You have to realize that this is a boy who really has no concept of the value of money except that we parents make it and use it to buy them stuff. He doesn’t really get that some things can cost more than others or that sometimes we just don’t have the money for what he wants.

Award winner for Ambition

So what did he say?

“Stuff that we need shouldn’t cost anything because we have to have it and that way, we’d have more money for the stuff we want.”

Simple right? Makes sense too. I mean, you start to think about all of the homeless people, the hungry people… the people who need basic necessities that simply can’t get it because they have no money. They should have these things because they need these things. We all should.

The things we want, now that’s what we need to work for. That’s what we need to earn.

The things we need, we deserve… simply by being human. The things we want, we have to work hard to deserve.

So it stands to reason that, if society could be revamped, from the ground up, the things we all need should be made available to everyone while the things we want would cost money.

The problem, as my wife and I saw it, is that most people don’t really know what they need. For example, most people think they need their cell phone. They don’t.

Many women think they need a good hair-do and make up while many men think they need access to sports or a fast car/big truck. They don’t.

It’s a bit of a warped mentality that we’ve all become accustomed to.

But I think that a system as my son envisions it, would really help to put things into perspective and firmly place that dividing line between needs and wants for us.

Another problem would be that those people that provide the shelter, food and other basic needs need to be compensated for their hard work…  but with enough thought, I’m sure that could be worked out.

Anyway, I’m not trying to work out the foundation for a new society, I’m just demonstrating how sometimes the most simple, yet profound, thoughts can really get you thinking.

And it came from, of all the unlikeliest of places, my 6 year old son who really has no grasp of needs vs wants nor that of money/value on things.

Or at least, I thought he didn’t.

Mike is 12 and is entering puberty, and he is noticing the changes in his body. We too have noticed how he is starting to sprout pubic hair and has begun to notice girls. My wife laughed hysterically when, upon discovering said pubic hair, he exclaimed, “I’m turning into a sasquatch!!” In the past six months we have noticed that he has asked more than one ‘girl’ to kiss him, including his married after-school teacher among them. So yes, we are kind of freaking out about puberty.

Perhaps we were unglued because his two older brothers were (comparatively) less demonstrative in noticing the fairer sex upon entering puberty. Or maybe because autism did not give Mike a ‘filter’ that neurotypical children have when expressing themselves; he just says what’s on his mind. As parents of an autistic child, any verbal expression (appropriate or not) is like gold; we just want to keep hearing it. So we have begun weaving social stories about girls and kissing and appropriate behavior. Personally, I hope this works for at least a little while; I don’t think I’m ready to give Mike ‘The Talk’.

Puberty, in and of itself, may have unintended effects on his developing brain and cognitive ability. Research has shown that there is an association between fetal testosterone and autistic traits. To many in the research community, it is not simply a coincidence that a diagnosis of autism is made four times more often in boys than in girls. To this end, I worry about what effect the influx of testosterone during puberty will have on Mike. Could it ‘worsen’ his autistic traits? Could it blunt his cognitive development? Could it make him more aggressive?

These are certainly possibilities that tend to keep us up at night, but are comforted in part by knowing that Mike is learning to be empathetic, and has a degree of self-awareness. Just like noticing the physical changes in his body, he knows when he becomes angry with others, and is apologetic and often embarrassed by it. He readily takes note of babies and younger children who are crying and wants to “make them happy again.” He has initiated greeting our neighbors, and has asked to play with some of the neighborhood kids.

Big change.

Not all of change is bad per se; his verbal and comprehension skills have markedly improved in school and his brief chats with us have slowly progressed to often conversational proportions. His teacher confided that she is thinking of submitting him for consideration for a self-contained class in a General Ed school (otherwise known as a satellite program). Mike has shown he has the capacity to do more academic school work, as opposed to being vocationally-inclined only. With this thrilling possibility brings change, and change always brings the possibility of failure and regression. Mike has thrived and become transformed at his current (out of district) school for the past three years after languishing in-district as the Special Ed department struggled to develop its resources and plans. The thought of returning him to a similar setting is tempering our enthusiasm but reinforces our feeling as parents that our son has more possibilities open to him now. I have quietly begun to think that Mike is inching toward the higher-functioning end of the autism spectrum.

His desire to someday become a paleontologist/chef/zoo keeper/book writer is not so far-fetched after all. Big change indeed.

