Tag Archives | love

Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

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

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

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

Not part of a community?

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

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

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

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

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

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

What one has vs what one does not

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

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

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

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

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

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

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

When it’s not you…

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

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

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

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

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

What’s in a voice?

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

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

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

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

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

In conclusion

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

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

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

Comments { 7 }

Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

Comments { 13 }

Autism can’t stop my son from being a great big brother

By on September 9, 2011 in Autism

This year, my younger son Tyler (3yrs old) started JK… his first time in school. He’s so very excited for it because he’s watched his older brother, Cameron (6yrs old), go off to school for 2 years now.

And even though Tyler is still only 3, he’s more than ready. He can count pretty high, knows his alphabet, goes to the bathroom on his own and most of all… he’s just so crafty. He loves to paint and build things… school is so perfect for him.

Still though, even when it goes perfectly for the most willing of children, school can be overwhelming for the first little while.

Still bragging about this school

Cameron

Cameron - Big Brother

I’ve written many many times about how I picked up my family and moved over 850km away to get Cameron into this school because of their amazing Autism classes… this year, Cameron is back for his 3rd year (grade 1 this year!) and he gets the same teacher, the same teachers assistants and some of the same classmates.

A couple of children have gone off to IBI or to another classroom but his familiar friends are still there. Cameron is doing exceptionally well thanks to this.

There is another added benefit though, which I have not discussed, because we had not yet reached that point but this year is the year… his little brother gets to attend the same school!

It’s a normal, run of the mill public school but they have 4 special classrooms especially designed and equipped for children with Autism.

This means that while Cameron is in his class of 4 children (including him), with 1 teacher and 2 aides…. Tyler, his little brother, is across the hall!

Overcome Autism? No problem with the right motivation

Cameron has never had a huge problem with hugs or showing his feelings but then again, it’s not as natural for him as it would be for most other children either though.

Trying to get that out of him where he’s not quite as comfortable is even tougher… like say, at school.

But that doesn’t stop him when Tyler needs him!! Oh no.

Tyler knows that his big brother is across the hall and when the anxiety gets too much for him, he knows to ask his teacher… so his teacher takes his hand, walks him across the hall, Cameron stops what he is doing, gives his little brother a big hug and tells him that he’s ok… and Tyler goes right back to his class, feeling so much better.

This is huge!

Cameron told me that he remembers when he first went to school… for the first 6 months or so, he had a very hard time because he “didn’t feel safe.” I told him that sometimes, Tyler might feel that way too but mom and dad can’t be there to help him.

Cameron stepped up to the task in a huge way and is genuinely eager, excited and willing to help out his little brother. He wants be the big brother that Tyler needs.

Not a surprise to those that know him

Tyler

Tyler - Ready for his first day!

While I am excited about this, I’m not surprised.. and I’m sure those that know Cameron won’t be surprised by this either.

Still though, as a parent, I’m still so very proud. Also, if you’re a parent of a child with Autism, I’m sure you can understand that even though I’m not surprised, I’m still… well, I wasn’t going to believe it until I saw it.

Cameron amazes me every day, as does his little brother, but I still put no expectations on him before hand. He won’t disappoint me if he doesn’t do it, he won’t surprise me if he does do it… but it’s never necessary because sometimes, he just doesn’t do what some might expect of him.

And while it doesn’t surprise me, what does get me is that he’s so willing to stop what he’s doing… to break routine… to show affection right there in front of everyone… and to know and understand what his little brother is feeling.

In that moment, when his brother needs him most.. he is not autistic. There is no Autism. There are no teachers. There are no parents.

There is only Tyler. His little brother. And he loves him.

Comments { 3 }

What does Pikachu have to do with Autism? Allow me to explain.

By on August 19, 2011 in Autism

My son has recently gotten on board with the Pokemon craze that many of us parents so desperately try to avoid. It’s costly and annoying and the effect it has on children borders on an addiction.

Still though, I find myself strangely compelled by it myself as I found myself having a lot of questions about it. The answers, I’ve discovered, are really quite inspiring.

pikachuWho is Pikachu?

In the cartoon world, Pokemon are essentially the animals of the planet. Water, fire, plants, bugs, sky… you name it. Where we have living creatures on Earth, there are living Pokemon in their universe.

Pikachu is one such creature… he’s a cute little mouse like Pokemon that is an electric type, meaning that he can create thunderbolts and other such electrical attacks.

In the cartoon, trainers capture these Pokemon and train them to do battle. The Pokemon battle each other but are all generally very friendly. They battle, one wins, one loses… they celebrate after and go on their way.

