make it stop.

Autism is a Spectrum disorder (ASD mean Autism Spectrum Disorder). As a spectrum disorder it means that there are so many variations of symptoms and manifestations that doctors have to and rule out before delivering a diagnosis. There is no blood test, no early screening before birth – and they have no real idea what causes it or why. I have my own theory but that paranoid conspiracy will have to wait for another post) There is a saying in the ASD community that if you have met one child with autism, then you have met just one. No two children are alike or exhibit the exact same symptoms. The characteristics of symptoms are categorized under Socialization, Behavioural and Communication (I will not list the symptoms here, but for examples see http://www.autism-society.org/about-autism/symptoms). The severity of the disorder can range anywhere from mild to severe. Conditions like Epilepsy and low Serotonin levels are often hand in hand with autism.

The last I heard, autism was now occurring in 1 out of 68 children. It really doesn’t matter what the number is – it is getting worse every year. Getting help for your child with autism is not easy. We have waited a year just to get him into his first therapy program. It would have taken us two years to get the assessment done so we could be on the waiting list for programs. We didn’t wait the two years of course, we ended up paying to have an assessment done, but that isn’t an option for everyone. The cost of a private assessment is $2500-$5000 on average. I have heard of some people cashing out twice that amount too. If you want to skip the line and go privately for therapy, they you are looking at an estimated $20-$70k per year. Yes, there are a lot of people making a lot of money off autism. Oh, by the way, the Ontario government funding to help you with that is no longer available but there is a waiting list you can join if you want to see if it gets renewed one day.

There are many types of therapies and programs for Autism but the only one that the Ontario government will fund is called ABA (Applied Behavioural Application). It is an operant conditioning method based on training ASD kids to respond through a series of rewards. It has a 50% success rate as not every child responds to it. There is also speech therapy (More than Words) to help increase verbal responses and occupational therapy to help with gross/fine motor skills. Some combine all disciplines and teach it to the parents because we are with them the most (IMPACT).  There are some that work on a change in diet (gluten/casein-free), some that work on massage and pressure points and even hug therapy. I am not going to say which is best and which isn’t because – all children with autism are different. If something works for someone else, who am I to say they are wrong? There are success stories of children learning to deal with their autism and so much so that they appear to be neurotypical to most. Some claim cured but that is not true, at this point no one is cured, but they can learn to cope, and learn to embrace their differences.

My son, Incrediboy as we call him here, has autism and is on the mild end of the spectrum. We are happy to say that every year we have more progress with him. He has private therapy that we pay for, and that just started recently. He is verbal now, starting to socialize and is dealing with his autism. He is only five so we have a long way to go, but we have come a long way already.

We (My wife and I, with our daughter on occasion) are started this blog with the intentions of writing a series of informative notes on various topics that would help raise awareness and express some of our thoughts on the challenges. We also want to sometimes tell the story behind the facebook posts. I cannot promise any consistency in posting but we shall try.There will be plenty of information and awareness posted today by others, and I encourage you to read an article or three. If you have a question, feel free to ask, if you are on a similar journey, feel free to reach out.