Lots going on

It’s Wednesday of the first week back to school for term 2. I’ve had a busy week thus far so I apologize if I ramble as lots has been going on.

Sunday Beth woke up with a crook neck. Of course the sceptic in me thought at first that it was like her sometimes cough when it’s getting closer for school to start again. No, it really was sore. She has terrible posture and very low muscle tone, tending to lie instead of sitting most of the time. When we were at Bec’s last week Beth sat on an IKEA chair that has wooden arms but is padded in the body. It’s called a poang chair. It would be uncomfortable to lie on because of the wooden arms and it’s a little bit bouncy which suited Beth. Bec said her son Will sits on it a lot for similar reasons. After Beth woke up with her sore neck I got very excited, realising that I have a good reason to buy another piece of IKEA furniture now!

On Monday when I was hanging out for some ‘me’ time Beth once again complained of her sore neck. As she could hardly move it I had to get over the fact that it’d be another day occupied with children and make an appointment for her. We go to a great osteopath in Upwey where Beth originally had cranial sacral therapy which helps the blockages at the back of the neck that go to the brain. When we started speech and occupational therapy something had to give as we’re not made of money and we decided to cease the osteo. Also, when trying a new treatment or therapy I like to do one thing at a time, otherwise if there’s improvement you don’t know what did it. The speech and occupational therapy go hand in hand and have different benefits so we were happy to do them together. Anyway, when we went on Monday we got in to see somebody Beth hadn’t seen before called Ben. He was excellent. He did a full spine assessment, commenting on the fact that Beth has such low muscle tone and how her bowel movements were probably not working properly, there was in fact several spots in her back that were tight. He gave us simple exercises to do such as standing on one leg when cleaning her teeth to help strengthen her core muscles. He fixed her neck up with a little bit of massage and even managed to do a bit of manipulation. I was very impressed. The best thing was that at the end when I asked when he wanted to see Beth again he said that she’d be fine now. He said she should be much happier after the treatment and she certainly does seem to be. I’m thinking of taking my Bill there too as his neck has been a bit funny lately.

I went to see the psychologist today to see about the forms I filled in on Bridie’s behaviour. I spoke with Jill about the results which had very high levels in the anxiety fields and the demanding behaviours but fairly normal in others. We did the ‘cars’ test together which shows where somebody lies on the spectrum. The last question was whether I believed that she was on the spectrum or not. I told Jill that my gut tells me no, that I believe she has extreme anxiety but that she’s fairly good socially, she doesn’t have obsessive habits and she could function pretty well at school and even at home at times. Jill agreed with me and when we looked at the cars results it did in fact show that Bridie’s score was 24 and a score of 30 or over shows that you’re on the spectrum. Interestingly enough I had done a similar test on the internet which put me on the spectrum with 34! Jill didn’t leave it at that thank goodness and suggested that I bring Bridie in in two weeks and she does some further assessments. It did highlight to me though how easy it would be to rort the system. When doing the tests at home I recognised where some of the questions would be leading as obviously I had done them with Beth. Things like ‘lining toys up’ which is typical of a child on the spectrum was something that I deliberated over. Yes, Bridie does line toys up at times, but don’t all ‘normal’ children too. I could say yes but I knew it didn’t mean once in a while but repetitively. I could easily have said yes to lots of things and not necessarily been lying. Once Bridie had been seen it would no doubt have been clear that she wasn’t on the spectrum but some things are still based on parents answers. And when somebody has a child of two or three the majority of the assessments would be via the parents. If you knew the ‘right’ answers you could lie about behaviours and get a diagnosis for a younger child fairly easily. I guess it depends on the parents and their honestly. Sadly I have met people who are desperate for a diagnosis for their child, whether it is in their best interests or not. My friends and I have often discussed this and asked “Why would they want a child with all these anxieties and difficulties?” The only answer that keeps coming back to me is that they don’t want a child with these problems, they just want people to think that they have.

Beth was very excited when I picked her up from school today. Not only had she gotten an award but she got to pick a prize and she had chosen a Glee CD. The award is for her house which is called Cowan House. All the awards have written on them “In recognition of their Confidence, Persistence, Organisation and Ability to Get Along Well with Others”. Wow, well done Bethie, what a fabulous award! She is so proud and rightly so. Bill was so jealous when he heard her CD blaring in the car. He’s said a few times how he wished he could go to her high school. It’s nice for the other kids to see that being autistic isn’t that bad after all!

About Sarah

Mother of an autistic child wanting to write about my personal experiences
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