Tag Archives | acceptance

The kind of self advocate that I want my child to become

By on February 11, 2013 in Autism
Tyler and Cameron - Brothers

Tyler and Cameron – Brothers

I am writing this because I’ve had quite a few people ask me if I want my son to be an advocate like me or what I would hope he’d say. I thought this would be a good time to address those questions.

If you’ve read anything from me in the past, you likely expect the answer from me to be something along the lines of “a positive role model that is respectful and understanding of everyone.”

And yes, should he truly wish to speak up and raise awareness, understanding and acceptance of autism, that is pretty much the exact type of advocacy that I would love to see from him.

I understand that some advocates take the “fight for our rights” approach and that is very much needed as well. I won’t lie. Yes, some get caught up in the battle and it becomes hateful and negative… but this isn’t about that right now.

There’s more kinds of advocacy too. As much as some might disagree, those that fight for health care changes, particularly those surrounding vaccines, are advocates as well. Those that fight to cure their now adult sons and daughters that are still living at home or in a home, they are advocates.

There are even some self advocates that wish to be cured of their own autism. They are self advocates all the same. Even if they might not be sharing the sentiment of the “majority.”

I’ll love and respect my son and be very proud of his efforts no matter which approach he takes.

However, the honest truth is… and it’s kind of hard for me to admit is… I sort of hope that he doesn’t get into the whole thing at all.

That’s not to say that I’ll be disappointed if he does. It would be pretty awesome if he does because I think he can do a lot to improve things.

But I kind of look at it like how we shelter our kids from the 6 o’clock news. Because they don’t need to know about the wars, the murders and the state of our economy. They are happy. Carefree. The world reaches as far as their furthest friend’s house down the street and the worst thing that could happen is that they drop their ice cream cone in the middle of summer.

A self advocate (or even a parent of a child with special needs for that matter) that lives their own struggles, battles and daily disappointments and achievements will have enough in their lives to keep them both busy and content too, depending on how that day goes. For most people, that’s more than enough.

The advocacy world seems pretty great at first, getting positive feedback and support and reaching more and more people with each day’s effort you put forth. But at some point, it changes. You start reaching haters, who “come after you” where ever you may be sharing your thoughts. You get people who don’t just disagree but disagree via attacks and threats. You get people who expect more from you whether it be more effort or more time.

The best advocates are the ones that can deal with these things either by tackling them head on, rising above them or by simply paying no attention and doing what they do regardless.

But it’s taxing. It can wear you down and make you tired.

And at some point, invariably, you start to wonder…. what’s the point?

Do I hope that, should he become a self advocate, that he’ll have the strength and wisdom to over come these hurdles? Of course! I hope I can be strong enough to help him be ready should that time come or to be there for him at that time. I hope even more that he can be a self advocate and not need to experience those hurdles at all.

But the honest to goodness truth is, I would kind of rather him just not need to get to that point.

I’m one of those parents who, probably blindly and even wrongly, wants to shelter his kids from the evils of the world. To not ever have to hurt. To never know what terrible stuff is really happening out there.

But they will. One day, many days… they’ll be made all too painfully aware.

And avoiding the advocacy world won’t stop that. But it will help him to avoid extra hardships. Some extra hurdles that he need not worry about.

Not much would make me more proud than seeing him pick up a metaphorical sign (or a real one for that matter) and fight for himself and others like him, for what ever reasons and in what ever manner he chooses. I believe that he would inspire many and do great things.

But I’d also be quite happy and every bit still just as proud to see him go about his life, focused on what matters most to him, what ever that may be.

Because in the end, that’s what this is all about. Being accepting of what others do, even if it’s not what we did, or what we want them to do. To let them be their own person, whether it’s some other advocate or someone that refuses to be an advocate.

Because if my own advocacy is to mean anything, if it’s to have any value at all, than it has to start with me.

That means having my own hopes and dreams, even hopes and dreams for those that I love, and having the understanding and respect to accept that not only do they not have to fulfill those hopes and dreams of mine but that I will be every bit as happy and proud of of them for having their own hopes and dreams.

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My advice for parents that have just received their child’s autism diagnosis

By on July 23, 2012 in Autism

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

Comments { 29 }

Autism and empathy – Here’s another way to look at it

By on July 20, 2012 in Autism, General

EmpathyEmpathy:
The ability to understand and share the feelings of another.

There really is a severe lack of empathy where autism is concerned. Allow me to demonstrate.

  • You’re at a grocery store and your child has a complete meltdown and someone says “Can’t you control your child?”
  • You go to a restaurant and your child has trouble sitting still and someone says “Those people really need to discipline their child.”
  • You look really tired and worn out and someone says “Parenting can be tiring. You’ll get it eventually.”
  • You’re explaining the struggles that having an autistic child can bring and someone says “Oh please. All kids do that!”

