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When one child’s autism influences another child’s autism

By on March 28, 2012 in Autism

For the most part, ABA therapy and other such systems separate the child from the world for some one on one coaching… one therapist, one child.

In many ways, this is not a very good practice when the child is having difficulty coping with social situations and they’re essentially removed from any and all social situations. It’s like trying to help a child play the piano without giving them a piano.

Still though, at the same time… there is some benefit to this. We all know how kids are, with or without autism… the phrase “monkey see, monkey do” comes to mind. Children (and certainly most adults too) are heavily influenced by their peers. When they see someone behave a certain way in a certain situation, they believe that it’s just how it is supposed to be and so they behave the same.

influenceSchool

My child is in a special school with classes dedicated to autistic children. There are now 5 classes, most around the 5-6 kids size. Which again, like ABA, has some great benefits which I love but then it also has a few problems.

Now, to be clear, these are essentially the same problems that are found in every classroom, it’s just that these can be amplified when autism is involved.

When you put 5 or 6 children together in a classroom, you find that the children will range in behaviors quite radically. Some children are completely obsessive/compulsive in certain objects or mannerisms while others seem to be all over the place. Some children are quite vocal (you know, the never stop talking kind) while others struggle to string words together at all.

In these types of situations, as you can imagine, the “monkey see, monkey do” world of peer influence can be both encouraging and discouraging.

What you find is that some parents love such a positive place where their struggling children can learn the better behaviors of his/her peers while other parents fear that their children will pick up the unwanted/not desired behaviors of some of the other children.

Friends

That’s just school… the same holds true with friends. And this is where things can get… uhmm… sticky?

As a parent of a child with special needs, we all wish for nothing more than for other parents and their children to look passed those needs and just be friends for the sake of being friends. Have play dates, birthday parties… have fun together.

You have to understand that their child, whether they have autism or not, may pick up some behaviors that may be unwanted in their house. That quirky, “it’s just an autism thing”, behavior that you tell your friend that you get used to… might not be something that they want to get used to. And they’ll be sitting there hoping upon hope that their child doesn’t pick it up from yours. They’re not afraid of autism being contagious or anything… it’s just that they know that kids will be kids.

This divide (if you can call it that) even exists in the autism community, I have found. Let’s say that you have a child that is integrating well, learning and desiring to be social and their future looks promising… and then a fellow parent in the community invites you and your child over for a play date or birthday party or something because they don’t have a lot of options, they don’t have a lot of friends and they’re hoping you and your child will be there, because you’re both in the autism community… but their child isn’t coping so well. They are easily angered, aggressive, have mannerisms or behaviors that you hope your child does not pick up…  suddenly, you’re “the other parent” that I had just described in the previous paragraph.

You’re both in the autism community so you should be far more understanding and willing to go ahead and do it but at the same time, because your child does have autism, you know they’re far more likely to pick up those behaviors and mannerisms than a child without autism would.

You find yourself understanding why other parents whose children don’t have autism are reluctant to allow their kids to play with yours… because you find yourself being in the exact same situation.

Suddenly ABA isn’t looking so bad huh?

Peers

We can’t shelter ourselves from our peers anymore than we can shelter our children from theirs. Ultimately, bad behaviors are out there and we’ve picked up some from others and our kids will most definitely pick some up from other kids.

It sure is hard though… seeing your child do something at home that you don’t like when you saw some other kid do earlier.

Autism makes it especially hard… when you see your child being that “bad influence” for others and at the same time being very likely to pick up those bad behaviors from other “bad influences”.

I use quotes because most kids aren’t bad influences. They just have some behaviors that you do not desire for your own kids to have.

Ultimately it’s up to each of us to decide what is best for our children, what will and won’t be a good influence on them. But it sure is easier to ask other people to be understanding of our unwanted behaviors than it is for us to be understanding of theirs.

