The impact of young adults leaving the home can leave parents feeling anxious, alone and at a loss for what to do.
But for the adults of children with learning disabilities who have often cared for the basic needs of their child their whole life, the move can bring a more acute set of anxieties.
“When we left him that first day, he looked at me as if to say ‘give me a kiss goodbye’ and I was overwhelmed by a physical pain in my heart and chest,” says Pat Jennings, whose 24-year-old severely autistic son Peter has been living in sheltered accommodation for almost two years.
While this feeling is common in parents parting ways with their children for the first time, Peter’s parents say for them it was made all the more difficult by the fact that their son is unable to communicate or understand new information.
“I didn’t want him to think he was being punished and that I didn’t love him, because I do,” Pat says. “But it wouldn’t have meant anything to him if I had told him that. It was hard not being able to communicate with him through this huge upheaval.”
Pat was left with anxiety for a number of months after Peter’s move, and says she felt guilty for putting him in to care in the first place.
Guilt is something that many parents of children with learning disabilities feel, says Anna Galliford, chief executive of FitzRoy, a charity that helps people with learning disabilities live independently.
“These parents have often looked after their child 24/7 since they were born,” she says. “To then accept that they need help makes many ask: ‘Was it my fault? Did I do enough?'” She says that the situation is not helped by the fact that there is a stigma attached to care homes as indicating of some kind of failure by the parents.
So how do parents move past this feeling of guilt? Galliford says it begins to fade when parents realise that their child is responding positively to being away from home and achieving success.
Rosa Mockton, whose 19-year-old daughter Domenica has Down’s syndrome, agrees.
“It wasn’t until Domenica started at City College Brighton and Hove on a catering course and began living away from home for three days a week that I even realised what she was capable of,” she says. Domenica has now secured a part-time job in a pub and is enjoying her life in Brighton, but Rosa is realistic about her level of independence and how much of it comes from decisions that she makes for her.
“Domenica as a 19-year-old is assumed by the state to be capable of making decisions about her own life,” she says. “But the reality of it is that we should continue to make these decisions for her as we’re the ones who know her needs.”
She explains that as a parent of a child with a learning disability she feels there is no such thing as empty nest syndrome, that the responsibility simply does not go away. She met an 80-year-old father recently who felt as though he “could not die” because of a fear that his 50-year-old daughter would not be cared for correctly.
Families with children who have learning disabilities often spend a lot of time and effort on their care due to extra needs – much more than the average parent might do. Everyday activities such as getting washed and dressed and helping with feeding may be performed by parents right through to adult life. So, Galliford says, it is natural that they would feel concern when this care suddenly falls to somebody else who is not familiar with the important subtleties of their child’s needs.
“Whereas parents of non-disabled children may worry, they know ultimately that the child will be able to look after themselves,” she says. “But for these parents handing over the reins to somebody to look after their child can be difficult.”
Pat and Rob struggled with this for a long time, until they came up with a solution that meant they were ultimately in control of the care Peter receives.
“We decided that the only way he was going to get the correct care was if we wrote a training manual for the carers,” Pat explains. “We wrote down absolutely every factor in Peter’s care, from how I dress him to what he eats, it was vitally important that they knew exactly what his routine is otherwise he becomes violent and unhappy.”
This process took over their lives for six months but eventually their notes were converted into training manuals that they insist Peter’s carers follow rigorously. It is knowing that Peter has the same routine he had at home that gives them solace. But, as Pat explains, it still took more than a year for her to really trust the nurses.
“I must have been a nightmare, I was there every day checking everything was OK because I was constantly worried that something was going to go wrong. As a mother I felt as though I needed to be there with him all the time.”
When a child with disabilities moves out of the family home, parents can find themselves with a lot more free time, which can come as a shock.
For Pat and Rob, this new-found independence has allowed them to reconnect with each other.
“I feel like I’m getting to know my husband again,” Pat says. Whereas one of them would always need to be at home looking after Peter, now they are able to go out and enjoy each other’s company. Pat has completed a hairdressing qualification and Rob has taken up singing again, and they have enjoyed their first holiday in 10 years.