Back in 2012, SNJ ran a parent story from a mum, Debs, who had been having lots of difficulty finding the right school for her son who had been diagnosed with Pathological Demand Avoidance (PDA).
Today Debs is back with an update about her son and how, after years more heartache she has honed her PDA parenting skills to leave the drama largely behind. She goes on to detail something many of you will find familiar whatever condition your child is diagnosed with: The struggle with her local authority to find the right school. It's a long post but it doesn't feel like it because it's a compulsive read and well worth sticking with to the end - maybe some weekend reading!
SIX schools for my son with PDA
Four years on from writing the above post, I feel it’s time to fill in some gaps and provide this update on the young man who now stands before me.
My son is thirteen years old; towering above me, his voice cracking, his hormones raging and puberty apparent. He’s quick to grumble against instruction but instead of the acute response and immediate meltdown, he will now incorporate humour and jest with me. For example, he’s on the computer and I would like him to be in bed by 9pm – So at 8pm our conversation goes like this…
“10 minutes darling, before bedtime”
He responds, “Your bedtime? I agree you look tired”.
I smile at him and say, “But you might look like me with wrinkles if you don’t get some sleep too”.
“Not a chance, I’m a teenager, so I’m not old like you”. He laughs.
I laugh and place my arm around him and repeat in a quiet voice, “10 minutes”.
He says, “Make it 15 and it’s a deal”.
“15 minutes then that’s a deal”.
“Thanks mum, you ok?”.
“Yes I’m very ok, I love you”
“I love you too”.
What has changed for us is that we share a deeper level of understanding, compromise, trust and acceptance. It has taken many years for us to develop this and with each passing day it is never taken for granted.
My behaviours and thinking had to change from the way I brought up my eldest child (who is now 16 years old). I had to, ‘think outside the box’ (a cliché I know, but true) and reinforce through positive instruction, e.g. "Your juice won't get spilt on the table," rather than beginning with the word “No, don’t leave your juice on the floor”.
The word NO was quickly a trigger for anxiety. I had to learn quickly, some accused me of ‘tippy-toeing’ , which in reality, was my understanding of ‘choosing the battles’. My tone of voice had to be true to both the expression on my face and the sincerity of heart or it was met with confusion from him, e.g. if my face looked angry or concerned, but my voice was gentle.
If I was upset with him, I said, “I look sad because I feel sad that you hit your sister.” Honesty is what he needed, but with an explanation to the point with a reason he could comprehend, without labouring the point. My son has a speech and language disorder, is dyslexic with a lower cognitive age and that means that his understanding is limited along with his patience, combined with anxieties of ‘getting it wrong’.
I had to keep it all simple and I still have to. Our home life is not without incident, but the balance has shifted, with far more blissful moments with laughter and when anxieties are rapidly increasing, there are greater examples of his coping mechanisms that come into play, resulting in de-escalation of the situation at a rapid and less aggressive pace.
The battle to find the right school
When I wrote in 2012, my son had begun at another school that was out of county and therefore necessitated boarding. Separation anxiety had some impact upon his return home at the weekends, further complicated by the fact that he shared this time between my home and his father’s. He remarked he had three homes and said he sometimes wished he just had one. It wasn’t necessary for long-winded explanations but for a simple examination of the positives.
Each of these environments gave him different experiences that I feel has helped him today. At school, he had to cope with daily life surrounded by some who understood him and others who did not. He struggled daily within the classroom setting, but enjoyed the outside activities. He enjoyed eating his lunches and dinners but preferred to eat alone due to sensory issues and annoyance from others around a table.
His weekly schedule of school activities fell into two categories: the ones he liked and the ones he hated. A handful of teachers, TAs and carers who were familiar to him and understood him (not necessarily understanding PDA) had learned by being open-minded in their approach and getting to know his ways. They were able work with him while the rest of the staff struggled to cope with his demand avoidance, anxieties and inability to sit still within the classroom setting.
This conflict of highs and lows, good days and bad gave him some great times and taught him many coping mechanisms, some I would name ‘manipulation’ others ‘escapism’. Unfortunately the balance shifted with staff reshuffles, redundancies, staff shortages, stand-in temporary teachers and replacements. This resulted in his positive days becoming fewer, with an increase in his anxieties and escalation of behaviours due to their poor understanding of his needs and the inconsistencies of his days.
His rapid departure came in May 2014 when he was playing football in the school grounds, slipped, fell and badly broke his arm. It took two operations and months out of school, during which time the school had restructured their intakes and an email landed, informing me that we would have to find him a new school to begin in September 2014.
