Dare to Dream with Amanda Hartley

Illustration for Rarity Life by Annie Dewhurst

DARE to DREAM

With the summer holidays behind us many of us will already be dreaming about our next holiday. Anyone who has travelled with young children will know that sometimes holidays can feel like a bit of a busman's holiday. For those who have a family member with complex needs the idea of travelling can be overwhelming, and it sometimes becomes easier not to dare to dream of visiting far away destinations. Amanda and Jay are proud parents to two beautiful children, eleven year old Jamie and nine year old Jessica. Jessica has a rare genetic condition, STXBP1 and lives with complex epilepsy, limited mobility and learning difficulties. More recently Jamie has been diagnosed with long covid, and is fighting hard to become well again. The Hartley family refuse to stop dreaming, and over the years their family holidays have included Dubai, Tunisia, Lapland and France.

The Hartley family on a winter holiday

WE ASKED AMANDA HOW SHE PLANS THEIR TRIPS, AND SHE EXPLAINED THAT FOR HER IT IS A CONSTANTLY EVOLVING PROCESS, AND THAT SHE ALWAYS LEARNS SOMETHING FROM EACH TRIP THEY DO. BELOW SHE SHARES HER TOP TEN TIPS.

1Discuss countries with the family, research the chosen country, area, and hotels/accommodation. "We start with our finances and look at what we can afford for the holiday, we then set a budget and start exploring what might work within that. I will explore different options with local travel agents, who have a wealth of knowledge and can help us find what we need.” Before they book Amanda also does a lot of local research, often joining local online forums for insider tips. Using an app helps understand the local terrain and flags accessibility issues. As Amanda says, “I don't think you can do too much research before you book."

2Make a checklist for all loved ones and their needs. Consider the individual needs of each member of the family in terms of mobility, medication, safety whilst in transport and food intolerances. Amanda’s top tip is to think about what each person needs for the holiday, and to plan for all eventualities. “We want to give Jamie a childhood, to be able to say I did go to these places, because I don't want him ever looking back at Jessica and thinking that we didn't do something because of her needs. There may be a time where it will come to the stage that we just won't be able to do these things anymore. But for now I feel like my confidence has grown with it, mainly because I do so much research. I’ve got spreadsheets where I plan out what happens if and when we need to be flexible, so I’ll list what we're going to do if for example Jessica has a seizure and needs to stay at the hotel, then we have a plan b for Jamie’s day.” 3 Contact accommodation - email is better for a paper trial. “Once we have decided where to stay, I immediately email the hotel and I give them a list of what we need. For example, I make sure the rooms are accessible, and if they’re not at ground floor then we must have access to a lift. I ask for images of the room so I can see the layout and plan where things will go, we move the bed against the wall and one of us shares with Jessica to keep her safe. We also request a fridge for her medications.” Amanda and Jay also make sure they get to know the hotel staff once they arrive, so that they know Jessica personally and can try to meet her needs. Jay takes the extra step of giving a nice tip to the waiters, as they have found this helps ensure that "they will look after you, and we’ve found for example that once they know what we need for Jessica they make sure that it’s already at our table."

^ Amanda & Jessica sightseeing in Paris

Jay & Jessica enjoying the beach

USEFUL WEBSITES

• The Arc, Wings for Autism • The Friendship Circle • Autistic Globetrotting 4 Contact airline and arrange special assistance It’s not always well advertised but every airline has a special assistance programme, and through this you can book the support you need. You provide the information that they need (for example wheelchair dimensions) and apply for a medical bag (which gives an extra 5k luggage for medications). “When booking I try to make sure our needs are taken care of and I always print the emails off so I've got everything to hand to show them what was agreed. Ask if the airline can facilitate a dignified, private changing space on board. This is usually in the hostess trolley bays but ask for a mattress on the floor for hygiene purposes. We ask for seats near the kitchen/bathroom area so Jessica does not have far to go as wheelchairs are not allowed on board. Some airports will let you go in advance and take your child/loved one to familiarise yourselves. You can also view airport layouts online to help you plan."

5

Contact the local hospital

It is always worth checking the location of the local hospital. This can help you plan for distance, time and ease of getting there plus any costs involved like taxi fare etc. You can also check if they have a foreign language translation service if needed.

6Social stories - this is a great resource in helping your anxious child A social story is a narrative made to illustrate certain situations and problems and how people deal with them. They can help children understand what they might experience. See website links in the boxout.

7

Medications

Check the countries policies on medication and equipment. Some countries have prohibited lists of medications that are banned from the country. These countries will usually have a Ministry of Health that you can contact in advance to ask for approval. Amanda works with their doctors to provide a letter, and takes a copy of all prescriptions, especially for any liquid medications. “When we decided to go to Dubai the first thing I did was research their medication lists, because even codine is prohibited from being taken into Dubai. The list of prohibited medications can be viewed online. I applied to their Ministry of Health for an exemption which you can get with the correct doctor's letters, fit to fly certificates etc.”

8

Travel Insurance

“Shop around and contact all the underwriters in advance of taking out a policy. Usually, premiums will increase with declarations of diagnosis. But I think as long as you're open and honest with the underwriter, and you break down what the diagnosis might mean in terms of medical needs, they can decide what cover you need. I always try get a letter from the paediatrician to confirm that although they're not aviation trained, they would allow/recommend the child to fly.”

Family holiday photographs featured are courtesy of Amanda Hartley

9

Social media forums

“Social media is an amazing resource, you can join forums and find out a wealth of information for countries, local areas, and hotels. Once you have found a hotel you like, you can usually find a forum for that hotel online. The forums are a great place to ask for advice about staying there with children with special needs or disabilities. I find people are always very helpful especially within regards to children.”

Jay, Jessica & dolphins!

10

Last but not least… have fun

“Travelling abroad with a person who has additional needs is always stressful and can be hard. BUT, the memories, the smiles and the change of scenery make all the hard work truly worth it. For me I want to go and have a bit of sunshine and sand between my toes, and just create those memories with the family.”