Autism – The (not so) Invisible Disability

By on July 4, 2012 in Autism

Autism is sometimes referred to as “The Invisible Disability” because it can be difficult to spot, especially if you are unaware of the characteristics that define autism.

If you saw a group of kids standing in a group, could you pick the one that is autistic? What about if they were walking around the halls at school? How about if they were running and playing a game or a sport?

Chances are, if you know autism well, you know that it’s usually far easier to spot an autistic when they are exerting themselves physically, like running and playing.

I can’t help but feel so very bad for Cameron when I see him run, his arms flailing about, his tongue sticking out, his legs all wobbly… he really has very little control over his own body. He sure does try hard though! I think that’s why he’s that much more disappointed when others are faster than him.

Today, while out for a walk in the woods, we put our two boys off on a race. Tyler, who is 4.5 years old and Cameron, who is just about to turn 7.

Normally, you’d expect a 7 year old to beat a 4 year old in a foot race but in this case, neither my wife nor myself were surprised when Tyler was able to get to the finish line first.

And it’s not that we’re disappointed. We’re not. All we ask is that they try. If they give it their best, we’re happy. But Cameron doesn’t see it that way.

To him, he doesn’t understand why he’s not as fast. He doesn’t understand what it is that’s making him slower. He just thinks he’s stupid. He just thinks he’s “the worst kid ever.”

It really hurts because I don’t know how to help with that. I mean, yes, you tell him to keep trying and that practice will help him to get better and faster.

But what kid believes that when they feel completely defeated?

Perhaps it’s best if I just show you. This is the video of my boys having a race from their mother, to me and back again.

I do believe though, that this is not a life sentence. Autism itself is but like all other characteristics, like all strengths and weaknesses, this can be worked on, improved and even perfected.

Given time, dedication and persistence, Cameron can become a great runner. He can even become the fastest, if he worked hard enough at it.

But as I said before, all I would ever ask of him is that he try. And that is what I want most for him. For both of my boys.

To try.

So no, it’s not an invisible disability. At least, not for every person that has autism. Sometimes it is very much visible and makes for a very large hurdle.

My boy gets down on himself because of this. He doesn’t understand. But I do. It’s not invisible to me.

Comments { 1 }

How to Maximize Learning in Autistic Children?

By on July 3, 2012 in Autism

Children with autism usually have difficulties in learning because of the impairment in their social communication and interaction with others. Moreover, the repetitive tasks and restrictive behaviors and interests also prevent them to integrate to the learning process. Children with autism are best described as children having their own world” so allowing them to learn in a conventional way will not be effective.

learning in autistic children

Parents of autistic children will do the best way they can and try all possible things just to help their children learn. Parents would usually seek help from experts on autism regarding the treatment of their child. If your one of those who has an autistic children or just a concerned individual wanting to help children with autism, here are the following tips to maximize learning in autism:

Seek early intervention

The first thing that autistic children need is early intervention. Autism usually can be observed even during infancy. Parents need to monitor the growth and development of their child to identify possible delays in the language and social development of the child. The earlier the diagnosis will be, the earlier the interventions are, which significantly dictates the outcome of the treatments. Before the age of 3, children with autism require one-on-one therapy in order to improve behavior, language, self-help and social skills of children.

Expose the child to different social settings

An autistic child should never be confined at home because this will just limit their worlds to the home. Children with autism need exposure to the community, school and other social settings to maximize environmental effects to learning. Through social exposures, autistic children will be able to adapt in some way with the presence of other people.

Seek speech therapy

Autistic children will eventually develop language difficulties, which prevent them in dealing with other people. In this line, speech therapy will help children adapt to social interactions although they really do not develop the learning and language abilities of average children.

Undertake auditory integration therapy

Auditory integration therapy is a means by which autistic children are exposed to sounds in order to reduce sensitivity to sound frequencies. Autistic children are usually sensitive to various sounds, which prevents them from their learning. Auditory integration therapy also involves music therapy to enhance and stimulate communication abilities. Parents can employ music therapy even at home such as playing neutral and soft melodies to help children to be calmer.

