The Joys of silly season! December 2019

The demands of Christmas are sometimes completely overwhelming.  Buying the right
stuff, in the right shops at the right time for the right people. But the difficulties go beyond that.
Many autistic people are able to feel the weight of social expectation. For me it feels like a
suffocating pressure squeezing me into the neurotypical world. A world where I know I will
struggle, where I have struggled and where I have more recently spent much less time.
The pressure to engage in traditions that mean nothing to me. I don’t believe in Christmas
in the biblical sense of the word but I don’t inflict my opinions on others and am not
planning to start today because not even that is the most important thing to me.
The absolute most important thing to me is doing Christmas in our way. Doing what I can
to avoid the fuss and keep our version of normality at the forefront of everything we do.
Just because its Christmas doesn’t mean that outside influences should be forced upon
us. Christmas is an event created by people who don’t fit into our normal and who quite
frankly would probably hate it and that's ok.

Despite being an adult and being able to make choices for myself I still feel that overwhelming weight of expectation. It stops me from sleeping well, from focussing on the things that are important to me, it disrupts everyone's routine.

And for our children these expectations are greater still so it is our job as parents no
matter what our issues are to make sure that these expectations don’t become coercion or
guilt trips for our children. It is very easy for others to think it is ok to "encourage" our
children to join in with, do or say something that makes them feel uncomfortable. We have
to stay vigilant.

For years and years I conformed to social expectations around this time of year.
Repeating the process year after year did not make Christmas easier for me, in fact as
each year went by it became harder and harder. Yet, it is only since I began my journey
towards empowering H that I have learned to empower myself.

So now I say no, I want to shout it from the rooftops, no, no, no, no more. I am putting an end to complying to traditions that mean nothing to me and by being brave enough to say no I hope I can empower H and other autistic people to be brave enough to put themselves first and keep themselves and their mental health safe.

Why would we spent so much time empowering H to have a voice only to have someone
coerce/guilt her into something that is purely based on the social expectations of others?
From today I am saying no more.

Rachel Tenacious

A little bit about me, I am a late
diagnosed autistic parent with three
children aged between 31 and 17. H is
my youngest child she was diagnosed
with autism at age 9 and selective
mutism at 15.
We removed H from the education
system in 2015 after she had what we
now know as an autistic burn-out.
The school system didn’t suit H at all
but home ed has been amazing.
Since my diagnosis I have begun to
share some of our experiences at
support groups and am hoping to
expand this out to schools, colleges
and anywhere people will listen

When is inclusion not inclusion?

When your child/young person with SEND who has struggled in the system starts a new setting, you have all the hope in the world that this time it will be different. To begin with it seems possible that you may have finally found the place that will genuinely understand inclusion.

For us, this was mainstream number four after four years of home ed. 

After attending a course specifically designed for home ed students for year 11, we decided that this was possibly the best chance for H at post 16 in mainstream.

H had to audition for the course she wanted to do in December of the year before she was due to start. At the audition she was told that the college would definitely offer her a place on a music course. With hindsight, that was the point at which it went wrong. The reason I think this is that from that point forward we should have requested transition plans would be made and transition started especially as H was already on campus 2 afternoons each week.

We got to spring and GCSE season took over, the music department was busy with their music festival which we visited one afternoon and enjoyed. We had meetings to discuss which level course would be appropriate and to review H's EHCP, still no transition plan was made.

At this point alarm bells should have rung for us, H was having a massive wobble about attending college but we assumed it was the stress of exams and the pressure that she was feeling.

It was agreed that the level 3 course would be most appropriate for H based on her musical ability. We looked at the syllabus online but didn’t get to speak to anyone about the expectations of the course.

Then we reached summer, there was an open day for new students but for some reason H didn’t get invited. We think that it was because she was registered as a student at college already but it was another missed opportunity to begin to familiarise H with the department she was due to join and the course she was due to start.

September arrived, H had passed her maths and English GCSE which was an incredible achievement. 

H was offered an induction day alongside all the other students. It was a full day but as soon as we told the staff that a full day would be too much the length day was reduced. Which was fine but it meant that H didn’t get access to all the information she needed. She was overwhelmed and stressed and couldn’t absorb anything that was said to her.

