A most gentle mind
Every year for the past decade we have attended the Autism show and each year we meet more and more desperate and frustrated parents and carers. We meet the parents of young children who have been told by nurseries and primary schools something that they long witnessed but didn’t want to accept. That their children are quiet, don’t smile, don’t make eye contact and don’t appear to like to be cuddled. They don’t make friends easily, preferring to play on their own.
Diagnoses & Labels
The ‘child journey’ stories we hear are all too similar with their children doing well in wonderful Primary schools that are wrapping themselves beautifully around the child. But then the dreaded secondary transition to ‘big’ school and their little ‘Johnny’ goes off the rails. We hear parents/carers anxieties at the prospect of 30 pupil classrooms or the prospect of education on a one to one basis outside the classroom. We hear parents/carers who want inclusion for their children in mainstream classrooms and parents/carers who want their children in special schools where they will be provided specialist support. We hear about children whose Autism is intwined with co-morbidity and enough labels to terrify any parent: SEMH, ADHD, PDA and ODD which ends up becoming a debilitating system used to label the child. And how to get the help that these parents need? Well with the developing understanding of neurodiversity that should be straightforwardly enough provided by the Local Authorities.
This is the biggest issue that parents at the Autism Show tell us. They say that Local Authorities (LAs) do not make things clear. Their websites are impossible to negotiate, and they feel that due to the significant upsurge in Autism diagnoses, LAs deliberately obfuscate and refuse to help. The parents/carers describe how at the very worst times of their lives they feel alone and the systems in the Local Authorities are established not to reduce stress but to reduce costs.
Our 7 year long stand at the Autism show has become a focal point for a number of parents/carers over the years and each year they return to give us a progress report on their lives. We are a welcoming bunch, and we always want to help. We have developed relationships with several amazing organisations at the Autism show especially IPSEA whose sole remit is to offer special educational advice, guidance and support to parents.
Mark: in the beginning
We first met Mark’s (not his real name) mum and Nan in 2014. Mark was 14 years old then. His mother and Nan were at their wits end. Mark had a very disrupted secondary education due to his Neurodiverse condition and had been out of school and full time education since October 2012. Mark had a number of co-morbid conditions. He had severe difficulties with social interaction which impacted on his quality of life and ability to engage in education. He had low self-esteem, was highly self- critical and had significant difficulties arising from anxious and depressed thinking. He has been diagnosed with Asperger’s Syndrome and also with Mixed Anxiety and a Depressive Disorder.
He had since 2013 been accessing home tuition at 7.5 hours a week rather than the 25 hours that was his statutory right. Despite the low number of hours of direct tuition Mark had gained GCSEs at grade C in English and D in Mathematics. The previous year Mark had been on Anti-depressants for 6 months to attempt to alleviate his depression.
Fighting for a placement
Mark’s mother and Nan wanted Mark to go to a specialist school like ours but they had been told by the LA that it was not an option. We sent them off to IPSEA for advice and guidance. IPSEA suggested that the mother and Nan write a letter to the LA. The letter that was written was one of the most moving I have ever read.
In it Mark’s mum stated that she had not been the best mother and wanted to make up for that by giving him the best opportunity she could. She describes her son, Mark and his gifts (that I now know so well) with real affection. She acknowledged that she thought she knew what he wanted but had not asked him. After visiting our school her mind was made up. She then writes the most passionate paragraph in which she describes the failure of the local authority to provide the minimum hours of education and how the family had gone along with the LA advice for years but that the LA had let him down at every turn and that the part-time home tuition put forward as a protection for Mark had turned him into a recluse. The visit to our school and all the possibilities that it opened for Mark made his mother realise that the years of less than 10 hours home tuition had just succeeded in closing down the life that her son might have had. She mourned his loss of friendship experiences and memories. She said that by not providing Mark with a school he had no purpose, no future and zero motivation. She describes her love for her son and passionately appeals to the LA SEND officer that she loves her son as much as they love their own children in the hope that this would melt their hearts.