Special Education

Autistic children also require special education rather than having them in regular schools. Special education caters to the specific needs of autistic children and also improves the mechanism by which children adapt to learning. Special education does not focus on teaching children the basic reading, writing and arithmetic skills, but focuses on improving the social interaction, language development and behavioral modifications. In order to maximize learning in school, parents should choose carefully the school that will provide the best education to their autistic children. For maximizing learning, the author recommends ABC mouse which features books, songs, games, puzzles, art activities and even printables. Read ABCmouse Review to more about it.

Life skills education

Eventually, autistic children will be left on their own especially when their parents will eventually age. In this line, life skills education is also essential to help children go about with the everyday tasks such as self-care and feeding.

Aside from these learning techniques for autistic children, they need unending love and guidance more than anything else. Autistic children who are loved and guided appropriately by their caregivers are able to adapt more and learn more. Those who seek love and attention most often experience deterioration in their cognitive functioning that will eventually make learning more difficult.

Guest Author Bio

Dr. Amarendra, the author writes for www.ordersciencebooks.com which contains Naturepedic Promo codes. Naturepedic provide natural, non-toxic, waterproof, and organic crib mattress and bedding products that are safer and healthier sleeping materials for infants and children.

Comments { 4 }

The life I once had

By on June 26, 2012 in Autism

It’s not something I talk about very much. It’s really quite boring. But even more than that, it’s really quite depressing. It’s negative. It’s not the me that most of you have come to know now, that is if you have been reading the things I write before this one. If this is the first of mine that you read, I am sorry. But please do stick it out because there is a point to my telling you this.

loneliness10 years ago

When I was 26, I lived in one of, if not the, most beautiful city on Earth, Vancouver BC. I really loved it there. I had an apartment on Beach Ave, over looking the ocean. My living room wall was glass from top to ceiling. Just me, my computer and the most beautiful sight you’ve ever seen.

And I was miserable.

I didn’t know it back then but I have Asperger’s. Back then, I was just… me. Miserable, depressed and lonely. Which is funny to think about because I did have friends and family that lived close by. But I was so very lonely. I would work at my computer, making websites for people. I made my own hours, I made my own money. I had no boss. I had no place to be.

My schedule would shift because every single day I’d go to bed one or two hours later than I had the day before. I say day, not night, because when you continue this process for several years, you go from staying up all day to staying up all night and back again.

I had accomplished my goals. I worked for myself. I could afford a great apartment. I did as I pleased.

I wanted to kill myself.

My darkest day

It never really occurred to me just what it was I was telling her or how much it must have been hurting her or just how stupid it was of me to be saying it but, without a doubt, the worst it had ever gotten was when I told my mother, while bawling my eyes out, that I was so very sorry because she would never get to be a grandmother.

Me, being her only child, feeling completely defeated and worthless in life, had fully accepted that no one would ever love me and that I most certainly would never get to a point in life where I would ever have a family.

I couldn’t be the person that people wanted me to be. I felt a total fraud every time I walked out the door. I told witty stories, quick one liners and would often be the “life of the party” with those that knew me but it was never right. It was never me.

I loved who I was and what I had accomplished but hated myself all the same.

I even sought out help in the form of a psychiatrist but it proved to be pointless. I don’t know if it’s because of my Asperger’s or just watching far too many drama movies and television shows but it was as if I could see each line he said before he said it. I knew the points he would be trying to make, I knew the directions he would try to take. And each and every time I would dismiss and ignore. It never pertained to me. It never pertained to my problem. It was always stuff that made sense for other people but not for me.

And so I resigned myself to a life of solitude. I told my mother that our family line would end with me. Her disappointment.

What a thing to tell a mother.

10 years later

So here I am now, 36 years old and feeling like my past was only a moment ago and a whole other life time ago at the same time.

Today I have a wife, two little boys, a dog and a cat. I have no money, no free time and a very strict schedule. I live in a crappy apartment with no view to anything in a town that I don’t want to be in.

I’m the happiest I’ve ever been.

So what happened? Well, to be honest, it’s not really the details that matter. What matters is that I was there for them to happen.

My wife, as it turned out, was one of my oldest friends. I had known her for a very long time. One day, at the right moment, in the right place, something happened. And here we are.

Thing is, if I had had my way, at that time, I’d have still been at my computer, in my Beach Ave apartment, being miserable. That moment would have never happened.

