Tapestry of love and grief (autism)

/ sarahlissyjenkins / 5 Comments

Yesterday I met my son at a Costa’s local to me – two carers from his placement drove him down. Apparently he spent the entire journey saying ‘Mummy’ which was probably not only due to excitement but trying to process the uniqueness of the event, as the only other time he had been told he was going in a car to visit me was when they picked me up from the station! This time it was a longish journey of around an hour, so plenty of time for him to process and look forward to seeing me, which he clearly had. I spotted one of the carers while paying for my coffee, as he had just found somewhere to park and was waving to let me know they had arrived. I took my coffee and sat by the window, then on seeing them bring my son over the road to the shop door, I got up and greeted him.

He was grinning widely and looked incredibly happy and chilled out. This was a massive relief. The prospect of meeting in a public place had made me slightly anxious due to plenty of memories of taking him out when he was a young boy and having to try and stop him suddenly grabbing things (or people) as he had no concept of ownership or any sense of right and wrong due to his autism and severe learning disabilities. He had absolutely no impulse control. At nearly 24, he is a lot calmer, although I wouldn’t say he has any more awareness of what he should or shouldn’t do, rather that he has learnt through the consistent support and discipline of trained carers. I was and still am limited in terms of my physical build (short and petite) and ongoing health issues. My son needs two strong men to support him in public places and luckily this is what he now has.

So he arrived and said ‘Mummy’ once again, clearly very pleased to see me. He sat at a table with me and was perfectly happy listening to me talking and showing him videos on my phone (mainly of trains, which we both like!). I showed him an ‘upside down’ train from Japan, which interested him a lot actually. I don’t normally grab his attention for long, but the concept seemed to throw him. He had a Thomas the Tank engine toy with him, and had bought with me two others – one of the bus character ‘Bulgy’ and the other of the train ‘Arthur.’ He had a lot of the character trains from childhood and gradually I’ve been giving them to him to take back. The only toy I won’t be giving him isn’t a train at all – it’s a ragged wreck of what was once a toy rabbit called Flopsy – I keep it under my bed as a momento, as he took it everywhere from babyhood until about 12 or 13. He had such a deep emotional attachment to it that it was proof, if it were needed, that he feels deep love, even though he shows it in his own unique ways.

The only slight incident was when he suddenly got up, went to the fridge next to the counter, pulled out a bottle of fizzy Tango and took it back to the table. I panicked inside, got up and asked him to give it to me, telling him I needed to pay for it first. He started to make moaning sounds and my heart sank, for this could easily trigger a meltdown. I was very aware of a small child of about 4 sitting with his father a short distance away and I was scared that my son would suddenly kick off. However, he did give it to me, but one of the carers who had been sitting a short distance away overheard and told me it was fine, to give my son the drink and he would pay at the counter. I was relieved that he took control and that I didn’t have to anymore.

There’s always a subtle ongoing grief when I see my son and I felt it perhaps more strongly yesterday due to being out in public. I love him and I’m proud of him, but it’s the grief of wishing things were different; that life is like this for us both. I stay very present with him so I know that I have healed much of the trauma that shaped my life as a parent, so that is a real blessing, as I can enjoy the moments for what they are now and connect with him in a way that he can feel and respond to. But there is an ongoing thread of grief that weaves through my life, and perhaps I wouldn’t be without it now, because the relationship with my son is a tapestry of rich emotions and beautiful moments despite the pain and the longing and the complexity of it all.

He left with his carers, clutching his bottle of Tango and his trains, and I waved goodbye as they went to the car. I saw him for just under an hour, but less is more with my son so that he doesn’t become overstimulated. Once again, I am so thankful that he is taken care of so well, so that I can enjoy these precious times with him.