Another school, more poor professional practice
More game play from the local authority SEND department, who tried to put finances in front of my son’s educational welfare. They had changed his case officer and I had not been informed of this, which I found frustrating as his case not being handled with any urgency or accuracy. On top of this, his new Statement of SEN had been updated and I was shocked to read they had strangely changed his primary need from ASD to EBD Emotional Behavioural Difficulties (EBD), now termed Social, Emotional, Behavioural Difficulties (SEBD) - a title which will now change again soon when he is transferred to a new Educationa, Health and Care Plan.
I followed this up by a very frank email to them and very quickly, his statement was rectified. Then to further fuel my distrust of their understanding of my son’s educational requirements, they proposed three inappropriate schools whose primary intake was for children with a statement of EBD (sounds suspicious).
Two of these schools were much further away than his last and again, out of county. Both had no experience of pupils on the autistic spectrum. The third school was closer to home; a boy’s school. I agreed to a school home visit from their outreach team, and arranged to visit the school along with my case officer to see for myself and to keep an open mind.
The home visit went well and my son was obviously anxious to begin with (he sat on my lap, which was met with raised eyebrows). But he soon relaxed and talked a little bit about his hobbies (Lego and Minecraft). On my visit to the school the following week, I was warmly greeted and met with the headmaster, the inclusion officer whom I had previously met and a member of staff who showed me around the school.
It was a very different set up to that of my son's previous school, however they seemed to have everything in place in order to meet the needs of their pupils including a nurture room, which I was told was a gentle way to start the boys off at the school. After a short spell in the nurture room, the boys would then be placed into the best-suited classroom according to their abilities.
During my tour, the only time I had doubts of suitability was when I was shown the complex reward system pinned up across one large wall outside of the boys' sleeping area. I found it extremely overwhelming and knew that for a child like my son who is unable to read or write and with little concept of time, this reward system would need simplifying and personalising. All of this was discussed later in our meeting and I highlighted his specific needs, most of which was in his Statement but needed further explanation.
I further discussed his negative school history and how they were school number five and how vital it was for them to make up for the failings of previous placements. The headmaster stated that his school had an impeccable record of having helped many boys who had been unable to manage in other schools who had then excelled in his. He raised the point about parent inclusion and the need for my input and support, using the example (reported to him from the home visit when my son sat on my lap) “Mollycoddling”, he said, “is unhelpful to a child who needs to find his own way”.
I was surprised at this, given my son’s experiences and the fact that two strangers had walked into his home and had started asking him questions. However, I set this to one side and felt I must work with the school and assist them in their way of doing things. When we spoke about behaviours the headmaster stated, “There are no behaviours new to us here, none which will shock and none which we have not seen before”. Blah, Blah, Blah… I had heard it all before, but with September looming and the threat from SEND regarding the tribunal process if I did not accept one of their chosen places, I must admit that it was easier for me to believe all the words I heard at that meeting. I knew straight away that this school, compared to his last would be a massive yearly saving for the LA, but I didn’t care about costs as long as they were kind, met his needs and made his school days a happy memory.
Back to the search for the right school
To cut a long story short, he was there for a grand total of three months before I was brought into the school for a meeting due to another temporary exclusion (December 2014). I was informed of the ongoing difficulties they were having with him. They admitted to their lack of autism experience and mismanagement of accepting him into their school in the first place.
During this period he had absconded from the school grounds three times, on the third occasion he had been missing for almost an hour and only found moments before my arrival and the police being called. He had been temporarily suspended twice previously, endured several detentions and had returned home in floods of tears due to some bullying issues and some inappropriate handling by support staff.
At this meeting I knew the school wanted rid of him and to be honest with you, I wanted him out too, the sooner the better. When school resumed in January (2015) plans were put in place to make his last few months stay as positive and fun as possible, while simultaneously behind the scenes working with the school to force our LA SEND to accept he had been inappropriately placed with knowledge that school's arm had been twisted to take him with me being plied with false promises.
After several permanent exclusion meetings, many emails and discussions later, my son was out and we were hunting for school number six. But this time I was taking no nonsense and would be in the driving seat.
A corner turned, thanks to a heavy hitter
A BBC South Today News report of our plight helped to generate a wave of support. This was combined with wonderful input from our local MP. The whipping stick from a 'higher-up' aimed at those dealing with our case all contributed to my strength and determination to get this bloody-well right!
Of course the SEND department tried their hand at presenting more inappropriate schools but this time we had all the evidence of past and recent failings and support to really push things our way. During his time out of school, the council had arranged for some home tutoring. These ‘odd-bods’ would turn up expecting to sit down at a table and teach my son; it wasn’t that simple and we got through three different tutors.
In the end I refused to accept any more distress for my son. We had fun times learning by living, doing and enjoying. During this period I visited a number of schools, some which I had previously looked at but had changed due to a new head or branched out with their intake to include a mix of abilities and disabilities and those children on the spectrum with PDA.
