Tag Archives | different

If my child was a flower

glowing flowerIf my child was a flower… would he realize that he was different from the other flowers?

Would he know that he looked the same and yet didn’t fit in with the rest? Would he know that his scent was a little different from the others, that he was a little less vibrant, a little less tall and sturdy?

Would he know that even though he’s mostly the same that he’s different enough for some people to think he’s a weed?

If my child was a flower… would he wish that he could be in a flower pot by himself? Would he wish that he the other flowers didn’t seem so foreign to him?

Would he question the soil in which he lives? Would he question whether or not his water is different? Would he blame the sun?

If my child was a flower… would he hate being stuck where he is? Mixed in among the rest of the flowers, invisible yet obviously different.

Would he know that he’ll be the last one picked? Would he know that most of the other flowers don’t want him there?

Would he care?

If my child was a flower… he’d be the only flower in the group with a hidden element, a special property… the one compound that could be harvested and made into a healing agent. He’d be the only flower in the group that could help the blind to see, help the unloved to feel loved… to help the lost be found.

Will he ever be given the opportunity? Will someone love him enough to discover what is hidden deep within him?

If my child was a flower… he would be a very special flower indeed.

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The problem with the expression “Different, Not Less”

When I saw the Temple Grandin, HBO movie, I, like many other people, quickly adopted the phrase “Different, Not Less.” It’s such a powerful statement.

Completing the spectrum

Completing the Spectrum

If you’ve followed this blog for any solid amount of time, or followed me on Twitter or Facebook, you know that I’m a rather large endorser of understanding and acceptance… the idea that those with Autism can be better served by taking the time to understand them and the spectrum of Autism itself.

Early on, as I tried to piece together all of my thoughts and ideas into this “Understanding and Acceptance” campaign that has really taken off, I began to realize that there is an inherent danger in trying to “normalize” Autism too much.

Different is not special

The danger is this… different doesn’t get insurance coverage. Different doesn’t get sensory friendly movie times. Different doesn’t get services until they’re 18, much less into their adult years.

I recently wrote about the pitfalls in defining Autism which touched on this, as some parents tried to persuade me that “disorder” was too negative to use and that we should find a kinder word.

It really bothered me that these parents were essentially hindering their own chances at getting the help they so desperately needed.

Backlash against PBS and Autism Now

I’ve been reading on Twitter how some people are quite upset at the statements made during the six part series and understandably so, some statements were a tad harsh.

But at the same time, we’re trying to get the world to wake up, stand up and take notice. Not just of how great people are even though they have Autism, but also, of just how hard it can be.

Let’s be honest, a 6 part series on Autism that paints everyone as a savant, or perfectly capable independent functional part of society… won’t do much to raise proper awareness and certainly won’t go very far in helping us parents explain to other people in the grocery store why our child is having a meltdown.

It might not have painted a very pretty picture, but it wasn’t a false picture either. It just wasn’t “all encompassing” of the entire spectrum.

The Talk and Holly Robinson Peete

The Talk did a wonderful series on Autism itself, a 4 part series, airing on each Friday of the month of April. This was a very real and very honest look at Autism as well but it painted it in a nicer picture… certainly not as dark and dreary anyway.

I haven’t found much of a backlash about it, no one seemed to be upset. Which is kind of funny I guess, because I half expected that perhaps folks with severely low functioning children might.

But those people probably just felt more left out than anything, nothing really to get furious about and certainly not worth writing articles and filling up Twitter time lines about.

Personally, I like to think of The Talk’s series as a nice Yin to PBS’s Yang… if one series can’t possibly cover all sides of the Autism story completely on it’s own, then why can’t two series split the task?

The Whitehouse calls it combat

Now, if the PBS series had upset you, then how do you feel about the Whitehouse’s plan to reauthorize the “Combatting Autism Act”? Is it really war they think they’re heading into?

The legislation, first passed in 2006, tremendously expanded federal funding for autism, allocating millions of dollars to improve diagnosis, treatment and research of autism spectrum disorders.

Really, that doesn’t sound so bad… so as a suggestion to President Obama, consider changing it’s name. Please.

Conclusion

Parents and even those with Autism that are higher functioning, Aspergers for example, are trying to fast and too hard to push passed understanding and going straight into acceptance.

There’s a very real danger in doing that… those laws won’t be reauthorized, the insurance agencies will not cover any therapies or treatments and there will be no more services out there for you.

I’m not saying that there is not a need for acceptance, there is. More of it… lots more of it. However, it has to be done properly and in due course. First, there needs to be understanding.

Understanding is what makes the system work for you, not against you. People need to be aware of the stereotypes, people need to be aware of the really bad stories… because as much as we might not like how bad of a “picture it paints”, it’s not untrue.