A poignant visit to see family

/ sarahlissyjenkins / 1 Comment

Recently I visited my aunt and uncle by train. My aunt is my mum’s older sister so the connection is important to us in the wake of my mum’s death, even though, sad to say, there was very little contact while my mum was alive. This is because my mum always felt overshadowed by her older sister; she believed her mum favoured my aunt and that her mum wanted her to be a boy. It stayed with my mum throughout her life, which may explain why she struggled with her mental health and had very turbulent relationships, whilst my aunt settled down young with the man she would spend her entire life with. Or maybe it was just the luck of the draw. Either way, it affected how my mum felt towards my aunt so there was never much interest in that side of the family.

It is therefore so interesting to me now, with my aunt in her late 80s and my uncle early 90s, to hear about the cousins I’d only vaguely known by name growing up, and their children, and some cases even THEIR children! The family line just goes on. Sometimes I feel sad at how much I missed out on, as I was a very lonely child who didn’t fit in with my much older siblings or their children. Maybe I’d have had more in common with my cousins. Then again, from what I can remember, probably not. Most have little to do with my aunt and uncle now, with the exception of my eldest cousin, who helps them out and wants to come over while I’m there soon (she is the cousin who took in my mum’s tortoise Tilly), and another cousin who sadly died a few years ago. I think we are all very different. But while I listen to my aunt recounting the years, I feel like I’m looking through the other end of a telescope into the past, into what might have been.

I’m very aware that my mum might not approve of my visits to my aunt and uncle. I’m doing this for myself, because there is a love there that matters to us all, but also as a way to retain the connection to her and to her history. It makes me sad to know that it would be difficult for her. I hope that she may understand and realise how important these visits are now. She is at the forefront of all of them.

The train journey itself was a poignant reminder of the virtually infinite number of trips I made to my mum’s house, usually with my dog in tow. The journey took three trains, with two changes in total. The journey to see my aunt and uncle is the same apart from the final train, which is on a different route. On this occasion I found myself sitting inside the final train waiting to leave whilst looking across the to the train on the opposite platform – the one that would have taken me to see my mum. I have to admit, that hit hard, very hard.

Life is change. Life is loss. Life is moving forward.

Life is knowing the love that we are and sharing that  with the people we can.

Summer days

/ sarahlissyjenkins / 6 Comments

OK so it isn’t quite summer, but the weather doesn’t seem to agree. I met a friend for lunch near the seafront last week and enjoyed a quick glimpse of the local coastline and pier. There’s a ferris wheel up and running already, not that I will be going on it…I can’t even tolerate sitting in a normal car without medication! There’s a ghost train down the other end though, so maybe I will try that this year! And of course the dodgems, although they’re no good for my back.

I’ve also taken some photos of birds to try and identify them through the Merlin app. I do know what they are, or at least I think I do. I suspect one is a Great Tit, but I really want to get it clarified. If anyone can make it out please let me know! The app isn’t always able to make out the birds from my distant pictures.

My health is not currently the best, but the weather is keeping me relaxed and happy and reading in the sun. I will write a proper post soon.

Nice calm visit

/ sarahlissyjenkins / 13 Comments

Today I went to see my son to give him his ‘egg’ – actually it was a piece of cake with chocolate icing and three mini eggs on top- and he thoroughly enjoyed both the food and my presence. He was in a fabulous mood. He had been helping staff clean his annexe on my arrival, so he was wearing plastic gloves and clutching the vacuum cleaner, which he immediately switched off when he saw me. From then on he sat on the sofa watching his favourite -Thomas- while I chatted about my news and asked about his. Even though he is mostly non verbal, given the right mood he will engage and acknowledge activities that he has done, particularly trampolining and swimming, which are his favourites. He likes to look at photos of himself doing these activities, probably to remind himself of the positive emotions at the time.

It is lovely when he’s so calm and happy to be present. There was no hand biting or shouting today. He said “Mummy” when I arrived and looked so pleased to see me. Despite everything we’ve been through, how awful life was for us both, we retain a connection as mother and son, and I’m massively grateful for it.

