In 1991 my son Guy was diagnosed with a rare chromosome disorder
called Angelman syndrome. The initial diagnosis was devastating and
coming to terms with his profound learning difficulties difficult,
but in retrospect this was the easy part.
From the outset we were determined to lead an “ordinary” life.
However, we soon realised that raising a disabled child and two
other children, as well as facing the same everyday pressures as
everyone else, would make this impossible without outside help and
To get this support we had to develop a multitude of skills. We
became more knowledgeable about our son’s condition than the
average GP and learned to negotiate, advocate and mediate on his
behalf with a range of professionals from many different
We learned about our entitlements in law and developed an
understanding of how “the system” works. We did all this and more
with limited energy due to a debilitating lack of sleep and in the
knowledge there would be no end to our caring responsibilities.
More than anything we learned that the stark reality of life
with a disabled child is that in order to survive, families like
ours have to fight for everything and continue to fight to keep it,
when sometimes just getting through the day is enough of a
challenge. When we fight we are labelled as “pushy” or “difficult”
but if we fail to get the support we need, fall into crisis and
push for residential services this is dismissed as unavoidable.
It’s not put down to the failure of the system, but to the severity
of our child’s disabilities or ironically, our failings as
Guy is now 14 years old, has the cognitive ability of a two year
old and communicates only by gesture. He needs watching constantly
for his own safety and support with every aspect of daily living.
The one thing that has helped us cope has been regular short
breaks. Not just one hour a week or one night a month, but proper
breaks which allow us to live like a “normal” family for a short
time each month and help us to continue caring for our son at
This respite is what many parents of children with severe
learning difficulties of all ages say they need more than anything
else and yet it continues to be in too short supply.
I’ve heard all the arguments about funding, how this service is
too expensive to provide. But the cost of not providing it is far
greater, and can result in expensive long-term residential care and
When will it be recognised that it is the lack of this vital
service and having to endure constant battles to obtain support
that is the greatest disabling factor for these families?
And why, in one of the richest countries in the world, if you
have such a child, is a regular, decent, guaranteed break from
lifelong caring, too much to ask for?