What’s the deal with specialist schools?

19 October 2019  |  Tamsin Kingsley

At the start of this term my Facebook feed was bombarded with photos of small people outside front doors in shiny new school uniform. Despite me still believing I have two babies, the time for us to think about school is creeping ever nearer, and it’s a minefield! Although not yet starting school until next year, we decided to move Lauren from her private nursery to being full time at a school nursery or preschool. Although I can now fairly intelligibly explain why and how we made this change, a year ago I was pretty overwhelmed with information and advice on nurseries and preschools, learning about things like stretched hours, wraparound care and our entitlement to government funded hours. I never realised how many decisions there are to be made, and that’s for a child without additional needs.

Izzy is only one school year below Lauren and so we are now back on the ‘where to send our child for the year before school?’ question, only this time we have fun things like inclusion funding and EHCPs (Education, Health and Care Plan) to consider, and every organisation under the sun beginning with SEN to coordinate with (SENIT, SENDIASS, SENSAP).

And then of course there’s the big question that most parents of children with additional needs will ask themselves at least once through their child’s education- mainstream or specialist school? When Izzy was born we were bombarded (both by professionals and friends/family) with positive stories of people with Down Syndrome, which was lovely. I would often hear that nowadays many children with Down Syndrome thrive in mainstream school, people would tell me of children with DS they knew or had heard of who were doing their GCSEs, or achieving in sport, music, drama etc. In my mind I built up the idea that this should be our goal- to get Izzy into mainstream education and for her to hopefully achieve far more academically than would be expected of a child with DS. I couldn’t see any benefit of separating her from her peers to learn among other children with additional needs, many of whom would probably be behind her developmentally. Surely that wouldn’t help her to learn and develop? Of course, over the past two and a half years, I have become much better informed in so many areas of disability, including education (and I realise I have a LOT more to learn still).

One of my main sources of information and education has been my new wonderful support network of parents of complex children. Gradually an increasing number of those new school photos on my Facebook feed are of children starting at specialist, or SILC (Specialist Inclusive Learning Centre) schools. This isn’t hugely surprising as my friendship group includes an increasing number of parents of children with additional needs. But what may have surprised me a few years ago is that these parents and children are delighted to be going to these schools, often having waited or fought for a place for a while. This is not a sign of failure or a second choice for them, but rather exactly where they want their child to be. Mainstream schools are doing an increasingly great job at being inclusive (compared to when I was at school at least) and putting measures in place to help those who may otherwise struggle to survive and thrive alongside their neurotypical peers. For many children this means a wonderful opportunity to be entirely integrated into ‘normal’ life from an early age, learning and developing social (and other) skills by watching and learning from their friends (as we all do). However, for others this mainstream classroom setting is simply not the right place for them, for any number of reasons. Specialist schools have staff trained in medical, physical, developmental and behavioural complexities and have more time to focus on specific therapies that might be needed.

As I say, I as yet have zero experience of either type of school, apart from having attended a mainstream school back in the day (having turned 30 this year i feel entitled to use such phrases), so all of the above is simply what I’ve read or been told (so could all be nonsense). My views on it, however, have been strongly influenced by my own experiences. Back in January of this year Izzy and I started attending Hawthorne nursery, which is run by the charity Leeds Mencap. You attend one day a week with your child, but there is a parents lounge to chill in while the children are looked after in a great room made to be suitable for all levels of mobility and ability, with a sensory room on the side. The great benefits to me as a parent will have to wait for another day, but I want to talk about the benefits to Izzy. When I started they of course asked about all her medical needs, and told me what care plans they needed copies of. They have different types of seating to suit different needs, and quickly adjusted a chair to give Izzy the right level of support. The food is prepared to whatever consistency the child can cope with. They are not phased by feeding tubes, oxygen, seizures, hearing aids etc. All the staff use Makaton and they work on each child reaching their ‘next steps’ in development using appropriate resources designed for children with additional needs. The children also play together, sing, are read to etc., just as you would expect.

To be honest, when Izzy first started I took all these things for granted. Her needs that to others were seen as ‘additional’ had to me become totally normal, so the fact that the nursery took them in it’s stride too didn’t surprise me. That is, until we started looking for a private nursery. As she receives DLA (Disability Living Allowance) Izzy was entitled to 15 free hours of childcare from age two, which we decided would give her a great opportunity to socialise and make friends, and also give me a bit of a break. So off I went to our nearest nursery to see what days they had available and when she could start. Only it didn’t quite go as planned. It was suggested to me that the room with her peers would be too busy and overwhelming for her, that she may be better in the baby room, oh and they would only be able to take her if she had funding for a 1 to 1 (which I repeatedly told them she was not eligible for due to her level of development). The hardest thing was that all this was without talking to, interacting with, watching or even asking me about Izzy. This was based on her label of ‘Down Syndrome’. Having been slightly spoilt by the level of understanding I found at Hawthorne, the reality came crashing down on me of how some people will always see Izzy’s disability before they see her, and how little understanding of her needs I will find in some nurseries and schools. Thankfully, as with schools, nurseries vary hugely with their approach to additional needs, and we are very happy with the nursery she now attends two days a week. But even here it has not been easy to get to the point of sending her. All through the summer various nurses and therapists were in and out of the nursery training staff on aspects of her care and developmental needs. They have learnt some Makaton and done training on Down Syndrome. Various care plans have been drawn up, trying to get a careful balance between staff understanding the serious nature of some of Izzy’s conditions and needs, without scaring them witless that they will do something wrong and hurt her.  After a six week wait her special chair for dinner time at nursery arrived just last week, having had to make do with a baby chair. And if we want her to go to preschool next September, we really should be starting to coordinate with that school to start the process all over again.

I suppose what I’m getting at is that Hawthorne seems to me a bit like the nursery equivalent of a specialist school, and a private nursery like a mainstream school. Both have their advantages and disadvantages, but one thing I do know is that it’s been much harder work to get Izzy established at her private nursery, for them and us (they have worked really hard to make it work too). I can’t tell you what decisions we will make in the future, and it’ll all depend on how she changes and develops as she grows up. But I do know that there are more important things than academic achievement. I want Izzy to always be somewhere she has friendships, fun, is able to understand and be understood, and is stretched to achieve her potential. I also need any medical and practical needs to be met. At the moment it feels like this is all possible in a mainstream setting, and I see and hear about her thriving among her peers when I pick her up from nursery. And I am willing to fight for inclusion and suitable support, equipment etc. if I feel that this is what is needed. However, unlike two years ago I am also willing to question at every stage where the best setting is for Izzy, putting my pride aside and putting her needs first. If she attends a specialist school at some point it will be because we and her think this is going to be a positive and helpful step forward.

I would love to hear of others experiences of mainstream or specialist schools for their child. It is a world I am only on the very edge of and want to know more. Give me your thoughts!

What’s the deal with specialist schools?
Tamsin Kingsley

Tamsin Kingsley

I am a 33 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 7 years and typical, and Izzy, 5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.

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