Be careful what you wish for

It’s funny, those of us who have children that don’t speak for a long time… we wish and wish and wish for them to find their voice. Then they do. Then a few years later we’re telling them to stop talking all the way through a movie, or to stop talking and eat or… just to stop for a minute!

Being social is the same, in a way. Autism is classified in the way it makes being social so difficult.. and so we wish and wish and wish that our children can be more social and go to play dates and birthday parties… and then when it happens, we fear the influence!

How can we wish for something so bad… and then not want it again so quickly? Is that what we wished for? Were we unaware of the issues that would come with our wish or were we more than willing to accept those issues if only our wishes could be answered?

Because it seems to me that it’s easy to forget about not caring about the issues when the issues would be a welcome problem to have… that doesn’t diminish the problem though.

We still want our kids to stop talking all the way through dinner or the movie we’re watching. And we still want our children to be around positive influences more than negative ones.

But at the same time, we can’t forget the alternative… we can’t forget all of those out there who still haven’t gotten their wish.

So many people would love to have their children ruin their movie by talking through it… because it would mean that they’re talking. So many people would love to have to worry about what bad behaviors they might pick up from other kids at a birthday party…  because it would mean they’d be at a birthday party!

When something seems like a problem… don’t think “be careful what you wish for” and don’t think “monkey see, monkey do”….  instead, think of another old cliche….  take nothing for granted.

So I think, and this is just my opinion, that sometimes a problem is a good problem to have. Because not having that problem can be so much worse. So keep the big picture in mind when you make these decisions… as I said, it doesn’t diminish the issue but perhaps it will give you a new perspective.

Besides, despite this whole article… not all influences are bad influences. There could be some good things picked up along the way!

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A bit of fatherly advice

By on March 20, 2012 in Parenting

father-childEvery parent’s wish is for their children to have a better life than they did… whether rich, poor, big family or small… we only want our children to get the most out of life, and to do so better than we did before them.

Not everyone has the same advice on how to do that and sometimes we down right disagree with others, that’s fine.

So today, I am writing this for my two boys, Cameron and Tyler:

1. Risks

Through out my life, I’ve had a lot of my ideas pushed aside by family and friends that told me that they’d be too risky to try. Take the safe job, make the safe choice, don’t speak up for yourself or you might lose something…  avoid risk!!

If I could go back, I’d tell myself not to listen to any of them.

Sure, some of those ideas were really bad ideas. Maybe some would have failed. Maybe even all of them.

Maybe some would have succeeded too though.

Either way, it doesn’t matter… because right now, I wouldn’t be regretting having not tried. To at least try means that today, right now, I’d have gained the experience that comes with trying. I’d be one step closer to knowing what things didn’t work which would mean that I’d be one step closer to knowing what will work.

Maybe I’d have really really liked one of those things. Sometimes you never know you love something until you try it. Perhaps I’d have loved one of those things so much that the risk would have been worth doing it… and worth doing it again and again.

2. See things through

For all the things I didn’t try, there were still things that I did try… things that required less risk, or no risk at all. The problem with those things was that I’d never see them through.

I’d start something and lose interest, get distracted by life or simply be unable to finish due to my own short comings. What does that mean? It means I didn’t push myself hard enough to know how or to be able to finish what I started.

It is far worse to never finish than it is to fail and end with valuable experience.

3. Embrace the critics, ignore the haters

There is a very big difference between a critic and a hater.

Haters will do their best to tempt you into an argument or to spark your anger. Their jabs have no substance except to incite emotion.

A critic, on the other hand, may be harsh at times, but will offer real observations and sometimes even advice for moving beyond what is revealed in those observations. A critic doesn’t care if you take their criticism or not; or if you get mad or not. They do not speak to anger. They speak to offer criticism. Listen to them. Learn from them.

Critics are the voice of your failures and failures are the experience you take with you when you do something better next time.

