Archive | January, 2011

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

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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What you say and what they hear may not be the same thing

I’ve noticed for quite some time how my children often repeat what they hear in a movie or television show but what they say isn’t an exactly copy.

For example, in the Cars movie, one character says “What? did I forget to wipe my mud flaps?” to which Cameron immediately parrots “I think I wipe my butt wraps”.

Another instance is in a Mario Brothers game where Mario cries “help’a me!” and Cameron laughs and says “trampoline!”

There are many many examples I could give. This has been a common thing for him all of his speaking life but I never saw much point in blogging about until a mom on Twitter (@Calormom) commented that her son never answered the question “How was school today?”

Unfortunately, I don’t talk to very many parents that get an answer to the school question. Not very many children with Autism ever answer it.

This mom said that she had asked a teacher from the school and the teacher said that it’s likely that her son doesn’t understand her, or the question or just doesn’t want to answer.

This got her thinking and rather sad that her son doesn’t understand her. Understandable… I felt the same when Cameron would never tell me about his day too.


Did he say what he heard?

Keeping in mind his strange inability to say what he had just heard from the television, I got to wondering what he might be hearing when I am talking to him. If I talk at regular speed about mud flaps… is he hearing “butt wraps” ??

Here is what I did when I realized that he wasn’t properly interpreting what it was that I was saying.

  1. Consciously slow down your talking.
    In the day and age of instant messaging, texting and so forth, we have even begun to talk faster without realizing it. Many of us really aren’t that good at it either. We slur things together, we abbreviate words we shouldn’t and we mumble stuff out more often than we realize.
  2. This brings me to speaking more clearly.
    I’ve had a few family members tell me how “funny” or “strange” I sound sometimes… which is sad because I’m sounding the way that an English speaking person is supposed to sound. However, our language has become so perverted these days, in the words we use and the way we say them, that people look at you strange for speaking properly and clearly.
    So be it, let them laugh… your child will understand you better… that is what is important.
  3. Try rephrasing the question.
    Children only have a limited vocabulary as it is, so don’t expect them to understand every word you say… and certainly combinations of words might throw them off as well even if they know what the words mean individually. If you ask what they did in class, but they only know of the place they go to as school… they might not have an answer for you.
  4. Talking about school, use words/phrases that the school uses.
    My son’s class has story time, but they don’t call it story time. They call it circle time. If I ask him what they did for story time, he will have no idea what I’m talking about. If he’s feeling confident, he may tell me that he didn’t have story time… even though he did have circle time.. but most likely, especially having Autism, that confidence will not be there and he’ll just have no answer for me at all.
  5. Emotions are an easier memory to recall than facts.
    My son has come a long way so now he can recall facts much better than when we first started but consider this… he can tell me every detail about what happened in a story or movie at school, but can’t tell me what the title was or who was in it.
    The reason he can do that is that he’s mostly recalling his emotions… how exciting the story was, how sad it was, how happy he felt… and those emotions have trapped the story within them.
    When Cameron first began talking, I would ask what story his teacher read, or what movie he saw and be met with a blank look..  he didn’t feel comfortable telling me that he didn’t know. However, if I asked if they had a good story for circle time, he’d answer yes or no. From there, I could prod for more information because I had him talking.
  6. Like all things, start slow.
    “How was your day?” is far too broad and confusing. Start with something like “did you do numbers today?” or “did you eat your lunch?”
    Yes or No questions are a great place to start and as I said, use words/phrases the child already knows. The less confused they are, the more likely they’ll talk. In time they’ll become accustomed to the questions and the type of information that you’re looking for. That’s when your child will start to catch on that “how was your day?” is just another way of asking all of those questions at once… but they have to work their way up to that point.

Don’t be discouraged if your child doesn’t understand you… they haven’t understood you for their entire lives, but they’re learning. This is no different. Also, it happens with all children, just maybe not to the same extent as a child with Autism.

You just have to keep all of these things in your mind, remember not to get frustrated when you don’t get an answer and to understand what may be going through your child’s mind.

Your child loves you and does want to tell you… they just need a little help from you.

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He has become self aware

Ok so my son isn’t a robot, but he does have some challenges that differ him from many other children, namely, Autism.

My two boys share the same bedroom which presents certain problems around bedtime. They tend to talk or play rather than go to sleep. This can be a bit of a problem when Cameron has school the next day. Like all children, he needs his sleep, but as a child with Autism, he needs it that much more or else his stimming and meltdown tendencies may become much more evident the next day.

In the past, I’ve separated them by putting one boy in my bed (mom’s bed, as they call it). I alternate between the boys so that they feel it’s fair but really, this is not the best solution. We can’t keep doing this until they get separate rooms, can we? What if I want to go to bed early?

