I’m sure all of you have this marked and circled on your calendars, but my birthday is quickly approaching. I’m getting to the age where I’m finding there’s not much I need for my birthday anymore. Although if you were planning on buying me an iPhone or something, feel free to proceed as planned. Long gone are the days where I had a huge list of things I wanted for presents and you eventually hit a certain age where you can pretty much eat anywhere you want anytime you want, so it’s not as big a deal to go to a certain restaurant for your special day. I would love to go to the Bump ‘n Tilt though. That’s a North Dakota reference for those scratching their heads right now. It was THE place to have your birthday party when I was a lad. All the videogames and bumper cars you could play for one price all afternoon plus frozen Cokes.
Anyway….as I age, I find I value the little things more. For a day like my birthday, just getting to spend some extra time with my family or share some laughs at work is enough.
Yesterday something happened that I believe is the best early birthday present a guy could ask for.
When I went to pick up my son from his therapy center yesterday they were excited to tell me a story. They said a few minutes after I dropped Josiah off earlier that day, he started to get sad. They figured he wanted a certain toy or maybe was hungry or something. So they asked him what he wanted. He said, ‘Dad.’
For many of you reading this that might just sound like a cute story but nothing overly remarkable. But for the parent of a child with autism, that’s pure gold. We are so fortunate that our little guy is verbal, but calling us by the names ‘Dad’ or ‘Mom’ is something that really doesn’t ever happen. He did use those words a bit before he was 18 months when we noticed him regress into autism, but ever since it’s been few and far between.
Most days it doesn’t even dawn on me that I don’t get called ‘Dad.’ I’m just happy we’re making the progress we are and that he does use a lot of words. But I’ll have to admit I see other kids running up to their parents and saying ‘Daddy!’ and I start hurting inside a bit.
It was the perfect day for this to happen too (and not just because my birthday is approaching). I had kind of a crappy day yesterday before I picked him up. Nothing too serious…just tired and feeling a bit down. But to get the news I did sure gave me a huge boost.
So when my birthday comes around next week, I really don’t need anything else (although if you already bought me something you might as well still give it to me and I will happily accept it!). Just knowing that my little guy said my name and also was missing me is present enough.
As hard as I’ve tried throughout my life, I just can’t seem to get away from the soap opera ”Days of Our Lives.” It all started back in high school when some friends of mine introduced me to it. At first I couldn’t stand it, but then I found myself getting sucked in when I would watch it in the break room of my department store summer job.
I definitely couldn’t shake “Days” during college as pretty much everyone watched it over lunch in the lounge areas. Once I graduated and entered the real world, I thought my days with the fictional town of Salem were long gone, but “Days” was a constant during lunch at my current job (which is funny because I work mainly with guys and we all needed our daily “Days” fix).
It seemed like everyone had their favorite characters. The girls all liked the hunky guy characters whether it was Bo or John Black (with his patented ’smell the fart’ style of acting). Us guys were supposed to like one of the hot gals or at least one of the more macho guys. For some reason the guy I always rooted for was Abe Carver, Commander of the Salem Police Department (played by actor James Reynolds).
I don’t know why I was drawn to Abe. I think it was because he’s one of those underdog characters that has been on the show forever, never really got the good story lines, and was generally a good guy. Plus he’s got an impeccably groomed mustache.
My friends and I even decided to all write to our favorite actors to see if we could get some pictures to decorate our office walls. I wrote to James “Abe” Reynolds and eventually received an autographed picture. If I can dig it up I’ll scan it and post it here.
So where am I going with all of this? Well I thought I had finally parted ways with “Days” for good as I haven’t watched it for a few years now. Oh sure, from time to time I wonder what kind of shenanigans the gang from Salem are up to these days, but I’ve managed to give up “Days” without too many withdrawals.
I recently learned though that beginning on June 24th, “Days” will unveil a storyline where Abe and his wife on the show Lexie will begin to learn that their 3-year-old son Theo has autism. The head writer of the show has a child with autism and this inspired her to create a storyline involving autism. She worked closely with Autism Speaks to tell this story with as much respect as possible. You can read more about it here.
