Can You Take Young People With Additional Needs On Overseas Mission?

Going on an overseas mission trip can often be a transforming and life changing experience; offering an opportunity to serve in a very different culture and environment, challenging our worldview and our perceptions of our role in the world.

Taking young people on a short-term mission trip experience can equip them and inspire them for a lifetime of service, or at the very least cause them to think critically about the consumerist ‘it’s all about me’ culture that we live in.

But why should transforming overseas mission experiences like this be only for so-called ‘mainstream’ young people?

Why shouldn’t everyone, including young people with additional needs or disabilities, be able to experience trips like this too?

So often, young people with additional needs are excluded from overseas mission trips like this unless they are accompanied by a parent or carer, but is that the only way that all young people can be included?

I recently had the great privilege of taking a group of young people on a 10-day short-term mission trip to South Africa.

12 of us, including 10 young people, a female leader, and myself, joined with groups from across the UK totalling 120 together to build homes and hope for disadvantaged families in a township, work with the local children through a kids club, and to see the young people blossom, grow, and be transformed by the experience.

Included in the group was an autistic young person for whom this was their first experience of being overseas away from their family.

What sharing this journey with this young person taught me is that anyone can go on a short-term overseas mission trip, and that doing so can be a really valuable and inspiring step in the development of a young person with additional needs, just as much as it can be for anyone else.

There are many ways that a young person with additional needs can be supported to participate in a short-term overseas mission trip.

My journey with Timmy* has helped me to understand these better and so I share some of these learnings with you as I ‘think out loud’ about this for the future:

  1. Planning and preparation

It is important to know as much as possible about a young person with additional needs before the trip starts.

What are the things that they are likely to find difficult?

What triggers might there be that can lead to them struggling to cope?

What support can be put in place to minimise these potential flash points and what strategies might we need to have up our sleeves to help the young person if they become overwhelmed or anxious for example.

Good, open conversations with the young person themselves, and the adults that care for them at home, can help us to create a profile of the young person, their needs, and how to support them, long before we travel.

  1. Daily/weekly schedule

Right from the beginning of the trip, it was important to provide information about the schedule for the next few hours, the day, the rest of the week.

What is happening now, what is next, what is later.

By breaking the trip down into bite-sized chunks it was much easier to provide the support needed for each stage of the trip.

It also helped the young person to be able to focus on the next thing, rather than being overwhelmed by thinking about everything in one go.

A learning for next time will be to provide some better resources to aid this, including a day-by-day timetable with photo’s (and possibly symbols if required) to give to the young person.

Having this information clearly displayed in the accommodation and at the work site will also help.

We were in Africa, so scheduling and timings were a little fluid, but some key points in the day remained fairly fixed and provided a base for the rest of the programme.

  1. Providing a ‘safe space’

At the accommodation (based on a converted farm), the young people could get away from it all for a bit by going to their dormitory, and there were plenty of other quiet safe spaces that they could access if the dormitory was busy and noisy.

At the work site, we identified a quieter safe space that could be accessed as required.

It enabled the young person to be able to get some calm time away from the noise and hubbub of the work site when they needed it.

  1. Identifying specific roles/jobs

Not all of the tasks on the work site were ideally suited to a young person with additional needs, so it was important to identify some specific jobs that were within their ability, while still stretching them a little with new things to do.

Sometimes the young person was able to get involved in the tasks the other young people were doing, like applying a cement plaster/stucco to the walls of the house, working alongside their peers; sometimes the young person needed an individual job that they could do at their own pace such as a litter pick around the site, or cleaning the tools.

New skills were developed, a good contribution was made to the project, while not overloading the young person.

  1. Regular check-ins

Making sure that we regularly checked in with the young person, several times a day at key moments, ensured that any issues were caught early.

Trust developed through the building of relationship which enabled the young person to discuss how they were feeling when things were tough, allowing us to provide better support.

Listening was really important, making sure that the young person had the time to say how they were really doing; even making eye contact across a room, with a little nod meaning “I’m OK”, was important.

As a result, although the first few days of the 10-day trip were sometimes difficult, the rest of the trip saw the young person flourish and do really well.

  1. Buddies

Ensuring that the young person had another young person, a friend, with them in their dormitory that could help them, check that they were OK, help find things that they had mislaid, remind them when it was time to get up, go to meals etc. was invaluable.

Having a ‘buddy’ nearby also provided us as leaders with an early warning system if anything wasn’t going well.

  1. Flexibility

Sometimes there needed to be some flexibility to any rules or guidelines that were in place.

