“IT’S AUTISM AWARENESS WEEK at the end of the month, remember, if you want to do a blog for it…”
“Oh, is it? When?”
“Twenty-ninth of March until… April… fourth, I think.”
“Hmm, yeah I’ll definitely do one for that! Will have to be quite relevant to raising awareness, I reckon- I’ll have a think!”
The annually-held World Autism Awareness Week is led by the National Autistic Society (the NAS). Its main goals are to remind everyone of the 700,000 people living with autism in the United Kingdom today, to educate those whom are unaware of the condition and to help make the world a better place for those on the spectrum.
One of the main ways they achieve this, aside from running various charity events, is by acknowledging and promoting work or school-based initiatives across the country. That is, to recognize the hard work and achievements of the numerous work centres and SEN schools across the UK catered for those with varying needs, (with the emphasis of course being on those on the spectrum).
Schools like the one my brother attended. As such, I decided to write a post on my brother’s years in education and how those ultimately affected my own path in life. Although, I should definitely begin by looking back at the huge impact my brother’s diagnosis had on our own local SEN school, and how it highlights the importance of raising awareness…
In my previous post, BRAWD AUTISTICO “Refrigerator Mother”, I discussed an incident during my brother’s diagnosis whereby a consultant suggested that his autism was a result of a general lack of love and affection from our mother, which I concluded in the post was utter nonsense.
Now, the reason why Mam was taking my brother in for a diagnosis in the first place was due to school staff’s reactions to his first week in nursery (which was part of the mainstream primary school I was attending at the time). My brother just wasn’t developing, on a cognitive or social sense, at the same rate as others his own age; he kept himself to himself, he refused to maintain eye contact with people, he didn’t engage in group activities and was still in nappies at an age when others were growing out of them.
Something just wasn’t sitting right with staff, so the headmistress- my headmistress, told Mam that my brother wasn’t suitable for their school and that she should take him to get diagnosed. During all this, no one was sure what to do with him, so he was given a temporary placement at the special needs unit in our father’s old primary school. He spent several months there before they eventually confirmed that he was, indeed, autistic. I received my little pamphlet prophesizing a dark and emotionally turbulent life with an autistic brother (as I covered in my first post, HERMANO AUTISTICO “Your Brother isn’t like Other Brothers”) and the rest, as they say, is history.
He was to go to the local SEN school. This was a huge shock to my parents at the time- life as they knew it had changed forever! It also pained them how oblivious and naïve they had been to autism and other conditions until that moment- growing up in a small northern town, courting in the Eighties, a time when political correctness and awareness was… different, my parents and their friends and families were no strangers to words like “mong” and “spaz”- if you were considered to be a bit thick, your mates would joke that you should attend the local ‘School for Mongs’ and such things… not saying my own parents had this attitude, more-so that such insensitive language was common (I mean, most British sitcoms from the Seventies shown on UK Gold today will make most millennials cringe, and they’re the ones they’re still willing to show us!).
We like to think that things have changed, but growing up, I too heard friends and classmates having a laugh over various conditions- the only difference was that I grew up with the awareness of how ignorant they truly were.
But that's is a topic for another post…
My brother’s diagnosis sent shockwaves not only through our personal lives, but it also had a huge impact on our very own vilified local SEN school; for until then, there had only been one individual with autism attending the school, and he was a verbal, high-functioning pupil. Then along came my brother- unable to communicate verbally, still in nappies, wouldn’t make eye contact, wouldn’t sit and listen, would scream and bite them if they tried forcing him to engage- they had no idea what to do, and he had nowhere else to go…
The staff were immediately put on Autism Awareness courses, and more emphasis was put on the use of Makaton in the school. By today, I’m sure the staff would be astounded to hear how different things were- it wasn’t until my brother was twelve years old, for example, that they introduced PECS (Picture Exchange Communication System) to the school!
With Year 6 looming (before PECS), it was agreed that my brother would spend that year of education in a special needs unit in another mainstream primary school, along with a handful of other pupils- which happens to be my housemate's (and old school friend) old primary school! He recalls visiting my brother’s school on numerous occasions, integrating with the other children. But he is of the same age as me, and wasn’t present when my brother attended.
I was too busy popping spots and trying to get hold of porn to notice at the time, but Mam recalls how much my brother “improved” during his time at my friend’s school. She found it hard to explain, but said that he seemed “more aware” and “responsive” and displayed fewer obsessive, or repetitive, behaviours.
And then, in Year 7, he was sent back to the SEN school. This, I find, is one of the unfortunate things about many SEN schools today- the age range goes from three right up to nineteen. As I shall discuss later, my brother grew weary of being around so many young ‘uns, and I have worked with other individuals whom were also ‘held back’ by this… in any case, all this meant that my brother had to go back, which in itself in not a bad thing by any means, but Mam did note that my brother quickly “went back to his old ways”, as it were. As the years passed by, he also picked up additional behavioural traits from other pupils along the way.
The debate of whether or not to, or rather, how much to integrate mainstream and SEN pupils is still a hot topic today. Whilst many mainstream schools now do have a special needs unit, or organize exchange days between pupils of partnering SEN schools, there are those whom are opposed to this integration, and I'm referring to parents on both sides when I say this:
“I wouldn’t want my child mixing with disabled kids- what if they picked up their bad habits?”
