Thank you @Daisydreamer for creating this space.
My 17 yo son lives with schizophrenia and OCD. He has heard voices and seen things that freak him out since he was 8yo that we know of, but I suspect longer than that. Who thinks to diagnose psychosis in a child? Unfortunately, I don't think psychology or psychiatry have caught up with the reailty of some people's experience. I look back on my sensitive, gentle, curious, funny little boy who was so anxious, had major separation anxiety, panicked at any sudden loud noise, and I wonder what was happening for him then.
He also experiences feelings of being controlled (really difficult to manage in an era in which we ARE being told what to do/subjected to 'stay at home' orders during a pandemic, and constant daily changing 'rules'), has felt like he's in a science experiment, paranoia, suspicion, and for a time believed that my husband and I were impostors. He also thinks cars behave suspicously and are watching/monitoring him.
Treatment so far has involved medication, still trying to find the right balance. He's been supported by the local CAMHS social worker who hadn't worked with any young people with psychosis before I think, because she's had to learn as she goes. There's been 3 different psychiatrists so far but the current one is sticking around I think and our son seems to feel ok with him. It's hard to tell, he doesn't show much emotion, and he doesn't like to talk much to me.
Getting a diagnosis for him in August 2020 was a relief in some ways, but has left me with so many questions and fears for him and for us. I have worked in disability services for 25 years with people with intellectual disability. I have a really strong understanding of person first, strengths based support and the rights of people with disability. We have high expectations for our boy to have a good life, and we are supporting him with that. He lost his apprenticeship in August in the last lockdown, and only yesterday started a new job as a trainee water and sewer operator at Council. I supported him through the application and recruitment process, but he did the work and got the job. We're very pleased and relieved for him. He's much happier when he's working.
At some stage, I'd like to step back and just be mum again, not case manager/coordinator/support person. We live in a country area so supports are limited, but I'm trying to navigate through the local 'system' to locate supports. This is what I do profesionaly for others with intellectual disability, and I can tell you it's been difficult navigating the mental health sector. It's so disorganised, difficult to navigate, and since the NDIS the assumption is that all who should have the NDIS actually do have it (if only it were that easy). There are lots of gaps left behind, and policy changes such as not allowing people to voluntarily sign up for a Disability Employment Service if they can't get Centrelink has left a gap that isn't being addressed. I suspect I will become one of those loud and annoying carers who advocates to politicians any time soon, because the services we have aren't good enough, they assume that everyone with psycho social support needs just needs a couple of CBT appointments with a para professional to get them through a 'tough time'. Well, I don't think my son's illness will be going away any time soon, and I suspect that the long term support he will need on and off throughout his life will primarily be provided by family, me in particular.
I'm interested to hear from other carers and people with lived experience, what supports have helped you in early adulthood to learn to manage your health/wellbeing/appointments with psychiatrists etc, and to also learn to be independent and to thrive? Have you needed support to navigate romantic relationships/other relationships? If so, what helped?
Thank you for reading.
Tinker
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