"Piggyback"

We live in particularly strange times. Statistically 1 in 5 children in the UK suffer with mental health difficulties (2023, NHS England). 1 in 57 children in the UK are diagnosed with autism (2021, Newcastle University) and NHS, 2023 data has revealed that 140,000 children are on waiting lists for autism assessments. 708,000 children are diagnosed with ADHD (ADHD UK website, 2023) and one can only assume many thousands more on waiting lists. My children included. Lastly, NHS data (2023) obtained under the freedom of information act, highlights that 56,002 children in the UK are prescribed melatonin tablets for sleep ( April 2022).

Do you find these statistics alarming? These percentages are pretty high and alarmingly on the increase year after year.

With so family families within the UK caring for children with mental health difficulties one would assume it would be considered common knowledge on how to best support families.

One complaint I hear of the most as a SEND family support practitioner and as a mum of three beautiful neuro spicy parent is that of parental stigma. I also have experienced this first hand, over and over again. It becomes frustrating and over whelming when that parental stigma is received from people you need help from.

The approach taken with parents seems to be 'outdated'.

Parents, like myself, can remain in a very tricky and confusing place.

Parents are told by family support workers to attend parenting courses (the stigma in the name kind of says it all). However, if like me, we suck it up and attend. These courses teach us ways to handle neuro-spicy behaviours.

Here's a recap of a few of my own learnings;

NVR course = Behaviour equals communication. Always meet hate with love.

Autism Camhs course = Behaviour equals communication. Place reasonable adaptations where necessary. A need is a need regardless of diagnosis. Never force a child to go to school. Burn out mental health rest is required regularly. Mental health is more important than education at times. Masking is a condition with consequences.

Sendiass = Never force a child to go to school. A need is a need without diagnosis.

PDA society = Reduce demands. Get creative. Allow more time. Use non verbal cues. Treat meltdowns as panic attacks. Your child cannot control reactions to sensory or demand overload. Behaviour equals communication. Masking is a condition with consequences.

Young Minds = Allow mental health days to rest and recover. Open communication. Never leave alone. Safeguard in times of need. Behaviour equals communication.

Now this all seems pretty plain sailing to me so far but then we are told by schools that we will be penalised for poor attendance. We are told by schools that a sleep disorder or autism burnout does not mean that lates are considered authorised or understood as illness. We are told by schools that bad behaviour equals inclusion days or rewards taken away (such as no playtime with friends). We know through meetings that masking is not understood within schools. In meetings we can be spoken to in ways that are outdated, unnecessary and discriminatory. We are told that without a diagnosis there is no help available.

A confusing message. A fine line to walk along with no way of success. One side doesn't meet the other. The piggy in the middle is the parent and the SEND child. However, we only learned the other side from the parenting courses we were sent on (probably via the school).

I know first hand from working in schools that it's not the schools fault, directly. They are funded and working by Local Authority and Government instruction. They only wish for change as much as us parents do.

I've tried to think about this in some depth recently. The neuro-spicy children I speak of should be piggybacked, they should be supported when their legs ache not left behind. Parents and carers of neuro-spicy children should be able to go about their days feeling a sense of safety that their child is receiving that piggyback that is needed.

Instead, at least in my world, it can feel like we are left isolated, behind closed doors furthermore, judged for that.

School has become 'outdated' for SEND children in my opinion. We live in strange times indeed.

Sky high mental health statistics in children, on the increase year by year. Charities and CAMHs understanding what is needed for these children to thrive, yet Government inadequately funding schools to deliver with the added pressure of parental stigma (attendance penalisation and little support).

Unsupportive, outdated and discriminatory.