Tag Archives | behaviour

The yin and yang of parenting on the spectrum

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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I have Aspergers – Part 3: Life after an autism diagnosis

For more on this series, go back and read part 1: who I am and part 2: getting the diagnosis.

In the middle of my 3+ hour assessment, the doctor took a moment apart from the testing and asked me “so what exactly is it that you’re hoping to get out of this? What are you hoping will happen if you are diagnosed with autism?”

I swear to you, with no exaggeration, I had rehearsed answering that question in my head at least a dozen times prior to going into that assessment but the moment it came out of his mouth… I didn’t have an answer.

changeChange

Up until the doctor had asked me the question, out loud, I had always assumed that nothing would change. That I really only wanted the diagnosis for my own curiosity, to answer questions I’ve had and to maybe help me with my own identity. Not just for myself but for where I stand in the autism community.

But when he asked me… even though I heard the specific words… my mind told me that he had actually said “what do you expect to change?”

And I had nothing.

I’m a grown up now. I don’t change. I have always been how I am. I always will be.

A doctor telling me I have autism certainly wasn’t going to change that.

In fact, if anything… it was going to cement it!

If I am how I am because it’s a part of who I am… do I even have the choice to change it?

I thought about my son, Cameron, who’s been diagnosed with autism for 3 years now… take social gatherings as just one example. I know full well that he will never ever enjoy social gatherings, much less want to go to them. I know that he is going to have to if he is to learn to cope.. but that being who he is… he’ll never actually want to go.

And I can’t change that no matter what I could try or how much I could want to. It’s who he is.

If I come to accept that in my son, that there are just some things that won’t and can’t change for him, I would have to do the same for myself.

Line of thinking

So I get to wondering why I heard a very different (yet kinda similar) question in my head than what actually came out of the doctor’s mouth and I start to wonder why I am so concerned about whether or not I could change even if I wanted to.

My wife accepts me for who I am. I mean, she married me… she must. But even more so since we came to the realization that autism would explain a lot about me. Far more, even still, since I got my official diagnosis and confirmed everything.

Still though… a part of me doesn’t want her to. She shouldn’t have to accept that I won’t change for her. Wait, let me rephrase that…

She and I have come to accept that our child will always be who he is, not just because of who he is but because autism kind of enforces that more so. He’ll never like some things, he’ll always obsess over other things, he’ll prioritize things differently than most people might… we want to help him with these things but accept that it’s just how and who he is.

I love and cherish my wife for being willing to do the same thing for me but I really don’t want her to have to do that. A marriage isn’t about one person doing all the changing while the other does not, whether due to a disorder or not. It’s supposed to be a compromise and a team effort.

The diagnosis really hasn’t changed anything… not yet. And while I feel like it should have given me every excuse I would ever need to not even try to change anything… it has actually done the opposite.

No, I don’t expect that I’ll ever enjoy social gatherings or anything that I’ve never enjoyed in all my years thus far… but still, I want to do better than just “cope”. I want to prioritize differently. I want to do better.

The wonderfully unexpected outcome

One could argue that a strong desire to make my marriage work even better than it did before is the best one could hope for from getting a disorder diagnosis… but actually, it’s not the best part.

The day that I received my diagnosis, I had my son Cameron sit down after school so that I could tell him the news.

I asked him “Cameron… who in our family has autism?”

He replied “Me.”

I said “Well, I talked to the doctor today and found out something new… you’re not the only one in our family that has autism.”

He looked at me said “You have autism now too?”

I told him “Well, I think I always did but now I know for sure. So now I know, and you know, that you’re not the only one with autism.”

He kept his head down as he played with his toys.

I asked him “So? How does that make you feel?”

He said “good” and left to play.

A couple of days later, while the four of us (myself, my wife, Cameron and his little brother Tyler) went swimming at the local pool, Cameron and I were off by ourselves and he said, “Dad, you know why you and me are the same and Tyler and mom are different?”

I said “No, why?”

