One of the things we were the most concerned about before we began our full time travel adventure was how Ava would cope. Ava is 9 years old, she is kind, loves to swim and climb, is obsessed with sharks and dinosaurs, a fierce feminist and the ultimate rebel girl. Ava also suffers from anxiety and sensory processing disorder (this post talks in detail about her daily struggles with anxiety). We have never really spoken about her sensory processing issues, we’ve never really felt the need. But we thought it would be a good time to reflect on how Ava is coping with our new crazy lifestyle now that we are 11 weeks in.
Sensory Processing Disorder is a spectrum disorder, each individual presents with differing symptoms. Ava’s sensory issues are defined as ‘hypersensitivity to sensory stimuli’. These are the things she particularly struggles with:
- Ava is scared of surprise touch, and will avoid affection, even with familiar adults.
- Ava shows an extreme response to loud/high/low pitched noises. She will grab her ears and scream. Sometimes the noise doesn’t sound like anything to us, but can seem excruciating to her.
- Ava is very easily distracted, she can seem to be daydreaming or not listening. Often she’s just tuned into something going on in the background, the smallest of things that no one else notices can stop her from concentrating.
- Ava is terrified of crowds and this is when her worst panic attacks present themselves.
- She has a very low pain threshold and over reacts to a small cut, or the slightest drop of blood.
- Ava has a ‘thing’ about fabrics and certain textures against her skin. She is very particular about what clothes she will wear.
- Food is a particular area of struggle, and has worsened as Ava has got older. She prefers very bland food and cannot tolerate strong flavours.
Reading this list now, I wonder how we made the decision to travel at all given the struggles she will face. Was this not enough to put us off? Why as parents would we put her in positions every day where she will have to deal with conditions that will exacerbate her symptoms? I’ll explain…
As her parents we feel our biggest job is to give our children the tools they will need to live a successful, happy adult life. Ava is never going to not have anxiety. Sensory Processing Disorder isn’t something that can be cured. The world isn’t going to be quieter, or less crowded just to suit Ava’s needs. She is in a minority and will have to learn to live with her condition.
We don’t ever want her to feel like she’s missing out on life and all of the opportunities this big wide world has to offer her. We need to give her the tools to get through despite her struggles. We need to show her that she can do anything she wants, never letting anything stop her achieving her dreams.
In Asia the locals are obsessed with the girls. They constantly approach us and ask for photos, and hugs. They also try to pinch the girls cheeks in that weird old auntie way. Firstly I’ll start by saying it is completely innocent on their part (despite the slight creepy awkwardness) they just love blonde, white children. Some ladies in India and Sri Lanka told me it was lucky for them to touch a blonde child as they were blessed. So I know these requests come from a good place. But consent is a huge part of our parenting. If the girls are uncomfortable with something they don’t have to do it. This has always been stressed to them, so they know they can say no and move away. Often people will just carry on and take selfies with the girls in the background. Ava has taken to shouting ‘No’ and putting her hand in front of her face whilst simultaneously pushing Bonnie behind her. I’m really proud actually, that Ava can so confidently say ‘No’ to people.
Even as an adult I am still perfecting saying ‘No’. I don’t want the girls to grow up being ‘Yes’ girls because I know all too well how much people pleasing sucks. So in regards to Ava hating having her personal space invaded, she seems to have learnt how to deal with people pretty well.
Whenever we meet new people on our travels they instantly assume Ava is a boy. They call her ‘he’, they’ll congratulate Will on having a son and a daughter (eurgh misogyny, where’s my congrats I grew them and pushed them out), they say “What’s your name boy?”. I love the look of embarrassment and confusion when I explain that actually ‘he’ is a she who just happens to be wearing a shark t-shirt. But inwardly I worry about the damage this confusion will do to her self-esteem.
Will and I have spoken to Ava at length about this. She said she isn’t bothered about what people say or think when they see her. In fact her exact words were “I’m happy so why should I care what people think I am. Plus when I’m dressed like a boy people don’t bother me as much.”
That made me glad that she’s so comfortable in her own skin, she has the confidence not to care what people think of her. But also the last part makes me feel sick. Sick because she’s right, she does get less attention because people think she’s a boy. People dote upon her “girly” little sister and comment on her beauty. This concerns me lots, I feel this is a whole new topic of discussion for a whole other time.
