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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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Freeing the soul that is locked within

By on January 24, 2011 in Autism, Autism Awareness

Low functioning (severe) individuals with Autism are often referred to as being trapped in their own world or being in a body that simply doesn’t work the way it should. There is a new movie (Wretches & Jabberers) coming out that I think will illustrate this concept beautifully.

Most recently, there was a news article referring to how Autistics really do understand you even if they can not speak and you do not get a response. Honestly, Carly Fleischmann probably is the best example of this to date… a young girl that was unable to speak for most of her life until she approached a computer keyboard and began to type out full, coherent sentences.

There is a lot going on here that I think a lot of different people easily forget. Here is how I see the forgetting being broken down:

  1. Parents of children that have Autism yet are still higher functioning, or even with Aspergers, often forget that other parents have children that hurt themselves, others, have yet to be toilet trained or even speak.
  2. Individuals with Autism/Aspergers see it as a gift as well as a curse, sometimes simply as a gift.. I’ve even seen some go so far as to think they’re superior from everyone else. To these people, many times, they see no reason to do anything at all except welcome the gift for what it is. This can make some parents quite upset when their children are so bad off that they see it as nothing but a curse.
  3. Parents of the low functioning children sometimes forget that their children is likely very aware of what they say and do around them. Often talking to others as if they’re not there, when they are… getting upset at them for something beyond their control, for saying hurtful things out of frustration… they forget that they wouldn’t say these things if their child was listening… they are listening.

There are a couple of key points to all of this that I think are often missed as well, not on purpose and certainly not at all times… but from time to time, we let it slip out of our memories and thoughts.

As difficult as it is to have a special needs child, it is still just as hard or even harder to be that child.

We often get wrapped up in the stress that we forget our child is even a human being.. not literally, but figuratively. We forget their thoughts, emotions and own frustrations are in there… we don’t see it or hear it, but they’re there. They’re in a prison right there beside you and they can’t get out. You think you have it hard that they won’t give you a hug? Imagine how hard it is that they so wish they could… but can’t.

There could be brilliance struggling to get out.

I often say “No matter how severe, never underestimate a person with Autism. There could be brilliance struggling to get out.” I was corrected that I should say “is” as opposed to “could be” but again, we have to be realistic… not every person with Autism is brilliant. They are certainly wonderful, beautiful people with unlimited potential… but not everyone is brilliant, Autism or not.

But in the very least, there is an average person in there… brilliant or not, they’re amazing in their own right. Don’t expect there to be the next Einstein or Mozart in there that you have to release… they’re probably not. But they are still your children.. your perfect children.

And they don’t need the pressure of greatness pressed on them. They simply need to just be. They simply need to have your acceptance, your understanding and most of all, for you to never forget who they are. They’re in there.

This is where I feel there needs to be a cure.

Not necessarily a way to strip away Autism or even prevent it, but for right now, we need a cure to break the shell.. to let these children (and adults too!!) be able to not only speak but express emotions, function properly and become independent.

I don’t care what vaccines might do, or what living close to a highway may cause… all of those studies talk about risk. As in, percentage points. None of those studies mean that you do X and you’ll have a 0% chance of having a child with Autism. And until that does come to be, we need to be focusing on getting those low functioning individuals talking.

Cure the curse, leave the gift.

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Autism and Parties, the two don’t normally mix

By on January 21, 2011 in Autism

My youngest who is aged 7 with autism hates the thought of socialising at birthday parties and other similar events. Just the mention a friend’s birthday party invitation brings the little mite out in beads of sweat, making sure we understand that he’s not going to the party under any circumstances “send them a text now and tell them I’m not going, do it, do it now before it’s too late” is what we’ll get.

Before he was diagnosed with autism we just put it down to extreme shyness and nervousness, the hubbub of screaming kids, balloons popping and the happy birthday song were all too much, and the few parties we did attend saw us leaving early, and I mean early, usually before everyone had arrived. As it happens most people understand why he doesn’t enjoy the situation and usually left with a party bag and a balloon.Noise and Autism

The only party that I’ve seen him enjoy was a soft-play activity area, he was agitated before we arrived but once we were there settled down, maybe it was because he could crawl into a ball pit and get away from the other kids? It’s difficult to say but we were relieved that he got some enjoyment out of it.

A family get together is a completely different affair. Not so long ago he would spend the entire occasion watching TV in his bedroom and having food hand delivered on demand until it was time for bed. Now it’s a complete change around, and almost looks forward to the occasion as long as it’s been organised by one and only, going through the fine detail of the arrangements over and over again with military precision. Every detail has to be spot-on and no surprises, surprises are not welcome and don’t go down too well with most autistic children.

We’ve just come to a conclusion that children’s birthday parties are not his scene and he doesn’t feel left out or sad, in fact it’s a huge relief and does not miss them at all.

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