“So how do you entertain an autistic child on long haul flights when they have limited expressive and receptive communication skills?”

A little while ago, I asked my Instagram followers to send me any questions they had regarding travelling when a member of their travel party is autistic.  This one really hit home, as it is something that I have been adapting and refining to suit Touristo’s changing needs as he develops and grows older.  I answered this via some Insta live posts, but thought I should write some more permanent notes here.  For this post, I am specifically talking about travelling with autistic children, but the same pointers can be adapted for adult travel companions.

My first few blog posts contain some very broad pointers about travelling with autistic children, however I feel this particular point deserves it’s own post because when you are flying long haul it really is where you need to focus the most amount of energy in your planning.  I think I have said this on my site before, but I really don’t find flying with Touristo (or travelling in general) any more difficult than I do with the Princess, but their needs are very different (and this shouldn’t be ignored).  If I chucked a couple of colouring books, some stickers and books into Touristo’s carry on and expected that to entertain Touristo in the same way it entertains the Princess, it would not be an easy, nor an enjoyable flight! He’s just not motivated by those things, and when you are packed into such a tiny space with so many other people, it is not the time to insist he try these activities! If I make the right accommodations though, he is a very easy-going travel buddy.  So how do I entertain ‘Touristo the Tiny Traveller’ on long haul flights?

  • This one is a bit basic, but I do try and travel on overnight flights as much as logistically possible.  I am shattered in the morning because I don’t sleep well on planes, but my children do….. so to eliminate a lot of time trying to entertain the kids, I pick flight times where I think there is a good chance they will sleep.
  • Snacks.  Like many other autistic children, Touristo is particular with food (a trait he shares with his mum).  So I pack all of his favourite snacks – a full tummy eliminates HANGRY.  Now this isn’t rocket science, I know…..but a tip you may not have considered is……..sabotage.  As much as you can, without changing the food so much they will be annoyed is…..make the bits smaller/harder to eat e.g. I chop up fruit salad into teeny tiny pieces which Touristo picks up one by one, thus taking him 20 minutes to eat something that would usually take 5 minutes.
  • Stuff. Touristo likes unwrapping presents. So before we travel, I do a shop for little ‘things’ that he might like and that might entertain him for a few minutes at a time.  I wrap them individually and hand them out one at a time.  This has bought me hours of quiet moments over the years. The sorts of things I buy are all very cheap for example, Disney figurines, sensory gadgets, and just basically cheap (I consider $5 expensive), novel things purchased from dollar stores or Alibaba.com (who have REALLY cheap fidget cubes and spinners etc).
  • Lots of $2 headphones.  This one won’t apply to most people out there, but when I can find something on the in-flight entertainment that he likes, he chews the cord of the headphones.  So I stock up from stores like Daiso, so he has his own and if he destroys them, it doesn’t upset me.
  • Cater for your child’s individual sensory needs. I always take his weighted blanket on the plane, even for day flights because it relaxes him and stops him kicking his legs.  I also take lots of things for chewing, as well as stretchy toys and things that are good for fiddling with.  A lot of the ‘presents’ I take for him, double as sensory things.
  • The good old iPad/tablet.  Goes without saying really that this is not the time to limit access to technology.  If he uses it for 14 hours straight on a plane and it keeps him happy, then “thank you to the late Steve Jobs”.  Some important things I do to the iPad though before travelling are; remove all the internet dependent apps, remove all to the apps that are location dependent if travelling overseas (I am talking about you ABC for Kids), download all of the YouTubes he watches repetitively to YouTube Red so he can access offline, and download as many apps that can be taught through visual or hand over hand instruction.  I know some flights have wi-fi but it is often patchy at best, so please don’t rely on it even if it is advertised as existing on your flight. I also show him the changes I make to the iPad BEFORE we travel.  If he is going to get upset about it, I want him to do that at home not on the plane.

Now these are things that work the best for Touristo.  As we all know, what works for one autistic person, may do nothing for the next….for example, these things would not have worked for me as a child but give me a few packs of post it notes to fold into paper cranes, and a packet of straws to chew and I would have been fine. But they are ideas meant as a springboard to start thinking about what might work well for your family.  Try to get into your child’s head and think about what might work for them.