She had asked her son what he wanted and she begged the LA to give that to him after so many years of not giving him a full time education. She told them what he wanted; “He doesn't want to be cut off anymore, he has found an environment that he wants to be in and shown emotion for it. That in itself is incredible. I ask you to read my son's letter that's attached and for once offer him the opportunity to be happy and part of a community”. Finally, a plea was made to the LA to not delay any longer and not waste the time on fighting against Mark’s wishes and needs but instead recognise their collective mistakes and try to rectify those mistakes. Anyone who read this wonderful, emotional, transparent letter begging a LA to acknowledge the destructive consequences of years of mistakes and delay and put things right would struggle not to be emotional.
And the outcome? What followed was a two-year saga in which the LA fought tooth and nail against a placement in our Independent special school. During this time Mark’s mother and Nan never gave up and it was only at the literal door of the tribunal court that the LA gave in and acceded to Mark’s placement with us. Sadly, he was well into year 11 by then.
Our time with Mark
We had almost three years with Mark. Mark struggled initially and his social anxiety often got the better of him. He hid in open sight by withdrawing and burrowing into himself so that he would not be spotted. We could see through his camouflage in plain sight that he was gifted, talented, charismatic and we persevered. We pride ourselves on our schools never giving up and this was yet another great example of this. We have a twice weekly group process community meeting in which all of the KS3, KS4 and some KS5 pupils attend in our community hall. At the Group Process we sit around in a large staff and pupil circle and we discuss a wide range of local, national and international issues (Donald Trump comes up a lot and not in a good way). We talk about how we are doing, what’s on our mind, what life is like for young people today. As usual and in my case as at home, the young people do not feel that we are in touch with their world and its differences and dangers - we are too old and we’re not with it.
We don’t mind because they are doing what the group process is all about; talking about their lives and supporting each other and talking issues and frustrations out.
Mark started off by peeping through the window and then later walking around the edge of the group with a member of staff but each time it was too daunting so he kept going with his staff member and exited the room. No one minded as the routes to assimilating into the group are many and varied. One young person with severe anxiety sat in the sensory room for almost a full year with the door open a crack. He then graduated to sitting in the group. Mark did numerous walk throughs and then sat slightly outside the group with his back to the wall beside his member of staff. Mark however felt exposed as the only pupil sitting outside the group so operating on a safety and camouflage in numbers premise, he joined the group but again hid in plain sight. He hid for quite a time but then something piqued his interest and he said something. This was noted by the very clever and very well-trained group facilitators and they made sure to circle back to that topic in a later group process and we were off and running.
As schools’ proprietor I heard only good things about Mark from then on. I saw him occasionally and always remembered me to his mum and nan when I saw him. On one occasion I was invited to our school as a judge for Cultural week which is one of my favourite times. My role with other Central Services colleagues is to take a walk through 7 or 8 classrooms that have been transformed into a country with the history, music, sights, smells, clothes, jewellery, traditions and foods of each country laid on by the most remarkable pupils who alongside the staff wear the native costumes of their country and proudly tell us about different aspects of that country. This is all done in an atmosphere of festival with wonderful music and food being forced on you with reminders and multiple attempts to influence the judges voting. I remember Mark doing a fantastic tour of the classrooms and thinking that he was so much more confident and at ease even though it was likely that he had been highly anxious and probably not slept the night before.
Still, he had succeeded, and the staff and I knew to apply the correct amount of praise (not too much or too little to note his huge achievement). I met Mark later at a lunch set up for all the parents and siblings of all of our pupils who had been on the multi-national tour of the classrooms. There was some entertainment and then I saw Mark’s gifts and talents leap out at me as he had dressed up in an extraordinarily luminous green leprechaun outfit resplendent with bright red beard and an Irish shillelagh (large walking stick with knob on the end). All this largess was in honour of my presence but in that outfit, Mark did the most charismatic dancing, singing, twirling around the floor and I saw the new Mark. He had everyone in stitches at his antics and was really playing up to the crowd. It was a tour de force.
