Autumn 2020

With the Tier 2 of covid-19 in force in our local area, Tier 3 all around, we are sticking local as much as we can. We have been staying in more again, keeping strictly to the rule of six, including only our support bubble and childcare bubble. 

Now we have a better handle on the restrictions than when we had during the first peak in the UK, we are able to cater for our children’s needs better, despite the restrictions in place. (But when the government decide to chenge things with only a day or two's notice, that seriously does not help).

It is Halloween this weekend. Our girls love getting dressed up and going trick or treating every year. This year, although it is not banned, I don’t feel it is a good or sensible idea to be going to other people’s doors, taking treats from them and then potentially taking the virus door to door.

I have prepared a picture treasure hunt for the girls to do, a pumpkin hunt and prize bags for them all. On top of that, there are some halloween games for them to play too, with prizes again. I plan on putting Hotel transylvania on the TV whilst they have waffles and/or pancakes with alien slime sauce (Home Bargains), ‘Witches’ blood’ (fruit jam), ‘Sticky zombie pus’ (syrup) and ‘Bat Juice’ (chocolate spread). 

I was thinking of repeating the food from a few years ago. We had mashed potato with sausages stood up in it. I dyed the potato blue and cut a piece of sausage skin off one end, put a piece of fried onion there and called the dish ‘Witches’ fingers in alien mash’. It didn’t go down very well at all. So we might just stick to jacket potatoes and chipolatas this time, no colouring.

I want the girls to have the opportunity to go outside in their costumes, although they already have been to a Halloween event and shown off their costumes…..it would be nice for them if their other friends could see them. So, if the weather forecast improves i might try and hide (ask Hubby to hide…) some of the pumpkins outside and around the street a bit (accepting that they may well get taken by other little Halloween creatures).

Away from Halloween, we have also been looking for fireworks. They have been going off around here for a couple of weeks already. Our dogs, cats and daughters aren’t keen. We have lavender for the animals, to help them remain calmer, but for our daughters, we have been looking for the ideal firework package.

I am hoping it will still be available, but it is in Aldi. They have a package which only contains quieter (sadly not silent) ground based fireworks and a catherine wheel. These are far less scary for our children and can be easily watched from behind the house windows if needed.

Aside from these annual dates, Hubby and i have been trying to keep our minds busy by watching TV together. I have found Gogglebox t be useful for finding new programmes recently. I have watched The Handmaid’s tale on Amazon prime video. I can’t believe it was written in 1985. It certainly made me think abut things. I have had an interesting and difficult relationship with christianity ue to my adopted parents, but a lot of what was portrayed in these episodes certainly rang true from my own past experiences. Obviously not to the same extremes, but the division is felt, the shame and indignation also present. I think everyone should watch it if they have, or have had, any relationship with the church. People with money, or very kind friends, are already able to use a surrogate. Nothing to the lengths shown in this programme or described in the original novel.

Through no desired link, we have also watched A Brave New World. I remember having to study this in high school and hating it. Watching the series makes it far more accessible. 

Both of these views of the possible future for mankind, by different authors, are concerning. I would hope that neither is the truth, but who knows. There are certainly some strange things going on already.

Our current watch is Riviera. It is making me wish we were on holiday in the south of France. I long for the heat, the sound of the cicadas, swimming in the pools etc. But staying safe has to take precedence this year.

Our children all have plans for New years’ Eve, to say goodbye to this year. Hopefully next year will be better. Or perhaps we will all have become conditioned by then.

Halloween Crazy

 Well.....since I booked tickets for us to go to a Halloween Scarefest (family friendly), we have all been on a countdown to Halloween.

We took our friend (in our childcare bubble) to the National Forest Adventure Farm for Spudfest this year. We all enjoyed it so much, we booked for Halloween the next day. It is such a great day out for families, and for those with additional needs there is plenty of space, huge choice of activities and something for everyone. Even now, with the Covid-19 restrictions in place, numbers are limited, staff are cleaning constantly, there is handgel all around to compliment the soap and water sinks available too. We felt safe there, and that says a lot.

I feel really sorry for the children who love halloween this year though. They can't go trick or treating, can't have all their friends over and so I'm not sure what Halloween will be like for everyone in 2020.

Our house was decorated inside as soon as the tickets were booked (October 1st). The girls have put up 3D faces on the walls, hanging pumpkins, halloween bunting and other decorations throughout the house. I have bought patterned paper to make paper chains, but have put it somewhere safe- a lethal and silly mistake on my part.

There is even a skeleton who's foot gets stuck in the cutlery draw repeatedly (just as well it can't feel any more!).

The scarefest was yesterday. With coronavirus, bookings were for one of the two daily sessions. The girls wanted to have their faces painted and to go in halloween costumes. Thankfully, they both agreed to wear jumpers and coats to stay warm too. 

It took me over an hour to paint their faces, but I do think they both looked good.

 I booked the afternoon session because we all have trouble with sleeping lately. It meant we had four hours (the same as if we had got there for the morning session) to explore the mummy maize maze, enter the haunted mirror maze house, pick pumpkins from the field (catching a lift on the tractor), feed the farm animals, enter the musical maze, bounce on  the giant pillow, see the broomstick training, go on the funfair rides and have free time to explore whilst hubby and I tried to havea hot drink together (once we were certain they all knew their way around and where we were).

We had chips for lunch with hot drinks all round- we needed them to warm up from the icy wind. 