What makes Pikachu the special one?

Well, to start with… Pikachu isn’t very powerful. In fact, there’s another Pokemon called Raichu that is actually an “evolved” version of Pikachu… a level up, if you will. And even Raichu is not very strong compared to many others.

In fact, there are some Pokemon that are believed to have created life, the universe and the rest of the other Pokemon. Some of them are deities over dimensions such as space and time.

So why does Pikachu get all of the attention? Well, he has one quality that the rest of the Pokemon do not have… a never quit heart the size of the moon.

Repeatedly in the cartoon and especially in the movies, you really get a sense of just how tenacious Pikachu really is… how he really would do anything for his trainer, for all people and for all living creatures. Over and over again, there are situations where all hope seems lost and this little mouse like creature just never gives up.

In one movie, Pokemon were pit against each other… not just to battle for the sport of it, but to hurt each other… and this one lone Pikachu refused to fight. He took hit after hit…. never once attacking back.

The truly amazing thing, once you get into the series, is seeing how this brave little guy with such a big heart influences his trainer… Ash. Ash is an egotistical little kid who thinks he’s the best… who thinks he can do no wrong… can never lose… and as the series goes on, you can see him become the human equivalent of Pikachu… a very brave, very determined, a very modest  boy with an over sized heat.

Wait, so what does all of this have to do with Autism?

Well, first of all, did you know that Pokemon was created by a man with Aspergers?

On top of that, I can’t help but feel a connection somehow… when I picture this modestly little, somewhat weak Pokemon besting some much stronger adversaries, becoming the most loved out of all of them, all around the world…. being a source of inspiration and wisdom for the one that is supposed to be training him….  I see a bit of that in my son.

My son might not be the strongest, fastest or smartest in the world… in fact, he might have a lot going against him, what many would see as weaknesses, but I know that he can over come any adversary or beat all odds so long as he never gives up and keeps his heart full of love.

My son isn’t Pikachu and I’m not his trainer, but he is my source of inspiration and wisdom… he is the one that has shown me how to be a much better person by being more like him.

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The risks associated with having another child

By on August 15, 2011 in Autism

Why did I leave Autism out of the title?

Well, that’s because there are far more risks to every childbirth than just Autism. There’s the chance of a still birth, cancer, down syndrome and a whole host of other disorders, illnesses, ailments and can have a child growing up in a hospital somewhere. In some cases, a death sentence. Some children are born with cancer that kills them 2 or 3 years after birth.

What a harsh way to start a blog post right? I know. But I think that sometimes we Autism parents can forget the realities of our situation… there are people out there who have it so much worse.

The reason for this post is that many people have concern over recent findings in a study that I covered earlier today on this blog: Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

riskThe risks of any younger sibling

That being said, that there are a large number of risks, you have to realize that any and all of those birth risks are possible in all births. That means, the first child you have has a risk.

Knowing that, any child you have afterwards has an increased risk.

How do I know that?

Well, if there’s a 10% risk of a disorder at childbirth… then having 2 children means you have a 10% chance and a 10% chance.. a 20% chance.

That’s actually not quite right, satistically but for the argument of this article, it’s close enough.

You essentially double your chances by having a second child because you took the risk twice. That increases every time you have another child.

That’s for anything and everything… not just Autism.

What does it say when you don’t take the risk?

So you don’t want to take the risk of having a second child with Autism? Have you ever asked yourself: “Why is that?”

Let’s not pretend that having children with Autism is not hard and it certainly does cost a lot… we all know that.

But is that the real reason? Or is there something more to it? Let me put it this way: If you did have get pregnant a second time and discovered the child would be born with Autism, would you have an abortion?

Take some time to really think about it… is there some level of denial there? What does this say about your acceptance of your child with Autism?

Conclusion

For me personally, I love my son with Autism, not despite Autism. I think he’s amazing and has taught me a lot more in 6 years than I did in the 30 years prior.

Having a second child with or without Autism just does not seem like a risk to me.

I’ve had a few people on Twitter ask me what I thought of the recent findings… they asked me if I would take the risk or avoid the risk.

My response was this:

Decide whether or not to have another child with your heart, not your fears.

Ask yourself if you love your child. Ask yourself if you love your family. Ask yourself if you want to add another beautiful child to your family. Ask yourself what you heart is telling you.

Weigh the pros and cons, I’m not saying that there are no financial responsbilities or unforeseen risks that may arise but be aware that those finances and risks are always there, regardless of siblings or studies.

If no one had children for fear of the risks.. there would be no children.

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