Knock knock

By on March 15, 2012 in Autism

I am simply amazed at how Mike has improved in social situations. Take last night for example. We went to Applebee’s to celebrate my brother-in-law’s 50th birthday; a table for 20. Applebee’s, like so many other restaurants is a busy, noisy place with big screen TVs all around and lots of clapping, happy-birthday-singing wait staff scurrying in all directions. A perfect place for a melt-down if ever there was one, and he’s had a few there in years past. I sat next to Mike, who sat next to one of his uncles; this put us near the center of this large gathering. Throughout the night Michael made many attempts to tell his newly acquired Knock-Knock Jokes:

Mike: Can I make you laugh?
Uncle Rob: Sure.
Mike: Knock knock…
Uncle Rob: Who’s there?
Mike: Jamaica
Uncle Rob: Jamaica who?
Mike: Jamaica me crazy!

Now, I know that he was surrounded by family, who know more about Autism and developmental disabilities than most, and that Mike may simply be repeating a pleasurable activity, but I see how he interacts with others, and amazed at how this compares to his lack of interaction with others just a few years ago. Fortunately or not, Mike has a younger cousin with developmental disabilities. I bring this up only to highlight in my mind and in the minds of many members of our family how far Mike has come, and it is Mike’s development that gives us and our extended family hope for the future.

He proceeded to tell this joke and another to his younger cousin as well.

Later in the evening, he accidentally spilled a glass of milk on the table, which eventually spilled on to both his brother’s and my lap. “Dad, I am so sorry. I can’t believe how clumsy I am!” His reaction and intonation were so spot on; properly emphasizing the word ‘so’. There was no anxiety, nor any withdrawal from the situattion.

I give a lot of credit to his school, the Rosemary Kennedy Center in Bellmore, NY, where he’s attended the last two and a half years, and his socialization class on Saturdays at Helping Hands Behavioral Outreach in Melville, NY where he’s been going for 5 years. Both have been instrumental in teaching and modeling appropriate behavior and have been models of consistency. Another factor which has helped him progress is his language; he is able to build upon his vocabulary. I am convinced that his ability to communicate verbally will be the only determining factor in how far he can go in school and life.

Mind you, this is only a step along the way. We still have to remind Mike to say hello and goodbye to others oftentimes, but I am confident that he’ll master those independently one day. In the meantime, when told to say goodnight at the end of the dinner, he promptly turned to the restaurant crowd, waved, and said, “Goodbye everyone!”

The kid knows how to make an exit and an impression.

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What the r-word means until it means something to you

By on March 7, 2012 in Special Needs

To those who do not understand what the problem is with the “r-word”:

The r-word…  retard. It’s a funny little slang word that can be used to describe so many things, situations….  people. It’s a word that’s causally thrown around, used without thinking about it…  it doesn’t really mean anything.

Right?

Perhaps, if you do not have anyone in your family that has a disability or special need… it really doesn’t mean much to you. And so you don’t get it. Why do people make such a big deal about it? Why do so many people get so upset about a word that you don’t even give a second thought to?

Well, let’s fast forward a few years, actually, a lot of years and let’s say you’re now approaching your 80’s. You have children, grand children and loved ones beyond that. And then you have a stroke and in an instant… a large portion of your brain function is no longer available to you. You’re still smart, you still remember everything, you still love everyone… but now you struggle to say the things you’re thinking, you struggle to use your hands with precision…. you simply… struggle.

How would it feel if your children started calling you a retard? Your grandchildren? Ok, maybe not directly, but let’s put it this way…

One day you try to pick up a glass of water, it slips and crashes to the floor. A short while later in the day, you grandchild goes to pick up their plate, drops it and it smashes to the floor. Out of frustration, that grandchild says to themself: “Ugh, I’m such a retard sometimes!”

Ouch.

Perhaps that’s too far off, let’s put yourself a little closer to your present self as say… 20 years off from now, where you’re now a working and capable adult and your child has just been born into the world of limitless possibilities and wonder.