Then college started, H's timetable was reduced as a reasonable adjustment and if there were sessions that she couldn’t cope with she didn’t have to go but....

Is this inclusion? 

I have found myself asking this question many, many times over the past 4 weeks since H stopped attending college. Yes, after 4 weeks she stopped attending and there is no hope at all of her reintegrating.

Inclusion to me means making a course accessible to all students not offering a course and then simply expecting the students to fit in with the expectations. 

H had 1:1 learning support staff, they were not responsible for including her in the course, their role was to communicate for H when she was unable to and help her remove herself if she was feeling uncomfortable or stressed, to help her to move around college if she needed to and many other things but I don’t believe that it was their role to make the course accessible to H.

From the very first day H was put into a group and had to work on exactly the same topic as all the other students, she was following exactly the same programme as others, if there were things she couldn’t cope with she was allowed to skip them. But this is not inclusion, in fact, it is exclusion. By telling H she doesn’t have to do things she is effectively being excluded from parts of the course and from college life.

When things started to go wrong and I requested work for H to do at home nothing arrived, when I requested a meeting it became clear that the staff hadn’t met a student like H before and it was obvious to me that we had reached the end of the road with mainstream.

This is how it is, the course is the course and H either needs to fit in and cope with it or she doesn’t but if she can’t there is no alternative,  there is no plan B there is no inclusive version of the course that can be adapted for H so that she can attend and achieve.

I wonder if mainstream colleges can ever be truly inclusive?

There are courses that H could do with other disabled students but that isn’t inclusion, that is segregation!

Having a 1:1 to navigate the staff and the ups and downs of day to day is integration and is part of the way there but it's still not true inclusion.

Now we are looking at specialist colleges, can they be inclusive? I don’t know.

Maybe they can be inclusive in terms of developing a package that will support H to begin to build her confidence and trust in adults away from home. They maybe inclusive within themselves and that is brilliant, but H will still be excluded from mainstream, her disability has once again prevented her from accessing a mainstream setting and in my world that shows how far we still have to travel for our disabled children and young people!

Rachel Tenacious

A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15. We removed H from the education system in 2015 after she had what we now know as an autistic burn-out. The school system didn’t suit H at all but home ed has been amazing. Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.

           

Are we ensuring we are using a carrot and not a stick? Low Arousal: a non-aversive approach to behaviour management

“In crisis circumstances, we have to ‘ride out the storm’ and to use the sailor’s term, ‘batten down the hatches’. You are not going to be able to prevent the storm and there is no point in wishing it away!”.

Professor Andrew McDonnell’s new book, The Reflective Journey: A practitioner’s guide to the Low Arousal approach, is a fabulous ‘how to’ guide enabling families and professionals, supporting highly anxious and challenging people, to apply low arousal strategies in their everyday practises.

With child anxiety and mental health issues more prevalent than ever, families are being left significantly vulnerable from not receiving the provision they need in trying to raise a child with such challenging and individualised needs.

Working with both adults and children with extremely ‘challenging’ behaviour myself over the past 10 years, I have always had the belief that ‘all behaviour is communication’. Yet, the power of this book is that it instantly flips this narrative on its head and made me realise what Psychologist Albert Bandura had claimed: ‘all behaviour is about perception’. How the adult ‘perceives’ what the person is trying to communicate. As you may have noticed I have already referred to the term ‘challenging behaviour’ several times in this review; however, McDonnell takes a new stance and I am going to follow suit and from now on refer to it as ‘behaviours of concern’. This choice of words provides a more ‘neutral’ definition and therefore inevitably changes how we begin to observe these actions. 

As so many of the current literature in the Speech and Language Therapy and Psychology fields focuses on assessing ‘why’ a person is behaving in an aggressive or unexpected way, The Reflective Journey takes a refreshing approach by probing the reader to first look within themselves at their own actions. If we as parents and professionals are going to support the individual to adapt their behaviour, then it has to start with us!

But what is the Low Arousal Approach?

The Low Arousal philosophy advocates interaction, distraction, diffusion and physical avoidance strategies to manage, rather than change the undesirable behaviours. 

As an eternal student to my profession, I’m continually on the look-out for new therapy techniques to add to my ever expanding toolkit, but I have to be honest and admit that I am usually the person on the training workshop who is thinking, just get to the bit where you tell me the strategies, so I can ‘get going’ on the therapy side of things.