There was a demon wandering about, handing out medals to children who were scarily dressed. Since he was mainly targerting the younger children, ours were getting upset. I hoped that explaining their additional needs to him would help. He was great- he played a little game with them and let them win a medal each. Phew!

As usual, their goats were adorable. The guinea pigs got a fuss, cows, pigs and goats were fed and cuddled, then we returned outside. 

I knew, as soon as I saw the maize maze, that I would be the one to get lost in there. Miss A got a stitch so was walking with me (on speed 2) with hubby too. I managed a couple of circles inside the maze, lost our friend and Miss G, entered a second field through an open gate, where the maze continued, and continued to be lost until I saw our friend K coming to rescue us and reunite us all again.

Driving over the large lumps of stones and gravel has left my shoulders and back painful today- so much so that I didn't want to go to sleep last night. I figured it might not hurt so much if  I didn't have to wake up. That logic didn't work though- my medication and a long day combined to help me sleep by 3.30am.

Today they are waiting for the paint on their pumpkins to dry out so they can add a second layer and paint faces or patterns on them. We have two very large pumpkins on our dining table. One pink and one white right now. Miss G chose a smaller, green pumpkin and has decided not to paint hers.

I have promised to buy some pumpkins to make soup with, and we are all going pumpkin picking again on thursday too. Hopefully those pumpkins will last until halloween.

We are having a Halloween party here, within our covid bubble. I have got a sort of treasure hunt ready, my friend has some games and I need to find some more activities they can get up to aswell.  Wish us luck 😉

(and the countdown has begun to the Christmas event at the farm too #NFAF )

It's been a while...

Over the last couple of weeks it feels as if time has been crawling slowly towards the end of September. As an individual, I have started to try and recover from the events of this year (and I don't include covid-19 in that).I am trying my best to not try and contact Mr J any more. Every time I ring and he doesn't answer, it cuts a little more into my heart. The messages that aren't even read, texts unanswered and, despite the help of all mutual contacts (except his father's family) him still ignoring me, all hurt. I am certain he knows that, somewhere deep inside him. I have gone through phases of thinking with it all. At first I just expected him to answer. Then, when it became clear that was not going to happen easily, I thought maybe, if I kept ringing it would annoy him enough to answer, even if just to shout at me. That didn't work either. So I gave up trying. But then, the one time my phone was in another room from me, on charge, I missed a call from him. I took that as a sign he might be open to speaking to me, so tried ringing again. It sent me right back to the beginning of the process. 

More recently, I have been trying my hardest to leave him be. To not try any more to contact him. I know he has PDA, I know answering the calls and texts is a demand. I understand that means he will try to avoid it. But, it feels so wrong too.

To try and make myself feel a little better I have had my hair dyed a couple of times. 

(photo of me having my newly dyed pink and blue hair dried)

My husband has been dying it for me, using semi permanent hair dye by Crazy Color. It it so easy to use and I am not allergic to it (yes, I was amazed too).

Miss A, Miss G and their friend have all had their hair dyed too- I spent one day dying their hair, one after the other. We did try Manic Panic dye, but it didn't last long in their hair and seemed to leak onto their skin, but we didn't have that problem before. I have stopped making myself feel bad for the weight gain on all these medications and bought a capsule wardrobe of clothes that are the right size for me and that I actually like.

I have also been trying to get out and about to new, accessible places locally, with the excuse of the dogs needing a walk. 

(photo taken over the stone wall of a reservoir, looking across the water to the other side, surrounded with trees)

We were able to walk all the way around this reservoir. There was also a path that lead off the main route, towards a waterfall. It was pretty bumpy, but I managed to get almost to the end...so close, but not to the waterfall.

With the weather changing, my hayfever has kicked in now, making outdoor trips more difficult and painful. Just this afternoon I ventured out into the back garden to check on our plants and flowers. Within an hour of returning inside my eye has been streaming, itching and hurting.  But, we do have these out there...

(three photos of flowers from my garden. One is a large purple flower in full bloom, then french lavender and finally a pink and yellow rose)

and our mystery fruit bush is growing well, so it might bear fruit next season, as might our strawberries and pineberries. 

I have excavated a cavemand from a plaster block, painted an abstract painting for our wall, cleaned what I can, coloured in another two colouring books and tried reading as much as I can, but Ican't concentrate enough.

Sleep is still eluding me. I was still awake at 4am today. But I am still going.

This afternoon I discovered a new song called Who I Am, by an artist called Roma. Apparently she donates all her income from singing to charity. 

Tomorrow is my birthday. Nine days ago would have been my Grandma's birthday, and inbetween the two are the birthdays of my inlaws. Miss A is so excited about my birthday and keeps asking if I am too. On goes the mummy face with the smile, nod and reassurance that, of course I am. But really? I am looking forward to a meal out together with no drama. I am looking forward to a day of knowing, for certain, without having to stop and think about it or work it out, how old I am. I am also looking forward to seeing what cake she chose for me :)

But, it will be a weird birthday without Mr J here. 

The best bit about my birthday?- it signifies exactly 3 months until Christmas day haha

🦋🦋🦋

Cinema during covid

And we're off. Me in the boot, Miss G, friend 1 and Miss A in the middle and then friend 2 up front with Hubby.

