Tuesday, 23 June 2009

For the first time since Rosie was born, six months ago, I am starting to feel like my old self again. Having a baby certainly takes it out of a woman for more than the nine months that she is pregnant! Rosie moved into her own bedroom this week and seems to be sleeping quite well in there. It is nice to be able to sit in bed with a good book at night again. I haven't done that for so long as we had to keep the room dark for the sleeping littlun.

At the moment I am reading 'The Meaning of things - Applying Philosophy to Life (a great little book that is written in bite sized chapters and isnt hard to understand - so far I have read about death, sorrow, prudence, moralising, tolerance, courage v cowardice and lying - it really is very thought provoking) I am also delving into 'Ten Things Every Child With Autism Wishes You Knew', which is eye opening and enlightening. I've just finished reading 'Can I Tell You About Aspurger Syndrome' which was easily readable in an afternoon. The book could almost be written specifically about Barney. Tarja and Badger are going to have a read of it over the summer holidays. It is a great book for helping siblings, parents, family or friends to understand Aspergers more. I'd recommend it to anyone who's child is affected by Aspergers.

Barney has had a good few days, after the meltdown he had at my sisters house on Saturday. It was Badgers 14th birthday party (I know! Fourteen! How did THAT happen?) so Barney, Rosie and I headed off to my sisters house for some peace and quiet while Marty ran the party here. I knew Barney wouldn't appreciate the noise of the teenagers. So we took a trip to Ikea in Belfast then headed off to my sisters. The second we arrived Barney (being typically outspoken and straight to the point - a trait of Aspergers, so I've read) announced that the house wasn't tidy and smelled bad. He then commenced the cleaning of my sisters kitchen. He washed up the dishes, cleaned the oven, washed the bins and swept the kitchen floor. Barney has always stated the obvious very openly, and people often think he is just rude. No matter how much I explain to him how to be subtle or discrete, he just doesn't get it. I've been reading that this is a very common sign of Aspergers.

Anyway, we had a nice meal cooked by my lovely little sister, and we played with her cat. All was well until it was time to go home, late at about 9.30pm. We packed our bags and headed out to the car, all was well. I strapped Rosie into her car seat, my sister strapped Barney into his booster seat. I turned the engine on and opened one of the electric windows. Suddenly Barney had a complete meltdown. Goodness knows what triggered it? Me opening the window without telling him? The noise of the engine? I've no idea, and nor has he. He started screaming that he had to get out, undid his seat belt, opened the door, ran out into the road, ran into my sisters house screaming that he was going to be sick. He ran into her bathroom and stood over the toilet hyperventilating, shaking and begging me not to make him go back outside.

I talked him down and we went back out to the car. I strapped him in again. Got back in myself. Said goodbye again to my sister. And then the same thing happened again. He ran back into the house and told me that we would have to live at this house as he couldn't get in the car to go home. I asked if he would feel better sitting in the front of the car next to me. I told him we could chat all the way home. He liked this idea and so I moved his booster seat to the front. But as soon he tried to get into the car he started panicking again. Poor Rosie was in the car waiting to leave, and was tired and grouchy. This time I held him and stopped him from running into the house. I didn't really know what to do. I wasn't sure what the problem was or how to help him. I had to almost drag him into the car kicking and screaming. I managed to distract him by telling him step by step what was going to happen - "ok Barney, I am going to strap you in, then I am going to walk round to the drivers side and get in, then we are going to wave goodbye, then we are going to drive home, and we can have a lovely chat on the way home together, then we can tell Daddy all about our day, but then it will be late so you will have to get your pyjamas on, then you will go to bed." I'm not sure if I was distracting him or whether knowing what was happening next helped him, but we got the car moving. He was concentrating on taking deep breaths in and out, and rubbing his legs to calm himself down. I was half scared he would try to jump out of the car while it was moving.

We managed to make it home by me talking to him about all the things we had done during the day. When he was settled and seemed happier I brought up the subject of what had just happened and we tried to figure out together what was going on. He didn't seem to know what had triggered this particular panic attack. He kept asking me 'Mummy, what is wrong with me? Why am I like this?" I felt so torn for him. So I started to tell him how everyone was different and that we all have different ways of thinking or coping with things. I said to him that there are some people who think very differently about the world and explained a little to him about Aspergers and Autism. He had this wide eyed expression on his face the whole time, then exclaimed "Oh Mummy, that's just like me, I must be an Aspergers person!" He had a look of total relief on his face. I almost cried.

