Best Buds

My son and I have always gotten along well, but since this summer we’ve become quite the pals. There were days in the past I would so long for us to have a closer relationship. He went through the normal stages of being closer to Mommy and I was confused as to how to get closer to him. I think maybe for a while I used autism as an excuse for me to not try to enter his world as much as I should have.

“I don’t know how to play with him!” I would say to my wife. “You just have to get in there and try,” she would say. But it always felt kind of like the whole chicken vs. egg debate. Was he not responding to me as much because I wasn’t playing with him a ton? Or was I not playing with him a ton because he didn’t respond to me?

At some point I guess I made a conscious decision to just meet my little boy where he’s at. Instead of focusing so much on the things I thought he couldn’t do, why not pour my energies into the things he CAN do? What a novel concept!

I felt like we as a family were placing so many demands on how he was supposed to act at all times. We couldn’t enjoy a leisurely trip to the park because he doesn’t play with the equipment there the way ‘typical’ kids do. Well, once I made the decision to enjoy the things he enjoys, we all had a lot more fun. Who sets the rules at the park? If he wants to swing for a half hour at a time and is enjoying it, why don’t I just lighten up and enjoy it too?

Our relationship has just grown by leaps and bounds these last few months. I wake up every morning to hear him calling out “Daddy! Daddy!” If I happen to be at work late, he’ll keep calling my name until I come home. He’s always taking me by the hand to go off on an adventure in the house.

I love that little boy so much and I’m so glad I made the decision to not be so uptight and to spend more of my energy having fun, playing, and encouraging him. Does this mean I’m not still striving to help him succeed in life? Hardly. But I think this approach is going to help him more in the long-run by letting him know I accept and love all his unique gifts and talents and will cheer him on regardless of what all the other kids out there are doing.

I Am Autism

A friend just sent me this video produced by Autism Speaks. Very powerful and kind of similar in tone to a blog post my wife wrote a while back. You can watch it below. I promise I’ll actually write a blog post soon that isn’t just somebody else’s video or article. But I guess there’s nothing wrong with showing some videos of hope, is there?

Touchdown!!!

Here’s another inspiring story I just came across about a young man with autism scoring his first touchdown for his school’s football team. I just love reading these!! You can read it at the link below.

Autistic player’s dream comes true as he scores his first touchdown.

Inspiring Video

I just love seeing hopeful videos like this one! My parents recently forwarded me this CBS News story about a young girl with autism who has found her voice through song. I think this one really resonates with me because our little guy is so into music too. Who knows, maybe one day he’ll be singing the national anthem at a game? I have every confidence that he can. The only thing that might hold him back isn’t autism…it’s the fact that our family is not historically known as being great singers!  :)

Check out this story, it’s only a couple of minutes long.

Vote for Us in the Transitions Photo Contest

I need your help! I appreciate those of you who visit this blog even with my not-so-regular posts.  I know this is the lazy route, but I’ve just copied & pasted what my wife wrote recently, so here’s why I need your help….

Josiah has worn glasses since he was two, and they have Transitions lenses. We entered a photo contest sponsored by Transitions lenses to win $10,000, which we would use to help pay for Josiah’s biomedical treatments. They are also giving away $10,000 to the grand prize winner’s chosen charity. Ours would be TACA: Talk About Curing Autism, because they are a parent-led organization that gives grants to families who don’t have the money for treatments and special diets. I think that’s great!

So, here’s what I’m asking you to do:

Go to http://www.transitions.com/liveyourvision/, click on “view entries.” You’ll need to register to vote (it’s lame, but they won’t send you anything if you don’t check the box.) Once you’re in, go to the search box and type in “autism.” Look for the picture of Josiah in the car. We have three of them on there, but thought splitting the vote might actually be a bad thing, so please vote for the car.

Sorry their voting process seems a little clunky, but I appreciate you doing it for us! Also, you could spread the word to your friends on Facebook, etc just by giving them this blog link. Hey, be creative if you like. The contest ends October 15. I’ll let you know if we win! Thanks again, friends.

Walk Now For Autism Preview

I recently did an interview for the station I work at which was a preview of the Minnesota Walk Now For Autism put on by Autism Speaks. The event is on Saturday, September 26th at Canterbury Park in Shakopee, MN for anyone interested. I went last year and was amazed at the turnout. 

Here’s the interview about the walk, autism in general, and Autism Speaks for your viewing pleasure….

Autism Around the World

So I was fortunate enough to do a bit of traveling earlier this month with my sister. We both visited Ireland for the first time and absolutely loved it. Most of our ancestry comes from there and we both just fell in love with the beautiful countryside and the friendly people there. Going there is definitely one of the highlights of my life thus far.