All day I have been trying to rest my body and keep my mind distracted. With five girls in the house overnight and here this morning it hasn't been easy. They are lovely girls and all get on with things between themselves, pausing for food and drinks.

We have two bedrooms with two in each and the chill out room had one in too.

I couldn't sleep last night but it eventually did go quiet upstairs around 3.30am. It was still all quiet at 4.45am, 6am and then they were all up for breakfast before I finally gave up on any sleep at 10am. Apparently they were hoping for pancakes but sadly we didn't have everything needed for that today.

I have been practicing mindfulness (load of rubbish I think... It doesn't help me at the moment anyway), keeping my mind still by colouring in a book full of positive quotations and also began my Mums coffee time journal from Funschooling, but got stuck after a couple of pages.

I did speak to the mental health access team today too. I had a phone call and had already decided it wasn't worth hiding anything because I know I need some help. It turns out they are just a signposting service. So my GP referred me to them for them to refer me to a secondary level mental health team.

Twice now people have said that they don't understand why healthy minds wouldn't see me. I have explained twice but get the feeling they aren't hearing me.

The wait for this next place is around six weeks apparently, but if I need to talk I can call the access team. She assured me it would have nothing to do with social services, it is just about getting me help.

Other than that, I spent some time trying to get gold, glittery, sequinned slime out of friend 1's blanket and toy moses basket with frills. Every now and then I had to stop and remind myself it was just slime, not the vomit it resembled. 

Thankfully I managed to pick a lot of it off then use a soft toothbrush with a mix of white vinegar and warm water to get the rest off.

So now we are on our way to a drive in cinema to watch a family friendly film I have never seen before. 

On arrival there were movie quotes to keep us entertained as we were guided to our parking spot. 

A quick scan of the QR code and we could order food and drinks to be delivered to the car. Brilliant idea. 

Whilst the children all ate their McDonald's, we ate vegan, gluten free pizza and steak with chips. Delicious. 

All four girls ran off their energy veforw the start of the movie, took a few photos and then settled back in the car, just as the storm arrived. 

The film was really good. Friend 1 slept most of the way through it, friend 2 tried her best to sleep and just managed it at the end of the movie. It was almost as if we were in a 4D film with the storm, rain and on screen storm over the sea. It was a truly immersove experience. I was fortunate to find the same film available on one of the movie apps I have so was able to watch it along with the radio sound from the drive in

Now we are on our way home. Driving through the estate of the country home where it was set, carefully watching out for the free roaming sheep along the way. Sadly the boards on the exit aren't as entertaining as they were on the entrance, but Miss A keeps asking at each one regardless.

We have already booked our next drive in here and I can't wait. 

Caterpillar & Cloud Spotting.

Recently, we all went for a walk with our dog Poppy. My reasons for going out were for fresh air, a change of scenery and to take photographs of interesting finds.

Along our walk we came across many interesting plants from purple grasses to the dying thistles. We were also fortunate enough to spot a few insects in front of my wheels. I wasn’t quick enough to capture them all, but here are a few photos from the walk we had that sparked my mind off.

We have seen a lot of these caterpillars over the years. With loving horses, there is inevitably a lot of ragwort to be moved out. The ragwort seems to be their favourite place. I had never thought about what they metamorphosed into before now. It turns out they are the cinnabar moth caterpillar. On our first visit to this same area, Miss A spotted a cinnabar moth hiding from the rain.

Lots of information can be found about their habitat, and the moth they become on the Wildlife trust website.

A little further along the path I was brought to a stop again. At first I had thought there was a twig on the path, but then it moved. As I got closer, I could clearly see it was a caterpillar wiggling its way across the path to safety. It was massive compared to the cinnabar caterpillar, and it turns out it is an elephant hawk moth caterpillar. I have never seen one of these moths, but they look very pretty in the photos here.

As we continued on, we reached the small waterfall area I had wanted to show the children. When I was last there it had been a sunny, warm day and there were children playing in the water. This was not a day to do that, but it was still beautiful.

The path is a circular walk around a mound with a viewing point on the peak. I have ventured up there once, but will not do so again. The paths are not made for a wheelchair, but the view from up there included this area with the waterfall, and the fishing lake it flows down to. This point is around a quarter of the walk. Continuing from there, slightly uphill the path continued with trees on each side. On the left of the path were lower plants with higher trees to our right. I was so surprised to see this sight, I called everyone over to see. I had never seen so many beetles in one spot before, and so much destruction to one plant. On looking them up I found they are Alder leaf beetles. Along the side of the path were plant after plant, all covered in these shiny blue beetles, munching away merrily, leaves peppered with holes all over. From looking this up on the RHS it seems that this doesn’t actually harm the plant.

Continuing from here, we rounded the corner to the last half of the walk which let us view the old colliery building, the path up to the viewing point and a landscaped area between the two.

As I waited for the others to return, I tried spotting more insects and flowers, but also remembered that several years ago, we took the children with us and camped over at a literature festival in the Welsh countryside. It was held at a national trust house and grounds, filled with tents housing authors, workshops and refreshments. One of the talks we attended was by a man who had started a cloud appreciation society for a bit of fun. He had been amazed at how popular it had become and was there to encourage us all to look up and notice what can be found above us (mouths firmly closed). Ever since, we have, as a family, looked to the skies and commented on the shapes, faces and animals we can spot up there in nature’s lava lamp. I think this looks like a stereotypical UFO with the ring in the centre as the light. Hubby thinks it looks more like a snail. What do you see?

