I have Aspergers – Part 1: Who I am

By on April 23, 2012 in Autism

I started my autism blog with a very specific focus, which is why I named it “Autism From a Father’s Point of View.” It was to be a place for me to write about my son, Cameron, his growth with autism and what I’ve learned along the way.

It was never meant to be about me.

But things have changed.

I now have an official diagnosis.

I have Aspergers.

In Retrospect

autism tag cloudShortly after tucking our boys into bed one night, my wife and I talked about our son’s traits and which were due to him having autism and which were due to him just being an average little boy.

During a lull in the conversation, my wife said to me: “You know, that sounds a lot like the way you are” and it hit me like a ton of bricks.

I have autism!

In that instant, I remembered events from when I was 2 and hurt myself or was scared, times when I was bullied, times where I said or did something wrong and the guilt still haunts me, times where I smelled or tasted or felt something so strong that I couldn’t stand it, all the times I’ve beat myself up for not being more social with people, all the years I stayed in my room, by myself rather than be with people, the way I’ve never really fit in with my own family, the way I’ve obsessed over things… my entire life hit me in a flash.

It was at that point, a couple of years ago now, that I became a “self diagnosed autistic” but I would never dare tell anyone. Not because I was afraid of what people might think but more so because I could never tell someone something what I was not absolutely certain of.

Who I am

I am the father of two wonderful children and a really great wife. My oldest son has autism. And thus, this blog was born.

That’s who I am.

Even though I was totally convinced of that and content in that knowledge, I still had lingering questions. Did autism explain so many events and experiences in my life that still stick in my mind as clearly as though they had happened just a short time ago?

It sure seemed to fit. But could I tell anyone?

If I became a “self diagnosed autistic”…
Would it define who I am?
What if I was wrong?
What if I got a diagnosis back and it said I did not have autism?
What if it did?
Would the diagnosis define who I am?
Would it reshape, in my mind, who I’ve been all along?
Would it make any difference at all?
Would it change who I am in the eyes of others?

And so I kept it to myself… well, to myself and my wife. She was the first to make the connection, after all. Which helps… having someone to talk to about it.

But for a long time, or so it felt anyway, I kept it to myself. I think it felt like a long time because I have been so active in the autism community. Often speaking up, often speaking out… and holding back the one thing that I felt should be the most important thing to share.

I saw other self diagnosed autistics speaking up all the time.

Why couldn’t I?

Because I wasn’t sure who I was. I felt it, but I couldn’t be sure.

Then came the diagnosis.

Now I know who I am.

Will my message change?

Now that I know who I am, or at least, am more confident about it now, will it change what I write or how I write?

Well, I already write about understanding and acceptance (I have a Facebook fanpage and an ebook by that name!) and have always written from my heart, how I’ve always felt and believed… so no, I don’t see how anything would ever change.

I’ve always written as though I had autism anyway, because I try to be as true to my son as I can… pushing for acceptance, community unity… and the good as well as the bad of autism.

My blog will retain it’s title. This is about experiences between a father and son. Always has been, always will be.

My diagnosis cements many of the things I’ve believed, it opens up my eyes in a lot of ways that I’m not sure I could ever truly explain but at the same time… it doesn’t change anything.

I’ve always been me. I have always said and written what I truly want to share.

Will it change how others see me? Treat me? Think of me?

Only time will tell.

Tomorrow:

Part 2 – Getting the Diagnosis.

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The Flood of Water

By on April 21, 2012 in Autism, Special Needs

I’m sitting there doing something when I being to feel I’ve heard the toilet flush about five times in a row. Then I hear my younger son Ned call, “Alex has flooded the toilet!”

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”

“Ned!”

“What?”

“Ned, I need your help!”

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

“Jeff, I’m coming!” says my wife Jill.

“I’m not talking to you! Ned, bring me the dustpans!”

The only bathroom trouble my 13-year-old son Alex has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from Ned. His companion Daniel says he loves looking over the side at the Staten Island Ferry as the waves wash by; maybe it’s the whitecaps rising and fading, or the rushy sound.

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex, who has autism as if one couldn’t guess, ripped the crap out of the car-washing sponge we bought for these floods.

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

“Ned, bring the Swiffer!”

Ned, who’s 11, helps: He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We sent him back in half an hour to put them in the dryer. He gets a laundry lesson, so that’s a plus.

