Just over three years ago I started to write this blog. For the past three months though, I have struggled to write again. Recently, I’ve quietly decided to put an end to AutismChallenges.com.
As I started to write this last entry, I looked back at my second post….A Week in the Life of Autism. It was like I was writing about this week. I wrote about Dayna being up at 4am, last night she was up at 3:15am. I wrote about having to have a certain breakfast for her. I wrote “I prepare ‘breakfast’…..3 pancakes, a bowl of Oreo’s, and lemonade in the same red sippy cup.”. Guess what, that remains the same also. The cup has changed to a red cup with a straw, and sometimes the Oreo’s get swapped for a honey bun, but it’s the same process. I also wrote that it was the first week of school, and her starting to fight it with repeating “No School!”. As you may know if you have followed this blog, that has remained the same for three years now and happened this week as well.
As I look through my old posts, or stories as they were, it’s like the movie Groundhog Day. So much of our life is the same, more than I even thought. It becomes a huge source of frustration for me. Not sleeping, fighting school, bad habits and behaviors….not only have things not improved, they have become harder. Dayna is now older and more difficult to handle at times. But if you have been following the blog, you already know this, because that is so much of what I have written about over the past three years.
When I go back and look at the comments on social media and the blog itself I see a lot of commonalities between the posts as well. So many kind comments, so many words of support. I really can’t thank you enough for the support. I was always very appreciated, and well needed. I also realize some would have preferred that more of the posts were positive, as I would have as well. I think it would have been great to have been able to write about the progress we had made in areas, but the truth is I had to write about our life and the challenges we faced. The harsh reality was that it was rarely positive. There are so many days when Deb and I have said the words “this is not a life” out of frustration. It was frustrating not to be able to come up with good stories to write. Finally, there was another group of comments I noticed….those from other parents and families that struggle with a child with autism. Comments about how they had the same problems, comments about how they felt exactly the same. They knew the struggles, they understood the struggles, and it made me feel like we weren’t alone. Seeing those comments helped me tremendously.
So why bring it to an end? It’s something that I started to think about a few months back. I thought 2016 was hard, but this spring was an even harder time for me, probably the hardest I have ever had, and I’m a guy who has suffered two heart attacks. Here we were in North Carolina, very happy to be here, and Sean and Kiley had both been admitted to great schools for this fall. We were settled into our new home, and getting to know the area. In some ways things were looking up, but personally I was hitting rock bottom. After 23 years in technology, I had taken a job that left me feeling like I knew nothing at all. I struggled to keep my head above water and felt confused and old. I was stressed and constantly in a horrible mood, snapping at my family at each turn. I didn’t feel well physically. I was still dealing with things back in Maryland with our old home that seemed to be endless. I was struggling to stay afloat and I was forced to seek help from family and friends, and each time I had to ask I felt like more of a failure. And most of all, I was trying to start over and yet I was worn down and tired. Very, very tired. Candidly, dark thoughts would creep into my mind and I would find it hard to get through the day. Yet all of these feelings I would hide the minute I walked out the front door. That’s just who I am in person even when asked. Too proud to admit anything is wrong, and dumb enough to just smile and keep it to myself.
Things had to change and I knew it. I was fortunate to get a job offer from a former employer that I never should have left in the first place, and accepted. I decided it was time to hunker down in our life raising Dayna, not temporarily, but for the long haul. Because I had to come to the realization that it’s going to be a long haul no matter what. No miracle was going to happen, no lottery was going to be won, no magical solution was going to appear. Reading back through the blog helped me realize that. However it also made me realize that things were never going to be the way we wished. I couldn’t continue to sit in self pity, I couldn’t continue to dwell on things out of my control. I had to come to realize the fact things were never going to get easy. I had to realize that I’m going to be tired, and I’m going to have nights where I don’t get sleep. Things had to change in the way I handled things. When Dayna gets up at night I now use that time to get work done. I use my part time job as a way to release frustration and stress, I enjoy it a lot and it doesn’t hurt that it also brings in extra money. I try to take a deep breath and not get so stressed when Dayna has outbursts of bad behavior, especially in the middle of the night. I’m not always successful, but I’m really trying. Most importantly I had to start feeling better and stop dwelling on all of the challenges we face raising Dayna. And a that meant I had to stop writing about and reminding myself about those challenges. Things had to change, and this writing this blog was one of those things.
To everyone who has read my posts, thank you so much. For all the positive comments, thoughts and prayers, I can’t thank you enough. To the other families raising a child with autism, hang in there!
This is my last post, but I will leave the entire site up as long as I can do so. If you just stumbled on this site for the first time….Hi, I’m Dan. Some call me Pat. I have a daughter with autism. Start with the post on August 24, 2014 and enjoy the ride.
From me and the rest of the Wilson family….one last Thank You.