Tag: #autism #learningdifficulties #sensory

We’ve made it to summer holidays … and the first Home visit

It’s been a very strange 3 months as I’m sure you will agree and the last month really busy. Busy at work and also I think I tried to keep myself busy just to get through. I’ve rediscovered painting and taught myself to crochet.

See more pictures at Old Button Tales Art

I’ve made lots of end of term and birthday gifts. Which I have loved doing. We’ve also had interesting moments, difficult times and some hilarious moments I never expected – putting grandad on a Zoom cricket umpires meeting with 25 others being one of these! 🤣🤣🙈🤣🤣 Let’s just say hilarious and we all felt like part of it as we could all hear it! Why do over 70s shout when it comes to technology? 🤔

We’ve had some lovely visits to see Holly. We’ve had to go for walks in the park because of Covid restrictions.

There’s been FaceTime with Holly. Sometimes with Grandad. Just look at both their smiles!

All smiles for FaceTime with Grandad

And when Grandad joined our bubble I took him with me for a trip to the ice cream parlour with Holly.

Then today we had our first home visit. Holly spent all morning in the garden.

Swinging

And she even found her old spot in the shed! Quite a bit of flower/plant pulling…. Holly pruning! But it will grow back! She especially loved picking the strawberries and squeezing them!

We’ve been for a walk in a local park to get ice cream. Lots of hugs and singing.

A great day. Looking forward to next time.

Completely different to the usual summer holidays experience. Please see my previous blog posts. How to stack the dishwasher with a Holly in the House

The dreaded summer holidays

When rejection starts to feel personal

We were offered short breaks support when Holly was very young. At first 1:1 and then later 2:1. Now it took me a couple of years to feel comfortable with this- well I say that but not sure I actually feel completely comfortable with it at all! I will never forget that feeling of leaving my vulnerable, autistic child with learning difficulties with a complete stranger!!! But over the years it’s got harder to keep up the intensive 1:1 full attention that Holly needs without becoming physically and mentally exhausted. So any help at all became very much appreciated.But over the years we have had many many carers. So many that I can see the signs that they’re going to leave or quit way before it happens now! The little gestures, the reactions to Hollys behaviour, the odd comments. I know it’s coming!! The “sorry but we are going to have to withdraw our service … we are no longer able to keep Holly or our staff safe … we don’t think our service is appropriate… etc … etc” I’ve heard all these phrases or similar for the last 10 years! Which ok I fully understand. Yes it’s bloody hard work! It’s relentless! It’s physically demanding and mentally demanding as you can’t let your guard down for a second! But having so many people quit or move on it does start to feel personal. And I have had thoughts like “Nobody wants her”, “Nobody cares about her”etc.

Now don’t get me wrong I admire anyone wanting to go into this line of work and we have met some absolutely amazing people/carers too who have moved on for other reasons, some I am honoured to call my friends. And I always say the good ones always pop up again! There are a few people that we have met several times in different places or under different guises. And some we still keep in touch with. ❤️ I personally think that generally carers are undervalued and most definitely underpaid! Lets face it… to look after Holly I think you sometimes need danger money! The people looking after Holly need to be specialists in certain areas – we know – you can’t just ask anyone to look after Holly. They need to have a certain personality, resilience, patience and a caring nature, they need learning disability and autism training as a minimum or it just doesn’t work (we know from Experience) And if you need 2:1 you can’t just expect anyone to just turn up. We know from experience that it has to be two people who already get on (or at least know each other!!) as Holly will sense the divide before they start!

Now we’ve struggled the last few years to get any carers at all. That’s how Holly ended up in full time residential care. That all went wrong and now she’s home again. Something else that didn’t work out.

What is really sad is that Holly makes attachments to some of these people so she mentions different peoples names mostly I think the ones that she liked or she misses and this also includes other children she’s got to know at respite. Occasionally we find a photo of a carer and she’ll say their name and then “momoger?” which means ‘tomorrow’ and then of course we have to explain that she won’t see them.

