For the first time in a really long time I felt compelled to write today. The recent extremely negative article in the Times on Monday 14th October about funding being diverted to SEN kids riled me and coupled with what we are currently dealing with in our family I had to say something.
In the article, an EHCP was compared to a golden ticket. While I disagree with this statement in the context it was delivered, I have to say that an EHCP is somewhat of a golden ticket. So many families, so many children, desperately need the funding to increase the support for their children in school that an EHCP provides that I guess it is a bit like winning a golden ticket once you finally get an EHCP. Right now, my son Dylan is desperate for one.
His primary school is bending over backwards trying to manage his sight loss, autism and anxiety. He has meltdowns both mute and violent, every single morning and throughout the entire school day. He is unable to participate in class at all due to the background noise of his peers that he finds simply unbearable, the repetition methods they learn through and the anxiety of being in an ever changing busy environment where even the overload of visual stimulus is enough to make him choose to sit alone, which he hates but is still better than the alternative. He spends class time hiding in a custom built den with a box of sensory toys. His teacher does not get her breaks, instead staying with him during breaks and lunchtimes coaxing him to eat just one mouthful of anything. Would you work an entire day with no breaks? Sometimes not even being able to eat your own lunch? The school SENCO and the Pastoral Care Teacher both give up mountains of time to support him, prepare paperwork and work on ways to make his life easier. His wonderful teacher has to manage her class of thirty while also managing the extra needs of my son. The other children must have questions; they see what goes on with him day to day and it must be confusing for them and I imagine quite distressing at times. If you think your child is missing out because of funds diverted to the SEN child in their class or school, then you are wrong. By enabling SEN kids to have the support they need it is enabling your child’s teacher to do what she or he is there for; to teach, help, support and grow every single child in the class. By not providing the necessary support, the teacher’s ability to do just that is compromised, stretched and ultimately exhausted.
An EHCP would be a golden ticket, in the sense that it would relieve the extra stress on his teacher and the other staff, it would bring more normality to the other children’s school day, but mostly it would enable our sweet boy to feel safer and calmer and to learn.
Dylan has superpowers you know. As you start to read this paragraph you may not believe me, but you will by the end of it. He can only see with one eye and that eye wobbles uncontrollably due to Nystagmus. He has a Cerebral Visual Impairment caused by Bacterial Meningitis, Encephalitis and Sepsis when he was nine weeks old, which very nearly killed him. He has Autism that comes with crippling anxiety about his world and it’s demands. He cannot stand the sight of any food or drink that doesn’t fit with what his brain deems to be safe, meaning he only eats five different food items in extremely limited amounts. He is small, pale and tires incredibly easily due to the huge drain on his energy levels by the social, environmental and emotional daily demands that neurotypical people don’t give a second thought to. But he has superpowers; he has a photographic memory meaning he can memorise the layout of a place, the words on a page, the images on a screen. He craves the understanding of the how and why of everything. Ions, weather, dinosaurs, space. He knows more than I could ever learn. At three years old he wanted answers to explain where the sun went at night and subsequently learnt about the rotation of the earth. At four years old he explained electricity to me. At five years old he had questions I simply could not answer about why lava burns everything but the ground remains, burnt but not destroyed. At six he wanted to understand the planets and the stars. Now at seven years old he ponders about the first ever person and how no one could ever know who they were, because even if you were the first person you would never really know for sure if there was another before you. He feels noise. Actually feels it. In his ears, in his teeth, in his skin. His hearing is amazingly acute, perhaps to compensate for the sight loss? These superpowers are gifts, undoubtedly, but these gifts are given in some kind of twisted exchange for the standard social and emotional skills that most humans develop naturally.
As a parent, raising a child is a frightening, exciting, nerve-wracking rollercoaster of emotion and trial and error. We pay the price of raising these incredible little versions of ourselves with loss of sleep, endless chores and grey hairs and wrinkles and we are rewarded with pride, amazement, big hearts and unconditional love. I have two neurotypical children and two neurodiverse children. They are all wonderful and I love them all more than I ever imagined possible. They all try me, they all cause me stress and anxiety, they all make me feel like the most important person in the world. They all teach me the meaning of life and love.
