I have been contacted by many families who have children who are struggling in school. Some of those children manage to attend and conform best they can but are then exhausted and have meltdowns afterwards as a result of the environment, the social expectations or the workload. Some children find the demands during the school day too much and can't participate, and some struggle to make it out of the door to even get to school in the first place. School is not working for those children and we need those in the system to look at the reasons why and provide alternatives.
Some families have felt able to share their stories with me for this series of blog posts but for others, the pain and trauma is too raw, or else there is a fear of repercussions for the children. The examples published in this series so far are just the tip of the iceberg.
The words for this week come from a mother and daughter who have been failed by the education system. I am sharing some of the slides from a very powerful presentation that this young person has created because I believe they can help others understand better.
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Young person's slides:
SLIDE 1:
These are the things that I find hard…
So hard, they mean I can’t do anything…
I can’t think.
I can’t move.
I can’t speak.
SLIDE 2:
You might see me and maybe never know.
You might say, 'get over it!', 'You can do it', 'it’s okay, just try', 'it’s not that hard'.
I’ve heard all these things many times. I wish for just one day, you could feel what I feel.
I can’t cope with these things, not because I want to be different or difficult or have extra help to do what other people my age do.
It’s because I have PDA and I can’t do these things.
Often the more I want to do them, the less possible they become.
SLIDE 3:
I wonder what do you know about PDA?
My experience is:
- PDA or pathological demand avoidance is a type of autism. Not a separate diagnosis but a form of autism.
- It means I am autistic (not with autism!) with a demand avoidant profile.
- Demands make it feel impossible to do just about anything on a bad day. It feels like a million weights on my shoulders.
- These weights can cause meltdowns and shutdowns. They are two very different experiences and both are horrible.
- The weight of daily tasks make me mask. I mask to fit in until the weight is so great I break
SLIDE 4:
PDA and masking.
Masking is a way of hiding your true feelings. Usually because you don’t feel safe or happy and someone around you doesn’t like how you are feeling or understand what you need.
Masking is exhausting and adds weight to my shoulders.
But it makes other people happy because I’m doing what they want, even if it is making me feel very bad, sad and hurt.
Masking usually leads to a meltdown.
SLIDE 5:
Meltdowns
- Are not a choice!
- They do not feel good!
- Happen because of being overwhelmed, misunderstood and dysregulated.
- Release pressure from the weight of demands but do not make me happy. They are exhausting.
- I might hurt myself or someone else. I don’t want to, I just can’t bear the weight any longer and no one around me seems to see or understand. I can’t hold it in
Parent's words:
Our story, it now seems, is not so different to others. Other families who have been or are going through the PDA journey. All the signs were there. No one recognised it until we reached crisis point. That light bulb moment, wasn’t so much a 40watt bulb being switched on as a blinding fluorescent light filled room with a horn blaring. Yet, PDA remains unrecognised by those dishing out labels and poorly understood by the wider world.
We achieved the goal so many strive for, an EHCP, before a diagnosis. Things were that bad! We hoped it was about meeting her needs. Though sadly it wasn’t. School still didn’t understand, asking why she couldn’t cope in mainstream, why she couldn’t just ‘get on with it’ or ‘get over it’ or just be someone different.
She explains how she experiences it; ‘School’s hell, a terrifying place, where I have to mask and be someone else. Being held down by two or three adults from school, because I’m scared, leaves hurt and scars that can’t be seen, though the marks stay with me’. She says being with other autistic children isn’t always as helpful as it seems, because what triggers others and results in a meltdown, can then trigger her own meltdown as she’s hyper aware.
Our journey through education is similar to many other PDAers. We sit firmly in the 70% or more, not in school, though have continued to keep trying to dip our toe in to education, just to show someone, I’ve lost a sense of who, that it isn’t the right place for her to learn or just be her. My girl, has done most versions of education; nursery, childminder, small primary, larger primary, resource base and two specialist secondary schools.
However the trauma was too great, the understanding by others too little. Now, exhausted, she has finally found her place, a SEMH alternative provision through EOTAS and home-based nurturing space. The trauma collected along the way will live with us longer than the positives. The things that have shaped her, and me, are the punishments for not being neurotypical. Being shut out of school, out of the classroom, of being held down, of being unheard, of being treated as an outsider, someone ‘other’ and not belonging, have all left their mark. She calls herself an alien now, with fondness, it’s her way of making sense of the journey through education. Her view now, with love and understanding is that ‘It’s good to be different’. We are on the outside, outside of school, some friendships, those typical teenage years. Finding our own way through education, independence and life is leading to life lessons, educating others, sharing successes and building trust and hope because of the few that are good.
