Not puzzle, nor piece within
My son is bone and blood and skin
Though he cannot stand the light
In him his brilliance shines so bright
He is himself, so rare, so true
Unlike others yet mirror too
In him I see, I could not before
A new spectrum of life, a new way to soar
He showed me a difference, a new way to see
He taught me acceptance, a new way to be
The son became the father, this lesson I have learned
For he taught me that compassion need never to be earned
And on his birth, my life of fatherhood began
But as he lives and as I grow, I learn to be a man
For who I am and all I know, is reflected through a prism
He wouldn’t be, or I you see, were it not for his autism.
Not puzzle, nor piece within
Sometimes a blog post just can’t properly convey how a conversation would go, so I decided to put together this little video as an example conversation between two parents.
I’m quite happy with how it turned out and hope to make some more soon. It’s less than 4 minutes, I hope you like it.
When I stop to think about it, Cameron really does have quite the support network now. My wife and I do our best but now he also has his teachers and therapists helping and then there’s also family and friends that have done so well at taking the time to learn and understand him too. It’s very little wonder that he’s been doing so well with so many great people giving him the guidance he needs.
But yesterday, at the IEP meeting with his school, there was one area of his development that we all realize he is ready for, that he needs help with and while the school is doing a good job of coming up with a plan on how to accomplish it, I quickly began to realize that it’s entirely dependant on Cameron himself and an entirely new group of people…. the other children at his school.
Why is it needed?
Cameron would do well and excel very rapidly were he to stay confined to his classroom where he has his friends and teachers that he knows so well. A comfortable setting and a set routine. He’s responded so very well to this and has reached many grade 1 milestones in his education before he even reaches grade 1. I’m proud of him, but now he’s ready to be pushed out of his comfort zone.
Eventually everyone leaves elementary school. High school is a scary place. The work force is even scarier than that.
There is a very real danger that if he becomes too dependant on his comfort zone, not only will he no longer excel once removed from it but he could regress completely… something akin to a nervous breakdown.
If you read my blog, you know that we uprooted our family, sold our house and moved to find the school that he attends now. It’s because they have a wonderful Autism program integrated right into the school which means that, while a regular every day normal school, it does have some classrooms dedicated specifically to Autism students. Cameron is in one of those classes.
A very very big part of the reason for our move is that it has this dichotomy right in one building. He gets the best of both worlds every single day. When he wasn’t ready for it, he stayed in his class. When he is ready, he leaves the classroom to find the other students.
This, we believe, will be extremely advantageous to his development.
Why is it so hard?
How could it be so hard with such a perfect school? Well, the problem is that every child is different. And if there’s one thing that a school requires to function properly, it’s structure. So how do you build structure when each child’s needs are completely different?
Many of the children simply aren’t ready and so, they’ll stay in the safety of their class until they are. Others, such as my son, are ready. But being ready doesn’t mean you can just throw him into a regular class.
Some children are ready to “play next to” other children that are brought to their safe zone (their class room), some children are ready to “play next to” other children in some other class room, some children are ready for limited interaction, some children are ready to actually play together. There’s literally hundreds of ways to measure what a child is and isn’t ready for.
Like all things, it’s something that takes practice, patience and time. Which means introducing the child to other children, having them come to the safe zone, having the child leave the safe zone, having them try to talk, answer questions… and so on and so forth. It’s a slow process.
This sort of thing doesn’t just happen on it’s own though. The child needs supervision… support. This requires a human body that knows him, knows his queues and can recognize when he’s overwhelmed or when he’s doing well.
It also means having a person, or people, for each and every child that is ready plus it requires them to recognize, remember and be an expert at each stage of integration so that they can know the child’s progress and their next step.
This all costs money, it requires an attention to detail, it requires being able to cope and deal with the set backs when the child can’t handle it… it also requires a reporting system so that the school can determine what is and isn’t working and how to improve the system.
It’s a very complicated system that seems so very very simple to us parents because our focus is on one child. For us, who cares what system is in place. Just give our child someone to learn to be social with!
If only it was that simple
For me, my son comes first. Both of my boys do and always will. However, a big part of me looks globally, to all people, especially those with Autism.
