I always wonder what the best approach to take is for my blog. Do I talk about autism, since that consumes my world and is the reason for this site? Do I talk about running, since I’ve done a lot of that and have a background and training regimen that’s a lot different than most runners out there? Or do I just talk about how my alma mater, Kansas State, beat Oklahoma on Saturday?
Well, I think the running stuff is boring. Nobody really cares about how hard I hit hills or when I foam roll. And as much as I could go on and on about K-State, that’s what the site I linked to is for. So, I’m going to talk about autism. I don’t have anything specific or deep to talk about, so I’m just going to make this like a journal entry. Today’s journal entry will be about how autism impacted me yesterday.
Just in case you’ve never been here before, my 9-year-old son Jack is severely autistic. Not really talking, still in diapers, all sorts of problems. I didn’t want his struggles to go for nothing, so I started a foundation in his name and ran 61 marathons in 2010 to try to raise money and awareness for a charity I’m a part of called Train 4 Autism. Now, I just keep heading down the path I’m on, no clue where I’m going, still doing whatever I can to help Jack and other kids out there with autism.
Anyways, my diary entry.
How Autism Sucked Today
Today, autism started to suck at 4:30 a.m., the moment Jack woke me up. He decided 7.5 hours of sleep was enough and started turning on lights, looking for his iPad. I stayed with him in his room and tried to get him to go back to sleep, but that didn’t happen. A little before 6 a.m., something upset him (no clue what) and he started the self-injurious behaviors he’s been doing a lot of lately.
First, he started with rapid-fire punches to his own head. I stopped them pretty quickly and he only landed a couple, but he then started kicking his feet together pretty hard and started crying. My wife Tiffany heard him and came into the room, not knowing I was in there. She thought I was out running, but as has been the case a lot lately, I skipped it to take care of him.
She took over, but I didn’t go back to sleep. I was up for good. But tired. The rest of the morning was fairly uneventful and I got ready for work. Tiff was crying and talking to me. She was extremely upset, sobbing, “This isn’t right! He could have been somebody’s husband! He could have been somebody’s dad!”
She’s right, because those are two things that he almost certainly won’t ever be, but I always try to focus on the path we’re on, not the path we could have been on. He was pretty calm the rest of the morning and I went to work. We’re dealing with some issues for Jack and I’m waiting for some emails. I keep an eye on my phone and saw one I wasn’t expecting. Tiff immediately made a call that lasted 90 minutes and told me to call her for five minutes when I could.
Five minutes turned into 20 and I was getting frustrated. I felt like she was repeating the same thing over and over. But I listened and eventually told her I had to get back to work. I kept checking my email, but never saw what I was waiting for. I’m pretty concerned about that, but I’m pretty concerned about a lot of things.
Tiff started texting me some more about these same issues involving Jack — she’s very concerned and very upset. We kept going around and around in circles and finally I told her “ok ok ok ok” because I just wanted to move on with the conversation. Apparently, that ended the conversation.
After work, I was going to go to the gym because I didn’t exercise in the morning. Normally, Tiff doesn’t mind. I called her up, but we were talking about these issues with Jack some more. I sat in the parking lot at my work talking to her, but after 7 minutes, I just decided to start driving home. This conversation wasn’t ending and it was more important than going to the gym. Eventually she told me it was OK to go, but I was already on my way home. Oh well, not that big of a deal. But what’s one day? Thanks, though, autism.
I ate my dinner when I got home and then Jack started getting upset and slamming his iPad into his head. I sat with him and tried to restrain him and calm him down. It wasn’t much use. I was able to keep him from punching himself and I got him in his padded helmet, but he started kicking. Eventually, he got up and stomped his heel right into my left big toe. He didn’t mean to hurt me, but man … he sure did.
Tiff and I started up with the conversation again about these imminent issues we have because of Jack’s autism. It turned into an argument. It moved from the playroom to the front porch to the kitchen. I started reading some documents, but then stopped. I’m sick of this subject. It’s all we’ve been talking about for the past few days. I feel heartless for saying that, but my goodness, there has to be more to life than this.
We were still arguing a little bit about this when we went upstairs to put the kids to bed, but we got over it and came to an agreement. I put Ava to bed and then was in Ben’s room for a bit while Tiff was trying to get Jack down to sleep, about 16 hours after the day began.
She finally came out and started sobbing uncontrollably, explaining to me how afraid she is for Jack and the way he’s been harming himself so much lately. We both try our best to stop it, but it happens so quick and he’s getting so strong. She’s afraid that one day, he’s going to hit his head into concrete out of nowhere and kill himself. It sounds dramatic, but she has a point.
We’re slaves to him. He can’t be left unattended. She’s more overprotective of him than I can possibly explain, but that’s because he’s a non-verbal 9-year-old who injures himself every day. He’s our baby and he wasn’t born this way and he doesn’t deserve this. So, she’s very protective of him and emotional about it. I’m numb to the pain and just try my best to fight for all of us.
By 9 p.m., we were down on the couch relaxing and hoping Jack wouldn’t wake up. Tiff vegged to some Real Housewives show and I wrote a blog before making a root beer float and calling it a night.
Just another day in the books. Typical. That’s how autism sucked today. Hopefully tomorrow is better. But I’m not holding my breath.
On the bright side, Jack got his hair cut yesterday. Isn’t he cute? Too bad he has that self-inflicted bruise on his forehead. Poor little guy.
Marybeth Wells says
Hi Sam! I met you in LA during summer of 2010. I was with my friends Marilyn and Sondra..
Sondra has a teen-age son Luke that has autism.
I saw that you ran a race in Pocatello, Idaho recently- I live only 4 hours west of there.
I am so sorry to learn of your pain and struggle with Jack but I was a special ed teacher and worked at an institution also. I want to share 2 things with you…I wish you could bring Jack to Idaho… Provencia Digestive Health- Stephanie Kennedy in Meridian- she has done a lot of work with children with autism…it is one of her passions..she even worked with the school district with kids with autism and other behavior disorders.
Also- I have felt a leading of the Lord to learn about essential oils – and there is a tool that seems perfect for kids with autism – it is not invasive- it has a handle cradle – they just put their hand on it but it can see what systems in the body is out of order and can make recommendations as to what products are needed to restore balance..it is perfect for those individuals that cannot tell us where it hurts…it is called a zyto compass. You can look it up on line- I know a lady here that has one…I work with her with doTerra essential oils…there are blends of essential oils that may help Jack- blends that are calming…no side effects…please contact me by e-mail and we can talk more …if this is of interest to you…I think there is another race coming up in Boise too if you want to combine a trip…I think it is called Colors????
Blessing you with some peace and calm in your home..
Marybeth Wells!
Alicia says
This. Exactly. Your blog always resonates with me, but this summarized the past few months of my life. I hate feeling that way, but my GOD this is sucking the life out of me one painful minute at a time.
Alicia says
I’m sick of this subject. It’s all we’ve been talking about for the past few days. I feel heartless for saying that, but my goodness, there has to be more to life than this. (no idea why it didn’t show my quote. grrr)