For example, while we generally discouraged the young people taking technology to the worksite e.g. iPods, mobile phones etc. we realised that for some young people with additional needs being able to shut out external noise by listening to some music and/or using ear defenders was essential.

As a result of this understanding of the needs of some young people, we were able to provide some flexibility to these guidelines and support the young people much better.

  1. Celebration

Throughout the trip, there were opportunities to celebrate the progress the young person had made.

It might have been little things like successfully completing a task, or bigger things like contributing something that had helped the whole group.

Celebrating a successful day, the end of the project, or the trip as a whole all help build the young person’s self-worth and confidence, which helped give them positive experiences to look back on when things were harder.

  1. Prayer

It was important never to underestimate the power of prayer.

Taking a young person with additional needs on a mission trip totally outside of their comfort zone, to the other side of the planet, needed strong prayer support.

Having a team of people praying throughout the trip was essential to its success, and knowing that we could send some specific prayer points for immediate support made all the difference.

  1. Post-trip Review

Mission trip experiences don’t stop the moment we get home; the memories, the physical impact of all the hard work and lack of sleep, the emotions of working in often difficult environments, all continue on for a while.

It is important to check-in with the young people to see how they are doing, are they experiencing any difficulties associated with reverse culture shock, and to provide some support as appropriate.

This is particularly necessary for any young people with additional needs who may struggle to regulate their feelings and emotions.

There are lots of other learnings from this short-term mission trip to South Africa; things that we will do better next time, things that will ensure that more young people can engage in a life-changing, transforming, experience like this whether they have additional needs or not.

Of the many significant moments that the young person with additional needs we took on mission this year contributed to the trip, perhaps their greatest legacy will be the trail that has been blazed for others to follow.

“Unless the Lord builds the house, the builders labour in vain…” Psalm 127:1a




Mark Arnold

26th July 2018

*Timmy is not his real name

Bible passage used in this blog post:

Holy Bible, New International Version®, NIV® Copyright ©1973, 1978, 1984, 2011 by Biblica, Inc.® Used by permission. All rights reserved worldwide.

It Will Be Fun!

“It will be fun!” I said.

A campervan trip in the middle of winter! 5 of us (and a dog) taking a road trip to the upper North Island in New Zealand.

It has a reputation of being the Winterless North (I am here to tell you that is not exactly true).

Even though everybody thought we were a bit crazy, I thought it would be an adventure!

It was a good opportunity to push Isla (9) who has autism, out of her comfort zone.

I had visions of doing some of the nice walks and outdoor activities New Zealand has to offer, as well as creating some lovely family memories.

So, our plan was to set off from our home in Auckland to venture up to the East Coast of the North Island, crossing over to the West Coast then via Mangawhai Heads on the way home.

We thought 5 nights would be enough time to see everything we wanted to and had our fingers crossed for good weather.

Our motley crew consisted of our 15-year-old daughter and her easy-going friend Brooklyn.

Luckily, she knows our family well enough to be in confined quarters for 5 days and not be traumatised by the experience!

Then there was Isla and her ADNZ Assistance Dog Bo, driver/dad/cook/waste emptier Gareth and me, the tidier, bed maker and nagger.

Isla had been really excited about the campervan.

She kept telling us it was because she had never been in one before and she couldn’t wait to see what it looked like.

We spent some time virtually exploring our Maui Campervan online, looking at the configuration of the van so she knew where she would sleep, have her breakfast and play with her toys and games.

When the campervan pulled into the driveway there was much excitement.

Isla was keen to check out the van in all its glory and start packing it up with individual toys and games.

I eventually would find these spread out in every overhead locker compartment.

The spacious van displayed on the website was looking much smaller in real life for the 5 of us, plus the hairy one, but out we went in the pouring rain with a positive mind.

Over the next 5 days we were all tested and to be honest there were a few tense moments.

This was mainly due to teenager/mother angst but Isla took it all in her stride.

Being away in the off season meant that everywhere where we went was quiet and we were often only at a campground with one or two other (just as crazy) families.

This provided many awesome opportunities for Isla to stretch herself, practice independence and learn new things.

The rain eased off and we got some fine weather which made all the difference and allowed us to do most of our planned activities.

The 5 things we learnt from this road trip with an autistic child are as follows: –

You can have a lot of fun with a torch and gumboots 

Walking to the toilet block from the van in the pitch black would have been an impossible feat without the help of these two items.

