Moving from asking me, to asking my child – a bit of a journey
The suggestion that it wouldn’t always be me talking about my child to professionals was raised a few years ago, during a conversation with Health. “We couldn’t be discussing this with you if he was 16,” they said. At the time I was confused, disgruntled – he wasn’t yet 16, why make the point? I just wanted to find out the next steps to appeal a referral they’d turned down.
When I say Health, I don’t know exactly who in the NHS I mean. Often, I don’t have the energy to remember everyone’s title or role in the history of our lives. So many people were in the house at times, I ran out of coffee cups.
It played on my mind though –soon, everyone involved in his life would turn to my child whenever they needed a response. In theory, I understood the idea of assuming someone had capacity to make a decision. In reality, everything lately had been so difficult, so impossible to navigate, that it seemed it would never be safe to hand over those conversations and big decisions to him.
As hard as it was to consider, I wasn’t facing the challenges of some families – longer term, I still expected him to be independent and free of specialist services. I just hadn’t considered that he would be making decisions that would affect this possibility so soon.
How did this come about?
Let’s go back a few years, pre-pandemic, to when my child was in their early teens. A quirky, quiet child, who had always been in a mainstream setting, and whose only ongoing health needs were dental checks and vaccinations. A few childhood illnesses, and we had now hit secondary school fairly painlessly.
With little warning, that time of being a teen turned dark, and he developed thoughts that took us to A&E and to private counselling. I had to stop letting go and start holding on – no more bus to school, or hanging out with friends - all replaced with lifts and supervision everywhere, dropping out of education, and cajoling to mental health appointments.
Within a year, he was in a hospital away from our hometown. Even though I’d worked with families before, nothing could have prepared me for the shock of the inpatient mental health system. My child, deemed too unwell to stay at home, was expected to manage his own tribunal to ask to be discharged – to speak with advocates, with a solicitor, to appear before a panel. We were told very little – he chose not to include us as we had originally agreed to his placement. He lost.
All the important decisions were made somewhere else and relayed to us – medication increases, refusal of leave, a possible move. The smaller choices became so important – what food to take, what game to play, what plans to make for the time when he could come back to us. Everything I did in those long days was about him. I ran up a credit card bill on petrol and treats for him – while I survived on sandwiches and anti-depressants most days.
We were ‘lucky’ – I always feel the need to acknowledge this. His stay was a couple of months, not heading towards years. He was discharged as the treatment in hospital had no positive impact on him – the whole environment was too stressful. During his detention, he had been diagnosed with ASC, which was a bit of a light bulb moment.
Back to the phone call
I won’t waste paragraphs on all the subsequent back and forth that took us to the call with Health – for several months after his discharge I read and re-read the Mental Health Act Code of Practice that I’d added to my credit card. I phoned helplines, CQC (Care Quality Commission: https://www.cqc.org.uk ), saw my MP, liaised with CAMHS, wrote complaints, attended various acronym entitled meetings – anything to get my son the right treatment and to try to salvage something from the wreckage of his illness. I didn’t work outside the home anymore; it was almost a full-time occupation.
And your point is...?
All of this is to tell you that I was his advocate and his voice - I wanted people to know what he thought but couldn’t just tell them – he didn’t speak this new language I’d had to learn; he was scared of being admitted to hospital again; he was still in the midst of illness with the addition of trauma due to his experiences of detention.
I researched and applied for an EHCP (Education, Health and Care Plan); Blue Badge; SEND Transport; DLA*; anything to help him. I had the advantage of some professional experience of education, but I still had to download guidance and regulations.
Through all this, I would explain to him – do you want something that says what you need at school? Do you think someone else taking you would be good? If we could park near to the shop, could we go together? I worked out ways to get his input. We tried writing questions and him answering them on a laptop. We tried videoing him talking. We tried me typing and him talking.
The idea that he would one soon move from these simple ideas to managing the process was inconceivable really. I knew, on an abstract level, that this was ‘A Thing’, but if I was struggling with it being almost a full-time job, with my education, my work experience and knowledge; how would it be a fair fight for him? (Unfortunately, I’d found that often ‘fight’ felt like an appropriate term).
Theoretically, this shift in decision making is built into processes, but from paper to practice doesn’t always happen.
*Links to these - I used to hate reading something and then having to Google it:
What ACTUALLY is the problem?
The challenge was that as time passed, the legal frameworks around decision making kicked in, while we were still managing treatment, recovery, daily life, family therapy, refreshing our relationships – in these months and years he moved through all these competencies and consents and rights.
Some of the pieces of the framework around consent and decision making – I’m not pretending to have any expertise here.
