with Eliza Fricker, SEND parent and illustrator
Twitter, eh? Sometimes it makes you grind your teeth, or it can offer a spark of wisdom. Or in the case of today's post, a real gem of creativity. I recently spotted a tweet of an illustrated comic from Eliza Fricker, the mum of an autistic daughter who struggles with pathological demand avoidance and anxiety. If you've experienced this as a parent, as I have, you will understand how frustrating, upsetting and desperate it can be to see your child suffering so much with what should be simple everyday tasks. You wonder what you did wrong, how you can 'fix' it, what's going through their minds and, perhaps most of all, how they will ever manage to become independent. (As an aside, I can tell you it does get better, though it's in fits and starts, forwards and backwards, and takes a long time)
Eliza, an illustrator and designer, is handling it in the way that comes naturally - through creativity and comic strips. She's here on SNJ to tell us more and show off some examples of her work.
Artistry, avoidance and anxiety by Eliza Fricker
I only attended a few coffee mornings in the early days. We would sit in a semi-circle, balancing hot beverages, biscuits and pamphlets while kind, softly spoken people from the local authority hosted a discussion around a common concern such as puberty, Christmas holidays, or going on holiday. I would see the other parents angry, sad or flabbergasted. My defences would kick in. “I won’t be like that,” I told myself.
My daughter is autistic. After a number of years struggling at school, she had received her diagnosis and now she would get the support she needed. So I swerved the coffee mornings and the parenting courses. But years went by and things didn’t get easier for my daughter. She struggled to go to school every day, she was withdrawn or would remove herself from class. She had meltdowns at home and baffled her school by refusing to engage with any support they put in place.
We pleaded with her school for her old teaching assistant to be reinstated, but she had already been put with another child. We asked the SENCO over and over if she needed an Education, Health and Care Plan (EHCP), but she said no. Her attendance dropped, her lateness increased and her behaviour at home deteriorated.
With secondary school on the horizon, we knew we needed that EHCP and eventually school agreed. We worked with an excellent educational psychologist who 'got' her and us. “You have a very complex little person there,” he said, and he was right. He wrote about pathological demand avoidance and the more we researched it, the more it all made sense for us. The extremely high levels of anxiety, the excellent masking skills, her intelligence, sense of humour and refusal to engage with many or most activities. How on earth was she going to manage secondary school?
We met the new school, but they didn’t want another child with an EHCP, especially one as complex as ours. We tried a special school but the trial week lasted 15 minutes. What was the future for our funny, creative, sociable daughter? Was it my fault she was so complex?
I was an illustrator. Now I'm a carer.
Until last year, I worked as a designer and illustrator and my husband and I designed furniture and homewares. Last September, we took part in our annual design trade show, but it was different from previous shows because we had our daughter with us. She had only managed one day of secondary school and couldn’t go back.
I assumed this would be a big deal for all involved if a child can’t go to school, but I’ve since found there are loads of us. So now my daughter is at home full-time and I am a carer. I still do some bits of design work but my life has become this. I am a carer. I had ideas and plans, but the last few years became something I never imagined. Our lives became consumed by meetings in sterile offices, emails, phone calls, voicemails, lanyards, visitor stickers, laminated sheets and worst of all, crying, anger, frustration, despair, desperation and anxiety.
To set the record straight, we absolutely don’t start off this way. We become these people after years of our children being misunderstood. I’m sorry for judging those other parents in those coffee mornings; I didn’t want to become angry and sad, but now I know. We are stuck in a broken system of maddening and spectral support that does not work for our children or our families. For so many, it breaks us. It broke my daughter and it nearly broke me.
Things are better now for my daughter and us; she has an amazing specialist tuition service who come each week. It's bespoke, relationship-led and child-led learning. The local authority is paying for this (Education Other Than At School or EOTAS) but it was not without a fight, with the constant worry they will remove it. I am still angry but I know so many other parents in the same situation who do not get this support and whose children are at home without any provision. This is not fair and this is not right.
A brighter future for my daughter and a different one for me
I can see a future now for all of us and I was never able to before. My daughter is happy, calm, has very few meltdowns and much less controlling behaviour.
So now I am home all day I spend any time I can writing and drawing. I write and illustrate a blog about navigating the education system. I write about my guilt, anger, frustration and all the maddening systems. I draw this humorously because this helps me, offering relief when I can draw the perfect receptionist, with her perfect hair, at one of my daughter's schools giving me advice when we turn up an hour late in the morning. Or the phone call you wait weeks for, that unexpectedly comes while you are cleaning up cat sick. You don’t have your notes, but you don’t want to hang up because they're the first person to speak to you about your child's difficulties in weeks.
These are the small things; childish you may think, but years of these comments, looks, judgments, unwanted advice take their toll. Much of what you are on the receiving end of isn't meant to offend. It might even be well-meaning, but perhaps ignorant too. I really don’t dislike all the teachers we encountered, most were really kind and wanted to do the right thing. Even those often faceless civil servants in the local authority had some good eggs working there, but there is still a huge lack of understanding and far too many systems to navigate.
Enough with the comic sans!
And this is another reason for writing and drawing. We didn’t want more laminated, comic sans, stupid, condescending, smiley faces for my daughter. We wanted an individualised approach with consistent relationships for her and this will only come from true understanding.
Since starting my blog I have been overwhelmed by the response from parents and educators. This has been a huge comfort to me after years of feeling isolated from the other parent’s experiences at the school gate. I have also been surprised and pleased to hear from professionals who have asked me what they can do for children like our daughter.
This is why I continue. Because there is no 'fix'. No amount of laminated sheets can do this, because our children don’t need to be 'fixed'. They need a real and true understanding of neurodiversity and once we have this, then we stop trying to change these children. If everyone who is working with our children can imagine how things are for them, to really see things from our children’s perspective and ours, they will hopefully have the empathetic response needed. There will be fewer frustrated emails, less anxiety, less fixing, less masking and less laminating.
Because our children are exactly who they are meant to be with, or without, eye contact, and all those weird things neurotypicals are obsessed with. Change the environment, not the child. Oh, and let me know when you are going to call so I at least have a pen and paper to hand.
www.missingthemark.blog | Twitter: @_MissingTheMark | Facebook Page: @MissingTheMark1
See some of Eliza's work
All artwork is exclusive copyright of Eliza Fricker, reproduced on SNJ with her kind permission. Please credit Eliza as above when sharing on social media.
Click an image to enlarge.
Also read:
- Creating a PDA coping system, after CAMHS’ strategies failed my son
- SEND Law right now. And why you mustn’t confuse EOTAS with home education
- Why did my PDA son have to fail in five schools before I was listened to?
- More than one in three disabled pupils experience bullying in mainstream school, plus other concerning SEND stats
- The frustration and heartbreak of Pathological Demand Avoidance
- Learning to cope with your child’s Pathological Demand Avoidance
- 70% of children with Pathological Demand Avoidance missing out on education
- Pathological Demand Avoidance – one family’s story
- How is the coronavirus lockdown affecting the mental health of children with SEND?
- Autism and Anxiety: What helps?
- School can demoralise autistic students, help me celebrate our neurodivsersity!
- Improving autism training in schools: A good practice example.
- A Parenting Course? How dare you!
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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