Today was exceptionally painful for me. I wondered whether to even write about it but then I thought, well, it’s real life. Maybe someone will relate directly or even indirectly on some level because fundamentally we are all struggling with similar things – life’s choices, painful emotions, finding peace and acceptance in the muddiest and some of the least talked about issues to grapple with.

My adult son has severe autism and learning difficulties and has recently moved into an assisted living unit where he has support from carers 24/7. I visited him today and it did not go well. He hasn’t lived with me for a few years due to my own declining health and lack of ability to manage him but I have always visited even when it has been hard. He had lived with his father and stepmother but due to various issues they felt he was better placed in a structured environment where he could be given the support he needs. And indeed, he seems to be happy and thriving so far.

My pain is, and has always been, personal. When I got there my son smiled and seemed happy to see me, but soon became very stressed, and I was faced with the familiar challenge of feeling unable to connect with him. I forgot to bring his ipod for him to watch Thomas Tank videos on, and while I said he could use my phone, he was upset by this. He spent most of my visit biting his hands in anger, picking hairs off his clothes, not knowing where he wanted to be. I suggested we sit in the summerhouse, and he organised the trains that I’d brought for him, but he was soon bored by this and wanted to go back inside. I tried to talk to him, show him photos and videos, tell him things, connect with him – he just wasn’t interested. This scenario is far from new but today felt much more raw and painful as it was the first time I’d visited him in his new home and I hadn’t seen him for longer than normal. I had expectations of the visit. I felt good about going to see him as I’d heard good reports from the staff and his paternal grandmother. I wanted to feel he was pleased to see me. I wanted him to enjoy my visit. Instead, I felt like I was making him more stressed and unhappy. He didn’t seem to want me there. I left after an hour feeling deeply sad.

I’m recovering from a bad virus (the second in as many weeks) so I went to bed and sobbed. I felt so useless as a parent. I felt like I’d offered nothing of value. I longed for a connection with my only child and felt none. This struggle has been there for so many years. While many parents of autistic people find ways to reach their children, I never have. It’s not through lack of trying although in all honesty I’ve wanted him to enter my world rather than vice versa. The pain of bringing him games or dressing up clothes that he didn’t want has never gone away. As a small child he was happier playing with the bathroom taps or light switches. Not ideal. I tried to reach him but I had so little energy myself dealing with a chronic illness which eventually led to hospitalisation. He eventually lived with his ADHD father and life was easier but there’s always this sorrow that I don’t know will ever leave me.

I talk about acceptance a lot and I know that the ultimate acceptance is love – loving someone for who they are. This means accepting the child he wasn’t and the adult he isn’t and loving him for who he is no matter what. Even when he was a young child I knew this, at least in theory, and tried hard to do so. Of course I have always loved him as he is my child, but putting acceptance into practice has felt a whole different ball game. My son arrived tied up in my hopes and dreams of being the mother I never had and the need to experience a kind of childhood through my son which never materialised. Grief is multi-faceted and complex; it isn’t just one thing, but a whole kaleidoscope of emotions.

My son doesn’t exist to satisfy my need to feel loved or valued or connected. I have had to find those things elsewhere, including within myself. He could never give me the acknowledgement or validation that I craved. He couldn’t show me I was doing okay. In fact, he brought me to my knees many times, believing that I had messed everything up, got it all wrong, failed so utterly and completely. That has been my journey. It continues to be. I have no idea whether this was all meant to happen, was planned in some way, or whether it just randomly happened that evening in 2000 when I took his father back despite my better judgement. Life has a funny way of turning out. All I can do is surrender to it, trust it somehow, and believe in the perfection in this moment. And indeed, love is thinking about what my son needs now in this moment and being present to him, even when it’s different to how I wish it was.

While I was crying earlier the New World Symphony (Largo) theme suddenly started playing in my head, which many will know in the UK as the music from the Hovis bread advert. I have taken comfort in the lyrics which were created to fit the beautiful and haunting melody. My son is now in his new home and this is about me finding my journey home to myself, which ultimately, of course, is all we can ever do.

Going home, going home
I am going home
Quiet like, some still day
I am going home

It's not far, just close by
Through an open door
Work all done, care laid by
Never fear no more

Mother's there expecting me
Father's waiting too
Lots of faces gathered there
All the friends I knew

I'm just going home

No more fear, no more pain
No more stumbling by the way
No more longing for the day
Going to run no more

Morning star light the way
Restless dreams all gone
Shadows gone, break of day
Real life has begun

There's no break, there's no end
Just living on
Wide awake, with a smile
Going on and on, going on and on

Going home, going home
I am going home
Shadows gone, break of day
Real life has begun

I'm just going home