I certainly thought about my son all the time when I was over there. But I really tried hard to not think about autism a ton. I just thought about the normal things you’d miss when you’re not around your child….how cute he is, his little sayings, the things we do together, etc. I’ve learned though that it’s easier said than done to get some time to yourself and not be reminded of autism. I remember going to a Minnesota Vikings game last year and the first thing I heard over the loudspeakers as I approached the Metrodome was that they were collecting donations for an autism charity. The announcer said, “Did you know that 1 out of every 150 children have autism?” I had to laugh and mutter under my breath, “Yeah, I’m aware of that!”

Well wouldn’t you believe it that one of the first things I saw when stepping into the airport in Dublin was a sign about autism!

 

They had several donation points throughout their airport for Irish Autism Action. I was glad to see that apparently this was a charity of the year and that so much awareness was being brought to it. By the looks of it many of the collection points had quite a bit of euro in it so hopefully they’ll raise a lot of money.

I don’t know why it surprised me so much to see autism being mentioned in a foreign country. I guess a person can get so isolated here in the US and think that we’re the only ones dealing with autism. But it affects families regardless of what continent you’re on. From reading a bit on the Irish Autism Action website, it seems like there’s a good awareness and decent services in Ireland. But I’m sure like anywhere, things could be better and a lot probably depends on where you live in the country, just like here in the US.

I must be getting more used to this autism thing though, because a year or two ago, I probably would have had a weird reaction to hearing about autism when I’m trying to ‘relax.’ Nowadays though I just think about how much I love my son and how much I hope more people can be aware of autism.

Autism 151

So in keeping with the positive vibes I was trying to get flowing in my last post, I thought I’d give a shout-out to a website that I think has a great idea.

The website is called Autism 151. Their tagline is “150 Stories. One Community of Hope.” They encourage visitors to the site to upload a short video or a picture to tell the story of someone they love with autism. But the goal isn’t to talk about how hard life is for those with autism or their families. Instead they’re focusing on the positive aspects…the great strides these kids & adults are making….the unique and wonderful qualities they have.

A friend of mine pointed me towards this website and I’ve posted a couple of short videos on there. One is an excerpt of our “Surprised by Autism” show. The other is the video we created for the “What Kind of Word Do You Want?” website. It’s been fun to see over the months how many people have been adding their own touching stories to this website.

So if you have a positive story to tell, visit their website. If you’re in the mood for an uplifting story, head over there. We could all use a dose of what Autism 151 is offering.

Maybe we’re not all that different

I guess I’ve done a REALLY bad job at keeping up with this blog. You probably don’t want to hear excuses, but here’s a few anyway….I’ve been busy, I’m usually sleepy when I have the chance to write one, I can’t think of any ideas, etc.

Actually the last excuse is not all that far off. I’ve been kind of struggling lately to figure out the purpose of this blog. Does it exist for me to offer pearls of wisdom? Hope for other parents? A place for me to vent? A forum to tell cute and/or funny stories?

I suppose this blog can serve any of those purposes. I just can’t seem to figure out what direction I should keep this thing going in. I don’t want it to just be a forum for me to spout off if I’ve had a bad day. I’m sure there’s plenty other blogs where you can read that type of thing. I also fear that someday our son will read these writings and I don’t want him to ever think that he made our lives difficult or anything. It’s quite the opposite. He’s such a beautiful blessing. So Josiah if you’re reading this in the year 2021 or something, please know that you’re the best thing that has ever happened to me.

Ok, so now that we’ve cleared some of that up, I thought a good post for today would be to talk about something that’s been on my mind a lot lately. It’s how our 3 year old son with autism really isn’t all that much different than a 3 year old without autism.

It’s so easy to put every one of Josiah’s actions under a microscope and just assume every behavior is a result of autism. Maybe he’ll throw a short tantrum about something or we just get the feeling he’s not listening to us. Time and time again though we’ll share stories of what he’s doing with other family members and they’ll usually say, “You know, you used to do the same things at his age too. That’s what all 3 year olds do.”

Since he’s our only child it’s easy to forget that 3 year olds sometimes do things that make us parents scratch our heads. I was in Target with our son a few months ago and he threw a bit of a tantrum and kept laying on the floor making it difficult to pick him up. I felt like all eyes were on me and that everyone must think I’m a bad parent and everyone must see all his autistic behaviors. Now that time has passed I realize that if people were looking at us, all they saw was a 3 year old being a 3 year old who didn’t care to shop at Target anymore. I doubt they were passing judgment down on me either. If they’ve had a kid that age, they probably just thought, “Hey man, I’ve been there before!”

