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Autism Advocacy – Some ideas to get you started

By on July 27, 2011 in Autism

autism ribbonI have been rather fortunate to be able to write for not only my blog, but also some pieces for several other blogs as well. It turns out that writing is something that I rather enjoy and I can even be proud to say that I do quite well.

It occurred to me though, that not everyone is a great writer… or comfortable with public speaking… but that doesn’t mean that they can’t be a great advocate. Some people find some great ways to advocate while others still struggle to find what works for them.

So I thought I’d put together some thoughts and ideas in ways that you could help be the advocate you really want to be even if you have no formal training or previous expertise.

Every day life

Probably the most recognized and frequently used method for advocacy is simply to live life with Autism or with a child that has Autism. You’ll find yourself explaining it to friends and family, you’ll find yourself correcting others or volunteering information when people ask… sometimes you might even have to explain yourself or your child in a public setting if something embarrassing happens.

When you live it, you advocate it simply by walking out your front door.

Don’t be afraid to answer questions, don’t be afraid to offer information. You don’t have to have all the answers, just your own experiences. Explain how it’s not the same for everyone but you can offer your own knowledge on the topic.

People are very receptive, people are often very willing to learn. You don’t have to advertise it but don’t hide it either. When someone shows an interest, speak up.

Wearing Autism Merchandise

Wearing something on yourself is not only a subtle reminder to people but can be a conversation starter. There are a lot of choices, some people even opt to get a tattoo!

What ever it is you do, don’t go overboard. The last thing you want to do is annoy people with it. So keep it smart, keep it clever and even classy if you can. Funny is good too but can be offensive to some if you’re not careful.

Ultimately, so long as you’re not annoying anyone… do what ever looks good on you.

Volunteer

Most charities and events are non-profits… meaning that they don’t do what they do to make money, they do it to fund research or support families.

That means that they could really use the help, since they have no extra money to pay people. And usually it only involves and afternoon or just a few hours but your help would be invaluable.

In these instances, I like to think of it as the worker bee scenario.

Events, such as concerts, walks, bbq’s, etc take a lot of people to pull off properly. Whether it’s flipping burgers, getting people’s names… what ever.

Each and every little job is not only important, it’s necessary… and if they can’t fill those spots, the entire event could be in jeopardy.

Your help, whether big or small, for hours or days, is a big part of it’s success. If you can’t afford to donate, if you can’t be a public figure… just pitch in and help out. It’s needed more than you know.

Local Support Groups

Every community, big or small, has at least one local support group. Those groups usually consist of people with valuable information that you can learn from but there’s often people there that have no information, that need information… that feel quite lost and alone.

Someone at that meeting will likely step up and help those people out… that someone could be you.

You don’t have to pay their mortgage, just help them to realize that they’re not alone. Give them some friendly advice, a shoulder to lean on…. take an hour or two to be a part of a team.

You could learn, teach and grow, all the while making friends and maybe even new friends for your children.

Donate

So maybe you don’t have a lot of time but you are able to muster $10 or $20 here and there… donate it. Keep the receipts for your taxes.

Charities do some amazing work but they don’t do it all on their own. They need donations from people like you and me to fund the work they do.

Also, no matter how hard you have it, there is always someone or an entire family out there that has it worse. Those people struggle far more than you or I could even imagine and they need support far beyond what you or I could give them as individuals.

That’s where charities come in. They pool those donations and build valuable support for those families using the donations from us all.

You don’t have to donate hundreds, every little bit helps.

Take part in the events

I mentioned volunteering to help events run smoothly but it’s also just as much of a help to actually take part in the event… like a walk or fundraiser.

The AutismSpeaks Walk for Autism events have proven very successful in raising donations as well as general awareness all over the world. And all you have to do is walk.

Several other charities and even just local businesses and people right in your own city hold events all the time. Find them, get involved. You don’t have to work if you don’t want to. Just be there.

In fact, you don’t really even have to be there. Help get the word out about them. Tell friends, post to your social networks…. if you get 2 other people to take part in it, you’ve doubled what you could have done just by being there yourself.

If you do get 2 friends to do it and do it yourself too… well, you can see how something relatively small can grow to something very big and very worthwhile very quickly.

