Chapter One
THE DAY MY LIFE CHANGED DIRECTION
After my third child was born
he never made a sound; the nurses and the other moms on the ward commented how
good he was to sleep the whole night through. I just thought I’d been given
reprieve, due to my first child being still born and my second coming out and
continued for much of his life screaming and crying, whereas Charles always had
to be woken up for feeds. It was when he was approaching his third birthday
that I became concerned about him.
His - speech or in his case, - lack of it was definitely beyond most
three-year-olds. He would use grunting sounds to get my attention, or use words
like “ju, ju” for juice while thrusting his cup in my hand, or “bye” whether you were coming or going, but that was about it.
He was a ‘late
walker’ but once started he began racing from room to room; from toy to toy;
and making loud excitable noises whilst removing any clothes I had just put on
him.
The baby clinic I
took him to put us in touch with a speech therapist, but the therapy didn’t
last many weeks, so we just put it down to him being a slow learner.
Each day became a battle;
if we were going out I would have a major job on my hands getting Charles ready.
As usual he always had other ideas and would do anything to avoid getting
dressed. While I’d try and lift him off the table and prize his fingers from
the wall lights he would be grabbing again with his other hand. By the time I’d
got his first hand free the next was in place. Everything was a game to him.
I thought that once he started at Playgroup, mixing with other children,
things
would be okay. It didn’t quite work out that way, though.
Staff at the Playgroup questioned his lack of speech and co-ordination
and asked
whether he was deaf or autistic. They were concerned about his behaviour. I had
days of negative feedback about how he was not listening, pushing every other
child out of the way in his enthusiasm to get to the toys first, and pulling
the classroom blinds down.
I suppose they were
doing their best, Charles had taken them by surprise; they didn’t know why he
was behaving like he was, with no communication, and he had even less knowledge
what the teachers were talking about. I think it was the Nativity play that
finally broke the camel’s back, excuse the pun. Well, how was Charles supposed
to know that running off with baby Jesus would upset so many people? Between
him and another child trying to rescue the doll they managed to rip off one of
the arms (the doll‘s that is!). The gasp from the audience was unbelievable and
all in unison. They looked at me in utter disgust.
So it wasn’t
surprising that they reduced his hours from three and half hours to one
hour daily. That’s
when I knew he’d never stand a chance of going full time in a mainstream school;
they were seeing him as a problem child. I felt such an outcast and so alone. I
sat and sobbed and in complete desperation rang our health visitor and asked
for help.
The local hospital
sent two clinical coordinators to assess him and within twenty minutes of
observing Charles they agreed there were some characteristic signs of autism.
The shock sent a sudden jolt of fear through my body. I began to feel nauseous.
The room spun with the word autism. I felt my throat tighten, stopping me from
speaking. My world was crumbling right there in front of me and there wasn’t a
damn thing I could do about it. They continued to talk, but I could only see
their mouths moving. I stared over and watched Charles lining up his cars on
the window sill. Questions filled my mind. Why? How? Would he ever marry,
drive, lead an independent life? There
were no answers!
We spent the next
three months attending the hospital for an assessment.
His running off
became worse, he would try and do a runner every time he heard the front door
of the house open. Even windows were locked for his own safety. His sense of
danger was non-existent and from a very early age he had to be led round by toddler
reins and later a wrist safety strap.
I gave up work to be with him. I couldn’t face someone else taking care
of him; I knew he needed me and I had to be there for him.
At the time I only told my immediate family (husband and sister). My mom
and dad had long passed away and the rest of the family were getting on in
years, so I thought it best not to tell them. My logic was they couldn’t help
anyway, so I didn’t see the point in upsetting them. Maybe I felt I had failed
as a mother, let everyone down! I’m not really sure. Anyway, the rest of my
days went in a blur of battles with the authorities over entitlements, hospital
appointments, speech therapists, form filling and sorting out an
appropriate school.
I was now thinking of a special school for my son. It was a hard
decision but I wanted to give him the best possible start in life and that’s
where this life changing event begins.
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