4. No one was ever able to stand out by blending in

If there is one thing that school pounds into you, it’s to blend in. Do what everyone else is doing and they might accept you, be different and they will likely laugh or even bully you.

I’m going to tell you a secret that you might not believe until later… school doesn’t matter. The kids at school don’t matter. What you learn at school doesn’t matter. Trying to fit in with all of that will only result in one thing… you won’t matter either.

Be different. Be proud. Stand up and stand out and do it so well that people take notice.

When you think about all of the greatest people in the world, think about what they do to be the greatest. Do they try to do what everyone else is doing or do they try to be different?

Don’t worry about better or worse. Because you will be worse. But you will also be better. That isn’t what it’s important. It’s not always the best that stand out. It’s not always the best that are remembered.

Just be who you are and don’t ever let anyone tell you that you need to blend in. You do not need to blend in. Not in school. Not ever.

5. Don’t let fear stop you

Dads aren’t supposed to be afraid of anything, but we are. We’re afraid of a lot of things. Sometimes the same things that you’re afraid of. The only difference is that it doesn’t let it stop us, or at least, it shouldn’t. But even dads are human.

I’ve let my fear stop me a lot of times. Remember #1? Risks? That’s what I’m talking about. When a risk seems too big, like I might lose a lot… I let my fear get the better of me and I didn’t even try.

There’s nothing wrong with being afraid of the risk. There’s nothing wrong in being afraid of anything. But don’t ever let that fear be what stops you.

Let me put it another way, maybe you’re thinking of doing something really big but the risk in doing it isn’t worth the reward. That’s fine. Don’t do it. You’re smart. That’s entirely different than not doing something because you’re afraid.

There were some things that I was smart to walk away from. Then there were also things I walked away from simply because I was afraid… that’s not smart.

6. Go for what you want

Figure out what you want. Figure out how to get it. And do it. No matter who says not to. No matter what the risks are. No matter how afraid you are. No matter who might be looking and thinking you’re strange for wanting it.

Do it. Do it for me. Do it for yourself.

You’re already a better person than I am. You have a much better life waiting for you than what I had. You just have to step up and do it.

From Dad

I am writing this for both of my sons, Cameron and Tyler.  It doesn’t matter that one has autism and one does not. This advice applies equally.

No two lives are the same, no two journeys are the same. That’s how it is supposed to be, with or without autism.

Do these things that I could not and you will be happy, I will be happy too.

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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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Some Autism resolutions for New Years

By on December 31, 2011 in Autism, Autism Holidays

I’m not really a big resolutions person. I believe that people should try to improve on themselves all year round, not just because they bought a new calendar.

Still though, it is a tradition and in that sense, I thought I’d offer up some thoughts on things that we all (or at least, most of us) could resolve to do a little more, less or better in the new year.

Some suggestions

2012 new year wishes on sea1. Stop using the word “retard” or “retarded” to describe things, situations or people that you do not understand or that makes no sense to you. In fact, stop using the word entirely.

2. Stop assuming you know a person’s life story by a brief moment in time. The lady at the store with the screaming child? You don’t know her. You don’t know her child. The homeless guy that only wants to share a smile with you? You don’t know how he got to be homeless. It could have been no fault of his own. The girl that gave up her baby to adoption, you don’t know her reasons or how it could have been if she didn’t. You do not know people based on 1 short experience.

3. Finish a debate or argument without using a single derogatory comment, name calling or reference to their own history/personality. Pick a disagreement, or try to do it with all disagreements, and make every effort to disagree based on facts, not emotions or personal opinions.

4. Stop making it your life mission to correct people on every little thing. The autistic person that calls themself autistic? Maybe you shouldn’t tell them to use “people first” language. The person who’s tried the gluten free diet but found no benefits, maybe they don’t need to hear why you think they are wrong. Inform folks, don’t feel you need to correct them all the time.

