Willow was a parent keen to do the best for her twins. One of her girls coped with school, eventually, the other struggled, always. This is a journey that too many parent’s of ASD children will recognise.
Why did you first consider home education?
We have two beautiful, intelligent, able-bodied healthy 10 year old twin girls.
We did the conventional thing and sent them first to nursery and then Reception. Two girls struggled with separating from me, the first alarm bells went off as school saw this as a negative and a parenting issue, I thought it was healthy, normal.
The two girls got every bug and cold going so were off school ill. In Nursery this was ok, in Reception, again, somehow our fault. In Reception they were separated because we thought, wrongly, they would do better by themselves as they are so different. One girl stumbled through, let’s call her Beatrice. The other was traumatised, let’s call her Annie. Beatrice made friends, Annie didn’t.
Annie struggled with the structure of the school environment, the rules, her class, writing, cooperating and she struggled with other things, but we didn’t know at the time. Both girls missed me terribly. Beatrice adapted, Annie didn’t.
What was the school journey like?
The school said, “She is fine. She is fine once you leave. Leave her with me, even if she is kicking and screaming, we can cope. Be a big girl, let mummy go. You are too big for cuddles.” School did not see anything wrong.
They refused to put Annie in Beatrice’s class, my parenting at fault, always.
Twins And Multiple Births Association (TAMBA) said otherwise and wrote them a letter. The school ignored it.
In Year 1 her teacher was inexperienced and gentle, but Annie felt isolated and unsupported. She got moved around from class group to group, she struggled with writing and spelling, but her reading was excellent. Annie had to be coerced into school. We asked for a dyslexia test, it never happened.
Annie begged us to not go to school. It was heart breaking, I wanted her out. I had no support. I wasn’t on social media. No one took what was happening seriously. With school only interested in attendance, I felt completely alone, I felt bullied.
They got in a CAMHS counsellor who definitely thought we were the problem. We took Annie directly into the classroom- no waiting outside with the other kids. She complied and once in was resigned to being imprisoned. The counsellor took Annie out of the classroom, played with her, but would not tell me what they were doing in the sessions, they were confidential, and the counsellor didn’t see anything wrong.
Near the end of that torturous year another parent, shocked at her son’s behaviour, raised bullying as an issue and gave us evidence. The school did nothing. So with a child clinging, having nightmares, refusing to go in, we took her out on medical grounds (had to pay for the doctor’s letter).
I contacted Red Balloon, the charity helped me understand how schools deal (or don’t really) with bullying. We withdrew Annie three weeks before the end of term, so then the school took notice, “We only want a happy Annie.” They agreed to allow her to start school in September at her own pace, little bits of time till she could cope with more. I knew school was over but had no one on my side.
The start of Year 2, I knew this was a disaster. I knew the teacher, Ice Maiden, with a mask of caring. Before we got to half term in stepped the Head of Education Welfare. ATTENDANCE! Annie had to go in full time. “She will break down,” I countered. I wasn’t a doctor or professional, I knew nothing.
A few days later Annie said she was going in full time. She did. Years later she told me school said she had to or ‘we’, her and her parents, would get into trouble. Not one of her classmates greeted her, not once. Sometimes two of us had to take her in. She went to the reading corner. Once we left she was forced to conform toward whatever the class was doing.
Annie had nightmares, she clung, she pleaded, she tried to run out of the classroom. She stopped eating. CAHMS saw nothing wrong, nobody did.
We paid for an Educational Psychologist, who tested Annie and confirmed she was very bright in some areas and found she struggled in a few, but they raised nothing.
Finally, at Christmas my husband agreed this wasn’t working. We deregistered her.
The CAMHS counsellor wanted an exit meeting, I refused. She sent a letter telling me we needed a parenting course to help us with our boundaries, and we were making a big mistake that would affect Annie’s mental health for years to come.
I am sorry school seems so dominant, but I think it is good to know we tried, we listened to them and it was such a mistake.
So how did your home education journey begin?
We had a visit from the LA, it went well enough. The LA noted Annie didn’t make eye contact and maybe should be checked out for autism. We put her on a waiting list.
How did you set things up at the start of home education?
We were going to try schooling at home. A room with a desk and a computer and workbooks. Ha! We were on survival mode.
How did your child react to this new situation?
Annie’s eating went down so the GP referred her to CAMHS. Nothing happened for so long. I tried all the help lines, but no one saw the link between Autism and not eating and it was all doom and gloom and hospitals.
It got so bad I rang CAMHS. We saw their top psychiatrist, she noted Annie’s lack of eye contact. They tried all the conventional ways to get Annie to eat. They got in a dietitian. No one had a clue. So, I kept doing what had worked, offering snacks, getting her the food she craved, feeding her when she wanted, taking her everywhere on a scooter (she didn’t have the energy to walk). Annie did not make the initial criteria for ADOS (a way to diagnose autism, more orientated for boys).
We saw the psychiatrist fortnightly for almost a year. She couldn’t make Annie eat, so as a last resort she listened to me. The psychiatrist pushed for an assessment because they couldn’t see any other explanation (this was not anorexia) and low and behold, 2 1/2 years after going on a list, Annie was diagnosed.
We didn’t need to be told. We just wanted the recognition that our kid responded to the world differently.
