So I stopped writing this blog in 2017. I was reaching a difficult part of my life, the realization that certain dreams were not going to come true, and that caring for Dayna was not going to get easier. In fact, it was getting harder, much harder. So now in January of 2019 what has changed? Nothing…….absolutely nothing, except maybe the purpose of Autism Challenges as a blog.
I wish I could say things have gotten better. There are good aspects of our life, we are still very happy with the move to Raleigh, NC. Kiley and Sean both attend great schools that fit their personalities and skills perfectly. And we still have each other as a family. But all of the struggles are still there at the same level, if not worse. Dayna is more challenging than in the past. Now approaching 19, we still have to care for her like a toddler. Maybe an older toddler than before, but Dayna still lacks the understanding of a child more than half her age. Cable outages can not be fixed by screaming ‘FIX IT’, but she will still scream non-stop. Holidays can’t be in the next couple of days just because you want them to be, you have to wait. If it’s January, you can’t yell for Christmas no matter how many times you ask what day it is. And trips to Denny’s cost money, unfortunately right now the way things are we just don’t have it to spend every time she asks. She doesn’t understand, and then things spiral out of control.
I think I started to blame the blog for everything that was going wrong. I started this more than halfway through 2014, and soon after it seemed like life just kept throwing hurdles at us. BIG HURDLES. A lot revolved around Dayna, but not all. My heart attack for example. It was soon after I started the blog. Soon after it happened I left my sales position while recovering, and that led to an unstable period with me trying to find a job that allowed me to have the flexibility for our challenges with Dayna, and yet still be able to provide for the entire family. Unfortunately, that has not worked out very well. Since the heart attack there have been job changes and lots of lost income. With lost income comes struggle, anxiety and depression. When you are already dealing with the stress and sleep deprivation that comes along with caring for a child with severe autism, adding anxiety and depression wears you down very fast.
So why start the blog again? Is it because things are looking up? Is it because Dayna is making huge strides and I got a promotion? Nope…and nope. Its because for one, obviously writing about our challenges probably wasn’t making it worse for me after all. In fact it was most likely helping me vent and express my feelings more. And secondly, its because I came to realize a new reason to write the blog. You see, when I started writing I wanted to give people without children with autism a view into our life. I wanted them to see what it was like raising a child with autism and all of the challenges that came with it. I was never sure if I succeeded in that, it was hard to tell if people understood the unique nuances of raising Dayna beyond the obvious. However I did notice that other parents of children with autism, as well as those raising children with other special needs, did get it. They would frequently comment on how they understood and were going through the same thing. It’s because of them why I have decided to start writing again.
Here’s what happened to get me finally going again. Recently we have been having a particularly hard time with Dayna. It happens in spurts, some days are much worse than others. One day as she was having a meltdown and I was getting burnt out, I Googled “losing my mind raising a child with autism.” I thought maybe someone could relate. One of the links was to another blog by a parent overseas. It was by a mom that obviously was having a very bad day, one that undoubtedly she had experienced many times before. It spoke to me. Almost everything she said was exactly how Deb and I feel. I found it very comforting that someone else felt the same way I did. I then remembered those comments from autism parents on my old blog posts, and how they would remark about how much they could relate. For that reason, I have decided to write once again. This time, for the other parents of children with autism so they can know they are not alone. And for those that do not have the same challenges, or maybe don’t even have children at all? Well, I’m still writing for you as well and hope you will be able to learn something and have a greater understanding of what families like ours go though.
I suggest you read the post that helped me get back in front of the keyboard. It is by ‘faithmummy’, and its called “I Don’t Want To Be An Autism Parent Anymore”, the author literally could not have said it better when it comes to those days when you think you can’t go on.
Thanks for reading, thanks for coming back! I’ll write more again soon!