ANNE'S STORY

There was always something wrong with my daughter, she was always sick, always struggling to do things that other children did so easily. Everything came late, walking, talking, running, she never climbed, rarely injured herself in the rough-and-tumble of play because there just was no rough and tumble. I remember the first year of her life in particular; she had an antibiotic practically every month. From then on in it was frequent visits to the doctors and hospitals, she suffered especially with ear and throat problems. And the thing was, she was born perfect, a really pretty baby and even won a bonny baby competition once.

 

She was late starting school and when she was six, at her teacher’s suggestion she was assessed. Mildly mentally retarded - cause unknown was the diagnosis. Sure I thought ‘mild’ was, well, mild. I had no idea of what it meant and looking back no one really explained it to me. Or perhaps I didn’t know how to properly assimilate the diagnosis, either way, the term ‘mild’ is a misnomer. I’ve learnt the hard way that when your child is diagnosed as mild it’s only mild in comparison.

 

When Áine was fifteen genetic testing was suggested - now that was some shock when the results came back. Although I had no problem with the test it never ever dawned on me that Áine had a genetic syndrome. It was like someone had taken the ground out from under me. I had absolutely no knowledge, not a shred of knowledge as to what this implied. Again in hindsight, perhaps I didn’t know how to take in what was being said, I don’t know. All I knew was that for fifteen years my child had been ill and now suddenly she was ill because she had a syndrome - that was a very frightening place to be. To make matters worse, no one I spoke to had ever heard of this syndrome. Oh sure, the genetic consultant was able to tell me that she had a deletion on the long arm of her 22nd chromosome and that that was the reason she had been born with a palate problem and it explained all the other more minor medical and behavioural problems too, but what did it mean in real terms? What did the future hold? Did this mean she was different in some radical way? What were the differences? How was I to help her come to terms with this and how was I to come to terms with it myself?  Although Áine has 22q11.2 deletion, she is very self-aware and looking at her you would never know she had a syndrome, but she knows she is ‘different’- when you get to grips with the medical problems you’re then faced with the psychological ones.

 

It was difficult to get her to gain confidence and self-esteem, that’s really, really difficult and with these children it’s so easily knocked too. It’s very painful as a mother to witness this… emotional pain, I suppose is what you would call it, I mean how exactly do you help a child with a learning disability learn self-acceptance?

 

So they gave me a diagnosis and the name of a support group in England, did a few tests on Áine and sent me on my way - I was too much in shock to be angry about that at the time. There’s an enormous expectation on mothers I feel, even now mothers are expected to take the full brunt of the inevitable problems experienced with caring for a child with special needs. You need a team around you really, a very supportive team.

 

It can be a lonely place too for a mother, no one really knows what you are going through, until that is you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience and are struggling with the same daily concerns as you are. In a sense they become your ‘new’ family because of the identification and understanding that you get from each other. Support groups are vital really, they make a difference between feeling hope and despair, between hanging on in there and giving up, they’re a source of life really. It’s only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family. Even my friends to a certain extent have been affected.  All my relationships have been affected.

 

Áine is grown up now, in chronological terms she is an adult but it’s like she has a never-ending childhood. And as for being grown, that just brought a different set of worries, will she get a job, if she does will the people she works with understand her, accept her the way she is, do you tell them? Will she get married - have children? Will her children be affected, who decides whether or not she should do these things? Has she the capacity to decide for herself?

 

Will there be anyone to look out for her if I’m not around, when I die? These are just some of the many questions that crop up over the life span and ones that you don’t naturally think about when your child is diagnosed. I know all parents never really stop worrying about their children but you realise that with a special needs child the problems are ongoing, you never really feel on ‘safe ground’ and the best you can aim for is that they lead as normal a life as possible, with all the uncertainty that entails.

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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