What was so thought provoking about this book, is the due to the two clear parts it has been divided into, the strategies to use with my students were not introduced until the second half and until that point had somehow, surprisingly, managed to restrain my own eagerness into first considering how essential reflecting on my own behaviour is, before trying to support the behaviours of the people I am working with.

I should have guessed that was the journey the book would take me on because the clue was in the name ‘Reflective’ and highlights the importance of ‘thinking’ before ‘doing’!.

I cannot remember a time when a work-related or ‘educational’ book as it were, kept me so engaged. By the end of the first chapter my head was already buzzing with questions about how my own actions, tiredness, tolerance levels and stress etc. over the years may have subconsciously leaked into my interactions with my students. Now, I do pride myself on my ability to ‘leave my personal issues at the door’ so to speak and to put my work face on each day – but I am only human after all! What was great about this book, is that it pulled all of those influential factors to the forefront of my Speechie brain and has since reading it, made them a lot more prominent when I am managing behaviours of concern. In my personal life, as well as my professional one!

I felt that the overall aim of The Reflective Journey was to empower any reader, regardless of experience, to be able to apply the low arousal approach by the end of reading a series of simple steps and I don’t feel it disappointed in achieving this.

Prof. Andrew McDonnell is an amazing Clinical Psychologist who has over 30 years’ experience testing low arousal techniques in countries across the world and after founding the Studio 3 organisation in 1992 is continually advocating for practitioners to move away from the more traditional ‘hands-on’ strategies towards a more humanistic and person-centred style. Low arousal is now the chosen approach in many services throughout the country.

In crisis situations our primary focus is always to ensure that everyone around is safe; though now, rather than just feeling we can merely ‘batten down the hatches’, this book has provided both parents and professionals supporting children with ‘behaviours of concern’ with easy, effective and empathic strategies to ‘ride out the storm’.

A final point to take away: Our children and students can be very hyper-vigilant, they are constantly on the look-out for any perceived threat, which inevitably increases anxiety and arousal levels. So always remember, they can sense how we feel about them! And how we ‘perceive’ them!

The Reflective Journey: A practitioner’s guide to the Low Arousal approach can be purchased from the Studio3 website for £17.99

https://www.studio3.org/product-page

Other products related to the Low Arousal approach and managing behaviours of concern that I would highly recommend include:

-          Managing Family Meltdowns: the Low Arousal approach and Autism (Woodcock and Page 2009) £12.99

https://www.jkp.com/uk/managing-family-meltdown-2.html

-          No Fighting, No Biting, No Screaming: how to make behaving positively possible for people with Autism and other Developmental Disabilities (Hejlskov Elvén 2010) £14.99

https://www.jkp.com/uk/no-fighting-no-biting-no-screaming-2.html

-          Managing aggressive behaviours in care settings: understanding and applying low arousal approaches (McDonnell 2010) £30.99

https://www.amazon.co.uk/Managing-Aggressive-Behaviour-Care-Settings/dp/0470512318

and don’t forget to check out Bo Hejlskov Elvén’s amazing Youtube series on implementing Low Arousal strategies

https://www.youtube.com/watch?v=iUUEItx-Aw0

Highly Specialist Speech and Language Therapist

Small Talk Speech and Language Therapy

natashahallam@smalltalk-ltd.co.uk

Carer or career?