I think we’ve had that many rejections, refusals and let downs that I am now very wary of any help- carers, placements etc. And when we do get new carers or placement interests I can’t get my hopes up until I know they are definitely working or happening.

LATEST UPDATE – Good news! Holly has a new placement starting in a few weeks and even though I know this is the best thing for all of us and this is different placement , in the back of my mind I can’t help but think we’ve been here before and I feel anxious that it’s going to fall through again. I know I’ve also got to through all the emotions again like last time. (See link to previous blog at the end) But I have to be positive and believe it will work. The staff are lovely and are already working hard to get to know Holly and make it work. For Holly it’s the people who are important. She’s interested in them, she wants to get to know them. I suppose over the last 10 years all we’ve really wanted is people to accept, understand, get to know and just like Holly ❤️❤️❤️❤️

I’ll keep you all updated.

Previous blog My head’s a shed

Halloween and Holly🎃

Our experiences of Halloween have changed over the years. When Holly was younger we did do the ‘Trick or Treat’ thing. We took Holly in her buggy/wheelchair. Luckily we live in a small village and a lot of people know us and we tended to go to select houses of the people we know.

She’s always liked dressing up and other people dressed up doesn’t bother her either although she likes to know who it is so will grab and lift up masks given half the chance! Holly often looks like an extra from the ‘Thriller’ video because of her clothes shredding so we’ve got plenty Instant fancy dress if anyone needs any?!! 🤣🤣🤣

Here’s a link from my previous blog on the clothes shredding Holly the Master Shredder

Of course the sweets are always the best part for Holly. The sweets always cause us issues as she wants to eat them all in one go! (Including any wrappers or sticks!🙈) In the past we had to hide the sweets to give to trick or treaters on top of the kitchen cupboard. So every time someone knocked on the door it was like a military assault course to get the sweets to the children at the door before Holly grabbed them.

The last couple of years Holly hasn’t wanted to go out and has become very anxious. Last year her anxiety was so bad – she trashed her room, broke things, became aggressive and there was lots of self- harming and meltdowns 😢

This year we are going to try and avoid the anxiety – she’s at respite! I suppose we also have to remember that she is a 14 year old teenage girl. She’s probably not the only teenager that doesn’t want to go ‘trick or treating’ anymore!

The one thing we still do is the pumpkins 🎃 In the past we have sometimes grown our own pumpkins in the garden. Unfortunately this year the dog got over excited at seeing a hedgehog in the garden and turned the pumpkin patch into the trenches!! The hedgehog was absolutely fine – however the pumpkin plants were not!! 🙈🙈😆😆

So we bought our pumpkins from the shop. It wasn’t the lovely family outing to choose a pumpkin, more our usual… grandad sits in the car with Holly and I dash around the supermarket as fast as I can!

Holly was desperate to make the lanterns. She kept repeating “Halloween” over and over. I had to leave them in the car overnight so she would stop obsessing over them (and they were safe from destruction!🙈🤣) So they were freezing cold when we started to scoop out the middle! 😱 🥶 Holly was interested for about 5 minutes! She tried to eat it – didn’t like it – then lost interest! She was interested again when we had finished and put the candles in. She kept saying “Halloween!”

Holly, cats and hairdryers

*Random light hearted post!

I’ve had a crappy week so here’s a random post. I like random and let’s face it we rarely do normal! 😆 Just Something that made me laugh!

Whilst searching for something this week I came across this photo. It’s an old photo, our old house, before children… well when the cats were our children! 😆😆😆

My first thought was ‘Awww the cats!’ The large, gentle giant is ‘Thomas’. Or as Holly called him.. “TomTom”. He sadly passed away in January 2017 at the grand old age of 19. He was lovely, so placid he let Jasmine carry him around and dress him up and when he’d had enough he’d hide in cupboards or the bottom of the wardrobe. The kitten here is Molly or “Moggy-cat” as Holly calls her. She’s never grown much bigger, moody and now an old lady at nearly 18. Both cats – Holly never really paid very much attention to and she would quite often just sit on them – not sure if she just forgot they were there or thought they would disappear or teleport somewhere else when she sat down?? Now Molly is too old to jump up on the sofa and spends most of her time in the dogs bed!!