And to me, integration at a very young age has a much more wide spread benefit and it’s not to our children with Autism. It’s to those children that are being introduced to them. That are being encouraged to be patient with them, to help them and support them.
When I see one or two children my son’s age say hello to him, when I see them take their time and wait for him… when they help him with something he struggles with, to me… that’s global progress. Not just my son, not just those children but for all people.
That’s where acceptance is most powerful… in our youth. If we can have a 5 year old helping a 5 year old, as they get older, it will never even occur to them to think of someone different as weird, bizarre or a freak. The reactions and instincts of their peers and even their own parents before them will have no bearing on these children as they will have grown up with a sense of understanding and acceptance that will dominate any pre-existing notions.
Why is integration needed? Well, it helps my child with Autism learn to be social, learn to communicate effectively and learn to live an independent life along side those that he may never understand but that’s just one benefit to one person.
More so than that, and even more importantly than that, on a much wider scale, it allows his peers to accept him for who he is and to help him when he needs it, rather than to judge or ridicule him.
My son has a great support system. He has so many great people helping him and it comforts me. But it’s when I see one child helping another… that’s when I know my son will be alright.
Have you ever noticed that you never see Superman and Clark Kent in the same place at the same time? That’s rather odd, isn’t it?
They both exist, although you only see Superman from time to time where as you see Clark Kent quite often. They definitely do seem quite different though… Superman holds his shoulders up high, stands tall… seems to handle people well. Clark Kent on the other hand tends to slouch, keep his head down and isn’t exactly the coolest person in the group.
I got to thinking about it, if my son was that guy… then empathy would be his Superman persona and his Autistic traits would be his Clark Kent.
My wife and I have had a very trying couple of weeks… mounting stresses over mounting stresses. Nothing life threatening, we still have our health however, eventually, stresses have a way of breaking you down.
This is what happened to my wife. Eventually, one day, it became too much and she began to cry.
As I held her, my two sons sat on the couch… playing games.
After a couple of minutes, Tyler, my 3 year old without Autism, put down his game and came to us. He put his arms around us and asked his mommy what was wrong. “Mommy, why are you crying?” he asked.
Meanwhile, there on the couch sat my little Clark Kent. He knows his mom is crying. He knows that there must be something wrong, but he doesn’t even give us a second look. He just sat there, playing his game.
From time to time, I get to see the superhero emerge… when he’s needed.
Most of the time, it’s for his little brother. When Tyler is hurt, or upset… Cameron is there. Whether it be due to actual empathy or Cameron not wanting to get into trouble…. he consoles his little brother. It’s not always for one reason or another but it can be hard to tell which is which sometimes.
There’s something you need to understand about Clark Kent… even though all you can see is the slouched shoulders, lowered head and introverted nature, Superman is in there.
Clark Kent won’t stand up tall but he’s still bullet proof. You just can’t see it.
Looking for Superman
Nobody looks for Clark Kent. When someone is hurt or in need, nobody expects Clark Kent to answer. They want Superman. And it can be so disappointing when he doesn’t come.
When Cameron sat on that couch, it was disappointing that he didn’t come to his mother. Not surprising, but disappointing.
We are never upset by it though, never judging. We understand… we know… empathy is in there. Inside that little slouched boy with his head down, playing his game… Superman is in there.
He didn’t give us a second look… but he did look once. He did show his concern, in his way.
When you don’t know that Clark Kent is Superman, you don’t look for Superman within him. But when you do know, you can see it plain as day. You no longer see the glasses or the posture… you see Superman, in a disguise. You see him look to the danger and make the decision to show up as Superman, or to let it be as Clark Kent.
I see empathy in my son. I see it every day and I see him make those decisions every day.
Never assume something isn’t there just because it’s well disguised. When he’s ready, Superman will be there.
Ah mediocrity… the desire to be average, just like everyone else. We feel so down on ourselves but not greedy enough to want to be better than anyone else… just to be in that nice safe middle ground where we consider ourselves an average person.
Is there really such a place? If there is, does that “average person” place change when the majority of people have economic struggles and unprecedented levels of unhappiness and even depression? Is that place really what we’re supposed to be shooting for? To be average?