Comment below if you care to share what works for entertaining yourself/your child on long haul travel.

Why I will never ‘grieve’ for my son being autistic

On his way…..

I can honestly say I have loved Touristo since the moment I found out I was pregnant with him. He was desperately wanted, and from the minute I saw those two lines saying he was on his way, my heart  beat for him.  The only thing I knew about him at that stage was that he was male and that he enjoyed listening to Brian McKnight. Nothing else mattered.

Nice to meet you

So after a lot of waiting and a rough pregnancy, it was time to meet our baby. The labour was very long, and by the end of it I was completely exhausted. Just when I thought I was about to pass out from fatigue, Touristo decided he would grace us with his presence. The moment the midwife gently laid him on my chest was the most beautiful thing I had ever experienced, and I remember sobbing “he’s perfect, he’s perfect, he’s perfect”, over and over. Now to be fair, nobody is perfect but he was just as he was meant to be. In hindsight though he was long and skinny, covered in vernix, his skin was a weird colour……but he was mine and just as he was meant to be. By this point I hadn’t slept in over 2 days and I still couldn’t sleep now because I was so enamoured.

I had just birthed my very much wanted child. He was perfectly healthy and he was mine. I had never felt love like that.

Growing bigger

Right from the onset he had issues coping with the world from a sensory perspective. He needed to hear the steady rhythm of a heart beat to help him sleep. He needed to be swaddled to relax him, and loved touching and mouthing everything he could. But when these needs were met, he was the happiest, sweetest, gentlest baby on earth. It was like someone took all the extra happiness and light in the world and put it in this child, and this light shone out his big, saucer-like brown eyes.

As he grew older he continued to to be this most amazingly gentle, sweet boy. He also wanted to learn everything about the world around him all in one day. He was clearly very bright and inquisitive.

Eventually, we noticed differences in communication and other areas and sought out hearing tests, a speech assessment and a Paed. At this stage we were told he had a moderate speech delay. It wasn’t until a year later he was diagnosed with autism.

Hello autism

Touristo was diagnosed just after his third birthday. The Princess was only a few weeks old, and I remember having her in a baby sling during this appointment. The diagnostician delivered his diagnosis in a way that oozed sympathy, you know……the way you deliver really horrible news. Only, I didn’t think it was horrible. I had answers. Understanding what was going on for him allowed me to make adaptations so he could reach his greatest potential. Because of these answers I would also be able to make adaptations to my parenting that were more fair, helpful and respectful. I wasn’t a failure as a parent, I was just parenting the wrong way for him.

I initially sought refuge in parents’ forums where I was continually encouraged ‘to grieve for the life and child that I would never have’. I found this jarring. What the actual……? My son had not died, he was healthy and exactly as he was meant to be. He was still entirely that same person who nearly burst my heart open with joy the moment I met him. How could I ever, ever grieve someone so amazing? As for grieveing the life that I had planned out in my head …….as I said, the only thing I knew about him during pregnancy (which was when I fell in love with him) was that he was a boy who liked listening to Brian McKnight. Nothing else about him had been planned out beyond that, nor did anything else matter! You take life as it comes to you.

Back then I was a newbie to this world of severe autism and thought maybe I was the crazy one for feeling this way…….but I have now had a few years to mull over these thoughts and am now crystal clear. It is still something I could never do and here is the bullet point list why:

– why would I grieve someone so awesome. Grieving is for when something awful happens like a death….. nothing about Touristo is awful.

– his feelings! I imagined how I would feel growing up having a parent who was so devastated because of the way I am.

– the day he was diagnosed he was still the same awesome guy that I was so in love with the day he was born. I just had new information to help him.

– I am an aspie and know how it feels to be very different and not fit in, especially as a kid. I imagined what it would feel like having my mother grieving for the parenting experience she didn’t have. Kids pick up on that even if they have no words.

I think oftentimes the whole grieving thing is set up around the stage of diagnosis, and whether the diagnosis is presented as something terrible, neutral or good. Diagnosticians have amazing power to use this conversation to set parents up with a much more positive perspective on autism which is empowering for parents and can only lead to positive outcomes for the child.