The difficult decision to let our beloved son go into full-time residential care at Options Higford
“For us, Peter going into residential care was a last resort. The huge demands of looking after him had broken up our marriage and no local authority school felt they could meet his needs. Following the horrific revelations in BBC’s Panorama recently, many parents considering the same life-changing decision will be faced with new fear and trepidation. After all, our kids can’t speak for themselves, can they? How do we know what is happening to them, once in care? I can now share my reflections on Peter’s time in residential care so far.
It has not been an easy ride. The first thing that happened was that ‘strong Mary’ disintegrated. Six months after Peter went into care, I fell to bits. My own GP has an autistic son and so was able to empathise. She said I was exhibiting true grief, along with huge guilt for ‘letting my boy down’. Along with the fact that I had coped with so many demands for ten years, coupled with no sleep, it had all come and bitten me hard on my derriere! It was an awful time; everywhere I went, I took the big black dog called depression with me. It was a tough time but, with support, things slowly improved and gradually a watery sun began to shine again.
Now for the good bits! I am not going to report huge, miraculous improvements with Peter, as that hasn’t happened. Peter has severe autism and severe learning difficulties but, with the support he has had from both school and the care home, who work together to make sure he is given a consistent level of care tailored to his complex needs, he has made slow and significant progress. He can now walk around Tesco pushing the trolley. He waits in a queue (unheard of!) to pay for his shopping and packs his own bag with verbal prompts. This takes place without anyone else coming to harm or the staff being presented with a huge bill for repairs from the management! He can help change his own bed, dress himself and use a knife and fork. He is not able enough to use a computer to play games, can’t read and couldn’t begin to write his name but can follow his day using a visual timetable and is clever enough to swap the photos on another student’s timetable, if he prefers the look of what that person is doing! His verbal communication has improved, too. He loves the sensory room, the water play and occasionally interacts with his peers.
I have to be honest, when he lived at home, Peter had a very poor quality of life. All we could do really was police him and make sure he stayed safe. Once in care, in specially built surroundings with trained care staff to look after him, a whole new world opened up to Peter. In the holidays, he visits the seaside (a place loves to be), adventure parks and fairgrounds. He’s walked the fells and visited waterfalls. He’s even been out for an Indian meal or two! He is regularly taken horse-riding and swimming. Every time we have a review, I am astounded by the sheer dedication and persistence of his talented and enthusiastic teacher, who often works for hours, getting nothing back but rejoicing if even a small amount of progress is made. Quite frankly, I’d lose the will to live if I had to do his job on a daily basis but Peter’s teacher thrives on it.
Peter has a couple of amazing key workers and a ‘mother figure’, whom he adores, who gets him up in the morning and works as his support in school. They ring me every night to give me a report of his day, which I value hugely. He doesn’t break so many windows these days but it’s nice to know that, if he does, someone else deals with it! I often hear Peter vocalising in the background, which is sort of surreal – painful and pleasant. They talk with such warmth as they report to me details of his bizarre and quirky behaviour, and Peter is still the loud, exuberant boy he always was, with a naughty twinkle in his eye.
My ex-husband and I pick Peter up on three out of four Fridays and care for him together at Peter’s old home. We did go through a period of not coping with Peter as when he approached adolescence he became very bad tempered and aggressive towards us and his levels of anxiety went off the Richter scale. On more than one occasion, we have rung the school to ask for back-up. We are always supported by the staff in our desire to keep Peter coming home to be with us. He loves it and we love our regular chance at being proper Mum and Dad to him. Every time Peter goes back, and I have to say he is always pleased to see the staff and happy to leave me, I always feel awful as I watch him go and, yes, I still cry. However, I know that we just couldn’t cope and he is in the right place and that we have honestly done the best for our boy. To those of you out there who may be facing the same prospect, take it from ‘she who knows’. Take your time to find the right place able to meet your child’s needs; a place where you feel you can trust the staff, a place where you will always be welcome to go in and discuss your child. Remember, you are not letting your child down; you are doing the best for him/her. Believe in – and hold on to – that thought!”
