Preparation Is Key on A Curious Journey


Podcast Episode 57  Days out and going on holiday is an important part of family life, but when a young person has additional needs they can be much more of a challenge. How to make the process easier is the focus of this podcast episode with Lizzie Murphy, from A Curious Journey, offers some tips and ideas on travelling with children who have additional needs.

Lizzie talks about the importance of preparation and making sure that everyone understands what is going to happen, and preparing for the unexpected. She suggests some useful tools which can help manage expectations. Lizzie also discusses practical ways to prepare for each journey, including talking to airlines and researching what destinations are already able to offer in terms of assistance. As she highlights, there are tools out there already which can help make the whole experience much easier for parents and children.

The benefits of having new experiences are obvious in helping build a young person’s confidence and social skills, as well as creating family memories. However, we can all sometimes feel overwhelmed by the preparations needed and its reassuring to know there are proven approaches to dealing with many of the issues that arise.

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Podcast Transcript

DEBRA: Welcome to episode 57 of the Journey Skills podcast. They do say timing is everything and I hope this is the case, at least for some people, with this episode. It’s coming up to Easter Holidays here in the UK so it’s that time where most parents, myself included, start to think, so what exactly am I going to do to keep my child occupied over the holidays that do not involve a screen of some sort? My guest in this episode might be able to help. I’m talking to Lizzie Murphy who runs a travel blog for parents of children with additional needs called A Curious Journey, hence, the podcast name.

Lizzie has two young sons, so like many of these things, she started the blog because she saw a gap and wanted to help, not just herself but others. This blog is geared towards younger children but having said that, many of the ideas she shares are still relevant whatever age your child might be. Because of where she lives, some of the tips are also UK-focused but again, many of the ideas she talks about are pretty universal.

In our chat, Lizzie shares some of her own experiences of travel with her young children. and also some ideas on how to make the whole leaving-the-house and surviving-the-day-out a bit easier. And I use the term ‘surviving’ because I think that many of us have had those kinds of days and maybe sometimes still have them. But with planning, as Lizzie says, they can become great family days out.

We also talk about managing our children and the help that is out there if we do ask and we do touch on how to deal with other people around as well. And Lizzie actually mentions something that we only discovered about a year ago, which is the sunflower lanyard, which is now available at many UK airports. This lanyard is designed to provide a way to identify that help might be needed but in a very discreet way. And I assume there are other similar schemes around the world, and please do let me know if there are any near you so that we can spread the word. And I wouldn’t be over-exaggerating if I said that this simple lanyard has changed our flying experience, not only where we fast track the last time we were at the airport through a potential two-hour queue when I am in the morning, but my daughter believes that this lanyard has some sort of superpower which makes flying actually quite a good fun. So next time we’re at the airport, I think I might go and get a couple of spares.

I know from my own experience that there are days when I thought it’s actually easier not to go out but I force myself, and on many occasions, my daughter, to actually go somewhere. And a great number of those days have created those kinds of memories that help for their welfare. Not only that but as Lizzie talks about, they have given my daughter life experiences. She certainly isn’t going to develop all the skills she would need to one day live independently sitting at home, however, easier that might be.

DEBRA: Can you just tell me a little bit about your journey, to no pun intended, and what A Curious Journey is all about?

LIZZIE: I’m a journalist. I’m a mom to two young boys, age 6 and 4. Both of them have global developmental delay and hypermobility and the eldest was diagnosed with autism at the end of last year. I set up the blog A Curious Journey about a year ago to help parents of children with additional needs who were at the start of their journey and I wanted to help them with information that I didn’t know a few years ago. It was a general parenting blog at that time with a section about traveling and days out. I think I was a bit naive at the time and thought that everyone would flock to my blog and all the wisdom that it had. I realized very quickly that there were a lot of people blogging exactly the same things I was blogging about. Travel and days out are kind of my passion so I decided to niche down to the travel and days out part of my blog which was a bit that I love the most.

