Barbara-Anne’s story

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Barbara-Anne’s story

So, there is me (mum), Lucy’s dad and big brother. Her brother lives away from home but has a great relationship with Lucy and without him it would have been hell. Lucy has Angelmans Syndrome and because of that she is very social. To look at Lucy you would not think there is anything wrong with her. It is only when you go to deal with her that you think ‘oh she can’t speak, you walk a bit funny’ – but if she was just sitting there or playing with a group of mainstream children you would never know. Lucy can walk but not that far as she walks with a bent leg and that is very painful for her, it tires her out and she only has 70% balance so you have to be careful.

Lucy loves water, music, drama – if you fall over she will think you are doing it for her. She loves slapstick and anything over animated! Even when you take her to the toilet everything has to be over reactions, such as, ‘oh my god that was fantastic – well done!’ It sounds odd but that is what she likes. If Lucy likes you that’s great, but if she decides she doesn’t you cannot change her mind – once you have had it you are never going to get back in to her good book. Lucy can sign a little but her understanding is really good as long as you do not go overboard – if you said go and get an apple she would be fine but if you said get me the red one with spots on she would not understand.

Lucy at Challengers

It did not take her long to feel at home, she loves it and doesn’t even look back when I drop her off – she is just gone. The staff there are just amazing, I am sure she thinks all the older lads are her brother. She goes up to the team and says ‘you are fantastic!’ and gives them a hug!

Lucy was about 7 when she started at Challengers and she is now in her late teens. When she was at the Playscheme she could go all the time which was fab. All of the staff are just wonderful – I would like to put them all in my pocket and take them home. I am not sure who was more upset – me or her when she moved up to the Youthscheme!

When she moved up to youth Lucy started to need 1:1 support which meant she could not come as often which was sad. She needed this level of support otherwise she would just sit there and do nothing, she needs someone to engage with her and pull her along. The leader at the scheme was the one that suggested this and that was brilliant for me as she was quite right. The staff were great with the transition, they made sure that some of the staff that she knew from Play went up with her and settled her in. The transition was so smooth – everything was thought out. I didn’t even ask for that – they just did it! Lucy is not good at change so this process was great.

Challengers has given Lucy independence – without that support it just would have been really hard. It has gotten slightly easier as she has gotten older as we have a routine but before Challenger it was just so hard. It would have been a real hard struggle and I do not think she would have progressed as much as she has. Socially, the staff talk to her, point things out, do activities, she progressed educationally without even realising it and the interaction from my aspect is terrific. They think they are just playing but they are not, it is pure education. The development has come on leaps and bounds since she came here.

When Lucy is at Challengers I am able to spend a few hours with my mum, we go to National Trust properties which is nice. The day is for us – when we are with Lucy everything is about what she wants.

The Challengers staff

It is always such a lovely atmosphere, and you always think you must love being here! You can feel the energy and the atmosphere when you walk in. When they go out on the trips it’s great they tell us what Lucy did and what she enjoyed. I would trust any staff with my daughter and it is just so much fun for her. She looks forward to it, and she know as soon as we are on the road, she is excited! Knowing she is so safe and happy and not just sitting there – I can live my little bit of life and there is no guilt as I know she is having a great time.

Everyone that works at Challengers wants to be there that is the difference. With Challengers she is very safe and I have no problem letting her go.
There is nowhere else for Lucy to go other than Challengers. She has her carers every weekend – I believe in her going out everywhere, she is an ambassador for Angelman. She goes to the theatre, the cinema, to restaurants, cafes, we go everywhere with her. We try to get her out and trying things all the time.

Why Challengers is so important to our family

If Challengers did not exist It would be a nightmare! I would not be able to work full stop and we would not get that break. You cannot do it for yourself when Lucy is there.. When she comes to Challengers it is such a relief – I know that sounds awful but I could just sit down and have a sleep. Lucy does not do a lot of sleeping, she can wake up and 1 or 2 in the morning and that is it, she is just awake! She would not go back to sleep. I remember a long time ago she slept until 9am and I made my husband go in and see if she was still alive and I was so scared as she had never slept that long.

When she is at Challengers I can just go around the town on my own – oh my god! I know that sounds strange but with Lucy you can’t – she is off, she is so quick – it is a nightmare and very stressful. I just get a couple of hours to recharge – I need them. I always said if I won the lottery I would build more Challengers so I could get more time as once or twice just isn’t enough for me or Lucy. Me and my husband both agree that if we on the lottery we would just give Challengers money.

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Challengers has given Lucy independence - without that support it just would have been really hard.

– Barbara-Anne Chapman