Saturday, 24 August 2013

This is My Child, This is My Star

I am writing this post for the Mumsnet #Thisismychild campaign to raise awareness about the issues facing parents whose children have special needs, and myths about disabilities.

This is my child, This is Star.


It is her eighth birthday today and here she is stuffing her face with pizza. We had considered a birthday party for her but with her birthday being in the summer holidays she rarely gets anyone turn up anyway. We did send out invitations but only one friend replied. So we treated her to pizza and ice-cream at Pizza Hut and then a trip to the Build a Bear shop for a brand new bear. She said it was her best birthday ever.

I say that she doesn't have children turn up on her birthday because it's in the middle of the school holidays and that is probably true, but also probably true is that she doesn't really have friends. She finds it difficult to relate to her peers, she is immature and lacks social understanding. This is because last year she was diagnosed with high functioning autism. She can talk and walk and do most things other children can but she also does things that children her age don't do, like flap and spin, talk about things no-one really understands, makes noises, and almost always has something in her mouth, in the picture above it's pizza but usually it's her fingers or her clothing, or even her toes if she's lying down watching tv!

 She doesn't like flashing lights and cannot bear strong smells or some textures

She doesn't sleep properly, she gets upset at changes to routine, she has poor bowel control and finds it difficult to empathise with others. 

Sometimes she refuses to speak to people.

Sometimes you can't shut her up.

I don't know what the future holds for Star but she does have an older brother with similar symptoms and I know life hasn't been easy for him or me. At eight she is entering the realm of her peers realising she is different, if they haven't already.

As well as the autism Star also has Hypermobility Syndrome which means her joints are very flexible and cause her pain. She has suffered with joint pain since she was born, only we didn't know what it was at first. At one point the doctors thought it might be juvenile arthritis, but then she was diagnosed with hypermobility, and because of the pain hypermobility syndrome. She is now waiting to see if she has type three of the syndrome which is the genetic form. She has a lot of pointers so I think that she possible does have it. This could have further complications for her future.

Recently Star managed to damage her neck. One of the discs has rotated causing her neck to bend to one side. She was admitted to hospital but they had trouble finding a suitable cure at first but now we are going with a neck brace and regular physiotherapy. It could take months to be corrected. It could happen again in any of her joints.

Star is an amazing little girl, she is very rarely naughty, doesn't like making a mess and is able to occupy herself for long periods. She is very loving, although the cuddles and kisses have to be initiated by her, they do come sometimes. She is also very bright and can read and write with no problems and has a great imagination. She has a very logical way of thinking which can be both useful and a hindrance depending on the situation. 

She has a very special relationship with all her siblings (apart from the Little Man, who she has difficulty with probably because he is so young) She can be a bit bossy with Boo, her slightly younger sister, but they have a friendship that will see them through life. 






8 comments:

  1. She sounds like sucj a sweet girl. Im glad she had a nice birthday, mine is also in the end of school holidays so my parties were never that popular but having a big familiar helped solving that problem. All the best to the birthday girl.

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  2. Happy birthday to the birthday girl :) Hope her neck is doing better.
    My boys have never been great with birthday parties, and we've only celebrated with "real" parties twice in 8 years... I find it hard not having a party (in my thoughts. in reality its much easier and cheaper), but I guess it is what it is, so we have a birthday ritual of our own, that has to be repeated every year exactly the same.
    And pizza obviously is a big part of it :)

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    1. Thank you. I am thinking of ditching the parties, they can be fun but I know Star finds them stressful whether they are hers or her siblings. Maybe it's time to think of alternatives every year.

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  3. Thanks for sharing. I hope her neck is getting easier. You highlighted a future fear for me, birthday parties and friends. I worry about what will happen in Ethan's future, will he have parties? Will he get invited to any? When I think of my parties they were only small, sometimes a cinema trip and I was alright :0)

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    1. Star hasn't been invited to party since she was four now :( She does still have some special friends though so it's not all bad.

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  4. this is a lovely post! So similar to J in many ways (especially the birthdays - one year he literally invited the whole school but only got one invite back in return) and yet so different in other ways (J loves to make a mess!). I am so glad she had 'the best birthday ever' and it sounds like she has the best mum ever so i'm sure the future will be great for her with such a loving and caring mum. xxx

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    1. Thank you. I think most mum's experience the no replies to invitations at some point. It gets easier when the child gets older and can actually ask their friends themselves so it's not down to the parents.

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