Isla hates getting her feet wet and her gumboots are easy to take on and off and let her jump in puddles, walk through the mud and even splash in the sea while keeping her feet dry!

Isla loved navigating the way to and from the van lighting the path with the torch as we went.

When we were close enough in one campsite she even walked back on her own.

We didn’t push the showering each day as it is hard to get her in the shower at the best of times!

We didn’t want to put her off as was quite chilly in the shower blocks at night.

We managed a shower one day when it was warm and she enjoyed the experience.

Wow, she can talk and talk!

Isla has a very enquiring mind and needs a lot of stimulation to feel on an even keel.

On the first day of the trip Isla announced she was going to have a break from the iPad.

It was so lovely having her live in the moment, making observations about our trip but boy she can ask a lot of questions!!!

Now don’t get me wrong I will never get sick of hearing my girl’s voice!

I’m so grateful she can now talk as for a long while there I thought she never would, but after an eventful question filled activity I was grateful for the iPad for some downtime.

Open spaces and nature are so soothing

When Isla is walking on the beach or in any open space she is regulated, happy and relaxed.

Although sometimes it is hard to get her to these places, when she is there she really enjoys it.

Walking for long distances is still challenging but she has come so far with the help of her assistance dog Bo.

She is tethered to him and he helps her stay on course.

Sometimes when walking through a particularly narrow track she will walk independently and has gained so much confidence.

You can really tell the difference when she enters a stimulating environment with lots of people around.

The change in her is obvious to see.

She tires easily, tenses and has a hard time with it all.

Even a small train trip proved too much for her with all the stimulation around and she shut down.

Her patient dog, Bo really helped her regulate herself.

She found it soothing to sprinkle stones on him and feel the bony structures and tendons of his legs.

He is fine with it and if uncomfortable will make it clear and attempt to move.

For those that know Bo when he is off duty, running around like a looney in the park, you would never think he would be capable of this tolerant behaviour.

When that jacket goes on he goes to work it is quite incredible to see the transformation. He is trained to work and he really enjoys it.

There are many learning opportunities to be had

With the help of the Clicker word processing software ( Isla uses at school to help her write she put together her own book of each adventure she had been on.

She was keen to choose a photo and write sentences about her day.

When she got back to school she had great pride in sharing this with her class.

Even a trip to the beach provided a learning opportunity, drawing and writing in the sand.

She won’t draw or write at home all that often. I discovered a picture she had drawn of her and her friend Sammy with the word LOVE.

It doesn’t take much to keep her happy

Isla is most secure when she has her family, her toys and her assistance dog (he was pretty happy too as allowed up on all the beds!!!!).

She felt secure in the van and the mess and chaos didn’t worry her and she doesn’t need a lot to entertain her.

We are always pleasantly surprised when travelling with Isla.

As long as you don’t try to do too much in one day and you explain the plan, she is able to cope with everything just fine.

In a deserted playground in Mangawhai Isla’s big sister initiated a game of Playground Gladiator.

You had to create a routine and then everyone had to follow your lead and be timed to see who would get the best time.

Isla loved being involved in this with us all and we made allowances for her so she wouldn’t come last.

Isla’s says this is her favourite part of the trip

She loved doing the nature walk around the idyllic campground on the Kauri Coast and braving the Flying Fox.

She walked a section of the Opua-Paihia walk navigating some steep terrain and falling on her bottom a few times and managing to get up and brush herself off.

At the impressive Waitangi Treaty Grounds Isla wasn’t interested in the audio tour but was happy to explore the grounds and beach with Bo and I while we waited for the others.

She liked walking through the bush there and feeling the different types of bark on the native trees.

We ended the day with a cultural show that she managed to sit through in the front row without flinching.

She enjoyed the Dolphin Boat Trip in Paihia. Even though she didn’t see any dolphins she handled it like a trooper.

We all enjoyed an early morning walk along the beautiful Opononi Beach. 

Isla enjoyed wading in the water in her gumboots and throwing a stick to Bo.

All in all, our trip was a success.

It was hard work at times, just like any other camping trip but very rewarding.

We are so fortunate in New Zealand to still have these camping grounds in amazing locations that anyone can access.

Isla’s assistance dog was welcome at all the campgrounds as long as he was in his coat and on leash for most of them.

Autism Travel Tips

Travelling with a child with autism is always a little daunting.

We have been fortunate to have been able to take an annual family overseas trip since Isla was a baby.

I am grateful for this with her now being more averse to trying new things.

With some preparation and planning, it is possible for the whole family to have an enjoyable time together.

