Tag Archives | community

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 }

When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

Comments { 33 }

My own little world – Important place to be but don’t get lost there

By on September 8, 2011 in Autism

The phrase “own little world” is often used to indicate ignorance, that a person has no idea what is going on in the world outside of their own life.

I like to think of it more as an indicator as to what is important. You see, what ever is happening in my own little world has the utmost importance to me. It’s what I know best, it’s what I care for most and it’s what is most important to me.

There’s nothing wrong with your own little world, everyone has one and everyone should be proud of theirs.

My own little world

our own little worldFor me, my own little world consists of myself, my wife, my children and my pets… that’s it. That’s what I know better than anyone else, it’s what is more important to me than anything else and it’s what brings me the most joy.

For some people, it might be only their children, only their spouse… it may be just themselves, if they are focusing on their own happiness before starting or without having a family.

You protect your own little world even if it means getting a little bloody because there’s nothing more important in the whole world.. than your own little world.

But…

Don’t forget there is a bigger world out there

I find that, especially when it comes to parenting, and 10 fold more when it comes to Autism, people easily get lost in their own little world.. and when they step out and look around, they forget that things are different out there.

I know I’m not telling you anything that you don’t already know, but we all need reminders sometimes. Hear me out for a minute…

We Autism parents write about our experiences and sometimes, when we’re lucky, we write something that you can relate to.  However, the very nature of Autism, as we all know, is that the experience is different for everyone.

This presents a very interesting problem…  we write about our own little world, which doesn’t match up with other people’s little worlds… there are two possible outcomes:

  1. One or both parties recognizes that their own little world is different, accepts that fact and either does not comment or does comment, stating how their own experience differs
  2. One or both parties denies the existence of the other person’s little world, proclaiming that they are liars, misguided, ignorant or just plain wrong and that they are doing a great disservice to the entire world (which I’m assuming is their reference to their own little world but we both know it isn’t)

More often than not, I see #2 all over other people’s blogs. (pun intended)

Take a deep breath

The problem with this is that it requires both parties to remember and recognize the “my own little world” phenomenon and take a deep breath, relax and accept that we all have different experiences with differing opinions.

Not just both parties, but many many parties… the more popular a blog becomes, the more that little worlds come into contact with it… some of them collide.

Just this morning I tweeted: Autism is like a rainbow; it has a brighter side & a darker side, every shade is important & beautiful and it hides something golden.

To which, one angry parent was rather mad that I’d call it a rainbow (I didn’t, it’s a comparison), proceeded to remind me that Autism is a serious disability and that “fluff” like that doesn’t help those who suffer from Autism.

He didn’t take a deep breath.

He completely skipped the “darker side” reference as well as the part that says that it “hides something golden”. I mean, yes… I’ll admit to the “fluff” but it’s not all peaches and cream either. I felt it rather adequately expressed the darker points… the “suffering.”

Anyway, as I said, he didn’t take a deep breath, instead acting instinctively to attack me for not telling his story… for not telling everyone about his own little world.

However, that’s not my place. I can’t tell other people’s stories for them.

And so…. I take a deep breath, and I remember that his own little world is what he knows and is what is more important to him. In his way, he’s protecting that.

My own little world is different. I can accept that.

And when I read about his experiences and his story… I’ll remember to respect that his own little world is vastly different than my own.

Please keep in mind that, what you experience in your own little world, might not be what someone else experiences. Their story is completely different. They share their story, not to fight with you, but to show you just how different things can be… and maybe, sometimes, just how much the same they can be too.

Take a deep breath. Your own little world is not threatened by others sharing their own story. Your own little world is still your own, you still know it better than anyone… and most of all, it doesn’t mean that anyone thinks you are ignorant of what’s going on outside of your own little world. At least, it shouldn’t.

Just take a deep breath. In fact… you should rejoice that no one else’s little world is the same as yours. If it was, it wouldn’t be your own.

Comments { 6 }

When raising Autism Awareness gets out of hand and becomes something else

By on August 25, 2011 in Autism

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

Comments { 6 }

The Jenny McCarthy-Autism paradox

By on August 8, 2011 in Autism vs Vaccines

Jenny McCarthy Autism

Perhaps I titled this article wrong… paradox should be plural.

If you’re an avid Jenny McCarthy fan and have some very strong beliefs in certain things, this may upset you but I still ask that you read with an open mind.

1998

Wakefield releases a study stating ties between the MMR vaccine and Autism… not stating exactly that one causes the other, or that you should stop taking vaccines… but that’s the message that the public receives. The media doesn’t help much nor does Wakefield in subsequent interviews.

1999

Thimerosal is removed from almost all vaccines in the US, except for some flu vaccines.

As a side note… Thimerosal was never in the MMR vaccine.

May 18th 2002

Jenny McCarthy’s son, Evan, is born.

2005

Evan, 2, begins having seizures so severe that he’s repeatedly rushed to hospital emergency. – http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Evan is diagnosed with Autism at the age of 2.

Remember, Evan was 2 in 2005 until May.

2006

Jenny writes about her “crystal child” in Insights of an Indigo Mom: A Mother’s Awakening… in which she writes about chain smoking and cheeseburgers up until his birth at which point she changed to Hepa air filters and eating vegetarian.

I wonder why she never blamed the chain smoking and cheeseburgers… also, one would wonder why she’d write about Cystal/Indigo stories if he was diagnosed with Autism 

2007

Jenny changes her story in May, saying that he’s not really a “crystal child”, he’s actually Autistic. – http://en.wikipedia.org/wiki/Jenny_McCarthy#Activism_and_autism_controversy

She claimed that the MMR vaccine specifically caused his Autism… and began campaigns against Thimerosal despite the fact that it never contained Thimerosal and he was born several years after Thimerosal was removed from most vaccines.

