Archive | February, 2012

Opinions

By on February 28, 2012 in Autism

My 13-year-old son Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfect normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex, who has autism, presses three (not our floor) and nine (our floor). “Alex, press five, please.”
“Noooo!” he says. “Alex, press five.” “Noooo!”

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

“Noooo!”

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though, because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please…  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting plain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

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Autism Study of the Month: Co-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders

By on February 22, 2012 in Autism Study of the Month

autism magnetsCo-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders

Source: http://pediatrics.aappublications.org/content/129/2/e305.abstract?sid=17b1810d-43f8-4c01-aff1-94a64941a94b

Abstract

OBJECTIVE: This study aimed to investigate descriptive characteristics and co-occurring neurodevelopmental and psychiatric conditions in young children, children, and adolescents with a current and consistent or past but not current (PBNC) diagnosis of autism spectrum disorder (ASD) and how such characteristics and conditions may engender a change in diagnosis of an ASD.

METHODS: Cross-sectional data of 1366 children with a parent-reported current or PBNC ASD diagnosis were obtained from the National Survey of Children’s Health 2007 data set across 3 developmental stages: young children (aged 3–5 years), children (aged 6–11 years), and adolescents (aged 12–17 years). Multinomial logistic regression was used to examine demographic characteristics and co-occurring conditions that differentiate the groups with a current ASD from groups with a PBNC ASD.

RESULTS: Results indicated the co-occurring conditions that distinguish groups currently diagnosed with an ASD from groups with a PBNC ASD diagnosis. In young children, current moderate/severe learning disability, and current moderate/severe developmental delay; in children, past speech problem, current moderate/severe anxiety, and past hearing problem; and in adolescents, current moderate/severe speech problem, current mild seizure/epilepsy, and past hearing problem.

CONCLUSIONS: These findings suggest that the presence of co-occurring psychiatric and neurodevelopmental conditions are associated with a change in ASD diagnosis. Questions remain as to whether changes in diagnosis of an ASD are due to true etiologic differences or shifts in diagnostic determination.

Translation

They studied differing age groups of children that were previously diagnosed with autism and found that some of them no longer fit the criteria for a diagnosis.

By the way, PBNC means Past But Not Current… as in, they had the diagnosis but now they do not.

What they do not know is why. Is it because they “grew out of it” or because they’re simply able to “fake it” now as they’ve grown and learned or is it something else?

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

Now, the big problem with studies like this is the the amount of questions is brings up but obvious lack of answers. These types of scenarios tend to leave a lot open to the imagination and the media will simply eat that right up.

Some examples:

Can some children simply ‘grow out’ of autism? One mother tells how her son’s life has been transformed

Autism: Can it be outgrown?

These articles are full of assumptions right out of the gate.. dangerous assumptions. It’s one thing to give parents false hope when it’s possible there is none but it’s another to give them license to just do nothing. You see, while this certainly doesn’t say that all children will grow out of it, it does raise the question in some people’s minds… which may lead them to just leave it up to fate… chance… God. Which ever. They can now stop trying to improve their child’s life because if it’s meant to be… they’ll just grow out of it!

For all we know, it could be that the data they used before was faulty, perhaps many of those children were wrongly diagnosed…. perhaps these doctors are much better (or worse) at recognizing autism symptoms than the doctors that previously diagnosed the children?

We just don’t know. And therefore, to throw around statements such as the one in this news piece is very presumptuous and further more, dangerous.

In my opinion, you have to remember that autism is diagnosed by doctors that observe behaviors in a person. This means that these children truly can learn how to do the things that they couldn’t before, some of those things being criteria based symptoms that define autism. In other words, maybe a child masters the repetitive behaviors, the speech problems and continue to have other struggles in their lives. This would meant that they would no longer fit the criteria for an autism diagnosis and yet, they still very clearly have autism.

Then there truly are those that are misdiagnosed to begin with. There are possible reasons… for example, out growing may very well be a possible reason. But there are also other very likely possible reasons.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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Do what you need to do, I won’t sue

By on February 16, 2012 in Autism, Parenting

I often hear horror stories in the news, from other teachers and all over the internet about parents being in some epic battle with their child’s school or day care because their child had to be restrained, separated from others or other cases like that.

Most of the time, everyone sides with the parent in a unanimous cry of outrage in the complete and total mistreatment of their child. Most of the time, that comes with very little information as the schools are often unable to comment on the situation, same with any enforcement personnel. This means that we only have the parent’s information to go on.

I won’t argue however that most of the time, that’s all we really need. What’s wrong is wrong.

