Happy Easter! Our alternative Egg Hunt

Happy Easter everyone!

All our chocolate has been eaten or hidden away in the garage so it’s not on view. If it can be seen, even on top of the kitchen cupboards, Holly cannot focus on anything else and becomes obsessed and anxious. This then leads to challenging behaviour. So she’s eaten some and the rest are out of sight for later.

In the past we have had done the local village Easter egg hunt and done our own around the house or garden but when Holly finds chocolate she eats in one go – foil/paper everything! There’s not a chance to unwrap it! So this year we did an alternative egg hunt. Yesterday Holly found a white chalk pen and decided to leave her mark around the house! This gave me an idea.

So I thought I could turn this into a good activity! And at least it wasn’t Permanent marker like she’s done before!

So instead of finding chocolate eggs this was Jasmines task..,

Brilliant! We get the marks cleaned off and Jasmine gets chocolate! Win win!

It worked a treat! 😆😆😆

Happy Easter everyone hope you’re all eating chocolate and having a lovely day! 🐣

Destruction and Damage Limitation!

I don’t go in for the “superpowers” thing*. Nothing against the idea. It’s just not me! I’m more of a ‘this is how it really is!’ type person. BUT… IF I DID….

I would have to say that Hollys superpower would be the ability to break absolutely anything! Her strength, power, speed and persistence are second to none! In fact she’s a bit like a hurricane destroying everything in her path!

There’s two categories of destruction. There’s the impulsive almost knee jerk reaction to destroy eg at the moment it’s glasses… it’s like a routine… see glasses- grab glasses- snap glasses!

It’s done so quickly that you just don’t have time to react to even try to stop her. Same with hair bobbles – can never find one because Holly snaps them! She once found a bag of loom bands and just sat snapping them for at least 10 minutes – perhaps a possible calming activity for future!

Then there’s the bigger damage which takes more time and possibly calculating! We’ve had all sorts broken! Holly once pulled the radiator off the wall, brackets and all! And on Halloween last year she was extremely anxious and somehow snapped the cooker knob off!

There’s always been destructive behaviour. It’s nothing new but I think we have learned over many years, ways to minimise the destruction or prevent breakages happening!

One way to minimise destruction is to limit where Holly can go. So we have turn locks (like the ones on bathroom doors) on all the rooms in our house except Hollys calm space and Hollys bedroom. So you can lock/unlock them with a coin from the outside but can’t get locked in. So all our valuables or precious items are locked in bedrooms etc. We also have 2 lockable cupboards.

To some people this may seem extreme but to us it’s just a way of life. We’ve lost so any things to Hollys destruction and not to mention the amount of mess we’ve had to clean up on a daily basis! It’s how we keep sane!

We once had some decorating done and I forgot to get the paint out of the garage. The instructions to the decorator on how to unlock rooms, find keys and coins etc to get to the paint was like something off of ‘The Krypton Factor’! 😆🙈😆

My favourite purchase in the summer was Erik! A lockable ikea cupboard!

And we recently tried magnetic locks on the kitchen food cupboards. I was a bit sceptical but WOW they are amazing! Only worry is losing the magnet which has also been mixed up with a battery powered tealight a few times!!

So Holly may have her superpower but so have we! If you go in for all that! 😆😆😆

If you have a similar experience I do hope that some of these ideas may be useful.

Things we are grateful for (as an ASD parent)… baths and showers!

Yep if Holly is having a particularly challenging day and is over anxious the one thing that will calm her down is a bath!

Holly has always loved water! She loved the bath from being a baby. It’s always been part of the evening/bedtime routine. We’ve never had any problems getting her in the bath but getting her out… well… we had some fun moments usually involving getting soaked ourselves! She also has no idea that somethings just should not go in the water eg the iPad! The phone! Electronic toys… yes we’ve lost a few of those to the bath! If you have seen the tv episode of the fantastic ‘There she goes’ where Rosie has a bath then that is very much our experience! If you missed it I highly recommend it. Here’s a link

There she goes S1 Ep2 Bubble Chess

Holly also likes showers which is lucky as quite often we have to have quick ‘clean up’ showers!

