Travelling with a child living his best life… oh and he has ADHD and hydrocephalus!

Photography by Ruth Jalloh, February 2019, Stockwell, London.
Look past the rain and you will see the real beauty

The thought of travelling for 23 hours with a child with superpowers (also known as additional needs) made me feel like the Meh, Emoji! it was neither a negative nor a positive feeling… it just was.

As long as we plan well we will be fine!

Ahmed Jalloh, January 2019

We started by communicating with our son early, telling him that we were going on a trip, where we were going, why and how long it was going to take. We asked him what he wanted to take with him and what he wanted to do whilst we were on the plane. If he knows information ahead of time and is able to contribute in some way to the travel plans, then he feels a sense of control and understanding. So we worked through what was possible and what was not possible (and why) and agreed on a plan of what he will take in his backpack and what he will spend the 23 hours doing.

We agreed on a mixture of interactive and technology-based activities. This ensured that we played games as a family but equally important, we had some downtime, whilst he had the technology. I know some people do not agree with screen time for children in general and especially children with ADHD (you can see the behaviour change), we have learnt over the last 10 years to choose our battles and this was a battle we were OK losing for the long gain.

We also tag team…for an hour I will be the ‘lead parent’ then my husband will take over, then I will take over and back and forth. This allows us to have some personal time and some time with our son without feeling overwhelmed. It also allows us time to focus on our daughter. Having a sibling with additional needs cannot be easy for her; she is more of an introvert so we have to be careful that she does not get lost in the family dynamics and that she is encouraged to have a voice, speak up and have one on one time with both of us. She has an amazing relationship with her brother who idolises her. They are (considering how different they are) two little peas in a pod. This was something I was concerned about even before diagnosis; would they be close to one another? I was super close to one of my brothers (I have four older brothers) growing up and my childhood would not have been what it was without him.

What we packed in his hand luggage…

We ensured that our son was involved in the whole moving process and packing was no different. He chose the hand luggage bag he wanted to take (as he would be carrying it) and helped decide what he would pack. We went with the following;

Lego in sandwich bags (so they do not get mixed up and cause a meltdown because he can not find a specific part)

Travel board game book, with attached dice (so it does not get lost and cause World War 3 mid-flight)

Books, so we can continue with the pre-bed reading. Our son really likes to read and be read to, so this one is a win-win all round

Ipad with pre-loaded games and shows that we know he likes and are familiar to him. This coupled with the in-flight movies (which will be new to him), should provide a good balance

Snacks some from home for the journey to the airport and choosing snacks before boarding. This for our son is key and such a simple thing that we can do to help the process be a lot smoother

Clothes have to be layered, which allows him to take off or put on more layers easily. My son does not feel hot or cold; he would fly in his underwear if he could, so he needs reminders about the appropriate attire for different climates. I am also bringing PJ’s and a spare casual outfit for him, this helps him distinguish between night and day and helps him understand that we will be travelling for two separate days. He still does not understand the concept of time fully. We can share with him some examples of each day we are travelling, for example, Day 1: you wore your blue tracksuit and we were in Taiwan and Day 2: you wore your black shorts, that’s when we landed in Australia.

Ear defenders are a must when travelling for long periods of time and/or away from his normal environment. He is very noise sensitive so flushing the toilet, using a hand dryer, loud bikes or cars, the sudden crash of water when running a bath etc. all affect him and cause him some distress. The ear defenders help with this and he is able to regulate his response to these situations a lot better when wearing these.

I often get asked if we tell other passengers about our son’s superpowers?

Now that he is older, no we do not! When he was younger and we were still trying to figure things out ourselves, we were more open to telling people. On reflection, it was in the hope to reduce the judgement or the stares. But now, we have some effective strategies in place and our son is very articulate about how he is feeling and why he is feeling that way, so we are able to help him figure out the best coping strategy. We know our child best, so we know when we should alert fellow travellers.

Additional Tip 1: It is important when travelling that there are breaks and opportunities to just run or do gymnastics, otherwise he will want to do this when the time is not convenient. So when we get to the airport and have taken care of all the ‘adult things’, such as checking in, security etc. we find a quiet area where he can run up and down, do flips, tricks etc. without getting in anyone’s way and/or causing any disturbance to other people. It helps to get it out of his system and also helps tire him out a little, so bedtime is a lot easier.

Additional Tip 2: we ensure that we give positive reinforcement for good behaviour and make a big deal about the new experiences we are having as a family.

“Travel isn’t always pretty. It isn’t always comfortable. Sometimes it hurts, it even breaks your heart. But that’s okay. The journey changes you; it should change you. It leaves marks on your memory, on your consciousness, on your heart, and on your body. You take something with you. Hopefully, you leave something good behind.” – Anthony Bourdain

4 thoughts on “Travelling with a child living his best life… oh and he has ADHD and hydrocephalus!

  1. Travelling even the most shortest distance with a child with additional needs involves military style planning (as I often find when I take my autistic nephew to central London), so it was interesting to see your strategies.

    Being the rascal I can be, I often bribe my niece to accompany me when taking my autistic nephew on any journey further than the shops, where she unwittingly plays a role in my MAD (mutually assured destruction) coping strategy.

    You see, like your daughter, my niece has an exceptional bond with her brother and although younger, is fiercely protective of him. I truly admire your patience with a public that can be callous, and cruelly judgmental about children with additional needs, but my mind is weak and I require a big stick to maintain order. So when my coping mechanisms become totally eroded by the continuing sneers of some prehensile neanderthal – I have been known to release the beast that is my niece (wow, that almost rhymed!)

    Glad you and the fam got there safely and keep us informed on this fascinating adventure xx

    Liked by 1 person

    1. Hi Lance

      It can be difficult at times, but we have developed some great strategies over the last 10 years; he has made us both better people.

      I hope to upload a blog soon detailing what we got up to in our first week. I really can not believe we have been here a week already.

      I hope all is well with you.

      Liked by 1 person

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