Before we had kids my husband and I would go on holiday, we would travel around the country, we wouldn’t necessarily just stay in one spot, we just loved exploring and now we’ve got the kids and kids with additional needs, holidays are a bit more challenging and I think a lot of people are in the same boat and I couldn’t really find anybody else that was talking about just travel and days out. I was always looking for hints and tips and places to go and I just couldn’t find all of that information in one place, so now that everything’s a bit more of a challenge, I mean both boys have hypermobility which presents itself as extreme double-jointedness and it affects both their gross motor skills and their fine motor skills. They’re both still tire easily and so trekking about all over the places a bit more of a challenge.

So, I wanted to create a website with everything in one place where people could see if they were going on a day out, they could get hints and tips for days out or if they were going on holiday, suggestions on places to go because we all struggle with that. You might only have one holiday a year and you want to make that a good holiday. You’re spending a lot of money and you want somewhere that’s going to be as relaxing as it can be.

DEBRA: The tips on there, did they come from your own experiences?

LIZZIE: A lot of it was from going away as a family ourselves. We’ve been to a few places just mainly in Europe and in the UK. We traveled around Germany with our almost two-year-old which was quite adventurous because he wasn’t actually walking at that point, and I was pregnant, he wasn’t walking and we were getting trains everywhere. It was a great holiday but with hindsight; preparation, if you’re going to embark on a trip, is absolute key. We learned the hard way on that trip that you need to prepare. We’ve just come back from a holiday to Lapland and travel to the northernmost part of Finland in the middle of absolute nowhere which required 4 planes in 4 days. So that’s probably been our most adventurous trip as a family.

As I say, preparation is probably the key. One of the biggest questions I’d say to consider is when to tell the kids you’re going on a holiday. We had the Lapland trip booked in March last year and we told the children about 4 days before we went. Telling them too early will make them anxious particularly the older one and our daily lives will become an absolute nightmare with the constant questions: Are we going yet? When are we going? Are we going today? Why aren’t we going today? Just makes your head hurt, however, leaving it too late means that they won’t have time to prepare. When we were looking to go to Lapland, I saw all these cute videos on YouTube, so cute but I just knew in reality that we wouldn’t be able to do anything like that because it would just send them into a spin and completely ruin it.

So, we went on a Thursday and decided to tell them the weekend before we went to give them enough time to prepare for what’s coming. We shared booklets and videos and social stories about different aspects of the holiday. That works quite well. So, they were able to get excited about it but without too much of a gap in between telling them and going. One of the things that we did to prepare for the holiday was to create a holiday booklet (you could either have that in a digital form or hard copy) and it contains lots of photos, details of what to expect including going to the airport, holiday accommodation, the areas you’ll be staying in, as well as any activities that you’d be taking part in.

For our holiday, the place we went to had a good website and it had pictures of the activities that we were going to be doing and videos as well. So, they could picture in their minds exactly where we were going, what it was going to look like and the sorts of things that they would be doing when they got there. We took a few minutes to look through it every day. You could also take it with you so you can look at it on the plane and keep it in their minds what it’s going to look like. We looked at the hotel website, some of the hotels have videos showing you around the accommodation or activities that you’ll be taking part in which can help create a fuller picture of what to expect on the holiday, so we found that very useful.

Using social stories, thinking about what situations that child might need to understand and maybe create a social story to help them. For example, helping to prepare for any change, anticipating the possibility of an airport delay or any last-minute changes to help with anxiety issues, that kind of thing. Not necessarily something that you’ll need every time, but they can be helpful to kind of ease the transition. Some children are obviously quite visual and might benefit from a Now and Next board or visual timeline, you could use that when you’re on holiday so that they know what’s coming out after their current activity.

When we went to Lapland, we had quite a jam-packed agenda because we were only there for a short amount of time. Having that visual timeline really helped. If it’s something with Velcro, you could stick the pictures upon Velcro and then peel them off when you’ve done that activity and they know what’s coming next. Or the Now and Next board, this is what we were going to be doing afterward. Just to show them what you’re going to be doing and when.

And then, I guess in advance also talking to them about any worries they might have about the trip. You could read relaxation books to help with anxiety, get them to write down (if they are a bit older) or draw their worries. There are worry-eaters that you can get so they could put their worries into the worry-eater.

