Busy busy

This week seems to have gone extremely slowly, but so much has been fitted in when I sit here and think about it...

It began, I suppose, with a sleepover for four girls (plus our two). By the time one asks for a friend over, the other is left out so we invite a second friend, then they seem to multiply 🛊🛊🛊🛊🛊🛊

We love it when our two are happy and surrounded by their mates, so we don't mind one bit. Besides, ever since our children were little, we have always seemed to be the hgouse where people come and congregate. I prefer this to not knowing where they are. I can't imagine miss A going out to play and us not knowing who she has gone to play with or where she is at any time with how unpredictable and impulsive she is. What ever nerves I have left would be shot!

Miss G wouldn't cope with the uncertainty of going out to play with no direction or plans, so having her friends come here is the best option for her. She does go out to play now and again with her friends, but they tend to play outside our house anyway. Miss A does that too sometimes, especially on a sunny day in the colder months.

Of course we have days where we just need to be as a family, and those are the times when the children are all allowed in our garden but not into the house (except emergency comfort breaks). They are all pretty good and understand I need to rest a lot so know to be quiet if I am resting. 

As I type this there are six girls here. Two are inside watching YouTube andthe rest are out in the hot tub in our back garden. They have already had a BBQ here for lunch, played with the parachute on the trampoline and had a water fight (not all the girls were allowed in the hot tub today so we included them by giving them water pistols, water balloons and the hose pipe). 

I have been sitting outside in the garden by some of the plants we have grown, swollen feet up on a garden chair, with three dogs crammed around me. I had intended on reading my book but honestly only managed a couple of pages. I spent the rest of the time watching everything else going on and chatting to everyone. I chose a different spot to my normal garden space today. I usually like to stop, surrounded by the lavender, gladeoli and foxgloves we are growing, but today decided to sit by the flower seeds we planted earlier in the week and the French lavender instead.

I have a number of books to read now. The home link library delivered twelve for me, of which I have started two but not got that into them. I can't get to the boxes where the rest have been put (one of my main frustrations). I also have a few I have bought from used bookstores online or from our trip to Waterstones a couple of days ago. 

Hubby and I found ourselves alone, both girls at their friends' houses. As usual whenever this rarity occurs we had no clue what to do. We didn't want to waste the chance by cleaning or sorting out the house so went to a nearby town for a wander and a hot drink. It was there that I spotted the bookshop and couldn't resist a visit. I prefer used book shops and love the smell of books, but new books are always good too. I am trying to expand the genres of books we have available in the home. We seem to have numerous nature books, both fiction and non-fiction and books about autism and PDA, but not a lot of other options. With the new school approach we plan on using in September (no point until then with all their friends here) we need to have different books available as well as library visits planned regularly. 

So, I purchased a few (ahem...) interesting titles that I want to read and are suitable for all. They include:

And Still I Rise by Maya Angelou

How to be humanby Ruby Wax

The PDA Paradox by Harry Thompson

Monster Tamer Girls by Mujirushi Shimazaki

Have You Eaten Grandma? by Gyles Brandreth

Happy by Fearne Coton

and a few magazine style booklets about Dinosaurs, History and Minecraft.

Hubby has also purchased a couple of books recently, both for me admittedly, about minecraft since I have begun to access the PC more now that I have coloured acetate screens covering the computer screen to prevent my migraines and eye disturbances. I started building my own world, trying to follow guides in Cool Builds in minecraft from game master, but got confised so many times I went off script and gave up on the book. I felt it was written for people who already understand Minecraft and was missing out too many steps for me to follow without regular googling sessions inbetween stages. The second book he bought me was an official Mojang Minecraft guide to Redstone. I totally overloaded myself with the first few pages, but once I found the first build to follow, it all started to make more sense to me. 

I also bought a kindle book this week called Cautionary Tales for Children. I read sections of it out loud to my daughters and Miss G's best friend whilst we waited outside the vets which made everyone giggle and feel terrified at the same time. Most of the tales ended up with death or serious injury to the child involved with no niceties or happy ever afters to be seen.

As you can probably tell from all of the above, i am still trying hard to distract myself. Everything is punctuated with unanswered texts to my son or his biological father, the knowledge he has seen my WhatsApp message and not replied, or has been on WhatsApp and deliberately not opened my messages. The mind games being played by him and his father are so hard to cope with and are really messing with my own head. I am not sleeping well atall- last night I was still awake at 3.30am and then at 7am, 8am and finally 9.30am. I am trying my best to not nap in the day in the hope that will make me more tired, but my mind won't let up. The house goes quiet except for the sound of dogs and people snoring and my brain seems to get louder. I can't decide what to do- whether to keep messaging my son in the way I have been, just updating him on what we are doing, sending pictures now and then and memes, or whether to give up because then the onus would be on him. It is so hard.