5. Stop reading into everything until you find the negative. Take a compliment, a kind thought or a good intention as it is intended and stop trying to find a way for it to be a bad thing. Ulterior motives, unintended meanings, alternate ways of interpreting… just stop. You know what they meant.

6. Slap yourself (metaphorically) the next time you tell yourself that you can’t do something or that you’re not good enough. Whether you have Autism or not. The next time your inner voice tries to stop you from doing something you really want to do… remind yourself that you promised to not listen one time… and do it.

7. Take something you feel negatively about and write out a list of 10 positives about it. If it’s Autism, write out 10 positives about Autism. If it’s city traffic, write out 10 positives about city traffic. It doesn’t matter what it is… just something that you really do not like. The goal is not to change your perspective such that you will now like it, but to realize that, if you give it some effort, you can find something good in the most unlikely of places… if you just stop the negativity for a moment and try.

8. Place a value on your time. Make “free time” a thing of the past and figure out how much your time is worth. Don’t joke about it, figure it out, even if it’s too low or too high. Now, the next time you find that you’re bored, being lazy AND… the next time that others ask you do things for them, keep that value in mind and ask yourself if it’s really worth your time… or if there is something better you could be doing. If your time is valuable (and it is), use it… do something with it. Get creative.

9. Donate or volunteer for something. If you did #8, you know that you are worth quite a bit. So put that value to good use and give some money or time to those that are in need of both. It doesn’t have to be a lot. But if you’re like me, it’s one of those things you have every intention of doing but just don’t.. or don’t do as much as you’d like. Make it happen.

10. Look in the mirror and tell yourself “I’m proud of me”. Do this once a day if possible but even to do it just once in the new year, do it. In the mirror, looking yourself in the face. You’ll know if you’re being sincere or not… and do it until you are.

If you have Autism, be proud of who you are and in your strengths. You do have them. Be proud that you are you, no matter how much others may try or wish to change you. Be proud. You are not the exception… you are exceptional.

If you have a child with Autism, be proud that you’ve handled the looks, handled the added stresses, over come the struggles, that you’ve done more than you thought you were capable of for your child. Be proud that you’ve surpassed those “you’ll see” comments from family and friends when you first had a baby… those people, who thought you were in for a shock.. had no idea what it could really be like. You do, you did it.

Even if you have no disorder, no struggling loved ones… even if you look in the mirror and think “I have none of those reasons, why does my life seem so hard?”… stop thinking that and tell yourself “I’m proud of me.” Life is hard… for everyone! Don’t beat yourself because you have it worse and certainly don’t beat yourself up because you don’t. Be proud of who you are… it’s not a competition to see who has the most scars. Life dishes them out no matter who you are and it’s up to you to face those scars in the mirror and be proud of yourself.

Happy New Year

Stop making resolutions to lose weight, stop smoking or other “typical” ideals that you think that society would want you to make and start thinking about ways to just be happy with who you are.

Put aside any negativity that you can, incorporate any positivity that you can and just give it a try when you normally wouldn’t have.

Autism is a struggle, whether you have it or devote your life to a loved one that has it… it can be hard. Life itself, even if all goes well, can be hard.

Don’t let negativity in your own mind make it harder… and certainly don’t use that negativity to make someone else’s life harder.

Smile when you don’t feel like smiling. Find a positive where you see only negative. Tell yourself your proud of who you are even when all you can see is regret.

Be a little more understanding of others, accept them for who they are. Be a little more proud of who you are and what you’ve accomplished. You’re a valuable person, even in your free time!

Have a very happy new year… you deserve it.

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42 days ago

By on October 6, 2011 in General

I’ve been wrestling with myself about whether or not I’d write something about Steve Jobs… everyone else is doing it, people must be getting tired of it by now… but I really, really…. really wanted to say this.

I am not a “fanboi”, as they’re called… meaning I’ve never stood in line to buy an Apple product, I have only ever had a couple of Apple products in my life. But that doesn’t mean that I can’t see the impact that Apple, and of course, Steve Jobs, has had on just about every aspect of our current lives.

