World Autism Awareness Day - insight into Autism...

I can't believe it's a whole year since I posted on my blog! My new post is once again about autism. It's not written to make people feel sorry for me or because I need encouragement - it's written to help other parents of children with autism to know they're not alone, and to give people with no first hand experience of autism an insight into what life with autism can be like. This is written to coincide with World Autism Awareness Day 2014...

Last weekend Sam (who is now 10) went to his first ever sleepover at a friend's house. This was a massive step for him as he generally hates being outside of what he knows and never voluntarily wants to even play at a friend's house, let alone stay over night. However, Sam has made friends with a lovely boy at school, who is very similar to him and sympathetic to Sam's ways. This friend had a party at his house a few weeks ago and after enjoying that a lot, Sam said he would like to go to his house for a sleepover. The time was arranged between us mums and on Saturday afternoon we dropped Sam and his scooter off at his friend's house. Waving goodbye to him was really strange and he looked as if he might cry but managed not to.

The next morning (Mother's Day), we picked Sam up on our way to church. When I first saw him, I thought he looked really tired and when I found out both he and his friend had been awake at 4am, I knew the reason why! Not helped by the clocks changing and having one less hour in bed. Sam's friend's mum said everything had gone well and welcomed Sam to come again anytime. We left and headed to church.

Sam was very quiet in the car and barely spoke despite our questions about how much he enjoyed himself. He almost seemed in shock, which in a way, he was. After church (it being Mother's Day) we headed to McDonalds to get some lunch - this is generally a safe place to get food because all the children like it. Sam remained quiet and kept saying how tired he was. It emerged that having woken up at 4am, Sam was unable to get back to sleep so he simply lay awake until everyone got up at about 7.30. He said he missed me lots - especially in the middle of the night when he couldn't get back to sleep.

The afternoon consisted of the children flopping in front of a film while I did some sewing, and at 5.30pm we ordered food from our local Indian Take Away - my Mother's Day treat! We all ate together having cooked some chicken nuggets for Sam (who doesn't like Indian food) and combining them with popadums and naan bread which he does like. However everything was wrong, the chicken nuggets weren't right, and Sam got upset because he never actually said he wanted them in the first place (we simply cooked them to save him having to decide as decisions cause him major stress). He dissolved next to me in a heap of tears. It was obvious he was just too tired and stressed to cope with even eating so we simply got him ready for bed.

Sam fell asleep almost instantly (even without his prescribed Melatonin!), an exhausted wreck. At 3am he came into our bedroom because he couldn't sleep. He was really worried about going to school the next day and couldn't relax. I took him back to bed and tried to calm him down and encourage him. I said he could listen to his Ipod to help him relax but this only stressed him more because he didn't know which song to listen to, and he felt he had to stay awake to switch it off (the correct thing to do) even though I said he could fall asleep with it on. At 5am I heard loud sobbing. I went back into his room and found Sam in floods of tears - he'd seen the time and realised how long he'd been awake for and now this was stressing him out! I climbed into bed with him and hugged him tight. I told him not to worry about school and promised he could stay at home the next day. Immediately he relaxed and managed to calm down. I said I really felt he needed more time to 'recover' from being away from home and his tiredness. We lay together and chatted about his time away and he finally released some of the details about the time at his friend's house. This seemed to relax him even more. Nothing was bad, it was just all different to normal, and that's what he couldn't cope with. I left him much happier this time, relaxed in the knowledge that he could go to sleep without having to worry about school or being tired at school. I called the school at 5.30am (and left a message) to say he wouldn't be in. He slept until 9am.

Monday was spent relaxing at home, with normal food, drinks, drawing, books, TV and the Wii. He seemed back to his normal self again.

Something that to most children would be exciting, like a sleepover, becomes a massive problem to a child with autism. Being outside a comfort zone can be unbearable. As with everything to do with autism, slow and calm is the way to move forward. By Tuesday, school was not the massive issue it had been on Sunday night/Monday morning, Sam simply needed time...and lots of TLC which I never mind!

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.