Whenever there's anyone here, the mask goes on, everything is fine, don't worry about me, nothing to see here. I find it exhausting though. Pretending it is OK seems wrong, but noone wants to know the truth. I haven't wanted to talk to my best friend about it or talk small talk for the sake of it either. I just want to be in the family, at home and busy.

Also this week we have been to a theme park. We went to Gulliver's and had a wonderful day together. I felt it was pointless me being there except for support for Miss G when she couldn't go on the scarier rides that Miss A loves. 

We have also been to a dinosaur themed farm park, discovered Floof,  been to the drive in cinema to see The Life of Pi, and had a terrible accident happen to our smallest dog.

The farm park was so well organised when it came to being covid-safe we didn't feel concerned at all. The same when it comes to the drive in cinema too. We even had our food and drinks delivered to our car windows!

When we got home on the evening of the cinema trip (where we had taken two friends aswell as our own), the dogs were excited ,as usual, and rushed to greet us at the doors. When I looked down at them to say hello, I noticed Chica's eye was bleeding. She is only tiny (a chihuahua crossed with a yorkshire terrier- a Chorkie). I immediately told hubby and got onto the phone to the emergency out of hours vet (of course this would happen in the evening on a weekend during a pandemic!). They arranged for her to be seen that same evening and she was given painkillers, antibiotics and anti-imflammatories too. She came home very chilled out and has been spoilt ever since. 

She went to see our vet on Monday and it was confirmed that she is blind in that eye now. We don't know if it will be permanent or temporary bless her. She sesems to have adapted very well. Her eye is far less swollen than it was but the white is red and the pupil is cloudy. Now and then I am testing her vision and there is still nothing there now, five days later, but maybe it's early days- I don't really know. Later that evening, hubby spotted a trail of blood near their bed. It looked as if the dogs had been in there when we got home and perhaps Chica had been pushed against the wall in the rush to get to greet us first. I guess one of the others must have caught her eye with their paw because the vet told hubby there is 'a significant scratch on the eye'.

All in all it feels like someone is trying to test us all. I don't know what else there is coming but I do know I have had enough now. I have asked my GP for help with my mental health and have spoken to something called 'the access team' who said they are referring me to something called 'secondary care'. I don't understand or care about the jargon used, I just need some support as soon as possible because I can feel myself going under and have done for weeks now.

What do you see?

On our last walk outdoors we visited a local garden that has reopened to the public following closure due to coronavirus. Outdoor attractions seem to have the current advantage with the pandemic and rules over face masks. I certainly feel safer going outdoors than indoors anywhere at the moment, regardless of how much PPE people are covered in.

Things were slightly different to pre-covid19, we had to pre book before arriving at our designated time slot and then social distancing was advised throughout the area, although not always adhered to. There were arrows on the ground in an attempt at a one way system and most of the park area was closed for the children. Nothing felt awkward or over done.

We took hundreds of photographs along the way of beautiful plants, fairies, water birds and wooden sculptures. Here are just a couple of examples:

Not even the ferocious mosquitoes and gnats could put us off hiding under a tree to have our sandwiches, crisps and warm drinks whilst overlooking the lake and watching others, sitting at tables trying to pretend the rain wasn’t bothering them. 

Towards the end of our time there we meandered through the flower gardens where there are maze-like paths through different coloured plants. Many were so overgrown I had no chance of getting my wheelchair through them, but Miss G was an excellent assistant when it came to getting photographs of flowers out of my reach.

One particular area caught my attention. There was a bush full of these flowers (see above). They were in various stages of bloom and reminded me of dandelion clocks. (that reminds me- I must look into whether a dandelion clock becomes a yellow dandelion flower).

Each flower was protected by the seed ball which then peeled open to further its species, revealing this awesome sight. Seeing the petals curled up like this reminded me of nests, mother animals creating a safe and sheltered environment for their young, scaring off predators or interfering guests (don’t pretend you don’t understand that one). The bold and uninviting looking ‘spikes’ to keep potential danger away until they are ready to fend for themselves and accept visitors not dissimilar to a bitch growling, a snake hissing or a mother ignoring the front door and telephone.

It also made me think of the safety people feel within their own cocoon, be that alone or with friends and/or family. When the shit hits the fan, we all want to retreat to that cocoon of safety where we can count on support and rest to recuperate, gain strength and emerge when we are ready. 

I was brought up to hide the pieces of broken up shit under the legs of the fan, to keep it all inside and always think about what the outside perception would be. The favourite sentences uttered would be “What will people think?” and “Oh, it can’t be that bad really...it always happens to you doesn’t it" in a condescending, disbelieving tone.

