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

A day in pictures

This was how my 'relaxing day in the sun' began. I pass this area on my way down the ramp tothe back garden, so we have most of our potted plants together. I love it- they are so bright and smell amazing too. We already have bees visiting and a plethora of butterflies too. Our of shot are angel wings, roses, herbs and a selection of colourful flowers. We are also hoping the meadow flower mix will take but perhaps we left it a tad late this year.

The bark sesemed dry so I decided to top them up with water early on, givew them a fighting chance. The heat hit me as I left the house, like when you go on holiday and leave the aeroplane to a wall of warmth. I was so impressed with the strength of the rainbow it deserved to be captured in a photograph. If only it was that easy to create a pot of gold at the end too ...

Hubby arrived home with Miss G and her BFF just as Miss A was getting into mischief in the hot tub. I haad found myself a sunny area to relax in with my books, drinks and dogs and had even been able to drag a chair around again as a foot rest for my terribly swollen feet and legs (not heat related). The dogs had their campbed out in the shade (of course they didn't use it, preferring to lie in the sun and pant terribly (so Miss A soaked them a few times to help cool them down, especially our largest). We started off with two of these water cannons, ended up with just one, but the girls all had good fun soaking eachother, making it rain and cleaning the top floor windows. Strict rules over not soaking me or my chair were about it. The trampoline, garden and all who entered it were fair game.

Miss A and I had prepared for the day together as we left the house by collecting jars of water and adding mint. Apparently wasps don't like mint plants so it was something we had to try. I was ready with my Migralens overglasses on, two books to read, umbrella (it did rain later on a few times so I just carried on sitting there in the sticky heat, but in the shade of our beautiful inside out umbrella). 

I don't know how I managed it, but i finished reading How to be human, then moved on to this book pictured and have got to the point where the plot is becoming unravelled and it is getting more interesting. It seemed that I was being called every few seconds 'mummy...'.....'mummy....' with the oddest questions (actually fairly regular in our home). Between Miss A calling me, Miss G getting hot and bothered and not coping very well with it, then her BFF being left outside whilst Miss G calmed down again, I don't know how I managed to take in anything from the books or my surroundings. I felt like having bacon on the barbecue so did a quick amazon now order and we waited for our early evening delivery.

As soon as the delivery was made- Morrisons food in brown paper bags- the veg was chopped, sausages and bacon on a clean tray and out we went. The BBQ was heated (gas thank goodness or we would still be out there now waiting for it to heat up from our previous experiences), and on went our tea. We had sweet potato slices, courgette slices, onions, mixed vegetables, peppers (I love them when the skin is burnt and bubbles), gluten free chipolatas and, of course, bacon. 

We were umming and ahhing over whether to purchase a barbecue. Not being huge meat eaters we wondered whether it would be worth the money- would it be used enough? Since we have had it and found the patio gas we have had atleast four barbecues already. Vegetable kebabs, melted cheese on sausages...delicious. We were talking last night about whether we should have gone for the larger size- it never seems to be just our family here, we always have visitors....maybe next year 

After all the sun, reading, children, cooking, eating and drinking, a dip in thehot tub was in order. Not very dignified or graceful, but I got in and out safely

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