The 80s was a fantastic time for many things – like music, films, fashion and John Thaw (people who know me will know my strong feelings about this decade.)
But when it comes to what we now call inclusion, this was the only the start of the journey for the education sector.
Under the 1944 Education Act, children with special educational needs used to be categorised by their disabilities defined in medical terms. Many were considered “uneducable” and labelled into categories which included “maladjusted” or ‘educationally subnormal” and given “special educational treatment” in separate schools.
In 1978, the Warnock Report was published, which was an inquiry looking into the needs of children with SEN. The 1981 Education Act followed which radically changed the conceptualisation of special educational needs, introducing the idea of SEN statements and an “integrative” approach – which later becomes known as an ‘inclusive” approach – based on common educational goals for all children regardless of their abilities and disabilities but focussing on independence, enjoyment and understanding.
This was just the start of various Acts and legislation that followed to demonstrate the progress in attitude when it comes to trying to include all children in a common educational framework and away from categorising children with SEN or disabilities as a race apart.*
So whilst in many ways I long for a return to the 80s, I also thank my lucky stars I am not bringing up my child with trisomy 3q11 mosaicism, a rare chromosome disorder, and complex needs in an education system that is only just starting to adopt such an inclusive approach.
Maybe it’s because of my tendency to live in the decade I was brought up in, that I worried so much about our decision to send Marigold to mainstream school. We had all agreed, therapists, carers and paediatricians, that with the right support in place, mainstream would work well for her during those initial years. She is sociable and motivated and we felt she would learn a lot from her typically developing peers. So having fought to ensure she had funding in place for a full time 1:1 for her support, why was I still awake most nights feeling like I was throwing her to the wolves?
In the run up to school starting, I went in to the school several times in neurotic parent mode to express my growing hysteria. The leadership team reassured me that inclusion ran through the ethos of the school and that Marigold would have the right provision in place and that I as a parent would be supported by the school.
But she was so tiny. And needed so much support with self-care. And couldn’t even speak. How would she be able to make friends when she couldn’t communicate? When she was so different?
After much agonising, we came to some sort of peace. We agreed that Marigold would have a very different social experience at school. She probably wouldn’t make friends in the same way as other children, and wouldn’t get invited on playdates and to parties, but that that was fine. As long as she was happy and learning and able to access the curriculum, that was enough.
As a highly sociable person myself who thrives on such experiences, I guess the thought of none of that tore me apart a bit. I conjured up a number of distressing scenarios, imaging her sitting on her own at playtimes with her 1:1 gazing longingly at the other children playing together so happily. Catastrophizing such scenarios is something the SEN parent really does excel at!
She settled into school life slowly, doing part time days. That first term was hard for many reasons. It was such a different experience to my typically developing child starting school. There was much settling in to be done, new therapists to brief, transition meetings, the juggle of having to shuttle between school and home multiple times a days for two different pick up times on top of the already jam-packed schedule of appointments. As we all know, school is an enormous petri dish, so within the first week she become ill with a classic respiratory number and was off for a week. “This is it.” I thought. “This is going to be school life for her.” For a time, I struggled with overwhelm.
But we were lucky enough to be in a class with the parents of siblings in my son’s year who knew us well, and I felt unconditional support from them all. Then a few weeks in, I decided to bite the bullet and send a message round the class chat to let them know about Marigold’s disability and to say if they or their children had any questions I was happy to chat about it. And the response from that parent group was so overwhelmingly positive and inclusive, I wish I had printed off that entire thread and wallpapered our lounge with some of the lovely comments. It instantly made the journey so much easier being out and proud about her condition and the challenges and knowing that I had their support and understanding.
By the second term strong bonds had started to form between Marigold and her friends. I first witnessed this when accompanying on a school trip when I had a small entourage of five hanging off her buggy wheelchair and had to mediate a hot political debate about who got to go in the lift with her. Then at reading morning when a circle of children formed around us wanting to do the Makaton signs to the story we were reading. At the school disco when it all became too much for her, and her friends stopped dancing to come and sit on the side with her holding her hand until she was ready to go back onto the dance floor. I see it every morning when she is mobbed coming into the classroom like some kind of rockstar. Far from never being invited to parties, she seems to be at one every other weekend where her friends are always on hand to help her access what she needs to, to try and coach her onto the bouncy castle or sit with her when she finds the concept of a clown a bit too much to bear (who doesn’t). Her friends know exactly how to involve her, how to support her, how to help her, how to be her friend. They see her simply as Marigold, who needs that bit of extra support, and that is something they do intuitively and without thought.
Oh how I underestimated those little people!
(Friends by the way is her favourite Makaton sign.)
So Marigold adores school. She has meaningful friendships. She is part of something. She gets love, care and learning. She is included. And what do her classmates get?
Her classmates are understanding at a young age how to relate to disability and difference. They are understanding how to care and support for someone who is more vulnerable. They are learning ways of communicating with someone who does not speak (most of her friends now sign better Makaton than us.) They get consistency and loyalty, for if you love Marigold, she loves you back wholeheartedly and unconditionally. As one parent put it: “Marigold is the heart of the class.”
So one year on from feeling like we are throwing our unique little girl to the wolves, I can safely say that school is her happiest place.
And why has it worked?
It has worked because her school truly believes in inclusion. It is not just a box ticking exercise. They passionately care about ensuring that Marigold has access to every opportunity her peers do and in creating a setting where every child is included. It works because of a leadership team who drive this ethos from the top down, because of a SENCO with huge passion and professionalism, an amazing teaching faculty and dedicated 1:1s who care for her in the way she needs. It works because of a supportive and positive parent community and because of the real inclusion heroes – the kids themselves. There is so much that we as adults can learn from them.
As every SEN parent knows, situations change and it is hard to ever see a completely clear path ahead. At one point, we may to consider a more specialist setting for Marigold, but at this moment in time, being at school with her friends is undoubtedly her favourite place. Watching her friends help her round the obstacle course at Sports Day this week, watching the older kids cheer her on and high five her when she had finished, watching her grin from ear to ear because she was part of it all, was a moment of perfect inclusion.
Written as a thank you to our girl’s school and staff for support this year and for other parents currently facing the mainstream school dilemma. Inclusion can work so beautifully when executed in the right way.
This week is Chromosome Disorder Awareness Week. For information and support on Chromosome Disorders, contact Unique, the Chromosome Disorder Charity. www.rarechromo.uk
Marigold is part of Zebedee Management, a specialist talent agency redefining the perceotion of beauty, disability and diversity. For booking and enquiries contact Zebedee Management: https://www.zebedeemanagement.co.uk/marigold-d
You can follow our journey on Instagram as well on marigold_zebedee