I learned very young to not bother trying to seek support within the family home, to keep everything hidden and try my best to just carry on. As I have navigated through a rough and bumpy life i have come to see that is a very unhealthy way of trying to manage problems, and i do not recommend it. It is very difficult to undo years of being told one way of coping though. The one person I could go to sadly passed away 12 years ago now. I have a good friend who is feeling this pain now after suddenly losing her safety net too. There is no age limit on how this can have a devastating effect on us, but asa with everythin in life, it is how we manage to get through and cope with everything that is thown at us that makes us stronger. (I keep telling myself that- maybe one day it will work haha). As a family unit we are alone in the world. We have friends, but no family we can chat to or rely on. We can't call on a mum for support or help, can't pop over for a cup of tea and a natter or ask them to pick the kids up. Having children I think makes that safety net of a wider network more important for us all. Friends become family and we all find our way into support and understanding.

Once this flower has bloomed and gone out into the world, it will be alone, watching others still in their cocoon, others fighting for survival in the same position they are in and being admired by people like me, who probably think way too far into a simple flower blooming in the summer sun.

Mummy Down

I’m screaming but you don’t hear me

Why don’t you listen? 

Look at me- I’m right here

How can you leave me like this? 

Can’t you see I’m hurting?

Assistance needed now, in distress

Or do you hear? See? 

But not care

Walking straight over me, 

The pain of watching you pass

Tears through me, deepening the hurt

I opened my heart to you

How can you just walk by

Oblivious, you’re responsible

Disbelief, dejection, heartbreak

We were tight, bonded

Broken

Humour, wit, openness

Closed off, Blocked

I always had your back,

Always showed up,

Where are you now?

Mummy down

...

Goodbye

Fourteen years, four months and two weeks. That is how long I had the privilege of being mummy to him. 

That time began with difficulties and never really changed all the way through. 

We went through a lot together and had a strong bond, could chat about anything and he knew I had his back when needed. 

The early days when he wouldn't take a bottle, didn't want to be held, didn't sleep. Then walking before a year, climbing out of the cot, into a single bed at nine months because it was safer.

The struggles of getting the double buggy up the steep hill to nursery school every day, then to his first school before we moved to safer ground. I remember the days of being stuck in hail stones with no ca r and a double buggy on that hill then arriving back at the house to a steep driveway and steps to the door, never knowing what might greet us.

The move to safety took a few attempts, but I kept him safe each time and always did my best, with support to get us all away. 

Having to fight the headteacher to get him into the english speaking primary school even though, given the reason we had moved, she was less than enthusiastic. Arguing with the SENCO that I felt he had additional needs but she just said he was naughty. Every day dealing with the racing off on the scooter on the mile walk to school, then being called in for a minute at the end of the days before dealing with the meltdowns every single day. 

I tried every single activity available for him. Some ended when he distracted the leader, others with a fight. Some he was bored and acting dangerously (swimming!) and others just not for him at all.

As he got a little older the bullying began. He would pick one person to be friends with and not cope with others playing with them. He would mistake the bullying for people being his friend and only when they were at ur house or when I could hear did we know what was really going on. Getting the third school to deal with the bullying wasn't easy because the family were huge and the town small. 

Our biggest move of all was down to him. He picked the house and location we went to. We packed the house up together, unpacked together and set our new home up. I found activities and groups before we even moved in, planned to hit the ground running for the children.

The CAMHS appointments when they refused to commit to anthing, sending us round in circles with paperwork. Pushing for meetings higher up the threshold of need, trying to find someone who could see his needs. Noone listening. Even up to children in need level, still the only offer was sport sessions. Sports always ended with trouble. Either he had cheated, lost or someone hadn't followed the rules and he couldn't cope with that.

Going to a private centre for an assessment of his needs. First a private multi disciplinary team to assess for autism, pathological demand avoidance, adhd. Then a private occupational therapist to look for sensory issues.

The diagnoses were a terrible shocl but they made perfect sense too. I worry for him that where he is now, they don't accept the diagnoses at all and blame me for it all. That won't help him.

I found perfect places for him to go- therapeutic activities with lots of physical exercise to burn off some energy and keep him calm. He was excelling at them and we evn found an educational provision that catered to all his needs too. 

Each time I asked social services for help they were useless.

First time. We were sent an early help worker. She came into the house, spoke to us all, looked at everything i had done for him and said I had done her job for her.

Second time. They wanted to put us in early help again but i complained. I shouted and fought for him until we got a children in need meeting with all the relevant people together. Still no help.

Third time. Final time. They said it was a safeguarding issue. I had to get everyone safe. So I had to separate him from those he had hurt and scared. By the time the social worker arrived it was too late. She twisted everything, said he was somewhere safe now and that was that. He should stay there.

We had two more chances to get the help we needed for him. We could get him into temporary foster care if the people he was stying with said he couldn't stay there- but they wouldn't say that. Then the lawst slither of hope went when he told me he didn't want to come home anymore.

Now he doesn't want to visit, doesn't answer my calls or messages. There is no relationship there at all.

I cannot put into words how painful it is. It is a physical pain. I am constntly fighting back tears. 

There have been daily issues with ignorant messages from the biological father (please note here that he didn't go to live with him- unbelievable). Name calling, game playing, mind games. 

