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A touching story of a
loving mother’s tears as her son fights autism.
Originally published by the British media; theguardian.
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Admitting that I’m scared of my son is almost
impossible and no one knows all the details of our life behind closed doors.
I’m small and very slight and Robbie is now nearly 6 feet tall and quite solid
so he can inflict a lot of damage on me if my husband David isn’t there to stop
it. The first time Robbie hurt me he was 11 and I’m still not convinced it was
deliberate. We’d had a week of terrible weather and on the Sunday we decided to
take the boys to a museum.
We rarely do things as a family, as Robbie needs
so much attention that his brother Joe ends up upset and frustrated, but we
thought if we went early in the morning there wouldn’t be many people there.
The first half hour was peaceful and David suggested he went to get coffees as
we didn’t want to risk going to the cafe in case Robbie had a screaming fit.
Two minutes later a big noisy family group came in and within seconds Robbie
lost it, screaming and throwing himself on the floor.
Joe turned his back and I tried to calm Robbie
while the family gazed at us in horror. Robbie was thrashing around and I was
trying to put my arms round him, a mix of consoling and restraining, and he
punched me right on the nose. I could feel it crack and I literally saw stars,
something I’d never thought was real. Tears were pouring from my eyes through
sheer shock and I could feel my nose starting to bleed. One of the older men
said something like “Young man stop this at once!” but that meant nothing to
Robbie, who punched me in the head over and over. All these people gathered
round us but obviously had no idea what to do and then David appeared and
dropped both cups of coffee all over the floor as he rushed to grab Robbie. It
was utter, humiliating pandemonium, with one of the men shouting at David that
Robbie needed a good hard smack and David shouting back “You stupid bastard,
he’s autistic!”
All the way back to the car David held Robbie
like a prisoner and Joe just said over and over, “I hate him. I wish he wasn’t
my brother.”
It took us all weeks to recover. I had two
black eyes and my nose and cheeks were bruised. Neither Joe nor David could
look at me properly until my face was better. David was worried about me being
in the house alone with Robbie when he came home from school but he has to work
as I gave up my job to be at home with the boys.
When Robbie was a toddler he was cute, with a
solemn little face and curly blond hair. He was quite controllable at that
point as I could remove him from any difficult situation easily. When Joe was
born my sister helped a lot, as Robbie clearly hated the change to his routine
with the arrival of the baby. When he was formally diagnosed I thought support
would be put in place to help us all. I was really naive and assumed there
would be help available as soon as I asked for it, but I now think something
was only done because I turned up in such a state and they could see the damage
he’d caused. I believe that they only worry that we might harm or kill him and
have no concern that one day he might actually kill me. We now live in fear of
that couple of days respite being withdrawn for any reason so I would never,
ever rock the boat by asking for more, unless things got really desperate.
There’s very little respite care available, even if you can afford to pay for it
privately, which we can’t. I also know from people in the same situation that
it’s impossible even to hope that Robbie will be able to move into some sort of
long-term care. There’s no money and hardly any places. No one sees us as
important.
We were grief-stricken at his diagnosis but
each had a different reaction. David wanted to find out everything about the
condition in the hope of a cure. I just wanted someone to tell me that with the
right approach he could still have a lovely life.
We came home and Joe was toddling round the
living room, laughing at my sister tickling him and gleeful to see us. Robbie
was tired and started banging his head off the wall and making the strange
screeching noise that indicates he’s very distressed and might take hours to
calm down. I burst into tears and David walked out of the room and slammed the
door.
Severe autism is difficult to understand if
you don’t live with it. Everything we do is centred on Robbie’s condition,
which is really hard on Joe. Our house is like a minimalist fortress with every
window and door bolted, anything potentially dangerous shut away and even
ornaments or pictures taken down now. The third time Robbie swept his hand
across the mantelpiece and shattered everything on it I decided it wasn’t worth
the bother. Robbie won’t sleep by himself and although David takes his turn at
sleeping with him through the weekend, I’m completely shattered most of the
time as Robbie wakes if I move at all. I can’t sleep properly and I wake
constantly because I’m stiff and sore from lying in one position.
The hitting started again six
months ago, when he’d just turned 14. There had been a lot of tension with him
at school and I’d been in and out for countless meetings. That’s frustrating
because these people are meant to be professionals and trained to deal with
children like him but it all came back to us and I felt judged because if his
behaviour.
I asked
about respite care and was told quite sharply that it was unlikely because
Robbie was loved and cared for, and not in any danger. Two days later he
followed me around the house, coming up close to me, making a humming noise. He
does this to David sometimes, or to strangers, and David hates it – he says he
does it on purpose to irritate but I don’t actually think Robbie knows how to
annoy someone deliberately – but he never normally does it to me. Then he beat
me up. He punched me over and over in the face, coming after me when I tried to
get away and constantly hitting me as I tried to defend myself. Then he just
stopped, sat down on the couch and started leafing through a store catalogue. I
was scared to move in case he started again and just lay huddled on the floor
till David and Joe came in. My lip was so badly burst I needed stitches and
again my face was a mess.
That was
the end of any sort of relationship between my sons. Joe hates Robbie and won’t
listen to us trying to explain how frustrated he is at being unable to
communicate and that is why he’s violent and also self harms. The tension in
our house now is constant. David goes into work early as Robbie seems calmer in
the mornings and goes to school all right, but after school is hard.
David
tries to get home with Joe just half an hour after Robbie is dropped off. I’m
always on edge. If Robbie does hit me when I’m alone I curl up in a ball on the
floor and try to protect my face, and if David’s in he physically stops him and
shuts him into his bedroom. He lashes out at David but he’s taller and bigger
than Robbie, so he can hold him back. Joe goes to afterschool care so he
doesn’t get in the middle of any violence.
So far
we’ve managed to avoid Robbie attempting to hit his brother and Joe watches
with complete disgust if Robbie starts self-harming. He told me last week that
he wishes Robbie would die, which broke my heart because I know Robbie only
hurts me because he is in such pain himself.
I went to
the social work department with my battered face and begged for help which is
why we now get the two nights of respite every six weeks. I couldn’t tell
anyone else he was attacking me but then he tried to hit my sister so she can’t
babysit anymore and David and I never go out as a couple, as we devote all our
time to Joe during respite. I live from respite to respite and I never think
about the future because that’s the only way I can cope with this life
sentence.
