Hello, it’s been a while!

Can I just say this is not a blog about Will, Simon, Neil and Jay!! If you’re not familiar with those names then I’m talking about The Inbetweeners, a British coming of age sitcom!

‘SEN Betweeners‘ are children that can’t cope with mainstream school but aren’t eligible for/suitable for established special needs schools. It’s only a term I’ve become familiar this past week myself thanks to a good friend who is also a ‘Duchenne Dad’ and comes from an educational background. It’s now in the top one of my Google searches

Now for all of those readers that are familiar to my blog, you’ll know that the blog is my own perspective as a Dad dealing with the diagnosis of our son Alfie’s condition, Duchenne Muscular Dystrophy back in February 2018 (I’ve barely written a paragraph and I’m referring to my X-Factor ‘journey’!! – see past blogs!). It’s here to make you aware of his condition, how both myself and my family have dealt with different situations and most importantly, a bit of a go to guide to help other Dad’s in a similar situation feel that they’re not alone and can hopefully resonate with what I’m writing.

Seperation Anxiety

We now find ourselves on another ‘journey’ (sorry I can’t help it!!) and again, I feel it’s something that most people may not be aware of but I want to bring it to light. Our beautiful daughter, Mila-Rose is 12 years old. She has bravely navigated her way through Nursery, Reception and Primary School. Now we’d recognised for a good few years that something underlying as she suffered with separation anxiety when going to nursery and also following COVID-19 as we had to shield for 16 weeks during the first lockdown due to Alfie being classed as vulnerable. Even a sleepover at either of her Grandparents post COVID was like we were sending her to strangers.

Mila-Rose would get very anxious about anything that was upcoming at primary school, whether it was a lesson, a test or something that was supposed to be an enjoyable experience like own clothes day. She needed constant reassurance, for example, if it was own clothes day, she would require us to message the teacher the night before to check if it was ok to wear what she planned to wear. Thankfully, her teachers and teaching assistants at Primary were the kindest, most nurturing people you could have wished for and they recognised the support that Mila-Rose required.

Masking

Mila-Rose would smile her way through the school day (term is referred to as ‘masking‘ and is very common strategy used by some autistic people in particular girls) but behind her beautiful smile was a lot of anxiousness and worry. The smile that lasted the whole school day soon disappeared when she got into the car at 3.15pm and a mighty explosion of pent up frustration and anger was released out of nowhere. Mila-Rose was referred to CAMHS on several occasions but to them it was identified as ‘just a phase’, she was screened for ADHD initially (which again is very difficult to get diagnosed if you are a girl) but because she had no diagnosis, we couldn’t get an Education, Health & Care Plan (EHCP) for her.

Diagnosis

After almost 4 years of screening and testing, Mila-Rose was diagnosed with Autism and Selective Mutism, unfortunately the confirmed diagnosis was in August 2024. Mila-Rose had just left Primary School (Year 6) and was preparing to start Year 7 in a mainstream high school. No diagnosis and no EHCP meant that we couldn’t apply for a SEN school. Even though deep down we knew mainstream wouldn’t be the correct setting for Mila-Rose but as parents we didn’t really have much choice as there are no ‘in-between’ schools. We did our research, went to the Open Days where you are told how great the schools are, the SEN support is magnificent and you listen to the Head Boy and Head Girl tell you have they have thrived in the environment since Year 7!

We chose the smallest school in our catchment area but not without a battle as although it was our first choice school on our admission application, we were awarded our second choice so we had to go through a gruelling appeal process by submitting ‘evidence’ and sitting in front of a panel of experts who didn’t know her from Adam! Thankfully we were successful.

High School

Mila-Rose started mainstream high school in September 2024, we made sure said school and their SEN team were fully aware of all the support that was required. Initially a lot of adaptations were in place but ultimately the mainstream environment was proven to be too loud, too busy and too overwhelming for Mila-Rose. Huge anxiety and sensory overload led to burnout and school refusal, to the point where we had to force her into the car and once she arrived at school it was taking up to 3 teachers to convince her to get out of the car and go through the school gates. We made the decision that we couldn’t keep putting Mila-Rose through this day in, day out and sadly she hasn’t attended school since mid-December.

At the moment, we are home educating Mila-Rose to the best of our abilities and it feels a bit like 2020 all over again! SEN schools are generally aimed at children with severe physical and learning disabilities which Mila-Rose has neither.

If you know Mila-Rose or have seen our family photos on Facebook you may think, ‘She doesn’t look autistic’ or that ‘she seems fine to me’. Mila-Rose sits ‘in-between’ hence the term, ‘SEN betweener‘ – children that can’t cope with mainstream school but aren’t eligible for/suitable for established special needs schools. We came across this poem written by Lisa Lloyd, author of the book, Raising the SEN-betweeners, which is a perfect of description of children like Mila-Rose.

The burning question now is… what happens to the children in-between?

The perfect solution was if there were to be schools that cater for a range of specific needs and that children with additional needs would all be able to go to one that catered best for their needs. There they would work in smaller groups within a smaller more suitable environment. Now at the time of writing, the current SEN budget is £10 billion per year. EHCP provision for children with ASD and co morbid conditions had risen from 50,000 in 2015 to 150,000 in 2023. These figures will only increase. Is there enough within these stats to increase the chances of better support? Who knows hence why awareness needs to be raised but action needs to be taken.

No one wants to see a child struggling in mainstream, or struggling in any provision that isn’t right for them. Parents, like ourselves, are distraught being in this situation as their children are being very poorly served. In years to come there will no doubt be a Mental Health crisis due to the ‘in-between’ children not being fully supported or they will have sadly suffered in silence and be forever scarred by the lack of understanding of their situation.

I’m going off topic from the subject of this blog but my idea during my ‘Saturday Stroll’ yesterday was that there should be 3 types of mainstream school…

• Primary School – Reception through to Year 4 (Nurturing)
• Middle School – Year 5 through to Year 8 (SATS and High School prep).
• High School – Year 9 to Year 13 (GCSE and A Level – option to leave at end of Year 11 to pursue employment).

Current situation

I’m not going to go into too much detail as to where the situation is with the current school Mila-Rose is at, but we have recently submitted a Parental EHCP application and we’re doing our utmost to bring in the right services to support our family. Schools unfortunately are more focused on attendance. The EHCP application can take as long as 6 months maybe more so this takes Mila-Rose towards start of the Year 7 Summer term. Although we recognise that her education is of high importance, we feel that her wellbeing is vitally important. At the moment, it’s 2 months of not being present in school but would leaving her in an uncomfortable environment and not fighting on her behalf lead her to a lifetime of mental scars? Ask yourself, what would you do?

I do hope this blog has been insightful. You, like myself in the past, have probably walked past children out with their parent/s on a weekday and thought to yourself, ‘Why are they not in school?!’

Maybe, just maybe they’re a SEN-betweener.

On the back of this blog, I’m going to explore the possibility of setting up a SEN Betweener Parents Support Group for my local area. It will be a safe space for parents to not feel isolated in this situation and a place to get support, ideas, hints and tips in terms of the short/long term home educating. Feel free to share this blog far and wide. If you have any ideas or suggestions please feel free to leave a comment. I’d also be interested to hear from anyone outside the United Kingdom if this is also happening where you are or if it’s dealt with differently.

Thanks for reading.

Kieron x