Our daughter Catherine had very severe health and learning difficulties and sadly died at the age of 14. Catherine was in a wheelchair and fed by pump, but she loved being outside, people making a fuss of her and sensory experiences, such as listening to music. Over time, Catherine needed more and more help and was dependent on medical equipment, only those with the right training could look after her. After she died, we realised we had all these special skills and wanted to help others like us.
A Home from Home carer is someone who is compassionate, patient and has the love, care and good communication to support a child with complex, emotional and/or physical needs. You are giving families a breather which allows them time to recharge their batteries, spend time with their other children or go out on occasions which might not be suitable for the children. It helps to have an understanding of disabilities and how Special Educational Needs (SEN) schools work.
I have been a Home from Home carer for many years now; it was previously known as Family Link and Specialist Respite Care. During the week I work in health care as an Occupational Therapist and two weekends a month, my husband and I have two families we support where we get to use all our skills and so many more. The families really appreciate it, and it gets us doing something different.
Joseph* is 17 years old and we’ve been caring for him for three years now. He fitted in with us straight away and has Down Syndrome and a hearing impairment for which he wears hearing aids. Joseph is delightful, lively and very mobile. We have a great relationship with his parents too. As a Home from Home carer, you make a link with the family as you are there not only to support the child/young person, but you’re there to support the family. We have Joseph one weekend a month and take him to a gym club on Saturdays. He likes the park, the beach, going to the cinema and food. Joseph really enjoys going out for lunch or helping cook at home. His behaviour can be difficult as sometimes he has frustrations when he sees others doing things he can’t. Joseph has never not wanted to come to us and for him it’s like a sleepover.
Over the time we’ve cared for Joseph, he’s become more independent for example he likes to make his own bed and choose his outfit for the day. When you open the door to Joseph, he comes running down the hall calling out, “Look, it’s me!”. He certainly enjoys spending the weekend with us, but he couldn’t be with just anyone. As a Home from Home carer, it helps to have an understanding of disability. Some people have a wealth of Autism experience whereas other carers have a strong skillset in physical disabilities and having a community of carers with this variety of knowledge and experience is great but there are new and improved training courses available for all new carers.
My husband and I also look after 8-year-old Lucas* one weekend a month. Lucas is similar to Catherine and is in a wheelchair. Our home was already adapted for our daughter, but Hampshire County Council have provided additional equipment, such as a profiling bed and a hoist. Lucas is nonverbal, has a feeding pump and takes medication almost every hour. His daily routine is crucial – you can’t miss his drug doses. He’s a happy little chap who loves the garden, being outside and walks to the park. We have put up twinkling lights in his bedroom and read stories before bedtime, which he really enjoys. You get to know these children and it’s really rewarding.
Joseph and Lucas both have older siblings, and their parents are aware they can miss out on aspects of their lives due the needs of their younger siblings. Respite gives families time with their other children. For example, Lucas can’t really be away from home for more than two hours, so the weekends he was with us allowed his older sister a day out to celebrate her 10th birthday with all her friends. As for Joseph, his parents were able to take his older brother to university which was huge for them. We will send them photos of what we’re up to, to reassure them – I know from my own experience that it’s nice to know they’re ok. I want parents to trust us to do what we do. Joseph and Lucas always have fun when they spend the weekend with us, and their parents appreciate that hugely. We don’t have much contact with the families in between stays unless they’re doing something special. Lucas’ dad is a farmer and they sent us a photo of Lucas with his dad driving the tractor during the harvesting season which was so lovely to see.
We arrange weekends about three months in advance direct with the families. When we are first matched, they visit us for a cup of tea and then progress to some brief visits, usually a couple of hours or so. Joseph and his parents were happy when we did this and so we went straight into an overnight stay. At first, it’s very nerve-wracking, looking after another person’s disabled child. We were worried Joseph might be frightened without his parents. We needn’t have been, he slept through the night and woke up at 5am so excited and bouncing on the bed. After this moment, we never looked back.
As a carer you are expected to keep a diary and ensure this is kept up to date. We were given a folder for each child, and we include everything we’ve done with the child including where we’ve been, any behaviours and for Lucas, recording his medication.
In all honesty, becoming a Home from Home carer did feel a bit overwhelming at first but we were very sure about the importance of the scheme to support parents. Caring for Lucas and Joseph gives us a huge amount of pleasure; both boys are adorable with lovely personalities. It’s heart-warming to know you’re doing a really good thing. A lot of people are frightened of disability and worried they’ll be difficult to manage when they needn’t be, especially once you get to know them.
If you’re considering becoming a Home from Home carer, do it; you will not regret it. It’s a lovely thing to be able to do. You’re not ‘giving up’ your weekend, you’re improving what you do. These children have enriched our lives and we look forward to those weekends with them.
*Name has been changed.