Sunday, 12 July 2009

Do you like my green ear muffins?

I have to start this blog post off with this gorgeous pic of our Rosie wearing her Daddy's American bandanna. He wore it all around the states on our trip, and now it seems she is following in his fashions. Cute.

Well, it's be an adventuresome week at our place. Barney's ear defenders arrived in the post and he was delighted with them. He has worn them a lot and they seem to give him some comfort even when noises aren't a problem. For instance, he dropped a big glass bowl on his little toe which was cut open and badly bruised. He was in agony, poor lad. He was so nervous about me putting a plaster on it in case it hurt when I touched it, so he put on his ear defenders (or ear muffins as he calls them!) and closed his eyes whilst I fixed his toe up.

Once he was used to wearing them he decided to brave the cinema to watch Ice Age 3. Daddy took him. The last time we took him to the cinema he spent almost the entire film in the toilet in a right state. This time he adorned his trendy ear muffins and bought a ticket. The second the ticket was bought he started to panic. Marty bought him some pick'n'mix to tempt him further into the building. They got past the tills up to the cinema foyer and he started to panic and begged to go home. Marty spoke to one of the staff and asked if he could go into the cinema and check the place out before deciding whether to stay or not. Anyway, to cut a long story short, they made it into the cinema and Barney sat with his 'muffins' on, on the edge of his seat for a good half an hour before relaxing into the film. He did it in the end, but it wasn't without a lot of stress and upset.

Speaking of the ear muffins, here is a photo of Barney wearing them at the Ulster Transport Museum. He loves to go there. We used to go every week or so before we started our travels. But we haven't been since almost a year ago when we took Neil there. Emily was only a bump then. So he was very excited about going there for the day again, and even more excited that our friend Jools would be joining us.

So Barney, Jools, Rosie and I all had a fab, exhausting day at the 'train museum'. He barely needed the ear muffins as it was pretty quiet there. Poor Jools was shattered after Barney had her racing through trees, up and down hills. Jools was absolutely fabulous with Barney and he made a friend for life. He told her 'you're my new best friend' and he didn't leave her side the entire day. Later that night he asked me "is Jools my friend now or is she still your friend?" Bless. He has made Jools promise to come to the Aquarium or W5 with us while she is off work. It is so great for Barney when someone takes a real interest in him and doesn't get fed up or annoyed at his constant chatter.

The summer holidays are well underway here and are already proving to be a very stressful time! Having four kids around 24 hours a day without a break gets tough at times, although I still insist that I love the summer holidays. Still, a teenager, preteen, a 5 year old and a baby make for a lot of hard work. And a lot of good times, laughs and precious memories.

I've been quite surprised by the reactions we have had to Barneys possible Asperger diagnosis. I'm not sure whether some people see it as an undesirable way to be, or whether they think that Aspergers doesn't even exist, but it is interesting and sometimes upsetting to see how people respond to Barney and Aspergers. Some people quite obviously think it is just a label we have chosen to endorse on our son to mask his bad behavior. Others seem to be conveying (from their sly, condescending looks, that he must need a good smack or some hard disciplining. When Barney announces 'I am wearing these ear muffins because I have Aspergers and I don't like loud noises' some people have tried to convince him that there is in fact nothing "wrong with him" and perhaps he will outgrow it or is just nervous/shy/anxious or whatever.

It makes me quite cross when often these people don't see Barney's severe panic attacks. They don't live with him 24 hours a day, and some barely know him, yet they feel free to pass judgement and tell me (or him!) that its probably nothing. Most of these people have absolutely no idea what Aspgers or an ASD is, yet they feel they know enough to tell me that I shouldn't worry too much about it. This 'Aspergers idea' is not something that Marty and I have pulled out of no-where. It has come from over 5 years of knowing and loving our son, long in depth talks with teachers, and Occupational Therapists, and consultation with our GP, not to mention the reading of countless books on the subject over many years - not just recently. No he doesn't yet have a piece of paper that says 'this child officially has Aspergers', but there is no doubt about it. The truth is that if you know Barney and you think theres nothing amiss, then that is more than likely because we take jolly good care of him and have always tended to his special needs and issues without having had a label of Aspergers. Many family members have commented over the years that 'Barney is a difficult child', or 'Barney is hard work isn't he?' We do many things to make his life easier, and ours, that we have been doing since he was two years old.

