Integration – Why is it needed and why is it so hard?

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.

integrationIntegration is the key to helping him to keep that comfort zone as a fall back, should he need it, but also prevent him from becoming dependant on it because it simply won’t always be there.

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

Hidden benefit

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.

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Empathy and Autism are like Superman and Clark Kent

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.

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.

Superman LogoSuperman

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.

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Autism or not, mediocrity should not be a goal

mediocrityAh 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?

Autism

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.

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Forgiving the volcanic emotions

If you are familiar with Autism in the slightest, you’re likely familiar with the term “meltdown.” There is no specific definition for this in terms of an Autism behaviour so I’ll give it a go:

A term describing a complete lack of control or reasoning during a temper tantrum as a result from prolonged or overwhelming stress

That’s how I would define it, I think it is specific yet vague enough to explain what it’s essence is. The problem is that it has more specifics such as what causes the stress, such as sensory overload, fear, anxiety, frustration and so forth… which means that there are quite a few things that can trigger a meltdown.

Lack of control or reasoning

volcanoThe key point, I think, is the “complete lack of control or reasoning” portion of the definition. Again, this sounds specific but in a sense, it’s actually kind of vague and I’d like to explain why.

When you hear “complete lack of control”, you tend to imagine someone flailing around, screaming and maybe even writhing on the ground but it’s not always that way. What you’re picturing, most likely, is a child.

However, as those children grow older, that type of meltdown will become less likely, seeming far more controlled yet still fitting the definition that I laid out before you.

As an Autistic gets older and they develop language, structure and maybe even a life of their own… they can gain a lot of control over their emotions and thus, learn how to avoid meltdowns. Also, when they do happen, they’ll look entirely different from what you pictured with the child on the ground.

An adult, or even an older child that can speak, may lash out verbally, maybe even physically… they may say the absolute most hurtful thing that enters their mind, they may hurt themselves, they may seclude themselves away from all others, they may even have what would look to us like a nervous breakdown.

For the most part, all of these would appear to defy the definition. People can stop themselves from saying hurtful things or from hitting someone or from hurting themselves. People can avoid a nervous breakdown if they calm down, breath deeply, relax… people can seek out help rather than become isolated.

These seem like choices to us because as we develop, we learn how to recognize these situations and make those choices.

That’s not always true for an Autistic.

A meltdown is still a meltdown even if it seems like something we’d have done by choice. An outburst, a hateful response, violence… these things may be happening completely beyond the Autistic’s control and reasoning.

When this is the case, when it is beyond their control, a grieving period usually follows where there is extreme levels of guilt that they have to get through.

And you and I would think that if there is that much guilt, they’d try harder to not do it next time, or “learn from it” but you have to understand, that’s probably not possible.

I titled this post “volcanic emotions” for a reason… if you can picture a volcano where pressures build and build and build for a while and then finally hit the breaking point where all that pressure is released into a huge explosion of ash and lava… you can then also picture what is happening inside many of these people with Autism.

Young and old, the pressures of stress tend to build and grow until eventually they’re released in an explosion and that explosion is a meltdown. Whether it be flailing around on the ground screaming or lashing out with hurtful words and aggression… it’s beyond their control.

Doesn’t therapy help with this?

Yes and no… it helps. The real progress is made when the person is able to recognize the rising pressures of the stress and take measures to avoid it reaching volcanic proportions. This is a way to avoid it from happening, not from controlling it when it happens.

Why isn’t there a way to control it when it happens? Well, I’m not a scientist and even if I was, I wouldn’t bore you with scientific terminology however I will say that recent studies have shown actual physical differences in genetic make up, pathways, and more within the brain of those with and without Autism. Physical differences.

That means their brains physically work differently. That’s not something you can change with therapy.

Forgiveness

Therapy is important, avoidance is important… we all function so much better without stress, without nervous breakdowns and certainly without meltdowns in our lives.

If we can’t control ourselves when it happens, then it’s certainly important to learn how to avoid it from happening at all.

However, in those cases and situations where it’s unavoidable and it does happen.. it’s important to forgive those that went through it as well as to forgive ourselves if we were the ones experiencing it.

We can’t be mad at those that did or said something while out of control nor can we be mad at ourselves. Actually, we can be mad, being mad is quite alright and healthy. After all, those things did hurt. However we must also be able to forgive.

Whether you hurt someone or someone hurt you, you have the capacity to forgive… especially if they feel guilt, especially if they still love you.

It’s not an easy situation to be in, if someone has meltdowns regularly or even rarely… you feel that they should stop after a certain amount of time but they don’t. And it begins to build pressure and stress in yourself… making for two sources of stress coming together.

If you can’t understand and forgive… for their sake and yours… the pressure will only continue to build until a whole new volcano of emotions erupts.

 

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A special request, an Autism Birthday Wish

birthday cupcakeMy birthday is coming up, June 5th, and I wanted to ask a special request of you.

No I don’t want presents or money. I don’t really even want anyone to know that it is my birthday to be honest. I’m quite content with just going about my business.

However, there are a few things that I’d like for you to do for me, if you’d be so inclined. I’ve listed them below and I ask that you do one or more or all of them.

Donate to the charity of your choice

It would mean even more to me if it’s an Autism charity but it’s not necessary. If you have a favourite charity that improves peoples lives, that really helps people and is working hard to make a real difference, please make a donation.

I’m not asking for any specific amount, nor for you to do it in my name. I’m not even giving you a charity or list of charities to choose from. But to just do it because I asked you too.

Volunteer your time

Much like charity, donating your time is a wonderful way to help out and make a difference. It need only be for a few hours, it can be in any place that works to benefit people.

Just set aside some time one day and dedicate a little time to volunteering at a place that will have you. It doesn’t even have to be on June 5th. You can do it one long week-end where you get an extra day off anyhow.

Don’t let the negativity out one time

This is something that I practice as much as I can and it really does make a difference in your own personal life.

What I do is, each day, I catch myself before I say, write, share or even think one negative thing. Whether it’s me thinking that I can’t do something or being upset with someone else for what they said or did… I stop myself, realize what it is that I’m doing and stop myself.

Instead, I think I can do it, I am not here to judge and I don’t have to get into an argument just because someone on the internet was wrong (that one is hard!).

One time, when you feel down on yourself or get mad at someone in the next few days, or each day if you can…. think about me and think about how I asked that you not do it.

Conclusion

I don’t need anything for myself. What I really want is for people to stop fighting, for people to work together and for people to pitch in a few of their off hours or a little money.

You don’t have to tell me you did it and you don’t have to do it in my name. Just do it and feel good about doing it.

That’s what I like to see most.

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