We must look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated.

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The winner for the Determination award goes to…

By on April 20, 2012 in Autism

Cameron Determination

Cameron!

Every month, as part of an effort to raise (or keep up) school spirits, the teachers pick a student from each class/grade who demonstrates the most of that month’s selected character trait to win an award.

Sometimes it’s responsibility, leadership… it’s different each month. This month, it’s determination.

And Cameron deserves this one.

From early on, knowing full well that Cameron’s struggles will likely be much greater than the average person’s, I wanted to instill in him some confidence that would still be there later in life because it’s always been a part of him.

So right from the time when he was capable of answering, I’d ask him “Cameron, what do you do when you fall down?” and he’d answer “You get back up.”

That was when he was 3. That’s still his answer today. He’s almost 7.

The reason that I picked this one thing, this one characteristic for him to hold above all else is that, through determination, he can over come any odds to achieve any other characteristic he may need.

If he wishes to be responsible, his determination can help him achieve that. If he wishes to be a great leader, his determination can help him achieve that.

Determination is the key to not just overcoming his own weaknesses and struggles but it’s also the key to achieving more than those around him.

He’ll be in a world with people that do not have autism nor any other disability and while they may accept him and may work with him… it’s his determination that will allow him to progress beyond that… beyond them… to strive harder than they ever will and to surpass them.

It doesn’t matter what he decides to do with his life… so long as he believes in himself and stays determined… he can do anything.

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The subjective relativity with which we define “normal”

By on April 17, 2012 in Autism

Normal… that peculiar notion of fitting in with those around us. Not with society… but with those around us. In highschool, some people felt it was normal to be with the cool kids, others with the nerds and so on. At work, for me, the designers tend to fit in with other designers more so than programmers and programmers tend to fit in with other programmers better than designers.

For parents, we want our children to be normal in the sense that they feel comfortable fitting in with other children that are good influences. If they tend to fall in with “the wrong crowd”…. then perhaps normal to them is something that we (the parents) won’t be too comfortable with.

For those of us with special needs children, we think of normal in an entirely different context.

Normal is much more abstract than all of that.

Normal is a conflicting array of all that we could ever wish for and the last thing we’d ever want.

not normalWhen our child is born

A funny thing happens when we have a child. I like to call it “their life flashing before your eyes.” They’re born, you flash a glimpse of their entire life… in contrast to when you are dying and you flash a glimpse of your own entire life.

Essentially, we see a fresh new start with limitless possibilities and all of the ways our child’s life can be so much better than our own was.

With that comes a very strong desire for our child to be anything but normal.

We see them standing against the crowd, standing up to bullies, being able to think differently and creatively… all of the wonderful qualities that makes an innovator, trail blazer and leader.

The last thing we want for our child is to be… mediocre… average… normal.

Growing up normal

The whole problem with the dream of bringing a child into the world that will be anything but normal is that we teach them from day one to be exactly that… normal.

Do as your told, eat all your food, say please & thank you, respect your elders and on and on and on… they’re all good things for people to know and do. But without really putting much thought into it, you are setting your child on the path to being normal.

We send our child to day care, school, play dates, the park… all in an effort to make friends like everyone else. To go to birthday parties like everyone else. To just fit in.

Oh, we still want for them to be great… to be smarter than the other kids, to get straight A’s in school and to be the cool kid that others want to hang out with.

But we sort of want them to do it the ‘normal’ way.

Then comes the diagnosis

Chances are, if your child has autism, you knew before the diagnosis that something wasn’t… dare I say it… normal.

But receiving the official word from the doctor is usually the moment that it truly sinks in for us and our notion of just what was and wasn’t normal is completely changed.

It’s pretty much at that point where all of the optimistic dreams of limitless possibilities leave us and we look at our child wishing for exactly the one thing that we didn’t want for them… to be normal.

The talking comes later, if at all, the toilet training comes later, if at all, the friend making comes later, if at all… and each step of the way, you’re thinking “not normal”, “not normal”, “not normal.”

But then…

Hopefully, if we learn how to help our child, where to get help, what works best and what doesn’t and we figure out what our child is truly capable of… we start to realize that all of this time, through all of these dreams and doubts… we got exactly what we wanted.

Our child is not normal.

We wanted it from the start, we dreamt of it and we wished for it… we just didn’t picture it this way.

