Our final guest blog in this series comes from Kirsty, another of our parents, and discusses the difficulties her son with autism faces during periods of transition big or small:
My husband and I consider ourselves hands on autism parents. J was diagnosed at 2 years old with autism. He was diagnosed because we saw it and we made the paediatricians see it too. The process didn’t take long and within 12 weeks from our first appointment, we were told our thoughts were correct.
From that day, and probably during the months leading up to his diagnosis, I read everything about autism. I put my life on hold and we changed from being a regular mummy and daddy to our 2-year-old, and become autism parents. We made sure we could handle the majority of life’s eventualities so that it made J’s (and our) days easier. I’ll admit, before he was given the diagnosis, all I longed for was to hear his voice, his speech: ‘If he could speak, half the battle would be gone’. I remember thinking it and I remembering saying it. This was before I knew the nitty gritty information about Autism Spectrum Disorder. The battle is in the areas you can’t see in a child with autism because they’re not visible. It’s what’s behind their behaviour, reflecting their struggles inside. To an outsider they look like they’re playing you up; to an autism mum, they may be struggling with a transition.
If you shout up to your child “dinner’s ready” the chances are your child will stop what they’re doing, run downstairs and head to the dinner table. If you shout to your child with autism, “dinner’s ready” there is a slim chance your child would do the above. Why? Firstly, they may need to switch off completely from what they are doing and listen to verbal instruction (something that is already hard) secondly, they may need to process your language and understand what you’ve said. Thirdly, they would need to instruct their body to move from where they are, possibly already a very comfortable sitting arrangement, walk towards a table without getting distracted from anything around them and then given your type of table, (high seating chairs, busy, messy table) they need to position their body on the chair without feeling unsupported and then to tackle their dinner. They look down and it’s exactly what makes them feel sick. Given all those areas a child may struggle with, getting them to the dinner table is a big transition. It appears small from an outsider but to another autism parent, they may feel the pain.
This is just a small example of transitioning from one task to another. You can imagine how it can feel when I say lots of children with autism struggle with transitions. There can be so many transitions in a day. Transition from one activity to another. Transition from bath to bed, transition from downstairs to upstairs. They have so many aspects to contend with. You may slowly see how their behaviour may seem impulsive or angry or somewhat, distant.
When we booked a holiday for our wedding this year I imagined clearly how it would be. He would love the pool, love being with everyone. He’ll come back a different child, he’ll pick up so many skills from his friends. We made a transition book to help him with his journey on holiday. It contained information such as the airport, checking in suitcases, the departure lounge, the plane, the coach to the hotel, the hotel, Our rooms, the restaurants and the pools. It contained information on how long we would be there for and we took his monthly schedule to allow him to remove the days he was there to help him with the transition on returning home.
His ‘Holiday Book’ as we called it was made using very simple language and included big pictures. They were velcro backed so we could add them to a daily schedule when we were out there so he knew what his day would contain, the restaurants we would eat in, the pool we would sit by each day and when we would go back to the room. We were very well prepared, like I said, we’re hands on parents. ‘We’ve got this!’ I thought.
The airport journey and plane went as smoothly as they could possibly be. He loves public transport and was happy to be on a mini bus, plane and coach all in one day. We entered our ‘holiday home’ and he seemed excited. He laid on the bed with his ‘Holiday book’ and I nearly cried. I knew my son. We’d smashed it.
The first day was so hot. The kids splashpool was loud, very vibrant and full of spraying water wherever you looked. He appeared happy and then I heard his little voice say “holiday house? Sad.” That was the first of around 200 times he asked to go back to the holiday house. We had friends and family around us and I think for the first time in a very long time, we felt sad too. We spent a lot of time in the room where we allowed him to watch Mickey Mouse. To create some normality for him in this huge transition he had made coming from his home in the structure and routine he had, to a new place that was hot, loud and vibrant. It was the part of the transition I couldn’t prepare him for and a part I didn’t process that he would struggle with. Over time we realised that this was something he needed to teach himself to handle. I couldn’t prepare him for any of the sensory differences for this holiday. If I added a big picture of a sun to his holiday book, it still wouldn’t have given him the feeling of the intensity of the sun abroad. We knew, this was something he would have to learn by himself.
These are the times in life I look back on. When I prayed his speech would come soon it was a drop in the ocean compared to the other areas of autism I hadn’t read about. At the beginning, I didn’t see the struggle he would have, understanding life around him. His desire for things to always be the same; it impacts his behaviour and ability to focus. His sensory difficulties can impact his communication and he just cries. No amount of visual support was going to soften this transition from home to holiday and the sensory input holiday would give. The only thing we could do was to go with how he was feeling.
We gave him everything we could to make him happy which in turn made us happy. We took a backseat at evening meal times and ate in the room. Away from the busy dining experience that he couldn’t handle. We took risks and made choices on how he was that day to push him ever so slightly in situations, and when he succeeded we praised him to the high heavens.
On reflection, we brought our little boy with autism to a different country. Autism comes with several difficulties, transitioning/change being one of them. We did as much preparation as possible, but the holiday was too overwhelming for him. Perhaps we’ll do this every year so that he gets used to the holiday feeling. We could stick to the same hotel every year so he gets used to the holiday, although when we do change hotels one year, what will happen? Or perhaps we accept that this isn’t what our family is able to do right now in our lives. We stick to our UK holidays and perhaps he will have less to contend with. Perhaps we’ll give him a choice of where he wants to holiday. Who knows? What I do know is that every lesson in life is learnt. We still had plenty of smiles, many struggles but that is life as an autism parent family. Just hold on tight because they’re absolutely worth the ride! You can’t see the reason for the struggles. You’d only know about it if you were aware of it.