This should be really interesting to see how they handle this. Perhaps it will help families who have concerns that their child isn’t developing normally. Or it might just help educate those who don’t know much about autism.
So I guess I’ll be taping “Days” again. I don’t know that I’ll totally get sucked back in again though. I’ll just fast-foward to the parts with Abe. I always knew I picked a good character to root for.
I just finished reading a great book called “The Game of My Life”by Jason McElwain. You may not recognize the name, but you’ve probably seen his story before. Jason is the young man who a couple of years ago made 6 three-pointers in a high school basketball game. That doesn’t sound that out of the ordinary, right? Well, Jason has autism and this was the only varsity game he ever played in. He served as the team manager doing things like getting water, etc. For the team’s last regular season game, he was allowed to play and entered the game with about 4 minutes to play. To say he made the most of those 4 minutes, would be a huge understatement. In case you haven’t seen his story or have forgotten, here’s a look at one of the stories on Jason that made the rounds a couple of years ago.
I remember seeing that story when it first came out and thinking it was very inspirational, but I had little understanding of what autism was. Fast forward to a couple years later….our precious little boy is diagnosed with autism and I suddenly remember that story about the kid making all those 3 pointers. Jason’s story took on a whole different significance for me in an instant.
Jason now has a book out where he talks about that big game and what it’s been like growing up autistic. Interspersed throughout the book are thoughts from his parents, his brother, coaches, and teammates. Jason’s writing is quite a freewheeling, stream-of-consciousness style which makes it all the more effective. This isn’t a polished memoir. You really get to know what life is like for this autistic teen.
It’s so remarkable to see how far he’s come in life given that he was diagnosed with severe autism as a young child. He certainly wasn’t given a prognosis for a bright future, but as you’ll read in the book, his parents never gave up on him. What impressed me most about Jason after reading this book wasn’t the fact that he made a bunch of baskets in a game, but rather that he was more concerned about his teammates ’staying focused’ during the ensuing play-off run that he didn’t play in after his big game.
In a world where autistic children are constantly being told what they won’t be able to do…it’s refreshing to read a first-hand account from someone who never stopped dreaming.
No, I haven’t fallen off the face of the earth. My wife and I just returned from the recent Autism One Conference in Chicago. What a great experience this was for us.
It was almost overwhelming to be in a place where we were surrounded by fellow parents of autistic children…to be in a room with others who know exactly how we’re feeling and what it feels like to deal with the early days following the diagnosis.
My mind is still trying to process everything we learned and experienced there so I’m sure I’ll do some follow-up posts later, but here are a few highlights…
The Jenny McCarthy keynote speech was incredible. She was very inspiring and I like how she just kind of tells it like it is. At the end of her speech, they showed a trailer for an upcoming documentary that she’s involved with. I seem to recall at the end of the trailer they showed a website for her film, but at the moment I’m not having success recalling the website or finding it through google.
We went to a social they held one of the nights where we had the opportunity to chat with parents who are members of TACA which is a group that helps parents of autistic children. We were able to chat with people who have kids that are recovered or are recovering. There is no one-size-fits-all scenario when it comes to the different treatments you can do, but it was still good to hear that so many people are having success using the biomedical approach. Sometimes you hear stories of almost instantaneous recovery, but most of the parents told us it’s a slow and steady road, but that if you keep with it, you might be amazed how far your child will go.
I could list all the amazing sessions we sat through by some of the top doctors and minds that are trying to change the course of autism, but the names probably don’t mean much to anyone not affected by autism. I can just say that it was affirming to know that much is being learned about autism.
It was interesting to hear one of the speakers say that 10 years ago he used to go to autism conferences and it looked like a bunch of zombies were walking around…no one had any reason to be hopeful. But this speaker said that this year’s conference in particular was a revelation to him as he saw so many people walking around excited and that there was a real sense of hope and optimism in the air.
After sitting through the sessions and talking with other parents, I feel confident that we’re on the right track with our son. It’s going to take time, but I have a feeling that there are much brighter days ahead for us…and for countless other families that are in a similar situation.
It was also just a great chance for my wife and I to get away together for a few days. Many thanks to Grandma and ‘Pa for watching our little guy. It didn’t take long though (I’d say we were only gone for about 10 minutes or so) before we started wondering what our little guy was up to. It was sure nice to see his adorable little smiling face when we got back.
