Month: Jan 2024

A beautiful visit with my son (autism)

/ sarahlissyjenkins / 14 Comments

I had a beautiful visit with my son on Saturday at his long term residential placement. Long term readers of my blog may remember the nightmare I went through in 2022 when he was in an entirely unsuitable placement that was too small and busy for him. I would regularly turn up to see him only to find him in a dreadful mood, usually saying ‘Bye’ straight away to indicate that he wanted me to leave even though I’d just arrived. But the worst of it was the fear of getting a phone call from the staff to tell me the latest thing he’d done, i.e kick a member of staff, punch anther resident, throw the vacuum cleaner across the room, tear up lining from the bathroom floor, pull stuffing out of his mattress – the list goes on. I used to dread every time my phone rang in case it was about him (it often was) and the latest incident. Unfortunately the violent incidents got worse until he was evicted 3 months after the placement started. This led to a whole new nightmare of a temporary placement, followed by a hospitalisation, then another temporary placement. In total this went on for a year and a half, right up until July 2023 when he finally moved into the recently built placement where he has his own little annexe in addition to full access to the main building if/when he wants to socialise. There’s a swimming pool, trampoline and sensory room. 24/7 staff to support him and the other residents.

I’ve seen him a number of times since he moved in and he’s always been calm and happy. But Saturday’s visit showed me just how far he has come. It was the birthday of another resident and a party was taking place in the lounge. I had just arrived and was sitting with him in his annexe when a staff member asked if he would come to the party. Initially, my son refused, probably thinking he would have to leave me in his annexe. But when I said I’d accompany him he got up straight away. We sat in the lounge where other residents sat around a table, laughing and shouting, lots of staff getting them food and drinks, music booming on the loud speakers. Normally all this would send my son into a tailspin. But he found his space – an armchair on the other side of the room – where he could watch from a safe distance, willing to be part of it as long as he wasn’t required to get too close. From there he proceeded to observe and smile and even clap when encouraged. Staff kept coming over to say hello to him and take his hand, which he loved. It was really amazing. Wonderful in fact. Just to see him where he belonged was the best gift in the world.

It makes me feel so ridiculous to remember how upset I was when he couldn’t cope with my visits at the previous placement and I’d had to sit outside to wait for a taxi literally five minutes after I’d got there. It had felt personal. My own son didn’t want to see me. Due to the grief I was experiencing over my childhood as well as having a severely autistic child, I felt so devalued and disconnected. I knew deep down it was about my son being over-stimulated and not about me at all, but I was in the thick of sadness over how impossible the years with him had been, as well as longing for a basic connection with my own child who had been moved away from family for the first time. Ironically it had been a time of relief and hope for me that I could see my son on neutral turf, as opposed to visits at his father’s house, but it was an incredibly stressful time for him, and he was in pain too.

Now, in his new home, my son is completely different. He’s relaxed and happy being amongst his staff and peers. AND he’s always delighted to see me. He greets me with a big smile and clearly loves me sitting with him and chatting to him, sometimes showing him photos, sometimes playing videos on his tablet. The emotional connection is palpable, even though my son is mainly non verbal. It feels like the rainbow at the end of a terrible storm. I had to move beyond my grief to meet and love him on his terms, whilst he had needed to find his place in the world from which he could encounter and appreciate the people he loves. What a lesson. What a gift.

Feeling the need to cocoon

/ sarahlissyjenkins / 6 Comments

I’ve been a bit quiet this year so far. I’m still around and I ‘like’ and comment on other people’s posts on occasions, but I haven’t had much to offer here. At the beginning of the year I was struggling with grief and trying to work out exactly what I thought and believed about my mother’s soul (because despite my spirituality, it’s a bit different when a very close relative actually dies) until I was hit once again with the realisation that my mind was the problem. It was trying to work everything out…and, well, good luck with that! People over thousands of years haven’t managed it with any certainty so why would I! But the same realisation brought immense peace to my being. My mind quietened (to some extent) and I fell back into a state of flow, not really grieving, not really giving much energy to other than the present moment.

But then I got quite sick with a nasty virus which floored me for a week, followed by having to write a statement for the coroner who is in charge of the inquest into my mother’s death. I spent a few days last week writing around 2500 words on my experience of my mother’s illness and decline, the treatment she received by nurses and carers, the failings I witnessed, and her eventual death. I like to think I’m quite a resilient person, but writing it was incredibly painful on every level – emotional, spiritual, physical. I had to re-live those few months by looking at my mum’s texts to get correct dates and information about how she was feeling and when. It was a huge task and very distressing.

Since then I’ve been feeling like I’ve hit a kind of burn out. I’ve started turning my phone off for part of the day which I’ve never done before. I’ve been very irritated with minor situations. My mind is whizzing again, not able to step off the treadmill. I did some intense meditation last night which helped. I did some deep breathing and was struck by how tight my stomach muscles were, as well as how sick and unwell my body felt. I think it was the adrenalin. My body does not cope well with it. The years of trying to care for my son have left me with very limited reserves. I took myself to bed. Although today is better, I am struggling to interact, and my phone is off.

