Archive | February, 2013

The yin and yang of parenting on the spectrum

By on February 28, 2013 in Autism, Parenting

We’re coming up on the one-month mark for a new ADHD medication for our seven-year-old son, who’s also on the autism spectrum. It’s always tricky to be objective about tracing results back to causes, but so far, the results are encouraging.

For the first time, he’s asking open-ended questions. Questions that indicate a curiosity about how things work, from a car engine to the mechanism behind a video exhibit at a museum. He’s been able to curtail some of his impulses – like doing the puzzle he just opened– when I announced it was bedtime.

The tattoo I got for my son and daughter works for my husband and me, too.

The tattoo I got for my son and daughter works for my husband and me, too.

It’s gratifying to see, not to mention a relief. After a bad experience with a different ADHD med last summer, the absence of negative

consequences is a positive in and of itself.

For me, though, it also provokes guilt. Because the only reason our son is on this medication is that his dad pushed for it.

Feeling burned by the first med, I resisted our doctor’s suggestions to try this one for almost six months. My husband didn’t oppose me, but gradually, after receiving input from school, he began his own low-key lobby. Finally, reluctantly, I agreed to try it.

And so far, it appears he was right and I was wrong. Thus the guilt. Did I deny our son six months of growth and progress because of my supermom proclivities? I’ll fix it/handle it/solve it myself. I don’t need any help from some drug.

This isn’t the first time my husband has been the ballast in parenting decisions. It goes way back to infancy, when we started part-time daycare. I felt like I should handle all the caregiving myself. That’s what a good mother does, after all. Even though I hated it and was going stir crazy at home all the time.  Mike took the reasonable approach. Let’s try it. It doesn’t have to be permanent.

Seven years, two kids and one sane mother on, it was by far the best decision for our family. Yet I still don’t know if I could have made that decision myself. So on this, my first post on Autism from a Father’s Point of View, I want to ask: What is it about dads? Is there something in the Y chromosome?  Is our dynamic reflected in your parental roles, too? And is it the balance that matters most, no matter who provides the yin and yang?

– Cari Noga is a writer in Michigan and mother to a son on the spectrum and a neurotypical daughter. You can read her blog here. In April she will publish Sparrow Migrations, a novel about a 12-year-old boy with autism who becomes obsessed with birds after witnessing the “Miracle on the Hudson.”

 

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With autism, consider making the path your goal, not the goal your path

By on February 26, 2013 in Autism, General

Read a “how to be successful” book and it will tell you to start with a 5 year goal, then break it down to 5 individual yearly goals, then break those down to monthly goals, then to weekly and eventually to daily goals. The idea being that you set your sights on where you want to be and break it down to the steps you need to take to get there.

When our child is diagnosed with autism, we tend to focus on them having a family of their own one day, a steady job and all that “normal” stuff we think will be what makes our child a happy grown up some day. Then we deconstruct that backwards into smaller goals. With autism, it’s not as easy to break down into daily or even weekly goals but that’s what we’re thrown into by way of scheduled therapy sessions, ABA and strict routines.

And when something doesn’t appear to be working, we change paths. Our focus being the goal no matter which path we need to get there. Rightly so, I mean, this is our children we’re talking about. A parent does what ever a parent needs to do for their child.

When Cameron was diagnosed, we were faced with a lot of wait lists. We were in the right place to get the best therapists and everything that Cameron would need but we’d have to wait until after he was 5 years old to get it. We searched around and found a school with a new autism program where a select few classes are specifically for autistic children.

We were faced with a choice: wait for what we were told are the best services available or move, losing most of everything we had, and get immediate help but unsure of how well it would go. Back then, all we knew was that it was a new program at a little school in a little town.  So, start immediately with the unknown or wait several years for the best.

I look back at it as more than just a choice of starting then or starting later, I see it as choosing between the end goal and the path to get to that goal.

Focusing on the end goal, to me, is a way of focusing on the problem. You still love your child and want what’s best for them, but you’re so very focused on removing what ever road block is in front of them that the path to reaching that goal becomes unimportant.