It seems Mike is poised and ready for bigger and better things, despite all the pitfalls inherent with puberty. My little boy is growing up. I hope his mom and I are ready.

The problem with this is that my son Cameron is especially affected… since a sudden loud voice like that can send him running to hide under some blankets.

At least when that happens though, it’s instant. I’m done, he’s done… we go about our day. No worries.

The real issues come into play when it’s not done and over in an instant.

A positive is a negative

Cameron shows some pretty amazing resilience sometimes when it comes to being able to handle himself. Yesterday was a perfect example of this.

My boys were invited to a birthday party at an indoor playground where kids were free to just go anywhere and do anything. There were games all around, flashing lights and a huge network of netting and tubes to climb and go through.

A child’s paradise!

Cameron is in green

When we arrived the place was full which meant the entire place was just a wall of noise. An occasional crying child somewhere in the distance, lots of screaming and a bit of laughing mixed in.

Cameron and his little brother jumped right in and played just as any child should… it was quite nice to see. They had a lot of fun.

But I knew, I just knew that this was going to be too much. It was too much for me and I wasn’t right in the middle of it.

See, Cameron won’t just have a meltdown right in the middle of the place… instead, he’ll store all that pent up energy until he’s back home where he feels safe.

So, even though he can have a great time and handle himself quite well for quite some time… it comes with a price.

Solving the mystery

At first, this presented quite the challenge for us as parents as we’d have to figure out why our little guy was completely out of control for a day or two. To us, it would seem completely random that he’d just be really moody, extremely hyper and very much unwilling to listen to us or do the things we asked of him.

But it wasn’t random. It was actually very much a cause and effect situation (which most things are), where the effect was hyperactivity, irritability and lack of control… and the cause was over stimulation that no one had noticed.

What would happen is that my son would go to school and they’d have an assembly, or go on a field trip, or a party like the one I just described… something somewhere would happen and even though my son had a wonderful time and everyone thought he was just the most perfect little boy… there was actually a time bomb building up pressure, waiting to get home.

The biggest thing is, it’s entirely up to us as parents to solve that sort of thing too because no one else will ever see it. They only see the boy that holds it all together during the day.

Over time, I’ve come to recognize the clues though. For example, at that birthday party, when it came time for everyone to sit and have cake, all of the kids were excited.. but only Cameron bounced in his seat. Literally.

He had so much pent up energy in him, beyond what the other kids had, that he quite literally could not keep his butt on his seat. And while he was still quite happy and having fun, I knew that if he can’t keep his butt on his seat even after I ask him too, that it’s a sensory problem that’s been building up.

Something he just has to do for himself

This is one of those cases where, we as parents, could decide to just not go to those places so that we don’t have to deal with the after effects but that’s not very fair to him. He loves going to those places and doing those things.

We could read every book we have and talk to every professional we can find and try to set up systems and procedures to deal with the after effects at home in a constructive way.

But ultimately, this is something that he has to learn to deal with. I can help to guide him as best I can, help to calm him, focus his energies somewhere… but this is something that is likely to stay with him for the rest of his life.. unlike me.

And to be honest, I think he’s starting to get it. When he gets home, he’s still moody and hyper but he’s learning to take time for himself to go off and make believe something on his own. His little brother gets mad sometimes that he can’t go be with his brother but it’s obvious that it has to be that way.

When he’s given his space and allowed to get that energy out through pretending his favorite video games, pokemon or bey blade battles… what ever it is he needs to envision… it works for him. At least usually.

It’s great that he’s able to do that. And it’s even greater that he’s able to put it all aside in the moment and be “just one of the kids” when there is fun to be had.

It’s been hard for us to figure out and to deal with… I’m sure it’s been even harder for him… and we’ll always get people asking questions about it as it’s not quite ‘normal’… even by autism standards… but it is what it is and it works for us.

As if we didn’t have anything else to worry about with a child with Autism, having a child who literally towers over other children in a public venue is akin to putting a sign on his chest that screams “Look at me! I am different!” As much as parents with Autistic children will attest that they have developed thick skins, we yearn for times when our children blend in, if only for a scant minute or two. We are in fact okay with, and often celebrate our children’s unique traits and abilities, but are achingly aware of the public stigma of Autism.

