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A Road Map for Autism

By on September 13, 2012 in Autism, Parenting

From the first moment a child is diagnosed with autism, parents find themselves catapulted into a chaotic world of therapies, alternative treatments, and doctor appointments. We are left to fend for ourselves as snake oil salesmen try to take advantage, book authors offer conflicting points of view, and everyone from the family physician to Great Aunt Hilda offer their opinions on our children and our parenting. Sometimes these opinions are informed, and many times they are not. We often exhaust ourselves running through what feels like a rat maze, in search of answers or at least some advice that actually helps. We develop our own opinions, fend off curious strangers in the grocery store, and probably find ourselves engaged, on several occasions, in World War III via internet message boards.

 

All of this happens because we don’t have definitive proof of anything. What causes autism? What is the best method of treatment? Which therapies work, and which ones are a waste of time and money? What path do we take when there are so many options, none of which have a clear end point? All of these questions remain a mystery. As scientists work to unravel the causes and possible treatments for autism, we parents are scrambling to find our own answers. There is this sense of fear pervading every choice we make: Am I doing enough? Is this the right choice? Is this even working? What if I don’t do it, and I find out later this is the best treatment? What if I miss a crucial window of development?

 

This may be the most difficult part of raising our children. The fact that we don’t have a clear course of action laid out for us means we are often confused, overwhelmed, and fearful of doing the wrong thing or not enough of the right thing.

 

On the other hand, it can be a blessing in disguise. It’s a bit like taking a trip without a roadmap. Yes, it can be stressful and we may feel lost at times. But we also end up exploring down side roads we may never have noticed otherwise. We see and experience things off the beaten path, and make discoveries of our own. Along the way we find what works for our children and adopt those strategies. Through trial and error, we also learn what does not work, and we are free to discard those treatments and move on.

 

In the world of raising children with autism, no two paths are alike. For my family, I found that enrolling my sons in an intensive, autism-only preschool had a huge impact on their development. They learned, from professionals specifically trained in autism interventions, how to communicate well enough to convey their basic needs. They learned how to sit still (mostly), pay attention, and work independently when required. All of these skills served them well when they were later mainstreamed into regular elementary school classrooms. Now that they are capable of mainstreaming in their school environments, they are learning more speech and social skills from their typically-developing peers.

 

I also moved the family to a tiny mountain town with a small public school system. There are only about 15 to 20 kids in each grade, and my sons are recognized and understood when we are out and about in the community. I found that this lifestyle led to an absence of bullying, and a lot of understanding and inclusion. We also immersed ourselves in the natural beauty of our surroundings, with plenty of hiking, swimming and other outdoor time, which has helped their sensory systems regulate. I didn’t read about this in a book. It was just something I felt, intuitively, that they needed. And it worked.

 

Other families are taking completely different approaches. They mainstream in preschool, or they don’t mainstream later. They live in bustling cities with access to everything they can imagine. Their children attend huge schools with hundreds, or even thousands, of other kids. Their paths are different, but they are finding what works for them as well.

 

Maybe there is a lesson we can take from this. The treatments for autism are as diverse as our children, and there is no set formula that will always work for every kid. The most important strategies aren’t found in books or on websites, but are innate qualities we can all embrace in ourselves. Follow your intuition. Listen to your child. When something works, keep doing it even if you feel silly. If it doesn’t work, discard it and move on. Respect your doctor’s opinion, but also realize they don’t have all the answers yet. And whatever you do, don’t worry about what Great Aunt Hilda thinks. The best advocate for your child is you.

 

So get in the driver’s seat, buckle up, and get ready for an adventure. There is no road map for autism, so you’re going to take some crazy side roads and wacky wrong turns. Sometimes you may find yourself alone on the road, and at other times you may ride in a caravan. You probably won’t take quite the same path as anyone else, but the path you do find will be the right one for your child.

 

 

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This one is for the dads

By on June 17, 2012 in Parenting

daddy saddleHere’s to the dads that don’t mind changing diapers, doing the feedings, getting up at night, running the errands, cleaning up the messes and all the other baby things.

Here’s to the dads that have no problem pitching in with dishes, laundry or other chores around the house.

Here’s to the dads that don’t make their wives attend all of their children’s appointments/meetings/events/etc on her own. No matter what their schedule, they make the time.

Here’s to the dads that get up early with their children, miss out on week-ends with friends, don’t get to travel like they used to and may not get out to the sporting events that they once did… and though they miss some of the freedoms of the past, they wouldn’t trade it for anything.

Here’s to the dads that see mostly moms doing the talking online and at conventions and decide to get involved too.

Here’s to the dads that are stay at home parents while their wives work. Despite what society may or may not think, they deserve every bit as much recognition as stay at home mother’s do.

Here’s to the dads that understand that having a special needs child may mean giving up on the dreams that they had for their child but that their child’s future is going to be wonderful and amazing anyhow and will encourage, nurture and support them every step of the way.

Here’s to the dads that are single parents, despite the fact that history and tradition have not prepared them at all and tells them that they can’t do it.

