The simple request my son made that I’ll never forget

By on February 9, 2011 in Autism

My son had a really rough night last night, and tough day today as well with the flu. I’ll spare you the gory details, let’s just say that we didn’t get much sleep and he didn’t eat anything today.

As the day unfolded, I continually went over in my head the next blog post that I would make about how he has never been the “sucky” type when sick, quite the contrary. He tends to just shut down, get mellow and do nothing all day. Sometimes we don’t even know he’s sick except that he’s not doing anything.

But as I prepared my boys for bed, something trumped all of that. The hours and hours I had been writing and rewriting in my head were gone in an instant and replaced with what I am writing right now. I was that surprised by it.

I am one of the very fortunate parents that does get regular hugs and kisses from his children, even though one of them has Autism. Rather than what you would call a “regular” hug and kiss though, I get them in patterns. I wrote about it here. This has become a part of our nightly routine… get them a small glass of chocolate soy milk, read a story or watch a later episode of Cat in the Hat and then off to bed, hugs, kisses and goodnight.

Tonight, because Cameron has the flu, I had to say no. Cameron stood up in his bed and said “don’t forget hugs and kisses!” and I had to say no.. not tonight. It’s most likely that he’s shared it with the family already but it’s still not wise to take the chance so I had to tell him that being sick means getting no hugs and kisses.

His arms dropped to his sides and he said “can I touch you? please? hold my hand?”

At that moment, anything else I had planned to write faded away. I had to write about this. But I never did come up with adequate words to express exactly how hearing those words made me feel.

Honestly… I had no idea just how important that was to him. For all the parents out there that seldom or even never get that kind of physical contact, here was my son pleading with me to not be denied it.

I took his hand, told him make sure he doesn’t breath on me… and pulled him up for a giant sized bear hug.

Flu or not. I’ll never deny him a hug again.

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This is how my son shows compassion in an Autistic way

By on February 6, 2011 in Autism

When Cameron was 1, we took him to McDonalds because that’s just what parents do… children love that place, right? Well, it proved to be a complete fail. We didn’t even know he had Autism then but he knew it… he refused to eat anything they had and refused to join in with the other children in the Play Place. He enjoyed watching the other children play but didn’t really get in there.

We didn’t take him back for a long time after that… until his younger brother was old enough.

Fast forward a few years, Cameron is now 5 and his little brother (Tyler) is 3 and we felt it would be a good time to give it another try. Suffice to say, this time it went far better. We brought food for Cameron, Tyler will eat just about anything there. And they both played in the Play Place. They had a blast!

Yesterday we went again and while they played, I noticed a boy back inside the restaurant with his mom… his name is Jack. He was in Cameron’s class last year but not this year. He was also the one boy that Cameron identified with most last year.

Jack is almost double Cameron’s age, and quite a bright child but also what you would consider lower functioning. I was unsure whether or not they’d even allow it but I went back into the restaurant to say hi and mention that Cameron would love it if Jack would come play with him in the Play Place.

They got up and came in with us… Cameron was so very happy to see him. But they were so awkward looking… like they didn’t even know how to say hi to each other.

It was very obvious that the loud, echo filled, brightly coloured, children filled room was too much for Jack as he paced back and forth on his tip toes and flapping his arms… his mother was not concerned. I asked if he’s ok as he passed by, he said yes and kept going…

What impressed me most was that Cameron stopped going into the slides to play… he stayed with Jack. He didn’t talk to Jack, he didn’t pace… he just sort of hung around and waited.

When Jack felt ready, he approached Cameron and together they both when inside and popped out at the bottom of a slide together. Jack went straight back to stimming… Cameron went right back to waiting.

I was so very proud of my boy. He didn’t ask if he was ok, or try to console him, he didn’t even approach him… but he waited.

Again, Jack was ready and off they went and appeared down the slide once again. This time Jack had a great smile on his face as he went back to stimming.

Tyler went with them when they went but he didn’t stick around to wait. He was up and down those slides while Cameron waited.

Boys in a bubble

Boys in a bubble

All 3 of them ended up at the end of one of the tunnels at one point, together. I got a picture but all you can see is Jack’s red sweater.

As it came time to go, I left feeling very proud of Cameron. He was extremely shy about me approaching Jack, he was extremely shy about saying hi and he was extremely shy about talking to Jack when Jack was clearly needing to take some time to himself.

But he was patient and he was there for him. He didn’t leave Jack behind, he didn’t give up on him.

