Archive for June, 2008

Taking one for the team

June 21, 2008

We’ve been interested in starting my son on MB12 shots for quite a while. He’s been taking B12 drops for several months, but a lot of the research we’ve been doing seems to point to the shots as being the most effective form of administering B12.

So we went through the process of getting a prescription for the shots. At the doctor appointment for this, I figured our son would get a shot that day; we would be able to learn how to do the shots; and then we would get a prescription that we could bring to our local pharmacy.

Well, as with most things these days, it wasn’t that easy. They didn’t actually give him a shot. Turns out too that you have to have the B12 compounded at a special pharmacy which is then mailed to you. As the appointment was drawing to a close I asked, “So….where do we give him the shot? In the butt?”

The doctor realized he needed to show us how to give the shots but all he had was an empty syringe that he demonstrated on a latex glove. Surprisingly that doesn’t give you much confidence to actually give it on your own to a toddler who will likely squirm and resist more than an inanimate object.

Our syringes eventually arrived in the mail and we were ready to inject away. The night before we were going to start giving our son the shots, my wife went online and viewed some videos about how to give the shots correctly. I could tell she was fairly nervous about being the one to give him the shot. As I went to sleep that night I thought, “Hmmmm. Too bad she doesn’t have someone to practice a shot on.” Then it occurred to me, “Wait a second! I have a butt! She can practice on me!”

I was going to tell her my idea that night, but figured for some reason she wouldn’t go for it. The next morning rolled around and I saw my wife was still apprehensive about being the shot-giver. So I just kind of lazily threw out my idea about her giving a shot to me so she could practice and I could tell her if it hurt at all.

I kind of expected her to nix the idea and say that she didn’t want to waste a syringe. But to my surprise, her eyes lit up and she said, “That’s a great idea!”

Suddenly this didn’t seem like such a good idea to me anymore! I thought she wouldn’t go for it but would be impressed by my willingness to ‘take one for the team.’ But now the reality was that I had talked her into giving me a needle into my precious buttocks.

I decided to take the tactic that any kid would take. I stalled. I spent a good 5 or 10 minutes going to the bathroom. Oh, and I better freshen up a bit too. Finally my wife had enough of my procrastinating and she came running after me with the needle. This was not how I envisioned my morning going!

I eventually relented, pulled down my pants and sprawled across the bed. A few seconds later, I had a fresh helping of MB12 in my rear and my wife felt confident on how to give these shots. It really didn’t hurt that bad (it’s a pretty small needle) and I did feel good knowing I helped out a bit.

So I guess sometimes you do have to take one for the team. But if anyone ever needs an enema, I’ll tell you right now you’ll have to find another butt to practice on.

Days of Our Lives

June 12, 2008

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.

Not the role I auditioned for

June 9, 2008

Back in the day during my brief acting ‘career’ I was fortunate to land most of the roles I wanted. Whether it was a small role in the first play I tried out for or a leading turn in one of my last, I usually fell into what I hoped for. Of course it didn’t hurt that sometimes there weren’t enough guys trying out for the roles, but that doesn’t make this story sound so sexy.

So I figured fatherhood would be similar to some of these plays. I’d try out for the role of ‘Dad,’ I’d get the part, and I would carry out the scenes. Well somewhere along the way someone changed the script on me and I fear I’ll never learn the lines.

Just when I think I’m starting to get a handle on being the ‘autistic dad’ I get thrown some serious curveballs. It only seems like days ago that my wife wrote a great post about how we were turning the corner and the veil of autism seemed to be lifting. Then came the last few days. How can I describe them succinctly for you? Well there were lots of tantrums, breakdowns, and hair pulling. Josiah had a rough weekend too.

I think I had a good two nervous breakdowns on Saturday alone. It’s funny how it just takes a few things going wrong all at once and suddenly the world comes crashing back down to reality. In between some regressions/spaciness/whatever-you-want-to-call-it from my son, I had some opportunities to see just how I’m falling short in pretty much everything in my life these days.