The Psychiatrist wanted to push for an EHCP, she wanted Annie to go to secondary school. We investigated the only two units in our borough. Beatrice wants to go to secondary school, so Annie wanted the option, and my Man still thought school may be possible. This child cannot do half an hour formal maths at home!
Did you change the way you did things?
I found an adult to show us photography, bake, play music, but it was very clear Annie could not tolerate any kind of formal lesson plan. We had to unschool. We had to let Annie direct most of her learning.
We did not know about PDA (pathological demand avoidance). In fact, we were right on the cusp of a growing awareness of girls and autism.
Our bright autodidactic girl refused anything that connected to school.
No outings that were structured like school, no workbooks, no lessons, definitely no ‘formal maths’. No anybody else’s structure.
We discovered Operation Ouch, Ted Ed, animation, cartoons. Too many to name. We discovered a child who loved history, how the body/mind works, nature programmes and music. Origami, art, making things, inventing things (always to make the world a better place).
Annie was not a sitting down school child. She was a child who didn’t particularly like museums, found home education groups hard to navigate and hated any with a structure. I would say she has dysgraphia, with a dyslexic brain.
She has a PDA profile and her Spectrum cluster means she can appear neurotypically normal, until certain situations are introduced.
We so do not do ‘The School Curriculum’. I follow her lead, while adding bits and pieces that may be of use. She has time to find herself (still processing school trauma) and most importantly is learning to self-regulate. Although we don’t follow the National Curriculum, and we unschool, we sent in a successful Education Report that was accepted by a not very accepting LA.
Annie has an ability to think outside the box and to have a sense of what she wants without being told. Currently she is into making cartoons (has already learnt to make books) and inventing things that will make our world happier. She is studying many books on dogs and dog breeds as she desperately wants one. She articulates what she wants (her sister tends to hold it all in).
What kind of moments let you know you made the right decision?
I’ve been trying to teach Annie the time, for ages. The other day in five minutes, she explained hours, minutes, seconds, days, 24, 48 and 72 hours.
It was wonderful. Classic magic.
My daughter is coping so well because of how we are responding to her needs. Normal school, for its agenda and size, cannot support self regulation like home education can. Because we lifted the pressure off our daughter, her PDA appears mild. That is so true for us and again, although not true for everyone, important.
What have the difficulties of home education been?
I wish we had started the home education journey at the first sign school didn’t work, and yes, for both of them. Although it is easier with one. We are still held by school timetable, as Beatrice wants to go to school!
I have less time to earn money, to do what I want to. We are financially poorer, but emotionally richer.
I am learning to trust my children and myself more.
I am facing prejudices I never knew existed. Anti-home education, anti-unschooling approach, prejudice against hidden disability, people cutting us off when they find Annie doesn’t follow certain rules.
I still struggle with institutions, I still struggle with being bullied, but I have found some lovely Facebook sites.
I never knew how hard it is to parent, to face my own prejudices, control, attitude. Having a child who does not conform allows us to see alternatives.
I can only see that as a good thing although it doesn’t make life conventionally easy. To be able to question seems to me, to be one of the fundamental human rights (if done from a place where you are respecting other people’s rights).
We haven’t had much joy with local home education groups. Social groups are hard for Annie. She is very social but needs to find 1-1, and then they get very intense and so far, very few adults have been able to adapt to what she needs.
Which gem of advice do you wish you had received at the start of all this?
Researching home education online.
Ted Ed was brilliant.
There are many Facebook sites, it’s just a case of finding the ones you like.
A few books:
Not Far From The Tree- Andrew Solomon.
Neurotribes – Steve Silberman.
Martian in the Playground – Clare Sainsbury.
Odd Girl Out – Laura James.
John Holt – How Children Fail.
Ross Mountney – A Home Education Notebook.
How does Annie show her ‘outside the box’ thinking?
She was 9 at the time of all these makings.
She loves dens (and treehouses- no chance). Making dens and playing with cardboard boxes is big.
Give us a square box or two and Annie doesn’t necessarily think in squares! She loves problem solving.
If she doesn’t fit in the construction, she makes the construction for a toy of hers. And if she really likes it and it’s not made at home- I have to take it home by bus!
What is the significance of this painting?
This is a painting of a real person from two perspectives (I ‘teach’ portraiture). In this portrait painting, the woman really wore those colours. Everyone was amazed at Annie capturing her so well and being able to show the woman from two different perspectives.
What’s going on here?
Ok. This was at The Guardian Big Draw, Kings Place. The project was to draw a bird (I think) on a post it note – supplied. Everyone conformed. Annie did the luminescent bird, far right, using a whole number of notes to make one big bird. The artist at Big Draw was bowled over by Annie’s ability to think differently.
A very thorough article on ASD and the challenges faced by parents getting a diagnosis for girls can be found here at America’s most respected Autism Parenting Magazine. Although the clinical criteria are for the American medical system the challenges faced on this side of The Pond are very similar, and the consequences of masking, camouflaging and late diagnosis are experienced wherever you are in the world.
With gratitude to ‘Willow’ for sharing her story.
If you have a SEN child we hope you do not feel alone in your home education journey. Connect with others. Check out our Community page to see if there are groups local to you.