She used to love swimming too and we went to weekly special swimming lessons. We did spend the first couple of years getting in and out of the pool for half an hour with me chasing after her trying not to run!! But after 7 years Holly was able to swim across the deep end of the pool – her own unique style of course! She got a few swimming badges too!

But unfortunately we stopped going – not because of the swimming – the leisure center had a face lift and they changed the look/layout of the entrance and there was loud music from the youth club next to it! Holly just refused to go in the building and laid on the floor. We tried for 3 weeks before I gave up! Holly does still go in the hydro pool at school and we go swimming at the pool when we go on holiday to The Thomas Centre

The Thomas Centre – specialist Autism holidays

Unfortunately Holly’s love of water does sometimes cause issues! She has managed to flood the bathroom and en-suite several times by turning the taps or the shower on full! Always good fun!!

It’s one the sounds I dread to hear when Holly is not in view! 😆😆😆

Things we are grateful for… (as an ASD parent)… Trampolines!

Holly has never really played with toys unless it involved threading, posting, chewing or breaking. Her concentration span is very short and she struggles with self occupying. But she has always loved to bounce!

As a small child she loved to bounce on her bed – that was until she started banging her head on the ceiling!! We bought a trampoline for her when she was younger and she has always loved it. She’s been on it in ALL weathers! With and without clothes! On her own, with other children, with adults and even with the dog!

She loves the trampoline at ‘The Thomas Centre’ where we go on holiday. It’s bigger than ours and as well as bounce she likes to lay on it whilst others bounce. She also likes to post things underneath it and as you can see from the photo it has been dug into the grass so trying to retrieve posted items is extremely difficult!! And it’s usually something you need like a shoe!! 🙈😆

As well as providing physical exercise trampolining is also recommended by therapists. There’s lots of research into trampolines and Autism – I won’t bore you with details when you can just google it. It’s sensory, improves muscle tone, coordination, balance and strength but most importantly Holly loves it! ❤️

For more information about The Thomas Centre go to https://thethomascentre.co.uk/

Things we are grateful for as an ASD parent … the “iPad!”

Prompted to write this today as I had to do something I’ve never done before. I had to go round to a neighbours house and ask for Hollys ‘iPad’ back! Never a dull moment in our house!

Yes this is a photo of Holly on her trampoline. Can you see the “iPad”? No? It was there a minute before this was taken! This photo is taken just after Holly had thrown it over the fence into the neighbours garden! My back was turned for a couple of minutes but from her body language, indication and pointing I guessed what had happened! So I went round to ask. Holly found it hilarious that she could see me embarrassed, stood at the neighbours front door whilst she was stood on her trampoline. Ha ha ha.

There was a moment of panic when I realised it had gone and then again as I stood at the door wondering if anyone was in at the neighbours! What would we do without it!?! We rely on the “iPad”. It calms Holly, it occupies Holly and she loves to listen to the music on YouTube which makes her happy!

Yes I know, all the techie people out there and those in the know – this is not an iPad! She’s got actually a Kindle! But Holly calls it an iPad so we do too! We did have an actual iPad at one time! We’ve been through so many devices/tablets and so we’ve ended up with the cheapest (at the time of buying. Other devices are available!) As long as Holly can listen to parts of her favourite songs, or “moona” as she calls it, on YouTube over and over and over again! – she’s happy! And so are we!

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

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!

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!

Mother’s Day- special or just another day?

Happy Mother’s Day to all the mummies, grandmas, aunties, godmothers, carers, pet mummies, stand-in mummies, teachers, those who support mothers… in fact all you lovely ladies! Hope you’re all having a fabulous day!

I had a lovely morning. Jasmine made me breakfast in bed! Scrambled eggs and cup of tea in my new mug ‘assisted’ by Holly. I received some lovely cards and gifts. Holly made a lovely card at school which made me cry.

She also made a cake, some paper flowers and Jasmine had picked out a coaster to go with the mug and a lovely card.

A nice relaxed, special morning…

It’s now lunchtime. I’m cooking lunch. Hollys already cracked the mug, picked the cork off the back of the coaster and I can’t find the card she made. Most likely it has been posted down the back of one of the radiators! 😆😆😆

A typical day in the Adams’ house resumes…

Ha ha ha! Ah well… never a dull moment! ❤️😆😘

Have a lovely day!