- Gillick
- Mental Capacity Act at 16
- Decisions around EHCPs – from the end of compulsory school age (p.34 onwards)
The organic process of your non-disabled child moving to adulthood is hard enough at times – but when you’ve led your child through the complicated landscape of health needs and special educational needs (we didn’t have social care support), it’s incredibly scary to think of effectively handing them the non-existent map before you’ve arrived and follow them instead. If they let you that is – confidentiality means you may not be given much, if any, information.
Perhaps not strangely, the most collaborative people in this shift were those who knew us through his illness, who had some understanding of our dynamic, our relationship, and whether my son wanted me to be involved. It was often at one-off, incidental appointments that my son was straight up asked for decisions, or to agree to things, and he would frequently say afterwards:
- What happens next?
- I didn’t understand that bit.
- Why didn’t you say that then if it was so important?
- So, am I having a test or not?
My biggest fear was that people would accept answers that led to withdrawal of support (good for capacity and budgets, thought cynical me) without fully explaining what they needed to know in a way he understood and outlining the consequences. We wanted the same things, he and I, for the best reasons – independence and support to get there. I always wanted my kids to grow up and leave home – this one had met some hurdles along the way, and if it took him longer, so be it.
We are also in different spaces, my son and I. He, with the optimism of youth, is looking forward. I am looking back over my shoulder, fearful of what might catch us or might be lurking to trip him up again. Scared that if we remove all the scaffolding, he will fall too far, too hard.
I found myself trying to model how uncontrolling I was – I would copy him into emails he refused to read; I would always tell people that I had asked him; I would ensure I visibly checked in with him if I spoke at meetings, even when he’d already told me what he wanted.
As the focus switched from me to him, I found some approaches worked better than others. My test for this was how much my son worried or was confused afterwards. on the way home, the next day, and even the next week.
Some people seemed to understand how important it is to understand the context and the communication requirements of the person in front of you. At one appointment, the team took turns delighting in his artwork, initially shown with reluctance on his phone. A clever but casual conversation had built a rapport and allowed a little diversion to his interests. Once he realised that they saw him as a person, not a problem, he was able to ask some questions about his care; able to relax and drop his guard.
I listened as a practitioner agreed to meet in a coffee shop, one which had no associations with any of his past experiences, and which he would never have to visit again. Instead of insisting on a clinic-based appointment, they met my son on his terms. My trust in them increased when my son corrected them about the impact of his experience, and instead of defensiveness, kindness and rephrasing was used.
Often, I was allowed a few minutes before or after my son spoke – having my fears or hopes voiced was reassuring, and I felt provided context to his often-limited input.
Conversely, I was always surprised at the confidence with which unknown professionals would decide to ask my son something significant on a first meeting. Their expectation that he would reveal all to a stranger, when his first experience of doing this had landed him miles from home in a mental health unit, was almost arrogant.
And where did we get to?
Heading to his 18th birthday in the next few months, I’ve often been included in the decision-making space, if not always treated as a participant. I’ve picked battles and corrected my son when he’s assumed I know something it’s too late to change. Education has been the clearest shift – there are so many people in a school, and daily decisions around courses, that he’s made (or not) choices I probably wouldn’t have advised. I planned the move to PIP*, learning from the experiences of friends who have seen their child suddenly have access to a sum of money every month. My son and I agreed I would be his appointee, and I spent some time introducing the idea of what needs to be paid for, and how we would budget together for this.
The tokenistic stuff has worried me the most:
Practitioner - ‘Can you just send an email to say we can talk to you please?’
Me - ‘Sure, do you want me to copy him or [insert professional] in? To show that’s ok?’
Practitioner - ‘No, if you just email that’s fine.’
So, to round up: my experience is not your experience. The things that worked for us may not work for you. But here are some of them anyway.
Tips for professionals:
- Think about the wider picture – What are you asking and what might it trigger? My child will probably say they are fine because when they were honest, a scary thing happened to them.
- Check they’ve understood – It’s so obvious but nodding along and saying yes might mean you’ll stop asking and he can leave. It doesn’t mean he’s listened and take in your words.
- Are you being patronising? - My son can smell this a mile off. He doesn’t want to talk about his friends at school / what he is studying / how tall he is – avoid Great Aunt Gertrude territory.
- Think about why I might be scared about all this decision-making passing to their child – When you know how hard it is to get support, and your child can choose to stop it – who picks up the pieces?
- Whatever decision is made, for our young people who are expected to have ‘mainstream’ lives, parents will often be practically and financially supporting this. Help us help our children.
About the author
Mhairi Tynan is the parent of four teenagers/young adults and joined the SLaM Autism Strategy Service Users and Carers Group in 2022. Her family used the SLaM OCD service for young people. She lives and works in the South East, and uses her own experience as an autistic adult and as a carer to support improvements to services in her local area.
