What I am asking for may be impossible.
For my son, many things are – at least for now. He struggles to run, jump and play like other little boys. Communication is difficult and must be learned, painstakingly; it is not instinctual. He faces many challenges, mini-mountains to overcome, every day. Some days, he struggles to function and his pain is tangible to me. But his resilience is my inspiration.
We have learned to accept that there are some things we can change and there are some things that will just be. This is one of the greatest lessons autism has taught me. We keep striving to challenge him, to make him the best he can be. But we also accept his limitations and support him as best we can in the things he finds challenging.
As an autism family, our lives often revolve around anticipating our son’s needs, reacting to his moods, challenges and joys. We are very good at it. His baby sister is just two years old and already she knows the ins and outs of his moods, when she can play, and when she should stay away. We are the only experts in managing him and keeping him happy. Unfortunately, in many circumstances, leaving home has the consequence that we relinquish some of that control, meaning life can become more difficult.
Until recently, when a friend mentioned how a wonderful package holiday had been for her own little boy on the spectrum, I would have assumed that a holiday abroad would be almost impossible. We have travelled abroad before, to visit my mum and dad in France – where every detail of Biggest’s routine can be managed to be as close to home as possible. Even then, the reality of travelling, of preparing, of making everything go smoothly for him – it is exhausting. Often, it takes him a long time in a new place to start being our little boy again. And it takes us weeks to recover from the strain of the journey and relax too. Not only this, but we were able to take a car full of familiar things – his own plates, bowls and cups, his own duvet and pillow. On a traditional package holiday, we would be extremely limited in the physical objects that we could bring to keep his routine constant.
With that in mind, many of the things on our Autism Family Travel Essentials Mood Board will not take up space in a case – but they are the essential ingredients to making an almost impossible dream become a reality for us.
Our Mood Board is interactive. Click on each square to view our autism family travel essentials:
Biggest is curious and imaginative, just like any 4-year-old.
But the world can be a painful and chaotic place for him. He can lose himself in that chaos.
At these times, he needs home comforts – objects that are familiar and safe for him.
He also needs time, and a quiet space, so that he can self-soothe and come back to us.
For most families, electronic equipment like tablets, mp3 players and smart phones are a luxury.
For Biggest, these objects give so much more than entertainment. They give him the ability to cope, predictability in unpredictable places. They give him peace.
Many autism families add chargers and wifi to the list of things that are absolute essentials.
And, as mummy is a blogger, they have become essentials for her too!
PEACE OF MIND
Like any parents, we struggle when leaving Biggest and Littlest with other people. It means we rarely get time for ourselves.
This is a worry for all parents, but when your child has autism there are further complications.
Not only would we have to completely trust anyone supervising him while travelling, we would also have to feel assured that they understood his needs.
His severe rigidity of thought means that sometimes, even we struggle to know what might cause him anxiety. We need peace of mind that our children are safe that we will be contacted if Biggest is distressed.
On some days, we go on adventures and everything goes perfectly. Biggest is happy. Nothing unpredictable happens. We can visit places and eat out.
On other days, we may have to abandon plans at a moment’s notice. We may have to leave a restaurant, get out of weather that Biggest has become sensitive to, or simply get him to a quiet place.
This makes travel particularly difficult, as circumstances can often mean we only have so much control.
The ability to change – to have food in our room if a restaurant is too much, to leave an activity and try another day if Biggest can’t cope – these things are essential to travel success.
There are certain things that Biggest needs to feel safe.
Essential to his routine is his own space – a room where he can be alone but with us very near.
Sharing a single room as a family of four would be very difficult for us, as it would completely disrupt Biggest’s sleep.
A joining room would be ideal, as it means he would have safe place to make his own and we could keep his bedtime routine identical to home.
Every member of the family loves music.
Daddy plays the piano, Littlest loves to dance and Biggest uses the sensory stimulation and predictable nature of well-known songs to feel calm and safe.
Wherever we go, headphones and music players come with us.
Mummy loves nothing more than lounging in the sun but Daddy and Littlest love to hike and swim and run.
And even though Mummy and Biggest may be a little more reluctant and struggle to keep up sometimes, often we enjoy these things more than we would think, once Daddy and Littlest have shown us the way.
Keeping active and exploring are essential parts of what makes travel fun for us.
Like lots of children on the spectrum, Biggest can be hypersensitive and hyposensitive to sensory stimulation.
Sometimes he needs quiet. Other times, he needs light, pressure and noise to help him cope.
We take objects like his weighted blanket, sensory lights, and fiddle toys wherever we go.
Routine is king. It can mean the difference between the failure and success of a trip.
When we leave home, we give up the ability to keep to many routines.
It means we often have to leave the house with lots of extra objects – special cups, blankets, certain books.
We know Biggest’s routine inside out – and we take as much of it as we can wherever we go.
Until recently, Mummy was an English teacher. Daddy teaches politics. Learning is at the centre of our lives.
Travel and education are synonymous for our family. To explore, to see the world – it is all about opening your mind to new ideas and new things.
When your child craves familiarity, this can be hard to manage, but we are determined to to ensure that our children still benefit from the wonderful learning experiences that travel has to offer.
Parenting is tough. Managing a child with special needs can be extremely challenging.
One of the biggest problems with travelling, especially in order to go on holiday, is that it requires a huge effort on our part to make sure things go well.
Relaxation has not been in our vocabulary for a very long time.
If there were a way to lift that pressure, even for a few hours, it would be more than a holiday; it would be a true gift.
Biggest’s behaviour can seem odd to others. We often get stares, sometimes even tuts and the occasional comment.
People perceive that he is misbehaving, or that we are indulging and coddling him. In fact, we are just helping him get through simple things that he finds extremely challenging.
What we really crave, wherever we go, is understanding and acceptance.
If the staff and other visitors at the places we travel to make us feel accepted, it is like a pressure has been lifted and we can truly enjoy ourselves without fear of judgement.
Littlest is a free spirit.
Sometimes she misses out on adventures because her brother gets overwhelmed.
On good days though, she gives him the confidence to try new things.
As much as we want to protect Biggest, we also want to keep trying things, so they can have adventures together.
Biggest likes to do the same things – over and over and over again.
He loves his tablet because the games and videos on it are always the same. They are reliable.
Often, when he is in a new place, he likes to play repetitive word games to feel safe.
Luckily the only equipment that we need for these games need is our imaginations so we take them with us wherever we go.
Time as a family. Time as a couple. Time to relax.
If we could turn back time to our last real holiday abroad, we were much younger, bright-eyed and well-rested. We drank wine on terraces and enjoyed each other’s company.
If we could capture those times again, even for a short while – that would be the ultimate holiday.
We love to be outside. It can sometimes be a challenge, but one that is always worthwhile.
Watching our children play, grow and learn as they explore nature is one of our greatest joys in life.
Different landscapes and the new adventures to be had in them are the best parts of travelling anywhere.
I have learned to accept that the path my son is on may be different to his peers. As a family, we have grown and adapted to his needs, to the conflicting needs of both of our children. If acceptance and resilience are the gifts that autism has given me, then that is the greatest challenge; trying to balance the needs of my feisty and adventurous daughter with those of my cautious and anxious son. It is a tall order. A family holiday that achieves all the things in our mood board would be a taller order still. But I believe it is possible. And, if Mark Warner could make this dream a reality for us, they would be giving far, far more than just a holiday. They would be giving us hope that we are not alone, that there are those who would strive to help us, hope that society can and will be totally accepting of the quirks and needs of both of our children.
And you can’t put a price on that.