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Sibling Stories - Saffron

Last Reviewed 27/10/2015

By Saffron, SWAN UK Sibling

Hi, My name is Saffron, my mum is Jennifer, a member of the SWAN UK community and my sister is a 13-year-old swan. I am 18 and currently at university so I was quite young when she was born.

I remember being so excited to have a sister; I bought cards to teach her to talk and I wanted to be the perfect big sister and educate her, almost like a teacher. When she was born mum and dad had to explain to me that this wouldn’t be possible because Jasmine was special. I don’t quite remember exactly how I reacted but I remember being quite sad because I couldn’t do everything I wanted, but once I met her, I loved her. I didn’t care. She used to grip my hair and pull chunks out but I never reacted, never shouted back, because I understood.

One of the sadder parts as a younger child was the impact it had on me and my own development. I never really learnt to swim properly and am still not too confident now because we didn’t take Jasmine swimming as she would just shout and panic a lot. I also didn’t learn to ride a bike until I was about 10-11 because a lot of focus was on Jasmine and what to do. This was because we didn’t have a diagnosis – although she does have GDD she hasn’t been properly diagnosed. All we know is that there is a problem with her chromosomes and she has sensory issues – she always has to stimulated by something.

I was offered a place for the carers programme but to me it wasn’t the same – I wanted family time so this was never something that got worked out and I just lived with it because it was no-one’s fault, no one was to blame for the way Jasmine was, especially her.

As she got older every tiny achievement she made felt as large as a baby’s first steps, every time there was faster walking, new sounds, new signs it was just amazing.

It quickly became apparent that she was incredibly intelligent despite her lack of speech. She completely understood what you were saying to her she just couldn’t reply which I have always thought is quite sad. She would memorise certain pictures and sounds and learn patterns over a period of time just through playing and then one day she was playing twinkle twinkle little star on a keyboard in the perfect notes. She never ceases to amaze me.

Some people think they should sympathise with you if you have a disabled sister and say “ooh sorry” as if it’s a touchy subject or something you should apologise for.

It isn’t. Jasmine makes every day exciting and unexpected even if that means shouting a supermarket down because she wants wrapping paper (which has happened many times).

Although she doesn’t like people touching or hugging her sometimes I have some beautiful moments where she comes into my room and sits on my bed and just admires what I’m doing and looks so intently and the things I do like type on a computer. And sometimes she will come and hug me of her own accord.

To me Jasmine is just a sister, I don’t know what it would be like if she could talk or she wasn’t disabled at all (I imagine her to be very sassy) but I wouldn’t have her any other way.

She is her own person with her own patterns and certainly has a lot of emotions and I love her for her mischievous behaviour and cheeky smiles, and I feel if maybe she wasn’t disabled that she would lose this aspect of her personality.

We're always looking for stories - if you or someone in your family would like to share yours get in touch: info@undiagnosed.org.uk.

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