First off I made the mistake of trying to assemble a wagon by myself. My wife and I had agreed that I would go to Toys ‘R Us, purchase a wagon for our son, and spend the extra $10 for them to assemble it. Well, the clerk there assured me that pretty much any idiot could assemble this thing and not to waste my extra money for him to do it for me. So I took his advice, and about 90 minutes later after starting it, I had indeed put the wagon together, and nearly destroyed myself in the process. I got so pissed at that stupid wagon…nothing seemed to fit the way it was supposed to and I kept hammering my $@!%#!# thumb. I wanted to just chuck that wagon down the driveway and utter some unmentionables. But since there were plenty of neighbors out, I decided to go inside and keep my cool. So I go inside to find my son still up when he was supposed to be napping…he was cranky and as is his choice lately, he was not eating the expensive organic/natural food we buy for him.

Eventually I calmed down somehow and in the end our son did nap, he ate at least one chicken nugget at some point, and the wagon didn’t fall apart the first time we used it. Later that day we went to the park which was also fairly disastrous. Our son cried most of the time there and all I got to do was watch all the other parents with their normal children having a blast as we packed it up to go home (in the wagon though!).

Then I got to mow the lawn and see what a crappy ‘green thumb’ I am. Let’s the put the mower back in the garage…oh great I can see the car is leaking something. Well I can bring it in on Monday morning on the way to our son’s eye doctor appointment….oh yeah, he’ll have to wear his back-up pair there as the good ones are broken and will take a few weeks to get fixed.

Seriously, there are some days where I just wonder how much more I can take. Just when I start seeing a light at the end of the tunnel, we end up taking several steps back. Every day my heart breaks more and I just feel like someone is continually punching me in the gut.

Like I said earlier, I thought I had auditioned for and won the part of the dad who got to do all the things I dreamed of doing some day with my child. I couldn’t wait to throw a ball together, chase each other around the park, have all sorts of adventures together. For the most part I’ve yet to experience any of those things. But I get to see every other family on my block living that dream. Oh, there’s the couple with the 2.5 kids we dreamed of having and they don’t have to deal with autism! Hey look over there…there’s the family having a barbecue with other families on the block! Guess our invite got lost in the mail. Perhaps because we’ve taken the mantle of being the weird family on the block now.

I don’t think anyone who doesn’t have a kid with special needs realizes how hard it is to see ‘normal’ families. Everywhere I turn whether it’s at the park, at church, or just looking out the friggin window I see people getting to do what I wish I could do. How did they get into this play I so badly wanted a part in and I’m shut out? Is it something I did or said? Did I show up late or unprepared to auditions? Does the director have some kind of vendetta against me? I would take the smallest role in this play if I could just have what they have. I’m not asking for much…I don’t expect this role to make me wealthy or famous. I just want to not have to sit by daily and watch my son suffer. Well, I suppose he doesn’t seem to be suffering too much. He often has a huge smile on his face and is pretty oblivious to his condition. But I’m the one who has to suffer and worry about what life will be like for him. How will we get all his toxins out? How the hell did he get that crap in him in the first place? Will he be able to go to school someday and make friends? The questions are limitless and they taunt me day and night. I feel like all these worries are being shouted at me like hecklers from the balcony of this theatre.

I do get to work on my acting skills all day long though. When the few friends I have left these days or people I come across ask me how I’m doing I summon those skills I learned in theatre and give my best smile and say something like, “Things are going great!” You may say I should just learn to be honest, but I learned pretty quickly when I got this part, that people don’t want to hear how you’re really doing. People love to believe that you’re some kind of strong person who’s going to set the world on fire and cure autism or something, when inside I die a slow painful death every day and am hurting more than I ever have in my life. My soul is screaming out for relief, but I just fake the smile and let the world pass me by.

Well, one thing I guess I can say is that this play I’ve managed to get myself into isn’t dull. Far from it. I was hoping to be cast in a lighthearted family comedy but it seems like I’ve unknowingly wandered onto the set of some kind of Greek tragedy.

Hopefully, someday I’ll look back at posts like this and laugh. Maybe then I’ll be cast in the role I thought I was going for. And I guess if this is where I’m meant to be, maybe I can shake some things up in the future and invest in a codpiece or some cool tights for this tragedy. At least I can look the part while doing this.

The Game of His Life

June 2, 2008

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.