By Jeannette | April 12, 2014
It’s been a busy Saturday for D, we headed off to have a fitting for her new glasses (déjà vue as we were there same time last week for her eye test) and then onward into town as we couldn’t get a direct bus home.
As with last week, town was busy, there were stares at D, who wasn’t being noisy, she’d either be on her ipad in her buggy or walking beside me, alternating between jumping (because that’s what she likes to do) or just holding my hand. “Live and let live” me’thinks.
So many people have said to me that the first time they are aware of autism is when someone close to them (family or friends) is diagnosed and with the numbers ever increasing, it’s becoming more necessary that those who might not be directly affected are aware. But how?
World Autism Awareness day did not receive widespread media attention, there was a segment apparently on Daybreak (a morning programme in the UK) and a couple of items on This Morning (a – as the name suggests – topical show, again in the UK) but the newspapers seemed to sideline it.
Is it because autism is, for the most part, invisible? Or something else? Is it because it isn’t high profile enough?
I don’t know the answer but with two lovely, diagnosed children on the spectrum, I want to increase awareness for them and everyone.
Sometimes a lack of awareness in those who should have the knowledge, understanding and empathy exists. It is very frustrating. My prime example was D’s experience through Reception and 1.5 terms of mainstream school. Despite a diagnosis and a statement of SEN, she was still described as “flighty” to my face by a teacher who really, really should have taken the time to consider why my anxiety-ridden girl was “flighty”. Thick skin time.
This Is Autism
Tonight’s guest post comes from @TheBeesleyBuzz, an honest, open letter which I can really empathise with.
Over to J’s mum:
This is one of those blogposts that I’ve written and deleted several times
over. We’ve never shared fully the story of J’s diagnosis and story and to
do so would take a book or two.
The biggest shock/surprise/disappointment for us was the education system and just how easy it was for them to not meet a child’s special needs and despite the laws and legislation, it turns out they can (and regularly do) get away with this.
I can feel a rant coming on, but I don’t want this post to become a rant of
what went wrong. Instead I want something positive to come out of J’s
So I’ve decided to address this to those teachers who are at a loss what to
do with the ASD kid in their class.
Remember the day you decided your career? You wanted to make a difference to the lives of children. You wanted to inspire, encourage and engage, didn’t you?
And now you feel disheartened. Disappointed. Defensive. When will those parents ever be happy? All they seem to do is complain. When will the
children sit still and listen to your voice that shouts ever louder?
And there’s one in particular, isn’t there? Seems incapable of sitting
still. Never seems to listen. Tries to escape at every opportunity. Hiding
under the table every day, hands cupped over ears. Screaming. Lashing out.
If only there was a way of getting rid of him. Once he’s out of the class – out of the school even – Things will be better. Things will be calmer. That will be best for everyone, you reason to yourself. ‘For the good of the many’ we’ll kick that kid out.
It’s surprisingly easy to do. As long as the governing body are on-side, there’s pretty much no-one that can stop you. Just exclude the ones giving you grief and all will be ok. It’s happening everyday. A quick google search
will find case after case of children with ASD who’ve been excluded from
school. In fact, in our county, a few years ago, the figures showed that
over 91% of primary school exclusions were of children with ASD and related
I keep hoping that figure will go down, but each week I come across other
parents whose child’s story is uncannily similar to ours. A different school. A different town. But the same story over and over.
And that’s where YOU can make a difference. You can quite literally transform that child’s life. And by changing that child’s life, you will be
making an incredibly positive difference to that child’s family too. And, of
course, you will be setting a positive example to the rest of the class – to
embrace and celebrate difference and support peers rather than exclude,
persecute and ostracise them.
But it will take courage. You may have to stand up against other teachers.
You may even have to stand up against the head teacher’s wishes. Remember,
the easy option is exclusion. But what’s the ethical option? Are you strong
enough to make the decision that is morally right?
Many aren’t. Remember that 91%.
Here’s what would have helped my son. Is there a child you know where this
would help too?