Emails about his EHCP which I had fought for over the last nine months. It is too late now.

Today his boxes of belongings were collected by the courier. 

Fourteen years, four months and two weeks all inside a handful of boxes.

My heart is breaking and I don't see how this will ever be ok.

The end 

Do No Harm

We have been on many, many walks through the local tracks, pathways, parks and valleys over the past few months and I have spent many an hour looking through the nettles for ladybirds. No luck.

Around two weeks ago we found one ladybird that was lying, deceased, on the pavement opposite our local park, but other than that not a peep.

Then, yesterday we went for another walk and I spotted three ladybirds near each other on the nettles. They looked unusual, different to the ladybirds we are used to seeing here. Instead of the pillar box red colouring, this was more orange and the dots were more numerous.

I had heard of an invasive species of ladybird some time ago but not noticed any differences until this year. The invasive species is overtaking our native ladybirds by eating their eggs, larvae and their food and then laying many many eggs of their own instead. 

On the same walk we also came across this unusual bug. At first glance we thought it was a spider, but with only six legs it clearly falls into the insect family rather than the arachnids. 

Next thought was a type of caterpillar, but it wasn’t long enough for that and the legs didn’t fit either. So I took a photo and decided to research it at home. 

It turns out to be a larva of one of the harlequin ladybirds. 

On our walk we saw three of the ladybirds and two of these larvae. Bearing in mind we were walking a very energetic staffie cross and therefore had little time to stand and explore the nettles, that is quite a find. It explains the lack of native ladybirds we had noticed.

These bugs are ferocious. They are harmless to us- the worst they could do is stain your clothes yellow- but they are cannibals, eating their own kind, pretend to be native ladybirds by copying their colouring and are difficult to control as their needs are so similar to those of our decreasing native ladybirds. Just look at these photos!

In reading up about these creatures, I found a passage that describes them as a ‘halloween bug’ because around that time of year they can be found in large numbers and have been known to invade people’s houses! 

We have already had a home invasion of ants, flies keep coming in through the doors and windows and doing their geometry in the middle of each room. The last thing we need on top of that is an invasion of harlequin ladybirds! (not to mention the coronavirus this year too).

Heed this warning.

You might think that you are doing right by meddling, or that you have done no harm but this proves otherwise. You can't go into ana existing family and introduce a devastating change without fallout, pain, loss and heartache one one side and an earth shattering change on the other. Who knows what the long term effects will be.

#family #socialservices #disability #ladybirds #harlequin #invasive #change #pain #grief #devastation #bugs #nature #larvae #ladybug #insects #halloweenbug #invasion #ASD #PDA #pathologicaldemandavoidance #SPD #sensoryprocessingdisorder #autism #autismawareness #chronicillness #invisibleillness #hiddendisability #missyou

….

One way systems

We were half expecting someone to turn up today to collect Mr J's belongings and clothing, but with communication poor and mind games and power trips taking the place of any common sense 🙄we couldn't be certain. Just in case we decided to go out for the afternoon- in the rain.☔

It definately did not feel like summer today- more like autumnal weather but with the beauty of summer throughout our visit.

With the changes to days out due to the coronavirus and safe distancing situation, we looked into the new rules and guidance for our visit. We booked in advance, knew the toilets would be open (yay!), there was a one way system around the lake and some areas would be open around the children's play area (but we had no intention of going there anyway). With our dietary needs, we took our own picnic and hot drinks along with us, found a couple of seats under a tree and sat down on the inside of coats.

 

There were lots of people out on the lake rowing, plenty of couples enjoying the view with a hot drink and snack from the cafe (where the barrier to enter was too narrow for a wheelchair) and extra strength mosquitoes were out too. Hubby got bitten several times whilst in the cafe buying some crisps and Miss G used the windmill of sleeves approach to deter them from getting too close to her.

We saw black swans (Miss G noticed the inside of their wings is white), a moorhen chick, goats (that looked like they were floating where we had our picnic), fairies that I'm sure weren't all there before and enjoyed the flowers and wilder feel than usual.

As for the one way system, there were a few yellow arrows on the floor now and then and signposts placed at most of the junctions. At the start you had the choice of heading left .⬅ around the lake or right ➡ to the Italian gardens. Walking around a lake in one direction is simple enough you would think (never assume) but at the end, when the arrows vanish and you are faced with a myriad of metal barriers between you and the toilets, 🔀a sign pointing away from the toilets telling you to go that way, but the path infront of you leads to the disabled toilet with no signage or arrows it gets more complicated. 

We got told by a man, who's job seemed to be to sit outside the toilet block telling people they had to go in the other way and only one person could enter the toilet at a time (not possible when you are two disabled people and a carer), that we were lucky 🚻 there was no queue so we could access the toilet - surely putting a no entry sign on the direct route to the toilet would save a wage?

