We are often asked about how our other children handle day to day life with Dayna’s Autism. Dayna is our oldest at 16 (almost 17), her sister Kiley is 14 and her brother Sean is 7. Neither Kiley or Sean personally have any effects of Autism, but they do deal with the challenges nonetheless. Here are three of the big ones:
Friends coming over and sleep overs – lets start with something simple. All kids like to have friends over. But that’s never been simple for us as a family. What we consider normal daily routine may not be for another child who comes over, so we always need to explain things. For instance, for us it is completely normal to suddenly see Dayna come bounding into the room wearing only a diaper, or worse, nothing at all. Maybe she has just come out of the bath, or maybe she has decided to tell us she wants a bath in a very ‘direct’ way. Now to Deb and I, that just means one of us corrals Dayna into her room while the other starts the bath. To Kiley and Sean, its status quo, they just keep doing whatever they were doing and don’t think much about it other than the occasional ‘DAYNA!’ when she catches them off guard. In Sean’s case though, another 7 year old friend may not understand what is going on, and for them seeing a 16 year old come streaking into the room would most likely be quite a sight. In Kiley’s case, at her age that can be very embarrassing if a friend saw it. A few years back during a Super Bowl party, Kiley had friends up in her room (girls and boys) when Dayna suddenly came in wearing no clothes, and decided to lay across her bed. Very embarrassing for Kiley, kind of funny for us on the surface, but truthfully also somewhat heartbreaking for us as well. The same can be said about Dayna’s meltdowns. Just tonight Dayna had an episode of suddenly crying loudly, which is accompanied by her jumping up and down in the middle of the room, without the ability to explain why she was upset. A short while later, I determined it was because the one cable channel she likes, Baby First TV, was not working on the TV upstairs. Then, while I was trying to troubleshoot it she was continually yelling ‘FIX!, FIX!, FIX!’. The jumping up and down crying of a 16 year old, the yelling to fix something out of my control, even the watching of toddler videos is all very hard to explain to another child. Yes, it can be done, and maybe its a good thing to do so. But this is about the siblings, and sometimes those siblings just want to play with a friend, be a kid, and not have to deal with it all.
Travel and vacations – For us, and many others, this is very difficult. Dayna does not always travel well. When it comes to long drives, we have determined exactly how to pull them off….immediate stop to Burger King, Kids Place Live on the satellite radio at all times, Grandma’s blue blanket, and if possible Dayna gets the 3rd row seat to herself. However, the drive has to be limited to a few hours max. No 8-12 hour drives, multiple day drives, etc. That means we are limited by a radius from our home. During those drives, there may be times that Dayna gets upset. She may want something she can not have, we may be in a tunnel where XM Radio is not working, or she may be unhappy with sitting in traffic. The result is usually a tantrum in the car. These are things we deal with in the car and are used to, and I list them for one reason….to also explain why we don’t fly. You may not have met Dayna, but just from reading my blog you can imagine the struggle we would have if we were ever stuck for hours in an airport, or worse, on a cramped airplane. Just like the cable channel not working, or being in traffic, she has a hard time understanding why things are not happening and this results in anger and frustration for her. ‘Daddy fix’ or ‘Go home?’ is what she wants and that’s it, and she will repeat it over and over. Dayna also often needs a little help in the bathroom, and rarely shuts the door….try pulling that off on packed 737 heading south. How does all this effect her siblings?….Kiley and Sean have never been able to go to Disney World, or out west, or overseas, or on a cruise. It’s just not a possibility for us. What we were able to do for a while was take a two week extended vacation to the Jersey Shore. That was our compromise, and gift to them. Two weeks in a row really makes a difference, the kids loved it and for Dayna it was always at the same place so she was very comfortable. Two weeks also meant we weren’t dealing with the hard transition for Dayna just days apart. But unfortunately that’s when times were good, and I could afford the time off and the cost as well. That has come to an end for now, which brings me to another effect on the siblings….watching Mom and Dad struggle emotionally and financially.
Jobs, finances and the constant struggle – this is one area that the other kids probably don’t talk about, or don’t realize. Kiley is old enough now to understand things and probably wishes she didn’t, Sean is shielded by his young age and doesn’t always comprehend what is happening. As Dayna has grown older, some aspects of caring for her have become easier, but others have become more challenging and draining. One of the challenges for me personally is that I also have become older. I mean…I’m not OLD, but I definitely struggle now keeping up. I’m writing this yet again at 3am because just before 2am Dayna was standing in the middle of the family room yelling ‘MOMMY!…..DADDY!’ (also a reason for no sleepovers!). She’s back in bed now, but I’m up, and you all get a blog post as a result. In all seriousness, this will come back and bite me tomorrow, and it will hurt. I’ve written about this in the past, I’m wide awake now but I will feel much worse in 12 hours when I need to be awake on a day that was important. Over the past few years, this constant up and down of sleep, the continual monitoring of where Dayna is and what she is doing, the struggle of making sure her routine is just correct and the non-stop worrying of what will happen in the future has taken it’s toll. The kids can see some of that, I am sure. Kiley has lived through her father suffering two heart attacks. Financially we have taken a huge hit and have lost a lot in recent years. Retirement is not something I even think about anymore, its just not an option for me and I’m not sure it ever will be. I work hard to hide the effects from Kiley and Sean, to provide them as much as I can in return for dealing with everything. But behind the scenes it can be like holding up a mountain. As I said, Kiley is old enough to understand, eventually Sean will grow old enough to see it and understand it as well. When it comes to the ways Dayna’s Autism has effected her siblings, this is the one I hate to see the most.
So when I try to explain how Autism effects Dayna’s siblings, I guess the answer is that it can range from them seeing their 16 year old sister come skipping into the family room naked to seeing their parents put on a brave face while they struggle to keep things afloat.
Come to think of it, maybe I’ll stick with my normal canned response…..”Eh, they’re used to it”