A young man aged 23 with Aspergers…
F was diagnosed with Aspergers syndrome and in 2009 he moved to Options Malvern View, providing him with an independent en-suite living space, along with the use of communal kitchens and living rooms. Assigned a key worker and with the full support of a staffing team, delivering a person centered care package, F began his journey to help manage his anxieties and develop his independence.
With tendencies to become verbally and physically aggressive and posing a risk to self harm, F benefited from the multi-disciplinary team who supported his needs and helped him to develop suitable coping strategies.
After 3 years living at Malvern View, developing socially and personally to be more aware of communication, how to manage his behaviour and improved his self esteem, also enrolling on courses to further his education. A friendly and chatty young man, he worked hard on positively developing himself, with a wide variety of interests both at the service and in the local community.
At the end of 2012 a transition plan was set up for F to move into Options Bredon House, a community support service providing independent flats. Here the key aim is to support young people with further integration into the wider community and real work opportunities. Since moving to Bredon House F is continuing to enrich his independence and he is able to self manage his aggression keeping his anxieties very low. F is learning to budget his money and designs a daily activity schedule to suit his needs. F continues to strive to achieve his goals. He is keen to find paid employment and move onto more independent living arrangements in the future. F is a very talented and determined young man!
“Support from an experienced staff team has enabled her to enjoy life in a way that would not have been deemed possible before”
Rachel started at Options Barton in October 2008, as a 52 week residential student. Prior to this she had attended a local special school; however her level of challenging behaviour and complex learning needs meant that her curriculum opportunities were narrow, and that access to the community and meaningful learning opportunities were not considered possible.
After thorough assessment Rachel’s Individual Education Plan and behaviour and communications programmes were developed. She was given her own flat with en-suite bedroom which she was supported to make her own, supported by both the education and residential teams to engage in on-site activities including music and art classes.
Access to shared learning opportunities were gradual and planned in advance, using social stories and symbols, to minimise anxiety and to help Rachel to communicate her wishes. Soon Rachel was enjoying large group activities such as assemblies and themed parties, within her last year she was eating in the dining room everyday with all Post 16 students and cooking and eating lunch in the school’s on-site bistro.
Once Rachel’s engagement with on-site activities had increased, staff then introduced the idea of off-site activities using PECS and pictures to enable her to communicate about the things she enjoyed doing. Staff slowly built up the range of off-site activities available and soon she was taking part in activities such as bowling and Big Fun (indoor adult play area) with her peers. Her level of challenging behaviour reduced significantly as her ability to communicate her feelings and wishes increased.
Because of the fantastic progress Rachel made at Options Barton, it became clear that she would be able to transition to and benefit from the support and programmes provided at Options Thorpe House, in other words she was ready to make the transition to adulthood. In 2011 Rachel began her transition to Thorpe House; however moving is easier said than done for a young lady with autism who doesn’t like change.
As part of her transition period Rachel was able to visit her new flat as often as she wanted; whilst the sharing of information and transition planning was efficient and effective because both staff teams worked for Options Autism. The timing of the move was dictated by Rachel; initially she joined in activities with her new house mates and visited her flat a few times for tea before deciding that she was ready to move. Staff knew Rachel was ready when she waved her school staff goodbye one day.
Since living at Thorpe House, Rachel has enjoyed learning lots of new skills, and the increased independence that comes with being an adult. Rachel can’t communicate verbally and so she lets her key worker know what sorts of activities she likes to do using pictures and symbols, and together with the programme coordinator they all developed a person-centred programme which aims to build on Rachel’s life skills whilst incorporating the activities she enjoys.
Rachel’s favourite activities are swimming and walking, especially on the beach, and she loves to finish a good day out with a meal at a local restaurant. Rachel has joined the Inclusive Club and enjoys taking part in a wide variety of activities with her friends, including trips to theme parks, the cinema and the seaside. These trips are busy and sometimes mean going long distances on the bus, but because Rachel feels more confident now she copes well which is a fantastic achievement. Rachel continues to try lots of new activities; having a space of her own, a person-centred programme and support from an experienced staff team has enabled her to enjoy life in a way that would not have been deemed possible before.