So- if you plan on visiting, do not head down the level, paved entry direct oto the disabled toilet, instead you must follow the sign to the toilets that points in the opposite direction and down a make shift path of bark chippings (I'm sure someone thought it was a good idea at some point). But at least they are open! Plus- the ice cream kiosk sells vegan ice cream and sorbet. Fabulous!

There were a lot of metal railings alongside the main restaurant which looked like they ight be to separate people queuing for tables from people walking down the path, but, once we got to the other end there were arrows there directing people either side of the railings depending which direction they were walking. It would have been useful to know that at the top end too really. Never mind- we continued on.

The fountains were on, the fairy 👸was still trying to blow the seeds off the dandelion clock and the flowers were all in full bloom in the Italian gardens as we mader our way through as many colours as possible towards the temporary exit.

It seemed that each time we put our umbrellas up, the rain would ease off, then we would fold them up which encouraged the clouds to release more water. Thanksully we had our inside out umvbrellas with us so folding them up didn't cause us to get soaked by wet umbrellas. I was sceptical (as ever) when I bought them but they really are worth the money. I love that from the outside they just look black, but from the inside we get to see the gorgeous patterns we chose. Plus the handle is so easy for me to hold.

Our walk took us over board walks, saw Miss G get her shoe stuck in a tree👟, under fairy homes and past many structures.

There were three stag beetles tucked away just off one path, a kingfisher hiding by the stream, otters, an underwhelming dragon (according to Miss G), mushrooms, rams and so many more.

We saw herons fly, sitting on the waterfall and in a tree. The wildflowers along the start of the walk were beautiful- a rainbow 🌈 of colour followed by a mostly sunny yellow display.

One of the last finds was a shrub with flowers that bloom from a dandelion clock-type seed ball. They were clearly visible in every stage of bloom and were mesmerising.

It has been a long time since we visited, and now we know the secret rules of the one way systems I am sure we will revisit soon. There is nothing quite like spending time outdoors👨‍👩‍👧 to clear your head and change your focus.

Sweet Dreams

Right now, I have three sticky pads on my chest connected to an ECG monitor that will be taking measurements for 24 hours.

I have been having palpitations again for months but nothing ever shows up on am ECG

 Typically, since having this machine stuck on this morning I haven't felt any. They don't seem to have any pattern but I quite often get woken up by them.

I am on a lot of medications to make it bearable for me to move at all, each with side effects. One of them is vivid dreams. I have always had odd dreams and often woken confused by them, but now they also seem ultra realistic and I wake up not sure where I am, when it is, who is there or what is going on. It isn't unusual for me to have forgotten things like my husbands name, where we live or what time of day it is until I have come round more.

I also seem to get heart palpitations when lying in bed

 Maybe it's because I am not doing or thinking of anything else so I notice them more, but my heart beats so fast at times and feels like it is trying to escape from my body.

I don't drink caffeine, have little alcohol, many days I don't have any at all, drink plenty of liquids and try my best with the risk factors for palpitations and yet they come anyway.

I also have memory foam style feel and legs. They are swollen permanently but swell more each day, gradually reducing overnight but never back to normal. Everything leaves dents in my legs and feet, I can press a dent and it stays for over two minutes. No doctors are interested in it so I guess it's OK. It doesn't seem like it should be OK but..... That's my experience pretty much with doctors.

So, tonight I will try my best to sleep despite life, despite the grief and upset that presently shadows my thoughts, with these sticky lumpy dots on and wires attached, without putting any wires out.

Wish me luck and I wish you a good night and a fun and safe weekend

Don't open the burger box!!- going for a wee during a pandemic

After I read this article on inews it hit a nerve with me because we have had our fair share of incidences over the last few weeks with the lack of open toilets, but no-one seems to be talking about it.

I wish the prime minister or health secretary had experience of bladder issues or chronic illnesses. Honestly, during lockdown this wasn't a problem- the only issue was if someone else in the family was using the wetroom instead of going upstairs to the bathroom. As soon as we have been able to go out for more than one short period of exercise a day, this part of life has been almost impossible. 

In our car we carry all sorts of things between us all, but one more recent addition is a portable toilet. Being a powerchair, in the back of a converted VW there isn't much privacy. I am surrounded by windows on all four sides. The only way we have worked out is to try and park somewhere quiet, get a blanket to cover me up, wriggle to the front of my powerchair as much as possible and hope for the best. It is far from a quick fix or a fail proof method. It would be far easier and simpler if I could use my RADAR key to access the padlocked disabled toilets when we are out and about.

I understand that everyone needs to be extra vigilant with the pandemic, but how is making people either wet themselves or urinate in people's gardens/on beaches/in bushes any better for people's health than having handwashing facilities and ensuring face coverings are always worn at public conveniences? The number of people who don't wash their hands after using the lav anyway is disgusting, so I don't see that changing. It means I carry around my own hand sanitiser, tissues, wipes and soap sheets as a matter of course. I have a face covering, as do all my family, plus spare individual wrapped ones in the car and in my wheelchair bag. I am not aware of being able to catch the coronavirus through a toilet seat, so don't see the issue.