How Bad Can it Be?

This is my philosophy!

Isla surprises us every time we go away with how well she copes and I think sometimes you have to just give it a go.

I am not going to lie it’s not always easy.

We have still have had tantrums.

We still walk on egg shells a bit to avoid them, especially when out in public as she tends to be loud when she’s protesting!

However, I have grown a thick skin and try not to meet anyone’s eyes when trying to calm her.

The Month Before:

As with most children with autism, Isla will react when things aren’t as she expects.

A month or so before departure date we talk a lot about what is going to happen.

We use social stories (a visual or written guide describing an event or social interactions used with those with autism), look at maps and Google World.

The Flight:

Don’t be afraid to tell the airline staff that you are travelling with a child with additional needs.

They may have “Special Assistance” you can register for that will allow you to board first, get a “meet and greet” from the plane and get through customs faster.

We have used this before, even if their website doesn’t class autism as a disability and is super helpful especially when you land.

We always leave plenty of time for checking in and arrive really early to save standing in too many queues.

Airports are busy stressful places.

I would have no hesitation in putting a belt on Isla with a strap or even reins if she was a runner, but with our family of 5 mostly travelling together, someone is always assigned to Isla.

Isla also wears a Medic Alert bracelet which has my phone number on the back so I know if she ever did get lost then there would be some way of locating us.

Watching the flight plan on the screen on the plane is important for Isla as well as having a window seat or at least being prepared for the eventuality that she isn’t going to get one.

I only found this out on a previous trip when she didn’t have the window seat she was expecting which led to a huge meltdown.

It’s not the best feeling being confined in a small space, like a plane, with a screaming child.

So now I make sure to book our seats in advance, find out about the screens and advise the airlines that we are travelling with a child with autism.

What to Pack:

Isla will often turn her nose up at airline food, I always make sure we have lots of snacks for her in her trusty compartmental lunchbox and take her own water bottle empty that we can fill up on the plane.

I pack a wheel along bag for Isla that she enjoys pulling along with child friendly earphones, some toys and trusty iPad.

We also pack a blanket, a change of clothes, her milk, cup and melatonin for overnight that helps her go to sleep more easily.

Isla stims quite loudly when excited so we have found a chew necklace helps with this when we need to quieten her down.

When Away:

We always try and choose a destination that we will be able to have a holiday as well as Isla.

This ideally involves somewhere warm with a pool. We try not to plan too much and set up the house like home.

For Isla, this is with her toys and iPad.

We tend to do short trips out and then come back to our house and let Isla have some time out.

She sleeps a lot on holiday during the day especially if goes in the car.

This is good for recharging her batteries and we took our own car seat with us.

A small half booster seat is more portable and I have just purchased a seat belt cushion for when she falls asleep and am yet to try this out!

When going out for meals we always check the kid’s menu for cheese pizza, chicken or fish and chips in advance and go to family friendly restaurants.

We normally take Isla’s favourite snack foods with us.

We have until recently taken swimming armbands for the pool (making sure they are suitable for children up to 50kg).

Even though Isla can get around a pool and we are always watching her, in a crowded area gives you piece of mind.

Occasionally we will take Isla out of her comfort zone.

A lot of the time if we can get over the initial hurdle of her not wanting to do it then she actually will enjoy herself.

A loving push we find really helps her expand her interests and social skills.

However, some of the time no matter how hard we try she won’t be talked round and we won’t force it.

For a child who has medical issues is also a bit nerve racking taking out of the country.

I always take a course of antibiotics and emergency seizures meds.

We also get additional insurance to cover her pre-existing conditions.

I believe a little extra planning and being proactive does help make an overseas trip a little less stressful for everyone and I hope some of these tips can help someone else.

Time For The Summer Holidays

Schools are breaking up and the kids are getting excited – or at least some of them are.

The break from routine can be difficult for some kids with special educational needs.

So what is supposed to be (according to the Oxford Dictionary) ‘An extended period of leisure and recreation, especially one spent away from home or in travelling’ doesn’t always feel like it straight away,

Coping is generally more the idea than relaxing during most of the break from school.

Whilst most parents are glad when September comes back around, we find our lot have only just got into the routine of not being at school.

We then have a few weeks where it’s time to adjust back into the old routines again.

It’s often complicated by new classrooms or teachers, or both.

Next term David will be having packed lunch instead of school dinners so we will see how that works too.

But that doesn’t mean we’ve had a terrible break.

On the contrary, it’s about grabbing the moments when they happen.

