Fiona Blackley’s story

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Fiona’s story

My name is Fiona Blackley-I’m married, have twin girls who are 19, and Arianne who is fourteen. Arianne has a clinical diagnosis of something called Angelman Syndrome, although in fact it is being shown more and more that she doesn’t have it. She is non-verbal, doesn’t walk unaided, and is in nappies. Her comprehension is minimal but she is very happy. We do not have behavioural issues but she is a full time job.

My other two daughters who are five years older than my disabled child have grown up having a disabled sister. Luckily, they are twins so they had each other, but it has had an effect on them. I get far snappier with them than I would if I didn’t have her or if she was a “normal child”. The future holds a massive impact for them, because they are aware that when I or my husband die or get old they are going to have to look after her.

It is very difficult, unless you have had a disabled child in your life or have had someone with a grave illness to care for, to fully understand what 24 hour care is. I have friends who think ‘oh yes it is like when I had a baby’, but in reality I have been going through this for fourteen years. You are on totally a different life path from them and you know it. They may say that they know it, but they really don’t feel it.

I realised at about six months old that she was not developing properly and that just carried on from there really. It is a horrendous thing to go through. In fact, we reacted as a family by my husband leaving his job in London and us moving overseas to essentially escape for a bit.

After several years living abroad, we decided to move back to the UK. At that time I was basically tapping into everything I could find to support having a disabled child. I came and saw the Challengers centre at Farnham, and I just thought ‘oh my gosh, how is she going to cope here?’ As well as having to accept that this was the type of place she would have to go rather than main stream, normal play activities.

I was greeted by a young man with tattoos, who said he would be looking after Arianne. I just could not get my head around leaving her there with him but I did nonetheless. I spent the whole of that first day watching the clock to get back to see if she was Ok. I could tell that she was happy so I tried it again and again and after a while I realised it was the perfect place.

Now, I could not live without Challengers – It has totally changed our lives. Everyone is so friendly, Arianne absolutely adores going and she has grown more independent through mixing with other people with different forms of disability. We use it all through the holidays, and sometimes at weekends. I can drop her off in the morning and they take her out to the park the zoo, or in the dedicated centre that they are using. Arianne is a child who likes a lot of sensory input and play and has a sense of humour. She gets all that at Challengers.

All the staff at Challengers are wonderful. They are a young enthusiastic team and they have so much energy which they bring to their work. Most people feel embarrassed around disabled children and young people and they don’t truly interact with them, whereas this team of people are just full of boundless energy, smiles, engaging and they really relate to your child.

She is there from 10 till 4 and in that time I can be with my other children, build in things for my husband and myself. We are safe in the knowledge that Arianne is having a lovely time and we can just go and do a simple thing like going for a walk. The difference that just those six hours on a Saturday makes to me and the family is immense.

My life is now entering a new phase through me becoming more involved with Challengers. I am a Parent Ambassador and I also now volunteer in the office on a couple of days during the week. It is not only beneficial for my daughter but I think it has turned out to be very beneficial for me personally in ways I would never have expected at the beginning.

If we didn’t have Challengers, accessible from where we live, I honestly do not know how I would structure my time and life with Arianne. It’s such a part of our lives now that if I had that crutch taken away, of most Saturdays and Holidays, I’m just not sure how we would cope.

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– Fiona Blackley