Here’s to the dads that will play with dolls, roll in the dirt, talk on toy phones and do anything else their child needs them to do… even in public.

Here’s to the dads that can work 3 jobs at a time when they have to, to provide for their family, and still manage to find time for family too.

Here’s to the dads who stuck around when all they could think about was leaving.

Becoming a father and being a dad are two different things.

Here’s to you… the friend, role model, strongest person in the world, the vanquisher of monsters, the guy who slips their kid a dollar or a treat even when mom says no… you’re the man of the house and with that you deserve more than just a day.

You’re a dad. It’s who you are.

Here’s to you. For being you.

Happy Father’s Day.

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This one is for the moms

By on May 12, 2012 in Parenting

to the momsHere’s to the moms…  with your messy houses, dishes in the sink, clothes on the floor, toys everywhere, late nights and early mornings… you deserve far more than a day and far more than a thank you.

Here’s to the moms… you don’t need to be called “warrior moms” any more than a lion would need to be called a “lion cat”, you have stood up to school boards, governments, insurance companies, bullies, nosy neighbors, stereotypes, judgments, assumptions and everything else that the world could throw at you and while not every battle is a victory, there has never been defeat.

Here’s to the moms… you sacrifice, sometimes literally, everything for your child, you think that lack of sleep or social life is a minor frustration in the grand scheme of things, you will go without food before your child ever does, you would literally take a bullet for your child if necessary.

Here’s to the moms… your child is perfect no matter how anyone else in the world may see them, gifted or not, special needs or not. Your child is as important to you as any other child is to their mother. Your child is your world, your child is beautiful.

Here’s to the moms… your day does not belong to a 9 to 5 schedule, you don’t get 2 weeks of vacation each year, you don’t have a cushy retirement to look forward to for your work, you know that being a parent, God willing, is for life… and you wouldn’t have it any other way.

Here’s to the moms… you don’t need to be praised but you also don’t need to be advised… you don’t need to be accepted but you don’t need to be judged… you don’t need people out of your life but you don’t need people in your business, you don’t “need” anything but you welcome a kind hand when offered.

Here’s to the moms… you know that being a mom is more than just being a “biological mother”, it’s far more than just giving birth.

Here’s to you… a human being, doing your best with what you have. Living life as both a guardian and a friend, a teacher and a student. Not doing what you do because you have to but because it is what you do.

You’re a mom. It’s who you are.

Here’s to you. For being you.

Happy Mother’s Day.

 

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A bit of fatherly advice

By on March 20, 2012 in Parenting

father-childEvery parent’s wish is for their children to have a better life than they did… whether rich, poor, big family or small… we only want our children to get the most out of life, and to do so better than we did before them.

Not everyone has the same advice on how to do that and sometimes we down right disagree with others, that’s fine.

So today, I am writing this for my two boys, Cameron and Tyler:

1. Risks

Through out my life, I’ve had a lot of my ideas pushed aside by family and friends that told me that they’d be too risky to try. Take the safe job, make the safe choice, don’t speak up for yourself or you might lose something…  avoid risk!!

If I could go back, I’d tell myself not to listen to any of them.

Sure, some of those ideas were really bad ideas. Maybe some would have failed. Maybe even all of them.

Maybe some would have succeeded too though.

Either way, it doesn’t matter… because right now, I wouldn’t be regretting having not tried. To at least try means that today, right now, I’d have gained the experience that comes with trying. I’d be one step closer to knowing what things didn’t work which would mean that I’d be one step closer to knowing what will work.

Maybe I’d have really really liked one of those things. Sometimes you never know you love something until you try it. Perhaps I’d have loved one of those things so much that the risk would have been worth doing it… and worth doing it again and again.

2. See things through

For all the things I didn’t try, there were still things that I did try… things that required less risk, or no risk at all. The problem with those things was that I’d never see them through.

I’d start something and lose interest, get distracted by life or simply be unable to finish due to my own short comings. What does that mean? It means I didn’t push myself hard enough to know how or to be able to finish what I started.

It is far worse to never finish than it is to fail and end with valuable experience.

3. Embrace the critics, ignore the haters

There is a very big difference between a critic and a hater.

Haters will do their best to tempt you into an argument or to spark your anger. Their jabs have no substance except to incite emotion.

A critic, on the other hand, may be harsh at times, but will offer real observations and sometimes even advice for moving beyond what is revealed in those observations. A critic doesn’t care if you take their criticism or not; or if you get mad or not. They do not speak to anger. They speak to offer criticism. Listen to them. Learn from them.

Critics are the voice of your failures and failures are the experience you take with you when you do something better next time.

4. No one was ever able to stand out by blending in

If there is one thing that school pounds into you, it’s to blend in. Do what everyone else is doing and they might accept you, be different and they will likely laugh or even bully you.

I’m going to tell you a secret that you might not believe until later… school doesn’t matter. The kids at school don’t matter. What you learn at school doesn’t matter. Trying to fit in with all of that will only result in one thing… you won’t matter either.