Finding that period between the adjustments where the kids are happy and then working around what works for them.

Aiming for places that aren’t too busy – even if that means going on the days when it looks like it might rain.

This is especially the case for things like big attractions, beaches or events.

Going away to places where we can have our own space and own catering is really important for us.

Our kids need space to move about as David is very sensory seeking and Anthony’s ADHD means he is always on the move.

Fully inclusive buffet style eating does not work for us as we can’t leave our kids at a table and they can’t carry food.

They are unable to eat a lot of the food available due to restricted diets and we can’t leave them at a table so self-catering for us!

And while we may not seem to spend the whole holiday period ‘entertaining’ the kids and spend more time helping them adjust, it’s still a break from the norm and this in itself is something important for our autistic kids to learn to deal with.

Each year this adjustment period seems either a little easier or a little shorter and the ‘holiday’ period seems longer, and that’s something to be pleased about come September at least.

US Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across America, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out, and not be excluded.

Six Flags

Earlier this year Six Flags Great Adventure, in New Jersey, held a, “Sensory-Friendly Autism Day”.

Designated decompression areas included iPads and the lights and music were adjusted to create a friendlier environment.

Resources and presentations were given throughout the day and, in addition, specially-trained staff were on hand.

The event was ticket-only – even season pass holders had to pay in!

But the purpose of the special day was to educate, fund-raise and introduce families to highly-trained special education staff from the Gersh Academy.


Since 2016, Legoland Florida Resort in Winter Haven, FL has been quietly adapting to become more accessible to families of all shapes and sizes.

One such example is the ‘Hero Pass’.

Guests on the spectrum can get a ‘Blue Hero Pass’, at no additional cost, ensuring the child’s entire group can get accelerated access to some of the site’s most popular attractions.

Those with mobility difficulties can also obtain a ‘Hero Pass’ and everyone can access the extremely helpful guide online to inform them of the most suitable rides.

There are also guides to let parents and carers know what to expect, in terms of noise and lighting, for each ride.

The park even has quiet rooms with sensory toys, noise-cancelling headphones and, unsurprisingly, Lego building tables.

All newly-hired staff, or “Model Citizens” as they are called, are trained to be able to effectively interact with guests on the autistic spectrum and their families.

Throughout April (World Autism Month), Legoland even contribute a percentage of ticket sales to Autism Speaks, and light up certain areas of the resort in blue.

Edaville Family Theme Park

An April 2007 study from the National Autistic Society found that children with autism associate with,  “Thomas the Tank Engine”, more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to the Edaville Family Theme Park which includes, “Thomas Land”, as well as, “Dino Land”.

The Park teams up with local non-profits, schools and programs that help kids with autism to educate and encourage inclusivity.

The site also has a huge Autism weekend for families as well as a permanent quiet cart on one of their trains, as well as quiet rooms and areas for kids to, “run their wiggles out”.

Sesame Place

There was huge excitement in the autism community when Julia, the first Sesame Street resident with autism, arrived on the scene.

Perhaps even more exciting for families with children on the autism spectrum was that Sesame Place in Pennsylvania became the first theme park, worldwide, to be designated as a Certified Autism Centre.

Staff receive training in sensory awareness, motor skills, autism overview, program development, social skills, communication, environment, and emotional awareness.

Sesame Place has a Ride Accessibility Program, matching each guest to the requirements of each ride.

This can also include priority boarding and queuing, ‘virtually’, so they can enjoy other activities as they wait.

The park also provides noise-cancelling headphones as well as access to their quiet rooms.

Low sensory areas can be found around the park in addition to low sensory parade viewing areas and special meet and greets with Julia herself!


Dolly Parton has a long history of philanthropy, with her Imagination Library recently donating its 100 millionth book.

Dollywood, proudly claim their Calming Room, to be the first of its kind in the world.

The room, opened in the Pigeon Forge, TN park in 2016, includes weighted blankets, sensory toys used in therapy programs and softly glowing lights.

The website also includes a “walkthrough guide” helping guests to know what will happen on their visit.

Holiday World

Another location with a calming room is Holiday World in Santa Claus, Indiana.

The room includes beanbag and rocking chairs, a tent and adjustable lighting.

The room can be reserved for 30-minute sessions, ensuring families are left to themselves during their scheduled time.

Furthermore, Holiday World also hosts ‘Play Day’, an annual and exclusive occasion that lets children with difficulties, including those who are wheelchair-bound, enjoy the rides.

Proceeds from the event are donated to Easterseals.