Still though, this creates a situation in society that basically ties the hands of those teachers and care givers should they truly have the right or need to handle a situation where those circumstances arise.

Dear care givers

What I’m trying to say is, if you care for my child and he is in danger of hurting himself or someone else, please do restrain him. Please do send him for a time out, even to some other room if need be.

I won’t sue. I won’t call the media.

If my son hurts himself… in a private area… please do check it out. He’s hurt, he needs attention, give it to him. I understand that it’s not sexual, I understand that you have his and my best interests at heart.

I won’t sue. I won’t call the media.

But be warned

If my trust is abused or my understanding is taken advantage of, I will hunt down the person and make sure that no one finds them until skyscrapers start going up in remote parts of northern Canada.

My children are that important to me… but they’re also that important to me that I don’t want to see his care givers afraid to touch them for fear of me being the type of parent to make it a national news story.

time out chairThe reality

The reality is that when my son completely loses it and hurts himself or his little brother, or is breaking things, or is just generally out of control… I will put him in his room. I will drag him there if I have to.

And I fully understand… no, I expect… that anyone else that I have entrusted with the responsibility of watching him would do the same.

I won’t call it barbarism when someone does the exact same thing that I would have done in the same situation. I won’t give my story to the first reporter that will listen to me.

The reality is that I understand how it’s come to this but I also feel disappointed that it has.

Somewhere, lines have blurred… and it’s often due to those who take advantage of the situation or react too harshly to the situation. Those care givers who go overboard and actually hit a child, or do something else that is completely inappropriate.

There’s also the “not knowing” that we must face… since our children aren’t great at relaying the details, we have to just hope that the teacher’s telling the truth. And if they did do something wrong, what would be the likelihood of that?

In a perfect society, every person that comes into contact with a child would be certified do-gooders with halos and wings that could never do any harm… but there is no perfect society and that leaves us skeptical and scared.

But I refuse to hand cuff those who care for my children by never letting them do what I would do myself to ensure their safety.

If I wouldn’t do it, damn straight I won’t let them do it. But if I would take an action, such as dragging my kid, kicking and screaming to a time out… then I fully support his teachers/care givers doing the same.

I know a lot of parents won’t agree with me, or simply aren’t willing to let “strangers” do those sorts of things… I can understand that. But it is how I am and how I feel about it. If I don’t trust the person that my son is with, he won’t be with that person. It’s that simple.

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If you believe in yourself, the magic will happen

By on February 15, 2012 in Autism, Parenting

In 2007, a wonderfully fun little movie called Mr. Magorium’s Wonder Emporium came out featuring Dustin Hoffman, Natalie Portman and Justin Bateman. While this movie will never hold a candle to films such as the Wizard of Oz or Willy Wonka and the Chocolate Factory, it does shine in it’s own special way.

Dustin_Hoffman_in_Mr._Magoriums_Wonder_Emporium_Wallpaper_3_800

Just Believe

The Premise

Dustin Hoffman plays the magical being, Mr. Magorium… and by magical, I mean that he’s 243 years old and brings toys to life. His assistant is played by Natalie Portman who is struggling to find herself. She tells Mr. Magorium that she “feels stuck” and he responds by giving her the Congreve Cube… uh… a block of wood.

As you get accustomed to the magical world within the store, Mr. Magorium throws in a shocker in announcing that he has to leave… effectively, he’s going to die tomorrow.

This leaves her with a store that she’s not sure she wants, an accountant that hasn’t even seen a toy in years and a fun little boy sidekick type that is in the peak of his magic believing life.

The Magic

It’s a wonderfully fun movie for the kids… Cameron was mesmerized through most of it but did get bored a few times as the discussions about life would take away from the store and the magic.

But that was the thing, I think, in that this movie held so much more magic for the parents than it did for the children. I think that is what holds it back from being a classic like Oz or Willy Wonka but it’s also what makes it so important for parents to watch.

You see, as Mr. Magorium “leaves” and his assistant has to figure out her life, the store begins to lose it’s colour, the toys stop coming to life… essentially, it dies. It becomes a dark, dreary place that no one wants to step foot into.

It’s not until Molly (Natalie Portman’s character) realizes what it is that she has to do that everything comes back to life. She believes in the magic, she believes in the toys, she believes in the store and most of all, she believes in herself again… and the Congreve Cube begins to move.

It’s her belief that causes the cube to move, it’s her belief that brings back the colour and it’s her belief that leads the viewer to believe that, providing she always does believe, she too will live to be over 240 years old.

The Lesson

As Molly dances around the store and the toys begin to move, dance and fly, the colours come back, the music builds and builds and the children come running in the front door to see all of the magic, my son sat on the couch, hugging the couch cushion with a huge smile on his face.