Be different. Be proud. Stand up and stand out and do it so well that people take notice.

When you think about all of the greatest people in the world, think about what they do to be the greatest. Do they try to do what everyone else is doing or do they try to be different?

Don’t worry about better or worse. Because you will be worse. But you will also be better. That isn’t what it’s important. It’s not always the best that stand out. It’s not always the best that are remembered.

Just be who you are and don’t ever let anyone tell you that you need to blend in. You do not need to blend in. Not in school. Not ever.

5. Don’t let fear stop you

Dads aren’t supposed to be afraid of anything, but we are. We’re afraid of a lot of things. Sometimes the same things that you’re afraid of. The only difference is that it doesn’t let it stop us, or at least, it shouldn’t. But even dads are human.

I’ve let my fear stop me a lot of times. Remember #1? Risks? That’s what I’m talking about. When a risk seems too big, like I might lose a lot… I let my fear get the better of me and I didn’t even try.

There’s nothing wrong with being afraid of the risk. There’s nothing wrong in being afraid of anything. But don’t ever let that fear be what stops you.

Let me put it another way, maybe you’re thinking of doing something really big but the risk in doing it isn’t worth the reward. That’s fine. Don’t do it. You’re smart. That’s entirely different than not doing something because you’re afraid.

There were some things that I was smart to walk away from. Then there were also things I walked away from simply because I was afraid… that’s not smart.

6. Go for what you want

Figure out what you want. Figure out how to get it. And do it. No matter who says not to. No matter what the risks are. No matter how afraid you are. No matter who might be looking and thinking you’re strange for wanting it.

Do it. Do it for me. Do it for yourself.

You’re already a better person than I am. You have a much better life waiting for you than what I had. You just have to step up and do it.

From Dad

I am writing this for both of my sons, Cameron and Tyler.  It doesn’t matter that one has autism and one does not. This advice applies equally.

No two lives are the same, no two journeys are the same. That’s how it is supposed to be, with or without autism.

Do these things that I could not and you will be happy, I will be happy too.

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Do what you need to do, I won’t sue

By on February 16, 2012 in Autism, Parenting

I often hear horror stories in the news, from other teachers and all over the internet about parents being in some epic battle with their child’s school or day care because their child had to be restrained, separated from others or other cases like that.

Most of the time, everyone sides with the parent in a unanimous cry of outrage in the complete and total mistreatment of their child. Most of the time, that comes with very little information as the schools are often unable to comment on the situation, same with any enforcement personnel. This means that we only have the parent’s information to go on.

I won’t argue however that most of the time, that’s all we really need. What’s wrong is wrong.

Still though, this creates a situation in society that basically ties the hands of those teachers and care givers should they truly have the right or need to handle a situation where those circumstances arise.

Dear care givers

What I’m trying to say is, if you care for my child and he is in danger of hurting himself or someone else, please do restrain him. Please do send him for a time out, even to some other room if need be.

I won’t sue. I won’t call the media.

If my son hurts himself… in a private area… please do check it out. He’s hurt, he needs attention, give it to him. I understand that it’s not sexual, I understand that you have his and my best interests at heart.

I won’t sue. I won’t call the media.

But be warned

If my trust is abused or my understanding is taken advantage of, I will hunt down the person and make sure that no one finds them until skyscrapers start going up in remote parts of northern Canada.

My children are that important to me… but they’re also that important to me that I don’t want to see his care givers afraid to touch them for fear of me being the type of parent to make it a national news story.

time out chairThe reality

The reality is that when my son completely loses it and hurts himself or his little brother, or is breaking things, or is just generally out of control… I will put him in his room. I will drag him there if I have to.

And I fully understand… no, I expect… that anyone else that I have entrusted with the responsibility of watching him would do the same.

I won’t call it barbarism when someone does the exact same thing that I would have done in the same situation. I won’t give my story to the first reporter that will listen to me.

The reality is that I understand how it’s come to this but I also feel disappointed that it has.

Somewhere, lines have blurred… and it’s often due to those who take advantage of the situation or react too harshly to the situation. Those care givers who go overboard and actually hit a child, or do something else that is completely inappropriate.

There’s also the “not knowing” that we must face… since our children aren’t great at relaying the details, we have to just hope that the teacher’s telling the truth. And if they did do something wrong, what would be the likelihood of that?

In a perfect society, every person that comes into contact with a child would be certified do-gooders with halos and wings that could never do any harm… but there is no perfect society and that leaves us skeptical and scared.

But I refuse to hand cuff those who care for my children by never letting them do what I would do myself to ensure their safety.

If I wouldn’t do it, damn straight I won’t let them do it. But if I would take an action, such as dragging my kid, kicking and screaming to a time out… then I fully support his teachers/care givers doing the same.

I know a lot of parents won’t agree with me, or simply aren’t willing to let “strangers” do those sorts of things… I can understand that. But it is how I am and how I feel about it. If I don’t trust the person that my son is with, he won’t be with that person. It’s that simple.

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