He said “Because we have autism!”

Since that day, he’s been quite excited about how he and I are the same… and to be honest, so have I.

When I think about the future he has ahead of him, the great times and the struggles that I know he’ll have… I know now that I’ll be able to help him in a way that I never could have before.

I mean, I’m still me. It’s not like the diagnosis gave me Aspergers. I had it before hand. But now? Now that I know it and now that he knows it… he’ll know that I understand what he’s going through.

He’ll know that he can talk to me about just about anything without worrying that I’ll think he’s weird, or strange or.. what ever.

What ever may come, I’ll be there for him. And he knows it.

He’s already a lot happier. He already feels less alone.

That alone makes the diagnosis… no, it makes my entire life worth it.

going forwardGoing forward

Everyone handles news differently, and life situations, goals, stresses… well, you get the idea. So I don’t expect that anyone else would receive an autism diagnosis and feel motivated to change. In fact, if I was to guess, I’d imagine not many have that same reaction.

But that’s part of the beauty of the diagnosis, I think. You never really know how it will affect you until after it does.

You can practice the things you’ll say and prepare for how you want to feel about it… but you just won’t know until after the fact.

And it’s true, doctors could get your diagnosis wrong just as easily as you could have gotten wrong yourself. So no, it’s not a guarantee… maybe I was sure, maybe the doctor is sure… and yet, maybe I still don’t actually have Aspergers. Seems odd to think about, doesn’t it? It seems odd to say it… or write it.

Still though, as much as life has no guarantees for you and there will always still be some margin of doubt… it’s still very relieving be officially diagnosed with Aspergers.

Which is odd.

Think about it.

A doctor has just told you that you have a disorder… that you fit the criteria somewhere in their big book of “things wrong with some people” and you feel relieved by it.

It’s also weird to think that, my entire experience with autism and the autism community has been through my son. I write about him, I experience autism through him, I learn about autism from him… and yet, now, with a single line on a piece of paper… I realize that my entire experience with autism was actually in fact… my own entire life… and I didn’t even know it.

Well, ok, I sort of knew it, or suspected it, for a couple of years there, most recently… but you get the idea.

The point is, it’s a relief. Because I know what I’m dealing with now. I know what I’ve always been dealing with only… I didn’t really know I was dealing with it. To me, life was always just… hard.

Which brings me to my final thought…

hurdlesHurdles

I know this young woman who’s whole life has revolved around her. She wouldn’t even let having a child at a young age interfere with that. She partied all the time, was only concerned about what her circle of friends thought about her, neglected her family, neglected her schooling, work and other responsibilities, she felt she needed to just do what ever she wanted to do and not care about anything else.

But then, not too long later, I noticed that she was starting to ask a lot of questions such as “why is life so hard?” and “why does everything have to suck for me so much” and “what did I do for all this crap to happen to me?”

I shook my head. I really did. Loudly. You’re trying to picture that right now, aren’t you?

Since getting my diagnosis, I’ve taken a long look at my life… there’s been a lot of unhappiness. There’s been a lot of discomfort. To be honest, I’ve asked a lot of the same questions. Why is life so hard? Why does the universe seem to hate me so much? Why does nothing ever seem to go my way?

But you know what? I finished college. I have been a web developer for over 12 years now and done well. I have a beautiful wife, two great kids and a roof over our heads.

I’ve made something of my life… despite, what I know now, is something very very real. A very definite hurdle that gave me a very real reason to ask… why me? Why is it so hard? Turns out there really was a reason.

One thing this diagnosis has done for me, as cruel as it sounds, is that it’s made me want to sit down with that young lady, put my elbow on the table and my chin in my hand, tilt my head sideways and say to her “Life is hard huh? Nothing goes the way you want it too huh? Please, tell me all about how hard it is for you, party girl.”

Because a few years ago, I’d still shake my head at her but I’d sympathize because my life was hard too. Sure, I know it’s because she’s done it to herself, where as I did not. But I didn’t know why life was hard for me at the time.