My girl talks about ups and downs of PDA (see her powerpoint) and there are definitely ups too. We have met some awesome, kind, understanding, thoughtful and downright amazing human beings outside of the formal education journey. They have helped her believe in herself, understand the skills she has, as well as the things that can help. She isn’t ill, she isn’t unable to learn, she is who she’s meant to be, a sparky, creative, incredibly kind PDAer. We have a wealth of sensory tools and an ever-growing understanding of approaches that help reinforce for her that she is brilliant just the way she is and does not need to be NT. I owe those that have heard our story, joined and supported us, my sanity too. For not being fine in school, it now seems, is a path trodden by many children and their families but understood by few in the system.
The next instalment is just around the corner, the sequel, the second time around services, this time with my son…
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It really helps if you can share any posts in this series on social media to help spread the message further. Over the coming weeks there will be more examples of families being failed by the system. They won't all be exactly the same as this one but they will all share common themes.
For any parents and carers needing help right now, I highly recommend the incredibly helpful Not Fine In School website (notfineinschool.co.uk). There are many supporters behind the scenes and in the linked Facebook group who have been through difficult times during the school years. Plenty of knowledge is being shared which could make a real difference to other families. If the system is not fit for purpose we need to shout that out loud.
For those keen to help make a difference, I also suggest looking up Square Peg. They are making great strides in terms of raising awareness across different media formats and also with legal challenges around attendance policies. There is a review of their book on my blog here: Square Pegs: Inclusivity, compassion and fitting in.
If you feel able to share your family's 'not fine in school' experience please email me at stephstwogirls@gmail.com. I understand how difficult it can be for families to talk about this topic and for some there will be a need to stay anonymous, which is totally fine. But this issue of the outdated, failing education system should not be brushed under the carpet any longer.
For the other posts in this series please click Not Fine in School to see all posts or the links below (short extracts given here):
Week 1 of Not Fine In School
"My daughter said school felt like prison. She felt six hours a day of constant concentration was too much – it literally frazzled her brain. Since deregistering our daughter her daily headaches have disappeared. She sleeps better as she isn’t worrying about the next day."
Week 2 of Not Fine In School
"Keep pushing her until she has a breakdown. We need to see it happen.”
Those are the words our SEN caseworker said to me when I told her my daughter's secondary school placement was unsuitable."
Week 3 of Not Fine In School
"At the beginning of Year 6 he started to school refuse and had a high level of separation anxiety. Over the next three months we struggled. I made him go to school, sat in school with him for hours, came back at set times to show him that I would come back, but nothing helped. His behaviour was very volatile and the school were struggling to cope. When I woke him up in the morning his first words were “I'm not going”. He would refuse to get up, or get dressed, would be very tearful and plead with me not to take him. I dreaded every morning as he did."
Week 4 of Not Fine In School
"She was given detentions and was sanctioned because of her attendance. I always complained and they stopped it but in every incident, more damage was done. She went to 70% attendance. I reapplied to CAMHS for crisis intervention as she was depressed and talking about not wanting to exist anymore. In December 2020 we were given medical intervention and I pulled her out of school. She is now in Year 9 and school have arranged for her to be on a part-time timetable."
Week 5 of Not Fine In School - Eliza Fricker, Missing The Mark
"As families we have explored everything to help our children to manage to go to school and yet the pressure and the anxiety of the school day are overwhelming for them.
This leads to enormous guilt on our part as we have failed to achieve one of the most basic parenting exercises- to get our children to school (we are also appalling at any textbook bedtimes too, in case you need to know).
So we live for many years as parents, as mothers, as women, feeling the guilt and judgement that we have failed.
We lose friendships and family who struggle to understand, our relationships become consumed by this, our careers often end, as we cannot manage it all."
Week 6 of Not Fine In School
"I was on a knife-edge the entire time he was at primary school, waiting to get that call to come and calm him down (the perils of being a freelancer, working from home) or for the teacher to beckon me over at pick-up time to talk about the latest ‘incident’.
