Star has had problems with her knees for as long as I can remember. Even as a baby the only way we could calm her sometimes was by massaging her legs, or moving them in a bicycle motion. We thought it was to ease colic, no I think maybe it was leg pain all along. I took her to the GP several times and eventually she was sent to hospital for an x-ray. Nothing showed up but they did say she was hypermobile or double jointed. It was suggested she may have juvenile arthritis but on mentioning this to the GP I was told I would just be following up an unnecessary diagnosis as there wouldn’t be anything they could do for her. Dismayed by the GP I went home, got Star a bottle of calpol and a couple of wheat bags. This helped for a while.
When I started this blog I wasn’t sure which direction to take it. I have a few other blogs, one about my baby, one about my cakes and another more personal one about my depression. Now this blog is becoming established and I’ve decided to use it to take over from my baby blog. One of the things I used to post about regularly there were my children’s disabilities so I have decided to re-blog a few posts from there as an introduction so I can continue writing about this here.
This is a post I wrote last August about Star’s autism.
I don’t tell everyone that we meet that Star has autism. Many of her friends and their mum’s at school are unaware. At the age of 7 (almost) we can get away with it. I tried to get away with it much longer with her older brother but things turned really bad when he was 12 years old I don’t want to make the same mistake.
Star is verbal, intelligent and looks normal. Occasionally she will glaze over and become distant and it takes a while to get through to her but most people will take no notice. Sometimes she gets a little over excited and an a little flappy, not an unusual amount though and again, most people will take no notice. She is un co-ordinated and clumsy, she has a strange gait when walking and running and sometimes performs strange actions. At 7 yrs this is starting to be a little more noticeable but we are still getting away with it.
Star talks out of turn, ignores people, repeats what you say, talks about what she wants to talk about and doesn’t really interact, talks incessantly about the things that interest her, makes funny noises all of which you can get away with at 7.
When do we stop getting away with it? When does it become apparent that Star can’t help these behaviours and is not just immature. Sadly, I don’t think it will be much longer and we have to start thinking about how to deal with it, and make things easier for her.
Star’s older brother didn’t have any physical problems but Star also has Hypermobility Syndrome and weak core muscles. These contribute to the strange way she walks and talks but also affect simple climbing ability. This summer our visits to the park have involved Star’s 5 yr old sister and 2 year old brother doing everything by themselves, while I have had to help Star with climbing things. One park in particular has a slide/climbing frame that you can only access by climbing up a ramp holding on to a rope. While the other children, big and small, were zooming up with ease, Star just couldn’t manage it and I had to give her a shove. Then yesterday we were at an event with face painting and the children were sitting on high stools to have their faces done. Star could not climb on to the chair and the lady who was about to paint her seemed shocked. I helped her up and went back to help her down afterwards.
So, although Star may not have the traits of a severely autistic child, and doesn’t look obviously disabled, she does draw attention to herself.
Do we carry on as though this is all normal? My son suffered terrible bullying and even now I worry if he goes out alone (which he doesn’t do very often.) How am I going to make things different for Star?
I was asked to write a post for Wriggly Rascals, a fabulous advice website. Moira is typical of many mum’s who think there may be something wrong with their child’s development but don’t know whether they should do something about it. I’ve been in this position myself, twice now, I reacted differently each time so hopefully my story will give a view of what you should do if you ever find yourself in this position.
Please take a look at my story on Wriggly Rascals and while you are there you will find lots more interesting questions answered on pregnancy, babies and toddlers.
Motherwell, a frustrated mum of twins Mhairi and Archie to get mums together to
share pregnancy, baby and toddler advice via quick surveys to get the facts
about what other mums do. Our mums pass on loads of great tips to mums who have
asked for help. If you would like some advice, get in touch at
I wrote a post on another blog about a tv program I had watched
about autism. It was in the Extreme Love series with Louis Theroux.
One of the questions that I was faced with after watching the program was would I wish my children to be different. My eldest son has Aspergers Syndrome, he was diagnosed at the age of 12 and he is now 24yrs. My 7 yr old daughter also has high functioning autism, she was diagnosed last summer. They are both verbal and live relatively normal lives. My son is currently in his third year of an accountancy degree. My daughter is in yr 3 and if she does as well as her big brother then I will be happy.
I can ring the changes in my two autistic children’s lives. With my son I found it hard to accept he was different, that’s why he was diagnosed so late. Sadly we got to the stage where I had to cry for help, even though it had been offered to me before and I’d rejected it. The most difficult years were from where my husband left us (my son was 9yrs old) to mid teens (about 16) My son was hard to control, violent, angry, un-cooperative and generally difficult. He couldn’t understand what was happening and neither could I. I didn’t handle any of it very well and I’ll put my hands up to that. It’s not been plain sailing since then, but things have improved and mostly my son is a wonderful, caring person. He’s different, yes, but he’s a good person who is trying to find his way in a complicated world. We are getting there slowly, I just hope he makes it. I used to fret that he didn’t have girlfriends, or even friends. I worried that he would never find a job. I accepted that he’d probably be living at home for all his life. Sometimes I see a glimmer of hope, a sense of change, a wistful thought that maybe things will be different for him in the future. Would I change him?
My daughter is about to face her most difficult years. Being in mainstream school with other children emphasises her differences. I hate seeing her sad because she doesn’t understand the rules of friendship. I know with a sinking heart that life is just going to get harder for her. The choices I face are keeping her in a mainstream school or finding her somewhere else to continue her education. With my son Mainstream didn’t work and he was transferred, it took a look time for him to catch up with his education but he persevered in the end. He did, however, find life much easier in his new school.
So would I change her?
Such a difficult question and one I can’t really answer with conviction. Yes, of course it would be easier if my children did not have autism, easier for me and for them. Life can be difficult for autistic children and adults, but hopefully with more awareness the future could be better. It would be nice to think my children will lead lives just like anyone else, get married, have children of their own, have jobs, all the things other people do.
Yet, I love my children just as they are. They are difficult at times but mostly just a little different. They are still my children and I would feel like I was betraying them or letting them down if I wished them to be different. So my answer would have to be, no I wouldn’t change my children, but I would do anything to change other people’s negative perspectives of them.