Mark engaged in making music, enjoying English and especially poetry and I engaged in a battle with the LA to keep him for another year Post 16. In the end I got two. Mark went from strength to strength and by sheer good luck I was present for one of his biggest moments. I was doing an inspection of the school that Mark was in and I arrived with my team into the hall where group process was happening so I could see if the school were delivering real and not symbolic pupil voice opportunities in our Group Process.
I was in for a treat. I remembered how much Mark had struggled in the past due to his anxieties about speaking in front of other pupils and staff and about feeling exposed. Imagine my surprise when Mark unexpectedly asked the group if he could read a poem that he had written which meant a lot to him and which epitomised his ‘Positive Journey of Change’ at our school and in his life. Those were his words and I could tell that I wasn’t the only one who knew what a momentous break through this was for Mark. Mark the previously shy, anxiety crippled young man stood up and read us a poem which rhymed beautifully and which was so moving and so apt that it had every pupil and staff member, myself included trying hard to hide our tears. The poem was about his biological family and his school family and how much both meant to him and how much both believed in him and supported him to be the young man he was today with the wind beneath his wings and a determination that depression or anxiety might be a part of his life forever but they would not stop him achieving. There was a moment then that I recognise I have never seen before in our 20 years history and the 3000 plus children who have graced my schools and I may never see again. 25 pupils and staff to a person and without any communication to each other stood up and gave Mark a standing ovation. I was in awe that these often narcissistic boys and girls who get so wrapped up in their own trauma and pain could suspend that pain and those egos and commit the most selfless and spontaneous act I had ever seen. The comments to Mark from some tough kids were heart-warming; “Well done Mark. I know how hard that was for you” was expressed in multiple ways and we all sat down exhausted after such an emotional experience.
For Mark it was a complete turning point and when he left our school sometime later with the right qualifications to get him into college to do music he interviewed with us and succeeded in getting a volunteer mentor role alongside college. Mark came back every week for two to three days as our first ever Alumni Mentor Volunteer. He became a peer mentor to so many younger children and not surprisingly but rather annoyingly he can weave a spell over them and get them to settle, or modulate their behaviour just by the promise of a mentoring session or even a 10 minute ‘touch point’. I watch teachers and teaching assistants envy him those skills but of course Mark has the advantage of being through the programme before and his Asperger’s Syndrome gives him gifts and talents including the most extraordinary and occasionally overwhelming empathy that allows Mark to perfectly attune and understand instantly the child he is working with. The greatest gifts do lie beside the worse wounds.
In June 2018 Dame Esther Rantzen formally opened our new East London school site with the help of Mark who was the MC for the day. Mark welcomed Dame Esther with such great enthusiasm and emotions over her incredible work with ChildLine that they both became overwrought and ended up giving each other the loveliest hug whilst tears streamed down their faces. I, never being one to waste an opportunity and what an opportunity, instantly knew I needed this amazing lady and role model to the Country as our Patron and since Mark had softened Dame Esther up I was honoured when she said yes and has been working with us ever since.
As for Mark I see much more of him these days and he comes to Central Services to meet with me regularly alongside our other Alumni Mentor to discuss how the Alumni Mentor programme is going and to sound him out on whether he is ready to be an employee. Mark will be joining us in the next month as just that, together with his fellow Alumni Mentor Volunteer. At times I stop and think about this young man’s journey and knowing him now as I do with all his gifts and talents but also his vulnerabilities I see the most awe inspiring and heroic young man who has fought against the most debilitating anxiety and depression and extraordinary social anxiety to join our staff team. Mark will have many challenges ahead but he has the certainty that just as we have zero exclusions at his school he also will never be given up on again.
These exceptional young people are a credit to their families and themselves and we will be lucky to get them as employees.
We will benefit from Mark’s most gentle mind for years to come.