But that shouldn’t get us down. Our child is beautiful and wonderful and amazing!

We find ourselves taking great appreciation in the nuances of speech, our senses, the patterns around us, the finer details, the strengths and weaknesses in others and ourselves, the world around us and in the power of unconditional love.

Our children continue to grow and show us just how much we’ve been missing in our lives. Just how much we were completely unaware of all around us.

We missed it… because we’re normal.

Our children are not.

Thank goodness.

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Overcoming Self Doubt as an Autism Parent

By on April 13, 2012 in Autism

The hardest part, I think, to being an autism parent is the doubt. Not just in general but the self doubt in particular.

am i good enoughWe ask ourselves

It doesn’t really matter where your child is on the spectrum, we all ask ourselves the same questions.

Am I doing the right thing?
Am I strong enough?
Am I smart enough?
Could I find a way to make more money?
Could I fight harder/smarter to get the services my child needs?
Am I listening to the right people?
Will what I’m doing now, be enough?
Am I making the right choices?

To be fair, these are questions that pretty much all parents ask themselves but it’s just so much more so when your child has autism (or any special needs).

Personally

I’m not supposed to write this… I’m supposed to keep up the illusion of competence. Some people believe that I’m a wonderful father and I have all the answers…

People visit blogs like this for that. They like to be able to relate to the struggles to… but mostly, they look for the positivity. Especially from me. Because it’s what I usually do.

My wife often bugs me about being “the great autismfather” on the internet because I get some great feedback from readers and on social networks but the honest truth is… I have doubts. In the future. In what I’m capable of. In myself.

I know my son is going to turn out great.. because he has greatness in him already. But still, I worry. There is a lot of time between now and when he’s on his own. There is a lot that is going to happen.

It doesn’t matter if someone out there thinks I have all the answers. I don’t.
It doesn’t matter if someone out there thinks that I’m a role model. I’m not.

Right now,  I’m not making much money. I’m not sure what to do about certain behaviors that we just can’t seem to get our son out of. We have sports and other events coming up in the summer that we can’t afford, we’re not sure we could take time away from work for or that our son would even be ready for socially or physically.

Don’t get me wrong, this isn’t a pity post. So please don’t leave comments telling me to keep my head up, or to offer me advice on how to get through it…

I’m sharing this to prove a point. Even if you think someone is a great parent, even if you think they’re a perfect parent… no matter how confident or smart or wise or positive they may seem sometimes… you will still find self doubt. That person will still be asking themselves the exact same questions you may be asking yourself.

When it gets to be too much

The point is, it’s ok. It’s perfectly natural to ask those questions and to doubt yourself. Everyone does it. Some do it more than others but everyone does it.

The problem is when it takes over and moves into the realm of depression. Because then, your self doubt starts to become a self fulfilling prophecy. You will fail where you wouldn’t have otherwise.

For me, and I’ve seen it in others too, when I start to hate myself too much for not being able to do enough… I have a hard time finding the will to do anything. So I don’t. And then I hate myself for that too. And it spirals.

I guess the trick is not to dwell on it. If the self doubt is going to be there, no matter what, then don’t dwell on it. Because when you do, when it’s all you think about, it consumes you.

Either you wake up the next day, shake it off and tackle what ever that day has to offer…. or you don’t.

That’s when your strength, smarts, income, abilities and everything else won’t be what holds you back, it’ll be your self doubt.

Focus on the positives

They say to think happy thoughts and just be proud of yourself for who you are and what you’ve accomplished. I’m not a self help guru so I can’t really put it more eloquently than that. Nor am I very good at dealing with my own self doubt most of the time which definitely makes me one of the least qualified people to guide you through it.

But I will say this… my children are happy. They’re fed. They are wearing clothing.  They are out of the rain. They love me and they are loved too.

I’m not sure how long that will last, because I have self doubt. It’s in my nature to think that I’m not good enough going forward. I’m a parent. An autism parent.

But for what it’s worth… right now… I’ve done better than I thought I would. So maybe I’ll do better in the future than I think I will too.

And I bet, if you have self doubts, you too will find that if you look around and take stock of all that is in your life right now… you’ll find that you haven’t done half bad either.

It’s ok to have self doubts. But it’s also ok to slow down once in a while, keep an open and objective mind and appreciate what you have.

You’ve earned it. You got you there.

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