I have noticed that some family and friends have been compassionate to Barney recently and have taken the time to try to understand how he thinks. I can't thank these people enough, as their thoughtfulness and kindness, patience and tolerance has made a huge difference. At the moment every day has huge difficulties and to be honest some days are just extremely tough. When people take Barney aside and spend time with him, comfort him, or just listen and try to understand, it makes every ones life a hell of a lot easier, and happier.

Speaking of which, last night we had a family meal at my Mum's house. Mum always puts on a good spread and the company is great. But with seven children, a crying baby and two dogs running about the place it was a noisy event with lots of hustle and bustle. Several of the adults had trouble coping with the noise and excitement. So imagine how much harder it must be for a 5 year old boy who is extremely sensitive to noises and strange or new situations. Barney spent the entire day building up to our trip to Nanny's feeling sick, worried, anxious. He didn't want to go. It was too much for him. But we went, and he had a lot of fun with his cousins. However, late at night after all that noise, food and excitement both he and Rosie got overtired and wrung out. By 8pm Rosie was desperately tired and needed to get home to bed. She was crying, and Barney was panicking. In order to leave I had to chase him, panic stricken, around Mum's kitchen, begging him to put his shoes on. After we finally left I spent another few minutes chasing him around the garden trying to get him into the car. He wouldn't get in because Rosie was crying, and even with the ear muffins on he couldn't bare to be trapped in a moving vehicle with a crying baby. I almost had to restrain him and shove him into the car against hill will. It is very upsetting for a mother to have to do such things to a panic stricken child. It is not easy. And it is not a case of a spoilt brat needing a good slap either!

Well, rant over. I guess I'm just starting to see some peoples prejudices against Autism. I guess there will always be people who feel it is ok to laugh at a child and mother who are in distress and just trying to do their best. Or to make uneducated, naive comments to us both without any idea of what they are talking about. Thank goodness that there are some wonderful people who truly care and understand and at least try to help. Thank you to those people. You really do make a difference.

5 comments:

Tammy said...

Yes sadly, there will always be those people that make rude or naive comments. Michael is now in a wheelchair, and probably will stay in one (still awaiting his diagnosis) On our vacation, we went into this small bookshop. The lady there asked Michael how old he was. She said, are you 7 or 8? I told her he was 11 and she proceeded to say "oh, well I couldn't tell from the height" Yes lady, he's in a wheelchair and can't stand up! ugh!!

You and Steve really are doing a great job with Luke. Over time, you'll get more help, and will learn how to deal with every situation, as it comes. He is one of God's special children, and you were chosen to be his special Mummy!!!

Steve said...

All five year old children are a little naughty sometimes and Barney is no different, but what is going on with little Barney at the moment has nothing to do with being badly behaved or wanting to get his own way. The simple proof of this is that his teacher had four sides of A4 pages of worries and concerns about him, but NONE of them were to with bad behaviour at all. Secondly talking to adults (just today) who have the same thing, they say “ that sounds just like me”

Not wanting to do fun things with fun treats does not sound like a bad little boy to me!

Maddi said...

Well, I don't think anyone has a right to pass judgement on your actions or Luke's. Unless they live with him day in and day out, they can't possibly know whether or not Luke has Asbergers or is a "difficult child". But one thing is sure, anyone who knows you as a parent should very well realise that you aren't the sort to try and hide "bad behaviour" behind a label but know that you are both just loving people who want only the best for your children. They should trust that no-one knows your son like you do. I think you are doing an amazing job and Luke is one lucky boy to have you as his parents.

Darwi said...

Well, In my field of work you can find loads of people with that condition. It's so typical. Even one of my working colleagues now has it.
What I'm curious about is is your boy good in math or science. Somehow people with this condition tend to gravitate towards this areas....

Venus Doom said...

Yeah I have heard that too Aleksandra. He is bright at school and his teacher says he loves school work. I dont know yet whether he is going to be really good at maths or science because he is too young to be really studying it at school. He does have an amazing memory, and loves to read about space, the workings of the human body, space travel, the planets, etc. So who knows?

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