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Reverend
John Hartley writes:
"We were very fortunate (or do I mean God had it well planned?)
that when Peter was born our church in Bexleyheath had experience
of Down’s Syndrome (which is caused by an extra chromosome
at conception, and results in both physical and mental disabilities).
We had two young women with Down’s Syndrome in the congregation,
and we knew that they could be very happy and fulfilled people.
I guess I wasn’t quite so prepared for Peter’s stubbornness.
Peter’s
health is fine: he had some hearing problems when very young, but
none of the more serious things like heart complaints. He has Coeliac
Disease, which means he can’t eat wheat, oats, barley or rye
or any foods made from them, and that makes kitchen life a bit complicated.
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Peter
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However,
Peter’s mental handicap is severe, and his speech is very poor.
We use Makaton sign language with him, and I daresay you will see
it in children’s songs at church. He is much better at understanding
pictures than words, and we use photos to explain to him what is
going to happen. He can follow a story on video, and likes songs
on tape.
On
the negative side, Peter has no sense of personal boundaries, and
he’ll disrupt others’ toys and games. He’s also an
escape artist, and has little road sense. But on the positive side
he’s very friendly, and he has found his way into the hearts
of our congregation in Hanford. To get to know him, try doing numbers,
letters and simple drawings with him.
Neil
is our fourth child and has autistic spectrum disorder. It was first
picked up in September 2000 when he started at the playgroup at
St Luke’s School: when the staff pointed out that Neil did
not interact with the other children in the way you’d expect
of a child of his age. They lent us a couple of books about autism,
and as I read them I instantly realized that they described Neil.
Autism
is difficulties in three areas of life: social interaction, communication,
and imagination.
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The first sign of Neil’s autism (if I’d recognized it
then) was that he never used to point at things to get an adult
to look at them. He plays with toys by himself, and isn’t interested
in games or sharing with others. When strangers enter the room Neil
just ignores them, and when you call his name he doesn’t respond.
He will enjoy some joint activities (for instance, rough and tumble
play), but he switches you out of his mind as soon as you stop that
activity.
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Neil learnt to speak and to sing songs quite well - or so we thought.
He learnt “When I survey the wondrous cross” by memory,
all four verses, by the age of two-and-a-half (you can tell how
I used to sing him to sleep!), and he could tell the story of “The
Very Hungry Caterpillar” word for word. But if you ask him
“Neil, do you want jam or paté?”, he’ll reply
“want jam or paté.” This is called “echolalia”
- he can repeat words, but using them to communicate is something
else entirely. He has only 20 or 30 words with meanings.
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And on imagination, Neil can build towers with bricks. He can count
model cows, and line them in rows. He has absolutely no idea of
making a field for the cows to live in.
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Luke's Church |
In
a way these three areas are all linked: to interact socially or
to communicate, you have to be able to imagine what it’s like
to be someone else.
Neil’s autism is partly his inability to see the world through
anyone else’s eyes.
So
what caused it? I don’t know. The constant questions in the
news this last month have been very painful. I can’t remember
Neil having a bad reaction to his MMR vaccinations. But more than
one in 200 children now have autistic disorders, compared to less
than one in 2,000 ten years ago. We know measles can do dreadful
things, and maybe we are discovering that the vaccine can too?
I have
no answer to “why?” But what I do have, through Jesus,
is an answer to the question of how to live through it. I have one
who holds my hand, even if I go through the valley of the shadow
of death."
(This
article has been taken from a back copy of St Luke's parish magazine)
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