Tag Archives | support

The best part about the Autism community is…

One could argue that the Autism community is strong, but really it’s quite divided… one could also say that it’s very passionate but that passion is often what causes the division. One could say that it’s the amount of information that we have available and even make available ourselves but all too often, that information can be misguided, incorrect or down right deceiving.

I think, the one element within the Autism community that is truly what makes it great is the support. No matter the differences, no matter the disagreements… we all find a way to console each other, uplift each other, give advice to each other and even, when necessary, donate to one another.

Recently my wife’s laptop died which forced me to shift a desire into a need… I wanted an iPad for my boys but never made it a priority but when my wife no longer had a means of doing her work (online support), we needed to get her back online. And thus, the iPad became a need. So I made a donation page on my blog which resulted in our getting an iPad just a short month later.

What’s truly great about this is that none of us have much money, we all have therapy, travels, diets and other things that take up a good chunk of our money but when someone within our community needs it, we all find a way to help out with an extra $10 or so. And that is never lost on the person who gets it… it’s never forgotten the sacrifice that it is to those that could have used that money themselves.

For a friend

Living with LoganCaryn is the blogger at Living with Logan and tweets as @ihave7monsters… this name being specifically chosen because she is the mother of 7 children. One of whom, Logan, has Autism.

Since starting her blog and becoming active on Twitter, she’s done quite well for herself in getting a readership but she’s still needing to take it to the next level. For that, she’s hoping to get some help to go to BlogHer, a convention specifically focused on women who blog and helping them to turn it into a business, or to just simply do even better than they already are.

Caryn has started The Momma Project which is her drive to reach $1000 to get to the convention. If you have a little to spare, head on over and click on the Chip In button.

If you don’t, perhaps share the link or spread the word… and in time, when/if you ever need it, Caryn, myself and everyone within the Autism community will “pay it forward” in an effort to help out where we can for you as well.

Support is where you give it

On Twitter, I like to end each day by tweeting something a little positive, with the statement “Support is where you give it” as a reminder that we’re all helping each other. You have to be there with a kind word, some friendly advice or even a dollar or two if you can if you want to help keep the circle of supporting each other alive.

Your little bit of support added with everyone else’s little bit of support makes for a very powerful support system that could one day be there for you when you need it.

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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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Do you Love Autism or Hate Autism?

I have talked to quite a few people with Autism (usually more specifically Aspergers) that really love having Autism and the benefits that come with it. Although, I’ve also talked to others who absolutely detest Autism in all shapes and forms. These are usually people that do not have Autism but do have a loved one with very severe Autism, more times than not, it’s their child.

I don’t want to generalize too much, it’s just an observation. However, love and hate are two pretty intense emotions and when focused on a single subject, this can usually lead to animosity or hostility.

The more I got to thinking about it, the more I started to get hostile myself, not at either group of people but at the need to push their love or hate onto each other.

It ultimately resulted in me tweeting this: “Autism is not your sword to wield as a weapon nor for you to fall on. Love it or hate it, don’t tell others how to feel.”

I feel it’s important to share our accomplishments and our disappointments, our pride and our sorrow… but it’s very hard for someone that hates everything to do with Autism to watch someone with Autism themselves go on and on about how much they love it and how wonderful it is. Conversely, it’s very hard for someone who is very proud of their Autism to go on speaking very harshly about how life destroying it is.

I would like to suggest that you either accept their stance as their circumstances are very different from yours or politely ignore/unfollow/unfriend/leave that person and continue on with what you’re doing and let them continue on with what they’re doing.

In a perfect world, we all support each other. But sometimes we just can’t… and that’s ok. But we really don’t need to replace support with fighting. Love it or hate it, we’re all on the same side, I think.

I invite you to share, but not fight…  do you love Autism or do you hate Autism?

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Autism Community: What is Politically Correct? How do I Not Offend Someone?

This goes along the same lines as my last post, where I feel people need to stop being so childish… how do I talk about Autism without offending someone?

I’ll give you some examples… when I talk about Autism being a source of strength, something to not just overcome, but to master and use as a way to make yourself even better, I get attacked by those who have a loved one with Autism that is unable to speak, hurts themselves, will never move out on their own and never really have a life of their own.

On the other hand, if I try to speak up for those people and help people see just how ugly Autism can be, how stressful and depressing it can be on those who have it and those who sacrifice so much to care for those people… when I try to show people just how much of a disability it can truly be on a life long scale… I get attacked by those who have Autism and use it as a sword to attack us “neurotypical” people who don’t really know what we’re talking about.

