The SENbetweeners

What happens to our children that are caught in the middle?

EHCP. Four letters that can instantly make SEN parents feel stressed, overwhelmed, angry, sad … the list goes on. There is so much controversy out there that surround the SEN system and a huge part of that is Educational Health Care Plans. They are complicated to fill out, extremely long, not fit for purpose for a lot of children and young people, hard to access, have an excruciatingly long time frame to process, which all makes a recipe of negativity for all those involved with the child trying to access one. No parent would put themselves through this gruelling process unless they absolutely thought it was necessary for their child to have an EHCP, so why do the local authorities make it so difficult? After all, an EHCP is there to help our children isn’t it? To give them access to resources they need, all to make their life in education that little bit easier on the child and in turn, the teacher. As SEN parents, we have heard all the excuses in the book – not enough funding, the Covid impact, staffing issues, overwhelming numbers … you name it, we’ve heard it but as they continue to echo this narrative to parents all over the country, our children continue to struggle in education, having a lasting negative impact. The number of children currently out of school and being home-schooled in England has never been so high and a scary percentage of that is SEN children. Whether this is because there are no places in the limited specialist schools available, mainstream schools can no longer offer the right support for a child or mental health taking its toll on a child, there is no excuse for a child to not have the right to education in this country in 2025!

Now, I would like to make it clear that although the application process when applying for an EHCP for Billie was stressful, I count us lucky that we have had a draft published within a small-time frame. There were of course a few hurdles such as waiting for an educational psychologist appointment, the time frame exceeding the maximum time that was statedfrom application to receiving the draft and the ridiculous hurdles you must jump through just to get a draft published. So, although I am not taking for granted that we are the “lucky ones” that it only took approximately 8 months from receiving the paperwork to having a draft, it should not go without saying the process as a whole is just not fit for purpose. Billie has had a diagnosis of ASD and GDD for almost 2 years now and it has taken until now to have a draft – who knows how long we will now have to wait for the draft to be signed off and changed into a full EHCP. I found the application extremely stressful, trying to gather every bit of evidence you can imagine to prove that Billie does need extra support in school as it was made very clear that her diagnosis was not evidential enough! Not only that, but the application form is also pages upon pages taking weeks to complete and that was just a parent’s side of the application. Once I had completed my part of the form, I then had to wait for the school to fill in their part and once that was done, we then had to wait on an appointment from the educational psychologist which we have been waiting for since Billie was at nursery in Cyprus – aged 2!

I am more than aware that the education sector in the UK is more than stretched beyond its limits right now and I understand that without enough money nor resources, the job of the local authorities becomes extremely hard however what I do struggle to come to terms with is, in all of that, it is our children that are being left behind, forgotten and left to suffer when none of this is their fault. They did not ask to be born SEN, nor have they contributed towards the struggles on the system, yet they are the ones who left with this burden, made to feel as though they are not important or that they have no worth. It is not ok to treat ANY child as though they do not matter and that is what my biggest anger in with the system. The way these children are just forgotten about and left to just struggle through life is disgusting and it is not ok. Something needs to change and fast! I should not be writing this stating that I feel lucky that Billie has access to educational resourceswhen I started the process over 3 years ago but unfortunately, for some families, their journey lasts a lot longer. When are we going to stop looking at children who have disabilities as though they are a problem or a drain on society? We are making progress and for that I am thankful but there is still such a long way to go and when the issues are starting as high up as the government, what chance do we have to change the minds of those of us that liv in the general society?