But now? Now that I know what I was actually up against that whole time? In comparison to her doing anything she wanted and yet complaining that she can’t do anything she wants??

Yes, I’m feeling a little… I don’t even know what you’d call it.

See, I don’t want to “smack some sense into her” so to speak (I’m not voilent so please take that as the figure of speech that it is), but rather, I’d really like to use what I’ve learned to help her see just how good she’s really had it all this time.

I’d really like for her to see that her biggest hurdle isn’t something that she can’t identify… it’s her. Her choices. And that she has the potential to do just as well, in fact, far far better than I have, if only she could see that.

If I could overcome what I didn’t even recognize, then she can certainly do better when she doesn’t have that to deal with.

All this is to say… I just want to help. I feel this diagnosis isn’t about me. It’s about that young woman. It’s about my son. It’s about my wife. It’s about anyone who reads what I write, looking for answers or inspiration.

Before, I’d say that the one with Aspergers (in this case, me) is the one that need not change, need not focus on anyone but himself following something like a diagnosis, to reflect and find purpose.

But now? Now I’m thinking… I do need change. I do need to focus on those around me. To help as best I can. To do the best I can.

My wife and I will be fine. I will do my best to meet her half way in all things.

My invisible hurdles will not be my son’s invisible hurdles.. they’ll be completely visible, and I’ll be there to help and encourage him over them.

And for those who think life is hard, or need a little inspiration or simply have a question… I want to be there for them. Maybe not in person, because the diagnosis didn’t hit me that hard! I still don’t much like social settings. But certainly, I can help online.

My blog, through social media, through my other writings… autism has been important for me for a long time now. Because my son is important. But now, now it’s important because it’s important to me.

I’ve said that 1 in 88 is not the number of people affected by autism, it’s the number diagnosed… well, now, some of those affected people are affected because of me.

And I am going to do everything in my power to make sure that the effect it has is a positive one.

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A label by any other name smells just as… autism

Do you like the title of this post? Is it catchy? Humorous? Weird? Clever?

Well, maybe not clever. The point is though, that the title of this post kind of hints at what you might expect in this post but it really doesn’t give you a great idea of what it really contains. It’s just a title. It’s not the whole story.

By now I’m sure you have it figured out, I’ve hopefully made the point.. right? A label doesn’t tell the story. A label is just a title. Right?

Wow, this was a short post.

Wait! I have more.

Diagnosis Denial

I’ve heard from some people that suspect that their child could have autism, or at least some autism-like traits… and they’re afraid to bring it up with their doctor. They don’t want a diagnosis because they don’t want their child to have the label for the rest of their lives.

Then there are those who do get the diagnosis for their child and refuse to believe it. They absolutely will not believe that their child must bare this label for the rest of their lives. They try to pretend that the diagnosis never happened and simply continue to raise their child as they would have anyway… forgoing advice, help and services.

Denial is far more common than you might think and while understandable, it can be harmful. There’s an expression: “It is easier to build up a child than it is to repair an adult.”

What that means is that early intervention can go a long way to helping your child progress, grow and develop the skills they need to be successful and independent adults. Any delay can hinder that progress. One year missed in the early stages can take several years to repair later in life. People… ALL PEOPLE… develop in their early years and what is established early is what makes up their core personality later in life.

Hate Autism? Love Autism?

There have been a lot of discussions (quite heated actually) around the autism community because some parents are claiming to hate autism, and really… I can’t blame them. For some people, their child will likely live in a home for the rest of their lives. They’ll be bullied, they’ll have no job, no family… they’ll miss out on a lot in life.

Still though, in this case, I think it’s a label issue more than anything.

I look at this way: when a child misbehaves or does something wrong, “experts” and books teach us that as parents, we should redirect or encourage proper behavior… but if need be, point out how what they did was bad, not that they were bad. Or to put it another way, never tell your child they are bad, but rather that the action they took was wrong.

In this way, as an example, hitting is bad, not the child that did the hitting.