And then the doctor informs you that there have been complications. It’s nothing you did, it’s nothing they did… it’s just one of those things, right?

Something strange happens from that point on, where you begin to see your child as a determined fighter, a winner, an against all odds victor over anything that the world can throw at them and you love them so much more for it. It wasn’t one complication… it was a life long complication that has only made you and your child stronger.

Over time, you start to realize that the strange thing that I referred to earlier is actually that your perception is no longer that of your friends….

Where they still see a disability, you see strength.
Where they see failure, you see success.
Where they see retard… you see your child.

One day you try to get your child into a nice school in the neighborhood but they turn you away. They can’t accommodate your child and your child’s needs. Another parent is getting their child into the same school and asks why “that other parent and kid were turned away?”, the administrator tells them that your child has special needs and can’t be accepted. The kid, thinking you can’t hear, says “he wants to bring his disabled kid to this school? That’s retarded.”

Ouch.

The world hasn’t changed, you have. Now, instead of not giving that word a second thought… you do give it a second, third and fourth thought as it hurts you to the core.

It now means more to you than you ever thought it could… more than you ever thought it should.

And you speak up, and those kids don’t get you… they don’t understand why you’re making such a big deal about a word that they’ve never given a second thought and in that instant, you see yourself in those kids. You see what you were missing.

So perhaps it doesn’t matter right now, perhaps it’s just a funny silly little word… but some day it will hurt. It will hurt a lot.

Whether it’s you, your child, grand child, cousin…  friend… it doesn’t matter. One day you’ll hear someone use that word and it will hit close to home and it will bother you. It will bother you a lot.

It’s not a funny silly little word. It’s a stereotype. It’s a label. It’s a knife in the heart. And not to a stranger… to someone close to you, maybe even yourself.

You didn’t even give it a second thought.

Click the image below to learn even more and to get involved… let’s help people to understand what it really means when you use the r-word.

end the r-word

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Sleeping with autism

By on March 5, 2012 in Autism

By the title, you’d probably be expecting a post on how some children with autism struggle to sleep through the night or what techniques people use to get more consistent sleeping patterns… actually, this post isn’t about that.

Actually, what I do want to write about is something a bit unexpected, not a huge surprise but certainly wonderful. See, if you were to check in on my boys right now (at night), you’d see that they’re both crammed into one single little bed, asleep together.

Don’t want to sleep alone

My boys have always slept in the dark, in the quiet and on their own. We’ve never used night lights or anything and so they’ve never had any issues with needs or fears. They just go to bed at bed time and that’s that.

However, recently, my little one (Tyler, 4) has been asking that he have someone sleep with him. Usually me but sometimes my wife. It’s not because he’s scared… he just wants us with him.

Now, these are small beds… I don’t fit in one when I’m by myself, much less with a child beside me.

So there has been a couple of times that I’ve laid with him, usually I can’t because I have other things to do and then some other times I just won’t because I don’t want him becoming dependent on that sort of thing happening every night.

Autism and Empathy

Cameron and Tyler

Cameron and Tyler

This is where his big brother, Cameron (6 with autism) comes in.

The other night, I went to check on them and they were both crammed into Tyler’s bed. It wasn’t pretty. Neither one of them stays still for long in their sleep.

The next day, I asked him why he was in Tyler’s bed and he said “I just wanted to make Tyler happy.”

Now, there are strange rumours and beliefs by some people that people with autism, especially children, lack empathy. Meaning that they can’t understand how others feels, don’t identify with them and most absurdly… don’t care. This is obviously not true. I mean, not always… there certainly can be times that they won’t understand or even care, just like anyone, but when you add it all up, it’s not true that autistics are completely incapable of it.

This was certainly a great testament to that… Cameron, wanting to make his little brother happy, got out of bed and climbed in with Tyler so that he could have someone to sleep with.

They don’t do it often, thankfully, but when Tyler is really upset about it, Cameron goes on over and hops into Tyler’s bed. How can I get upset about that?

It’s awesome!

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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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