I returned to the starting spot, waiting for the loud return of the four children, hubby and Poppy. Long grasses line the path and mark the start of the decline to a picturesque but inaccessible stream. These last two photos, I think are interesting, not only because they show the grasses as being huge, but also because they were taken in the same place, consecutively, yet look so different. It makes me think of the instagram photos you see of smiling children, all looking at the camera at the same timer with clean faces and no debris surrounding them, or the perfectly posed shots showing no fat, rolls or blemishes. That simply isn’t real life. Reality has its imperfections and that is what makes life. Which of the two do you think would make the instagram cut?

Social media

Before you read this- TRIGGER WARNING- self harm, suicide.

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Maybe, as a 38 year old mum, I am old fashioned and out of touch. Perhaps I grew up in a different world to that which is available now. It is possible I have been naive.

But

I can remember watching Hollyoaks as a teenager, seeing the character played by Gemma Atkinson self harm. She secretly hid a metal pencil tin in her room with a compass point, which she used to scratch and cut her arm. I can remember being horrified that someone would even do that.

I can also remember other scenes from Hollyoaks from around the same time. One where a boy hired the pool and surprisesd his girlfriend with candles all around the poolside. One where a character developed epilepsy. It isn't just that one scene that I can recall.

As I have grown up, I have come to realise the importance of these soaps in addressing current issues. I can see why they discuss adoption, mental health issues, self harm, diabetes, marriage, divorce and financial issues. The impact a storyline on domestic abuse can have is massive. There is one going on now that fills all the soap news slots on TV. This one hits too close to home for me, being about coercive control and the 'Jekyll and Hyde' personality the man has. I can't watch it.

Important and essential life events and issues are brought to the forefront through these huge national shows. They sometimes get treated as if they are real, rather than a fictional storyline, but that is great for the charities associated with these areas of life.

When I was growing up there was no social media. We just about had the internet, but it was pretty basic still. Our school IT lessons consisted of using Microsoft programmes, basic web searches for pictures and hand written notes. There was no facebook, twitter, myspace, instagram, snapchat or other social media. 

Let's take a minute for you to take that in if you're younger than me.

Also, whilst we are at it, thre were no mobile phones either.

Right, you OK now? We had to ring people's houses and ask to speak to them. If someone else in the house picked up another phone, they could hear your conversation (something that always happened to me). Later on yahoo set up group chats and chat rooms became popular. You had to write in full sentences and there were no emojis. But, you could make friends with people you didn't know in real life that way. You could also chat with people who had the same interests as you.

As social media has begun in my twenties and thirties, I have joined most of them, seen their benefits and pitfalls and, now as a mum, am terrified as technology seems to be flying faster than life can run. Trying to keep up with safety for my children is tough, but I do my best to teach them safety and have to trust them.

I used facebook for selling crafts, chatting with people with similar interests, buying and selling, storing photos and keeping in touch with people. Twitter is still elusive to me. i don't really understand it, but i do use it and have an account linked to my instagram. Instagram is straightforward enough- I can cope with that. Snapchat and the rest are just there. I have accounts with most of them but don't regularly use them because 1. life is too short, 2. I can say and do everything on facebook and instagram and 3. I don't have the time.

I have also used social media to keep up to date with events that are relevant to us, local groups and the news. Having children with additional needs can be lonely, so I have found the groups on social media to be a lifeline. Sharing tips and strategies, therapist information and offering and receiving support. More recently, I have found the same sense of community through groups for people with disabilities and chronic illnesses. 

However, there are limits to my knowledge and understanding on all of social media. When instagram says 'link in bio...' I have no idea what that means. I don't know what someone means when they say to send them a message with their 'handle' (?) - do they mean to write a post and tag them in it? or to direct message them? 😕

After having my youngest, I suffered with postnatal depression and anxiety. We had a lot going on at the same time and it all got too much for me to cope with mentally. My health visitor was brilliant and spotted the changes in me, encouraged me to get help and checked on me through the whole time and afterwards. I went through some very dark days for well over a year and found coping mechanisms that included self harm.

Not many people know that. 

I spoke with a counsellor face to face, a charity worker through social media and, eventually, my husband. It became manageable over time as medication, CBT and counselling took effect. I was able to find other strategies to control my emotions, to cope with the life changing events that were going on and was able to stop self harming. 

Everytime we go throguh a highly stressful time, it is there, like a gone off cucumber at the back of the fridge. It is lurking but you don't want to deal with it. You don't want to go there but you know it is bound to happen some time or other. Other problems, events and thoguhts are put in the way, distracting you, keeping your mind busy. Hobbies, crafts, art, anything that keeps you busy. But eventually, all of that stops helping, you can't find anything else to go there and you have to deal with the rotten cucumber. 

That has started to happen recently for me. 

I have been colouring adult colouring books, reading library books, reading books I have found online, playing minecraft, crafting. drawing, painting, gardening, taking photographs, writing, completing calming sticker books and watching TV, but I still keep getting texts, unanswered calls, reminders and can't cope with things. 

My main 'problem' at the moment is my son leaving. He won't communicate with me. Not in speech, photo, message or writing. Nothing. His biological father is useless. He blames everything on me, always has done, and doesn't believe my son's diagnoses. He has always said it is behavioural and a parenting issue when we have asked for a break before now. Now I need to speak with my son, he won't help one bit. 