Especially being in the Autism community where the Apple ipad inadvertently opened up the world of Autism to a whole new way of thinking.

But this is not a post about Steve Jobs or his products.

The answer to life, the universe and everything

If you’ve never read the Hitchhiker’s Guide to the Galaxy, I have to explain this to you because it’s a bit of a very interesting coincidence.

In the book, some super beings ask a supercomputer for “Ultimate Answer to the Ultimate Question of Life, The Universe, and Everything“, it calculates for 7.5 million years before reaching the final answer…. 42.

Why is this a coincidence?

The number of days between Steve Jobs retiring as Apple’s CEO and his death? 42

Working Living until the very end

steve jobs

by Lea Suzuki of the San Francisco Chronicle

The reason that his death came as such a shock to people is that, just a month ago, he was still at Apple, steering the ship.

That just doesn’t happen. You see, people tend to leave work once they get sick. They find out that they have months or even years left, they’re weak… so they step away and make the most of the life they have left.

Not Steve Jobs.

When I first thought about it, I admired how he worked right up until the very end.. or at least, a whole lot closer to the very end than most others would ever do.

I quickly corrected myself though, because the very fact that he was there until the very end was indication enough that to Steve, it wasn’t work. We already knew that though, in that he always professed to love what he did and told others to do what they love. And he proved it all the time.

Some would say that he was a natural at giving his presentations and a marketing genius… I think he just genuinely loved his work. He was proud. That sort of enthusiasm and excitement can’t be faked.

If all of that isn’t proof enough that he loved what he did… 42 will forever be proof enough for me.

He was there because he really was making the most of the life that he had left.

Do not do, be

In the short time since his death (less than 18 hours ago now from the time of my writing this), there has been a constant stream across all social networks of inspiring thoughts, phrases, paragraphs and even entire speeches of his and it’s truly great to see.

But all of these great things he said, he didn’t just say them, he didn’t just do some of the things he said… as many of us will try to do, he was those things. He lived it.

“Stay hungry, stay foolish” is how he finished his speech at Stanford in 2005. Inspiring words, great thought… but how many of us will live that way from here on out?

He did.

There are a LOT of very wise and inspiring quotes of his that I could list out here, the fact is… none of them will do you any good unless you live them. Don’t just agree with him, don’t just believe the words he says… live them.

Here is the video of that speech, please watch:

Here’s to the crazy ones

This commercial from 1997 was never aired. It was narrated by Steve Jobs and has the tagline “Think Different”. If this doesn’t give you a sense of how Steve Jobs’ mind worked… nothing will:

Why did Steve Jobs identify with the people in that commercial so well? Why did he deserve to be included with that list of people?

Because he lived it. He didn’t just say the words. He didn’t just believe it. He lived it.

Impacted our lives

I see a lot of people writing about how his products have impacted our lives, how his thinking has impacted our lives… what I truly love reading are the posts from Silicon Valley from people who became great people in their own right, because of how Steve Jobs impacted their lives far more than a new iPhone ever could.

I don’t need his products to feel his impact. And that’s the beauty of what he was able to accomplish and the true testament to who he was.

I want to live my life as he lived his… doing what I love. I want to do what I enjoy doing until my 42 comes.

More so than that, I want the same for my children. You see, Autism or not, I want my children to find what makes them happy and then to do it. But as a parent of a child with Autism, it’s even more paramount as one of the defining characteristics of Autism is that autistics can excel quite profoundly so long as they’re able to do what it is that they love.

Trying to force someone to conform, in other words, to put a square peg into a round hole, simply does not work. Not with Autism, not without Autism.

“Your time is limited, so don’t waste it living someone else’s life.” ~ Steve Jobs

His products changed the world.
His innovations improved our lives.
His lessons inspire us to carry that forward.

The man did not die.. he became legend.

42

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