Tag Archives | parents

Why I won’t be writing about fathers and autism this Father’s Day

By on June 12, 2013 in Autism
My boys and I

My boys and I

When I started this blog, there were so few blogs from dads. Fewer still from dads that were writing about autism or having an autistic child. I felt honoured to represent the “silent” partners and even felt that I had a responsibility to say yes every time that someone asked if I’d contribute or guest post for other blogs when they tried to feature dads, especially around Father’s Day. And really, with so few dad autism bloggers, how could I say no? It’s not like they had a big list of others to fall back on.

It only took one year to realize that I was in over my head. Not that I had too much demand to write but that I very quickly ran out of things to write about. I felt that I was doing a disservice to those people that requested me if I just rehashed the same message for each of them even if I did phrase it differently.

It hadn’t occurred to me until after I was asked but, I really have no clue what to write about! Do I fall back on traditional stereotypes and write about bread winning and being strong and never sharing emotions and retreating to the man cave and needing a beer in each hand? Do I turn to the one thing that is most commonly written about with dads and autism… running away? Denial? I’m sure that doesn’t represent us very well and certainly doesn’t fit into my list of one responsibility… to represent a father’s point of view.

I had to fall back on my own blog, since it is called “Autism From a Father’s Point of View” after all and see what I could pull from things I had written before. But that wasn’t much help either. I discovered that even though everything was, indeed, from my point a view, as a father, nothing about any of it was distinctly fatherly. Nothing stood out as… you know, ground breaking insight into how it’s different for fathers.

The next year or two, I wrote when asked, but, I just wrote about what ever was on my mind at the time. I had given up on trying so hard to come up with something so focused on fathers. It really was stressful. Not “I might lose my job if I don’t reach this deadline” stressful but certainly enough that it really bothered me.

Why was I struggling with this?

Now, I’ve been to some homes where the traditional stereotypes aren’t traditional stereotypes at all, they’re facts. The dad is very obviously the bread winner and requires a beer and a football game after a hard days work. Now, I know that you may read that and say “Yeah? What’s wrong with that??” and if you do, I apologize. I don’t mean that it’s wrong in anyway. It’s become a stereotype for a reason. It’s how it was and how it still is for some people.

That being said, I’ve also noticed, in some homes, that things have very clearly changed. The mother is working every bit as hard as the father or possibly the only one working and likewise, the father is caring for the children and house every bit as much or may even be the only one… or at least, the majority of it.

I think this is where I begin to struggle because I see this even more so in families that have a child with autism. Especially if both parents are the accepting types. No duty is his or hers, no role is gender based. The father changes just as many diapers, attends the same dance recitals and even throws the footballs every bit as much as the mother does.

I’ve also found many families where there is now a single parent where there once was two… and it’s not always the mother that is pulling double duty now… sometimes it’s the father. Granted, this may not be as frequent as single mothers because there is truly something incredibly remarkable and strong about how mothers can get the job done without any help.  But some fathers are proving to be just as strong and just as remarkable and while I am not happy that it has to be that way, I am incredibly impressed and proud that they can.

Having realized this, having embraced this and as I hope that this trend continues and grows, I have decided that I will happily write and guest post elsewhere if asked but only on matters of parenting or about autism in general but not about fathers for Father’s Day. I am proud of fathers every day. And I love that there’s a special day for fathers just as there is for mothers because they deserve it… now more than ever.

But I can’t write about something that is uniquely one parent or the other as that distinction, I feel, no longer applies. Unless it’s about actual child birth or breastfeeding, neither of which is in my area of expertise, I can’t think of anything that I can tell you about a father that doesn’t also apply to a mother and vice versa.

That may mean less opportunities for me to get my name out there but so be it. It’s a good problem to have. Moms are dads, dads are moms and parents are parents. This applies even more so as gay marriage becomes legal in more and more places. Two women, two men… all parents. I’ll gladly pass up opportunities to write for others for that.

This Father’s Day, the only thing I have to say as a father is kudos to you fathers out there that give me nothing to write about on fathers. The less I have to write about that distinguishes a mother from a father, in my opinion, the better.

Keep it up.

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When did ‘different’ become wrong? or Acceptance is not a one way street

By on May 28, 2013 in Autism
differences

There’s something about you that’s different

I couldn’t decide on which title I liked better so I just went ahead and used both.

There seems to be a divide growing between certain autistics and certain parents. Not all. Just certain ones. My fear is that divide is growing.

I cringe when I see people talk about how they don’t understand how “the camps” can’t work together. For me, I don’t understand how there can be “camps” at all. Yes, autistics are different from parents and children are different from adults but really, aren’t we all different anyway? Autistics are different from other autistics and parents are different from other parents.