A bit of context- my son doesn't even live with him. He didn't take him in. Instead, my son is living with his biological father's parents.

I know my son is in the bedroom his father had when I was with him. I know the layout of the house, the area, the people, the wider family. I grew up in the city where he is now living. 

I keep having vivid dreams where I am back there, seeing him in that house. 

If my son wants nothing more to do with me, I need to know. Equally, if he needs time to work things out, I need to know. I can't cope with the not knowing. The calls he doesn't answer. The texts, messages and photos he doesn't even view. It is killing me.

All I want is to speak to him, to ask him what he wants and then i will know. I will know what he wants and I will have something to face. At the moment I don't know whether he wants to cut me out of his life forever or if this is temporaary whilst something else is going on. I don't know whether to keep trying to contact him or not. I have no answers as to whether to maintain or give up hope.

I only told my husband the extent of my distress a couple of days ago. I know he is worried. I know he was worried last time it got to this point. I am scared to tell anyone, so answer no to the 'do you have any thoughts of harming yourself?' because I don't want my girls being taken away. I don't want to be taken away.

The charity worker i spoke with previously was excellent. 

I tried looking the charity up the other day. I got nowhere on facebook, so decided to try instagram. Lots of things seem to be moving over to instagram from facebook, so I thought I might have better luck there.

Not knowing the name of the charity (it was eight years ago), I typed in 'self harm' into the search section. 

Don't do it.

I was shocked and upset by the results I saw.

So many vulnerable people are there, online, sharing their pain with the world. A few are private accounts, some are there to offer help- but you don't know who they really are. There are the odd trigger warning on the accounts and lots of messages on there about suicide too. But not what I need. No way fo finding the help and support I was looking for.

Besides, I generally find, unless you are in a specific social media group, you just get the 'hope you feel better soon hun' or '((hugs))' as a message, even from people who know you. 'hun' really annoys me. I think it's like 'sweetheart' in Cardiff. I know there are people who want attention and will post something like 'feeling shit' and nothing else. Then everyone comments and checks they are doing alright. But when you are posting something serious, with details and need help, I don't know that social media is the right place. I just don't think the correct, helpful support is there that way.

I write this blog as a parent, a disabled adult, a mum to children with autism and other additional needs and a person with chronic illnesses, but I don't dothat for any pity or comments. My blog is here to get things out of my head, to share the parts of life people don't talk about and are hidden to the outside. My instagram is also there for the same reason. I do read the comments, I do check out other people's blogs and accounts (unless they comment about some person who magically healed their chronic illnesses through yoga, meditation and a positive attitude....really?...or are selling turmeric, herbs or other), I do reply and it works for getting things out of my head. Even with this post, about something people didn't know before, there are things I won't post publically. 

The only purpose of this post is to bring up the fact that there are people going through the same coping strategies as i am, but they aredefining themselves by it. You are not your coping mechanism. You are not your illness or your trauma. It all shapes you and makes you into the wonderful, colourful mess you are (just as I am), but keep some of yourself for just you. See that it is only a part of you.

Feeling suicidal is no joke. It is an extremely dark place. Social media, in my opinion, is not the place to be seeking support for those thoughts. 

To those who have an account just to tell us 'don't do it'- that doesn't help. If you take away the one coping mechanism people have, what is left? It isn't so simple as you might think or wish.

I have found my GP to be useless. I have been honest with them about my thoughts and been sent away with a leaflet, even though i told them I had already tried the people at the other end of the leaflet and they told me my situation was too complex for them to deal with.

I have told my GP I need help and they have ignored me. I have taken my husband with me and still been ignored.

Only through the covid changes tothe GP practice, where they telephone triage us now, have I managed to get a referral for some help. The problem is that help is no seeing people because of Covid and has a waiting list of 'several weeks'. In the meantime there is nothing. Just survival.

Emailing the Samaritans at jo@samaritans.org is something I have found useful, also emailing family lives, but I haven't told them about self harm, just that I am not coping.

If you know me in realy life, sorry if this shocked you, but it is a part of me, just like all the trauma I have been through is. It doesn't change the person you know, I am still me and this has been an ongoing battle for many years. So please don't judge me, but if you can point me towards support I would be grateful.

If you know me in real life and are also struggling with these same issues, please find the confindence to chat about it. In person, on paper or text. Safely.

This has no impact on my skills as a Mum, wife or any other part of my life for my children or husband. Yes I am still worried to ask for help through those channels we all know can be scary and sometimes deaf to our pleas for help.

Please stay safe.

Birthdays, autism, and PDA

 

What a countdown we have had this year! 

Waiting is not Miss A's strength by any stretch of the imagination. She finds it hard to wait for dinner to be cooked, in a queue, for her turn and for anything, ever. We accept that and work with her. It is not for want of trying. Believe me, we have tried a lot over the years. She comes over as being a spoilt child to other people because there is no obvious outward sign of her difficulties. I find that upsetting and often wish people wouldn't just assume, but I suppose we all make assumptions about people. It is how we act on those that can make the difference.

I haven't actually told any of her friends that she has autism, or any other difficulties, but they seem to just accept her as she is. A few nights ago there were electrical storms, and one of her older friends called over to give her a hug and help her cope with everything.

When it comes to sharing, she is getting better with her friends, but out and about, when she has to wait to share a turn with someone she isn't too great.