Thinking about my mum’s tortoise

/ sarahlissyjenkins / 5 Comments

Two months after my dad died my mum suddenly bought herself a tortoise. She didn’t mention it so I was astounded when, on the first visit after the funeral, she came downstairs cupping a tiny baby tortoise inside the palm of one hand.

I thought even then that there was probably something in her subconscious mind about seeking longetivity and avoiding the idea of her own mortality.

Tilly the tortoise grew very fast and was thoroughly indulged by my doting mum. Tilly had the run of the house and garden and the best vegetables and fruit my mum could buy. A particular favourite was mango, which may have explained her rapidly expanding size. Females are usually bigger than males, according to the vet, but Tilly was especially large.

That first winter she hibernated at home with me as I had more space at the time. I kept her in a special fridge, inside a tupperware box with holes. She stayed there for a few months until March when she woke to brighter mornings and daisies and daffodils. She enjoyed a rummage or two in pools of warm sunlight in my front garden before my mum collected her and took her home.

She had a happy life. And boy was she fast! She was very nearly called Speedy for that reason. The stories about tortoises being slow were clearly written by people who had never owned one.

She spent 8 years with my mum.

A few months before my mum died in 2023 she arranged for Tilly to live with a cousin who had several tortoises of her own. Right from the day she moved in Tilly settled and has been the focus of doting attention from the others, I think all male, possibly apart from one.

I haven’t seen her since, but the photo is very recent. Tilly is the queen bee, enjoying a bath with her male friends.

Tilly brought a lot to the last 8 years of my mum’s life and helped her cope in the wake of losing my dad. She was a grounding symbol of solidity and strength. She loved her very much. We all did. She loved having the underneath of her chin scratched. And she quickly learned my mum’s voice and her own name.

I miss those days. But it is wonderful to know that Tilly is happy and thriving. My mum would be delighted to see it.

Dropping my anchor

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I listened to a fascinating YouTube video the other day called ‘You are your own anchor’ by Michael Singer. I don’t often write about what I’ve watched but this one was so helpful to me that I took notes. It provided a powerful visual analogy that I will draw on going forwards. I have added some notes of my own and a critique at the end.

The spiritual path is always, ultimately, about letting go of the ‘self’. This is the conditioned self or ego. Imagine you are in a hot air balloon, tethered to the ground. The tether, or anchor, represents our worldly attachments and desires. For as long as I am attached to the world, the anchor remains in place and the balloon cannot go up. This includes when I am fighting against, or resisting, something, for I am still invested in ‘me’; in the personal self.

Each of us is involved in the ‘dance of the chi.’ Each of us is energy, Divine energy. We have a beautiful spiritual purpose in this world; to recognise our soul and reconnect with Spirit. If nothing is holding me down I will rise like the balloon, back to Source/God and ultimate freedom and peace. Instead, the same Divine energy is being used to sustain the conditioned self, which weighs me down and feels like a burden.

The key is letting go. The more I let go of my attachments and resistance, the less there is to hold me down in the balloon. This doesn’t mean pretending difficult events are fine or that I don’t feel bad. On the contrary, it is important to fully accept what is happening in the moment, then let it go. Don’t tie a personal self to it. Rather than fight or force any aspect of reality, simply watch it happening. This includes my own thoughts, for they create my reality. All of it is clouds passing by. It’s just the weather. Watch and notice. Keep letting go of thoughts until they pass away.

Don’t try to hold onto the balloon. It isn’t tied in any way; it’s simply the self holding and preventing it from going up. Don’t even focus too much on teachings or other practices because if I’m still invested in the world they’re the equivalent of re-arranging the furniture inside the balloon and wondering why it still won’t go up. The key is to let go. Keep watching the dance until the dance of the chi dissolves into something far more vast and beautiful.