I love to see him being so happy that he can hardly contain it. It’s a rarity.

So I decided to see if Cameron got it:

Me: So what did she have to do to make the magic come back?

Cameron: …  believe?

Me: Right! …  And what did she have to believe in?

Cameron: … magic?

Me: Nope… herself! She had to believe in herself!

Cameron: believe in herself?

Me: Yes, that means that she had to be happy being her. She had to know that she was smart and a good person. She had to know how awesome she is!

Cameron: and that makes the magic?

Me: Exactly. If you believe in yourself, the magic will happen.

While I don’t know just how much of that will stay with him, I know that it will stay with me. And I hope it stays with every parent that watches the movie.

Never stop believing in make believe. Never stop believing in silly, childish, wild and wacky fun. Never stop believing in magic. And most importantly, never stop believing in yourself.

It’s this that I will always remind my boys and will always do my utmost best to remind myself.

Autism or not, if you believe in yourself, the magic will happen.

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Birthday parties, autistics, parents and choices

By on February 9, 2012 in Autism

While many parents feel a great deal of pain in accepting the reality of a birthday party-less life for their autistic child, I have found that there are in fact some parents, a small number, that just don’t seem to get it.

The usual problem


birthday partyThe problem that most autism parents face is isolation… that feeling you get when your child is never invited to birthday parties. The parent feels this through osmosis, meaning, they feel isolated because their child feels isolated. They know that the question is coming one day: “Mom/Dad, how come I never get invited to birthday parties?”

It’s a terrible feeling, and not just because it is saddening, but it’s also maddening. Because deep down, you know the reason. In fact, in a way, you probably don’t even want your child to go to those birthday parties. So loud, so bright, so much excitement, socializing, awkwardness…. yes, for many children with autism, it’s far more a nightmare than a dream and yet… the child doesn’t know that. They just know, or one day will know, that they are missing out on a world of fun.

And so, as a parent, you are left with a twisted up stomach, knowing your child feels alone, knowing your child feels like they’re always left behind, knowing that one day your child will ask you and knowing that one day, you’ll have to answer.

The unusual problem

In my son’s (Cameron) case, we don’t have the usual problem because of the great school that he attends. He is in a “regular school” but they have dedicated 5 classrooms to children with autism, which means that his friends all have autism as well.

So when his friends have a birthday party, he’s invited. Or when he has a birthday party, he has friends to invite. It’s actually pretty awesome in many respects because, not only are they not missing out, but they’re gaining those valuable party skills that they’ll need in college (hey, I can dream, can’t I?).

Here’s the thing… even though the other kids in all of those 5 classes have autism, not all of their parents really “get it”. What I mean is, they don’t realize how lucky they are to have their kids going to birthday parties.

The problem that I face, is whether or not to invite certain other autism children from those classrooms. They’re the ones that easily meltdown, easily get aggressive, have little verbal ability…  you have to understand, they’re great kids and I love to see them when I stop in at the school, but it’s obvious that they will need some extra help and attention at a place like a birthday party.

What I expect, and this is probably where I am going wrong, is that their parents would understand this and do something as simple as… stick around. You know, go to the party and be there with their child to help out should a meltdown occur, to say to me “oh, don’t do that because my child doesn’t like that” or “my child can’t eat that”…  stuff like that. I don’t mind changing things up on the fly, I’m an autism parent too!

But they don’t do that. They leave.

And to be fair, I’m not talking about the parents who honestly and truly have something they need to do, like work. But the ones who see it as a break…. a chance to be free.

It’s not a chance to be free. It’s a chance to learn valuable socialization skills. It’s a chance to do something that many other children with autism can not. And this parent is taking it for granted. They’re taking advantage of it.

What to do?

So at my son’s next birthday party, I have a choice to make.

Do I invite that child even though I know that things could be… well, let’s just say, more of a struggle?

Should the child miss out because of their parent? Should the child be punished? Or, would it be more of a punishment to actually invite the child to a place that he/she won’t be able to cope with? I mean, if I don’t invite the child, the child stays home with their parents, where they’re comfortable and at ease, right?

I’m not really sure what the right answer is… all I know is that it would be so much easier if the parent just took it more seriously. If the parent would see it for what it is.

To those parents:

Don’t make me have to choose whether or not to invite your child just because you can’t be bothered to stick around.

Birthday parties aren’t the same for you or I, compared to “other parents”. Not for the person throwing the party nor for the parent of the child that is invited.

I’m sorry that it’s not happy, fun, break time for you like it is for other parents. But that doesn’t mean that it can’t be a really great time.

You need to step up.

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