We always have countdowns to big days or events, such as holidays, special days out, birthdays and christmas. Thankfully you can ask Alexa how many days there are until a specific date so I don't have to work it out anymore and keep count. I used to have a note on my phones with the days counting down for her. 

This year Miss A turned eight. Years always seem to fly by when it comes to birthdays, but this year seems to have gone exceptionally fast. Perhaps it is the lockdown and moving house just before her 7th birthday, or how busy we have all been, i don't know why, but looking at the timeline hop pictures from previous years on facebook I couldn't believe how quickly she has grown up to this age, and how much she has changed in a year.

In the run up to her birthday she always gets extremely excited. She can't cope with the excitement and spends the last week or two on the edge of a meltdown. This year has been no different. Because we know how much she struggles, we try to keep her distracted usually. This has been more tricky this syear with the restrictions and concerns over Covid-19. 

We took a trip to Gulliver's resort near Rotherham for a couple of days (see my blog post here), allowed a lot of sleepovers and time playing with her friends up until the last five days or so, had the hot tub going, got her an indoor swing and generally tried to keep her busy and distracted. The electrical storms a few days before the big day didn't help things, but it finally arrived yesterday. She is now eight years old.

We normally give the children a choice between a day out, having friends over or a party. They can't cope withthe pressure of a party, and I can't cope with the concern over whether people will come or not (parents of children with autism or other additional needs or disabilities I am sure you can relate). I always try to lead them towards one of the other options instead, so, this year she had friends over. 

Because my son doesn't live here full time at the moment, we have repurposed his bedroom as a chillout space where the girls can relax and get away from other distractions when needed. It is also used for sleepovers, and has come in useful several times already. When Miss A can't sleep in her own bed (for multiple reasons), she sleeps in this room. She doesn't sleep on the bed (demand), she takes blankets in with her and sleeps on the floor instead. 

I don't know if it is because her bedroom is too busy, because her bed is a demand, because she has always had issues with sleep, or another reason entirely that she can't tell us as yet. I have looked into recommendations for a bedroom for a child with similar difficulties to Miss A, but none of them would work for her. She wouldn't be able to live in a minimalistic room and the rest of our home would be covered in her things. Sharing a room with Miss G is a big no-no. We tried that through necessity and it did not work at all. Both of them need their own space and have different needs when it comes to their space. Miss G has other reasons for needing her own room too. So we make do as best we can with the room that works for her (whilst trying to gently persuade her to let us help tidy it up, sort through her toys etc. ). She has black out blinds that can be completely removed in the day time and stuck up in the nights. We have as much of a bedtime routine as is possible for a child with PDA. She has a large bed so she can starfish/worm/wriggle around in the night without falling out of the bed, one of our cats often joins her in there at night too. She has blankets for warmth and a fan to cool down by. 

She invited five girls in total to her birthday slumber party, and all of them showed up. We had chatted about what she wanted to happen and when, so I knew what she was expecting. As soon as everyone had arrived I ordered a Pizza Hut delivery for them all (two giant pizzas and two gluten free, cheese free pizzas) plus hubby got chips from the local chipshop to accompany the pizza (far cheaper that way). They all had ice cream for afters and a table full of activities to be getting on with as and when they chose, plus the trampolines and swings.

On arrival, each girl was given their party bag with an eye mask, lucky coin, positive cards, glow sticks, hair chalk, drink and snacks. 

They all chalked eachother's hair, except for one girl who had her arms and face chalked instead. They painted their nails and tried to get the terrible nail foils to work (useless). Rocks were painted, necklaces and bracelets made with beads, tattoos drawn using a toy tattoo pen (which I think is brilliantly realistic) and lots of fun had.

There was a little bit of awkwardness with one friend who was from a different place to her other friends, so they didn't know eachother all that well. A quick revisit from Mum, cuddly toy and reassurance helped there. Miss A seems to have two friends she spends most of her time with. It seemed that they both felt it when they were together and sleeping arrangements had to be made. When there is one for a sleepover, they share her bed with her, so with them both there I supposee one felt displaced. Miss G led some 'get to kjnow you' games in the chill-out room and it all got easier. By the morning you wouldn't know there had been any awkwardness at all. 

I sang Happy Birthday to Miss A at midnight, at the start of her birthday. She was sat up in her bed, chatting with two of her friends. I could still hear they were awake at 2am. Then at 4-5am they came downstairs. I pretended to be asleep a couple of times when our bedroom door was opened, hoping they might go back to bed. Eventually, at 8am we gave up and all got up. It turned oiut that, after insisting all her friends got up and came downstairs early, Miss A had then fallen asleep on the sofa. Typical.

After opening all her cards and gifts, she had her birthday cake, spent time playing with her friends outside and on the indoor swing and chose a Mc Donalds for lunch.

We only have two spare seats in our car, so Miss A and Miss G took their best friends to McDonalds, then over to a toy store to spend her birthday money (I told you she doesn't like to wait), before eventually heading back home. She was asleep in the car on the way home- no surprises there. 

I know Miss G's best friend was asleep before we had even left her street and both hubby and I had to sleep when we got home too.

After all of that, she had another sleepover last night. Thankfully they both slept though- I think they needed it!

The main thing for us is that the children are happy and healthy. She was definitely happy, and the pizza and Mc Donalds were a treat.

