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If you can’t say something nice…

By on October 13, 2011 in Autism

I know, my mom was the only mom to ever use that expression, right?  No?

I think it’s one of, if not the, first lesson most of us can remember having learned… because right around the time we start retaining memories for later is about the same time that we learn to just say what ever is on our mind.

Before kids learn to lie, they learn to be honest… brutally honest. If your ass looks fat in those jeans, your little one will tell you about it.

I bet my mom never imagined it would be like this

So now I’m a grown up, I have children of my own and I get to sling the old cliché’d lessons around too… but it’s not the same for me. As the parent of an autistic child, I have a better chance of teaching this lesson to my 3 year old than I do my 6 year old son with Autism.

Autism is classified as a social impairment and a lack of fundamental understandings in communication… more to the point, autistics have a hard time maintaining friendships, relationships and even simple conversations.

One of the reasons for this is that people in society aren’t very good at accepting brutal honesty. To most people, an insult is an insult… whether it’s true or not. If you call an ugly person ugly… you’re insulting them.

Why? Because of generations and generations of people saying “If you can’t say something nice, don’t say anything at all.” Would we still take offense to brutal honesty if people didn’t say that? Probably. Still though, when you think about it… it’s actually rather silly.

Essentially people have become so insecure that hearing a negative, even when true, is an insult. And so we teach people not to say anything unless they have something nice to say.

Autism – “don’t say anything at all”

Now I’m presented with two problems that my own mother never had to deal with…

  1. People, especially children, with Autism are already less likely to say anything at all. Either from being non-verbal to begin with or being socially unable, either via anxiety or fear or what have you. So telling an autistic child not to say anything at all becomes very counter productive.
  2. People, again, especially children, with Autism are very much inclined to say what they believe to be true, whether nice or not. Lacking social aptitude as well as having a lack of understanding how and what other people think, they don’t tend to take into consideration how what they say will affect others.

So not only does this expression discourage my son from speaking but it also puts a very heavy weight on him as he will either never know, or never know with any certainty, if what he is about to say is something nice or not.

First, I encourage him to tell the truth and not lie… then I have to tell him not to tell the truth when it’s not nice. This is a lot for any child to deal with, so how well is it going to be taken by a child that is unable to comprehend what others may or may not be thinking.

What to do?

if you dont have anything nice to sayWell, I can’t really go around society convincing people to just be more secure with themselves and accept a little honest criticism sometimes… I’m pretty sure even I can’t live up to that expectation all the time…. although it is a nice thought.

Do I tell my son the same old cliché in hopes that he can figure it out and make the most of it? Do I hope that it doesn’t only complicate matters for him?

Ultimately, this comes down to the age old debate that sometimes still causes arguments among parents of autistic children… do I help my child to conform and be a part of society or do I allow him to be his own person, which in all likelihood will make him a better person but also cause a lot of problems for him down the road?

The problem is, there is no one right or wrong answer and certainly not an easy one.

The best that I can do, for me, I think, is to convey the message but abandon the cliché. It’s true, I need for him to understand when to speak up and when not to, to consider the thoughts and feelings of others but it’s also true that I can’t put the same kinds of expectations on him that my mother put on me.

In other words, I can’t just cliché him to death and expect him to get it.

In the television show Parenthood, Max (child with Autism) tells a former alcoholic that he shouldn’t go to a party because he’s an alcoholic… Max’s sister is quick to respond, as though Max shouldn’t be rude, but the former alcoholic says “it’s ok, he’s just looking out for me. I should be as honest with myself as he is.” and realizes that Max is right.

A part of me never wants to squash that in my son. There’s something there to be admired.

It’s a delicate balance I think… not an all or nothing system. Which just makes it all that much more difficult. I don’t want my son to never speak up for fear of not being nice but I also don’t want him unintentionally offending everyone he meets.

Unfortunately, you won’t get any solid answers from me on this one… this is a life long lesson that even the best of us sometimes still wrong.

Like many things, this is going to be a process… one that will hopefully help him to understand society and his place in it as well as to help me learn some new things along the way as well.