To go back to autism, I think the parents hate that their children can not speak, can not integrate into society, can not do all of the things the parent wishes they could do… due to the autism. They hate the barriers, the severity… not the actual autism itself.

They hate that they haven’t found a way to communicate. Sure Carly Fleischmann (go buy her book by the way!) found a way to communicate despite being unable to speak… but to a parent that has yet to find a way with their own child, they’ll hate it.

They’ll hate that they can’t communicate. They’ll say that they hate autism… it’s an emotional response.

It doesn’t make it right, any more than telling your child that they’re bad when they do a bad thing. The experts are right. It is better to focus on the action than the person. But as an emotional response… it’s understandable, even if not really right.

Labels… sometimes they get mixed up in the heat of the moment.

Person first language

I thought I had finished with this topic when I wrote the last word on person first language… I still share the link to that post with people just about every day. That’s because there are people telling me, almost every day, to refer to autistics one way or another. (some people prefer ‘autistic’ while some people prefer ‘person with autism’)

The fact is, they’re both a label by another name. The person is just as sweet. (notice I didn’t say smell? For those of you that don’t know the reference from the original quote, sorry)

Yes, there is a lot of power in words and choosing which label you want to use does have an impact on how you think about a person. Still though, it doesn’t have an impact on who that person is.

You’ve labeled a person. They’re still a person that doesn’t really reflect the label at all.

I know, some people would and likely will argue with me that it does reflect the person, but going back to the beginning of this post, a title hints but does not tell you the story.

I know some autistics that don’t care what you call them and have no interest in the autism community or advocating at all. They just live their life as a person who lives their life.

For those people, calling them autistic or a person with autism or lazy or big boned or funny looking or anything else doesn’t really tell you anything about the person at all, does it? Maybe to Sherlock Holmes, but for most people, we wouldn’t have a clue where they’ve lived, the type of people they hang out with, what their favorite food is… nothing.

Insisting on a label, or fighting over a label, seems like an odd way to spend your time when you could have been learning the story instead.

A headline

For the most part, I’ve been down playing labels in this post. I don’t want you to think that I am completely dismissing how important they are though. Although, I attribute a lot of that to just how lazy or assuming people are.

The greatest example of this is in the media. I believe we’re all aware of news agencies common practice of “sensationalizing” a headline to grab readers.

I wrote about it in “The truth about how a research study goes from the lab, through the media, to the people” where you can actually see how a story goes from a researcher to the public and just how radically the headline can change over time.

The danger of this, which happens far too often, is that many readers will take the headline and be satisfied with it. They’ll come to conclusions and share it without having ever read the actual story.

This translates into the real world of labels where, when someone says autism, a person might automatically think they know all about a person. They assume that an autistic will be prone to violent meltdowns, they won’t look a person in the eye, they won’t be able to talk properly or at all, they’ll spin around or flap their hands a lot… any number of things.

Find any 5 autistics that you can and you’ll quickly find that these generalizations are just silly. Sure, one or two might do one or two of the things I’ve listed… but more than likely, all 5 will be completely different where none of which do all of those things.

And those are just possible autistic behaviors. That is a far stretch from assuming you know a person.

So yes, labels have their power, because people want to make assumptions based on them. They want to know the story before they know the story.

A label

amazing

Love the shirt!

A label is just a label… it’s a short form reference to an entire story that you have yet to discover.

There’s a whole lot more to The Lord of the Rings than it’s title and there’s a lot more to a person than the title you label them by.

So make sure you use a label properly, use the label you prefer most and most of all… never assume you know the story based on the label.

My son’s label is ‘Amazing’. If you want to know why, you’ll have to get to know him and learn his story.

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Opinions

My 13-year-old son Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfect normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex, who has autism, presses three (not our floor) and nine (our floor). “Alex, press five, please.”
Noooo!” he says. “Alex, press five.” “Noooo!

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

Noooo!