Mike, as anyone who has ever met him will attest, knows everything there is to know about dinosaurs in general, and T-Rexes in particular. His room could be converted to a Jurassic Park gift shop if we ever needed a second income. His dinosaur-related DVD collection is better than most libraries. He knows how to find dinosaur toys, books, pictures and memorabilia on eBay, Amazon, Google, and lesser known websites. He has re-drawn the pages of a pirate book (“Captain Flinn and The Pirate Dinosaurs”) and replaced the human characters with his dinosaur toy friends (they each have a name, of course) with elaborate detail.

You get the idea.

So we progress through the show, which ends with a volunteer from the audience being asked to the center of the stage. None of the ‘little kids’ want to come up; some take a step forward, but quickly run back to their moms and dads. There are three; perhaps four kids in Mike’s age group in the audience that still hesitate at what might be in store up on stage. Mike has his hand raised patiently, waiting and hoping to be picked. His eyes never waver from the emcee. There is no fear, nor trepidation; no anxiety which often destroys the public outings of many families affected by Autism. For that brief instant, he stood out in ways those other children could only aspire to: he was without fear, and for that, he blended right in with them as they screamed with glee.

As much as dinosaurs (and to a lesser extent, crocodiles and other toothy animals) are a major focus for Mike, he is progressing; becoming more conversational, empathetic, and academic. For this we thank the tireless work of his teachers, and his brothers, and everyone who has connected with him. This outing also taught my wife and me that Mike will continue to teach us things about ourselves, and we can’t wait for more of those lessons.

This month, we’re taking the first steps, which seem so very trivial and yet, so huge.

First of all, we’re encouraging them to do some things on their own.. they can both get dressed on their own now, which is a great first step. Now we’re pushing forward with having them brush their own teeth, dry themselves after a bath and little things like that.

But now, the big one… getting their own juice!

This is a very scary one for one simple reason… one wrong step and it’s sticky, juicy, splash city all over the kitchen!

So what we did was visit the local dollar store and pick up a smaller jug. It has a smaller handle and is smaller over all.

This makes it a lot less heavy and much easier to get their little hands around.

Also, we moved their cups from being up in the cup/glass cupboard to down into the gluten free food cupboard under the counter. This way, they can go and get themselves their little plastic cups any time they want.

The pouring is still a pretty scary task but it is now so much more manageable for them and they feel so proud each time. Often, when they ask for juice and I give them the go ahead, one of them will rush off to pour glasses of juice for both of them because they’re so eager to be such big boys.

This is one little step closer to me no longer being a servant and one huge step closer to them being able to do things for themselves.

It’s also worth noting that Cameron is 6.5 years old while Tyler just turned 4…. and while Cameron is doing grade 2 school work while he’s only in grade 1… when it comes to the motor skills required to pour juice, because of how autism affects him, they’re actually pretty even skilled.

In a way, I kind of feel bad that he’s learning the things his little brother learns at the same time, when it comes to tasks such as this but at the same time, I do like that they get to learn them together and gain an even closer bond that comes with the success of independence.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.

————————

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

As the description says: “In this book, Donna gives Reese a voice to teach young children empathic understanding, acceptance and inclusion.”

Also, an interesting bit of trivia for those of you that have or get this book… the illustrations are done by Breanne Biggar but, one page, where the children are drawing on a sidewalk, you will see the wonderful art work of a young man named Devin, who has Aspergers. He was 6 when he made those drawings and you can read a bit about him at the back of the book.

The Book

The book is about a bunch of children all going to the park to play… but none of the children are the same as each other. This book explains very simply yet very clearly just how different each person can be from each other. Starting with the obvious, such as hair colour, height, weight and so forth, the book eventually gets into more distinct differences such as how some people are unable to walk (wheelchair) or communicate (talk)

The Story

While there really isn’t much of a story, it does take you along on a bit of a journey through the park. It’s kind of like people watching, but for children. As you go through it, you really feel like a child standing there while your mom or dad talks to you about what you see. And that’s how I felt, and I’m a dad. To invoke that kind of feeling in a reader means that the message is being delivered very well.

My Review

I read the book by myself while my wife read the book with my son Cameron. So I’ll give you an idea of what we both think.

For me, I found it quite intriguing that autism is never actually mentioned. It’s also quite brilliant, in that it’s just another one way that everyone is different. So rather than single out any specific disorder or ailment, you’re left to fill in the blanks as you read about those that can not speak, see, hear, walk and so on. These children on the pages all have different strengths, weakness, colours, sizes…  and they all have smiles.