I don’t want anyone to think I have stopped updating because I haven’t. I think I just need a few days to let my body heal. Mental stress seems to be the worst kind of attack on the system. Also, I think I have hit a new phase in my spiritual growth where I can’t tolerate upsetting things like crime shows like I used to. Maybe it’s temporary due to my mother’s death, but it feels deeper than that. I’m reading feel good and/or inspirational books and watching spiritual videos, but that’s pretty much it. I don’t have much energy.

So this is me. I am off to cocoon myself for a bit. Hopefully I will be able to write from a deeper place on my return!

My mother, death and infinity

/ sarahlissyjenkins / 1 Comment

I dreamed last night that my mother had gone missing. It’s the second dream in a week of that nature, but this one seems more significant. My sister was panicking on the phone to me, saying our mum had disappeared and her phone was turned off. She said that her partner was going out to look for her (it was dark, so I’m assuming it was night time). As she told me this I turned around and saw my mother standing there looking at me. She was dressed in white. I told my sister that ‘Mum is right here in X cemetery.’ I said the name of the cemetery, which doesn’t actually exist in real life, but has the word ‘sand’ incorporated within it. My mother then proceeded to remove my wrist watch, which she replaced with another one. I can’t remember any obvious difference, except that maybe the second was a bit newer. The action felt significant though. After this, any remaining details are too vague to recall.

I woke in the night utterly fascinated by this dream. Why was my mum removing my watch and giving me another one? Was she actually visiting or an aspect of my subconscious, or one and the same? Obviously I can’t really know, but here are my thoughts on what the dream means, for my own curiosity.

I am trying to process the death of my mother (of course). She has disappeared from the world of form, and while we all have ideas and/or people’s experiences of what happens when the body dies, nobody actually knows for sure. So I am searching for resolution, and my dream world is fertile soil within which I can find healing. My mother appeared to me in white, which I assume represents the light of spirit and eternity. She was in a cemetery, which represents death and the transient nature of form. Sand, which was in the name of the cemetery, symbolises the passing of time as well as the miniscule speck of infinity. Then my mother changes my watch to another one. Maybe she is saying that a period of time has come to an end, but that a new one is starting; an awareness of what it means to be alive. In short, the dream is about grief and coming to terms with the loss of my mother in her earthly form, but more than that, it’s about understanding time in the context of eternity, which is what I feel my mother’s presence is all about. She isn’t missing; she may be ‘gone’ from this timeline, but her spirit is very much with us.

Spring flowers in the snow

/ sarahlissyjenkins / 3 Comments

Whenever I see daffodils, daisies or buttercups or any other spring flowers sprouting through snow, I feel intense joy inside. It reminds me of a dream I had years ago where I was walking along a path covered in thick snow and suddenly I saw a beautiful daffodil shining its golden petals across the otherwise endless sea of white. Emotions are so much more intense in dreams and I started to cry as I realised that life does not die, it renews itself over and over no matter how harsh or barren the winter.

That beautiful daffodil, and many other flowers, reminds me to always have faith in the intelligence of life that is working in ways we cannot see while in the depths of our own personal winter.

A rather anxious start to 2024

/ sarahlissyjenkins / 2 Comments

A belated Happy New Year 2024 to all who read this. I hope it brings you all you need.

Mine hasn’t started on the best note. I took my dog to the vet with what I thought was an abscess on her paw (in a nail bed). It turns out it’s a growth of some sort. The vet has given me a ten day course of antibiotics for her as it seems to be infected, probably from her licking and biting, but after that has cleared up he will need to insert a fine needle into the growth to determine what it actually is. Of course I’m worried that it is malignant, especially as mast cell tumours in dogs are apparently common and the nail bed is one place they can occur. My dog is old and I already know that surgery will not be an option for her, nor do I want to put her through chemotherapy or radiotherapy. It would be a lot for a 14 year old dog who already has a fractured cruciate ligament, arthritis and epilepsy. I would just want her to be kept as well as possible until her suffering becomes too great.

But I know my mind is running away with itself here. I just like to be prepared. It’s my way of facing yet another painful loss after my mother last year. This is happening literally weeks after the funeral, while still waiting for the inquest hearing to take place. It’s as if the universe decided that I’ve got through the worst of it, so it has given me this to deal with. Thanks very much. I know everything and everyone passes away, but couldn’t this wait another year at least?

My dog doesn’t seem unwell aside from her existing conditions so I am hoping this may turn out to be benign or some other sort of skin lesion that may clear up with the antibiotics. If it isn’t, what can I do but trust the process of life here, including the intense sadness I will face at the prospect of losing her? I was always going to lose her, that was a given; animals just don’t live as long as us and it’s such a horrible thing to accept. I will never be ready to let her go but I know I will be strong enough to do what’s right for her when the time comes because my love for her is so deep. When there’s incredible love, fear doesn’t exist. In the moment of making the choice for her, it will be out of a place of love. I know that one hundred percent.

In the meantime, all I can do is feel the preciousness of our bond, knowing all forms are temporary, but the love that connects us cannot be destroyed.