How We Made Our Vacation Work for Sammy and the Family

Is it truly vacation if we are constantly hovering over Sammy to make sure he doesn’t ruin something that doesn’t belong to us?

Going away is supposed to be an exciting activity for most yet, at the same time, finding the right vacation spot can end up being a big stressor. My family and I know this from experience. We’ve always needed to find vacations that fit the needs of my brother, Sammy, who has autism, while trying to get one that would also be relaxing and fun for everybody else in the family.

What is there to consider? Typically, a location, pricing, activities. But, with Sammy, we also have to consider: safety, bedding, things to keep him occupied, sleeping arrangements, laundry.

You can explain to your kids to keep the place clean and take care of the house or hotel items while you are away. But how do you explain to a person with autism who is not toilet-trained to not have any accidents during vacation? I think this is our hardest thing to overcome while going away for vacations with Sammy. We’re not just packing away for the week – we’re also packing extra sheets, comforters, mattress pads, pillows, etc., in case he does have an accident. And, if he did, what would happen if we aren’t able to wash the couch cushion like we can at home? What if he soaks the mattress and we just can’t get the smell out?

We haven’t been on vacation as a whole family in 10 years as it hasn’t been an easy thing to do. For one thing, there is no “pee safe” vacation. In addition, there is no way to “Sammy-proof” everything in an unknown environment. For example, Sammy loves the ocean. However, he has no awareness of safety – which means he will keep walking deeper and deeper into the water, with no idea of how to swim, or how to deal with harsh waves.

Sammy also doesn’t know how to pick up his messes. So, if he decides he’s hungry and can get to the food, he is going to grab it and shove it in his mouth. All of the crumbs and much of the food end up all over him, the floor, the seat, the bed, and anything else that surrounds him at the time.

Of course you can never truly escape “the real world.” There will always be messes or complications when you are on vacation. However, is it truly vacation if we are constantly hovering over Sammy to make sure he doesn’t ruin  something that doesn’t belong to us? And is he truly on vacation if he isn’t able to “let loose” and do the things he isn’t usually allowed to do at home?

Another concern is usually sleeping. Sammy doesn’t sleep – or if he does, it is during unusual hours, and not for long. In the past, a hotel seemed the safest place because it presents a small environment that we can control. Sammy cannot easily get out because he does not understand the locks on hotel doors. However, by doing this, we all end up being on Sammy’s sleep schedule. No one sleeps unless Sammy sleeps. Why? Because if he is awake, he is humming or playing with toys, or needs the lights on. Not to mention, we worry that he might get into something, or put himself in an unsafe position if we all drifted off to sleep – even if we think we had “Sammyproofed” the hotel room.

So, recently, we found a weekend house on the Chesapeake Bay that we thought would be perfect for our family – including Sammy. I went a few hours early on Friday to “Sammy proof.” This entailed: taking everything that is breakable out of Sammy’s room, writing down everything I took out so I can put it back at the end of the trip, putting anything and everything he might get into (mainly chips and other food items) on the top shelves or in hidden shelves (which is almost futile at this point in our lives because he is almost taller than me), locking up the cabinets and refrigerator, reversing the lock on his bedroom door so there is no chance he will get out and wander during the middle of the night, putting up gates on the deck so he cannot get out without supervision to the pool or bay, and putting room locks on the outside of the doors so he is unable to get into non-Sammy-proofed rooms.

In addition to this, my mom packed plenty of sheets for Sammy. This included: multiple sets of sheets, multiple mattress pads, multiple pillows, multiple blankets, multiple mattress covers, and a few water-proof mattress covers. All of those went on Sammy’s bed at night – and they were replaced at least three times a day because of his accidents. For the bay, she packed enough sheets for a whole family to go away for a few months – and they were all for Sammy. We also chose this house because it included a washer and dryer. So, if there were accidents, we could wash it immediately and not risk ruining the beautiful house’s furniture.

There were accidents during this trip – and these were probably some of his biggest ones. We had planned for this and hoped it wouldn’t happen, so my mom could enjoy her time away. Instead, she spent the first few hours of her morning cleaning, washing, drying, airing out, remaking his bed, and bathing Sammy.

Yet, while Sammy had a few accidents–our prep plan (“Sammy-proofing”) resulted in one of the best vacations we have had in a while. The house was tucked away, so there was no concern of traffic, though we still needed to watch his every move, especially near the bay. He spent hours standing in the shallow end, kicking water and splashing around. He was cracking up and absolutely loved it. Seeing him in the water with a huge smile on his face made me so happy. It’s hard to figure out if Sammy is enjoying himself, or if he is just going along for the ride because he can’t speak up. So when I see him smiling and genuinely having a good time, it truly touches my heart. I’m at peace for a moment and know our family is doing okay – regardless of all the stresses of autism.

I wanted to take him out in a kayak, but we were so afraid that he would “be done with it” and try to get out, or would tip it. Then what would I do? He is bigger than me – there would be no way for us to get back to shore even with life vests. What our family did was to put him in the kayak and pass him back and forth in the water between all of us. I think he thought it was awesome. He was so content to sit there and ride around while he listened to his music.

Overall we had such a great time; we made the vacation work, despite some of Sammy’s accidents. And the clean up and de-Sammy-proofing took hours. We’ve had to do all of the clean up after any regular stay, in addition to putting everything back we had moved, and doing tons of laundry for Sammy’s bed. Things like this; the things we have to do to prepare for a vacation with Sammy, are the things I wish more people knew about autism. Sammy cannot talk, and he is not toilet-trained. It is the over-packing, constant cleaning, and considering things that most families don’t have to do, that makes living with autism a special experience for our family. And this isn’t just a once-in-a-while thing that we experience while on vacation – this takes place every single day. Being with my family for the weekend is always special to me because I live away at school right now and don’t get much time to come home to spend time with them. But having this opportunity to go away after such a long time of going on separate vacations, or having none at all, has meant a lot to me. I loved that we were able to have an “as normal as can be” vacation like other families. I loved that we were somewhat able to relax, following our detailed preparations. We had a beautiful location, and it was definitely a great experience to take my family out of the house and away from all of our daily routines. Even if some of the issues came with us, it was nice not to be in our regular environment.•

SPLISH, SPLASH: When I see Sammy smiling and genuinely having a good time, it truly touches my heart. I’m at peace for a moment and know our family is doing okay – regardless of all the stresses of autism.

SIBLING TIES
Paige Talhelm, 23, lives in the Baltimore area and will begin pursuing her Master’s degree in Education of Autism & Pervasive Disorders at Johns Hopkins this coming fall. She is currently a Director at PALS Programs, an advocate for The Next Step Programs, and leads a support group for siblings of individuals with disabilities. She is the older sister of two brothers, Sammy and Jack. Sammy, 17, has autism, is non-verbal, and is not toilet trained. He is the sole reason for Paige’s push to help individuals with special needs. She hopes to one day create a program for Autism treating adults over 21 with job searching, continuing education, learning life skills, and to increase their  ndependence. Read more about Paige’s life as a sibling of autism on her blog:www.sammyssister.weebly.com