Finally, one night, I decided to take on the discipline route… putting X’s on their behaviour chart, threatening to take something away. Finally, after being awake 2 hours later than their bed time (this was not a school night so I wasn’t hugely worried)… I said “that’s it… no video games and no television all day tomorrow!”

Sadly, this sounds like more of a punishment for my wife and I but ultimately it was a good thing. They needed a reminder that they have a lot of things they can do besides video games and television anyway, and it is also what would hurt the most.

So the entire next day, they moped around but found other things to do as they were supposed to. They even got a treat just before bed, since they handled their day so well, they got to watch Cat in the Hat on tv for 30 mins before bed.

The next day things were back to normal, and come bed time, I asked Cameron “Do you want to sleep in your bed tonight? Remember though, if you talk and play instead of going to sleep, you get no video games or tv tomorrow.”

Cameron thought about it for a little while, like… really thought about it… and said “uhmm… maybe I can sleep in mom’s bed tonight?”

Wow. Did he seriously just figure that one out on his own? I mean, he must have realized that in his room, he would be far too tempted to talk and play. In all that serious thinking he did, he must have realized that if he was in his bed, there’s no way he’d be able to resist the temptation to play.

Rather than risk it, he opted for the separation right from the start. Not just opted for it, but suggested it. I didn’t even include that as an option in my question.. I implied that it was an option by asking, but didn’t make it an option for a very specific reason.

The reason I titled this article “He has become self aware” is because this has been a big focus for me… to have him recognize upcoming hazards and avoid them by suggesting something better. Stop and think about your own child that has Autism and question how often this happens.. it’s really not an easy thing to do when your mind is so focused on the “here and now”.

As with many things in my blog, this is only a first step and certainly not going to dictate his actions/thoughts for his life but this is a great first step, I think. He’s become aware of his limitations and suggested a course of action to get the results he desires.

Good job Cameron!

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Let me just make one thing very clear…

Let’s talk about vaccines for a minute. It’s not my favourite topic because I feel it’s the one topic that breaks apart the Autism community when we really should be standing up together and supporting each other.

First and foremost let me say, no, I do not believe that vaccines cause Autism. That does not mean that I do not think that there could be situations where a vaccination could trigger an already pre-existing condition (like Autism for example) which would cause a regression.

Do I think vaccines are perfectly safe? No, of course not. Not even their inventors and marketers think they’re perfectly safe. Everyone knows there is a certain % of people that have adverse reactions, allergic reactions, side effects and sometimes, even cause death.

Do I think that the recent Wakefield news means anything in regards to the vaccine risks? No. They simply proved that he lied, fabricated his evidence and findings. It doesn’t prove anything about what vaccines do or do not do though, just that his findings didn’t prove anything one way or another.

I have said since day one that if you have concerns, ask your doctor a million questions and demand a schedule that you feel more comfortable with but please please please do not deny vaccinations entirely.

Here’s the thing, this is where I think that things have gone wrong:

  1. People forget what these illnesses can do and what they’re like.
    Most of them don’t sound so bad, most of them many people had as children themselves and again, weren’t so bad. But you’re remembering and thinking of a very small piece of an entirely much larger picture. These simply “cough and get over it” illnesses do kill people! Some disfigure, some kill.. some simply clog the medical community with thousands upon hundreds of thousands of hospital visits.
  2. People think that an all but gone illness can’t come back.
    If it’s not gone, it can come back. In fact, that’s the very nature of these illnesses in the first place… to spread! It’s particularly ironic in a country like the US where most people complain about the immigration rates that they’d possibly think that an illness that still inhabits other countries could never actually find their way back in.
  3. People forget that there are babies, elderly and other lower immunity tolerance people out there.
    Yes, measles as a kid is rough, but in a senior citizen? Deadly. Whooping cough means a hospital visit for most people, it means almost certain death for a baby. When you or I talk about the illnesses these vaccines prevent, we picture ourselves and our children but in reality, much like the flu, it can kill people that are less equipped to fight it off.

Listen, without vaccines, I believe that by now, we’d probably be seeing a word wide population decrease at this point, rather than our continuing increase.  If nothing else, we’d certainly have far less medical resources to be keeping us healthy. I mean, think about it… how bad is health care where you are?? How bad would it be if a few million people every year were in there with all these diseases that are preventable?

Do I promote getting vaccines? Yes.
Do I also promote safe vaccine schedules? Yes.
Do I promote more research into all of the dangers of vaccines? Yes.
Do I promote more research into finding better and safer ingredients to be used in vaccines? Yes!

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.