It doesn’t matter if you don’t know anything about ASD or special needs. All we ever wanted was for someone to care and be understanding of our son. If you can do that, then we won’t mind when things go wrong because we will
know your heart is in the right place.
Don’t pretend you know everything there is to know. A true partnership with
parents means regarding parents as the people who know the child best. Don’t
ignore them! When they tell you what makes their child tick – embrace it!
Listen to the medical professionals and make it your priority to do as they
suggest. Yes, it might mean making a few changes to the way things are done, but the benefits are often reaped by many children who will respond better to a different teaching style. And of course, you will reap the benefit of a
calmer child and a calmer classroom.
Make the rhetoric reality. There is plenty of talk about how each child is unique and how every child’s needs should be met. And yet few schools walk the walk. Is it possible for you to truly meet that child’s unique needs? If not, why not? Resources, time, attainment targets. What is stopping you from
meeting that child’s needs. The system is far from perfect and makes it near
impossible to truly meet every child’s needs fully. What can be done as a
school to move things in the right direction?
Does your school have a quiet place for ASD children to go to at lunchtimes
when they are feeling overwhelmed. For many children sensory processing
issues go hand in hand with ASD. We have learned that sometimes true
integration means having a separate desk, a separate quiet place for lunch,
support to help at playtimes. By making these things right for children, they can then be part of things rather than not coping and ending up excluded rather than integrated.
Don’t be afraid to ask for help. I have seen time and time again how schools
want to appear to be doing the right thing and so present one story to
professionals and a very different story to parents. Here’s what happened to
school applies for statement. Assessment for Statement refused with this reason given ‘J is getting on really well at school’. Whilst we as parents
were daily being told that J could get excluded at any moment because he
really wasn’t coping at school. Same child. Same school. Why the differing
story? Because the school wanted to appear to be doing things right when in
reality they were getting it very wrong.
The single biggest intervention that has the biggest impact on J is occupational therapy. That term might sound daunting, but the way I think of
it is that occupational therapy is something that just helps J do what his
body is supposed to do, but struggles to without OT input.
For anyone not familiar with sensory processing disorder, ‘The Out Of Sync
Child’ (by Carol Stock Kranowitz) is a must read. When I read it, it suddenly dawned on me that J’s Sensory processing difficulties were the
biggest hurdle for him and so ASD strategies alone would never fully work.
Whilst input from an Occupational Therapist can be hard to come by (there are huge waiting lists) ‘The Out Of Sync Child’ has real practical suggestions you can put in place. You can also read up on sensory circuits.
Yes it sounds like a huge hassle to put that in place in a school setting, but the benefits can be mind blowing.
We home-schooled for three years because of how wrong schools got it for J and both morning and afternoon, we would start with a simple set of OT
exercises – press ups, star jumps, carrying a heavy load, balancing on one
leg, bounces on exercise ball. The difference? Focussed work, a calm
attitude, cooperation, and a massive improvement in handwriting.
To be honest, I don’t mind what my sons handwriting looks like, but it does
act an as indicator of everything else that’s going on inside his mind and
body. For J, neat hand writing equals calm mind and a ready to learn
I could write forever on this topic, as you’ve probably guessed. Ultimately
all I am asking you to do is not write my child off as unteacheable, unreachable or as badly behaved. There is a reason he is the way he is. We wouldn’t change him for the world. He has some amazing qualities. He even has incredible academic ability. If you’d taken the time to get to know him,
he could’ve been pushing your school stats sky high as he’s already at
secondary school levels of achievement despite only being in year 5 of
primary school. How has he been able to acheive this massive improvement?
How can it be that he is now a child that can shine, thrive, flourish.
That’s how his new teachers describe him you know. You might find it hard to
believe but they tell me his behaviour is impeccable and that he is a
pleasure to teach. Same child, different teacher.
So next time you come across a child who’s different, difficult, disruptive.
Remember you have a decision to make.
Sincerely, J’s mum