As it is, with two of us in the family having bladder issues and bowel issues, any trips outside are always planned to include regular and failsafe toilet breaks. At the moment this is impossible. When we have needed the toilets they have been locked with padlocks. We have seen some people climbing over barriers in shops to use the toilets, people moving barriers out of the way to take their small children to the toilet- unfortunately I can't be that sneaky in a large powerchair, it tends to stand out a bit. 

At home, I have to make sure there is someone available to help me when I need a wee, so that is sometimes tricky, but having the public toilets open again across the country will open up our lives again and mean we can travel out of home's reach.

When a toilet is flushed without a lid, droplets are flung out of the toilet bowl all around the stall. This happens all the time- which is why lids are invented. People so often don't use the lids, and disabled toilets often don't have them anyway. The toilet water being flung around wouldn't matter any more than it usually does as long as people wear face coverings and wash their hands surely? After all, we can now go to the pub, to the cinema, for a meal out, shopping, get married and more- all differently to prior to covid19. In Ireland they have even published guidance on how to use a toilet now!

This article goes on to talk about the litter being left by the public visiting beaches and parks. Just this afternoon we visited our local park and saw the usual amounts of litter left around the place there too. There are always the tell tale signs of the darker side of the park where groups of older teens and men (not being sexist here, it is men around here) gather in groups for a smoke and drink, presumably unable to find the many bins on their way home. There is always broken glass somewhere there too to accompany the beer bottles, cans, bread bags and other general waste floating in the lake. It seems that people with this same mindset are also visiting the beaches photographed for this article (and many others like it). I have never understood how anyone can litter. If I drop anything at all I always go to pick it up, or ask someone to help me pick it up. I would never be able to just get up and walk away from a collection of bottles, wrappers and packets we had used. 

I remember seeing my mother in law drop some litter on the floor when my husband and I hadn't been together very long. I pointed it out to her and she just left it. I mentioned it to my husband who told her to pick it up. I felt awful, like the litter police or something. 🙈

Our children are awful at home for leaving half finished bottles of drink around but when we are out and about they know to use the bins or their pockets and (being gloriously literal and autistically honest) are keen to loudly point out anyone who they see drop litter.🌈

It says there was faeces in food takeaway containers - how would you even do that on a busy beach?! (I do not want answers). We have all been there with children, desperate for a wee you hold them up at the side of the road for a wee so they don't wet themselves, but this is so different. Yuck.

(All images from pixababy free clipart)

If you were a girl who dated a boy and then turned into a boy, would you be gay?.....

Random questions...If you were a girl who dated a boy and then turned into a boy, would you be gay?

We have just eaten our free from sausages as hot dogs for lunch with delicious fried onions and sauce and everyone is relaxing around the house. Miss G is having a bad day and has gone to watch a DVD upstairs in her room, Miss A is watching YouTube videos on the sofa, I am on the computer (obviously) and hubby is finishing up in the kitchen then going to chill out for a bit too. Then, out of the blue, comes the above question.

I have been looking up information about the LGBTQIA community, trying to better educate myself on the right terms and acronyms, but I am still not entirely sure my answer is correct. I think that it would mean that you were trans and gay. (Please correct me if I am wrong...I want to get it right). 

We always have open discussions in our home, give truthful answers appropriate to the person's age, but it doesn't mean I don't get surprised now and then by the questions. Miss A is 7 years old and asking questions like that already. 

The children have been discussing sexuality a lot recently with friends, trying to explore where they each fit and how they feel. We just keep an ear out and make sure they are safe in their discussions and help them with any questions along the way. Don't misunderstand, they discuss other things too, like the killing of George Floyd and Black Lives matter, Boris Johnson and how little sense he makes with the lockdown rules, Pokémon and other topics too, but most of the questions and parental learning is based around their sexuality and gender discussions.

I can't imagine ever being able to discuss anything like that with my parents growing up. They were the type who left leaflets in strategic places and discussion was never open. If I had been gay or bi they would have hit the proverbial roof. Their attitudes to anything and everything different to them made me determined to be able to have open communication with my children and bring them up completely differently to my own upbringing. It was all about other people's perceptions, not being different or standing out, what other people would say or think about them. With children with additional needs I honestly think living like that would be impossible anyway, but we have been out with facepaint on (including on me), wellies and fancy dress together, random clothing that no other person would wear together and it doesn't matter. The children know that it doesn't matter what anyone else thinks or says. As long as they are happy, safe and comfortable then it is all good.

(image from dreamstime.com free clipart search)

All mixed up

This blog is supposed to be about living with multiple disabilities in the family, so that includes all of us in our household (everything seems to be about households lately). Therefore, it makes perfect sense for me to include here my own part of what has been going on in our household recently. 

