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

In the absence of light

Beating in my ears, positive messages

Lyrics carefully selected, playlist perfect

Mind breaks through

Journal with gels, felts, stickers

Activities, strong stories, uplifting quotes

Mind breaks through

Blocks, castles, my world

Windmills, crafting my imagination

Mind breaks through

Books to read, needs concentration

Print wanders, mixes, muddled in my head

Mind breaks through

Fleeting humour, children, pets

Smiling, almost forgetting

Mind breaks through

Underestimating the power of the mind

Dark, swirling, sucking me under

Starts with a ding, then a sting

Checking- Nothing

The mind breaks through

Logic knows exit exists

Brain cannot compute, links dissolved

Heartbreak took it all

Mind is winning

...

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.