Last week, I had a meeting at my daughters’ school with the SENCO to discuss Billies draft EHCP. Although it was a largely positive with the school and me agreeing that Billies targets stated on the EHCP are achievable, there was of course some negatives to take away. I mean, is there such thing as having a solely positive meeting regarding SEN? The school agreed that depending on how much funding the local authority supplied them to support Billie achieving what is outlined in her EHCP, they are confident they could accommodate her. Why the local authority still hasn’tdetermined a budget when we have a draft EHCP is beyond me but like I say, there is always some issue. That is a huge relief as Billie adores her school and she is so happy there … which makes this next bit slightly more difficult. Billie is currently halfway through her reception year in primary school. She has attended this school without an EHCP so far so we have no worries she can continue to progress there for the rest of the school year, however year 1 will be sightly more complex. I have always said that year 1 will be our boggy year. I knew that the jump from reception to year 1 is huge – both academically as well as developmentally. This is why I have worked so hard to ensure Billie has an EHCP ad therefore the right support in school before she leaves EYFS. The SENCO suggested that the jump to year 1 might be too much for Billie. With less resources available to her than what she has in reception and the change to the format of the day, the expectation, the national age group targets and the layout of the classroom, Billie would ultimately struggle in the environment and achieving what is the national expectation for year 1 pupils. Now I am in total agreement with this, and this is why I’ve been expecting some kind of disruption when Billie reached this stage in school. Two choices were given to me:

1. Billie goes up to year 1 regardless and we see how she gets on although we all know it won’t be the right environment for her.

2. She repeats reception.

Both these options come with pros and cons. If she goes up to year 1 as planned, she gets to stay with the class peers who she has built lovely relationships with and who have gotten to know Billie. We also get to see if she can cope with it, I mean after all, I have previously underestimated her, and she has proven me wrong. The cons of this are I don’t want her to struggle. She currently has such a positive association with school, I don’t want that to change, nor do I want to set her up to fail. If she stays behind in reception, she is familiar with the structure of the day, she can continue to learn in an environment that is set up for her (sensory room, outside area etc.) and we know she can cope however, legally, you can only hold your child back 12 months so if we do this, there is no going back for Billie. She would have to leave the school and find a more suitable provision – specialist school. This then comes with more complications. Specialist schools are very limited and have very limited spaces available which are not guaranteed to any child, regardless of an EHCP. Were also not certain that specialist provision is right for Billie. Its as though she isn’t “normal enough” for mainstream but not “severe enough” for specialist. This now leads me on to my point ….

What happens for those children in the middle? The SENbetweeners. Those that don’t really fit anywhere. I’m not just talking about neuro-diverse children. I’m talking about children with any disability. There are thousands of children like Billie in this country that just doesn’t seem to have a place in society. I hear things all the time that people say when talking about Billie – “At least she does …” or “at least she doesn’t ….” or “She could be worse” or “She doesn’t talk but at least she isn’t violent”. Why do children have to be only one side of the spectrum? No two people with a disability are the same so why do we try and out them into boxes of who they suit the most or good or bad? I know that one day, probably in the next 2 years, mainstream provision will no longer be suitable for Billie but why should the only alternative for that be specialist school? If that isn’t suitable, what then? Where does she go? Does she just loose out on gaining social skills, making friends and an education and must stay at home with me each day? Do I then not work and try and educate her at home which again, wouldn’t work for Billie. She is a child that groups things in her life with association. She associates school with her teachers, friends and learning and she associates me with being home and being her mum. Trying t combine the two just wouldn’t work for her. There needs to be a third option. An option for children such as Billie. I know that change is coming, and some mainstream schools now have a “SEN hub” attached for them for children such as Billie but they are a new type of provisions and are very few and far between. Trying to find for Billie in our catchment area and has space for her will not be an easy quest.

So, I’m going to leave this subject now and ask you all to think about all those children you see at the school gates during drop off and pick up and then think about all those children that are not there because they “don’t belong”. The next birthday party your child is invited too or when you child asks for their friend to come round for tea after school one night – think about those hundreds of children that don’t have that because they dot fit in. Those children who don’t have a school, a safe place for them to learn or to make friends because they don’t fit into a certain box that society has placed them in. You might not think that you can do anything to change the system and the truth is, you probably can’t but just you have the knowledge and awareness of what’s going on outside of your normal world, will make a difference and change.

Thanks for reading- this has been quite a long one and not the most positive so next week, I’ll try and keep it a little more light-hearted. Have a great week! Billie is currently off school with the chicken pox and I’m just waiting for Frankie to start showing some spots (it’s inevitable, right?) but I’m hoping she doesn’t get too poorly with it and we have an ok week at least!

Speak soon, xo