In the camp of differences, we all belong together.

So it hurts me when I see people share their experiences and opinions and get attacked for it. Now, don’t get me wrong. If someone tells me the green grass is orange, I’ll be pretty quick to say “no it isn’t.” But really, do I need to? Is it a requirement of mine to correct them? Or worse, am I bound by some law that says I have to attack them for what a horrible person they are for believing it’s orange?

What if it turns out that the person has a condition, such as color blindness, that truly does make the grass look orange to them? Are they still wrong? Is their perception wrong? Do I proclaim them wrong because their brain interprets things differently than what mine and my friends brains do?

A parent is going to have a different perspective than their own child. That just has to be. I mean that whether the child has autism or not. If a parent shared a child’s perspective and was only interested in appeasing that child’s wants, then the child would have totally chocolate dinner every night, a water park in their bathroom and video games would replace school.

When I hear about a parent that “leashes” their child while out, or fences off their backyard or school yard, I find that it almost always accompanies people that don’t just share their own opinion that a parent shouldn’t do that, they outright attack that person’s intelligence, age, education, parenting skills, rationality, mental stability and oh so much more. People are vicious. They never once consider that person or their child’s past. Does the child have a history of dashing off? Into traffic? Is the child incapable of staying close by for some reason? Is the parent incapable of reaching their child should something happen? Perhaps they have a medical condition of their own such as bad knee or back?
The point is, maybe they just are way too overbearing… or maybe they have a very good reason for keeping their child safe in the way that they know how.

When I hear about an autistic that tries to share their experiences in just how hard life can be sometimes, I find that it almost always accompanies people that hate them for being negative when others are trying so very hard to make autism out to be a positive thing. Or conversely, there are those that hate autistics that share their successes and triumphs only because they’ve been trying so hard to paint autism as a very dark and debilitating thing. They don’t take the time to understand how hard it is to share these things or how hard the journey was to overcome the obstacles they did… they simply attack for not representing their own situation or for “giving people a false impression” simply because it does not reflect their own situation.

Everyone is different. Everyone’s perspectives are different. Everyone’s experiences are different. And for anyone, autistic, parent, child, etc to request/demand acceptance from others, they must be willing to do the same.

Instead of condemning a parent for protecting their child from the evils of a chocolate dinner, accept that they are different from you. Before you condemn an autistic for making the world think that not all autistics are like you or your child, accept that they are just different from you.

I am different. And I am proud. And quite frankly, I don’t care if you accept that about me or not. But know that I understand just how different you are. And I accept that too. You won’t parent how I parent. You won’t “be” as I will “be”. You won’t see the orange that I see.

If someone says something that I disagree with, that doesn’t make them wrong. It makes them different. And even if I do feel they’re wrong, it’s not my job nor my duty to attack them for it.

Different is not wrong. Acceptance is not a one way street.

Let’s accept the differences in those that we demand acceptance from for our differences.

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Until it happens to you – Honoring Mikaela Lynch

By on May 20, 2013 in Autism

Do you remember when you first heard about autism? I don’t. I’m fairly certain it was long before I ever became a parent, but I don’t remember exactly. I find the same to be true of most parents that I talk to. We just don’t bother learning about it because it doesn’t pertain to us, therefore, it doesn’t interest us. Until we have a child with autism. Then we have no choice. But what if we had learned about it before the fact? I think, and it may be just me, that it would have helped me immensely to know more about autism before I had to.

Now, as recent events teach us, elopement, or wandering, is far too real and it happens far too frequently. Both Mikaela Lynch and Owen Black were found within one week of each, on opposites sides of the US, in water… dead. All it took was a split second, their parents lost sight of them for just a split second, and they were gone. Have you ever looked away from your child for more than second? I know have. A lot. In fact, I’d wager that it’s pretty much impossible to have your child in your line of sight at all times for years, much less decades.

But these aren’t the first children to wander off. They aren’t the first to be found in the most tragic way possible. And unfortunately, they very likely won’t be the last. And the reason, I fear, is that many people will read these stories with a heavy heart, feeling much sorrow and then moving on and not learning more. Because it doesn’t pertain to them. It doesn’t interest them.

This isn’t something that you can put off or dismiss because it doesn’t interest you. This isn’t something that you should wait to learn more about until it happens to you. If the deaths of these innocent little children is to mean anything, I would hope that it serves as a lesson to the rest of us to not wait… to not let it happen to us and then wish we had learned more earlier.

autism elopmentThe National Autism Association has taken action to help people be proactive in learning more and being prepared now, not later. Their Big Red Safety Box is a great start in preventing these tragedies from hitting much closer to home than you’d like. I strongly advise that you either take them up on this offer or at the very least, read about it, learn about it and prepare in your own way.