Do I need to go on? Are you starting to see where the lack of empathy comes into play?

And this is just for the parents. Here’s a new list, from the autistic’s point of view:

  • Just go and play with the other kids. You’ll have fun if you just make yourself do it.
  • It’s not that loud. Just deal with it.
  • You’re doing it my way whether you like it or not.
  • Look me in the eyes when I’m talking to you. Stop being so rude.
  • You have to give me a hug or you don’t get what the others got.

Again, the list could go on and on. But I think you’re starting to get the picture.

I won’t even go into the whole bullying thing. I think it’s safe to say we can all figure out where the lack of empathy comes in when someone is bullied, autistic or not.

Yes, there’s a very distinct lack of empathy but it’s not necessarily coming from the autistics themselves.

Sure, some autistics might not understand the thoughts or feelings of others. But then again, some autistics might just not care. Maybe it’s because they don’t understand but maybe it’s because it just doesn’t matter all that much to what they’re doing at the time. Then again, maybe some autistics care very deeply and are just unable or incapable of expressing it.

That’s a very basic and rudimentary way to look at it. For more details and examples, check out Autism and Empathy.

The bigger problem, as I see it, is the lack of empathy towards autistics, not from autistics.

Instead of wondering if someone is caring about you or your feelings, consider how you can care for theirs.

That’s the great thing about feelings. You don’t need to get them to give them.

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So it’s Victim Mom vs Warrior Mom now? Here is some perspective

By on June 21, 2012 in Autism

 

Jenny Mccarthy Victim

Sending all the wrong messages

Jenny McCarthy, more famous in the autism community for her on again/off again autistic son and her war on vaccines than her actual acting career, has made some very bold statements during the latest Autism One conference where she likened some moms to choosing to be victims and enjoying the “oh woe is me” victim role.

For some light reading on the subject:

Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”
Words Matter
A letter to @JennyMcCarthy

There are a lot more posts and articles out there but I don’t want to list every single blog/article in the autism community because everyone has written about this.

I was going to let this go by as just something silly, nonsensical or, more or less, stupid.

But, upon thinking about it more today, I’ve come to the conclusion that I should say something. Something that I feel is imortant.

Perspective

To recount what it was that she said, I’m going to borrow from the Left Brain/Right Brain post (the first article I listed above):

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

Now, for the most part, the autism community got up in arms over this in one of two ways… either being offended as she had called them victims, or defending her as they felt that she was making a great point.

My stance is, it’s all a matter of perspective. Now, hear me out.

This is just an example, but where’s the dads? How come it’s only moms who get a label? If anyone should be offended, it’s us dads that work every bit as hard as the victims and warriors combined and we’re forgotten about completely.

See? Perspective.

Anyway, more to the point, I’d like to offer a few alternative perspectives.

The two groups

The two groups that she alludes to were contained within one larger group of moms discussing alternative treatments. I can only assume, and this is just me, that if not all, then most of those moms were in the anti-vaccine camp… believing that vaccines, or other toxins, had caused their child’s autism in the first place.

This already excludes a lot of moms in the autism community. The majority I’d say, since most autism moms do not believe the vaccine theory. This means that she’s casting a divide within an already divided group.

So to put it mathematically, in hypothesis only and my numbers will be way off, if the split is 75/25 for moms who don’t believe the vaccine theory and those who do… then she’s dividing up the 25 into two groups. If 50/50 then it would be 13/12 or something like that.

It’s still very wrong to label those moms and cast judgement, I’m just saying that maybe she’s not talking about the moms that you think she’s talking about. You know, the moms that have no qualms with the toxins of the world.

The Accepting Mom

The prevalent perspective is that Ms. McCarthy is talking about moms that have come to accept their child as they are.. with or without autism. That those moms do not seek out chelation or force feed their children bleach and therefore would rather just be the victim.

If this is the perspective of choice, then you must realize that it’s how she sees things. It’s her own perspective.

I realize that this won’t be popular among those who like Jenny McCarthy or feel how she feels but remember, this is only to illustrate a different perspective.

See, she may consider a mom that does not try things like giving their child a bleach enema as just playing the victim but I tend to think of that mom as simply having common sense enough to not try something obviously dangerous, and stupid.

She may consider a mom that accepts their child for who they are as enjoying the victim role so much that they give up rather than try tons of pointless and costly treatments but I tend to think that not seeing their children as damaged goods in the first place, and having unconditional love trumps all titles that one can fling at them.

She may consider a mom that talks about her struggles in raising a child with autism as a person that basks in the feeling of being the helpless victim but I tend to see that mom as someone that I can relate to, get advice from, share experiences with and understand.

