Tag Archives | school

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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The public vs private school debate. Has everyone forgotten it’s a spectrum?

By on January 18, 2011 in Autism

There has been a lot of talk lately, due to news stories coming out, about the pros and cons of having children with Autism pushed out there into public schools or secluded away into private schools. Quite frankly, I’m surprised this is even a debate.

Here is my question for all involved… how can you possibly debate one or the other when what we need is both?

Autism is a general term encompassing a spectrum of disorders in a variety of levels of severity… you know this, I know this… these people debating should know it.. right?

If you are debating this topic at a political or journalistic level, please listen to me very carefully.

We need both!

Children that are newly diagnosed likely need the extra hand holding… a child that is so severely low functioning that they’re unable to speak or be toilet trained, they should probably not be in a public school. No, I don’t think the parent has to choose between an institution and home schooling either. A school should be an option… an OPTION. They should not be forced into school and they should not be forced to send their defenceless child to what will likely be a very difficult and cruel time at public school.

Conversely, a child that is speaking, rather intelligent and capable of maintaining at least one friendship at a time will likely benefit from being in a public school. Here, their social skills are put to the test as well as their intellect… also, if they’re high functioning, they won’t be subject to the lesser desired behaviours of the lower functioning children around them in an all Autism school.

A spectrum of children with a spectrum of functioning levels requires a spectrum of solutions… not ‘a solution.‘

There is never one solution for all children when Autism is involved.

I understand there is seldom the money available when having to choose which services will get which funding but I’m afraid you don’t get to choose… there really is not a choice. Parents need both because our children need both.

This is where we need to step it up to another level beyond Autism Awareness and institute a policy of Autism Understanding and Acceptance.

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How do you feel about seclusion versus inclusion schools or programs?

By on September 3, 2010 in Autism

There’s been some debate over whether or not a child with Autism is better off in a classroom with other Autistic children or if they’re better off in a classroom of NT (NeuroTypical) children… the obvious answer is, why not both?

I guess I am just spoiled (or my son is) in that his school will offer an hour or two of ‘integration’ time where my son gets to join a class of children his age where the ‘normal’ children are. He tends to sit quietly to himself, I could only imagine how difficult it would be when I think back to my childhood, but it is a good experience for him. Even if all he does is observe, it’s educational. If it didn’t benefit him, I could simply tell them to stop and they would. It’s great when a school listens to the parents!

The problem is that not everyone has a school that is that flexible. Most schools don’t even have a mix where you get that option. You’re either in with other Autistics or you’re not and that’s that. If that’s the case, you’re left having to choose.

My advice to you, as it is with every parent of every child in every situation, stop expecting someone else to do what you need them to do. If your child is in a classroom with only Autistic children, then take the time (make the time if you have to) and get your child out to a park or play centre as much as you possibly can and give them that hour or two ‘integration’ time yourself.

As parents, we stretch our time pretty thin but you know what? If you had an expert at time management step in and help you out, you’d find that you have a lot more time available to you than you think. And even if you don’t, make it! This is your child we’re talking about and no one anywhere ever will give your child everything they need no matter how much you want it.

I had to sell my house and lose just about everything to find this school for him. So no, I’m not spoiled. I deserve it, my son deserves it and we did what we had to do to get it. And when he gets home, we still go to visit family and friends, parks, the beach and other places he enjoys so he can play with more children.

If your child is secluded and you don’t like it? It’s your fault. If your child is included and you don’t like it? It’s your fault. If you can raise such a loud voice as to shake the foundations of the town in which you live because you’re so outraged that they’re not doing what your child needs… why can’t you put that energy into doing something about it yourself?

Your child is not second best and so you shouldn’t settle for second best. You and your child need those schools and programs but you know what? They’re not there to do everything for you.

Get involved in making the changes required and more importantly, get involved with your child. Make the time if there is none. Because in the end, years later, if things don’t turn out how you wanted, there will be no one to blame but yourself.