Don’t ever make the mistake of thinking that I am happy with the way things are… or that I think a certain % of vaccine injuries or deaths is just acceptable. The numbers can always be improved!

But don’t ever think that I am supposed to be out there inciting fear, panic and further division within the Autism community. That simply is not my goal. I understand if it’s not yours either but let’s be honest, many who do hate vaccines, and vaccine makers, do push the boundaries too far. They want others to share in their hatred. They want others to take up a pitchfork and fight along side them.

I am not that person.

Ask for a safer schedule, petition to have more research and safer vaccines created. But never think that not preventing many illnesses is a good way to maybe lower the risk of Autism.

Stop listening to Wakefield, stop listening to anti-vaccination people, stop listening to conspiracy theorists, stop listening to pharmaceutical companies, stop listening to marketers, stop listening to pro-vaccination people… stop listening to me!

Use some common sense, use some rational thinking… do your research, do your reading. Look at the numbers, look at the history. Ask yourself, if it’s all a risk, if it’s all about choosing from bad and bad, why would you opt for denying what you know will be prevented?

Option A prevents X, Y, Z and may cause Q
Option B prevents nothing, so you may get X, Y, Z and still may cause Q anyway
Which makes more sense??

My wife suggested that I make my blog’s tagline “using common sense”… because I pride myself in doing just that. That’s all that I see in this matter, is to use common sense.

Fight for safer vaccines. Fight for a safer schedule. Fight for more safety with our children!!

But never forget that safer actually means taking the vaccines. It does save lives.

This is my official stance on vaccines. I know it’s a hot topic, I know not everyone will agree. Please do not get mad if you don’t. Everyone is entitled to their opinions and as such, I would never think poorly of you for yours. We need to support each other in pushing for the discovery of the true cause, a way to help those that have Autism and for more resources in schools, work, housing and more. Let’s work together.

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The scariest part of going grocery shopping with our son

Today my wife took my boys shopping for groceries and as always, it can be tiring keeping an eye on them, answering all their questions, stopping them from running around, from grabbing/touching everything and so on and so forth.

But what proved to be, and continues to be the most difficult aspect is the parking lot. It’s also the scariest.

parking lot

Danger everywhere

The parking lot is scary enough just because children are children… they don’t recognize the dangers as well, they aren’t as aware of their surroundings as well, they simply aren’t in control of themselves as well.

What makes it so much worse for a child with #Autism is that they lack the ability to focus and to maintain disciplined motor skills.

A parking lot presents a lot of stimulation to overwhelm a young child’s mind, with people everywhere, cars either moving or sitting still, lights, the weather, not knowing where to go, the smells… plus, many children see it as a big area to play in.

For a child with Autism, it can overwhelm them just as much as any area inside the store except that a parking lot has a lot more dangers.

While walking towards the store, my wife had both of my boys holding onto the cart that she had grabbed, this way they’re always close. However, as a truck slowly crawled up along side them, Cameron still did what he often does when excited and overwhelmed… he walked with his arms flailing wildly at his sides and took steps as if the ground was wavering beneath him.

As the truck was nearly beyond them, he took one step wider to the side than normal, as if falling over.. my wife yanked him back quickly because if she hadn’t, his foot would have been run over by the truck’s back tire.

Imagine, you’re doing everything right with keeping your children close, they have a hand on the cart, you’re watching everything and in less than a second, a single wild step could mean a trip to the hospital, or worse.

Often when people talk about grocery shopping with child that has Autism, the discussion focuses around meltdowns, over stimulation and other parents being judgmental. Really though, we need to recognize and remember that getting in and out of the store is the most dangerous part and needs to be handled with care.

Here are some tips, that we’ve learned through trial and error, on getting through the parking lot safely.

  1. Grab a cart as soon as you can after leaving your vehicle. Then:
    a. Put your child(ren) in the cart for a fun bumpy ride.
    b. Put your child(ren) between you and the handle, so that your arms are around them. Let them push the cart to help out, but keep your hands on theirs or at least on the handle
    c. Make sure your children are making contact with the cart at all times so that, even if something unexpected does happen, you’re at least close enough to make a quick reaction.
  2. If you have no cart, keep your child between you and the parked cars so that the cars in motion are along side you, not them.
  3. Don’t take no for an answer. Children with Autism will be very reluctant to hold your hand but that’s just too bad. Do it anyway. Better a meltdown in the store than an accident in the parking lot.

My son was almost hurt today and my wife did everything right… in fact, it’s a good thing she did or else he very likely would have been injured.

The less your child is capable of focusing, the more you have to! Be aware at all times, do the things you need to do at all times. The consequences of a single moment in time that you let it slide could be too unbearable to think about.

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