Deb has been gone with Kiley and Sean since Saturday. That left Dayna and I at home, and multiple days for me to sit and think about things…..everything. All in all, it has been a pretty uneventful weekend. But my mind has been racing the entire time, more so by the time Monday hit than any other point. This will be a challenging blog for me….I’ve had a couple other posts in the hopper, some I may decide to post tonight after I finish this. But this one is coming off the top of my head, and somewhat cluttered. I’ve been thinking about a lot during the past couple days. I said I would write this blog to give an insight into raising a child with autism…why not give some insight of what is going on inside the head of a parent with a child with autism? And hell….if you know me, getting a view inside my sometimes warped mind would be a good post in all kinds of blogs, like one called “The Quiet Extrovert” or another called “Why to avoid those with an Irish temper”.
I digress….which is why it’s hard to get things down in writing sometimes. This weekend my mind has been working like it always does, in 10 directions at once. But being alone with Dayna frankly is like being alone, and I’ve been able to track some of those thoughts. I’ve enjoyed spending time alone with her, I really have. But it does leave a lot of quiet time to contemplate the past, present and future. The last one, the future, can get scary.
I usually try and put some structure to these posts….this time I’m following a different format. I’m a Bruce Hornsby fan. Now, some of you are thinking of the 80’s piano guy with a couple of pop hits. I’m talking about the guy who also played a ton of shows with the Grateful Dead. He has a cool format to his concerts….no playlist, people write songs they want on scrap paper and he picks them up and plays them. Over the past couple of days I’ve been writing some thoughts down on whatever I could find. So now following his format it’s just me, a laptop and some pieces of paper….
The first one says “the good what if and bad what if”….that one came to me while I was in the shower. Don’t try and picture it, trust me. But I often find myself thinking about the ‘What if’ scenarios. On the good side….what if I made enough money that I could make sure Dayna was secure for life? What if I could start a business? One that would allow me to work in my own community, be able to provide a place where Deb and I could both work, and even better give Dayna a place to work when she is out of school? A business I could leave Kiley and Sean to continue on? A business that we could help employ adults with autism? I always think of the perfect scenario like that. Sometimes they are not that elaborate….what if we were able to get Dayna into a private school that she wanted to attend? What if she would be able to talk more? What if I could come up with something to help her communicate better? Then there is always the infamous….what if I won the lottery? Here’s one ‘what if’ that isn’t worth thinking about….what if Dayna’s autism went away? Even I know I have a better chance of winning the lottery. Which then makes my mind switch to the bad ‘what if’ scenarios. What if something happens to me? What if I have another heart attack? What if something happens to Deb? What if we never have a retirement, or have any money to care for Dayna? Those ‘what ifs’ keep me up at night, keep me nervous, keep me motivated, keep me on blood pressure meds. The worst thing about having a special needs child isn’t what happens in the present, it’s not knowing what will happen to your child when they are an adult and you’re no longer around. ‘What if I made enough money that I could make sure Dayna was secure for life?’ often gets drowned out by “What if I leave my daughter with nothing to live on?’, and its scary as hell. I’ll get to more of that later.
Here’s another note….“Work”. Man, that has been on my mind for a long time, and for some reason even more so the past couple of weeks. I’ve been in technology for 20 years. I’ve always been good at it, but I can’t honestly say I like it. I’m an IT Director….other than about 5 years in sales recently I have been the IT management guy. It’s the technology equivalent to a complaint department. I mean think about it, if you are reading this, you are doing so on a computer. Look at who made that computer or provided it to you. How many times have you called them to say it was working well for you? Now..think of how many times you have called or complained to someone you know when something on that computer doesn’t work. That’s my world, all complaints….and why does it matter? Well, for one it’s a job that takes time away from the family, and adds stress. But more importantly, it’s not something I really like to do. I’m good at it, but I really don’t want this plastic box on my lap to be my legacy. I like people, I like being with people and presenting in front of them. IT management does not have much of that. However, it pays the bills well and that’s the thing. I always watch stories about people following their dreams. I have to be realistic and can’t take those chances. Deb and I both have to do whatever is needed for Dayna, as I mentioned before, but not necessarily what is needed for us. I made the decision after my heart attack last fall to leave technology sales, because going back to running the IT department for a company would mean steady pay and steady benefits. But I gave up lots of family time, lots of flexibility to attend Dayna’s meetings, and lots of energy. The truth is I miss sales, but don’t think I have the ability to take the risks when I’m in sales anymore, or maybe I’m just too gun shy. So now I have to deal with the fact that I can’t be around like I used to be. This blog is about what is on my mind….and what’s on my mind is that I really don’t know what to do anymore.
