The grateful SEND Parent and a cup of tea
Yesterday I learned that my 10 yr old autistic son, who attends an ASD resource base in a primary mainstream school, has been selected to be next year’s Leader of the School Orchestra. This is wonderful news for his confidence and self-esteem; it’s wonderful for us as his proud parents, too; and it’s a true testament to the inclusive nature of the school he attends. When I first heard the news from his teacher, I was in tears. Many parents would cry tears of joy at such news; however, parents of children with SEND would more likely cry tears of gratitude, as I did.
Why be grateful though? I know he has the talent for it. I know he has the skills for it. I know he has the commitment and I know he deserves the honour. What he doesn't have, however, is reliability, or punctuality. His orchestra rehearsals begin at 8:30am and as a consequence of the lack of local provision, he is entirely dependent on Local Authority transport to get him to the nearest school that is properly resourced for ASD. His transport, however, is only required to get him to school for the start of the school day, at 8:50am. Thus, he arrives late for every single rehearsal, disrupting the teacher, disrupting the children and, for a child with ASD, placing a high demand on him to transition and to 'slot in' to a lesson that has already started.
That the school are willing to overlook these things and still promote him says wonderful things about the school, their understanding of how to make zero cost reasonable adjustments and their understanding that life chances can be improved from such extra-curricular opportunities.
However, is this reasonable adjustment required because of his disability? No. His ASD doesn't make him unreliable or unpunctual; in fact, it does the reverse. In fact, this reasonable adjustment is only required because of other failings in the SEND system. The school staff showed such flexibility but will they understand the difference? Will they have thought about it?
I'm uncertain. In reality, my gratitude and recognition of what they have done prevents me from making any further demands of them or advocating for my son on an issue that is actually to do with his disability. Why, then, do I not raise my concerns with the Local Authority Transport department given that, through no fault of their own, children with SEND are being excluded from participation in before- and after-school activities as well as community events. Again, that is down to gratitude.
Having experienced inconsistency in timings, drivers and escorts; and having gone through the complaints process countless times, when you finally get something that doesn't leave your child distressed to leave the house you become grateful for the inflexible but just-about-working arrangements. Yet, for inclusion to work in society, it’s essential that these children and families be facilitated to participate on a par with others. This means being active and seen in their local communities but also active and seen at professional and policy events.
On 14th June, Achievement for All held a conference titled 'Every Child Included'. It was held at Newbury Race course and the content included a wide range of talks and perspectives and did include parent voice. However, the price to attend was prohibitive for parents, and parents, as a group, were not listed as expected delegates, and yet we know that parent engagement and involvement in their children's education is fundamental if outcomes are to improve.
When I raised this with Sonia Blandford, CEO and Founder of Achievement for all, it took less than an hour to receive an offer of free tickets for any parents to attend who wanted to; within 24 hours, the website had been updated to reflect this and to express the value of parent voice. This was impressive action and demonstrates that the will is there, if we can just challenge gently and raise issues that may simply not have been considered. Attending the ‘Every Child Included’ Conference gave an opportunity to me and other parents to raise questions from different perspectives and to have informal chats with stallholders about parent engagement and voice.
Nevertheless, the parents who attended were likely to be the only people there who were not paid for that day, who had to juggle complex childcare arrangements with no salary to cover it, and had to meet their own transport costs. So why am I unbelievably grateful for the kindness of Achievement for All to 'let' parents attend for free? Is it kind? Should I feel grateful? I think I should, at least in our current climate, for those willing to listen to feedback and act upon it.
On 22nd June, I was invited to contribute to a session at the Telegraph Festival of Education. Jarlath O'Brien, Headteacher of Cawarden House school and author of 'Don't Send Him In Tomorrow' had worked hard to increase the representation of SEND amongst the talks. As part of that effort, Jarlath asked Emma Dalrymple, Steph Curtis, Matt Keer and I to attend as panel members on the topic of parents as untapped resources. As VIPs, we got to drink posh tea from a posh tea box. I took my mum on my guest ticket to ensure we had someone to speak to; but there was no need. The room was of modest size but full and the people attending had chosen to hear, against a number of competing talks, what parents could contribute. We were delighted to find people coming up to us at the end to ask further questions.
This was significant. What it shows is that, at individual level and on the frontline, there is a real willingness to improve the lives of children with SEND and their families and that there is recognition of parents’ contributions to this. In fact, this was demonstrated later in the day through the latest research presented by Loic Menzies of LKMCo in his talk entitled 'Who cares about SEND anyway?' Sarah Driver from Driver Youth Trust, Tania Tirraoro and Barney Angliss from Special Needs Jungle and I all had a similar experience at the Whole School Send Summit in February when hosting tables on parent involvement. I hope this means people like Simon Knight, the new Director of Whole School SEND, are able to realise one of his priorities for the sector - to ‘find effective ways to bring society together to support better life outcomes for those with SEND’. I have been lucky enough to work with Simon and know that he will focus on outcomes but also action feedback. I am grateful for people like him who work in SEND.
I hope this means people like Simon Knight, the new Director of Whole School SEND, are able to realise one of his priorities for the sector - to ‘find effective ways to bring society together to support better life outcomes for those with SEND’. I have been lucky enough to work with Simon and know that he will focus on outcomes but also action feedback. I am grateful for people like him who work in SEND.
Next year perhaps they’ll consider not hosting the SEND talks in the only inaccessible building on the site - and perhaps one day they might order more inclusive tea.
Bethlyn Killey (AKA StarlightMcKenzie)
Bethlyn is a parent of a child with SEND and Executive Committee Member of Educational Rights Alliance (a grassroots organisation committed to advancing equality in education for children and young people with SEND)
You can find her blog at https://starlightmckenzie.wordpress.com.