There are lots of things that you could do even before you set off on the trip to help prepare for going on a holiday. Before you even get on the airplane, the airport is going to be a big deal. Because we’ve not been on a family holiday for over two years everything was unfamiliar and there was lots of potential for meltdowns. My eldest is really noisy and talks very loudly and his favorite thing is to blow whistles so sitting on an airplane, not shouting or blowing whistles had the potential to lead to frustration and coupled with that, taking off, landing, ears popping. There are just so many trigger points that could’ve gone wrong.

But I think there are a number of ways that you can help reduce the anxiety if there was any anxiety of flying. Try contacting the airport in advance to see if you can access pictures from different areas: showing the departure entrance, check-in desks, possible controls, security, departure lounge. All that kind of different areas about the airport that you’re going to walk through. And then you can make it into a game so you could take it with you, have it like a checklist. And when you see the check-in desk, tick! Passport control, tick!

The main thing that helped us when we were going through the airport this last time, and something that I didn’t know existed previous times when we flew, was the sunflower lanyard. They offer special sunflower lanyards you can wear on your journey throughout the airport. It doesn’t really matter who wears it but my eldest has an obsession with lanyards so it went straight around his neck but if they don’t like things around their necks then you can carry it or hang it off the bag. It enables the staff to recognize that you have a hidden disability without you needing to declare it and enables you to fast track through queues. You could check the airport’s website for details of the scheme in advance but we just went to the airport and went to the special assistance section so they gave us the lanyard and that just made it really easy.

The concern for us was changing because we had to change planes in Helsinki and they don’t have the lanyard system so we tried to contact the airline in advance but we didn’t get a response so when we were on the plane, we talked to the airline staff about what we would need when we got to the other end and they said that they would pass it on to the airport staff on the other end, that didn’t actually happen. So, as we went through the airport, we just actually explained when we got to the desk and we found a quiet desk and just told them what the issues were. At Helsinki and the Ivalo airport which is a tiny airport in northern Finland, whenever we mentioned this, we were still fast-tracked through the queue and everyone was really understanding. So that’s also worth trying if they don’t have a special system in place. It’s just explaining the situation and I think most people are understanding and you know sympathetic to what you need.

So other things that you can do with the airplane are if you think that as a family you need to sit in a certain seat on the plane make your airline aware of it. If you have children who struggle with stairs or they can only eat certain foods and this which might present a problem on the airplane, whatever it is that you think might be a problem, it’s always worth contacting the airline and seeing if there’s anything that they can do to help. Some airlines will also let families who have children with additional needs check in at a quieter time. We got the choice of boarding the place first or last and we decided to board last so that we weren’t in a confined space while everybody else is getting on the plane. It made the whole process so much easier and more relaxing.

And then plan for sensory issues as well. My oldest is sensitive to noise so we packed ear defenders and you can also get flight earplugs to reduce cabin pressure in the ears so maybe that might be an option for older ones or if your child’s comforted by certain fabrics then think about what they might wear for the flight that might help. If they benefit from weighted items, you can get sensory vests. My eldest wore a sensory vest which is a really tight vest which helps you feel a bit more secure and helps to regulate body so he wore that and that helps him on the plane but there are lots of other things that you can get which could help to reduce anxiety.

You could also practice routines in advance. So if they are worried about the flight, you could do a little role-play to practice going through the check-in or the security or practice carrying bags/ wheely cases so that they could help out at the airport. And then another thing that we did when we went away was creating an emergency pack. This is something that you can bring out if you can sense a meltdown coming on. My children each had a bag themselves which they had things in that would entertain them on a plane and then I had the command control bag, the emergency bag. In that was snacks, you could put their favorite music in, ear defenders, games, a tablet or a comfort toy. Whatever helps them when they feel anxious. I think as a general rule, plan for maybe one or two activities per hour including meals and then some things might take a little bit longer, shorter and that kind of helps to plan as well. Those are probably the things I would say for the flight.

DEBRA: All the tips that you’ve given are fantastic and obviously we manage our own children, do you have some ideas about how to manage other people’s expectations of what your children may or may not do?

LIZZIE: With other passengers, I think that’s obviously quite difficult. You can’t just stand up and make an announcement on the plane that you’ve got a child with additional needs, can everybody be mindful of that but I think the most important thing is letting the airline know and possibly the staff when you get on the plane. Then if there are passengers who say anything or if there is a problem with another passenger on the plane towards your family or towards your child, then let the airline know and they can step in.