Guest blog from Jodie Isitt

It started late on night, you know those nights when everyone is asleep but you daren't close your eyes because as soon as you do someone WILL wake up screaming. Life as a carer for three autistic children was busy and oh so tiring, but in those days I was surviving on a couple of hours sleep a night and pushing my body daily to meet the caring needs of my children whilst attending hundreds of appointments a year! Was this it? Was I destined to be a carer for my children all of my life? Would I spend my days researching new conditions, learning sen law and attending umpteen IEP meetings a month? I loved working, I have been a career girl all my life, starting out in catering and following the birth of my children becoming the accounts manager in my family building business. I was good at it. I enjoyed it. I love learning new things. Unfortunately due to the extensive health needs of my family and becoming increasingly unwell myself through exhaustion and stress I had to stop working. It was too much. It consumed me. To be honest if I had been employed by anyone other than my own family business I wouldn’t have lasted that long at all. Pretty sure I had become unemployable due to the time I needed to take off work just to simply attend meetings and see the children’s psychologists. It was a full time job and one that paid lousy! Carers allowance was something like £62.00 and I was working over 300 hours per week! Okay okay there aren’t 300 hours in a week, but when you’re a parent of three autistic children and a disabled fiancée there sure as hell needs to be because I was fitting in 300 hours of stuff in a week that only has 168 hours. Parents like myself are saving the government thousands with their caring - but alas that’s another post for another day way in the future. So there I was, tossing and turning unable to switch off and in that instant when everything was quiet just the soft sound of the trees blowing in the wind, my daughters 18 bubble lamps and youtube ocean music playing on repeat I had a brainwave. For months I had been on-line actively advocating for people to learn more about autism, speaking to adults, trying to make them understand, hell even some family members didn’t quite ‘get-it’ Advocating for understanding and acceptance and I realised that when I was a child I was NEVER taught about disabilities. Disabled people scared me, unnerved me, and made me anxious. I didn’t know what they were thinking, were they violent, why were they behaving in this unsociable manner? What was wrong with them? It wasn’t until I had my children that I fully understood disabilities as a whole and teaching myself everything I needed to know about them I could finally accept them for who they were. We don’t need to teach adults about autism, or disabilities or neurological conditions. We NEED to start teaching children. Thats where it will count. Incorporating awareness into their daily routine would be invaluable for generations to come. Creating the most understanding, diverse, accepting and kind individuals of the future would change the lives of millions of disabled people and what better way to do that than through storytelling using the most cutest and relatable of characters. A journey through mainstream school, using my daughter Lola as inspiration I developed the next children’s book series designed to help children understand and accept differences in the classroom. Drawing on her own experiences and her own difficulties I have written four children books using a Badger as one of Lola’s trusted friends to give the children the tools they need in order to be a kind and helpful friend to someone less like themselves without compromising their own wellbeing in the process. The books were primarily designed and written for children who don’t have neurological condition, a social story for the ‘normal’ child some might say, however following the amazing reviews and feedback from hundreds of customers its clear to me that they are more than that. They are a double whammy! They are not only helping children understand and accept other children. They are helping children understand and accept themselves. One child’s mum reports that she wore her ear defenders to school for the first time in months and was proud to be like Lola Rabbit. Another describes her child wanting to dress up, spending ages choosing an outfit complete with hair bow to look exactly like her. Some children have opened to their parents and admitted they felt like Lola, lonely and scared of the noise. Giving parents the opportunity to finally realise what kinds of things they were struggling with in the school environment. I am so excited about this project, and I cannot wait to release the second book - Lola’s wobbly lunch time where Lola gets very stressed out during lunch time and has a breakdown in the lunch hall describing the smells and sounds and the extreme busyness of the lunch hall dev

Additionally and because I'm not 'professional' I asked expert speech pathologist Molly Dresner and Occupational Therapist Lucy Bates to contribute in the book and they have done amazing job at explaining the difficulties and giving teachers and parents ideas on how to help children should they present like Lola Rabbit. This is a very unique addition to children's books and I am super proud and honoured to be able to bring these books to schools and homes near you!

Jodie x

Autism with love publishing

GCSE Brain dump

Today is the last day of exams for H!

I have fulfilled my duty to get her to college sixteen miles from our home by 9 am five times in a three week period. I consider that a massive achievement just for me never mind what H has achieved. And lets not forget that this incredible person fell out of the school process in 2015 having made virtually no measurable progress in the 3 years previous to that.

Diagnosed in with autism in 2011 and with other diagnoses to follow H is designated as having “complex needs”. Those complex needs could not be met by three mainstream schools in our local area and yet pushing for specialist provision never felt quite right either. Did we want to send H over 25 miles away at least, each day? Did we want to potentially limit her opportunities in the area that she excels?

We decided not, we slipped into home ed and found our home as it were. Home ed has been everything and more and I will never for one minute regret our decision to jump in to it. In fact it was more like throwing ourselves into it because I believe that to get the best out of home ed you need to be committed to exploring every opportunity and take chances with experiences that might be way outside your comfort zone.