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Balancing the attention between one child with Autism and another child without Autism

By on October 5, 2011 in Autism

One of the most powerful scenes in the NBC hit tv show Parenthood, for me, was when the father sat down to talk to his daughter about how he missed her soccer game due to her younger brother’s Aspergers diagnosis. He needed to be somewhere with his son and couldn’t make it to her big soccer match.

He apologized for how disruptive it had all been for her the last couple of weeks, at which point she says “Weeks? Dad… try years.”

It came as quite a shock to him as she sat there and listed off a bunch of events in their life that was affected by Max (her younger brother with Aspergers)… “ever since I can remember, it’s been all about Max.”

It’s at this point, I wished television had a “look inside his head and see what he is thinking” component but it doesn’t.. in a way, it’s a good thing because that leaves you and I to really take it in with him and realize…. wow.

Advice on how to maintain balance

Cameron and Tyler

Brothers

I’ve had a lot of people ask me lately how I maintain balance between my two boys, Cameron (6yrs old with Autism) and Tyler (3yrs old without Autism)… the truth is, I just keep them both and the need to keep them balanced in my mind.

That may be hugely over simplifying it but at the core, that’s it. I am just always conscious of it and even concerned about it. I don’t want either of them to ever feel left out. So every time I’m with one of them, I wonder what the other is doing or thinking.

Cameron is in a special class, it’s a very very different class from Tyler’s class. He gets better technology to use, there’s less children, more adults and even though the routines are more strict, the structure is less so. Being a class of autistic children, there’s no real curriculum, not in the sense that some other classes have anyway.

We’ve missed out on carnivals and amusement parks because the noise and crowds would simply be too much for Cameron. That means that Tyler has missed out as well. We have avoided some restaurants because Cameron might be overwhelmed at them… that means that Tyler has missed out as well.

Right now, Tyler is 3 and so, that old cliche about not missing what you don’t know about applies. But soon he will…. and he may resent having missed out on some things in his life due to his older brother.

So, every time we don’t do something or change something to accommodate Cameron, we have to keep Tyler in mind… going to a different restaurant, or someplace else that is fun.

It likely never really balances exactly but it’s something. So long as you’re conscious of it, it’s something. An effort will be made.

It goes both ways

When Cameron was little, like, really little, he needed some snuggle time with me every single morning when he first woke up. As he got a little older, he rejected that idea. He not only didn’t need it but didn’t want it. Now he enjoys a hug from time to time, we have our routine hugs and kisses before bed but any semblance of affection in the traditional sense beyond that is nowhere to be seen. Which is ok by me. I know he loves me with or without it.

Tyler on the other hand loves to snuggle while he watches tv, gives me hugs quite often and is not shy about showing his affection at all.

Sometimes this has me wondering though, as I sit with Tyler on my lap watching tv while Cameron is in a chair across the room… does Cameron feel left out?

I have asked him multiple times and will continue to do so from time to time, if he’d like to sit on the couch with me, he always says no… and I respect that. Still though, a part of me wonders if there’s a small part of him that actually would like to but prevents him from doing so. I’m not sure I could describe it adequately enough but you get the idea… a part of him longs for that show of affection but a bigger part of him prevents him going through with it.

It’s also entirely possible that he doesn’t feel left out at all and really couldn’t care less that I snuggle with Tyler and not with him. Unfortunately, there’s a good chance that I’ll never really know for sure… or if I do, it’ll be later in life… when it’s too late.

The future

The problem with all of this is the resentment… what we all fear of our children, regardless of special needs. The last thing we want is for our children to resent each other for something that was our, the parent’s, fault. Something that we could have done better, avoided, recognized… done something about.

Hindsight… it hurts because by the time you get it, it’s too late.

Unfortunately, I don’t know your family dynamic, I don’t know you and I don’t know you’re children… so I won’t be writing any blog posts on tactics to use or methods to apply to your daily life. The only thing I have to offer is…. keep it in mind.

So long as you keep yourself aware of it, you’ll do something about it. Your mind kind of makes you do it.