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though, because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please…  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting plain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

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The complications of having delayed sensory overload problems

I have a bit of a booming voice, it can get loud… so when my dog is particularly bad or my boys stop listening and I raise my voice… it gets attention. I’m not yelling or screaming out of control by any means, it’s just… raising my voice is… loud.

The problem with this is that my son Cameron is especially affected… since a sudden loud voice like that can send him running to hide under some blankets.

At least when that happens though, it’s instant. I’m done, he’s done… we go about our day. No worries.

The real issues come into play when it’s not done and over in an instant.

A positive is a negative

Cameron shows some pretty amazing resilience sometimes when it comes to being able to handle himself. Yesterday was a perfect example of this.

My boys were invited to a birthday party at an indoor playground where kids were free to just go anywhere and do anything. There were games all around, flashing lights and a huge network of netting and tubes to climb and go through.

A child’s paradise!

house of wee

Cameron is in green

When we arrived the place was full which meant the entire place was just a wall of noise. An occasional crying child somewhere in the distance, lots of screaming and a bit of laughing mixed in.

Cameron and his little brother jumped right in and played just as any child should… it was quite nice to see. They had a lot of fun.

But I knew, I just knew that this was going to be too much. It was too much for me and I wasn’t right in the middle of it.

See, Cameron won’t just have a meltdown right in the middle of the place… instead, he’ll store all that pent up energy until he’s back home where he feels safe.

So, even though he can have a great time and handle himself quite well for quite some time… it comes with a price.

Solving the mystery

At first, this presented quite the challenge for us as parents as we’d have to figure out why our little guy was completely out of control for a day or two. To us, it would seem completely random that he’d just be really moody, extremely hyper and very much unwilling to listen to us or do the things we asked of him.

But it wasn’t random. It was actually very much a cause and effect situation (which most things are), where the effect was hyperactivity, irritability and lack of control… and the cause was over stimulation that no one had noticed.

What would happen is that my son would go to school and they’d have an assembly, or go on a field trip, or a party like the one I just described… something somewhere would happen and even though my son had a wonderful time and everyone thought he was just the most perfect little boy… there was actually a time bomb building up pressure, waiting to get home.

The biggest thing is, it’s entirely up to us as parents to solve that sort of thing too because no one else will ever see it. They only see the boy that holds it all together during the day.

Over time, I’ve come to recognize the clues though. For example, at that birthday party, when it came time for everyone to sit and have cake, all of the kids were excited.. but only Cameron bounced in his seat. Literally.

He had so much pent up energy in him, beyond what the other kids had, that he quite literally could not keep his butt on his seat. And while he was still quite happy and having fun, I knew that if he can’t keep his butt on his seat even after I ask him too, that it’s a sensory problem that’s been building up.

Something he just has to do for himself

This is one of those cases where, we as parents, could decide to just not go to those places so that we don’t have to deal with the after effects but that’s not very fair to him. He loves going to those places and doing those things.

We could read every book we have and talk to every professional we can find and try to set up systems and procedures to deal with the after effects at home in a constructive way.

But ultimately, this is something that he has to learn to deal with. I can help to guide him as best I can, help to calm him, focus his energies somewhere… but this is something that is likely to stay with him for the rest of his life.. unlike me.

And to be honest, I think he’s starting to get it. When he gets home, he’s still moody and hyper but he’s learning to take time for himself to go off and make believe something on his own. His little brother gets mad sometimes that he can’t go be with his brother but it’s obvious that it has to be that way.

When he’s given his space and allowed to get that energy out through pretending his favorite video games, pokemon or bey blade battles… what ever it is he needs to envision… it works for him. At least usually.

It’s great that he’s able to do that. And it’s even greater that he’s able to put it all aside in the moment and be “just one of the kids” when there is fun to be had.

It’s been hard for us to figure out and to deal with… I’m sure it’s been even harder for him… and we’ll always get people asking questions about it as it’s not quite ‘normal’… even by autism standards… but it is what it is and it works for us.

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