Where was the support?

Since my Robbie son killed himself three years ago I have pondered
our life with cerebral palsy. Transition periods in any child’s
life need careful handling. This is even more important in a
disabled child’s life and sadly we were not shown how to provide
it.

The reception of a disabled child at birth is critical. Parents
need to be counselled, supported and helped practically with the
implications of the news that their child is not “normal”.
Involvement with other parents who are dealing positively with a
child with a similar problem further along the path, is invaluable.
So many families with a disabled child feel alone with the problem,
as we once did.

The move from home to nursery education is another time when
support and advice is necessary. The question whether to take a
disabled child to mainstream facilities or to those specifically
for the disabled is a vexed one. It depends on the degree of
disability of the child and on other factors such as the attitude
of the service providers regarding specific needs, and the strength
of the mother to cope with negative responses towards her child.

The next challenge is entry into infant school – will it be a
special school or mainstream? There are advantages and
disadvantages of both and they need to be explored. In our case,
Robbie went to a special school until he was seven – I still don’t
know if that was the best choice. There did not appear to be any
other option at the time.

Transition into mainstream education from a special school is a
crucial time in a disabled child’s life and how it is handled can
determine the whole attitude of the child, the staff and peer group
for the rest of her or his educational career. Staff shortages in
mainstream schools, combined with a great deal of educational
ignorance of the needs of disabled children can lead to a child
floundering. My son Robbie – so desperately not wanting to be seen
as disabled by his peer group – shunned any help. It is important
to recognise that the disabled children themselves play a large
part in how their future unfolds. Emotional work is vital.

The advent of adolescence hits the disabled child hard and is a
time when counseling may be needed. This was not available to
us.

Help with leaving school is crucial. In Robbie’s case, general
careers advice was given and he went, without knowing all his
options, to do a GNVQ course at a local college. It was not
appropriate. He dropped out and was then lost in the morass of
unknown possibilities within wider society. He had no reference
point. The Prince’s Trust course he did was invaluable and led to a
job at Royal Mail but he still did not have the specific support he
needed. The perfect ground was there for alcoholism to take hold.
He died aged 22 as a direct result of it.