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Holidays - by Thomas Kuzma

7 April 2017

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Hey guys it's Thomas Kuzma here, Happy World Awareness Months! I thought with school holidays upon us, you all would like to hear a conversation on autism and taking holidays!

Well I'm sorry that I don't run a podcast, however you can READ the conversation below.

I speak with my good friend Kylie Ouvier, a lovely month of 2 sons on the spectrum. You may have seen her kids, Ben and Nathan in the different brilliant video here.

Let's get down to it!

Kylie: If you’re a parent of someone on the spectrum, sometimes it can be quite easy to take your kids on a holiday. But sometimes problems can occur if you are taking them to see cousins or more distant family. It’s difficult for them because you don’t see them that often, so they don’t always understand some of their subtle cues.

For instance, I was at a relative’s place for the holidays and I wanted Ben and his brother to come into town with me, because the previous day the kids had stayed at home with my aunt and uncle whilst I was out. I found out they had acted up whilst I was away and I thought it was unfair on my auntie and uncle to have them there for another day. The problem was Ben didn’t want to come.

Eventually he agreed to come with us, but he was angry and decided to slam the door which made my uncle mad. Which is understandable, however I knew that Ben wouldn’t be able to apologise because he was in a specific state of mind and had become unresponsive. It’s not that he is rude, but when he is in that state of mind, he finds it very difficult to respond appropriately.

Now he came with me into town and walked around in the shops but when we got back Ben just wanted to stay in the car all day. It was too hard for him to come out and apologise to my uncle.

Thomas: Its funny I had such a relaxing and predictable world when I was younger

But to add to your story, this sounds like some of the meltdowns I have had. Growing up I was given the talk where having tantrums or meltdowns was not allowed whilst out with cousins. However when I got older I had a harder time socialising with certain cousins. Don’t get me wrong, I love them all dearly but I also need my space.

A couple of Christmases ago I went down to Batemans Bay to meet with the family and there was many a time where I felt like I needed a few moments away from everyone. I ended up taking a break on my iPad inside the house whilst everyone else was socialising outside.

One night I was in bed trying to sleep when two of the cousins mentioned in another room that I was ‘making myself at home’. That wasn’t my intent, however when you have everyone socialising at once, your feel like your mind is running into overtime. I ended up sounding rude when I asked how long we were staying for, when the only thing that I was concerned about was that I wanted to know how much time I could spend with the cousins.

Kylie: I completely understand what you are going through. Sometimes you just feel like an ineffective parent, because you can’t make your kids meet the expectations of society and that can include the expectations of your own family.

My mother says “I understand” but then she does things that shows me she doesn’t. So, I feel like she says things just to placate me. I have had so many people say that I am the problem.

The diagnosis found me and my children and as a parent I feel that it is up to me to make sure that my children get the help they need to reach their fullest potential.

The kids can’t help who they are. It’s up to us as parents to help others understand that this is not made up, this is real and we don’t need the judgement of others placed on our kids or ourselves.

Thomas: These same expectations are seen as an adult wherever we go. I won’t talk about “the bubble” conversation again, but I will reiterate that it can be hard to fit in when you are on the spectrum. If you make a mistake it can be very hard to get back on top. It is good to remember that it isn’t always bad.

I had two holidays on my own to Brisbane. The first time was horrible, I felt like a Springfieldian in Shelbyville. I felt like I got all the social cues wrong, I was unhappy with where I was working and the whole time I was away and it was all just a series of bad luck . The place I stayed at was wonderful though!

The second time I was a bit hesitant, however I structured out my days very well. My employer was a lot more flexible, and let me have a little bit of extra time off, I found out I had more friends up there and planned where I would go to eat.

Kylie: How good is it to know you have somewhere the kids love? For my kids it’s White Water World. Every time we go to see the family up in Queensland, we always visit WWW. They love the slides and they both love water. In the middle there is this big playground with a huge bucket of water and it just dunks this massive amount of water! Nathan loves it and always runs straight under it. It must be a sensory thing.

Thomas: I wish I could take holidays, I’m too busy trying to build up some kind of cash flow. When it comes down to it, my holidays are basically with my cousins and in spite of some of those awkward moments we talked about, I do really enjoy their company.

Kylie: My kids are the same way! When I couldn’t go up north in 2015-2016 Ben really felt it, he was just so used to going up and catching up with family and he just missed them so much.

Thomas: It’s funny how much people on the spectrum enjoy their families. From Playing Beast Wars in the bush to playing board games and getting drunk today. I have to thank my cousins for getting me motivated to try new things.

Kylie: It’s interesting that you mention trying new things.

