A customers story - N

Tell me about yourself…

COVID has been a really difficult time for everybody, especially N. as she finds it difficult to understand (due to her Autism) The changes that happened so quickly at the beginning of the pandemic really upset her and I feel that more consideration could have been taken to support people with the changes that were happening. (due to the Govt. advice at the end of March 2020 re: COVID-19, customers stopped attending day services and staff were redeployed to work in the community homes.)

At the start of the pandemic, N felt like her world had come tumbling down around her. She felt suffocated at home, not being able to go and do the things that she would do normally. This led to her anxieties increasing which affected her sleep, eating patterns and all of her routines went out of sync.

Thankfully, N. was able to continue to receive support from her Psychologist via ZOOM and although at first N. didn’t want to use this, she got used to it. It was important for both of us. It helped N. to understand that everyone was feeling the same way, which was reassuring.

Gradually we started to go out for walks, which N really enjoys. Walking helps her to clear her head and tires her, which helps her to sleep. She gets really concerned about all sorts of things and the distractions helped and stopped her getting bored. She would use her ‘tablet device’ or do some art. What she really wanted was familiarity and routine and to see her friends and staff.

N. needs to know what is going on and finds it difficult to comprehend why she can’t continue to do the things that she is used to. She doesn’t understand why she is not being able to speak to her friends because staff aren’t able to share their telephone numbers.

Once the Boyn centre and respite opened up, N. was able to meet her friends and the people that are important to her. We had phone calls from staff at the centre and N. had some routine to look forward to.

When the ZOOM sessions were introduced, N. was a little apprehensive at first but now she really enjoys being online and seeing/ talking to her friends.

What is so important for N. is knowing her timetable/ which staff will be supporting her. Not knowing really increases her anxieties. I try to look at everything in a positive way, but N. seems to do the opposite.

She has had her first COVID vaccination, which she was apprehensive about as she had read online about it. She realised that if she had it she would be protected and that she would be able to do more of the things that she wants to do.

N. has started to have regular contact with a friend from school and they talk to each other on the phone. When I hear her talking, I realise that she does take on what I try to support her to understand. It is good that she has connections with others, which is really positive.

The change in name to ‘Community Lives’ has thrown her a bit. N. likes her routines and likes things to be the same (as before COVID)

The consistency of staff at Boyn Grove has helped N. to build trusting relationships. N. is able to talk through what is concerning her and those people understand her and how she is feeling. It would be ideal for N. to have 2 Key Workers. With detailed Care Plans, people can get to know N. and understand how she communicates and understand the things that worry her. Patience and understanding are important. Taking the time to complete simple tasks, one step at a time.

One of the areas that could be improved (in the day services) is the way in which changes/ transitions are managed and communicated. I think that more consideration needs to be taken to support people like N. who find change very difficult to understand.

I do think about the future for N. and talk to her about it. At the moment, she says that she is not moving anywhere else and wants to stay at home with the family (forever). She is quite resistant. I would like her to learn and develop her Life Skills and to be more independent. I think that this is really important. E.g. Travel Training for 6-12 weeks step by step and to learn how to deal with things if they go wrong. Money management and budgeting. Shopping and knowing what is a priority e.g. food or clothing?

Bills and application forms, using the internet, using the library, understanding what to do in an emergency situation, understanding and appreciating difference, it is important to recognise all cultures and humanity.

As N. gets older, I want her to develop friendships and relationships with her peers. She needs support to organise get togethers e.g. cinema/ meeting for coffee. Support from staff to co-ordinate this in the evenings/ weekends.

Ideas for the future services to consider; Day trips – something to look forward to e.g. seaside/ theme park.

My hopes for the future are that N. is abe to develop her independence and have a life like anyone else.