I can picture my son in those illustrations just as I can picture other children that I’ve met through my life or that I know right now. They can all fit into these pages.

More so than that, I can see myself in many of the pages. As you read about how some children are shy, some aren’t, some don’t like to do some things, other do…  and some children cry because of how hard it is to make other people understand them… you get it. Both as having memories of that but also in understanding where her grandson as well as our own children are coming from.

My wife said:

The book gave a good sense of accepting those who have differences and allowed Cameron the opportunity to look passed himself and see others and accept and want to help them. We were able to talk about the book and explore ways to make people in our lives feel more welcome and loved even though they have differences. 

Together, we both felt the only criticism we could make is that it’s a bit of a dry read, in that there is no story and comparing differences makes for a bit of repetition. Our four year old lost interest half way through. Cameron, however, did not.

But it was never meant to be a story and no one will ever fault a four year old for not grasping the differences of all people. So while it may not make the best bedtime book ever, it does make for a wonderful story time book that really helps to reinforce acceptance within us all.

If more people read this book to their children, there would be far less bullying in the world.

You can buy Different Kinds of Special from Amazon.com for just $19.95 in paperback and read more about the book at http://lostforwordspress.com/

There is certainly nothing wrong with this, it is natural. It is a scary thing to have happen to you and to your child.

Less than perfect

For many people, that feeling of disappointment and fear of the future passes. Maybe not entirely, but for the most part. They learn to accept that their child is how they are and that they’re perfectly wonderful just the way they are. It’s certainly not without it’s struggles but parents take each day as they are and love their child unconditionally… no matter what.

Then there are those parents who hold on to that disappointment and will always fear the future. They see their children as damaged or defective and seek vengeance (or justice) on those who are responsible. They will never accept that their child was meant to be how they are.. and who they were meant to be was robbed from them.

I don’t know who is right and I don’t know who is wrong, I don’t know if there is a villain to bring to justice… but what I do know is that no child should ever feel that their parent sees them as less than perfect… much less broken or defective.

Few exceptions

Even a child that does not speak, does not engage their parents, does not play and has all the other “severe” indications of “low functioning” autism can sometimes surprise us. The right tool, device or incentive can help some of these people “find their voice” and show the world what they’re truly made of.

It makes many people think that a lot of autistics have it within them to do this. You, and they, just have to find a way.

If true (which I believe it likely is, at least for some), then the things you say, do and even think will be picked up and even understood by your child. Even more so if your child is able to express themselves and communicate better.

Even if you try to hide it, if you truly believe that your child is broken or defective, it will affect your child. Perhaps the parent is a little less affectionate, perhaps they’re a little less encouraging… these things will resonate with your child. It may be on some subconscious level or it may just be a hint of self doubt that lives within them into adulthood.

Few children are able to excel despite a parent’s disapproval, few children are able to truly be self confident when their own parents do not believe in them first. Some children can overcome that but doesn’t a child with autism have enough to overcome already?

Unconditional love

I’m not saying that you are wrong if you fight for a cure, I’m not saying you’re wrong if you are fighting to put a stop to what ever you believe is the cause of autism… what I am asking for is… please stop seeing your child as broken.

Accepting your child for who they are, right now, right in front of you… it does not mean giving up. It certainly doesn’t mean you don’t care. All it means is that you love your child, through and through, 100%, no matter what.

Know that your child is perfect, know that your child is who they are and encourage them to always be themselves. Know it.

Don’t just think it and don’t just make it something you say so that you can feel better about yourself for making them feel better about themself… you need to believe it. You need to know it.

This is your child and your child deserves that much from you.

Once you believe it, the real miracles start to happen.

The documentary that you are about to see was not filmed in the 1940′s although you will think it was. This film, out of France, was released in September, 2011 by Sophie Robert.

In just 52 minutes, you will see the culmination of 4 years of investigations among psychiatrists and psychoanalysis practitioners in France. Robert met over 40 professionals in putting this documentary together and yet, now that it is complete, 3 of those professionals are suing Robert in an effort to have the movie banned by the court.

I don’t want to give it all away but you will see Autism described as madness, a result of incest (or incestuous needs), a mother’s failing, a father’s failing and so much more. You will see a family that lived with and against this system.