Ever stand around with a group of people talking about “kids these days” and how it doesn’t matter which government party you vote for, “they’re all the same”… did a single one of us ever think it was ok that billionaires got even richer while everyone else foreclosed on their house?
Is that normal? Is that how society is supposed to be? Do I really want for my children to grow up to be “normal” or to strive for mediocrity in the midst of all of that?
The sad fact is that for many parents of children that have Autism, that’s exactly what we wish for. For our children to have an equal chance, to have a normal social life… to have a chance at happiness with friends and even a family of their own.
Autism sometimes leaves a child unable to speak, use a toilet and so forth… they can be quite aggressive, prone to outbursts and certainly unable to maintain a friendship.
It’s easy to understand how a parent would wish for them to simply have what others have… a chance to be average.
Settling for good enough
There’s an inherent disadvantage in shooting for “just good enough” in that, if it’s your target… you could miss by a little bit and never reach it. Where as, if you shoot for so much more than that… if you don’t make it, you’ve still far surpassed “just good enough.”
Put it this way… if you aim for a 10… and get 9, you were close. But if you shoot for 50 and get 35…. well, you’re not really even close but aren’t you glad you didn’t shoot for 10?
I know, that’s incredibly simplistic but most anyone who’s put those methods into practice will tell you that this kind of mindset does work. It does force you to push harder than you have before.
In the case of Autism, you may get your child into therapy once a week, you may try to get him a teacher’s aid if funding is available…. where as, if you decide to shoot for so much more than an average life.. you will get on that phone, show up in government buildings weekly and have letters written daily in the mail pushing for a special education, separate therapists handling separate areas of development bi or even tri-weekly.
You don’t have to spend a fortune either… just have that desire, that hunger… that need to push for so much more than mediocrity.
It’s not that easy
When the average person begins learning business… they find that they need separate courses in management, finances, economics, human resource management and the list goes on and on.
The question is, do they start on this path with the intention of having a business that earns them minimum wage like their friends make… or to have a successful business and live a comfortable.. maybe even high class lifestyle?
The point is, nothing worth having is easy. It takes a life time to get the life’s worth of experiences to get yourself into a position to have a better life than the average person. These days, even winning the lottery won’t get that for you… most lottery winners claim bankruptcy within five years of getting their winnings. Why? Because they don’t have the life skills/experience to know how to manage that new lifestyle.
But I don’t care for all that
I hear ya, I have never cared for being rich myself but I sure would like to have enough money to be able to buy things I need without having to worry about whether or not I’ll still have enough for rent.
Truth be told, I’d love for Cameron to have an equal chance just like everyone else as well but that’s not my goal. I know there’s greatness within him… and I don’t know when or how it’ll show itself… I honestly don’t even know if it ever will, but it’s that greatness that I’m in search of.
If I never give up on that, if I always work towards that…. then one day he’ll far surpass mediocrity and I’ll have either reached the goals I had set out for him or I won’t but I’ll be proud of how far he was able to go.
I up rooted my family and moved to where I knew there would be teachers and a school system that would support him. I gave up my house and my job and friends and even my family to get him here… not because I want him to be average.
He was 3 and didn’t say a word…. but mediocrity wasn’t what I wanted for him. A lot of therapy later, working with him ourselves (his mother and I) and some radical sacrifices (giving up our home, moving and even giving up other things to afford therapy), he’s now speaking quite well and even reading three and four letter words. He’s even doing addition. He’s almost 6 now, starting grade one next year. He will surprise all those people who said he’d never have a “normal life.”
You don’t need to shoot for riches or to be the next great thinker for the history books… but don’t shoot for being average either.
Everyone is capable of so much more. Even if it may not seem like it right now, the potential is there. It’s up to you to never give up on it and it’s not going to be easy. But don’t feel guilty for shooting for the stars.
The Autism will always be there, in our children…. but so will their potential… so will their greatness.
- What to say and not say to a parent that has a child with Autism May 30, 2011
- The Jenny McCarthy-Autism paradox August 8, 2011
- Jenny McCarthy announces that she will pose nude in Playboy again “for autism” May 19, 2012
- This is a plea to the Minecraft community from the autism community for help on April 2nd. March 19, 2014
- Resenting or even hating a family member with Autism November 30, 2010
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