A moment in time was all it took. I didn’t know when or where, I was most certainly convinced it would never exist, but it did. And now my life is not just different from what it was, it’s nearly the opposite.

I have no friends now and my family is hundreds of miles away but I never feel lonely. My wife and kids, they were what I was missing. They have filled that hole in my heart.

I have no money or time anymore but at the same time, my kids always have food, the latest games and toys, clothing on their backs. You can have all the time and money in the world but they have no value at all unless you have a purpose for them.

Your future you is waiting for you

It sounds corny and I’m not making you a guarantee but if you believe it and if you work for it and you make the effort to simply be there, that moment can happen to anyone.

Many autistics fear their own future. Will it be more of the same? Bullying in school? Bouncing around jobs if there are any jobs? Feelings of anxiety and loneliness?

Parents also have these fears for their children. Especially if their children are non-verbal or particularly challenged, such as having other associated conditions like blindness or epilepsy.

I am not trying to throw positivity down your throat. I’m not Anthony Robbins. But I can tell you how I see things based on my own experiences.

If I had stayed at home, if I had moped for one more minute, if I had simply believed myself worthless at that one key moment instead of… what ever it is that I felt… I would probably still be on my own. If was I still alive at all by now.

I didn’t know it then but autism was confining me to that computer chair. It was making each outing a torturous affair. It made me disregard or even dislike the friendships I had even though I loved my friends. It made me hate myself.

At the time, I thought I was just a loser. Just the oddball out that was meant to be alone. A person that was meant to be miserable.

But I did go out. I did keep that friendship going after so many years, even though that was largely due to her, insisting on keeping in contact even when I would “forget” to reach out.

I look back now wishing I could travel in time so that I could tell myself just one thing; “Endure this. It’s going to really suck and you’re going to really hate it but endure it. Because no matter how impossible it seems, like it could never happen to you… it can. I am your future and your future is waiting for you.”

To be honest, I probably wouldn’t have listened, not even to myself. That’s how miserable I was. But that kind of hope can make all the difference.

That kind of hope is what is missing for a lot of young people today. Especially those with autism who feel like there is just no place for them in this world.

To those waiting for their moment

My son has two advantages, the way I see it. One is that he knows he has autism so he’ll know the reason for feeling how he feels. Perhaps he’ll even know the coping mechanisms to not let it get in his way. It won’t just be a random feeling of despair and loneliness. Second, he has me. And I’ll always be there to tell him that his future self is waiting for him. That he can and will be happy if he endures long enough.

But I’m not a time traveler nor am I a fortune teller. So I can’t make any promises on what the future will hold. I can only tell you what I have experienced and what I believe.

What I believe is that there is nothing that can ruin your life unless you let it. Not autism nor anything else. Granted, it can make it one hell of a whopping huge challenge but nothing can stop you from loving life and being happy.

You could argue that I was lucky, to have had that one moment that turned things around for me but that’s kind of the point I’m trying to make.

I told you that I felt lonely even amongst my friends. I told you that each outing was torturous. But I still went out. I still had friends. I still left my little ocean side apartment because if I didn’t… there never would have been a moment. I would not be here, right now, believing what I believe and sharing it with you.

Even though it was that one moment that I can pin point, looking back, that changed everything… it wasn’t in that instant that I suddenly switched from miserable to happy.

It was that moment that things turned around but it took time. A lot of time.

My point is, it wasn’t just luck. I wasn’t lucky. I was anything but lucky at that point in my life. But I was there.

You need to be there too. When every part of you tells you not to be, when every part of you tells you it won’t happen… be there anyway.

If you feel like an outsider, if you feel completely alone, if you have autism too… you know just how hard that really is.

But your future self is counting on you. Your future self is waiting for you.

Be there.

Comments { 12 }

So it’s Victim Mom vs Warrior Mom now? Here is some perspective

By on June 21, 2012 in Autism

 

Jenny Mccarthy Victim

Sending all the wrong messages

Jenny McCarthy, more famous in the autism community for her on again/off again autistic son and her war on vaccines than her actual acting career, has made some very bold statements during the latest Autism One conference where she likened some moms to choosing to be victims and enjoying the “oh woe is me” victim role.

