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

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