As I glance at pictures of my beautiful daughter in her younger years I fantasise about what could have been… What should have been. We had a glorious relationship; “you and me against the world” we would say.
I was a proud single mum. My daughter’s father had never been on the scene, and that was OK. I felt our lives were more straight forward as a result, in fact. I worked hard, I was so keen to be everything she needed. We were a team.
As she grew the intensity I felt as a younger single mum didn’t go away, whilst I always had enormous energy for getting it right as a parent I didn’t feel the same changes that other parents reported… “It’s much easier now isn’t it? Now that they sleep better, don’t need constant reminders to go to the loo and are easier to reason with!” other parents would boast. I would nod and smile but deep down I felt like a failure.
You see, I wasn’t seeing those changes in my experience of parenthood. Toileting was constantly a battle, bedtimes were so tricky, I couldn’t reason with her no matter how hard I tried. She was intelligent but struggled with applying her learning to life; for instance, she couldn’t tell the time but was achieving the highest levels of attainment in maths. But to everyone else we looked a picture of perfection, a single mum absolutely nailing life and with a beautiful, intelligent, well-behaved daughter to boot.
What went on behind closed doors is something else.
An Intense Difference in Presentation
There was an intensity to our relationship that I felt with no one else. I refer to this intensity a lot, as it is an overwhelming feeling that I experienced every single day.
I love her with all of my heart but I felt like a failure every single day. She seemed so unhappy. For years she cried about school life, despite her glowing school reports that detailed her being far above national average for attainment and a super happy pupil. I tried to understand why she would lie about her school experience when her teachers said she was so happy and content during the day.
Her different presentation between home and school was becoming more and more pronounced. At the end of each school day she would explode with emotions… Her crying turned to physical violence, towards herself and me. Teachers just couldn’t understand it.
She was dragged into school from the car by teachers. I was a young mum and scared of the repercussions of her not attending, so I cried as I stood by and allowed it. The guilt I feel now for that is absolutely unreal, and no amount of therapy seems to ease it.
Her mental health was in the gutter. She was bullied. She frequently misunderstood the communication with ‘friends’. She didn’t feel like she had any friends. She felt different. She developed Glandular Fever as a result of the stress from school and from my not being able to understand her or relate to her.
Her eating was a challenge, as she had very limited by way of ‘safe foods’. She had no ‘likes’ in life, and couldn’t tell me what she enjoyed. But she seemed to ‘hate’ a lot of things. Getting dressed was an issue, hygiene was an issue, homework was an issue, going out was an issue, my leaving the house was an issue… The list was endless. (What wasn’t an issue was eating KFC and watching YouTube 24/7!)
The Blame Game
Family relationships fractured, my single parenthood was constantly blamed and I was called a ‘terrible mother’ by those I thought loved me unconditionally.
We were alienated. And I had no idea of a way out. I felt suicidal, and my daughter’s suicidal ideation was not far behind mine.
CAMHS rejected our referral (through the school and the GP) 5 times. We were accepted on the 6th attempt. A CAMHS nurse said she believed my daughter was Autistic.
“Autistic? But she can make eye contact?” I thought. How wrong I was! (I’ve since gone on to study Autism at length and I’m mid-way through my MA in Autism)
The Light Bulb Moment
I immersed myself in learning. OH. MY. GOODNESS. She IS autistic! But there’s more to her than that…
One day soon after this realisation, a good friend told me to watch a TV programme “Born Naughty” on Channel 4. A lightbulb moment for me. I started to look into ADHD and Autism, then PDA (Pathological Demand Avoidance).
I finally found the reasons she was struggling. But I knew so little.
I fumbled my way around a new style of parenting, using all these unusual techniques and strategies (many that went against the grain of what I had learned through ‘traditional’ parenting). I was making mistakes left, right and centre. The guilt was so strong; was I doing the right thing?
Eventually I was put in touch with an Autistic Advocate who helped give me a sense of direction. What ensued was a traumatising legal battle for equity for my child, and a long learning journey for me. I got it wrong, A LOT.
I was blamed for researching too much by social care. They insinuated that I had ‘Fabricated or Induced Illness’. That my daughter would be perfectly fine and thriving if it wasn’t for my ‘constant need for a label’.
After many years of our legal wrangle, we won our legal battle. The expert professionals reports said it all and undermined the ill-informed teachers and social workers who had no knowledge in this area. Justice prevailed. It was all worth it, right?
What came out of it all? A brilliant education, health and care plan and a place at a flagship provision for children and young people with PDA. The ultimate SEND parenting dream, right? I gained justice, right?
Justice or Life-Long Injustice?
The decade it took me to see through the nonsense that was fed to me by the school, the council, CAMHS and the NHS meant that my relationship with my daughter was heavily fractured. As soon as she was of age, she broke all ties with me. She hated the experience we went through on our journey of discovery, hated the legal fights, hated the constant assessments as we tried to work out what was going on, she hated the CAMHS visits. She hated all of it, and what was the one consistent thing through all of it? Me. So she had associated me with all that trauma and now wanted no connection to me at all, who could blame her?
Further validating her concerns with me were family members, who had been eagerly waiting in the wings for it to all fall apart since their ‘you’re a terrible mother’ judgments in the early days.
The whole experience destroyed her. It destroyed me. It destroyed us.
If I had my time again, would I do anything differently? YES. I’d have been more open to what Autism is. I’d have stopped jumping through the hoops set out to me by school, the local authority, social care and CAMHS. I’d have enrolled on a course on PDA the moment I found out about it, I’d have found a tribe that understood me, I’d have gotten myself in debt if need be to get an earlier diagnosis and provision. I’d have lessened the trauma on her, on me and on us.
We both have a lot of healing to do. I’d love nothing more than to do that together, for now though and until she’s ready, our healing will be independent of one another. And that breaks my heart more than anything else could.
- Anonymous Author for Sunshine Support 2023
A Day of PDA – a fully comprehensive all-day workshop with top PDA experts
A live workshop delivered by Speech and Language Therapist, Libby Hill
We are dedicating this week to exploring the issues surrounding school avoidance and attendance difficulties.