I don’t know the families of the children and I don’t know exactly what happened on those days. I do know, however, that this could have happened to anyone. No one is to blame. No one is at fault. What those people need is support, a shoulder, a hug. No media circus, no questions about how they could have let it happen, no accusations, no guilt.

If it had happened to me, I’d be devastated. I’d be furious. I’d be at my lowest. But it could have happened to me. It could have! And I have no idea how to prevent it. Because until now, I’ve read the news stories and in time, forgotten them. Because until now, I kept thinking that it was just something that happened to other people.

I sit here, wondering if those families were like me. Dismissing the stories, forgetting the lessons… until it happened to them. Did they know about autism before their child’s diagnosis? Did they know about how often children with autism wander away from safety and into danger? Did they know how often children with autism are found later, dead, in water?

I bet they know now. All too well. Not just about their own child but about the facts, the figures, the statistics.

I’m not Mikaela Lynch’s dad, but I would like to think that if I was, I’d want other dads to learn to not put off learning, to not dismiss the lessons being taught this day and most importantly, to not forget.

I put off learning about autism until I had no choice. I’d hate to think how I would feel if I put off learning about autistic elopement until it’s too late. I’d hate to think that I had learned the risks and learned the steps to avoid it and had the chance to take it… but forgot and failed to prevent it.

I certainly can’t speak for the families of these children nor any families that have gone through this previously but I would like to think, if there was anything those people could hope to come from these great tragedies is that the rest of us learn to not wait until it happens to us before we decide to do something about it.

More:

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Don’t fear autism and certainly do not fear your own child

By on March 26, 2013 in Autism

autism fearAutism awareness, I think, comes at a price: Fear.

Don’t get me wrong, there is a very real need for awareness. New parents that know what signs to look for can get a diagnosis for their child early enough to begin therapies in the very earliest stages of life which, as we all know, is the best shot that the child will have at growing up to be fully independent.

However, awareness also makes new parents afraid. It gives them reason to question whether or not ever even have a child. It brings them great sadness and despair as they look towards the future with more uncertainty than ever before… and all because of autism. Many parents are even afraid to vaccinate their child, risking exposure to debilitating or even terminal illnesses rather than risk the possibility of autism.

I just recently received an email from a new mom, her 2 year old being recently diagnosed with autism and another baby on the way, is scared to death as doctors throw %’s and other facts at her about what the likelihood is that her second child will also be autistic. She hasn’t even had time to get over the grief, the guilt, the feeling of being so alone… and she’s thrust into the uncertainty of what may or may not happen with her new baby.

Having a child, it’s the most magical thing there is! It’s that happiest moment of a person’s life. It’s the biggest cause for celebration and elation. It’s something to be excited about, enjoyed and savored.

Instead, this mom and many like her are afraid. They fear the %’s. They fear the risks. They fear the uncertainty. And worst of all… they fear who their new baby may be. They fear their own, unborn child.

I can’t even begin to tell you just how wrong I feel that is. I can’t even begin to put into words just how much it hurts to think of parents feeling this way when it should be the best moment of their lives.

It’s because of autism awareness. That great deed we’re all doing by making people aware.

Sure, it’s mostly the media to blame, in making autism the most feared “epidemic” since polio. Even the charities, the ones that are supposed to be helping people, aren’t helping much by supporting studies that try to find some cause and furthermore, some way to prevent it. Those dollars could be better spent in educating new parents and in reassuring them that help will be there for them when and if it turns out that their child does have autism.

How many children were never born because their would-be parents were afraid? How many laughs were never laughed? How many first steps were never taken? How many lives that should have been… weren’t? And because of what… fear?

It’s our duty to not just make people aware but to support them in advance. To let them know that whether their child has autism or not, whether it feels like it or not, they are most definitely not alone.

Don’t just “light it up blue” and think you’ve done your part. Don’t just write a blog post spouting facts and figures. Don’t just share a tweet or a Facebook status and call it a day.

This April, for autism awareness month and Autism Awareness Day, don’t just be content with the same old stuff that everyone else is doing.

Instead, picture a friend or a family member or even just some random person out in the world somewhere that is considering having their first child and then think about what you would tell that person to reassure and comfort them, not scare them.

I’m not talking about only sharing ‘feel good’, uplifting stories or trying to paint everything with a rainbow glitter brush but rather to not just paint everything black. There are risks and there are facts and figures. But that doesn’t have to be all a person hears. It doesn’t have to be all gloom and doom.

Think about what you would do if it was “Autism Acceptance Month” instead. You would still share the numbers but your over all message might be a bit less scary than if awareness was your only goal.