Cedar Fair Entertainment Company

Each of the eleven parks owned by the Cedar Fair Entertainment Company include Ride Boarding Passes for those with issues with mobility or are on the Autism spectrum.

These parks include California’s Great America, Carowinds in Charlotte NC, Kings Island, Mason OH and, the original, Cedar Point in Sandusky, OH.

The parks can also arrange for their shows to provide ASL interpretation, if informed a week in advance.

Alternate entrances can also be provided.


Disneyland and Disney World provide a Disability Access Service Card. The DAS card allows those who are unable to queue to receive return times for rides.

Once the guest’s party finish a ride they can obtain another card, similar to how the FastPass service works.

Disney Parks have responded to criticism that abuse of the system was becoming difficult to control and readjusted the system.

Additional resources and information packs can also be provided.

Morgan’s Wonderland

While all the parks mentioned above have made leaps and bounds to become more inclusive, Morgan’s Wonderland is the only theme park specifically designed for children with special needs from the ground up.

In 2005, Gordon Hartman sold his businesses in order for him and his wife, Maggie to focus their time and efforts into The Gordon Hartman Family Foundation.

In 2010 they opened Morgan’s Wonderland, named for their daughter.

It offers free admission to guests with special needs and is entirely wheelchair-accessible.

Even the water park extension, Morgan’s Inspiration Island, offers heated water and waterproof wheelchairs and wristbands.

Next to the park you’ll find The Academy at Morgan’s Wonderland, a school for students with special needs that the Hartmans opened in August 2011 which helps students from 12 to 24 to reach their full individual potential.


*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

Road Tripping: What We Have Learned From Our Family Vacations

Summer is here, and school is out; it’s the prime time for family vacations.

Travelling with kids is always an undertaking but taking a trip with children who have a variety of medical and behavioural needs can be just plain daunting.

Some of our trips have gone smoothly; some not so much, and there are many things that I’ve learned from our experiences.

Road trips have been our preferred method of travel for years for a variety of reasons; number one is that I can envision us ending up in the news as one of those families who had to be removed from a flight due to an unruly child.

We had an episode over a decade ago on a cross-country flight with our oldest son where he screamed in his seat for most of the flight.

We have since had three more children; two of whom have sensory and behavioural issues, and the thought of having to manoeuvre them through the strict TSA security, let alone potentially deal with epic meltdowns at thirty thousand feet makes me a little queasy.

So when we want to get away, our minivan gets us where we need to go!

The minivan also allows us to bring a weeks supply (or more) of our daughter Lilly’s nutritional formula without having to worry about it getting lost en route to our destination, and any meltdowns to be had can be calmed and comforted without the usual side eyes and dirty looks from judgemental strangers.

In addition to Lilly’s formula and tube feeding supplies, we also have our son Chance’s trach supplies and his cumbersome suction machine.

I would rather stash those on the floor on the minivan any day than have to haul that load across a busy airport.

Regardless of the method of travel, I have found that planning ahead is imperative.

I start making my packing lists about two weeks ahead of time, and I also keep a copy of the list in one of our bags so I can check that we have everything when it’s time to leave.

We have to pack a little more than most with all of our kids’ medical equipment, supplies, and medication, and I don’t want to realize halfway to or from our destination that we’ve forgotten something crucial.

I also pack a car-sick kit into our medical emergency bag, plus some extra trash bags and towels for easy cleanup. We learned the hard way how necessary this was after an unfortunate projectile vomiting episode on a remote stretch of road, with the nearest gas station more than 20 miles away.

That was the last time I tried to do a tube feeding in a moving car- lesson learned!

We’ve taken to splurging on hotels that have in-room kitchens, so we can save a little money on meals and avoid meltdowns in restaurants after a long day on the road.

It’s also nice to have extra counter space to sort out all the medical supplies and prescriptions and keep them somewhat organised (as opposed to rummaging through several Ziploc bags in a suitcase- looking for the one you need that is inevitably at the very bottom).

Additionally, it’s a relief to have space for all the kids to get their wiggles out after being in the car all day.

Having to repeatedly tell them to settle down every two minutes, as we discreetly try to tube feed their sister or suction their bother’s trach tube in a public eating place gets weary very fast.

Lilly has certain triggers that will almost certainly guarantee a meltdown, and while some things cannot be anticipated, we’ve found that the more prepared we are about where we’re going and what we’re doing, the better it is for everyone.

If we are going somewhere unfamiliar, I research all I can about it.