Cameron talked about Jack the rest of the day. He was just so very happy that Jack was there. Even though it meant only going back into the thing 3 times when he could have done so much more… he was just so happy to have a friend with him.

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The follow through. When disciplining, stick to your guns

By on February 3, 2011 in Autism

One of the more challenging things to do is discipline your children… book stores and libraries could fill entire sections just with books on the subject, there’s just so many opinions, methods, taboos and other topics to be aware of.

The one aspect that almost all agree on, and is also the most tricky to accomplish, is following through with your threats.

For example, my boys would not go to sleep once in bed… I can’t keep separating them, I can’t let them stay up late and make life harder for their teachers at school due to them being over tired… what do I do?

Well, I certainly can’t threaten them with much in the here and now… it’s bed time, they have pj’s on, they’re in bed. What can I take away? What kind of time out could I give them?

The most obvious thing to do is to threaten to take away something they like for the next day… in my boy’s case, television, video games, treats… it’s different for every child as every child has something different they really love.

What ever it is that you decide upon, you must follow through. It doesn’t matter if you threaten to take away their favourite hat or their will to live.. what ever it is, you better stand firm on that the next day and remind them what you said, what they did and why you have no choice but to take it away.

All children are smart, all children are clever… they will learn very quickly what an empty threat is if you make one. If you threaten to take away treats the next day, you better do it.. no matter what happens that next day.

In the case of a child with Autism, it’s doubly true because depending on how exactly Autism affects your child (everyone is different), there’s a good chance that the one time that you cave, will be the one and only time that is retained with any clarity. What I am trying to say is, they’ll forget the 6 times you held firm and remember the 1 time you didn’t.

As you can imagine, something like that would make all future threats of discipline a very futile task, and they’ll tell you that too. “Go to sleep or I’ll take away tv all day tomorrow.” will be met with “No! No taking away tv tomorrow! I will watch tv so there!”

You don’t have to be ruthless, you don’t have to threaten to take away much really… so long as you stick to your guns. If you say it, you had better mean it. Because if you have no intention on following through, you’ll only be making things harder for yourself from there on out.

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Dr. Paul Offit answered my question this week-end

By on January 31, 2011 in Autism, Autism vs Vaccines

Dr. Paul Offit did an interview with the fine folks over at the Thinking Person’s Guide to Autism this week-end. In preparation, they asked people on Twitter if they had any questions they’d like answered. I have lots, but one in particular that weighed on my mind, so I asked it… as did they… and he answered!

Earlier this month, I wrote a post making official my stance on the whole vaccine – autism thing going on that you may have heard of… in it, I made a very bold statement. In fact, I wrote it in bold.

The way I see it, if they can pump out a newer and better cell phone every 3 months, they can have new and better vaccines as well.

vaccinesI often read sites that list out the ingredients in vaccines, most don’t know what those ingredients really are… they just know that they sound like something else bad that they’ve heard of before and so… they must be bad too.

The one thing that struck me, however, was that the ingredients don’t seem to change from site to site… from writing to writing. Which got me to wondering whether or not they ever do change.

We all know that thimerosal was removed from most of the vaccines in 1991 (UK) and 1998 (US) but other than that, what else has been done?

If you’ve already clicked through to their site, as I’ve linked it above, you’ve probably already read it but for those that haven’t, here is my question along with his answer:

Are vaccines constantly upgraded and monitored for safety and efficacy?

Yes, like no other medical product, including all the drugs you put into your body and certainly more than anything you’d get at the General Nutrition Center. We have a very well-tested, well-worn vaccine schedule.

It’s not a huge answer nor is it very detailed… but I think it answers my question nicely and, with any luck, put some people’s concerns to rest.

I believe it’s very very important for parents to know that the vaccines that they introduced in 1940 are likely not the same vaccines they’re giving today. They’ve been modified, tested, modified, tested, remodified, tested and so on and so forth ensuring it’s as safe as they can possibly get it.

Because let’s be honest, if it was still the same ole same ole from 60 years ago, we’d all be even more scared than we already are.

Plus, he has a point. A drug that is released these days is released as is… with a laundry list of side effects. And so long as it’s up to code, even with those side effects, it never changes. It just continues to be used as it is. Perhaps an extra strength or new type will be released but that’s it.

Quite frankly, that scares me… their continual work on the vaccines is a comforting thought. So for what it’s worth to you, now you know, as do I.