Make up something, do what you do best

As @OperationJack says: “Whatever you do best. For me, unfortunately, that requires running waaaay too much.” He’s a marathon runner. When his son was diagnosed with Autism, he decided to run to raise awareness as well as donations. He ran over 61 marathons in 2010!

Another Twitter member, @invisaWriter suggested: “if you know how to plan a killer party you could do fundraiser dinners, or maybe you can organize boxtops for edu. collections”…  not a bad idea!

Use your strengths… even if what you do has never been used for advocacy or fund raising before, try to put some thought into it. You can make it happen!

We’re all equals

I often marvel at how public speakers can travel the country, helping people all over…. or at book writers who can produce amazing pieces of literature that informs and even inspires.

The truth is though, when it comes to being an advocate, we’re all equals.

From talking to a neighbor about Autism to telling the country on national television, we’re equals. We do the same thing… we inform. We have the same purpose, to inform.

The only number that is important to an advocate is 1. If you can inform 1 person, if you can open the eyes of just 1 person, if you can make just 1 person recognize the difference…. if you can inspire just 1 person to want to make a difference…. you’ve done your job.

Whether you write, speak, walk, donate, volunteer… what ever it is you do, your goal is to reach out to 1 person and have them understand.

If you can do that, do it again and again and again… always aim for 1. Before you know it, you’ll have reached hundreds, maybe even thousands.

Ideas from you

I asked this on several networks, here are some of the responses I received.

Sometimes the most effective thing you can do is just be 'out there':
live your life openly, don't try to hide it or be ashamed of it.
It is what it is. You can also give moral/financial support to
others who can go out and speak, write books, etc.




Answering people's questions as they are asked. Wearing Autism Awareness
stuff, my brother got a tattoo to help raise awareness and has become a
conversation starter...








I've been helping make a local Asperger Support Group for Adults and
Children become a 501(c)(3) organization. A lot of work, but it's so
rewarding when we see the families we help!!








I agree, to speak up when people ask questions, to tell people about your
journey. I have been amazed and overwhelmed how people want to listen, get
involved and even donate money to try to help my son be able to speak! I
used to lock myself away and at one stage became very isolated and
defensive. I turned my life around when I took positive action to raise
awareness of autism and what I'd been going through, people all of a sudden
became understanding, supportive and encouraging! Search for Time to Talk
Liam on Facebook to see what ive been doing. People don't understand,
unless you tell them, it's just not possible for them to understand
without you telling them. I'll keep speaking out for my son, until the day
he is able to speak himself! And even after that too probably!!!








I'm an autism advocate in that I ensure that my daughter gets treated like
everybody else, no matter what I have to do. :)








If there is no local clearinghouse for info on ASD and how to handle,
start one.




Please feel free to share your ideas as well!


	

	

		
   
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Vaccine Math
By  on July 26, 2011  in Autism vs Vaccines   

	

	    
vaccine mathAs you may or may not know, I try to avoid this topic but sometimes, for the health of those that are unable to protect themselves, I feel the need to speak up.


Recently I read a news article about how the “Vaccine Mistrust Spreads To The Developing World“, where obviously a news story from a place like Afghanistan can be completely accurate or a total farce. I have no way of verifying any of it.


However, it is very concerning and down right scary to think that people would be choosing to brave Polio than take the (unfounded) risk of Autism, or any of the other associated risks of being vaccinated.


(I included a link to the Polio wikipedia page because I think it’s important to take a minute to recognize just how devastating Polio can really be)


Vaccine Math


Now, this isn’t exactly math so much as a comparison but just follow me on this for a moment:


Your options:


    

  1. You know that vaccines prevent X, Y and Z… and despite the fear that it may cause Autism, you get your child vaccinated.
    2. 

  2. You deny vaccinations for your child and now risk contracting X, Y and Z… and despite the fear that it may cause Autism, your child could STILL be Autistic.
    3. 



Summarized:


    

  1. Your child may become Autistic.
    2. 

  2. You now risk contracting X, Y, Z and becoming Autistic PLUS you also put babies, children and others at risk of X, Y, Z that are not yet or unable to be vaccinated.
    3. 



Outcomes:


    

  1. A child that may become impaired/disabled, with a possibility for life long dependence on a guardian/care provider.
    2. 