I don’t know where the time has gone.
It seems like only yesterday that we were planning for your arrival.
I worried so much about my abilities to take care of you.
Could I change a diaper? Could I hold you correctly? Could I calm you when you were sad?
It’s as if I’ve blinked and now you’re a beautiful little boy.
Curlyhaired, dimpled cheeks, the bluest of blue eyes.
A two-and-a-half year old free spirit who has captured my heart.
I feel like I’ve failed you.
I told you I would protect you and keep you safe.
But even with all my best efforts, you were diagnosed with autism.
How did this happen?
Was it the vaccines?
I had a sinking feeling every time you were immunized that this could be a mistake.
I may not have done the best job of protecting you then, but I will give every last ounce I have to helping you heal and recover.
I certainly do not love you any less because of your autism, but because I love you so much, I will fight for you.
Therapy, biomedical treatments…whatever it takes.
The world may tell me to cope with autism, but I will instead hope for a better life for you.
I will not let autism define your life.
You will choose your own path in life.
Autism will not choose it for you.
Whatever job you desire, relationships you seek, will be your choice, not the choice of autism.
I have never loved anyone in this world the way I love you and because of that it is my duty and honor to do all I can for you.
From the moment you were born I knew our little family was destined for greatness together.
Let our journey to your recovery be our finest hour.
We will show the world that we will not let autism take over our lives.
Someday you won’t always be so little.
But you’ll always be my beautiful son.
So today is World Autism Day. It’s been interesting to see all the news stories today. CNN is devoting a lot of coverage today to autism. It looks like you can view a lot of those stories right on the CNN website.
I used to think I was only noticing so many stories on autism because we are now dealing with it. Sort of like when you buy a new car…suddenly you notice lots of other people driving that same type of car where before you may have never noticed it.
But I have to think that people are noticing that there are so many reports on autism these days whether it’s stories about the vaccines or the rising numbers of those being diagnosed, etc.
I did in fact buy a “1in150″ shirt that I mentioned in a previous post and am wearing it today. It really is quite a nice conversation starter. People say “1 in 150 what?” And then I bombard them with more statistics and my thoughts on vaccines and all that is wrong with society. Just kidding of course. It does open up a nice dialogue though about how there are so many kids being diagnosed with autism and mine is one of them.
We enjoyed the 2nd part of our 4 part series for newly diagnosed families last night. There’s something comforting about being around other parents who are in similar situations. Not that I’m happy they have to go through it too, but at least we know we’re not alone. It amazes me how different each case of autism is. It’s not like other disorders and diseases where you pretty much know what you’re dealing with. One person may be dealing with a kid who can’t stop stimming on something while for another family the big issue is tantrums. It does help to get some hints from parents who have kids older than ours and who have lived to talk about it.
Wouldn’t it be nice if on World Autism Day next year we’re talking about being closer to finding a cure? Or that the numbers are now like 1 in 10,000? You never know.
Ok, so one more link to add. I’ve been hearing a lot lately about the HBO documentary called “Autism: The Musical.” It premiered on HBO this past Tuesday evening and I thought I wouldn’t be able to see it since we only get like 10 channels at home. But the HBO website is streaming the entire documentary on their website through Sunday. You can watch it here.
In a nutshell, it’s a 90 minute documentary about a group called The Miracle Project that puts on a musical starring a number of autistic kids. You get to view the behind the scenes workings of the musical as well as a glimpse into the lives of these families. I’m sure any family of an autistic child will be able to relate to the highs and lows these families are going through. I’m a big fan of documentaries anyway, and this one was quite well done. If you have the time, I think you’ll enjoy it.
If you want to learn more about the documentary itself, check out the official website for it.
I was originally going to write about our experiences traveling home for Easter, but my wife has already done a superb job with this, so I thought I’d pass along some interesting autism-related links that I’ve come across lately. Perhaps that’s what I should just do from now on…let my wife write the good stuff and I’ll just link to it! She has a lot more patience to really sit and carefully craft her blog entries, while I get a little squirmy and can’t think too far ahead. Which is strange, because I write for a living, but I’m usually reporting on a topic, not doing this stream-of-consciousness thing that this blog requires.
