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”

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2 thoughts on “Autism and the effects on the siblings

  1. Hey PatDan,
    I am again conducting my lesson on disability awareness and my class used your blog for today’s activity. Each student chose a different post to summarize, share, and discuss “ah ha” moments. The activity generated a few questions that I wanted to pass along to have you answer.
    1) How basic are your family meals? What do you do at mealtime for Dayna?
    2) How often do Dayna’s younger siblings have to take charge of Dayna?
    3) How difficult was it to find a doctor for Dayna when you moved to NC?
    4) Have you found any tricks that help Dayna sleep?

    We miss seeing you all out and about! I hope all is well and thanks again for giving such powerful insight into your world. It is a great tool for my students to gain the “whole” picture knowledge needed to work with students with disabilities.

    Heather Semies

    PS……….I didn’t realize how prepared I was for this lesson until I found myself quoting facts from previous blogs and I knew what each blog they had chosen was about. I read every single post!

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    1. Hi Heather! It’s so cool that your students are reading the blog! Keep the questions coming!

      1. How basic are your family meals? What do you do at mealtime for Dayna?

      a. Family meals are hard for all of us. Dayna does not like to eat when there is other food on the table that she does not like, and there are a lot of foods she does not like. Sometimes she won’t even come in the kitchen. For instance, Dayna hates to see lunchmeat out like ham or bologna. So the answer is most times we eat and then Dayna eats later. In our house the kitchen is right next to the family room, and both are very open so many times although she is eating on her own she is still around us, she just prefers to eat at the table by herself. As far as the meal goes, Dayna likes very specific things and has a menu on the refrigerator that she points to. It helps to get her to tell us what she wants. Typically, it is chicken strips, pizza or pasta. And always with lemonade! Trips out to restaurants are becoming more and more rare as Dayna fights us on going out anywhere.

      2. How often do Dayna’s younger siblings have to take charge of Dayna?

      a. At this point, they do not take charge that often. Dayna’s younger brother is only 7, so he doesn’t necessarily take charge but he will tell us if she is getting into something. Dayna’s younger sister is now 14 and is just starting to watch her for short periods of times. This just recently started. Dayna is a bit bigger than her sister and in the past she would get upset if we weren’t around. One time a couple of years ago, we decided to let Dayna’s sister keep an eye on her while my wife left to pick up her brother. However, it was a 20 minute ride to get her brother and there ended up being traffic that made the trip much longer. I was on my way home from work and was still one hour away. Dayna’s sister was stuck trying to calm Dayna down who was upset that we weren’t home. She would not listen to her sister and increasingly got upset. She was eventually screaming at her sister for ‘Mommy Daddy’. Needless to say we did not attempt that again until recently, and that is only for short periods of 10-20 minutes max.

      3. How difficult was it to find a doctor for Dayna when you moved to NC?

      a. One of the reasons we moved to North Carolina was to live in what is referred to as the ‘Research Triangle’. It is an area made up of 3 schools and cities: NC State in Raleigh, Duke in Durham and UNC in Chapel Hill. UNC has the Carolina Institute for Developmental Disabilities as well as the TEACCH Autism Program. Duke has the Duke Center for Autism and Brain Development. As a result there are many doctors and facilities in the area equipped to help Dayna. Dayna also was admitted to the Murdoch Development Center, a state run in-patient program that helped resolve some major issues we had been having for a couple of years. We were only in NC for 4 months when she was admitted.

      4. Have you found any tricks that help Dayna sleep?

      a. Well, first and foremost the Murdoch Center as well as her Neurologist were able to tune into a group of medications she takes each night. She takes 5 prescription medications plus a Melatonin. That has helped tremendously. But there were other things we had to do as well. When she returned from Murdoch her room was much different. Before she had a TV with cable and full on demand, as well as a DVD player and VCR. She also had a laptop and iPAD in her room. Now her room has no more electronics, no more TV, no more laptop. The room is meant for sleep only, other than a small sound machine in the corner that makes ocean sounds. We also keep the temperature low with the air conditioner at night. Finally, we have to follow a very specific routine. Medications have to be at 8pm, by 9pm she likes to start calming down by sitting on the couch upstairs and watching TV. If you mess with that schedule, there is a very good chance she will start not sleeping through the night until we get her back on track. Routine is key….and the subject of my next blog post!

      Thanks! Dan

      Like

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