So I asked him a few questions such as 'what happens at school that makes you panic?', 'what things happen at home that make you feel anxious?' 'what could we do to make you feel better/safer/happier?' He told me that almost every single day at school he has a panic where he has to tell the teacher that he is going to be sick. He said he feels that way if outdoor play time is cancelled due to rain, if they have to go to the library/assembly/PE, if his teacher is off sick and they have a different teacher, if he has to sit in a new seat or do something new. Basically, he feels rotten if there is any change in plan to what he is expecting. I asked him what makes him feel panicky at home. I couldn't think of any reason myself why he would panic at home. He thought for a while and then said he feels bad if its dinner time and no one has warned him that dinner is being cooked, if he doesn't know what is for dinner in advance, if anyone shouts, argues, or slams a door, if Rosie cries, if he doesn't know what time is bed time, and so on. So I asked him how we could make life easier for him. He suggested that every morning we draw a picture of what will be for dinner and put it on the fridge for him, and that we always tell him half an hour in advance of dinner time so that he is prepared. He suggested that we also show him what is in his lunch box in the morning before going to school. (I notice that on the days his school lunch is a surprise, he doesn't eat it). He asked that I make clock pictures to show the times that different things will happen.

He also said that he can't stand it that everyone lies. "People keep lying to me, I just can't stand it when people lie to me". I asked him who lies to him. "You, Daddy, everyone lies and I don't like it". When I probed into what lies we were telling him it became apparent that they weren't actual lies, but that he often doesn't understand our humour, sarcasm, jokes etc. He takes everything we say at face value (which I've read in this book is typically Asperger). If someone says something daft to him like "I have two heads" he will have to ask if we are joking, and he won't let it go until you tell him that it was a joke.

Our little chat was a bit of a lightbulb moment for him. He didn't want it to end, and seemed relieved and at peace. He asked me to write a letter to all the children in his class saying 'Barney is an Asperger person, so please don't scare him any more'.

Talking of school, I went on the school trip to Cheeky Monkeys yesterday. All in all it went pretty well. Barney was partnered with a girl that he really likes and seems to get on well with. His teacher saved a seat for me near him on the bus, just across the isle from him and his friend. So I was able to chat with him on the way there. He played at Cheeky Monkeys with out any problem at all, which was a relief. It wasn't until it was time to go home that there was any problem. The teacher had told the children where to sit on the way there, and had saved a seat for me. Barney obviously envisaged that everyone would sit in the same places on the way home, but the teacher let them all in willy nilly. I could see through the bus window the horror on his face as he tried to save my seat for me so that I could sit where I was last time, across from him. But some other children took that seat and he was very upset. I got onto the bus and found a seat just behind where I had sat before. But he wasn't happy about it. He started to cry and I didn't know what to do as it was a school trip and I couldn't very well start moving everyone around. The teacher was at the other end of the bus. It made me realise how difficult anything unexpected is for him. In the end the lady sitting next to me swapped seats with him so that he could sit next to me, and he was happy again.

Wow, I only intended to write a short blog post, but I've really waffled on. Today was such a lovely sunny day. I took some photos and video (below) of Barney and Rosie playing out in the sunshine. Lets hope we have a few more sunny days over the summer holidays.

3 comments:

Maddi said...

Wow that's really interesting, enlightening and sad all at once! But I suppose that as he understands how he think better and has people around who can help him to find ways of making things easier, it doesn't have to affect his life in a negative way too much. It must have been such a worry to him that he never really knew about until there was an answer in front of him and he could suddenly identify with himself. Very interesting. Will have to read the Asbergers book too!

crunicorn said...

The bit about you writing a letter to all his classmates really yugged at my heart strings. He is obviously a very intelligent little boy so hopefully between you you can continue to come up with ways to make his life (and yours) easier.
Love to you all.
Cxx

Sharon said...

I bet writing it all down really helps.
I really am happy that Barney has been able to take such comfort from seeing himself as an "Aspergers person." He's such a smart boy. I'm sure he'll gain so much from having such understanding and helpful listening and action plans.

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