Grainne's Story

 

Our Children as Teachers.

 

I have known of 22q11.2 Deletion Syndrome for only 7 years but my experience has been an eye opening one!  I used to get annoyed at the person who was taking too long at the checkout in a shop or the person who didn’t seem to know where they were going and slowed me up in the process or the person who rang me in work (I work in pensions) to ask me what they are paying for, after all I thought to myself “How can anyone not know what they are paying for?”  Then in 2004 I began my journey with 22q and it soon became obvious to me that we are all living with disabilities to varying degrees.  Sure I don’t have the deletion myself, I don’t have a child or a sibling with the deletion but as long as there are people with disabilities in the world can any of us say we are not living with disability? When one sees a person with Downs Syndrome for example, one knows immediately but when the effects of a syndrome are not visible therein lies a challenge for us all. 

 

For me it has meant that when I come across someone taking longer than usual at the checkout then maybe there is a good reason, maybe they have difficulty understanding money and as for the person who doesn’t seem to know where they are going, well maybe they have an invisible disability which means it takes them longer to sort out in their mind how they get from A to B!  As for the person who rings me to ask what are they paying for well perhaps they really do not know what they are paying for and they are not ringing up just to upset the smooth running of my day!  I now know that people with 22q work out things differently to me, their brains are wired differently to mine, they reach their destination using the non-conventional route but they do get there and who am I to make their journey more difficult?  It behoves us all to be aware of invisible disabilities and those with such disabilities have so much to teach us if we let them.  I know my good friend Áine has taught me a lot and I will always be grateful to her for that! 

 

Call us: Anne @ 087 7412856

Registration No. CHY17647

Ireland's National charity for children and adults diagnosed with 22q11.2 Deletion Syndrome. DiGeorge Syndrome and VCFS.

© 2017 by 22q11 Ireland 

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