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The life of an autism parent advocate

By on August 21, 2011 in Autism

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

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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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How many beautiful lives will go unlived due to Autism studies?

By on August 17, 2011 in Autism

The latest Autism Study of the Month is about the likelihood of a younger sibling having Autism when there is already a child in the family with Autism.

I had already discussed how important it is to make family decisions with your heart, not your fears… and how there is always some risk no matter what, even for your first child.

But seeing Google News explode with story after story about it… approx 700 at the time of this writing… I have a new concern.

No FearSpreading Information or Paranoia

At 700 articles, I have to wonder just what message it is that is being sent.

Most studies are negative in nature, focusing on what may be increasing the risks of Autism, but in this case, it’s outright telling people that their next born child will likely be Autistic.

With headlines such as “Parents with one autistic child more likely to have another”, is it really any wonder what the message is?

These studies are important because it brings experts a little step closer to finding real answers but in the general public and in the media, it’s a tool for fear and paranoia.

How many parents will these 700 articles reach?
How many of those parents will make a conscious decision to not have another child based on this study?
How many parents will have their family forever impacted by fear?

The Result of Fear

So you’ve decided to cut your family short for fear of having a child with Autism… let’s discuss:

  • The study found an 18.7% chance of having a child with Autism when you already have a child with Autism. That means that you have an 81.3% chance of having a child without Autism.
  • Is the child you already have beautiful? Amazing? Wonderful? Your next child will be as well.
  • If you only have one child, will you be improving that child’s life or robbing them of a loved one that they can love, cherish, grow with, protect and depend on?
  • Would your child have had the potential to be brilliant? A leader? Inspirational? An artist? A parent?

Lost Potential

I’m not trying to tell you that you have to have another child. If you were already debating/discussing it prior to this or other studies, that’s perfectly understandable. My wife and I did the same thing.

But basing these decisions on the fears created by studies in the news saddens me.

I can’t help but think of the lives that will never be lived, due to fear. The people that could have been presidents, doctors, teachers, parents or even, if they did turn out to have Autism, would have been beautiful people regardless of the titles they could or could not obtain.

My child with Autism is wonderful, he’s amazing! Why would I choose to not have another child when I have such a beautiful life growing before my eyes?

Children, all children, with or without Autism, have limitless potential. Even those that are non-verbal can sometimes surprise you. You just never know what can happen.

Let’s Talk Odds

Since we’re discussing odds, let’s look at some other odds for you and your children:

  • Odds of being the victim of serious crime in your lifetime: 20 to 1
  • Odds of having your identity stolen: 200 to 1
  • Odds of dating a millionaire: 215 to 1
  • Odds of finding out your child is a genius: 250 to 1
  • Odds of being considered possessed by Satan: 7,000 to 1
  • Odds of becoming a pro athlete: 22,000 to 1
  • Odds of winning an Academy Award: 11,500 to 1
  • Odds of becoming president: 10,000,000 to 1

These are some great reasons to be living in fear, to be living a goal, to be optimistic, to be pessimistic and simply… to be alive.

You can’t beat the odds every time, you won’t be a victim of the odds every time either.

The point is to live your life, to enjoy your life and to do with your life what you can while you can.

Don’t snuff out the potential of your children before they ever even have the opportunity to be conceived.

If you want another child, if you want to fill your family, if you want our child to have a younger sibling… do it.

Do not replace potential with fear.

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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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When Autistics Write About Autism

By on August 14, 2011 in Autism

There’s a very unfortunate bit of irony happening within the Autism community that is far more disappointing than ironic… we encourage Autistics to speak up and to not be afraid to say what is on their mind but then when they do, we attack them for not saying what we want to hear.

This has happened quite a few times over the years but even more so in the last week as autism.about.com had a series where adults with Autism were asked to submit a piece about themselves and what they stand for.

Repeatedly, these people would put themselves out there only to be met with some scathing comments from people. Several people have written about this as it really does have a big impact on the Autism community… and here’s why:

Autism Introverts

Autism itself is defined as a social and communication impairment which means that speaking out about something probably doesn’t come very easily. We encourage our children as well as all people with Autism to speak up.. especially about Autism.

Only an Autistic can describe what it’s like, how it affects them. We parents can give secondary accounts, how it affects us and how we perceive it affects our children but when it comes to first hand accounts, we need Autistics to break through their shell.

More so than that, we just want people to be who they are. Autistic or not, don’t be afraid to say what you have to say. Being who you are is one thing that only you can do. But many Autistics are either afraid, uncomfortable or just simply not interested in putting themselves out there.