There are quite a few articles out there, by doctors, with good suggestions… like having nights dedicated to each child, having “desires” lists for each child where they each get to have their desires fulfilled… putting them on equal footing…  some of those articles will have some insights that may help you.

But ultimately, only you can know what will and won’t keep things fair and balanced. In fact, chances are you won’t know, not at first. But you’ll figure it out… so long as you always keep it in mind.

Me?

I give Cameron an extra “I love you” from across the room while I have Tyler sitting on me. I just like for Cameron to know that Tyler may be on my lap, but I’m thinking about him too.

See? It’s not complicated. It’s not worth putting into a “how to” article to share with the world. It’s something I do… you’ll find something you can do.

Just remember, it’s not just the negatives (missing out on things, avoiding fun stuff, etc) that cause resentment… it’s the good things too (showing affection, spending more time with, etc).

Keep each child in your mind equally because they are equals. They deserve to be treated that way.

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The complexities of a hug

By on October 1, 2011 in Autism

My son used to need snuggle time with me every morning when he first woke up. For the first little while, it was a bit of an annoyance (I sometimes had other things I needed to do) but a very pleasant and welcomed one. I cherished that time we had each morning and even though he refuses to do that with me anymore, I still remember it fondly.

While he never was a hugger or anything, that snuggle time was pretty awesome… but, once he no longer desired that, it all came to a stop. He still loved me but there were no more “signs” of love, in the traditional sense.

Then, a few years later, he become more and more willing to give and receive hugs… until eventually he became to depend on them. Every single night, before bed, we do hugs and even kisses… as regularly and routinely as we had done when we had our morning snuggles.

This too will stop one day, as he gets older, but that’s ok. I love it for right now and knowing what I know about Autism, it’s not something that I would ever take for granted.

How does a hug work?

hugsNo one ever thinks to ask what it is about a hug that makes it so comforting… how does it work, what the rules when hugging? That’s because it pretty much comes naturally. Someone hugs you, you hug back and all is good with the world.

It just isn’t that simple for my son. I mean, for the most part, he gets it… he loves to hug me before bed and there is no way he could get that wrong.

Have you ever hugged someone because they got hurt or felt sad? Cameron does that too… all on his own. No one taught him that. However, this is where the complication comes in.

Egg timer?

Believe it or not, at this point, we have to start timing his hugs… so that he knows when to let go. That may sound a little odd but basically, it’s become necessary.

When his little brother is hurt, Cameron will grab him, and hug him with every fiber of his being… and not let go. To Cameron, that’s what you’re supposed to do.

And I love that about him… I truly do. He really truly cares, he really truly is trying to make it all better for his little brother.

But if you’ve ever grabbed onto an upset 3 year old and tried to hold him there, you know that it doesn’t work very well. After a few seconds, the little guy goes completely nuts and matters only escalate from there.

This makes Cameron want to hold on tighter.

When his little brother gets more upset, Cameron holds on more, thinking that it will help. He’s truly a wonderful big brother, I love that about him. However, he’s going to need a little guidance on this one.

Hug Instructions

As a parent of a child with Autism, I’m sure you can relate with this but…. there are just some things in life that you never imagined you’d have to give instructions on. Like giving a hug for example.

But that’s what it boils down to. Hug instructions.

The trick is to make Cameron understand that he’s not doing anything wrong. That we are so very happy that he loves his little brother and that he wants so bad to make everything all better.

While reassuring him of that, we simply need guide him in how to do it in a more appropriate fashion… for example, counting to 5 and then letting go. Recognizing when his little brother gets MORE upset and then letting go. Things like that.

And they’ll take time and take work, but it’s so worth it because I’d hate for Cameron to feel bad about what he’s doing and shut it out of his life forever.

I lost those morning snuggles and while I understood why and I didn’t really mind, I realized never to take such a wonderful thing for granted. And it’s entirely selfish of me, in a way, but I don’t want to lose Cameron’s desire to hug us.

And as much as his little brother gets upset when Cameron holds on too long… I’m fairly sure that he wouldn’t want his big brother to stop either.

Who knew that hugging could be so complicated?

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Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

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When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

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