Jenny goes on a book writing spree over the next several years, publishing several books on motherhood as well as “healing Autism”.

2008

Jenny begins her crusade against Autism, becoming a spokesperson for Generation Rescue and TACA and appearing on several radio and television programs, including Oprah. Each appearance includes endorsements for her books.

Jenny also claims that Evan has “recovered”… which isn’t the same as cured. But it doesn’t stop the media from using that word a lot in articles about her and her son.

Jenny and Jim Carrey begin a “march on Washington” to “green our vaccines”. When interviewed, Jenny claims that Evan was “undiagnosed with Autism”.
Jenny also reinforces that she is not anti-vaccine but rather for safer vaccines and spaced out schedule. An excerpt:

Don’t do more than one shot in a visit. Do you see what I’m saying? Not to not vaccinate. Space them out, ask for mercury-free. Make sure your child is not sick before you vaccinate. Your child does not have a good immune system. How is it supposed to detox the vaccine? Test your child for an immune system. Make sure they have really good glutothion. Glutothion is your body’s naturally antioxidant to detox these things.

2010

Doctors and scientists start to question McCarthy and the diagnosis that her son received, claiming that his symptoms more closely resemble Landau-Kleffner syndrome… very similar to Autism but treatable. – source http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Despite the possibility that he never had Autism to begin with, Jenny confirms that she’ll continue to “be the voice” for the disorder. She also begins to realize that it wasn’t really the MMR vaccine after all, stating that she just wants vaccines to be safer, rather than getting rid of them entirely.

2011

Jenny joins the Generation Rescue board in January.

Jenny speaks out in support of Wakefield, claiming “I know children regress after vaccination because it happened to my own son” and asking “Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism?”

One would wonder why there’s any need to check the other vaccines if she’s so certain it’s the MMR.

Jenny continues onward, claiming that “kids do recover from Autism” as her son did, with a gf/cf diet and vitamins. Previous articles went into more details of his treatments including “a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. ”

What can we take from all of this?

Well, first, we have the fact that the blame she has shifts radically from Thimerosal (ethyl-mercury) to the MMR vaccine itself to the vaccine schedule (multiple vaccines at one time) to simply vaccines in general, asking for more research.

Secondly, she seems very conflicted about what exactly her child may actually have. First there’s crystal child/indigo mom theories, then it’s Autism and now there’s questions of Landau-Kleffner syndrome which, from what I can tell in my research, she has never actually explored.

Third, almost everything she gets involved with seems to have a heavy self promotional feel to it. Many praise her for getting into the spotlight for Autism awareness but at the same time, there are many people who believe she does it simply to get herself into the spotlight. Most notably when she recently offered to pose nude once again for Autism awareness reasons.

Finally, and this is a big one… she has become the leader of the anti-vaccine movement despite the fact that she never once said she is anti-vaccine herself…. and in fact, professed many times to wanting more research, safer schedules and “greener” vaccines.

Much like Wakefield, who had his own patent for a vaccine as partial replacement of the MMR vaccine (who would patent a vaccine if he was anti-vaccine?!?), her concerns over vaccine safety lead to hysteria and paranoia among parents who now place their children at much greater risk than they ever were before.

In my opinion

Seriously, as others have said before… stop listening to a Playboy bunny/actress for medical advice. That’s not to say that she’s not allowed to have an opinion. She is… but she’s doing the same research you are. She’s not a doctor nor a researcher.  She’s a mom just like every other mom and her opinion holds the same weight.

Also, stop putting words in her mouth that she didn’t even say. She never said she was anti-vaccine and she never told you to not vaccinate. Don’t tell me she did. Whether you hate me right now for writing all this or not, don’t assume I haven’t researched this. I have. I know she’s “pro-safety” and not “anti-vaccine.”

Lastly, and this is just my opinion… people of high influence, such as celebrities, should be very very careful about what they randomly put out there. These are our children and unless you are absolutely certain (and when it comes to vaccines, no matter what you think you know, you are NOT absolutely certain), you should not be putting fears and doubts and unproven concerns into the minds of people that could put themselves and their children at risk.

The point is, there is a chance that what you *think you know* may be wrong. There is an even bigger chance that the way people interpret what you say may be wrong.

The one clear message through this entire post, that I’d like for you to take from this is, Wakefield and McCarthy are not anti-vaccine!!!

Despite them both saying that they are for safer vaccines, they have not made it abundantly clear that they are not anti-vaccine.

Wakefield needs to stop putting out articles on studies, McCarthy needs to stop putting out articles on recovery and her own story.

What they need to do (if they insist on continuing) is write articles and do interviews that consist of nothing except them telling parents “Vaccinate your children! Do not withhold vaccinations. Vaccines save lives!” They need to explain their stance, clearly and definitively. If they are pro-safety and not anti-vaccine… then why are anti-vaccine activists praising their work?

If they have no intentions of making this clear, then they should no longer be in the media, in my opinion. Because the message they think they are sending is not the message that some parents are receiving.

This is the Jenny McCarthy paradox as I see it. On one hand, I respect her work to raise awareness. On the other hand, I despise the self promotion and her willingness to let parents continue to be anti-vaccine in her name.

Is it any wonder that people’s opinions of her are so conflicting?

Comments { 54 }