For some light reading on the subject:

Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”
Words Matter
A letter to @JennyMcCarthy

There are a lot more posts and articles out there but I don’t want to list every single blog/article in the autism community because everyone has written about this.

I was going to let this go by as just something silly, nonsensical or, more or less, stupid.

But, upon thinking about it more today, I’ve come to the conclusion that I should say something. Something that I feel is imortant.

Perspective

To recount what it was that she said, I’m going to borrow from the Left Brain/Right Brain post (the first article I listed above):

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

Now, for the most part, the autism community got up in arms over this in one of two ways… either being offended as she had called them victims, or defending her as they felt that she was making a great point.

My stance is, it’s all a matter of perspective. Now, hear me out.

This is just an example, but where’s the dads? How come it’s only moms who get a label? If anyone should be offended, it’s us dads that work every bit as hard as the victims and warriors combined and we’re forgotten about completely.

See? Perspective.

Anyway, more to the point, I’d like to offer a few alternative perspectives.

The two groups

The two groups that she alludes to were contained within one larger group of moms discussing alternative treatments. I can only assume, and this is just me, that if not all, then most of those moms were in the anti-vaccine camp… believing that vaccines, or other toxins, had caused their child’s autism in the first place.

This already excludes a lot of moms in the autism community. The majority I’d say, since most autism moms do not believe the vaccine theory. This means that she’s casting a divide within an already divided group.

So to put it mathematically, in hypothesis only and my numbers will be way off, if the split is 75/25 for moms who don’t believe the vaccine theory and those who do… then she’s dividing up the 25 into two groups. If 50/50 then it would be 13/12 or something like that.

It’s still very wrong to label those moms and cast judgement, I’m just saying that maybe she’s not talking about the moms that you think she’s talking about. You know, the moms that have no qualms with the toxins of the world.

The Accepting Mom

The prevalent perspective is that Ms. McCarthy is talking about moms that have come to accept their child as they are.. with or without autism. That those moms do not seek out chelation or force feed their children bleach and therefore would rather just be the victim.

If this is the perspective of choice, then you must realize that it’s how she sees things. It’s her own perspective.

I realize that this won’t be popular among those who like Jenny McCarthy or feel how she feels but remember, this is only to illustrate a different perspective.

See, she may consider a mom that does not try things like giving their child a bleach enema as just playing the victim but I tend to think of that mom as simply having common sense enough to not try something obviously dangerous, and stupid.

She may consider a mom that accepts their child for who they are as enjoying the victim role so much that they give up rather than try tons of pointless and costly treatments but I tend to think that not seeing their children as damaged goods in the first place, and having unconditional love trumps all titles that one can fling at them.

She may consider a mom that talks about her struggles in raising a child with autism as a person that basks in the feeling of being the helpless victim but I tend to see that mom as someone that I can relate to, get advice from, share experiences with and understand.

She may see a “warrior mom” as a woman that battles “big pharma” and government agencies. That’s fine. To me, when I see a mom crying about how the evil empires broke their child, how much money they spend on treatments that put their children in danger because they are so desperate to cure them… that’s when I see a victim. In fact, I hear it in their chants: “big pharma is making money while making our children sick. We’re the victims!”

She may see a mother that never stops fighting for their child as a warrior mom but I tend to think that ALL MOTHERS NEVER STOP FIGHTING FOR THEIR CHILD. If they do… they’re not really their mother. Moms do not give up. Period.

She may see compassion, positivity, acceptance, understanding and love as being the victim. Then I say, please call me a victim too.

If seeing my child as perfect makes me a victim and seeing my child as broken, in need of being cured from the damage done by evil doctors makes me a warrior… I’ll take the victim title, thank you.

That’s just my perspective. And opinions are born out of perspectives. They do not make them fact.

Her opinions, based on her perspective, should remain her own.

She’s entitled to them.

As I am entitled to mine.

Signed,

Victim and proud.

Comments { 17 }

Chow Down

By on June 21, 2012 in Autism

 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

 

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to feel scary), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

 

“Alex, try these kale chips!”

 

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently my wife Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!

 

Alex (almost 14, PDD-NOS) used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

 

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable…”

 

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.

 

Comments { 1 }