*UPDATE – I forgot that Jasmine also made me this…

I put it safely away earlier so that it wouldn’t get damaged by someone! Question is where can i hang it where it will be safe from the Hurricane?!!

🤔😂😍

Funky Feet!

We have learnt over time to expect the unexpected! Well I never expected I would be spending time at A & E this afternoon!! One of our worst nightmares! I must point out Holly is fine. We went because she has a big lump on the top of her foot. It had got bigger during the day and was red and hot.

Luckily I had some help as the carers were coming. Holly does not do medical appointments very well. She does not do waiting at all! The usual medical rooms are a sensory overload nightmare – busy, brightly lit, noisy, unusual smells etc so I was dreading it! I did explain everything to the receptionist hoping we wouldn’t have to wait long!

Now Holly does have funny shaped feet anyway! She has inherited my high instep. She tip-toe walked for many years and when she got to the stage where she couldn’t put her feet flat on the floor and she started to hunch her shoulders , we followed recommendations that she have surgery to extend her tendons. The surgery three and a half years ago, was traumatic enough but she then had six weeks with both legs in casts!

Holly did really well considering she’d had surgery and couldn’t walk without pain for a time. The biggest challenge was actually keeping the casts on! She did find that she could pull them apart and undo them! (This could have been the start of the shredding!) I never expected to be stood in B&Q asking which was the strongest possible tape? And when asked what it was for pointing to Hollys casts saying “to stick those down and stop her pulling them apart!” Oh I so love duck tape!!!

Then we had some splints with Velcro. That didn’t stay on long! More duck tape!

After the surgery and casts Holly could put her feet flat again but her feet were mis-shaped. That along with the fact that when Holly has a meltdown one of the first things she does is bang her feet hard on the floor. Sometimes her toes bend underneath and the knuckles get scraped. This has happened so often she has corns on her toes most of the time.

So feet a strange shape, back to today. And after two of us literally pinning her down to get an X-ray of the foot and waiting around an hour and a half distracted by YouTube and biscuits we went in to see the nurse for the result and to find out..

Its a bunion! A BUNION!!

(Really NOT what I was expecting!)

😆😆😆😆😆😆

At least it’s not broken! And the carers and staff at BDGH we’re great. I’m am as always so thankful for that.

Window cover project update!

So one of our daily struggles was Holly ripping and shredding her blind and curtains and also pulling down the curtain pole!

So project window cover began. The idea was to use a blackout blind to put up and down on the window. It actually came with suckers on to stick to the window but I couldn’t get it to stay up! So I stuck sticky Velcro to the window frame.

Had to cut it down. It was thicker than expected when it arrived! The blind already had some Velcro on and so decided to use that.

The idea is we stick it up at night and pull it down during the day.

It’s been up a week! It’s working a treat! And Holly hasn’t tried to rip it… yet!

And look how dark it is! This next photo is taken during the afternoon. Holly is on her bed with her ‘ipad’.

🤞it continues!

It could do with shortening but I’m going to wait a while to see if the shredding starts! Ha ha ha.

Delivery – what have I ordered now? … next repair project begins!

So got a parcel this morning and thought .. “oh no! What have I ordered now?!”

A bit of excitement but that was short lived as I opened it to find…

😆😆😆😆 All ready now for our next repair/ damage minimizing project! In my head this should work!!! Holly has ripped and shredded her blind and curtains and pulls the curtain pole down daily so need to do something else!

My idea is to use this blackout blind and Velcro it to the window!!

Well that’s the plan!! Ha ha ha. Then we can stick the blind up at night and take it down during the day. Damage limitation! There will be nothing there to shred most of the time! That’s the theory!!!

Oh I do love receiving parcels even if not very exciting stuff inside. This one is going to keep me busy for a bit – I’ll post the result when completed! (Hopefully!) ha ha ha.

Previous blog on mystery parcels … https://mummy-jet.home.blog/2019/01/13/the-joy-of-online-shopping-or-what-the-thats-not-what-i-ordered/