The National Autistic Society helped this to happen by fully acknowledging that PDA was very much on the spectrum rather than just a branch off it. I narrowed my school search down to two schools both in-county; one very much established autistic specific and one which was a newer provision called Big Bear bespoke education service. Both placements offered my son and those like him a flexible approach with a thorough knowledge and experience of autism and learning difficulties. After my son visited both schools, he decided which school he preferred. I think the deciding factor came down to the outside playground space.
Questions I'm often asked
After such a traumatic school history and upon finding a school, these are the most common questions I have been regularly asked so I am providing some answers that may help others but of course, every child with autism is different:-
- However did you cope, you must be such a patient person? In truth, I struggled with rejection (my stuff) but I felt unheard by so many for so many years – that hurt…a lot. All the while I felt I lacked self esteem, but actually my inner voice, self-belief and knowledge of my son was the truth and everything else was textbook or learnt behaviours, for instance those preaching about discipline, medication or I know best attitudes was their stuff and not my son's.
- What type of school is it? Autistic specific, mixed.
- Where is it? In county, a twenty minute drive.
- Is it boarding? No.
- How does he get there? Taxi paid for by council.
- How has the school helped him where others have failed? Okay, so it wasn’t perfect in the very beginning, but the school recognised this instantly and called me in along with others to give some specific PDA in-house training. They paid for several members of staff to go on the NAS PDA conference in London. They adapted his environment, they recognised his strengths, they accept him (FULLY).
- Why didn’t you want to home educate him after so many school failings? I don’t believe my son should miss out on what is his right to be educated in a school environment. I could get him so far, but the longer he is reliant wholly upon me, the smaller his experiences, the less chance he would have to grow outside of me. What if something were to happen to me, what then? I am a BSc qualified, BACP registered counsellor who gained experience working alongside adult clients (with learning disabilities) who have spent their lives bubble wrapped by loving parents who have died. Their lives are wrecked, pulled apart, unable to adapt and needing ongoing counselling support to get them through their grief. This impacted on my decision to keep searching in order to give my son the opportunity to learn coping mechanisms away from my unconditional love.
- How did you get it right? I may have learnt the art of patience, but the stubbornness I was born with.
Where are we now?
As of September 2016: He returned to school Tuesday 6th September and was looking forward to going back to school. He has made a couple of friends and he has a close bond with a girl who he describes as his girlfriend.
In his new class there are four children in total and all of them have been grouped together in this new class due to similar needs; all of them struggle in a classroom setting and need a hands-on approach to their learning. Their teacher is PDA-trained, very experienced with all kinds of children, abilities and disabilities. She encourages the outside classroom learning approach. She is passionate about her new class and their need for a new way of learning. She was the advocate and spokesperson to get the change happening in the school (outside of the tick-box Ofsted mentality). I know and trust that she will do her upmost for all of those under her wing.
This is my son’s story, I am merely the author (not a great one) but I write to encourage others, to offer them my support, to confirm to you my determination not to give up and give in. It is a tough road, you have a child who seems out-of-control, who appears angry, hateful, who’s unable to adapt into any environment, who causes you and your partner sleepless nights, who challenges your very being who takes you to the depth of despair and anguish.
But you are their one constant, they are so filled with fear and anxiety, they cannot help themselves, you are the only one who will make the difference to your child, your unconditional love will show your child that no matter what, you believe in him/her. Having said that, remember the highs are higher than any you have experienced, your sense of appreciation heightened and your clarity on what is truly important outshines your personal insecurities.
Yes, it's extremely hard, exhausting and often lonely, and yes I have cried night after night and even prayed to God for an answer (even though I'm not religious). In all honesty, personally, I found real comfort in asking the angels for help and only when I completely focused on the positive aspects of what I was seeking for my son, then there seemed to be a shift; ‘synchronicity’ happens.
For those of you struggling in the thickest part of the red mist, I would ask you to please believe me when I say, life moves on, as do our children in their own unique way. My scared little boy fighting the world before him or running for cover is now thirteen years old; he towers above me; voice cracking; hormones raging and puberty apparent. I may be his mother and advocate but he has been and continues to be my inspiration, my passion, my teacher and my hero. He has enhanced my life and has made me look at myself - closely; my thinking, my inbuilt beliefs, my own behaviours. He has turned me upside down and inside out… and I am a better person for having been on this incredible journey with him.
So the next time it all gets too much and you feel overwhelmed fighting a system ruled by budget, bureaucracy and bullshit, just stop for a moment, breath out and remind yourself that…
THIS TOO SHALL PASS…
Trust me…it does xxx
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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