A guest blog by Helen and Jack’s Mum
‘I suspect the problem is her Mum who is really overanxious’. ‘I only spoke to Mum once but she seemed very over stressed’.
I knew what was being said about me in that meeting because my friend was sat there, not as my friend but in her role as a teacher from another school. She told them she knew me socially and she had already asked me if it was OK to stay in the room while ‘We’ were being discussed by the meeting. I had said it was OK for her to be there – she knew it all anyway and looking back now with hindsight, I’m so glad I had one person sat there believing what I said was true. I also had one person who was brave enough to tell me what was truly said at the meeting. At least I knew what they really thought.
The funny thing is, at the point when those words were spoken about me (in a meeting when I wasn’t present), I wasn’t an overanxious person. I was a worried and concerned person and this was the appropriate response given the distress I was witnessing in my daughter each morning as I struggled to persuade her to get up and leave the safety of her bed. The daily battle, trying to get her dressed for school, eventually her body giving in and letting me dress her, as her spirit was slowly breaking down. And each day, as she walked into school she blended in, like a switch clicked in her head and so my request for help meant ‘I was must be the problem’ as Helen was just ‘fine’. See here for more on ‘fine’.
It wasn’t until much later, years later, that I was so traumatised by each day and each battle, that I developed an anxiety disorder. To be honest, I strongly suspect I have post-traumatic stress disorder now. Every missed call from school, every email from a professional, every letter from the Local Authority…sets it off. I start shaking and have to sit and breathe, allowing the waves of panic to pass by, until my brain can start to function again. I have read research that suggests the level of stress autism parents can live with is similar to that of war veterans suffering from PTSD. I can really believe that is true.
The day I broke was the day my beautiful girl asked me to smother her in her sleep.
It was bedtime and she looked at me with eyes full of pain. ‘If you do it when I’m asleep then I won’t feel it and I won’t have to go to school anymore’. I’m screaming inside, where did it go so badly wrong? I didn’t bring you into the world to do this to you. Looking back now, I want to say that was the lowest point, but it wasn’t.
What I didn’t know then was I would be faced with my lovely daughter on suicide watch (medicines locked in suitcases and knives in the safe) and that the anxiety would stop her eating and at that point I had to do anything to just get calories into her to keep her living in the world.
It had been bad in primary school, but as she moved to secondary school our entire world collapsed. By the October, she wasn’t ‘fine’ in school anymore. The school refusal only home could see, became the school refusal that everyone could see as we stood in the car park trying to talk her out of the car, sat in my house witnessing her crying like a wounded animal in her bed, heard her in the background as I rang school each day.
By the January, I’m sat in a Camhs appointment with her, being told my 11 year old needs antidepressants, listening in horror as Helen struggles to tell them she wants me to smother her so she didn’t have to go to school.
At the end of that appointment, the Psychiatrist watched me with Helen. Helen was trying to get me to take her home and not go back to school. I didn’t know she was watching me that day as she packed her bag of notes up. In her later letter, she commented that she had watched me and it was her view that I had only got Helen to school so far because of the approach I had taken, but that in her view I couldn’t do this much longer and her school placement would eventually fail.
Even now, I realise those words meant so much because just one professional had looked and not found me to be at fault, I wasn’t just the over anxious or a failing parent. I was trying everything I could and on that one occasion I was met with compassion and understanding and not judgement. It is one of the very few moments when that happened.
I wasn’t broken when our story started but watching my beautiful girl break, and being judged by many professionals, battling for even the basic support for her, let alone the eventual specialist package of support, broke me too.
I didn’t need more judgement.
I judge myself at every turn…could I have done it differently…should I have stopped earlier…asked for help in a better way…made someone understand….tried harder…not looked so anxious…not allowed myself to break.
So I’m writing this as a plea to professionals. If Mum is anxious it doesn’t mean Mum is the problem….it means there is a problem and it is through listening, and understanding that you will support the child, Mum and their whole family. Please don’t stand back and judge us while we break.
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