The school told me outright that he wouldn’t get an EHCP and that I could apply on my own, but it probably wasn’t worth it. Undeterred, I sought the help of a professional who could help me navigate the difficult system."
Week 7 of Not Fine In School
"As I said before, the SENCO at his current school is doing the best she can. But my son has been struggling in mainstream school since last September, to the point that he has already been temporarily excluded twice, and has only been in for a couple of hours a day since they went back in March. He has regressed against all his EHCP outcomes, and is spending what short time he is in school separated from the other children (too many aggressive meltdowns when with the class) - just him and 1 or 2 teachers in a room, doing their best to keep him happy and calm while he plays. Any attempt to bring in some sort of learning, even well-disguised, triggers his anxiety. So he’s getting no benefit, educational or social, from being there."
Week 8 of Not Fine In School
"I had been warning both the school and the local authority since the beginning of the year, about my daughters school anxiety, the sheer amount of effort, it was taking to get her to school was exhausting for both of us; and seeing her freeze at the school gate and beg not to go in was heart-wrenching for me, but I felt blamed by the school as if it was my fault, because she has a typical female presentation of autism, and an all too familiar story, where she masked in school and let it all out at home with Violent and Challenging Behaviour (VCB) in her safe space- the classic Jekyll and Hyde presentation.
When she was first awarded her EHCP a year ago, I wanted a specialist placement for her then, but her mainstream primary was named. I was told then by the Local Authority that she would have to “fail” at mainstream before they would even consider a special school placement for her."
Week 9 of Not Fine In School
"My son is nearly 10 years old and is a shadow of the boy he used to be. It breaks my heart just thinking about it. He started in a small village school at 4 years old. His older sister also attended and loved it. We started noticing he was having difficulties with other children that same year and was falling out with them on a daily basis. I was called in a few times to speak to his teacher about incidents that had happened but it was just out down to “bad choices” and, because he is so bright, they just shrugged it off and said he would grow out of it.
Week 10 of Not Fine In School
"From the very first full day at school our daughter struggled. She vomited every lunchtime pretty much as soon as the bell went; we were never sure if it was the bell or the thought of the dinner hall that terrified her. Very quickly she was vomiting before school and getting extremely distressed about going, clinging to me in the playground and screaming. It was awful."
Week 11 of Not Fine In School
"The problem here, is that school still followed the reward, consequence method so the inconsistencies weren’t helping him at all. He managed to scrape his way through the reception year without too many major issues, other than the odd school fight. I was the mum who’d get called over to chat to the teacher at the end of the day. I loathed this, as I could see my son squirming next to the teacher as they talked about him making ‘poor choices’. His response upon leaving school was often ‘flight’, he loved the freedom from being outside of the school gates, and I was the crazed mum weaving in and out of other parents chasing him down the road."
Week 12 of Not Fine In School
"After a long fight to see the paediatrician, our son was diagnosed with Autism (PDA profile) at the age of six. School put in strategies based on this diagnosis but it still wasn’t enough. We applied for an EHCP and during that assessment the Educational Psychologist advised a specialist setting, so we began our search for a special education school. However, as our son is a bright boy, specialist schools told us they could not meet his needs as he was not behind academically. So we were stuck between a rock and a hard place - mainstream schools couldn’t meet his needs and special schools were saying they couldn’t meet his needs."
Week 13 of Not Fine In School
"There was two teachers one that was caring and one that was well...not or at least to me didn't seem to care. The promises made were broken, they got funding for me yet I was not seeing any of that. The SEN room days went from 4, to 3, to 2, to 1... then it was all about integration and getting me to adapt. When that didn't work, I was placed in this open corridor space... alone with a book of my choosing, with a monitor person."
Week 14 of Not Fine in School
"Everyone’s writing must be the same
With numbers all touching the line
No matter how much you were struggling
Teachers would say you were fine.
School taught me never to question
Never to just be me
Things are so much better now that I’m home
I’m happy, I’m learning, I’m free."
"Marriage, relationships, partners begin to break as the pressure mounts because of money and careers and job losses.
Isolation feels heavy, but fear of punishment and fines and prosecution are forefront of our minds.
Schools, LA and government making it clear, parents are to blame. Punishment is what we face when support is needed."
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