I am still coming to terms with the health issues I have myself. There seem to be new symptoms popping up, unwelcomed, frequently. The GP keeps repeating tests and spiel that I have already been through. I know that is what will happen at the GP so I always put it off as long as I can, then go through almost desperation, only to be disappointed that they repeat the above over and over. Then I am left wondering why I bothered them in the first place.

Over the last couple of months I have been to A&E twice for myself, both times regarding the same issues and symptoms. Both times I had the same procedures carried out, the same tests, the same spiel and was sent home to go through it all again at home not wanting to waste anyone's time by going to the hospital again (not to mention that the hospital has been the last place I have wanted to be near during this pandemic). 

I have also been to the GP twice over the same time period, for the same symptoms, had the same tests and spiel and been sent home to go through it all again without bothering anyone.

If you are reading this and are someone without chronic illness perhaps that last sentence seems nonsensical to you, but trust me, there are many chronic illnesses that cause scary symptoms and we put up with a lot before we approach medical professionals because we (people with chronic illnesses) know, from experience, that they do nothing.

I have had so many repeated blood tests (telling the phlebotomist every time that I need a butterfly needle using because my veins are awful....they never listen), ECGs carried out, chest x-rays and tests of various bodily functions over the years that hospital doctors always comment on the size of my medical notes for someone of my age. If only they would listen to me every time I have to see one of them, they would save a lot of NHS money and time. But they never do. 

I took this copy of the meme from Bing images search, but it is frequently doing the rounds on social media platforms.

Doctors (generally speaking....I have met one or two good ones along the way) just don't listen. They hear one symptom, have a thought and run with it, totally ignoring you from then on.

Example:

Just yesterday I contacted my GP after having heart palpitations, chest pains, numbness in three digits, foot and ankle swelling and awful acid reflux. She phoned me back (everything has to go through telephone triage during the pandemic), heard that I have heart palpitations and told me the acid was a separate issue to be dealt with separately. She told me I needed to be seen but to go to A&E if I felt in danger. I explained to her I had been there twice recently with the same issue, at which point she looked at my notes for the first time (!!) and saw that was true, also that I had been to the GP about it before too and gave me an appointment time later in the afternoon.

When I got there, it was the healthcare assistant who I saw first. She did an ECG (again), checked my temperature, blood pressure and pulse whilst I had chance to read my printed out notes summary. I saw that someone had scrawled on there that I needed an ECG (again), h-pylori test (again) and to be referred for an endoscopy (the second referral for this, but i haven't had one, just the joys of a sigmoidoscopy) and a 24 hour ECG (again, i was supposed to have been referred for this in February but when it came round the pandemic had begun and so everything was off.

I explained I had already had a H-pylori test and it was negative, but, as usual, because it wasn't this specific GP who had ordered the tests, I had to have them again. So, I was told to wait for the results (again) and then to back to her again (really?) so she could refer me for an endoscopy depending on the results (again). The ECG was normal (again), so I was told that an ECG will often be normal at times when the main symptoms aren't occurring (again) and that a 24hour ECG would be better. This left me wondering about the sporadic symptoms of chest pain and palpitations with numbness- what if they don't occur during that specific 24 hour period? I don't get them everyday. 

She had also written down that I used to take a medication for the palpitations (I actually still take it, along with two other medications for my heart) and that I take medication for acid reflux (actually, I am on the maximum dose and still getting significant symptoms which the previous two GPs have told me needs an endoscopy, but you can't ever get the same GP twice). She was not interested in the numbness, swelling or dizziness. My heart rate shoots up to over 120bpm when i am doing nothing sometimes and it feels like my heart is trying to escape my body. During the ECG I saw it was at 112bpm, but the GP wasn't interested at all. So, I wasted over an hour there with no difference.

I have had so many tests and procedures carried out that I am extremely cynical of the medical profession. They find something, tell you the name, sometimes give you medication (depending on what they find) and that is that. It was the same when my children were diagnosed with autism. The professionals assessed them, agreed with what we had said all along, gave it a name (autism) and that was that. Good luck and off you go. I don't think it is enough. 

Aswell as these glorious visits to A&E (following the green lines not the red), the GP (wearing the face mask), we have been dealing with a lot more...

(|I get some funny looks, but being in a wheelchair I am used to that)

....leaving an abusive relationship several years ago has caused us financial hardship as a family for a long time. We have never been able to settle properly and feel safe anywhere because there is always the possibility he could find us. He has access to NHS records (yes, I know they aren't meant to access them but you aren't meant to do a lot of things he did) and that terrifies me. I have asked for them to be locked but because things didn't go to court the NHS can't do that. |it is extremely frustrating. If we didn't have any health issues I wouldn't register with a GP or dentist, but we can't do that unfortunately. 