It’s hard to manage other people. I think the only thing you could do is really manage yourself, in a way. I think with any walk of life, it’s hard to get other people to understand. And there’s going to be people who don’t understand why your child is behaving in a certain way. But I think preparing in advance, talking to the airline will definitely help with that level of understanding. And if other people say anything then I guess depending on what you say, you just have to deal with that when it arises. Maybe think about scenarios in your head about what people might say and what your response would be to that. We’re actually quite lucky that we haven’t had a really negative response when we’ve been traveling. We didn’t have a problem on the plane. So it’s just about preparing your family for the flight, thinking about things and possible trigger points that might cause a meltdown and just explaining to anybody around you who is upset on the plane, if and when that arises.

DEBRA: You’ve talked about holidays, what are some of the tips for day trips because obviously, you don’t give them 4 days notice that you’re going to go and do something, how long would you give them if you decide you’re going to do something on the weekends that’s a little bit different?

LIZZIE: Usually, if it’s the weekend, the day before or one or two days before, I would say. Just to give them enough time because, at the end of the week, there are still things going on with school and whatever, and so, probably on Friday morning. If we’re doing something the next day, I would tell them what we would be doing and use some of the preparation tools that we’d use for a holiday.

A lot of venues for days out are quite up on welcoming families with additional needs and they will have a separate section of their website dedicated to that. That will definitely help. So if you’re planning to go somewhere, look up their accessibility policy on their website and it should tell you exactly what they’ve got and if it’s somewhere they haven’t got that policy, you can just look at the website, look at the pictures on the website, maybe Google Youtube videos, just so you could see exactly where their going. Kind of plan for it in the same way that you would plan for a holiday but just possibly with fewer steps.

Obviously, plans change over the weekend, you know, you might suddenly decide It’s a lovely sunny day! Let’s do this. Those are potential trigger points for the unexpected things happening but tell them where they’re going. My children would have lots of questions if its something that suddenly sprung upon them. Have the website ready, show them where they’re going, and then just make sure you’ve got all the bits that you would need and again preparation is key. The things that are in your emergency pack for the plane, a lot of them will be relevant for a day out too. It’s often the unexpected that cause the issues and that you always have to be one step ahead at things, so you’re planning for something but in your mind, you need a plan B if, you know, something goes wrong or you need to change those plans.

There’s so much more preparation that you need to consider than any neurotypical families and unfortunately, there’s just no way around that. If you want to go out and have a nice day, then these are just things that you need to think about and if you do you think about these things then the day will go so much better. There will always be things that might trigger your child and unexpected things that you can never plan for, but by preparing it gives you the best chances of success I would say.

Also, some places open up early for children with additional needs so before they open to the public, they open for families with sensory issues or autism or other additional needs who would benefit from a quieter environment. The more attractions they get this out, then the better it is really because going to a quiet time makes so much difference. So when you’re planning for a day out as well, if you’re going somewhere that doesn’t have early opening then you just need to think about what time of day will be right for you to go. So, often for us the children are more wide awake in the morning, they get up early and by just after lunchtime they’re exhausted. And that’s whether we are at home or out so it’s better for us to go to places in the morning.

Just decide when’s best and how long to stay there, because sometimes everything goes really well and then they get to that point that they get overtired. It’s going to hit meltdown point and you have to leave with them screaming. So often it’s better to leave just before that point and you know you’re own child when that will be. It is hard. And it will be hard for families with additional needs. Harder than it will be for neurotypical family but if you want to get out and if you want to show your children new places and new things that will stimulate them and you know, stimulate new conversations, grab their interests then these are just things that you can use and just find ways of tweaking them to make them more suitable for your family. But the benefits of getting out there and seeing new places and not just doing the same things every single time, the benefits on the children are just enormous and it will stimulate new conversations in children who just like to talk about the same things all the time and that is something that they will talk about for weeks to come.

DEBRA: Key takeaway, pretty easy really. Preparation is everything and over-prepare if you can.

Resources
A Curious Journey
Facebook Group – Travelling The Spectrum
A Curious Journey on Twitter

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