We can’t hide away the bad stuff in an effort to force everyone to accept people with Autism as just a little different. That simply will not work.

Don’t try to call it something else. It’s a disorder. It really is, even if it sounds negative. Don’t try to hide away the stereo types of those not as fortunate as yourself…. those people need to be seen and heard, even if it’s not an accurate representation of what is in your life.

My son, Cameron, is doing just fine and I have no reason to doubt his future at all. But I’ll never sugar coat Autism just so that people will have a warmer and fuzzier feeling about it. No, what he has is a disorder… because so long as I believe it and everyone else believes it, the help that we need will be there.

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My son likes the good guys, but he just loves Rudolph and Dumbo

If you ask my son what his favourite characters are, he’d likely tell you about Mario, Woody, Buzz Lightyear and maybe even Mickey Mouse. Those are the ones he watches most often and really likes to pretend to be because they have bad guys to beat. They have someone to who’s always trying to stop them and no matter what, they have to be better than the bad guys.

Dumbo and Rudolph

Dumbo and Rudolph

Still, you’ll never see him sit with such a wide eye smile and sense of pride as when he watches movies like Rudolph the Red Nosed Reindeer or Dumbo (the flying elephant).

You see, my son is 5 years old and even though he has Autism, he doesn’t really think of himself as different, like Rudolph or Dumbo would. He goes to a special school that has normal kids on the main floor and children with Autism on the bottom floor. He has other children with Autism around him, he has teachers and helpers with him the entire time and he has never even experienced bullying or teasing.

To him, he’s just another average boy doing average things and well, pretending to be Buzz Lightyear fighting off the evil Zurg (usually played by his little brother).

I tell you this because I often try to rationalize, to myself, why it would be that he’d identify with Rudolph and Dumbo so much. Don’t get me wrong, he doesn’t talk about them too much after the initial hour or two immediately following the movie but just the way he talks about them, the look he has… the way he remembered the details after the very first time he saw them… this was so different than most movie’s he’s watched.

So if it’s not that he feels different and can relate to them, then what is it?

Well, maybe he just sees it in me… I don’t have a mirror but I’m willing to bet that I exude some sense of pride in my own inner need to relate them. To think of my son as the one that could save Christmas or become the star of the circus if he just believes in himself. Maybe he feeds off my energy.

Perhaps it’s just that he likes those types of stories, he wouldn’t be the first. I mean, they are classics for a reason. It’s certainly not unheard of that a child, or even an adult, would like the underdog stories for the sake of how good you feel at the end, when it turns out that they’re not just different, they’re special.

Or, as has been proven to me time and time again, maybe he realizes far more than I suspect he does. Maybe he does recognize his differences from his many family gatherings, trips to see other children and so forth. Maybe he realizes that when we tell him that some foods will “bo bo his tummy”, that he is likely one of very very few, maybe even the only (in his mind) person who can’t eat those things.

I don’t want to get into the topic of when to tell your child they are different or that they have Autism, that’s for another post as I’m not yet at that stage but, I do still wonder just how much he really knows.

I never dismiss anything because I never underestimate him. He’s my Rudolph. He’s my Dumbo. No matter what anyone thinks, I believe that he can accomplish anything that anyone else can and more… I’ll never stop believing it.

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When Your Child is “Too Different”, Even By Autism Standards

When Cameron was diagnosed, almost 2.5 years ago, we asked if it was Aspergers or something else and they just said “nope, it’s just Autism… he’s just on the spectrum”. They gave us the diagnosis in writing with numbers and information that made very little sense and were basically told that he is “moderate to severe”.

Later on we came to realize that, unlike most Autistics that don’t like to socialize, Cameron very much needed to socialize. In fact, he won’t even play his video games unless he has someone to play with him. He loves to have friends come over to play with him and he is always eager to share secrets and information with anyone who’ll listen. He’s what I call the anti-Autism boy. He only does things on his own when he’s overwhelmed and needs a break.

Now we come to therapy sessions where we’re told that he’s the “most inconsistent” child they’ve met… that he doesn’t like the things that every single other child they’ve dealt with does like, that he likes some things sometimes and not other times… they just don’t have any idea how to help him.

For the most part, I can’t complain too much. Cameron is a very well behaved boy, he is very smart and he has even been learning quite well how to reel back his emotions to get them under control.  However he does still have Autism. He does still need help.

It’s just frustrating not having answers… no ‘real’ diagnosis, no concrete solutions for therapy, no guarantees.

It’s funny though, if he didn’t have Autism, I think the last thing I’d want for him is to be normal, to fit the mold. I want my boys to stand out and be different. So maybe I just need to keep that perspective despite the Autism. Maybe it’s for a reason and maybe it has it’s purpose. I don’t know the future but maybe being so difficult to label is going to prove to be a good thing.

I don’t have answers but I do have hope.

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