We do social stories to prepare her to ward off anxiety and fear of the unknown.

This helps a lot, but of course, there have been occasions where we think we’ve nailed it only to have something happen that snaps us back to reality.

After a great morning at Universal Studios earlier this year, all heck broke loose when Lilly tried playing a carnival-type game that she just couldn’t win.

Frustration turned into a full-blown meltdown in the middle of Super Silly Fun Land, and we had to pack everything up and call it a day a few hours earlier than we’d planned.

It’s exasperating moments like this that make us question why we take our kids anywhere, ever.

Once some time has passed, and we’ve collected ourselves, we remember that this is just another life lesson.

We learn from it, and we strategize about what we can do differently next time to make it better.

We try and remember that for all the stares we’ve gotten when doing medical care for our kids on the go, there have been many kind words, genuine questions, and encouragement from complete strangers.

So, despite the difficulties, we will keep doing what we do, having new adventures, and keep learning new things along the way!

10 More UK Tourist Attractions with a Changing Places Toilet

So we’ve compiled a list of another 10 UK Tourist Attractions that have a Changing Places toilet.

At least that’s one less thing for you to worry about when you are planning your days out this summer.

1. Kew Gardens

There is lots to see at Kew Gardens and even their tree top walkway is wheelchair accessible.

You can find their changing places toilet by the Brentford gate car park entrance.

2. Alton Towers is one of the UKs best loved theme parks and now not only do they have a full sized Changing Places toilet, they also have a slightly smaller Space to Change facility!

The changing places toilet is located at Xsector and the ‘Space to Change’ is in Fountain Square, both are situated by the main toilet block and are identified on the park map with the changing places logo.

You will need a radar key but you can borrow one from the box office if you forget yours.

3. Tillgate park has so much to offer from miles of woodland and bridleways for long leisurely walks to the Tillgate Nature Centre and Go Ape.

Tillgate has a Space to Change toilet which you can find within the Nature Centre and are able to use even if you are not visiting the centre itself.

4. At Longdown activity farm near Southampton you can bottle-feed the kid goats and the calves, feed the ducks, meet the pigs, donkeys, and alpacas.

You can have a cuddle with a baby rabbit, hold a chick – you may even get the opportunity to stroke a piglet!

Their changing places toilet was installed after a successful campaign by one of our blog contributors, Sarah Brisdion.

5. If you are visiting London, the chances are you will end up on the South Bank, in close proximity to many of London’s major attractions including the London Eye and the SeaLife Centre.

The closest Changing Places toilet is on level 0 at the Tate Modern and is available to anyone who needs it until 10am-6pm Sunday – Thursday and 10am-8pm Friday & Saturday

6. Blair Drummond Safari Park has everything from lemurs and zebras to lions and elephants and you can find the changing places toilet located on Ground Level at the main attraction area.

The Toilet is unlocked by a code, which is available on arrival at the admission office.

7. Sandcastle waterpark is the UK’s largest indoor waterpark and not only has a changing places toilet but also offers Silent start Saturdays with no music for the first hour of operation every Saturday and accessibility evenings throughout the year.

The waterpark has won accessibility awards for the last 4 years and even has its own Facebook page dedicated to accessibility!

8. Colchester Zoo is one of Europe’s finest zoos with over 260 rare species. A registered Changing Places toilet is available in the toilet facilities near the meerkat enclosure.

You will need a radar key although staff at the meerkat hangout can assist you if you don’t have one.

9. Music festivals. – We may have to wait until 2019 for Glastonbury’s return but most of the big UK music festivals now have mobile changing places toilets including V Festival and BST Hyde Park and some of the smaller ones do too.

If you are planning to visit a festival which doesn’t provide a changing places facility you could always suggest they hire a Mobiloo.

10. At Merseyside maritime museum you can uncover objects from the Titanic, find out about life at sea and learn about the port of Liverpool.

The Changing Places toilet is available on the second floor of the museum, adjacent to the ‘Titanic and Liverpool: the untold story’ gallery.

We’re all going on a…SUMMER HOL-I-DAY

You know… that really catchy and somewhat annoying summer holiday 1960’s classic by Cliff Richard – ‘We’re all going on a summer holiday’.

The one I just watched a group of adorable preschool dancers in their little swimsuits and shorts dance to at my daughter’s dance extravaganza…

Well, I looked up the words and here they are:


We’re all going on a summer holiday
No more working for a week or two.
Fun and laughter on our summer holiday,
No more worries for me or you,
For a week or two.