This is a french film which means that English subtitles had to be added and they can be difficult to read at times. But it is still very much worth it to watch this film.

Awareness is more than just making the world understand Autism… it also means putting the past behind us and making things right. And watching this, while it may be painful or frustrating, it is necessary.

THE WALL, OR PSYCHOANALYSIS PUT TO THE TEST FOR… by runmagali
(If it does not load, hit reload/refresh or click the link above to view)

Now that you have seen the film, please check out http://www.supportthewall.org/ where every effort is being made to stop the abuse of autistics in France.

Starting to get international attention, they are planning on holding a press conference on January 26th in New York City to launch an international petition against the abuse of autistics in France.

Coincidentally, that is also the date that Sophie Robert will receive her court decision… will the movie be banned or not?

Share this movie. The more people that know the truth, the sooner this “psychoanalysis” can be stopped.

Humans are social beings. In comparisons with animalia, humans are regarded like the primates for their social qualities. But beyond any other creature, humans are adept at utilizing systems of communication for self-expression, the exchange of ideas, and organization, and as such have created complex social structures composed of many cooperating and competing groups. Human groups range from families to nations. Social interactions between humans have established an extremely wide variety of values, social norms, and rituals, which together form the basis of human society.

This makes me wonder… what about the people who are not adept at utilizing those systems of communication for self-expression? Is this why some people instinctively see special needs people as less than human somehow? Is this why, when a person is unable to use those systems, to communicate or demonstrate self-expression, they are thought to be “in their own world?”

It sounds a little harsh, to think that, if a person isn’t social, that society would view them as “less than human”… but really, this shouldn’t be new to anyone. Aristotle thought this way too.

“Man is by nature a social animal; an individual who is unsocial naturally and not accidentally is either beneath our notice or more than human. Society is something that precedes the individual. Anyone who either cannot lead the common life or is so self-sufficient as not to need to, and therefore does not partake of society, is either a beast or a god. ” 
― Aristotle

Granted, he included the “more than human” but that’s likely in reference to the savants or prodigies that lock themselves away to work tirelessly on what ever it is that they do.

I mean… a beast or a god? Really?

No wonder this sells so well!

Says Who?

Personally, I have always questioned: If everyone is different, why would everyone have to have friends?

Think about it. Every single person is different. All seven billion. And yet poets and story tellers continue to tell you that everyone needs someone to love and everyone has to have friends.

Why?

Why can’t a person be ok with not having friends? Where did the term “hermit” come from if there aren’t people out there who prefer to be left alone?

Feeling Lonely

Everyone feels lonely sometimes. People that have more friends than they can count can feel lonely sometimes. Is it more likely for a person that has no friends? Sure, but perhaps there’s a reason for that besides the fact that they are alone.

Think about it… why would a person who prefers to be alone be lonely because they are alone? It doesn’t make sense.

In my past, when I had no friends because I was working so hard, I felt very lonely and very depressed. But it wasn’t because I had no friends.

I felt that way because I was conditioned to. Every poem or story I read, every movie I saw, every person I talked to would tell me that I had to have friends…. more so, I had to have love.

Not one person or piece of entertainment told me that it was ok to be alone. In the movies, the hermits would eventually find a family or a place to live and “finally be happy” with others. The others would either eventually commit suicide or “remain alone for the rest of their days”…  ugh.

Be Yourself

Other than highschool peers, people will tell you to be yourself. That you’re unique. You’re different. There isn’t another person out there like you.

But you have to have friends, like everyone else, because everyone else does… or else you’re “beneath our notice”.

It’s very contradicting and it’s very belittling and it’s very confusing.

Sure, a lot of people without friends do not choose for it to be that way and therefore, have every right to feel lonely and a little down. But some people want to be that way… they eventually find themselves depressed and aren’t sure why.

In either case, don’t listen to Aristotle… don’t listen to the media, entertainment or poets… it’s ok to have no friends. It might be temporary. It might not. Depending on what you want.

But be yourself.

Who knows, you may think you want to be alone only to find that you really don’t… once you are confident enough to be yourself… confidence attracts… friends!

But you are still very much human, friends or not… love or not. Want it, don’t want it… it doesn’t matter, just so long as you are yourself. Friends and love, they’re out there. I won’t think any less of you for wanting them or not wanting them.

You don’t have to have friends to be happy but it certainly helps to be happy if you want to have friends.

So either way… be happy for being you.