“Little Jimmy in a mainstream school? Oh, no… oh no! It would never work! What if he gets bullied?!”
Indeed, there have been plenty of negative interactions between mainstream and SEN pupils, and there’s no doubt we haven’t seen the last of them, despite the dramatic change in political climate. But surely, with segregation comes naivety, fear and taboo? I believe it’s about finding that balance between providing a calm, engaging educational environment for children with additional needs and allowing them to integrate and form friendships with mainstream pupils at the same time, which will benefit both sides.
‘Sides’, indeed. My saddest anecdote for this concerns a young boy in an SEN school I worked with (more on that later!) whom was playing with a young boy in a playground one evening after school. The other boy’s mother suddenly took her son by the hand and pulled him away, much to the horror of the onlooking autistic child’s mother.
It is precisely this attitude that we need to extinguish- a child learns by watching others, after all! Mam still sees the benefits of classroom integration today, though it has nothing to do with my brother’s behaviour;
“Oi! Iawn, met?” a young man’s voice bellows across the shop floor. Mam turns around, as does my brother, before raising his thumb at the man.
“Knew him in school!” the young man explains.
“Oh!”
The pupils from that mainstream school still remember my brother today, and with much affection, it seems- and that as a result of a single school year! Imagine the influence this may have had on those individuals when they came across people with various conditions as they grew into adulthood!
Nevertheless, my brother went back to the SEN school and remained there until he was nineteen, a minibus or taxi picking him up in the morning and dropping him off again in the afternoon, five days a week. I think my brother liked it, or liked the routine of it all, at least- he would pace in front of the house in the mornings, humming happily to himself and studying the grazing sheep in the field opposite. As soon as he saw the taxi coming up the hill, he’d bounce off down the alleyway like Tigger, lunchbox in his hand.
Most of my interactions with his school were limited to Christmas concerts. Every year, I would go watch my brother portray wise men, nightclub bouncers, donkeys and ravers- and although I may have held some degree of teenage apathy at the time, they never failed to make for wonderful nights that I hold forever dear.
I did, however, undertake two periods of work experience at my brother’s school. Again, I left with nothing less than cherished memories…
I remember being slightly taken aback by the wide variety of 'disabilities' standing before me the first time I went- I had never seen children in wheelchairs before, nor girls and boys with Down Syndrome, or even verbal autistic children… also, it was pretty evident even back then that my brother certainly wasn’t the only autistic pupil anymore!
I nearly got into a fight when a girl with Down Syndrome asked if I was taken and her boyfriend quickly intervened.
“I wasn’t trying it on, mate- I’m staff!”
I am still in touch with some of those individuals today- Facebook can be a wonderful tool if used right!
I’m not sure if it was because of this experience, but years later, I found myself working as a teaching assistant for an agency here in Cardiff. I had gotten a couple of ‘gigs’ as an exam invigilator in a couple of secondary schools and volunteered once a week in a primary school for behaviourally-challenged children whom were expelled from mainstream, but nothing stable. Then one day, I received a call to cover a shift in a primary school that was exclusively for autistic children.
I had a wonderful day- the teachers found it harder to get me to come inside at lunchtime than the kids! And then, by stroke of luck (for me, anyway), a member of staff broke her thumb when a pupil accidentally pulled it back and I was asked to cover for the remainder of the term! I was eventually given a full-time contract and worked there for a couple of years before moving on to a secure unit/boarding school of sorts for autistic teenagers on the other side of town, where I worked for yet another couple of years before moving on again.
I now work in family mediation, but I do believe that by having an autistic brother and by visiting his school, I was destined for a career whereby I ‘helped’ people in some way. Career-wise, I was at a loss at the time, but when fate took me back to an SEN school, I came to the realization that, whatever I did, I’m happiest when working with those whom are considered ‘vulnerable’, or in need.
However, I also came to the realization that if you do want to make a living by helping people, then you’re never going to get rich! I praise others, particularly those whom have not been affected by a condition or disability themselves or have a family member with a condition, who do choose to help people, and for all the wonderful work that they do… we always hear about abuse and neglect in the system, but rarely of the success stories!
Again, due to the wide age range, I do believe my brother was relieved to be leaving school. But he jumped straight into adulthood, finishing school on a Friday and going to work on the Monday- no lad’s holiday in Shagaluf for him!
My brother had an excellent learning environment growing up, despite the challenges, and I haven’t even mentioned all the horse-riding, the indoor swimming pool, the sensory room, the school balls and day trips! To be honest, I dread to think what the world would be like for individuals like my brother without SEN schools…
At the time of writing this, a new debate has emerged- do we say ‘Special Educational Needs’, or ‘Additional Educational Needs’? Like I said, we’re living in very different times to the world when my brother was originally diagnosed- who knows, people reading this blog in the near future may well wince and cringe at the terminology used…
…but it would’ve been a lot worse if I was typing this on an Acorn, I’ll tell you that much!
-YOUR TURN-
Thanks for reading.
I’m interested to hear your own story of sending your child to an SEN school, and to know what people think about integrating with mainstream schools…?
Also, what’s your stance on the terminology used when referring to SEN schools?
Diolch,
Russ
REFERENCES
Thanks for reading. I’m interested to hear your own story of sending your child to an SEN school, and to know what people think about integrating with mainstream schools…? Also, what’s your stance on the terminology used when referring to SEN schools? Diolch, Russ