As for finding a bit of calm and peace amongst the crazineses that has been the past fortnight?- we have had a lot of barbecues, spent time in the garden having a fire, watching the flames and taking deep breathes before returning to the hurricane. 

I have also been looking after the garden plants, including this Foxglove that Miss G chose. There are always bumblebees flitting from flower to flower here and on the French lavender. I find it a calming place to sit and relax. 

I have also found myself a place to relax indoors now, away from my bed. It means shutting off the indoor swing, so I can sit behind that door and use the family computer. I have created my own Minecraft world where everything is calm, peaceful, colourful, fair and makes sense (well, mostly). I even decided to mine for gold (like they do on Gold Rush, a TV programme me and Hubby have been watching). 

Apart from those escapes, life is still pretty hectic and full on. Between our two girls and their different needs, lifestyles and personalities, we also have their friends who live locally, the chaos that follows Miss A and pre-teen hormones to consider. 

But one of their friends did manage to capture this awesome photo for me the other night- the calm before the storms

Heatwave

 All over the news for the past few days they have been announcing there will be a heatwave. Apparently this one will last more than 24hours too.

Today is the first official day of said heatwave, although we have been living outside for most of the past week, hiding under umbrellas in the humid weather during the inevitable showers.

We have managed to plant a few of our potted plants into the garden now and are trying to grow a mint offcut so we can have two mint plants in the garden.

Without a doubt, the best purchase we have made recently has been the BBQ. We used to have charcoal ones that took so long we always gave up. This time we went for a gas version and we will never look back. It is just like cooking inside except the unique barbecue smell floats around the garden, making all the neighbours salivate.

We also have our inflatable hot tub up and running for our girls and us, but it is mostly occupied by our daughters and their friends. A couple I suspect are only here because of the hot tub, but as long as everyone is safe and happy I don't mind. When things have gone too far then we have had to step in and stop people calling over, but usually it all works out well.

Now that I can safely access the rear garden and spend time with my family outdoors, life feels more free. Before I felt as if that part of ourhome was out of bounbds for me and that was very frustrating. We have a lovely selection of potted plants along the side of our home now, near the door i can use to enter and exit the house. I love to sit out there, or at the corner of the ramp and watch the bumblebees and butterflies in the garden.

There is nothing better, on a warm sunny day than sitting in the warmth with a gin and lemonade or a glass of wine, a book and hearing the sound of children having a good time whilst smelling the tea cooking on the BBQ.

I have such a selection of books to read I can't decide where to start most days. I am currently reading a few books. I am reading:

The Runaway Daughter by Joanna Rees- a large print fictgional novel about a girl who escapes her previous life and begins a new life with a new name in London.

PDA Paradox by Harry Thompson- A book about PDA by someone who actually has the PDA diagnosis and can offer an insight into day to day problems from the inside.

Have You Eaten Grandma? by Gyles Brandreth. Strictly a book about grammar and the use of the English language, but full of comedy and quips.

I keep changing between the three, depending on my mood and surroundings. I need to concentrate more for some than others and am reluctant to take the library's book out and about in case I leave it somewhere (quite likely knowing my awful memory).

Having our girls and their friends happy and playing together, doing role plays around Undertale and FNAF makes our day. Quite often it comes to around 9pm and the girls are asking for sleepovers, negotiating with us over where people will sleep, if people will sleep and times to get up the next day. We love it and know it is what Miss G wanted in our other homes but couldn't do because of her own difficulties and the children in the locations we were in.

The BBQ also seems to bring people together. We have a lot of veggies on ours because I am not keen on meat, but it is great to see the children trying new things for the first time. One girl shocked me when she said she doesn't get food like this usually. They just have chips, sausages and food like that with healthy food on a friday. One other girls thanked us for inviting her over, saying it was the first time she had ever been over someone else's house.

I went rogue the other day and purchased a telescopic flag pole and a fish wind sock for the garden, along with festival style ground flags. The fish makes me smile when I see it 'swimming' around in the breeze out there. I just hope it doesn't annoy the neighbours too much.

Gulliver's Valley

Our first trip to Gulliver's was last month. We had a Wowcher code for a family of four to enter any of the Gulliver's parks of our choice this season. I had been nervous about whether we would get to use it with the lockdown and Covid-19. When I saw they were reopened we were off that same month.

We went to Matlock Bath for our first experience of Gulliver's. I had looked it up online, as I always do, looking for accessibility information for myself in the powerchair and also for my daughters who both have autism.

There seemed to be no problems, if anything people were saying how positive an experience Gulliver's is for people on the autistic spectrum. So we went ahead with our day out with no concerns. Until we arrived. 

There were no disabled car park spaces near the entrance, but as the car park was gravel based i assumed it was because people could leave their own distances perhaps. 

Then we descended to the main entrance area and a member of staff came over to speak to me. She told me the park was very steep and people in mobility scooters and electric wheelchairs often struggle to ascend and descend the walkways. She told me to go ahead and try it if I was happy to and that we could always borrow a manual wheelchair or I may wish to not even enter the park due to the inclines. 

There was no chance we could turn around and leave with the girls. The meltdowns would havew been epic. I went ahead, tried the hills and although it was scary and gave me very sore legs the next day, the walkways were all just about accessible for me. 

I think it is because my powerchair has six main wheels, giving me extra stability on hills, ideal for Gulliver's matlock Bath.

The day we had there was amazing. The rides were all perfect for the girls and Hubby enjoyed too.