The reality is, a child is a child, beautiful and innocent, with or without autism. And that’s cause for a lot of happiness. With or without risks, embrace that new life and rejoice in all of the happiness it will bring.

And if your child is autistic, I can tell you that, yes, it will be hard at first. But you won’t love your child any less. In time, your child will show you a whole new perspective on the world that you never dreamed possible. And one day you’ll look back and understand why you were afraid but tell yourself at the same time that you made the right, and best, decision of your life. Because your child really will be that important to you.

Please don’t fear autism and certainly don’t fear your own child. 

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Autism Numbers – Just how many people are being diagnosed with autism anyway?

By on March 20, 2013 in Autism

surveyA recent survey just came out (March 19, 2013), although the news is calling it a “study” which gives it more importance. That survey is abuzz around the world as people are now telling each other that the autism prevalence numbers are at 1 in 50 school children.

Very quickly, people took to social media in shock and dismay at these new alarming numbers. Some were even more scared than before of their environment, some were mad that the numbers were so high and yet being ignored and others shouted out “I am not a number!”

Still though, it’s just a survey. A phone survey.

A margin of error

In this survey, they phoned some 95,000 parents and of those, only 25% actually participated. And even then, chances are that only those with children that were diagnosed were inclined to take the survey seriously. Oh and let’s not forget, not all parents have photographic memories or even know as much about autism as they may claim to, so there’s that.

The big thing to take away here is, it’s just a phone call to some parents. They didn’t ask for nor look at any medical records or talk to any doctors or officials. They didn’t compare what a parent said to actual facts or reports. It was all based on the honesty system.

Now, that’s not to say that the numbers aren’t still alarming or even worth taking note of but for the media to make a big deal out of it… not so much. The truth is, the CDC probably should never have released such an unscientific piece of info as this in the first place.

This places into question the other studies, such as the one that found that 1 in 88 children are on the autism spectrum.

This one was done using medical records and in talking to professionals. But still, how accurate is it? Certainly more accurate than a phone survey but still, it still has a rather large margin for error itself.

Consider this, many people (children and adults alike) still go undiagnosed or even misdiagnosed. I’ve had two people, just this month, message me asking about getting assessments. One person, an adult, said that they are trying to charge her $1400 to do it. She can’t afford that and will likely go undiagnosed.

Another person, a parent of a child, said something similar. Because of where she is, they want “thousands” to do an assessment on her child. Again, that’s just not feasible.

Where I live, very remote, it’s actually quite difficult to get an assessment and even harder to get services simply because of geography. There are no major centers nearby.

Then you have the, all too familiar, doctors that seemingly either diagnose every child they get with autism to help them get access to services or never diagnose any children because they don’t want to contribute to the mass hysteria and hype.

There’s also the issue of getting the referrals for the assessment in the first place. I vividly recall telling my family doctor not once but twice that I wanted an assessment for my son and both times he insisted that my son did not have autism. After I returned with the official diagnosis, I gave him a book on what autism is. He is a good man, he read it.

But these cases are quite common. And should be considered.

Yes, it’s far easier to get a diagnosis now than it was 20 years ago and yes, some doctors are all too happy to hand out diagnoses like they’re Aspirins but the fact remains that as much as it is easier, it’s still not easy.

Many people still face a multitude of hurdles and even if those are met, there’s no guarantee that the diagnosis is a correct one.

And so the CDC sends out a team to pour through the paperwork of this whole mess and make some sense of the numbers.

The result, as I said, is far more accurate than a survey with random parents but it still has it’s own margin of error.

On the plus side

So what good can come of wrong or even inflated (maybe even under-estimated) numbers?

Well, services for one.

Many times these alarming numbers can spur a person into action, giving them the drive and motivation needed to start a new program and provide a new service that was lacking before. They see this large number of children that need help and they decide that something has to be done.

Sometimes, rarely but sometimes, these numbers can even push autism up as a priority during government meetings and help in funneling a little extra funding towards the autism community.

One thing it most definitely does is raise autism awareness. Even if it’s very negative, in the form of fear, it still prompts new parents to find out more. And that can lead to an earlier diagnosis for their child and as we all know, early intervention is key.

A grain of salt

So keep in mind that when you read these news stories or “studies” that there is always a margin of error. There is always a certain portion of it that is inaccurate and that there is always a positive and negative side to these things being out there.

Shutting them down may prevent some services or information from ever being out there but promoting these things may also perpetuate unnecessary fear and maybe even harm, if it pushes more people to stop vaccinating or even from having children at all.

Think of it this way… it’s just a bunch of egg heads fiddling with numbers and proving… nothing.

And the media is doing its best to turn it into a news story that will get you tuning in.

When you see it for what it is, it doesn’t seem so bad.

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