She may see a “warrior mom” as a woman that battles “big pharma” and government agencies. That’s fine. To me, when I see a mom crying about how the evil empires broke their child, how much money they spend on treatments that put their children in danger because they are so desperate to cure them… that’s when I see a victim. In fact, I hear it in their chants: “big pharma is making money while making our children sick. We’re the victims!”

She may see a mother that never stops fighting for their child as a warrior mom but I tend to think that ALL MOTHERS NEVER STOP FIGHTING FOR THEIR CHILD. If they do… they’re not really their mother. Moms do not give up. Period.

She may see compassion, positivity, acceptance, understanding and love as being the victim. Then I say, please call me a victim too.

If seeing my child as perfect makes me a victim and seeing my child as broken, in need of being cured from the damage done by evil doctors makes me a warrior… I’ll take the victim title, thank you.

That’s just my perspective. And opinions are born out of perspectives. They do not make them fact.

Her opinions, based on her perspective, should remain her own.

She’s entitled to them.

As I am entitled to mine.

Signed,

Victim and proud.

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Being accepting of autistics that wish for a cure for autism

By on June 4, 2012 in Autism

A recent news story, filled with a lot of science and interesting information, also included the insight from a man with autism, named Jeff Hudale.

You can read the news story here, in fact, I suggest you do: What’s Different About The Brains Of People With Autism?

Now, the science behind the story and the things that they are finding out about the human brain, specifically the differences between the typical and autistic brains, are really quite amazing.

But I would like to focus on the very last part of this piece, where Jeff Hudale states:

“I don’t want to quit until they finally can get this set right and get this thing eradicated,” he says. “I’d like to have some semblance of, just be a regular person like everybody else.”

There’s been a lot of talk about this through out the autism community but despite the attention it’s attracting, I see very very little (none to be honest) support or even acceptance of his feelings.

The general consensus that I see from people is that it’s sad that he feels this way and that he’s simply confused. That somehow it’s the life time of bullying, judging and other messages he receives either intentionally or unintentionally, that has caused this man to think of his autism in such a negative light.

There’s a lot to take in there as you begin to wonder if his parents had pushed for a cure or treated him differently because he was “broken.” Keep in mind, at 40+ years old, his diagnosis came at a much different time than how things are today.

Was he raised to be proud of himself or to always be aware of his differences. Did he read a lot of what the media had to say about autism and reflect those things inward?

Did years of bullying or lack of friends cause him to hate autism for making him the way he is?

Generally, it comes down to outside forces.

Put it this way, when we generalize his reaction into a “who said what to make him feel this way”, we are sort of dismissing him entirely and “putting the blame” on others.

That’s a nice way to look at it, to be honest. It means there is nothing wrong with him, it’s society that got to him and made him think this way.

However, the “nice way to look at it” isn’t always the honest way to look at it.

See, I like this news article because it’s honest and real. He is not the first autistic I’ve heard of, or even talked to, that has expressed a desire to be rid of autism. Or to use the “fighting words” version… to be cured.

I think, and this may just be me, but not everyone needs to “just accept it” and “just be proud of it”… some people don’t and never will. They simply wish that they do not have autism.

While it’s not the approach I take nor is it what I suggest, as it is obviously negative and self defeating, it is a reality.

not okIt’s a reality that should not be hidden or ignored.

Sure we could just say that Mr. Hudale should just be happy with himself despite what anyone else thinks but that’s what we think of his life.

That might not be so easy for him to think, nor is it a requirement. We can’t just demand that of him.

Wouldn’t that be more of the “stop thinking so differently and conform to what the rest of us believe!” mentality anyway?

Besides, this line of thinking ignores the simple fact of what autism really is… a disorder or disability.

There are a great many struggles, heart aches, things you can’t do, negative messages and so much more that you have to live with for your entire life when you have autism.

Some examples for some autistics include never going anywhere loud (concerts, subways, movies, etc), never being able to play sports, never being able to make friends and the list goes on and on. I couldn’t possibly list every possible thing that autism could limit or cause you to never experience at all.

There is just so much negative in life that comes with having a disability (or disorder) that it would be a bit naive to assume that it’s only due to bullies or other people that a person would wish to not have that disability.

Now, I’m not saying that it’s never the case. I think it’s safe to say that some people do hate autism or what ever disability they may have simply because of how it causes others to treat them or how others look at them.

Perhaps some of those people could grow to accept and maybe even love having autism if only people were more accepting of them.

But I think it would be a stretch to think that is true of every single person.

Some people may just wish to no longer have autism because they simply do not want to have autism. No matter their age, no matter what others say or do, no matter what you or I think they should feel… they just don’t want to be autistic anymore.

And we need to be accepting of that too.

Acceptance means we that don’t judge people for how they feel or what they think whether or not we agree or even understand it.

That goes for people who are not proud of having autism. Not just the people that are.

Let’s talk to them. Not ignore or dismiss them.

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