This is what I understood from the video. What I will add is that everything has its time and place. Everything. A commonly heard term is ‘spiritually bypassing’ and it’s important to be careful about this and not disregard one’s own inner truth in favour of an assumed higher state of being. If we’re not ready or able to let go, that’s absolutely fine. We develop a conditioned self as a way to survive and relate to others. Oftentimes, we need it to cope with trauma. Sometimes, we need to share our story and be seen and heard as a person. We develop a conditioned self for many reasons and it serves many functions, some probably unknown to us, but all part of the bigger picture and ultimate Purpose. I fully agree with Carl Jung who said that we need to develop a healthy ego before we can transcend it, otherwise all sorts of psychiatric, spiritual and other issues can and have sadly arisen in many people who have dropped their anchor too soon, usually forced through some spiritual practice.

Each teaching is only a facet of the truth; an offering. So it’s a matter of taking what resonates with where you’re at right now and disregarding the rest. As always listen to your intuition or inner guidance: it knows best!

Spring has come (in more ways than one).

/ sarahlissyjenkins / 6 Comments

I am certainly feeling the joy of spring right now, as well as summer (the weather has turned really mild, so I wonder if a very early summer is on the horizon, if temporary) because I have some good news: my dog has recovered!

I admit I knew very little about arthritis other than the fact she’s had it for about two years prior to this recent flare up. Other than giving her a daily joint supplement and taking her out daily, it wasn’t something I worried too much about, simply because it never really bothered her all that much…until the weekend before last.

She was in so much pain I honestly thought this was it. It broke my heart. I read that arthritis was progressive so I assumed it was – well – progressing.

But I also read that a grain free diet often benefitted arthritic dogs (and perhaps people?). Straight away it occurred to me that I had recently changed her dry food. A quick glance at the packaging told me that it contained wheat.

That had to go. I changed her dry and wet foods to grain free only. I also added hemp and salmon oils to her food daily.

Almost straight away I noticed a difference. Her pain level was decreasing. Each day she seemed to mobilise better. Her front left paw was a persistent problem, but that has now ceased to bother her too.

Compared to how she was, it’s like a miracle. Earlier today she was walking around the little stone area outside my front door to sniff the scents. She would avoid any uneven ground if her joints hurt.

It is such a blessing. She is 15 so I have no idea how long she will remain stable, but I will take any time with her that I can get.

Dark days (in my heart)

/ sarahlissyjenkins / 15 Comments

Spring has arrived but my life feels very dark indeed.

My beautiful 15 year old dog has taken a sudden turn for the worst and is in lots of arthritic pain. She is already on an anti inflammatory medication plus joint supplements and they’ve kept her functioning brilliantly for two years. There is an injection which I want to try but I don’t know if it will help her now. The vet is calling me tomorrow.

Somehow I always knew losing her would be worse than anything else. If you’ve truly loved a dog, I suspect you’ll understand why. She has been with me through so much.

I know she’ll be going back to Spirit but in this depth of grief and loss it’s little comfort.

My heart is broken and posts may be sporadic for a bit, if you wonder.

The return of the Sun

/ sarahlissyjenkins / 3 Comments

The Sun is out and it actually feels warm! Spring has arrived, at least in the south of the UK. I don’t know about anybody else, but it makes me feel so happy. Nature is waking up. While out with my dog earlier I spotted a beautiful yellow butterfly flitting in the breeze, then a large honeybee buzzing around a lavender bush. My heart seemed to swell….I feel like the light of my soul also wakes up and shines brighter this time of year, although, of course, it’s always there no matter how dark it gets. Maybe it recognises itself in the resurrection taking place all around. Nature is a constant reminder that the darkness doesn’t last and the Sun will shine again, as it was never actually lost.

Hurrah for the return of the Sun and some warm, bright days, bringing along the beautiful diversity of insects, birds, flowers and other wildlife. May every moment of the spring and summer seasons be met with gratitude and love for the part that we all play in this incredible Divine dance we call Life.