Ben did a lot of camps when he was younger. It really developed his self-esteem and helped with trying new things. Now he loves to try new things and will always give it a crack! The Sydney Academy of Sport in Narrabeen run kids camps every school holidays. 5 full days of canoeing, archery, outdoor rock climbing, fishing, sailing, bush walking, making damper. They have all these really fun activities and the kids end up doing all these fun things.

Thomas: For me I never really left the family when I was a kid. I did however go on a massive holiday with mum to New York and Poland. I still remember a lot of moments from that holiday. Getting eggs, hiding in haystacks, running through corn fields.

Mum and Dad did try to take us on other holidays, without our cousins, but the problem was that the interests of my parents and those of my brothers and I were very different. I am not a camper and I am not a fan of going to sleepy beach side towns.

For my twentieth birthday they took us up to Port Stephens for a fun birthday week. The problem that I faced however was that I really wasn’t a fan of small towns at that time. No wi-fi, no PlayStation, no way to read my birthday messages, it all just sucked. But I couldn’t tell mum and dad that I wasn’t a fan. I tried my best to put on a cheery face, but they knew I was not enjoying it. At least that was the start of my love for Xena!

Kylie: Every two years we try to take the kids to Fiji. Nathan always struggles but Ben likes it. It was most likely because of his trips to Narrabeen that he found Fiji so much fun. Nathan on the other hand likes not going to school but prefers not going away from the house. Because there is no internet connection, it gets quite difficult for him.
What really helped all of us was when I started taking visual aides. {laughing} The staff said “that was a god send!”

Thomas: Thank god for visual aides! What does Nathan enjoy?

Kylie: Well, Nathan likes trains, he has this big fascination with the titanic and lastly he likes his iPad.

Thomas: See, if I was Nathan I would go to a lot of museums. You know like the Powerhouse and other museums that show how machines work.

Kylie: You know what, he loves museums!

Thomas: See! Great minds think alike. I have a feeling we should talk about what advice we could give others who want to take their son or daughter on holidays. Also there are all those Neurotypicals out there (Basically the normal folk). Maybe they can learn something new too.

Kylie: First thing’s first, always be prepared. You think you may have heard it all before, mums and dads of kids on the spectrum, but trust me, you haven’t.

Kylie: Take whatever you know that will make the trip easier for them, whether its toys, sensory items and things that will help get them to sleep. Medicine and comfortable clothing. Anything you know that your child will need to help make their life easier.

For instance, I always give them each a backpack and I tell them to put what they need and want inside. I will always be ready with Nathan’s ear defenders to help with sound. One time we were up to see the rest of the family and one off the family members wanted to go to the pub for dinner. I knew exactly what to do! I told Ben and Nathan what was going on, when we got there we found out that there was this god awful band playing, so we decided to get a table as far away from the band as possible and we got out their ear defenders and iPads.

Thomas: Wow, my mum was good at helping me, but you’re something else! There’s not much I would change from what you just said. I would say a schedule is good, also a bit of mystery can really awaken an experience when going somewhere. So you can have the things to look forward to as well!

Kylie: I just wanted to add to that: “Those who don’t mind matter, those who don’t matter, mind.” Forget what everyone else maybe thinking, you have enough to deal with as it is. As parents you have too much going on in your life as it is to be worried about someone else’s thoughts.

Parents, please make sure you take your own holidays, by yourselves. It helps you recuperate and become much better as parents and it helps you guys live healthier lives.

Now for anybody that isn’t aware of the nuances of autism or don’t quite know that much about autism. The more you can educate the less they will be ignorant. The less ignorant the more compassionate they get. If you have people coming to your place with autism be compassionate, don’t judge; the parents are doing the best they can.

Be open to learning because it’s hard enough for kids on the spectrum without being judged by others. You guys rarely see the meltdowns that our children have because you only see them for such a short time, you don’t see what’s going on behind the scenes. These children aren’t in a comfortable environment but they are really holding it together.

Building that rapport can really show the world how wonderful and beautiful these kids really are! Ben is so reserved and quiet so they don’t really see the real Ben, because they don’t take the time to build up that rapport with him. If they take the time to build up the rapport they would find that he is this kind, funny, loving child.

Thomas: You stole the darn words out of my mouth! I say a lot of people today have a set mind frame and for quite a few people it’s either “my way or the highway”. I would say “keep an open mind.”

If there is one thing that I have learned by being on the spectrum it’s that you need to be open to trying new things. When you learn about what it’s like to live on the spectrum and appreciate it, you can make the world an easier place to live, not just for people on the spectrum, but for everyone else too.

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