You spend your time talking about the problem, dwelling on the problem, asking for advice on the problem, reading about the problem, writing about the problem, trying different things to solve the problem… eventually the people close to you hear you talking more about the problem than about your actual child. They’d never tell you that and it would never feel like that but let’s face it, you become a bit of a downer dude.

In this way, the problem becomes your path to the goal. “What ever it takes” is driven by the road block, by your drive to over come that road block and reach the end goal.

Focusing on the path, however, allows you to still get to your end goal but the way in which you look at and approach the situation can be drastically different.

Consider this, that the one key constant between now, your end goal, all of the road blocks, all of the successes and everything in between, is your child.

Given all of that, if you could choose only one thing to put your focus on and keep it there, what would it be?

It’s not that I suggest giving up on anything, only shifting your point of view a bit.

You can’t force the future to be what you want it to be, you can only do your best here and now, in the present and trust that it will be enough to take you to the future that you want. What you have right now are not problems to be solved in order to get the outcome you desire.

You have a child. A child that is waiting for you to line up some cars too. To spin them on their roof. To get more building blocks for sorting by color. For sitting down and drawing trees, or trains or what ever they love to draw too. A child that loves you so very much even if they can’t find a way to express it to you. A child who doesn’t want you to think they’re a burden and certainly not a problem for you to solve.

The path to the goal? It’s a kiss on the head as they sleep. It’s a rare hug out of nowhere. It’s a favorite blanket that you always remember to have for them. It’s giving them the freedom to leave the dinner table in between bites if they have to. It’s in reading the same bedtime story 5 years in a row.

By the way, that school that we gave up everything for? Best decision ever. The teachers, EAs and entire school is just so kind, caring, nurturing and understanding that I believe Cameron never would have come as far if we had gone to “the best”.

We focused on our child. In letting him be a child. In joining him on his path rather than forcing him to take our path.

If you want a new house or a car or a boat, make yourself a plan of action and focus on your goal.

If you have a child with autism, make yourself a goal and then focus on your child. With your love and support, your guidance and encouragement, they’ll lead you to it. You’ll just have to follow their path.

path_rainbow

Make your path the goal

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Autistic people should be

By on February 23, 2013 in Autism

It’s fully understandable if the title seems to be cut a little short. It does sound like there should be something following that but I can assure you, I intended it exactly as I wrote it.

Autistic People Should Be

Autistic People Should Be

Autistic people should be. That’s it.

Autistic people should exist. They should be accepted. They should be treated with respect. They should just, very simply, be.

There’s a really great “flash blog” going on right now, based on the phrase “autistic people should”. The blog can be found here: http://autisticpeopleshould.blogspot.ca/

The reason for this is that some folks noticed that when they typed in “autistic people should” into Google, Bing or even Facebook’s search, the auto-complete feature of those search forms would finish the phrase for them, prompting them to search for “autistic people should die.”

Basically, this means that this phrase is out there so much that all these search places try to make their best guess that it’s most likely what it is that you’re searching for.

This is disturbing, to say the least. I can’t imagine most people feel this way or would ever want to be searching for that.

But whether that is the case or not, it’s a great idea to write up a blog post or to get some notes out there on the internet to force these search engines to offer up some alternative choices, or better yet, to no longer have the current suggestion listed at all.

And so, this post is dedicated to just that. My contribution to the “autistic people should” phrase and how I believe it should end.

It’s as many before me have said, without autistics or at least, autistic traits, there would be far less engineers, mathematicians, scientists, computer people and on and on. Autistics have always been here, even if it seems like it’s a relatively new thing. Autistics have contributed to far more through out history than you could ever imagine.

Without autistics, there would be far fewer savants, fewer advances in technology, fewer discoveries in science. Without autistics, well, who knows… perhaps we never would have even had the wheel. That seems a bit far fetched, right? But think about how long human history is and at what point, somewhere, some autistic may have contributed something important that without it, we could be hundreds of years behind where we are now.

Bringing it a bit closer to home, imagine a young couple, naive and arrogant, their whole lives ahead of them. They don’t know what autism is but assume it’s just bad and that autistics simply just should not be. Then this couple finds themselves as new parents and their child isn’t making eye contact or responding to their name. Would these people still feel as they did before? Would they still think that their precious little child should die simply because he or she is different? Or would they do everything in their power to ensure that their child has a bright and happy future?