Monday: A mixed bag of a day

/ sarahlissyjenkins / 5 Comments

Monday was a mixed bag of a day. I visited my son by train. The journey itself was fine, very easy; only one change with a five minute wait, and my son met me at the station with his carers. In fact, it was all very relaxing, especially as I enjoy train travel, or at least when they turn up on time and I’m not under pressure. My son was sitting in the back of the car when I walked out of the station forecourt and he looked very happy to see me. It felt wonderful to be met like this by him, especially as it brought back memories of my mum waiting on the platform for my train to arrive, and the rush of joy on seeing her as it pulled in.

He was smiley, in a good enough mood, although a bit confused and unsettled that I’d arrived by train. He doesn’t like change of course; most autistic people don’t. He had been picking old scabs off his hands for the duration of the car journey – around 10 minutes – so by the time I climbed next to him he was covered in blood. Luckily I had a toilet roll in my bag (don’t ask) so I wiped some off, but once we got to his annexe I had to use the bathroom sink to wash him properly. The carers said he just wipes cream off, which I can understand. I felt really sad seeing the damage he had done. It’s hard to explain how horrible it feels unless you’ve witnessed someone self-harming in some way. It’s utter helplessness, and as much as I keep saying ‘Please don’t do that, you don’t want to hurt yourself’ it makes no difference, because deep down he DOES want to hurt himself. Otherwise he wouldn’t do it. Even though he is mentally disabled, he has self-harmed enough to realise by now that if he picks or bites his hands, they will hurt. He is driven on impulse, through frustration or anger, to harm himself as a coping mechanism. Everything we have tried – and we have tried so many things – haven’t helped.

After cleaning up the blood I wanted to sit and enjoy my time with him. Unfortunately it was this moment when I realised I couldn’t find my bank card. I had tucked it inside the pocket of my phone case….but it wasn’t there. A gentle but rising panic started to set in. I asked the carer, as calmly as I could, whether it was inside the car, but as I searched all the pockets in my rucksack I knew it wouldn’t be: It had almost certainly slipped out when I turned my phone upside down to scan my e-ticket at the station barriers. Sure enough, it was nowhere to be found. I went into my app and cancelled the card. Thankfully it had not been used. I had my train ticket, and my sheer luck I also had my bus ticket, which I needed to get back to the station plus from my own station to my home. And just as importantly, my front door key. I had all the means to get home, I just had no money!

At this point I relaxed. Everything was okay. I could get home. That was what mattered. It was disconcerting to say the least, but it wasn’t the worst thing in the world. It could have been a lot worse. It was interesting to notice how I felt without the security of my bank card. I felt a little spacey, adrift. I wondered whether someone would try to use it, even attempt to steal my identity. Not that they would get far with a cancelled card. Strangely, I also felt a bit lighter. I don’t mean to sound trite, but there was something freeing about realising that I could lose my bank card and still be fine. I know I was lucky to have my tickets to get home and obviously none of my money had actually gone; only the means. But there was a tiny but tangible sense of relief at knowing I was okay despite having no money on my person.

I left my son in a chilled out state watching Thomas the Tank Engine and got the bus to the station, all the while feeling grateful that I had my bus ticket and I wasn’t calling various people for help to get back home. At the station, a man paid for a bottle of water for me (as my son had been determined to take mine) so that renewed my faith in people being helpful and everything working out. The only downside was that the bus back from the station was very late and it wasn’t the bus that takes me close to my home, so I had to walk further than I realistically can, leaving me in a lot of pain to this day. But that was a small price to pay for getting home.

It was only when I got home that I realised I could have used Google pay, if I had set it up. I didn’t know my bank details but I could have found them on the app, at least for my credit card and not the card that was cancelled. Oh well, I will know that next time. Apparently most people don’t even take a plastic card with them now. Who knew?!

What the mixed bag that was Monday has shown me that I deal with challenges so much more easily than I used to. Losing my card didn’t ruin my visit with my son. Once I knew I could get home, all was well. I accepted the situation without resistance. The real sadness was my son’s hands and wishing he had the same capacity to manage his emotions and challenges that he faces in his own – albeit very different and more limited – life. But he doesn’t. He manages them in the best way he can, I guess. That’s all anyone can ask of him.