Growing up, I had a special needs brother that made vacations different.This is something about me most of you didn’t know, because it’s something I rarely talk about. For the longest time, I was ashamed. I never had a sense of normalcy in anything we did as a family, because my brother’s needs always trumped mine and my younger sister’s.
Anytime we planned a vacation as a family, there was this expectation that things would be picture perfect and enjoyable. In reality, while we had a good time, it wasn’t everything it should have been: relaxing. Our plans very much hinged on my brother, which built in me a deep hatred of him–even though now I realize some of it he can’t help. As a young kid though, you don’t understand why your sibling gets more attention than you and why our vacation has to be done differently because of him.
It’s really hard having a special needs sibling. When you live with someone that is special needs, you are living a life of self-sacrifice, whether you want to or not. Everything you do is dependent upon their needs above your own, which can make family vacations a bit challenging.
Vacations with him were planning out everything months in advance and not telling him until the day of because he wouldn’t stop asking questions for weeks. It meant that we had to pick vacation spots that weren’t going to be filled with tons of people because otherwise he would have a meltdown from from being in sensory overload. It looked like not being able to eat normally because he has severe food allergies and would get upset if we ate something different than him. It would mean constantly having to watch him outside anywhere because he doesn’t sweat and could go into a seizure at any moment from that or strobe lights. It was sacrificing our own enjoyment for the sake of his because he needed us all the time.
Over the years, I have grown to understand more about the complexities of special needs that I didn’t understand before. While there were some things that my brother would do on purpose to irritate my sister and I, a lot of it he couldn’t help. It honestly wasn’t until a few years ago that I fully realized the extent of it.
If you can, imagine for a moment what it’s like living with a 5 or 6 year old. Now imagine the attitude, actions, and thoughts of that 5 or 6 year old being present in a grown adult that is 22 years old. That is what it is like living with someone with special needs. You get constant questions, they want constant attention, and they also need help with basic things like brushing their teeth and getting ready for the day. They can’t drive, and probably never will, and you are the person they rely on most. They follow you around while they ask questions, distracting you from the tasks you need to complete. You try hard to keep them entertained long enough for you to do the things you need, but it doesn’t last.
When you go on vacation, you just want to have a good time and to relax. With a special needs sibling, I rarely got that luxury because my brother always wanted or needed something and the rest of us had to adjust around him. Maybe you’re sitting there thinking “how could you feel like that?”, but to be frank, you won’t understand unless you’ve lived it. It’s really difficult for everyone, vacations are especially hard with a kid with special needs, because they need routine.
When on vacation, their routine is different and it makes them out of sorts. Sometimes even violent, which completely ruins your hopes of a relaxing vacation. When your special needs sibling is so violently upset because their routine changed, they don’t know how to handle the change which makes it harder for the family–especially when you’re supposed to be on “vacation”. It put a strain on our whole family, but especially my parents. Honestly, we wouldn’t be where we are today without the faithfulness and provision of God. While everything was more difficult for us, God sustained us and gave us what we needed to make it all work. My parents are pillars of faith, because having a kid with special needs is impossible for parents to manage outside of God. While the journey is long and hard, God sustained us and showed us that even though my bother has special needs that are hard to deal with, he is still one of God’s children and God takes delight in him, and so should we.
This is the reality of going on vacation with someone who has special needs. It is no easy feat and everyone is involved. Your life, whether you like it or not, revolves around your special needs sibling.
Fast forward to today, as my family and I are preparing to go on our first vacation without my brother. While things are going to be very different, I am very thankful for all vacationing with someone with special needs has taught me and how it has shaped me into who I am today. I am also very excited to experience for the first time what it’s like to go on a “normal” family vacation without the worry that tends to surround going with my brother. In some ways it feels selfish, but in a lot of ways there’s relief. We know that he is living with people who care for him and will take care of him and he is safe. We are relieved that we get to vacation together and experience the freedom of getting to actually relax and do things we enjoy.
This post was a hard one for me to write, as it’s a part of my story that I’ve never really told. But hey, maybe in some ways today you were encouraged. And I hope that maybe you can say “me too” and know that you aren’t alone if you live with someone with special needs too. I pray one day you–and your family–get to experience a “normal” vacation too.