But, there is always a but isn’t there………

We could not have got H to GCSE point without a team of people who have supported us and without HO [named this for privacy] college. The first blocks in the team are most definitely the members of the home ed community in the West Midlands who trod the path into the course specifically designed for Home ed students and who ironed out some of the potential issues before we even got there. Next came the SEND team at HO who not only listen but who seem to relish our outside the box thinking and instead of challenging us have come with us and risen to the occasion and done exactly what we have needed them to do. Then there is B, H’s speech and language therapist who alongside us co produced selective mutism training for the support staff and SENCO at college and A from the autism team who is rapidly becoming a fantastic advocate for H and who is enabling her voice to be heard [not just from me for a change]. J is the EP who is quietly in the background but a presence who gives us confidence to continue to push hard for what is right for H, to keep H at the centre of the process and to ensure that H gets every possible chance to reach for her goals. Then two great tutors who with the amazing support from H’s LSA [another A] have become confident in understanding H and who have gently and kindly stirred her brain into action and given back some of the confidence that H had in her abilities when she was a pre schooler and which had somehow got lost during her eight years in school. Finally and definitely the most important member of team H [except H of course] is C who is not only our friend but also the person who reminded H that actually learning doesn’t have to be torture and that she can move past the trauma that was inflicted on her by people in her past who will remain nameless because apart from this one sentence they do not belong in this blog and are well and truly gone out of our lives.

C for the first 6 months of working with H didn’t even expect H to touch a writing implement, such was the level of her fear around formal learning, maths in particular and yet within a few sessions he was telling us that H has a good maths brain and that it was the trauma which had led to her complete lack of faith in herself that was her greatest barrier.

It has taken all of these people plus of course me and H’s dad and a whole host of other people in our lives to get H to this point:

And so somehow we reached May of year 11, the start of exam season. Of course exams are stressful and the point of reasonable adjustments is to hopefully level the playing field just enough to allow people with SEND to stand a chance at accessing them alongside their peers.

But in my opinion GCSE’s have been made inaccessible to autistic people due to their unpredictable nature; for example, the second English Language paper is H’s stronger paper generally because there is usually an opportunity to debate or argue a point, something she excels at verbally at home and more recently has shown great flair at on paper in mock exams. However this year the examiners decided to throw in a curve ball and ask for students to argue a point about whether looks or intellect is more important. This for many teens was a peach of a question and twitter was full of comments about the Kardashians and Love Island and how they had used examples of these in their exam. For H and other autistic people who have absolutely no interest in the world of celebrities this was catastrophic. H can argue all day about the benefits or not of school uniform, of holidays in term time and in fact of school and the system in general but creating an argument around looks vs brains was so far outside her comfort zone that she fell apart.

By the time I collected her she had utterly convinced herself that she had failed, was physically unwell and went to bed for two days when we got home. There is nothing I can say to her to make her feel better about it, she so badly wants to get her magical “4” and while this doesn’t matter to us because we know she can retake it, it matters massively to her especially as in her most recent mock she got a high 6 and she just wants to be done with it.

For anyone who doesn’t understand why this would be so difficult for an autistic person I will tell you. Autism can impact on a persons ability to picture in your mind things which occur everyday for many people, things which matter to some people but don’t to you, means that anything that has never been experienced is a complete unknown to many autistic people and this extends to exact experiences not just similar ones. Thinking about how looks might impact on a person has never ever come up in our home or our life, we preach acceptance. We don’t spend much time on celebrities because to us they are not real people, they don’t live real lives and only appear on mainstream TV which we give little time to.

But not just English, maths too can throw curve balls such as Deon with the 60 biscuits, the dude who wanted to paint tanks which disappointingly turned out to be the container variety of tanks not the army type, or Julie who did a coin toss 4000 times! I mean who does that? An autistic person can easily get caught up in the likelihood of that actually happening and the maths question is lost to the nonsense. Yet we have to put our children through this.

My duty is done, I have ensured that H has attended college and arrived in time for all exams. I have supported, encouraged and trusted H to do the job to the best of her ability and I believe she has done this 100%.

If H doesn’t get her golden tickets [Maths and English GCSE] then it will be simply because the exam system is set up to fail autistic people and not due to H’s lack of ability but my guts tell me she will always blame herself and how is that fair?

Rachel Tenacious