Next piece of paper…“Vacation”. This is a funny weekend. Deb, Kiley and Sean are in Florida, my sisters and my brother are in Puerto Rico, and my neighbors are in Vegas. As a couple, we can’t go to any of those places together anymore. Actually, we can’t go anywhere anymore for more than a night. Travelling is a real challenge, this year more than most. Yea….trust me, it sucks. Deb and I have not have had more than one night away together in years. Those who are on our Facebook pages see the time we enjoy out locally, but that’s because we make the most out of it. It’s hard to never get anywhere together alone. It’s even harder together as a family, other than the shore in the summer. Those two weeks at the shore are important to us. We look forward to Wildwood because it’s the one place that is within driving distance that won’t upset Dayna, and she knows it so well that for the most part she is ok with being there. I stress for 50 weeks of the year to figure out how to pay for those two weeks, but it’s our way of giving Kiley and Sean, and ourselves, a vacation we enjoy. We don’t get to go anywhere else. We don’t get to go on planes, or to amusement parks, or overseas. Luckily we like the beach and if the kids can’t get to experience different places at least they can spend an extended time at the Jersey Shore at a place we look forward to. I don’t know when Deb and I will ever get time away together for ourselves, but we like to think about it, or dream about it. Maybe we will do so on my 50th birthday….oh wait, that brings me to another scrap of paper……
“The future”….Dayna as an adult, retirement and what’s next. Dateline had a story last week that spoke about the fact that when a child turns 21, they are basically released from the state’s educational system. Their support systems stop, and then the families take over. Dayna will turn 21 a couple months after my 50th birthday. We will need to have a place for her to go, to live, to work. She will most likely be with us, and we will be struggling for services for her, this we know. People talk about group homes for Dayna and how Deb and I need to think about ourselves. Well, I keep trying to picture it and I just can’t do it. I can’t imagine how I would feel if I found out someone did something to her. I need to be able to provide for her, and 5-6 years is not far away. I was thinking of places to retire someday, and then realized that isn’t going to happen. If I do retire, we will live where Dayna is settled in. We won’t move her, and we won’t move away from her. Sometimes I think we should move now or know that this is where we will be for the rest of our lives. Either way, the future is not clear and wont be for a long time….if ever.
“Dreamland”. I mentioned Bruce Hornsby earlier. He has song called Dreamland, I caught myself listening to it a few times this weekend. I always felt it spoke to me about Dayna. I’ll end this blog on the last verse of the song…
Gonna cherish my time with you
Gonna smile, smile the whole day through
Wake up tomorrow maybe you’ll find
Darkness gone from your mind
Want you to be what you want to be
Don’t want you ever hurt like me
Smiling through the saddest times
Could only happens in dreams….. I wonder is it nice as it seems?
2 thoughts on “What goes through my mind when there is time to think…..”
Just a thought…what if your own business could be the type of group home you would want for Dayna or other children with autism? One that would provide ongoing education, support, and therapy for it’s residents and employs the most patient, caring staff you can find? People would pay for that, and if you made Deb CEO, you could possibly qualify for grants and other subsidies as a woman owned business. You would still be in Operations, but at least doing something that you are passionate about…
I think its a great idea….not sure how we would pull it off though! We don’t have the experience running a business like that. We tried years ago to start a program for early learning and realized how hard it would be, primarily with funding. What I would love to do is be on the board of a business like that, or work with a larger established organization to start a program like that.