We have to make sure we are carrying around Ava’s ear defenders all the time. When the noise is becoming too much for her she knows to ask for them and is happy and comfortable wearing them. Although we have had a couple of occasions where security guards have tried to take them off her thinking they are headphones. There have also been days where we’ve left them in our room and she has really struggled.
In Bangkok we visited Kidzania (you can read about our experience here). Ava was really loving the hands on experiences and earning her wages. Until she took part in a fashion show. Being a model earned you the highest wage (ridiculous I know), before she went on stage she told us she didn’t want to do the show, but was going to for the money. For the record we tried to talk her out of it as we anticipated what the outcome would be.
So the music starts, the lights go up, Ava walks onto the catwalk, then sprints into a running leap, resembling a rock star mid crowd surf, diving off the stage and running to William. It was all too much, like we knew it would be.
The stress of this turned into a headache quite quickly, which them manifested into a migraine, as it always does when she has a panic attack. She threw up so Will took her back to the hostel where she slept for the rest of the day and all night.
These attacks don’t happen often now, but when they do it is horrible to bear witness. I think we have struck the balance of being able to anticipate what situations will cause the onset of an attack and how to help her deal with them before it happens. If only she had listened and not taken part in the show, but kids will be kids. She has to learn some of this stuff on her own.
Our worst experience with crowds so far was on the train from Kandy to Nuwara Eliya in Sri Lanka. This train was jam packed like nothing we ever experienced before. Imagine a London Tube train in rush hour, in 32 degree heat, suitcases and backpacks all over the floor, babies crying, people shouting and men pushing past carrying baskets of dried prawns. At every stop no one left the train, more and more people just piled on. It was excruciating for us adults. Now imagine that at kid height, where you head is in line with most people’s groins. It was so horrendous that we spent an arm and a leg paying for a private taxi to Ella from Nuwara Eliya instead of our original planned train ride.
Ava really struggled. She began the journey sobbing because Daddy nearly got left behind at the station. Natalie had to hold her whilst she cried and screamed for Daddy. There were no seats and we were getting crushed. Our ingenious solution was to wedge the toilet door open, chuck all of our bags inside and let the girls sit on the bags.
In short we spent a 3 hour journey holed up in a train toilet. The benefits were space, our own window which Ava stuck her head out of enjoying the views for most of the journey, and water to splash ourselves with to cool down.
Did we feel guilty for putting her through that? Yes, completely. Would we ever get on a train that crowded again? No, it was uncomfortable for all of us. Would we change it? No, Ava now laughs about the journey and loves train rides. Every difficult situation only makes her more resilient and realise that she can overcome her struggles.
Food seems to be the area we worry about the most whilst travelling. Ava will only eat food that is very bland, and she hates rice – which sucks when you’re in Asia and it’s the staple food.
We’re lucky that she likes to eat lots of fruit, and is loving all the tropical varieties on offer here. We manage to sneak some veg into smoothies so it’s not all bad. But it can sometimes feel like she’s eating the same things every day. It’s a battle, but we’ll keep working with her on this one.
At school it was easy for Ava to hide her condition (girls are very good at doing this which is often why boys are more likely to be diagnosed). But out here in the real world, there is no hiding, no blending in and disappearing. She has to face her fears, and overcome the trials of her condition to achieve the things she wants to do.
“It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all – in which case you fail by default.” – JK Rowling
There is never a dull day being Ava’s parents. Some days she is quiet, reserved, helpful. Other days she is a complete whirlwind, tripping over her own feet, being defiant, clingy, needy, winding everyone up and just being a kid. Except having sensory processing issues exaggerates every single little thing that happens during our day.
It’s exhausting and takes so much commitment to support her in her choices and help her get through the day without having a meltdown. But reveling in her delight when she mastered surface dives to collect shells, seeing her in awe at the parrot fish when snorkelling. Answering her questions when we visit temples, listening to her recite facts about sharks and watching her eyes light up when she spotted a blue whale. The quiet pride we feel when she walks across a restaurant and asks for the bill, or plays with local children despite the language barrier.
Every one of these small accomplishments is a joy and a wonder to us and makes this adventure so worth the uncomfortable days that are sandwiched in between the wonderful ones.