Autistics should be.

Because the alternative is unthinkable.

 

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Autism, Fathers, The Future and Denial

By on February 16, 2013 in Autism
Is this what a father sees?

Is this what a father sees?

Far too many moms have asked me why their husbands might be in denial or worse yet, cold and distant to their child. Once they got the autism diagnosis, everything changed.

Many fathers struggle with it. It’s not just fathers though but mostly fathers it seems. And I think there are many reasons, denial being the most obvious but I think it’s more than that.

For most moms, when a child is born, they envision a bright and beautiful future for that child but it’s pretty abstract. Go anywhere, do anything.

For most fathers though, it’s usually much more specific. Like doing things with their child that they had done with their own fathers, or teaching the child how to do things that they love to do or having their child follow in their footsteps or even more so, to exceed those footsteps and be a much better person than they were.

And with an autism diagnosis, all of that is destroyed and it feels like it has been ripped away from you.

For moms, because their vision is so abstract, it doesn’t feel so devastating to lose. For many, it never even feels lost, just… it’s going to be different.

But many dads have a very hard time coping with that. Not many people like having their dreams ripped away from them and even less so to have their dreams for their children taken.

That can make a man distant and even seem cold. They sort of give up.

I’m not saying this is true for every father. As I said, there’s a lot that goes on in a person’s head when their child is diagnosed with autism or anything really.

But, if this is the case, or even just denial, then it may just take time to accept that, even though his dreams may be gone (they may still not be actually, who knows?), there’s still room and time for new dreams. A child is a child and even if the future seems less certain now, it still filled with unlimited potential.

If it’s your husband or anyone else you know that seems to be struggling with this feeling, all I can suggest is time, patience and perhaps a gentle reminder:

There’s still so much life left to live where anything can happen.

It would be a shame to miss what will happen because you’re too busy focused on what won’t happen.

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I think I speak for everyone when I say that I speak only for myself

By on February 14, 2013 in Autism

If you read blog posts or news articles or random bits and pieces of things from people, do you honestly assume that the person is speaking on behalf of all those within their community? How about the world?

Chances are you haven’t really put much thought into it at all. You just read what someone says and go about your day. As it should be.

A funny thing happens though, when you are one of the people writing some of the same (or similar) things that other people are writing… you start getting defensive. As if somehow, in some way, those other writers are writing on your behalf and they’re not getting your message right at all.

It all starts to spiral quickly once one person starts naming another person and it gets ugly fast.

But for the most part, I think anyway, most readers don’t care about any of that and most never assume that one person’s writing is indicative of the way everyone thinks or what their experiences have been. I’m not saying they definitely know better and always think that each story is unique but rather that most people don’t even think about it at all.

Most people enjoy what a writer says and comes back to read more another time or moves on to the next thing they read or they go back to stopping their kids from fighting.

I think I speak for everyone when I say that I speak only for myselfIf you’re a writer/reader, try not to take it so personally when someone’s opinion is different from your own or if they’ve had conflicting experiences from your own. If it does seem that some other writer is attempting to speak for you, let it slide. You know they don’t. The reader knows they can’t.

If you’re a reader and not a writer and you’ve never really given it much thought, let me put your mind at ease right now. What I write, no matter what it is, is based on my own opinions and experiences and I speak for no one else but myself.

And if you read something from someone that does claim to be speaking on behalf of others, keep in mind that they can’t possibly do that. Don’t get mad at them, but just keep it in mind as you read. Their experiences and opinions are valid too, even if they do have an enlarged ego.

Sometimes they might even have facts and figures to back up what they say with such claims as “the majority of” and so forth. If you think about it… “most” people still isn’t everyone. Meaning, they still can’t speak for everyone.

Most of all, if you do see a writer naming another writer to discredit them or make an argument, keep an open mind that these are two passionate people, both with valid yet conflicting opinions. And try to filter out the ugliness as best you can. Chances are, they’re both not wrong. They just might not be able to see that at the time.

You really can believe everything you read, if you remember to keep in mind the source. They are human too. They are just one person and that’s all that they can speak for.

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