My second thought when looking the photo was… ooo the hairdryer! You see I very rarely use a hairdryer now. I don’t have the time and if I do use it on special occasions it’s just to blast my hair whilst hanging upside down! Now my close friends and work friends know that I actually dry my hair in the car on the way to work! Simple method… turn the heat up, fan on full and point the vents to the sides of my head! It’s a bit like a warm open top car experience but inside the car!! 🤣🤣🤣 (I’ve also been known to dry small items of clothing using the same idea!! 🙈 ) It works well for me although if I’m not careful and I don’t get the direction of the vents right my fringe ends up like THAT scene in the film ‘Something about Mary!’ 🤣🤣🤣

Yep I’ll leave you with that thought!! 🤣🤣🤣 Told you I needed a laugh at the end of the week I’ve had! 😆😆😆

Swinging!

So 3 different swings in the garden and she chooses to sit on the BACK OF THE SWING SEAT!

Here she is sat there looking at me through the kitchen window! Seriously #NoFear #NoSenseofDanger this girl 🙈😱😆 eventhough she has fallen off a few times! She has such a high pain threshhold mind or she doesn’t always feel pain so don’t always know if she’s hurt herself. If something hurts really bad she tends to laugh.

She does love swinging and bouncing https://mummy-jet.home.blog/2019/08/09/bouncing-and-swinging/

Bouncing and swinging

Holly loves to bounce and I have to say this gym ball was a good buy! She has used it a lot this week!

This bouncing means we occasionally get moments of calm like this

Although very short moments and they are very rare! 😆😆

She also loves the trampoline – outside and inside.

Another way of stimming is swinging. Holly likes this too. We have a swing outside – the normal swing and a disability seat type swing. It’s taken a long time but she can now use the normal seat swing (and remember to hold on! Sometimes! 🙈😊)

Thinking now maybe our next purchase or possible birthday present could be a different kind of swing – maybe the round ‘nest’ type swing so she can lay on it or something inside? Anyone got any suggestions please?

Previous blog about gym ball https://mummy-jet.home.blog/2019/07/05/sensory-needs-2-the-need-to-move/

Our once a year Barbecue!

So it was a lovely weekend. Maybe summer is finally here? (Or May be that was it!) Every year we think ‘Yes let’s have a barbecue’! And then every year we think ‘that’s it! Far too stressful! We’ve done our bit for the barbecuing this year!’ What should be a relaxed, fun, family eating experience turns into a stressful, anxiety filled nightmare for us.

First problem Holly has no sense of danger! Ermmmm … fire! 🔥 So from the moment she could walk this was not good. She would try to touch the barbecue, grab food from it and just never got the “Do t touch!it’s hot!” thing. So we used to put the barbecue on the front garden and one of us would stand out there and cook the food whilst the rest of us were in the back garden waiting for the food. Now bearing in mind that Holly is hypersensitive to smells this drove her mad- she could smell food but couldn’t have it! Luckily we also have some lovely, very understanding friends and neighbours!

Secondly Holly can not cope with the fact that we are eating outside and not at the kitchen table. This causes major anxiety! And she ends up wandering around the garden, in and out of the house, slamming doors or bouncing on the trampoline watching us eat and not eating herself! To be honest it’s rare if Holly sits down through out any meal – she is always getting up and down at the table! This has got better over the years and she will sit for short bursts of time. This was last years barbecue memory…

Holly has never coped with the buffet/help yourself style of eating. If there is food in the bowl on the table to share she thinks she can just eat it all! More anxiety!