We’re going where the sun shines brightly
We’re going where the sea is blue.
We’ve all seen it on the movies,
Now let’s see if it’s true.

Everybody has a summer holiday
Doin’ things they always wanted to
So we’re going on a summer holiday,
To make our dreams come true
For me and you.
For me and you.


My family and I are getting SUPER excited for our upcoming trip to the States!

We have so many special people to visit, old and new places to see. Only one more week of school left for the girls!

My wise father-in-law reminded me though that it wasn’t going to be easy having all  four girls home for 2 months, ALL THE TIME.

Especially my youngest monkey who is six years old, and needs constant care and attention, and special help with all activities of daily living.

And travelling on a 10 hour transatlantic flight, in fact a short haul and then a transatlantic flight, when you may require oxygen, will need to monitored and need to be tube-fed, and not be able to understand why you are being restrained in a seat for hours on end, is not just fun when you’re an active six year old!

So whilst I agree with most of the sentiment of this song, no more working for a week or two, fun and laughter, and the sun shining brightly, there is ONE thing that is just about as far removed from reality as I can imagine….

No more worrries for me or you.


There is so much preparation, paperwork, packing, sorting out accommodation, organizing, that goes into planning for a summer trip!

And all of that work is infinity increased when you have a little one with complex or special needs- those of you who are in this same boat know exactly what I mean…

Yes- we can’t wait! But I will have to keep my cool and try not to be stressed by all the prep leading up to travelling.

It will be intense. It will be a lot of work.

But hopefully, the kids will stay healthy and we will all manage to unwind, relax and enjoy the sun, each other and good friends while we are away.

Hopefully the walker and wheelchair will make it to America in one piece!

Summer holidays are great, there is no doubt about that-  however a parent’s work is never done.

There will be plenty of worries and little stresses to deal with.

In fact, going away brings up a lot of them for those who have kids with complex needs. But that’s just our reality.

We get on with it, and look forward to making some incredible family summer holiday memories to last a lifetime.

Holidays and Autism

I have gone ahead and booked our first family abroad holiday with a 3.5 hour flight!!

Not only that but I have told Cameron all about it already and the questions have started – thing is we have 370 days to go!!

– What plane will we be going on mum?

– What kind of engine does it have?

– Can I pull your suitcase to the desk?

– What is the rating of the holiday?

Thing is you see we do holiday each year, but we holiday around the UK.

We do log cabin breaks where we have seclusion and space where we can be relaxed and Cameron can be his loud quirky self.

When we go away it’s like military precision and I will show Cameron beforehand where we are staying and what there is to do nearby as I will meticulously plan everything so that he knows what’s coming and what to expect – and this formulae has worked so well for us for the last 5 years.

I’m going against the grain now though; I have started over the last couple of years pushing Cameron and testing his boundaries, at 9 I know he is more than ready.

A first thing first though is our impending two week half term holiday this year.

For the first week we will be taking Cameron over to Ireland to visit his granddad, this is home from home and a lovely easy break for us all which we do get in annually.

It has been a fantastic training method for us to introduce Cameron to flying and the hustle and bustle of airport travelling – the flight is a painless 40 minutes though and in less than two hours we are door to door.

For the second of the weeks though we have our annual log cabin break and we will be travelling up to Kielder Lakeside in Northumberland.

I have had the website up and shown him what’s what and the things he can potentially do BUT and I know all you autism mummies are going to wince in unity at this…


So he is going to have a whole five days with no YouTube, no watching all those kiddies open the kinder surprises or watching Stampy Cat run around Minecraft or video clips of all those people playing ALL the games that we have purchased for him but still prefers to watch others play.

I have pre warned him though, at first he wanted to understand why as with previous cabin breaks we have had internet.

I explained that the area is remote and there is no signal but that there is the hot tub for him to swim, that there is a play station in the lodges and there is plenty of games that we can do as a family.

He seems to have accepted this and is telling everyone, “So, we are going on holiday and there is no Wi-Fi!!”

Ohhh, these 1st world problems we have.

So going back to the abroad holiday, yes we have Wi-Fi and a pool but I will not be making any plans for when we get there – I plan to have another first and try and enjoy a holiday with some suspense and surprises, after all there is nothing that I have put forward to him so far that he has not just got on with and shown me just how resilient kids can be.

Try it, plan something and tell them, “It’s going to be a surprise and a little different!”, just take their toy/tablet/comfort.

Start off small and grow your experiences as they grow, you will feel a new sense of release from the autism restraints.