  2. A child that may face illness, life long health issues, neurological impairment/disability, disfigurement, paralysis, death… PLUS, you also put babies, children and others at risk that are not yet or unable to be vaccinated.
    3. 



The Logic


To me, the logic is pretty straight forward.


I’m not saying that I don’t recognize the rather questionable ingredients that are used… I’m not saying that vaccines couldn’t be safer.


However, to not vaccinate for fear of Autism really makes no sense to me at all. Mostly because even non-vaccinated children can be Autistic. But also because of the HUGE RISK in doing so.


And it’s not just your risk. You put others at risk as well. A baby may not be able to survive a battle with vaccine preventable illnesses… people with weakened immune systems may not be able to survive them either. They are either not yet vaccinated or unable to be vaccinated. They depend on you and I.


Safe Vaccine Advocacy


Being pro vaccine safety is entirely different than being anti-vaccine.


If you push for safer vaccines, I’ll support you. Even vaccine makers can admit that they could be safer.


Safer schedules? I’m no scientist. I can find articles arguing back and forth, from doctors no less, so I’m not in a position to say but I don’t question it so long as the vaccines are still given.


I’ve written about this before, I’ve also taken a stance earlier this year and this post is an extension of that stance.


Not saying something might mean another innocent baby being infected with whooping cough, or further measles outbreaks.


Don’t react emotionally, don’t base life and death decisions on a Youtube video. 


Do the math for yourself and ask yourself, what risks are you really avoiding and more importantly, what risks are you really taking?


	

	

		
   
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The best part about the Autism community is…
By  on June 28, 2011  in Autism   

	

	    
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?
By  on June 15, 2011  in Autism   

	

	    
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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I got my first “I hate you” from my son
By  on April 8, 2011  in Autism   

	

	    
My son had quite the meltdown yesterday when it came time to turn off his game. It was a combination of losing, his cousin not doing what he wanted and being told it’s time to turn it off. It was just too much… when he broke the game remote and started calling everyone the worst words he could (stupid and dumb are about the harshest words he knows) is when I had enough and gave him a time out in his room.


Don’t make any mistake, this was quite the meltdown and I didn’t get mad… I just removed him from the living room to give him time to cool off. That’s when he yelled back that he hates me.


Now, I tweeted about it shortly afterwards… not that it hurt me, but that I it happened. In my mind, it was as if I had finally joined the club… because most parents have heard this from their children… Autism or not.


Children in general have no filter on the things they say. They don’t know what “pushing it too far” is… they just know they’re mad and they need to express it in the loudest, most hurtful way they can. It’s only in time that they learn (hopefully) how to dial it back, how not to say things that they don’t really mean just because they’re filled with so much emotion.


We as parents can’t take it personally… we all know that it’s simply a reaction and that once they do cool down, all will be back to normal.


However, it can be a bit more extreme when Autism is involved. The yells are louder, the rage is more intense, more things are likely to get broken and in some cases, someone can easily get hurt.


After I tweeted, a lot of parents tried to console me… telling me it’s ok, he still loves me… which I shrugged off. I tweeted it with pride, not pain. I wasn’t proud exactly, wrong word, but as I said, I felt like a part of the club now.


Anyway, upon reflecting on it, I get why they consoled me. As fellow parents of Autistic children, they know just how hard it can be… more so than other parents.


angry boyWhen a toy shatters against the wall or… in this case, a game remote breaks as it’s slammed onto the ground, you can start to feel a little bad as a parent. You start to picture movies where troubled families have troubled kids who break things, become bullies and eventually put on a mask and go around killing people. Yes, I watched the Halloween remakes recently. Anyway, I digress…


More extreme or not, harder or not, our children still love us and I still feel like I’ve just graduated into the next level of the group. I don’t need consoling but I do appreciate the support… so very much so. Because that’s what our community is all about and it’s truly wonderful to know it’s there.


When your child first tells you something hurtful, and they will, you don’t have to share it with pride and you certainly don’t have to share it because you feel hurt.. but share it anyway. It’s a very heart warming feeling when you get that little reminder that there are some truly great people out there that waiting for you in that new group you just joined.


	

	

		
   
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