As with anything they enjoy, the girls wanted to go back again. I wasn't in a particular rush to deal with the muscle pains in my legs again so soon, so looked around at the other parks in the UK. There are a good few of them to choose from. One seemed to be practically brand new. 

Thinking about my wheelchair and the toilets, I hoped the new site would have a changing places toilet included in their plans before their recent build. As it was a little further to drive for the day, I looked at their accommodation too. 

We have never stayed on a theme park before so it was a really special treat for Miss G and Miss A. It also made the trip easier for Hubby, splitting the driving over a couple of days.

We had the choice of an accessible princess room or an accessible lodge (static caravan). The princess room was marginally cheaper (because it sleeps 5 compared to the 6 in a lodge). The bedrooms in the princess room looked adorable, especially the children's room, so I went ahead and booked it for a couple of weeks after our first trip.

I am terrible at keeping secrets and surprises like this so told the girls almost straight away. They were so excited, Miss A was straight onto a daily countdown and was packed a couple of days before we left.

We arrived at Gulliver's Valley resort for check-in at 4pm, found the check-in area and were then met by a princess. She tried talking to the children but they were so overwhelmed with everything they were practically silent. In the car, Miss A had been super excited and hadn't stopped talking about the park and bedroom (except to sleep). The difference in her was amazing. 

We were in Cinderella 1. An accessible room that sleeps up to five people, two adults and up to three children.

The girls ran straight in and explored the room whilst I waited for them to calm down enough for me to safely enter without running either of them over.

The threshold into the room was a bit rough- a bump down into the room. There was a pretty room on the right for the children, hidden by a curtain screen, with cut out windows and their own lights by their bunk beds. It was very cute and sweetly done. Each bed had a Gulliver's night cap packaged on the duvet for them too.

Further down the short corridor was the coat hook, set at average person height, not accessible for me. Then the accessible bathroom. 

The bathroom had been set up as almost a wet room. There were grab rails for the sink, shower and toilet, but things like a shower stool/chair, toilet raiser and accessible sink were lacking. I couldn't get my wheelchair close enough to the high sink to use it because the toilet was in the way.

Ahead from the bathroom door was a luggage rack for any suitcases and a portable clothes rail with a few hangers. These were blocking my entry into the area where our bed was so hubby put them outside on the decking area. 

Past those obstacles and I was into the area with our bed. There wasn't enough space for me to get down the side of the bed in my chair, so Hubby had to rearrange the bedroom furniture to widen the space between the bathroom and bed. It meant we were on the wrong sides of the bed, but atleast I could get into and out of bed.

There was an under-counter fridge for the breakfasts. This was great for us to store our almond milk in, but not so great because it wasn't accessible for me from my wheelchair at all. I had the same problem with the lamps. They were very nice lamps that fitted perfectly with the room design, but the foot switches don't work when you are in a wheelchair.

As well as the room, we also had our own little decking area outside. There were a couple of metal chairs out there and trellis separating it from next door's area. The door leading to outside wasn't accessible at all. There was a huge drop down to the decking and again no ramp from the decking out. 

It felt as if the 'accessible ' label had been granted purely because there were grab rails in the bathroom and no cubicle around the shower. 

I was determined not to let it put a dampener on things for us all though. We did our best to manage with what was there and not make a fuss.

We were pleasantly surprised to find out there was evening entertainment for guests of the park, including bingo, party dances and a singer. After we finished our Pizza Hut tea we went down to the entertainment to join in. We were told at the end that we could also play indoor mini/crazy golf and al guests got early access to the Dragon's Lair giant bouncy castle and climbing walls in the morning. 

I feel the information for guests staying overnight needs to be clearer. Maybe a leaflet handed out on check-in stating what is available and when. We didn't have a clue what we could and couldn't do and only found out by repeatedly asking. 

Gulliver's Valley theme park is excellent for children with autism though. A lady at the bouncy castle in the morning told me about yellow bands we could get from main reception that clearly showed the children were exempt from wearing face masks so we didn't have to keep telling every ride operator. Then a mother nearby overheard and came to speak to me. Her son works at Gulliver's so she knew what they could do for children with disabilities, including autism. If you take proof that they cannot queue to main reception, you can have up to ten ride passes that allow you (up to 4 people per pass) to skip the queue for a ride. Miss G is OK at waiting in a queue but Miss A is a nightmare. She simply cannot wait for anything, so these passes were a godsend for us. 

In the morning, when the park was filling up, we headed for the furthest area first and worked our way back towards Lilliput lane for lunch. Most people seemed to be doing the opposite, so the queues weren't too bad. After lunch, we had 11 rides left in total that the girls hadn't been on at all, so the ride tokens were used for the remaining rides they chose. 

Amazingly, the pirate ship turned out to be a favourite for Miss G- she usually hates anything fast or that moves too much. Her face was a picture on there with a huge grin.

Miss A is more of an adrenalin junkie and loved the water rides the most, as well as the drop towers.

By the end of the day they had been on everything they wanted to and on their favourites more than once. It was time to get a slush puppy drink, 100g sweets and head home with our new cuddly Gully, T-Rex and Gilly, with a special wave for Miss A from Gilly as we left.

I can't wait to go back, especially when their expansion plans come true and their accessible area is built. I hope it is truly accessible and that they consult a wheelchair user before building.

We are definately a family of Gulliver's fans.