There are so many things about Josiah’s life that I could list now that aren’t really any different than a ‘typical’ 3 year old. He loves ice cream. He never leaves his stuffed duck or special blanket out of his sight. He loves going to the park and could spend all day on the swings and slides. He loves music. He gets a kick out of Elmo. He lights up when his Mommy or Daddy are in the room. He likes to look at pictures of monkeys. He likes to hear his Grandparents voices on the phone. He loves to splash around in the bath. He likes to get wet in the sprinklers on a hot day. He likes to have a song or two sung to him before bedtime. He would prefer a donut to something more nutritious for breakfast.

Ok, you get the point. So much of what we deal with is really what any boy his age would be into. Sure there are some lapses in vocabulary, imagination, etc. But we’re seeing progress all the time in those areas. Sometimes the progress may not be as swift as we thought it would be, but it’s steady progress nonetheless. I for one, am trying my hardest to focus on all the wonderful qualities my son has. I could live my life right now thinking about all the things other parents are doing with their kids. But you know what, with just a few differences here and there, we are getting to do those things with Josiah. We’re all unique and have quirks. Why is it ok for me to have my quirks (and believe me I do!) and not for our kids with autism to have them? Sure, we need to help them to grow. But I worry that we’re all losing sight of the big picture that these kids have a lot to give right now.

So maybe that’s more of the direction this blog needs to take. More positivity. More pointing out what my child and other kids with autism are doing. They don’t need our pity. I don’t need your pity. All we need is some good vibes and I think we’ll all be just fine.

Life lessons learned while playing Mario Kart at 2 am

The title of this post pretty much sums it all up right now. We’ve been putting off assembling Josiah’s new toddler bed because it just seemed like a lot of work. A lot of work to put it together (the box said ‘easy assembly’ but it’s never easy when I’m involved), a lot of work to disassemble the old crib, and a lot of work to see if Josiah will actually sleep in the new bed.

Well, thanks to some help from my Dad, we got the bed assembled yesterday and decided tonight was the night to try it out.

Since I’m writing this post at almost 2:30 in the morning, you can guess how well it’s going! Josiah got really mad tonight when he saw the bed in his room. He eventually fell asleep on my wife’s lap and we put him in the bed. He slept for a good 2 and a half hours and then woke up in a really foul mood around 10:30 pm. He’s been up ever since.  Why we didn’t debut the new bed on a Friday when we wouldn’t have to work for a few days and could afford to lose some sleep is beyond me now. Guess we should have thought of that.

So after tossing & turning a bit, listening to some podcasts, and contemplating how my life has reached the zany state it’s at now, I decided to head downstairs with a book, my iPod, and my Mario Kart wheel. I still haven’t touched the book or iPod since I’ve been in the basement, but it seemed like as good a time as any to take the old Mario Kart for a spin again.

As I sped & crashed around the turns, it dawned on me how much this addictive little game is mirroring my life lately. You see, when I play Mario Kart, I rarely feel like a winner. Sure, sometimes I’m in first place at various points, but inevitably something comes along to trip me up and I find myself in last place trying desperately to catch up.

I might be leading the pack and suddenly a turtle shell is thrown at me, knocking me off course. Kind of like how one minute I’m excited thinking Josiah is making great progress with a certain area, and then the shell comes in the form of him being up all night.

Sometimes while driving, you have an octopus splatter ink all over the screen while you’re driving so you can’t see anything. That’s how I feel when I can’t see if what we’re doing are the right things. Are we utilizing all the services we should be?

Or I’m driving my Kart when a cloud and lightning bolt hit me, sending my Kart twirling to the back of the pack where I suddenly am struggling again. That’s how I felt last week when during a pretty good day at work, I found out my insurance is going to be a different carrier come July 1st and I now have to struggle with the state & the insurance companies to make sure my little son can get the help he so desperately needs. If I can’t get this all figured out, I honestly don’t know what we’ll do. I feel like I’ve just driven my Kart into the hot lava of the Grumble Volcano and I’m just waiting around for an angel to lift me back into the race.

And there are those times when I’m feeling confident, tall, and driving with purpose. Suddenly the big ‘boom’ box shows up on the screen and reduces my driver to just a little miniature version of himself. That’s how I feel every time I think we have something figured out with Josiah’s eating or overall health and then without any warning, we find ourselves feeling shrunken.

I often feel like the other drivers on the track are the other parents of ‘typical’ children we know. They seem to be able to drive around without anything bad happening to them while I’m constantly in peril. I know that I can’t see everything and they are likely getting hit with turtle shells when I’m somewhere else, but man it really feels lately like no matter how hard I try, I’m always crossing the finish line last. How I’d love to just get that first place trophy. I’d prefer it in real life, but honestly at this point I’d consider it a major victory if I could just win at Mario Kart again.

Hopefully these analogies are making some sort of sense. It is almost 2:40 now after all so I might be a little loopy. But it does sound like Josiah may finally be asleep, so perhaps I have a chance tonight in this race after all. At least until someone tries to run me over again!