As a result, Autistics make the best Autism Advocates but because of the nature of Autism itself, it also makes them the worst advocates.

arguingDisagreeing is hard to do

In society, not just the Autism community, it’s not uncommon to see people attack others that they disagree with.

On the internet, people don’t have to look you in the eye to say something hurtful. That makes it a lot easier. You don’t have to deal with their unease, their obvious fear, their expressions… you can just say the most hurtful thing you can think of and leave.

This happens far too often and it’s not just limited to hot topics like religion or politics. It happens far too often in the Autism community as well and not just between parents.

I’ve seen Autistics write about themselves, how proud they are of themselves. Often they write about how they advocate on the higher functioning end of the spectrum only to be attacked by parents that have children on the lower functioning end of the spectrum because they didn’t say what they wanted to hear. The parent disagrees so adamantly that they attack the Autistic person because what they say doesn’t mesh with the parent’s experiences.

It happens with many other topics as well… sometimes they get attacked for the most simple things too, seemingly random things. They can just be positive and be attacked for it, or negative and attacked for it. There’s no rhyme or reason. Nothing is safe.

On the surface, it appears that simply stating “I disagree with what you’re saying because” has become impossible to do, instead becoming a verbal attack of some kind on their intelligence, their logic or some other personal aspect of their being.

No Free Pass for Autistics

All of this is not to say that Autistics can just say or do anything they want without judgement. Autistics still have to abide by the same code of ethics, etiquette and behaviors as the rest of us. Autistics can’t just make their own attacks on people or be rude and not expect some backlash.

If we are to be fair and wish for equality in acceptance, then those that behave poorly should expect some anger in response.

Not all situations are uncalled for… in some cases, an Autistic will be rude or do things that are simply unacceptable and the response from the people is not entirely unexpected. Perhaps some would call it over board but certainly not unexpected.

I Am So Disappointed

In most cases, I am simply disappointed. I’m not sure I can put it any other way than disappointed.

Many times people say things I disagree with and most often times, I don’t say anything. If it’s blatantly wrong however, I may speak up but I’m always careful to be respectful. I don’t know those people, I don’t know what drew them to their conclusions.

I respectfully disagree and state what I think and why. It’s always been my experience that this is the proper way of civil discourse.

What I see most of the time, however, is people calling each other idiots (or other derogatory names) and question their intelligence, or upbringing or something along those lines. Usually they state what they think and don’t even provide a reason for it… they just make their attack, their stance and that’s it. Giving people no recourse but to attack back since there’s very little to either understand or make a case against in rebuttle.

It is so very hard to take something you’re passionate about and disagree with someone respectfully. It’s even more difficult to be civil with someone that so strongly contradicts your beliefs.

But it’s not impossible.

Acceptance… We’re Not Ready

I really want for society to be more understanding… I really want for people to be more accepting of the differences in people, especially when Autism is involved.

But I think it is very clear that we’re just not ready…. as a society, we’re simply not there yet.

Until we can put aside our own hatred, our own anger, we can’t expect those that don’t understand Autism to do it.

We encourage Autistics to come out of their shell, to speak up despite their anxiety and fear and then, when they say something we disagree with, we immediately lash out and bully them back into their shell.

We do this to our own community, we do this to our own children… and yet we expect others to be more respectful?

There is something fundamentally wrong and I am so very disappointed by it.

The Autistic Me has a great post about all of this, some others have discussed it on Facebook and Twitter and in response, Lisa from Autism.About.com has since taken down the 2 most recent posts that were written by adults with Autism.

If it was your child

My advice is, when you see a post by a person with Autism, imagine that person is your child. Imagine you’ve encouraged you child for many many years to speak up and to be brave… to not worry about what people say and just share who they are with the world because who they are is beautiful.

If you and everyone could do this, the responses would be vastly different. Even if you disagree, you’d respond with respect.

Disagreements do not need to be charged with anger or hatred. Disagreements can be made without assumptions of the person. Disagreements can be made without attacking the person.

If that was your child that spoke up proudly, you might still disagree but you’d disagree in a very different manner.

If you are an Autism Advocate, then perhaps you should consider that all people with Autism are your children. For we speak for all, not just our own children. And we encourage all, not just our own children.

Don’t be so quick to hate. Don’t be so quick to assume a person’s history or intelligence level just because you disagree with them.

Speaking out is hard. Be proud… even if you disagree. Be respectful, even if you disagree.

If you won’t… how can you expect others will?

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