Having a child with
CdLS can be tough on all the family, particularly as the child gets older. It
can be hard to decide what is best for their future as they grow in to adulthood.
Many families choose
to look after their adult children with CdLS, and other disabilities, at the
family home, while others are able to feel comfortable enough to let their
child have a sense of independence in a specialist care home, although the
first steps there can be very daunting. Ginny and Steve Penney are the parents
of 22- year-old Philip who has CdLS and has also been diagnosed as having
autism. Philip moved into a TLC Home Care home just before Christmas. “He has a
relatively mild form of CdLS but suffers from severe anxiety. He doesn’t take
to change very well at all, whether it is with people or environment,” said
mum, Ginny. Philip lived at home and attended a moderate learning difficulty
school but didn’t progress very well there.
“At 18 Philip was hit
by glandular fever which really wiped him out. He would actually put himself to
bed as he was so tired. He also became more aggressive, less sociable and more and
more isolated. On top of that, he was selfharming,” said Ginny.
The Penney’s decided
they needed to withdraw Philip from school and look after him at home and think
about other suitable options. “We tried to do lots of things with Philip to improve
his behavioural problems such as organise trips away. Unfortunately most of the
trips were not successful. Philip would be anxious once we reached somewhere
and we would have to come home again, sometimes once home he wanted to go
straight back to where we were.
“On one trip he was so
desperate to go home he set the fire alarm off in the building,” said Ginny.
“Philip is a joy but it was quite a strain for all of us. His behaviour was so
extreme and it was worrying with his self-harming. Ideally we would like to
keep Philip at home of course, and have some helpers in but unfortunately we
don’t have the room, or the money, so we approached Social Services for advice
and help.” Social Services didn’t appear to be too helpful but by chance Ginny had
a friend whose child is autistic and her husband worked for Social Services. He
informed the Penneys about care homes for people with autism.
“They didn’t seem
suitable or didn’t have a place for Philip. Then we were approached by a behavioural
team run by TLC Home Care, after that they offered Philip a placement,” said Ginny.
TLC Home Care work solely with people with autism and currently have three care
homes around the country. Philip was placed in one of their new homes in Weeley
Heath, Clacton-on- Sea, just before Christmas last year. The Penney’s were
offered full financial support for Philip as well as having staff on hand 24
hours a day.
“It’s a lovely
five-bedroom bungalow, with a communal sitting room, dining room, kitchen and
various bathrooms. There is also a lovely garden to walk around in, which has a
beautiful country setting. Philip shares with four other people with autism and
there is a constant team of staff on hand,” Ginny said. “Philip didn’t like the
change at first at all, and to be honest he still struggles particularly if
there is a new member of staff or visitors to the other house members, and he does
still self harm. But we have noticed that very slowly he is becoming more
sociable, which is lovely to see. The staff are wonderful. Philip loves music
and dancing and the staff will always be around to have a little dance with
him, which he loves.” As with many families with adult children with CdLS it is
difficult to know what the future holds. “We take one day at a time. The home
is very flexible with family and friends visiting, which we do once a week, and
Philip can come home and visit. At the moment he is only able to manage
‘tea-time visits’ every two weeks which we all look forward to, but we hope in
time he will be confident enough to come and stay at weekends. “We understand
it would be hard for other families to choose the home care option but for our
son it is the right option for him at the moment.” said Ginny.
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