Now obviously, I’m talking about small percentages of the over all population, most rational people wouldn’t attack me for doing either as I’m only trying to raise awareness and trying to do so for the greater good of all parties involved. However, there are still those out there who feel I’m making an effort to undo everything they’ve worked to accomplish.

Those with Autism that live on their own should feel proud and should hold their head up high… if they’re proud of having Autism (or Aspergers), then I will join them in telling the world.

And if those who cry more than they laugh because their children will never have a friend, never learn to talk, never be able to go out for a nice quiet meal and so on and so on…. I think they should be allowed to speak up too, and make sure the world hears them when they say “we need help, we need to stop this!”

But how do you do one without offending the other?

I’m not entirely sure there is a way, to be honest…. unless everyone can agree to stop being offending in the first place.

You can be proud of how you’ve learned to use Autism as a strength instead of a weakness, and still feel compassion and reach out to help those that see Autism as a life destroying disability in their own house.

And you can completely hate and feel defeated at what Autism has done to your family but still congratulate and be proud of those that have overcome and used their Autism to accomplish great things and have a good life.

We have enough fighting going on over which doctor is right and which one is wrong, we really don’t need to be fighting amongst ourselves.

The one thing all sides of the coin can agree on is that Autism is a spectrum. That doesn’t just mean several shades of good nor does it mean several shades of bad. It means going all the way from super human brilliant all the way to non-verbal self-inflicting violence.

Anyone being offended one way or another is either not as aware as they thought they were, or they’ve allowed their emotions to hide what is truly important… supporting each other.

I’m sorry if I offend anyone, but I’m not going to stop raising awareness for those too tired or depressed to do it themselves… and I’m also not going to stop being very proud of those with Autism that are doing well in life.

I will not stop if you’re offended that I think Autism is wonderful when it is doing such terrible things to a loved one and I will not stop if you’re offended that I think Autism is truly disgusting even though it’s making some people truly exceptional.

I will not stop.

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Something That Upsets Me: When One Autism Parent Tells Another Autism Parent “How It Is”

Now don’t get me wrong here, I’m not talking about people offering support or advice, I mean the ones who outright tell you that you have to put your child on a diet, they tell you that vaccines are what caused your child’s Autism, they tell you that you have to do what they’re doing and they tell you that they are right….  which obviously implies that… you are wrong.

Now, I have my opinions on some things such as the vaccine debate, but I never force that on anyone. I have my opinions on the diet, as the gluten free portion really helps my son but none of the rest of the diets do. We all have opinions! There’s nothing wrong with that.

But please stop trying to tell me or anyone else what you ‘know’ (when what you mean is ‘think’) is true.

First of all, there is no definitive answer to the vaccine debate, no matter how certain you are, the diet does help some, but not all and every single therapy and drug out there that helps one child also does not help another.

Autism is a trial of hit or miss, a life time of “try everything” where you quickly become a researcher, doctor and psychologist all in one despite the fact that all of your degrees are found through hear-say from other parents, the doctors at your family clinic and Google.

Most recently, which is what set this post off, a woman replied to another parent’s question on what to do, with one word: “DIET” and went on about it and included how [she believed] her children were harmed by antibiotics or vaccines, including a little disclaimer: “Pretty sure everyone else’s avenue there is similar (vaccines OR antibiotics).”

This really quite upset me, and I was so tempted to lash out in response but instead, I did reply but simply stated that no.. not everyone is similar.

The fact is, not every parent believes that their child was harmed due to antibiotics nor vaccines. So please, do not speak on my behalf.

While I sat there, tempted to hit the submit button with all my anger and frustrations typed out in a rather emotionally charged response, I thought about why it angered me.

I think that I just come to expect more from people dealing with Autism. It’s true! Think about it, Autism is a spectrum disorder, that means that no two cases are identical. It also means that symptoms, causes and treatments can be and mostly likely are different for most Autistics.

It’s the one thing that all scientists, doctors and hopefully even parents can agree on… my child with Autism is simply not the same as your child with Autism.

So I just sort of expect that other parents would simply speak to each accordingly… that they’d share THEIR experiences and what works with them but never presume to tell anyone it’s what they have to do… that they’d share what THEY think caused it but never presume to tell someone else that it’s their problem too.

It angers me, it really does. I write this blog to share my experiences with my son so that hopefully you see something that inspires you or makes you think “hey, maybe we could try that!” Maybe it’ll help you and your child, maybe not. But I’d never write something saying that you must do what I did or think what I think.

I’m sorry that this isn’t your typical, feel good, type of post from me but I feel I had to let it out, otherwise there would be twitter and/or facebook replies that would start a whole mess of arguments that really didn’t pertain to the situation or help in any way.

So feel free to reply to me here, if you disagree or wish to share. That way we can keep valid questions/support free of needless digression.

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