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Educating The Educators

By on May 26, 2010 in Autism

The title sounds a bit harsh, I don’t mean to undermine the experts, doctors or teachers… but I do want to emphasize one thing rather clearly, you know your child better than they do. They know generalities, sciences and the history more than you do but they don’t know your child. This means that in some cases, you do know better and in some cases, you need to explain some things.

I would like to give an example and I hope I don’t offend anyone, they did nothing wrong, it’s just that this was a situation where we, as the parents, had to step in and explain how our child was unique.

We are very fortunate to have found an extremely wonderful school for our son, where the entire bottom floor is dedicated to Autistic children. This means that different rules apply there, such as peanuts… they’re allowed on that floor, since many children have special diets and in some cases, some nuts are actually therapeutic.  We sold our house at a moment’s notice, moved over 8 hours away and had some rough times but we were determined to make sure that our son was in this school and it turned out to be a great decision.

At the age of 4, Cameron had his first full year in school where he had one teacher, 4 teacher’s aids and all the other children were also Autistic. The number of students varied through out the year but generally it was around 7 or 8. So imagine, 4 aids to 8 children plus a teacher as well. This was perfect for our son.

Prior to his schooling, we had worked very hard with Cameron to develop his speaking and education at home… when he visited his first class room, he could already count to 40 and recite his alphabet just fine. Not astounding but for an Autistic child who hadn’t said his first word by 2.5 years old, we were happy with his progress.

The problem came when his teacher and instructors were also impressed with his progress… in fact, too impressed.

For the first few months, a gradual change grew in Cameron as he’d become more and more disobedient, more prone to screaming, more violent… it just got worse and worse and we feared that he wasn’t settling into school, he was becoming less content with it.

We had been trying to talk to Cameron about what was bothering him, what was wrong but getting any child to volunteer information is rough, especially an Autistic child. Basically what it amounted to was us guessing at every possible situation and scenario we could possibly imagine until we hit it… and after several months, we did. His trigger word was “safe”.

What it boiled down to was his sense of feeling safe… once we hit the trigger word, he opened up and told us that “they don’t keep me safe” which meant, they didn’t make him feel safe.

My wife and I visited briefly one morning with his teacher who was completely understanding about it but it wasn’t until I had, in just a few minutes time, a chance to observe what was happening.

As we stood there, Cameron took one of those wooden animal puzzle boards and began placing the pieces as another little boy walked over, dumped it all out, walked to another child, knocked over their blocks, walked to another child…. and basically just disrupted everything.

No one had noticed this except for me, and no one would have ever known because Cameron just picked it back up and started over.

But what was happening was that he felt violated, unsafe… and would come home where the emotions would boil to the surface.

We discovered that, because Cameron seemingly took everything in stride and never complained about these things, the teachers and aids would either not notice, or remove the disruptive child from the situation… leaving Cameron there to be by himself, feeling quite alone, quite unsafe.

We never would have ever known without having been there for those few minutes to talk to his teacher but it all became quite clear.

After talking to them about it, they admitted that he seemed “too high functioning” to be thought of as having any problems like that. That he was so well behaved that they never imagined that he was having those feelings. And how could they? He didn’t demonstrate any problems until he got home.

Following that moment, we saw another huge change in Cameron… he settled back down, he became the happy and content child we had known previously. He felt safe again.  His teachers began to pay him more attention in those situations, to remove him from the scene (from the danger) and to make sure to always keep telling him how they’ll keep him safe.

We’ve had no problem since and the year is almost over.

Again, we’re very lucky to have found such a wonderful school for him, and we’re lucky to have such great people with him that will take our input, to not be offended that we step in like that, that do their very best in what must be an extremely difficult situation.

Personally, I couldn’t imagine what it must take to be facing many Autistic children every day, of varying levels of severity and to not only manage, to not only take care of them all but to teach them daily. It’s a huge task and one I am sure I could never do.

But despite all that, they still need the parent’s help sometimes.  They know it, I know it. It’s important that every parent knows it. Handing off your child and thinking that you finally get a break is not an option if you want what’s best for your child.

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