An insight into autism...

I’m writing this post to coincide with World Autism Awareness Day and to give people an insight into what it’s like to go on holiday with a child with autism.

Taking autism on holiday is no easy thing! I’m going to write about a recent family weekend away with my son, Sam, who is 9 and has autism.

Sam greatly anticipated this weekend as he would get to see his cousins and grandparents, however the anticipation is never matched by the reality and inevitably within a few minutes of arriving at our destination, I could sense Sam was stressed. He hovered next to me and asked repeatedly if he could play angry birds on my mobile phone. Sensing this would calm him, I agreed and he sat on the sofa alone, playing the game and calming down.

The cousins’ house was new to us and part way through various renovations. This immediately stressed Sam. To him, everything should have looked like a proper finished, neat house, and it didn’t. Even at the age of 9, he couldn’t understand why things were unpainted, undecorated or unfinished even after lots of explanation. There were also piles of clutter in various places (a relief to me – that I wasn’t the only mum with some element of mess in the house!) but a major stress to Sam. Of course our arrival didn’t help the house to be any more tidy as we had our own luggage and needed to sleep on floors, all of which added to the distress Sam was feeling. I tried to reassure him by telling him that it’s hard not to have a cluttered house with 3 children and that decorating was part way through but he was incredibly stressed by his new surroundings. He kept saying “I liked their old house” and “I’m not saying I don’t like this house, it’s just so cluttered” then repeating the statement over and over – “Mummy, I’m not saying I don’t like this house, it’s just the clutter”…. “So mummy, I’m not saying I don’t like this house, it’s just the clutter”. We were all given one bedroom to sleep in which was great as it was easier to sort out any children who were awake in the night, however at bedtime, Sam was incredibly sad. He didn’t want to come into the room (which had cracks in the walls and half ripped off wall paper), but after lots of encouragement managed to come in so I could help him get ready for bed. He laid down and sobbed. He was emotionally exhausted. He repeated again why he was so upset “So mummy, I’m not saying I don’t like this house, it’s just the clutter”. I hugged him, told him I understood and he eventually fell asleep holding my hand.

(By contrast, my other children had a fantastic time playing with their cousins, not at all concerned with the house or décor – just interested in playing!).

The next day we’d planned to visit a local miniature railway as Sam loves steam trains and was very excited at the prospect of being able to visit and ride on a miniature train. The venue was a huge success – although the weather was freezing – and we all enjoyed riding on the train and then spending time in the park and looking at the model railways that were set up. As the cold got to us and we decided to leave, Sam was sad. Not because we were leaving but because he wanted a miniature railway of his own (he’s constantly asking if we can build one in the garden!). To most children this may be a passing comment but to Sam it presses on his mind for the rest of the day. Something we’d done for him and which should have made him happy, ends up making him sad because he can’t have the unrealistic thing he really wants. He loses sight of the nice thing we’ve done and the enjoyment he had doing it and focuses on the fact that he can’t have a miniature railway of his own. His mood spirals downwards and he then moans for the rest of the day about wanting something he can’t possibly have.

In the afternoon Sam and I went out with my sister-in-law and one of her children. It was calm and peaceful with only 2 children. Sam seemed to love it. The purpose of the trip was simply to look at lampposts – Sam’s other passion! He loves lampposts, knows exactly where they are, which numbers are where and which side of the road they are on. Going to his cousins’ house was no exception. As soon as we entered the outskirts of the town he was commenting on the types of lampposts and was very excited to discover that they were in the process of replacing the old lampposts with new ones! My sister-in-law took us on a mini-tour of the town to include as many unusual lampposts as possible – this was both perfect and fascinating for Sam.

The day before leaving we visited the marina so that Sam could see the bridges he likes there but there are also lampposts which he loved counting. His obsession with lampposts includes having to know how the numbering of them works. He enjoyed figuring out the numbering system here even though the lampposts were on different parts of the marina.

Sam did have fun at the weekend too. He loves playing with his cousins but autism is always there and is always more noticeable at times like this when he’s out of his comfort zone. We know that Sam will be more stressed at times like this and know that he just needs more help, more reassurance and probably more cuddles through the time away than a typical child would. Sam may look and even seem ‘normal’ to other people but autism is always there and impacts the whole family and any family holiday. I hope this helps you see a small glimpse into what autism is like and how it impacts life every day.

Night Terrors

Night terrors are something which affect numerous children including my own son, so I thought this post might help if you too are having problems in this area. My son Archie suffered with night terrors really badly. At one point he was having several every night which was exhausting for all of us. Night terrors can occur when a child is stressed or worried or when there is a change in circumstances (such as moving house) but they can also occur spontaneously.

A night terror is different from a nightmare because with a nightmare, the child wakes up upset after a bad dream & wants to be comforted. With a night terror the child has no idea what is going on. They are effectively still asleep while crying out, screaming, hitting, kicking, biting, being very aggressive, yet have no idea they are doing it. As a mother, the thing you want to do is comfort your child if he/she is in distress. The frustrating thing about a night terror is that although your child is distressed, no amount of comforting will help, and in fact he/she is likely to push you away or become more distressed when you try to help them. The only thing you can do in this situation is try to keep your child from hurting himself/herself. The night terror will eventually stop and it will be completely obvious when it has because the child changes completely. They are no longer distressed, but calm, and confused about why they are awake, and why you are there. They have no recollection of what just happened, and will at that point normally settle back to sleep.

If your child is suffering from multiple night terrors or a night terror every night, I can recommend a solution. Our GP told us to try this and said it was the only thing she had found to work with night terrors. Basically, you wake your child up about 30 minutes before the time they normally wake up with a night terror. Give him/her a drink of milk and settle them back to sleep. This simple technique breaks the sleep cycle and is enough to stop the child entering the phase of sleep where the night terror usually occurs. This worked amazingly with Archie, and we found that he was so sleepy when we tried to wake him that we didn't need the milk to get him back to sleep, he simply fell straight back to sleep again. In fact we often couldn't wake him up but just rousing him was enough to stop the night terrors. After a few nights of doing this, Archie's night terrors stopped. I'd highly recommend this method and hope it works for you too.