Paul A. Offit, M.D., is an American pediatrician specializing in infectious diseases and an expert on vaccines, immunology, and virology. He is the co-inventor of a rotavirus vaccine that has been credited with saving hundreds of lives every day. Offit is the Maurice R. Hilleman Professor of Vaccinology, Professor of Pediatrics at the University of Pennsylvania, Chief of the Division of Infectious Diseases, and the Director of the Vaccine Education Center at The Children’s Hospital of Philadelphia. He has been a member of the Centers for Disease Control (CDC) Advisory Committee on Immunization Practices.

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Life is the key to decyphering Autism

By on January 26, 2011 in Autism, Autism Communication

A “cipher (or cypher)” is essentially a scrambled up message that requires a “key” to unscramble it. For example, if you used 1-26 instead of a-z to write out a message. You’d take that long list of numbers, change the numbers back to the letters they represent and presto, you’d have a readable message.

The reason I’m explaining this is that there’s a stage in Autism where a person goes from non-verbal to being very cryptic to being a person capable of appropriate conversations. Sometimes this “stage” happens in childhood, sometimes it’s adulthood, sometimes it’s for a year and sometimes it’s for many years.

What happens is that a person with Autism will likely think very differently than most “normal” people but not really realize that there is a difference. Therefore what they imagine is happening, or their ability (or lack there of) to explain it, often ends up in something that sounds like some sort of code and often leaves us parents having to crack it.

The good news is that we have the tools to do it. The bad news is that we’re the only ones with the tools to do it because the key to cracking the cipher is that person’s life.

I’ll give you two examples of what I mean, the first happened just tonight.

Cameron has been having it particularly rough the last couple of weeks, outbursts, crying fits, general bad behavior… so finally, tonight, I sat him down and had a talk with him.

  • Me: Cameron, what is going on? We need to stop and talk… we need to find out why you are doing more bad things than good things.
  • Cameron: …
  • Me: Does your tummy hurt? Does your head hurt? Are you sad because we changed your bedroom? Are you sad because a teacher left your class?
  • Cameron: When I do bad things… when… bad stuff… I have bad things dancing around in my head.
  • Me: You have bad things dancing around in your head? What do you mean? What bad things?
  • Cameron: bad things like… hitting… and pushing… and cutting…
  • Me: Those things dance around in your head?
  • Cameron: ya… and I can’t get them out.
  • Me: Who is doing the hitting and pushing and cutting in your head?
  • Cameron: <names another child at school>… he cuts… the teachers…
  • Me: I see, he does these things in your head?
  • Cameron: Ya… and I can’t get them out.

So at bed time, while putting on his PJ’s, I talk to him about it again.

  • Me: So what do you think we should do about these bad things dancing around in your head?
  • Cameron: We have to cut them out.
  • Me: Well, we can’t just cut things out of your head.
  • Cameron: Ya.. we have to make a hole… and cut them out and put it back again.
  • Me: Sorry buddy, but it doesn’t work that way.
  • Cameron: Why?
  • Me: It’s just not that easy. We can’t cut you and take ideas out of your head. We have to find another way.
  • Me: What do you do with food that you don’t like?
  • Cameron: Throw it in the garbage.
  • Me: So what can you do if it’s bad ideas dancing in your head that you don’t like.
  • Cameron: Throw it in the garbage!!
  • Me: And what is left if you throw the bad ideas in the garbage?
  • Cameron: …. uhmm.. good ideas?
  • Me: Right. Do you think that would work?
  • Cameron: Ya!!!

Do I think that will work? Who knows. On some movie set or episode of Dr. Phil maybe… but it’s a start. At least I have a good idea now that the actions of his lower functioning class mate are starting to wear on him. This gives me, and his teachers something to work with.

And it fits because this is very very similar to the outbursts we had with him when he first started school over a year and a half ago. He didn’t feel safe. Now it’s happening again.

My second example (I didn’t forget) was when his teachers wrote in his journal that he was complaining about a strange noise in his head. Again, close to bed time, I talked to him about it. He described it as a strange noise in his head, that he couldn’t stop and couldn’t get out.

After some world class interrogation skills and deductive reasoning on my part (ya right), I was able to determine that the “noise” was mooing and it was part of a song that he liked but hadn’t heard in a while. A line or two from that song was stuck in his head, playing over and over again. He didn’t know what song and couldn’t make it stop. We’ve all had that happen before!

So again, both examples show that not many people could have figured out what exactly was going on in that marvellously complex mind of his because you need the key to unscramble the messages… and that key is his life.

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