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.
arty has gone instead, with the kids. Barney was fine about the trip being cancelled. Then when Marty said he would take him instead, he was excited. But excitement often leads to anxiety attacks. After getting dressed and ready to go Barney started to feel sick and panicky and decided that he couldn't go after all. For some reason the wind outside seemed to be bothering him too. He begged not to go. I wrote him a page out about the days events, and we drew pictures of all the exciting things he likes at W5. But still he did not want to go.
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.
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.
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.
a big glut of blackcurrants and raspberries from our garden today. The vegetable garden that I cherished and tended to before we went to America is a big patch of weeds now, save for some lavender and an overgrowth of mint. But we do still have raspberries, blackcurrants and redcurrants growing in abundance out there. The only problem is, that to pick them one has to trample through 4ft high weeds. It happened to be raining when I had a spare half hour to go outside, so I stood in the pouring rain with Barney, harvesting our fruits, so that I could use some of them to make baby food for Rosie. Marty is going to make a fruit crumble with the rest. Yum. I think I am allergic to weeds! When ever I do the weeding I come out in rashes. Today, since I was wearing shorts, I came in with itchy rashes all up my legs.
till pondering over it all. He hasn't had too many panic attacks this week. He has grown out of his junior bed and really needs a proper single bed, but we just cant afford one at the moment. Anyway his mattress got wet and I put it out to dry, then it rained on it and so he couldn't sleep in his bed! So we dragged the futon mattress up to his room and made a bed up on the floor. He has slept on it for two nights, but he hasn't settled easily. He has started back to feeling ill and panicky at bed time. His tummy hurts and he thinks he is going to be sick. He doesn't have any clue why it's happening, but I know its just because he isn't sleeping in his normal bed, and his body doesn't like changes.
e is a natural linguist, to which Tarja was very surprised! Badger's report was also good. He attains good results, but almost every single teacher commented that he could do extraordinarily well if he concentrated and got himself more organised. I'm quite impressed that he can do so well without concentrating! Think what he could do if he really knuckled down!
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