However this year was a little bit more successful! We pre-warned Holly the day before that we were having a barbecue! So the next morning she kept going into the garden, pointing to the table and saying “dinner!” So she knew that we were eating outside. She pointed to the barbecue saying “barbecue!” The last few years the barbecue has advanced into the back garden!! Yay! It’s been there since last year! So she is used to it of course!! (Our excuse anyway! 🤣🤣) But we still have to keep a very close eye on her all the time. So as weather forecast was good… we went for it! Ok Holly decided to eat compost for starter! But she’s had worse!! 🙈

She did sit at the table and eat in between bouncing on the trampoline!

She did eat more than anyone else this year! – helping herself but she was much calmer! That could have something to do with the fact she helped herself to the Rescue Remedy Emergency Spray in my bag before we started eating!! 🙈 Or that Jasmine wasn’t there?? Therefore quieter? Who knows? It was definitely better than usual! So much so we may even have another barbecue this year!!! Woohoo 2 barbecues in one year?! Well if the weather stays nice that is! 😆😆

Autism Awareness Day – thank you for your support.

I actually wrote this a year ago before I started my blog and then I couldn’t decide whether to post it or not. (I think it may have made my twitter page.) I was nervous of the reaction it might have created. But since starting my blog I am overwhelmed by the amount of support I’ve had from everyone and I think as its Autism Awareness Day again it seems appropriate to now share it with you.

So its #AutismAwarenessMonth

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This is one of my favourite photos. It’s from a few years ago now. She looks so calm. It reminds me of the ‘Yes!’ moments, the smiley Holly, that laugh, the sense of humour and loving side. There is not a hint of the constant daily struggles – the acute anxiety, the violent challenging behaviour, the self-harm, the head banging, the punching, kicking, pinching, screaming, the meltdowns, the total lack of understanding of safety, the non-verbal communication struggle, incontinence, clothes ripping & shredding, destructive behaviour!

We have good days, we have dark days! We have very unpredictable days. But I love Holly whole heartedly and would do anything for her. Yes we have have travelled a road we never expected to be on but we have learned things we never knew possible and met some incredible people we may never have met without this amazing Autism journey!

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So as it is Autism Awareness Month I’d like to say THANK YOU to  all my family, friends, colleagues & professionals for being so supportive. It could be just a like or comment on social media, sharing that funny memory that makes me laugh, catch up with an old friend, the gossip at school pick up, the tea and chat, the wine and giggles, the message, text, phone call that helps me keep in touch, the shoulder to cry on, that knowing nod when I’m having a rant, the advice before a meeting or filling in a form, that understanding when we are late or forget something because we’ve had a bad hour,  the pick-ups and drop-offs, support with Jasmine, looking after Holly so I can pop to the shops, go out or spend quality time with others, the courses, carer time, respite …  and everything else in between. I really do appreciate it.

Thank you. I wouldn’t survive without you all!

The 12 Joys of an ASD Christmas #6 Presents!

I think there may be present confusion! Whenever Holly sees a present she says “Happy Birthday”. Not sure if it’s because she associates all presents with this phrase or it could just be because she can’t say “Merry Christmas” ??? Who knows.

Added to the confusion is the fact that it is Grandads birthday on Christmas Day – so we do sing Happy Birthday on Christmas Day with a Christmasy birthday cake!

Our biggest issue with Christmas presents is that if Holly sees a present she wants to open it there and then! There is no waiting and she doesn’t care who it is for! So if we get presents early we have to hide them in locked cupboards before she sees them! She’s not always bothered what’s inside – unless it’s chocolate of course – she can smell that through any number of layers of wrapping paper from a different room!

If there’s lots of presents she will part open one and then go on to the next. At Christmas we have to put Hollys presents in one room and Jasmines presents in another room that we can lock just so Holly doesn’t get to them all!

Once opened we may think the presents are safe. Oh no! Holly has been known to open boxes and chew or break things. So everything has to be transferred to locked bedrooms. Some presents don’t make it to New Year unfortunately. I remember one year we bought a lovely playmobil fairy castle. I spent the whole of Boxing Day building it. The next day Holly tripped and fell on it… destroyed it in less than 10 seconds! We’ve never bought playmobil again!

So Merry Christmas everyone. Hope Santa brings you what you wish for.