I’ll definitely echo the sentiments my wife wrote about in her post. I actually suggested that on the way back from visiting family, that we not even stop in a restaurant. What’s the point if all 3 of us are stressed out. So we grabbed some food and sat in our car in the parking lot of a Home Depot to eat. Nothing fancy, but we all ate without incident, so that was a victory I’d say. As I ate, I also got to watch some guy in another guy devour a giant bowl of what looked to be chili. That was just a bonus.
Part of the reason for starting this blog was to hopefully connect with others who have kids with autism. My wife has met with a couple of other moms in the past few months, but I’ve yet to really have a meaningful discussion with anyone who has a kid on the spectrum. This past Tuesday we attended the first night of a 4-week series for parents of asd kids. It was a good experience. Even though we knew a lot of the information already, there were still some nuggets we took away from it. Actually I took literal and figurative nuggets away that night in that I ate some chicken mcnuggets on the way there. Word of advice…those are much harder to eat while driving than a hamburger.
But I digress….I’m looking forward to the remaining sessions and hearing of success stories and resources available in our community.
So some interesting things I’ve read this week include this op-ed piece from the Bismarck Tribune that was about vaccinations. I know it’s all the rage to talk about those these days and while I don’t understand a lot of it, I thought this was a good argument.
Another interesting piece was this article from the Chicago Tribune about biomedical treatments. We’re in the midst of this stuff and it was encouraging to read that it can pay off dividends over the long haul.
And finally I am looking forward to spending each day of April (which is Autism Awareness Month) with this prayer calendar from Children of Destiny. They’re calling this “Turning the Tide.” There’s a short thing to pray about each day regarding autism including ‘Healing for Broken Bodies,’ ‘Insurance & Expenses,’ etc.
So there’s today’s batch of links. Can’t believe March is almost over. Seems like there’s a never-ending list of things to do and now April brings more pressure as I have two fantasy baseball titles to defend!
Don’t know if I’ll post again before Easter, so I thought I’d take the opportunity to wish anyone reading this a Happy Easter!
Today I had the chance to eat something called a ‘hamdog.’ It’s a 1/4 pound hot dog wrapped in cheese, then wrapped in a 1/2 pound hamburger. It’s put into a hoagie bun and topped with chili, cheese, and onions. I didn’t quite finish mine. I’m not quite sure what to think of it. I guess my only advice would be to not eat one if you’re going to be spending anytime in close proximity to anyone else for several hours afterwards. I feel sorry for anyone who has had to come into my office today.
Not sure what the ‘hamdog’ has to do with Easter or autism. I guess I was drawing a blank for what to write today and this is the best I could come up with.
Easter does get me thinking about hope though. This is a season of rebirth and after the year we’ve had I definitely would welcome some more things to feel hopeful about. I could go on more about hope, but my wife did a great job in her latest posting, so I’ll just leave it at that.
Just got an e-mail from the National Autism Association that from Tuesday through Friday of this week you can get 20% off of anything in their online store. If you’ve just been dying to have some autism-related merchandise, this might be your chance!
I’m particularly into the ‘1 in 150′ long sleeved shirt they have. I think that one would be a great conversation starter. I have a shirt that I sometimes wear that just says ‘relevant’ on it. Nobody ever knows what it means (it’s a magazine) so when I’m asked about it I usually first tell them that I decided not to wear my ‘irrelevant’ shirt that day.
I knew the current 1 in 150 autism stats before I started this blog, but I think it was seeing that shirt that made me think I should use that as the name for this blog. Hopefully through more research, we can decrease the numbers of kids being affected by autism. I’d love to someday have the number be something like 1 in 10,000. Then this blog could serve as a relic to a time when 1 in 150 were being diagnosed. Sadly though the rate things are going it may very well go in the other direction and be something like 1 in 50 before we know it.
Anyway…the sale at the National Autism Associaton’s online store runs frm March 18-21. All you have to do is enter “SUS08″ during checkout and you get 20% off. I haven’t looked at everything they have but there’s a wide variety of clothing, magnets, etc.
