It can take a long time to recover from the shock of finding out your child has an illness, disability or learning disability. And it can take longer still to adapt to their condition as they grow older. But there will come a point in their life when they will stop being a child and start to become an adult.
The process of growing into adulthood, which is often referred to as 'transition', can be a confusing and emotionally difficult period for both you and your child. It can be hard to adapt to their need for independence and to accept that the support of schools and children’s services will no longer be there.
You need to think about their future as early as possible. This includes where they will live, how they will earn money or be provided for, and what happens if you, or other carers, die.
Gail Hanrahan from Oxfordshire has experienced her son's change from childhood to adulthood, and is now supporting other parent carers as part of her work with national charity Contact a Family and local organisation the Oxfordshire Family Support Network.
Gail’s son, Guy (19), has Angelman syndrome, which is a rare genetic disorder that means he has little understanding and no speech.
She says: “I always felt like Guy was my little Peter Pan and that he’d never grow up. I thought of him as a little boy, but now I need to think about him like a young man. That’s a hard thing for every parent to do.”
School
Given Guy’s situation, the family realised they needed to think about his adult life, and began doing so when he was 12. Gail found that getting education appropriate to Guy’s needs from the age of 16 (the upper age limit of compulsory education) was “a real battle”. Fortunately, she managed to persuade the local authority to fund Guy’s residential schooling outside the area at MacIntyre’s school.
Out-of-school activities were also difficult to arrange because the available 'age-appropriate' services offered to the 16-year-old Guy were not appropriate to his abilities and needs.
Once Guy started attending the residential school, his family decided that it should be the first and most important step to becoming properly independent of them. It also meant that he would never permanently return home. Gail says: “That’s a horrible thing for a parent to say, but I knew it was the right decision for Guy.”
Transition
When thinking about your child growing up, it makes sense to find out what help and support is available in your area. Every local authority area has a 'learning disability partnership board' that has links to all the organisations near you that can provide activities, help and care. Gail advises that you contact these places first.
Despite planning early, Gail still found the process of transition, which normally begins when a child is 14, both an emotional and intellectual challenge. “I felt that I had spent years learning the system,” she says, “what people do, the jargon, who does what. Then, when Guy reached 14, I suddenly found myself learning a whole new system.”
As Guy came home from school every other weekend, Gail found the family had time to devote to planning Guy’s future. Although he couldn’t say what he wanted, the family developed a 'Guy-centred' plan by asking everyone involved in his life, from teachers to friends, what he wanted.
Importantly, says Gail, what people suggested he wanted were simple but easily overlooked things like having chocolate or being able to play his own DVDs.
Advice
Even though help is available from schools, the local authority and charities, Gail says that the best advice about the transition process comes from other parents whose children have grown up or are at a similar stage. She says: “The biggest thing for me was finding like-minded people, particularly parents who I could learn from and alongside.”
She adds: “Ask questions rather than waiting to be told about things. If somebody tells you that you can’t do something, don’t just accept it. 'No' doesn’t have to mean 'no'. It can mean 'let’s find another way'.”
The friends Gail made also helped her through what she calls a 'daunting process' of making sure Guy will be financially secure. Now that Guy is an adult he has new rights. But, because of his lack of communication and understanding, it is hard for him to exercise these rights. Gail applied to the Court of Protection for the power to make decisions over his finances. This now means that Guy’s professional care is funded through a direct payment, but that Gail has control over his daily finances.
The future
For the past six months Guy has been living in supported housing with three other young adults. Although Guy is still only 19, Gail remains cautiously optimistic about the future for him. Her aim is for Guy to have the same life as his sisters: secure and happy with friends and relationships.
She says: “That’s not going to happen easily for him as it will for them. When they reached 16 they became independent naturally. For him it wouldn’t happen unless we organised it.”