As a parent of a neurodiverse child there is more, so much more to carry. Every time that incredible little boy sobs because the noise hurts his teeth, or screams because something that seems small and insignificant to me is not how he expected and he can’t process it, or a situation causes him so much anxiety he doesn’t know how to exist in his own body anymore and he thrashes and hits and flaps and cries, my heart breaks. Every time he explains something profound to me or questions something so deep that I’m amazed his brain can process it, the breaks in my heart are repaired. Every time he chooses to hug me, or mimes eating my kisses the cracks are filled back in.
Dylan goes into school early every day, to avoid the rush and minimise his anxiety. It doesn’t make it easy, but it reduces the stress just a little. This morning he woke up stressed, did not want to go to school and after a battle to dress him and get him to school, I left my baby screaming, crying, kicking and punching while his teacher held him to keep him safe. I had to leave, had to let her cope with him while I took his little sister into her Reception class, where she was the last one in yet again. The hardest thing in the world is walking away from your child when they are in a state they cannot control. I delivered my daughter to her class and then cried on my friends in the playground this morning.
Unfortunately, in order to get a ‘golden ticket’, your child has to be seen to be struggling, the school has to be seen to be doing everything in their power yet the child still to be struggling. Your child has to be unable to cope and this has to be evidenced before the powers that be will even consider an EHCP. Every ‘reasonable’ adjustment has to be made before they will even consider providing the school with the funding that would enable them to employ a member of staff to support your child or to purchase extra resources for them. I could have calmed him, could have stayed and sat with him and played out our ‘meltdown routine’ over the next hour, but ultimately that wouldn’t help him or school. It would have helped in this instance, but only this time and made it harder for them to provide the required evidence to support the claim for help. His sister needed me too, she says when he screams he hurts her ears and when he hits out she is often caught in the crossfire. She needs to settle into school and feel safe there and feel confident that her mum is there for her too.
We are stretched in multiple directions, my husband and I, every single day. When one child’s needs are managed quite often another’s are not. For example our eldest son misses out on support with his homework, our eldest daughter has to manage her own meltdowns alone if they coincide with Dylan’s, or vice versa if she is having a particularly bad one and our youngest daughter begs for my attention when a meltdown is in process because she is scared and wants to control the situation by keeping my attention on her.
An EHCP could quite literally be our golden ticket to easing those strains just a tiny fraction, as if Dylan was a tiny bit happier in school it would mean he could be a tiny bit happier at home too.
The saddest part is the teachers and professionals want to help, most go above and beyond to help. No one goes into those professions to meet budgets, or targets, or because they desire to have the best figures. They study and work to go into these roles to help, teach, grow and support children but the puppet masters sitting behind their desks in their fancy offices, detached from the real world and the issues they are making life changing decisions about, control the funds with an iron fist and in the end it all comes down to money. It was mentioned in the article that more and more children are getting diagnosed with Special Educational Needs, mental health issues and learning disabilities. When will they realise that children don’t need to change, but the system does? Stop punishing kids for being different, stop isolating them, excluding them, stop insisting they fit their brilliant multi-faceted shaped selves into the pre-determined square holes. Stop focusing on league tables and results, on exam scores and appearances and start listening! Help them grow their interests; a six year old with an innate interest in nature might be the next David Attenborough if they could focus on relevant subjects instead of being forced to split their mind between twelve different subjects where only three of them are useful to that child, a ten year old with a capacity for understanding anatomy might go on to develop cures for the world’s diseases if they were simply allowed to focus their learning. These kids are our planet’s future and should be treated as such, both neurotypical and neurodiverse.
So, whether you think an EHCP is a golden ticket or not, the bottom line is the funding for schools is necessary. Helping the SEN kids impacts the ‘normal’ kids too. It makes school better for everyone; children, staff and parents alike. Neurodiverse children need it. Neurotypical children need it. Children need it.