Fighting The System For SEN Support by Lisa Lloyd

Fighting The System For SEN Support by Lisa Lloyd

Lisa Lloyd is a mum of two neurodivergent children, and is the co-founder of SEND Reform England. She raises awareness on the reality of hidden disabilities and the realties of raising neurodivergent children, offering support and community to those on a similar journey.

Her debut book ‘Raising the SEN-Betweeners’ published by Ebury at Penguin Random House, is out now.

It charts the highs, the lows and the delightfully neurospicy – this book is for every parent raising the ‘in-between’ children in a neurotypical world. You can join Lisa Lloyd on the rollercoaster journey of raising neurodivergent children who don’t fit the mainstream but aren’t considered ‘severe’ either. Lisa has been there and is ready to tell all – from the confusion of the early years and discovering your child is neurodivergent, to navigating a school system that doesn’t seem to fit, and the daily frustrations of picking your battles (and losing most of them).

Ever wondered what would happen if you took your autistic three-year-old on a haunted ghost ride? Or what your reaction would be if your seven-year-old grabbed a stranger’s backfat in the changing rooms? Wonder no more! Raising the SEN-Betweeners is a very honest guide for all those parents in similar shoes, navigating the challenges, joys and hilariously unpredictable moments every day. If that is you, this book will make one thing very clear: you are not alone.

It’s a brilliantly frank, informative and importantly, supportive book, and it’s an honour to have Lisa share more of her experiences on my blog in her guest post below. Over to Lisa!

For those who don’t know me, I’m Lisa, known as ASD with a G and T on social media and the author of Raising the SEN-Betweeners. I have two autistic children and have recently been diagnosed with autism myself.

Raising my children has shown me what a battle it is to get any support when you have a child with additional needs. It can often feel like us parents are being ignored and like the world is against us, which is one of the reasons I created my pages online- I wanted a safe space for people to come without feeling judged. 

After my son’s diagnosis, I assumed we would get lots of support but, sadly, I was wrong. We had another battle on our hands: to prove that he needed more support at school. 

Many of us SEN parents are already running on no sleep, following strict routine schedules and battling to keep our kids’ clothes on. When I tell you we have very little time left to – essentially -train ourselves as lawyers and fight the system for support, I mean it. 

The problem is that your child usually has to fail in order to get the right support. We needed an EHCP (Education Health Care Plan), but we were refused the first time as the local authority would not even come out to assess him. 

So, we had to gather more evidence and show them that he wasn’t progressing without the EHCP. Even though he was verbal and had low care needs, he still was unable to manage in his mainstream school. The noise was too much, and he needed constant movement breaks as well as support with the work being set. 

But, too many times, the decision on whether to grant an EHCP or not comes down to how the child is performing academically. It rarely matters about the child’s mental health and wellbeing, as long as they are achieving in their work. 

The frustrating thing is, our children could possibly achieve so much more and do so well academically, if they were given the correct support in the correct environment for them to learn. Finding the right environment for the SEN-Betweeners is incredibly hard. 

I call them the SEN-Betweeners because they’re the ones who struggle to fit in anywhere. They can’t cope with mainstream schooling but are not considered severe enough for a SEN school. These children find themselves left in the middle somewhere, usually stuck in mainstream, but left in the corridors – excluded from class. 

Do I blame the teachers for this? Absolutely not. I think that most teachers are just as frustrated as us parents are and wish that more could be done for our children. But with so little funding, it’s impossible for schools to meet the needs of all their individual children. 

So, what can be done? While waiting for an EHCP to be decided, we need to be asking the schools to make reasonable adjustments. Reasonable adjustments do not cost the school any money and even the smallest of changes can help our children to manage better. School uniform for example, can create a lot of upset for children who have sensory issues. Allowing children to have a more relaxed uniform – in order to make them more comfortable – will mean that the child is not so distracted by their discomfort all day and is able to learn better. 

The government have recently been talking about how important school attendance is, and school avoidance is very high with SEN pupils. We need to start making school a more neurodivergent-friendly setting for our children and these reasonable adjustments are one of the first steps in making this happen. 

I also believe every mainstream school should have a SEN provision within it- a place where the child can go to take some time away from the mainstream environment. A place where they can feel free to stim (arm, hand flapping etc.) and move. A place that is equipped with sensory equipment to help them regulate again. How do I know that these provisions help? Because I have seen this with my own child, Finley. Before he was allowed to attend this SEN provision at his school, he was having meltdowns every day and was increasingly falling behind with his schoolwork. Once he was able to attend the specialist provision, he was so much happier and began progressing again. 

So, my message to any parents out there who might be reading this, is please keep fighting. I know it’s hard, but our children deserve to have an education suitable to their needs and they certainly deserve to be happy. There were many times that I felt like giving up and felt completely isolated on this journey, but I promise you, you’re not alone. There are some parents just at the beginning of their journey, parenting neurodivergent children, some at the end and many of us right in the thick of it… And I am one of those in the middle heading face first into the ‘terrible teenage years’. Please send help! 

Stay strong guys and keep fighting.

You can buy Lisa’s book here.

Photos credit: Andrew Hayes-Watkins.