One Autistic Person’s View on Being a Parent
Really
hate holidays... For those who have school age children or dependents how many
families are really able to get out over the holidays? Planning to go out with
a ASD child and NT child not easy... Especially when they clash as she wines (sic) him
up...
Spotting the above post on the wall of my most frequently
used social media site this morning, prompted me to write this. Whether or not
it helps anyone is another thing and, as I only have four followers, one of
whom is dead so expecting this to go viral is unrealistic.
My reply to the post was: It's very difficult. I kind of adopted a detached attitude, which worked
better than thinking I had to somehow cope with every little squabble. Removing
myself was incredibly effective. It's as though they were unconsciously
competing for my head space.
School holidays, for young Ed, were pretty much the same as
term time as he was rarely there, anyway. Out of a possible nine terms in
school at infant level, he barely attended for four of them and a good deal of
that was part time. He went through four schools in three years, being
permanently excluded from three of them. The ‘successful’ placement was at a
small village school founded by the local church and held n the stranglehold of
the Rector and his wife, who were both controlling and dictatorial people. Mrs
Rector took a dislike to my son who, it seemed, displayed somewhat odd
behaviour the good lady wife perceived as naughty. When my son’s class teacher
gave him a certificate for good behaviour, Mrs Rector snatched it off him in
front of the school and tore it up. How very Christian. I spent an entire
performance scouring the faces of the 22 pupils of the school looking for my
boy in a whole school production laid on at one of the churches the Rev Rector
was in charge of. After the show, I found him in a back room, playing with a
water game. Mrs Rector had banned him from taking part and nobody had seen fit
to tell me. Years after events like this, my son still tells me new stories about
the pain he carried as a child. Like how he was made to stand on a chair at
Cubs because he did not want to join in. Typical of an AS kid but, of course,
he was undiagnosed at the time because his behaviour was seen as the result of
being brought up by a single parent struggling to cope and a bigger, wider,
society assuming he was spoiled brat, always wanted his own way, needed a good
hiding or even, as my mum once yelled at him ‘just like his mother’. She
stormed out of the house in tears after he asked why that would be a bad thing.
 |
| 'Edmund' now |
Which is why school holidays were almost an irrelevance, with a few exceptions. Nobody asked Edmund why he was not at school
during holiday times. The rest of the time was worse than the run up to
Christmas. In place of being constantly asked if he was ‘ready for Santa’, who has never visited our house, incidentally,
his most frequently asked question by shop assistants was why he was not at
school. Out of his own, unprompted, initiative, Ed used to say it’s an inset day. What else was a 5 or 6
or 7 year-old supposed to say? I’ve been
kicked out of school? I don’t go to school? I’m between schools at the moment,
thank you? Why don’t you mind your own business?
Whatever time of day or
place in the academic year it was, I was grateful for the positive help and
input we got. There were holiday clubs in the area for disabled children and,
although he had no official diagnosis of anything other than ‘mother struggling
to cope’, they gave me some respite. Edmund hated them. He spent their duration
riding bikes around the yard, on his own. Friends and family would either take
him out, or both of us. There was also Kerry, a part time foster carer who took
the wee boy for respite days. I sat in reception at the Social Services office,
refusing to move until somebody helped me. We were appointed a social worker
and introduced to Elaine, the first respite carer. It was a disaster. Edmund
only went once after the introductory visit because Edmund locked himself in
the bathroom and refused to come out. He was there for hours and eventually
coaxed out by a social worker from the local family support centre. When asked
what went wrong, he said he had not liked her; she was fat and smelly. Now,
with hindsight learned by lots of trial and error, it would have been far
better to have left the lad in the bathroom but people do feel they have to
manage situations. Nobody knew he had Asperger’s at that time, granted, but
even when they did, his behaviour was still dealt with poorly because nobody
took any notice of his primary carer.
Based on an understanding of my son aged somewhere between 6
and 10, I would now give this advice to anyone looking after him. This is not
general advice for any parent of any autistic child. If you are such a parent,
then you will no doubt know them far better and have a much closer relationship
with them than anyone else ever will. So, then, these are Laurie’s hot tips
that work with young Edmund. They may be useful to you:
1- Keep
the environment calm
2- Play
down every potentially volatile situation; raising your voice rarely works and
usually causes tension to escalate
3- When
face with a weapon (chair, cricket bat, etc) look directly at the child NOT the
weapon, walk towards him and remove the object. Stay calm, move slowly. He is
your son. He does not want to hurt you. Back off immediately if you sense any
danger to yourself.
4- He
needs you to be bigger, braver and stronger than him, or the stress he’s
experiencing so tell him you love him; cuddle him and spend time with him. Your
relationship can never be too strong
5- Do
not try to use words to reason with him; verbal language is often lost on even
verbal autistic children (I used to be one of those, too)
6- Be
consistent. You cannot love him one day and hate him the next. If he’s clever
today, he will not be stupid tomorrow.
7- If
you want to know what the hell is going on when he tries to push you in front
of moving cars, has a meltdown in Asda or kicks holes in the walls, wait until
the situation is calm and you are friends again.
8- If
he falls out with his siblings, leave them to sort it out unless weapons are
involved, then see point (3) above.
9- Be
clear and consistent. Do not lower yourself to a shouting match. If it gets
tense tell him you are going to make a cup of tea and you will not speak to him
until he can be pleasant.
10- Keep
a door key and mobile phone in your pocket when you go outside for any reason.
I’ve been locked out a few times so this is a good idea.
11- Essentially,
if you can’t remove the stress from the child, move the child from the stress.
It doesn’t matter whether it’s a sibling or situation. Sometimes the situation
is you.
12- Remember
how to laugh.
…………………………………
My children, two male and one female are now 31, 25 and 20.
The daughter is, as she says, the ‘funny one’, the ‘middle child’ and the full
sister of the eldest. Her brothers were both diagnosed with Asperger’s syndrome
after me and how it all came about is a story for another day. My daughter has
often been urged to take the test but she does not want the label, although
she, like the rest of us, can clearly see her greatness. It takes a certain
kind of special to store her vast DVD collection in alphabetical order; not
only that, but they have to be the right way up in the box, with the titles laid
horizontally. They have never all lived permanently under the same roof.
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