Anyway, since leaving him we have had to move five times. That is five houses that needed decorating, five houses that needed flooring, five houses where our furniture didn't fit so we had to source different furniture, five lots of new insurance, five removal companies, five gardens that needed childproofing and dog proofing, five gardens that needed securing from the outside world, five times we have had to pay the remainder on our TV bills and so on. I am sure you get the picture. We have also had to change our car (vehicle...we had a van for a while) twice before getting a Motability car, needed to pay privately for autism diagnoses because the type of autism two of our children have is not diagnosed here on the NHS, had to pay privately for MRI scans and other medical scans because the NHS doctors don't do them, needed to buy mobility aids as my condition deteriorated quickly (they are not cheap- honestly, you put the word autism or disability in anything and they add zeros to the prices). Being on benefits is tough enough without having to go through all of that. Having autism is tough enough without having to move house and everything changing so often. 

We needed to use a foodbank one day and we saw a desk set up in the corner, run by a money advice charity. We spoke to the advisor and were advised the best way forward for our situation. We have taken her advice and are waiting to hear back (everything is slow at the moment because lots of people are working from home).

As well as this we have been dealing with violence and anger from our son for the last seven or so years. He has always struggled with anger but as he has aged and become stronger it has become more difficult for us to handle. We got pushed beyond our limits last month and he moved out. We tried to get social services to help us being him back home, but they wouldn't. They twist every word you say and try to get you off their books as soon as possible, costing them as little as possible.

Scenario 1. Continue to put up with the violence, aggression and anger at home with two younger siblings with additional needs terrified and my husband being physically assaulted.

Scenario 2. Make the house safe by taking my son to his biological father's side of his family as an emergency measure whilst waiting for social services to step in and support his return home.

Scenario 1 would be us putting the two siblings at risk and social services would step in. It would also mean the stress and threats would continue. We have gone this way for years, hoping for help from all the services I have approached, but all they could offer was two hours now and then at a sports activity he hated and got into trouble at. 

Scenario 2. The home is instantly safe, he is safe, social services are aware.

This time we took scenario 2. Because he was with a member of family (it could literally be anyone who is family, no matter how distantly related, or even a friend) social services no longer see a need for them to step in. They can't put him into temporary foster care because he is safe with that member of the family (300miles away) and can't work with us to bring him home safely unless we take him back into the home now. 

Obviously there is no chance we could just pick him up and bring him home like nothing had happened. I had contacted CAMHS, spoken with a team who support families to stay together and could work with him in foster care locally, had got towards the end of the process for him getting into a perfect special school for his needs, but his biological father's parents told social services they wouldn't allow him to go into care. The end.

I haven't seen him since the beginning of last month. He no longer answers my messages or calls and his father has told the social worker (who no longer has anything to do with us) all contact has to go through him, but he doesn't answer my texts or calls either. We have boxed up his things, but they won't come and collect them. His father was quick to get onto child maintenance though and tell them the date he left here! My instant reaction when they said they wouldn't allow him to go into care was that it was financially beneficial to them to take him in. They have been very very quick to sort all that out.

The part that sits awkwardly with me, other than having to accept I basically now only have two children instead of three, is that he isn't living with his father. The 'reason' I am given is that his father lives with his girlfriend....and?.. I find it extremely weird that he hasn't ever been to their house either. To be totally honest it feels as if he has died. I know we did the right thing and I fought as much as I could for him. I know we did the right thing for everyone and the home is much calmer now for it, but I am still his mother and it hurts that he won't even have contact with me.

On top of all of that I am struggling quietly with feeling down. I have had depression before, more than once and know what it is. I am trying to fight it off, but there seems to be so many things going on at the same time (but there always are in our lives) that there is no escape. It isn't to do with the pandemic- I have found it a positive experience to have my family home more and not be home alone so often. It does mean that i am cancelling care calls more often though because I just don't want a stranger coming in and going through the motions. I would rather stay in bed or stay up late in my clothes and wheelchair. I got in trouble before with my "social worker" so am waiting for this to happen again. But...I am an adult. Surely just because I need the help of carers for personal care morning and evening doesn't mean I don't have the right to cancel them time to time? I went to the GP earlier this year about feeling depressed and suicidal. She told me she couldn't put me on any antidepressants because one of my painkillers is also an anti depressant so it would mean changing that slowly. She gave me a phone number to ring and that was that. So I haven't bothered since. I do email the Samaritans now and then when things get too much. I am useless on the phone and find texting or emails much better. 

So yes, the country has been in lockdown, people have been stressed about being home, being on furlough, not being able to go to the pub or cinema, having to only have one exercise a day, now expanding their household bubble to include another and it has been awful. It truly has tested everyone. But there have been beauties along the way- just look up the positive effects on nature, the smog levels across the world, kindness shown by people to others and everyone noticing nature more. The pandemic cannot be blamed for everything. Life goes on and as the saying goes "this too shall pass". When it does, all the normal life issues will be there, waiting for you.

Images from Bing search for free clipart or personal albums

If you need to contact the Samaritans by email:  jo@samaritans.org