“Chocolate Biscuit!”

Sorry not posted anything for a while. There’s been a lot going on – I have been doing a play, we’ve had some huge decisions to make re Holly, visiting places, visitors, assessments and then add the recent flooding (I am currently writing something about that) just not had the time and feel like my head is overloaded! 🙈🤪

But this tonight has made us smile. I just LOVE ❤️ the way Holly says “chocolate biscuit” – it starts right at the beginning of the clip – it’s got a rhythm- almost like she sings it.

It still amazes me how she can say this and other long words (like “medication”) but still doesn’t say ‘yes’!?!

Link to a previous post about Hollys speech

Verbal or non-verbal?

What is ‘normal’?

Yesterday I got the chance to have a ‘normal’ day. Holly at respite, rest of the family away, I had a day out with my fabulous friend Katie. We decided to go and see the film ‘Judy’.

Wow! What a film! What an insight into Judy Garlands life and brilliant portrayal by Renée Zellweger. There were moments in it that were quite personal to us – the music- brought back so many memories of our fabulous dance teacher Joyce. We danced to many Judy Garland songs. If you haven’t seen the film I highly recommend it especially if you like musicals, history or films BUT make sure you take your tissues! The ending is heart wrenching! In fact we came out of the film feeling very low! So we decided we needed lunch and retail therapy!! 😆😆😆 Which we did and a lovely afternoon we had! (Finding some bargain boots helped too! 🤣🤣)

Today I keep thinking about is the film and the fact that we really don’t know what goes on in people’s personal lives. There are times in the film where you think that maybe all Judy wanted was a normal life. But what is a normal life? I don’t think our life is normal, we do things differently and really not normal! 🤣🤣 What is normal – maybe our idea of normal is different anyway? But I do know that we have to remember that whatever is going on in peoples lives we always need to be kind!

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! 😆😆😆

Tag team parenting!

Over the years we have done less and less as a family unit. Partly because the girls’ interests have got so different but also because there are less things we feel able to take Holly to. She finds many things difficult: crowds, loud or unexpected noises, strong smells, anything unfamiliar, sudden movements to name a few. These cause major anxiety, challenging behaviour and stress and so we are not going to put her in those situations.

Credit – wonderful mini people in this photo by Minee_Minds

We very rarely do anything together any more. Due to Hollys Autism and severe learning difficulties, one person needs to be with her ALL the time. If you leave her alone for just a few minutes she might cause chaos or be a danger to herself or others. For one person to do this all the time is exhausting. And sometimes depending on the activity it takes 2 of us. But a lot of the time we do the ‘tag team parenting thing!’ 1:1 swapping over through the day. For any special events/occasions one of us takes Jasmine and the other stays at home with Holly. Or we take it in turns so the other can do jobs or go to appointments etc. A typical Saturday is “tag team Saturday”. Jasmine does 2 activities one is 30 minutes drive away and the other 15 minute drive in the opposite direction. Luckily Holly likes this car ride too especially if you’re playing music she likes (mostly Mamma Mia)

So on Saturdays we take it in turns, swapping over each journey so the other person can get some household jobs done (usually tackling the pile of washing resembling the Alps!)

This week is classic tag team parenting. The girls are on half term this week but I am not! Luckily I only work part time. As we have no paid carers at the moment and we can’t just leave Holly with anyone we’re juggling work and being at home – swapping over at lunchtime.

On the odd occasion when Holly goes to respite and we’re not fitting in appointments or jobs that we can’t normally do, or we’re not too exhausted, we do something together. Its rare this happens but we are used to it all this as we’ve always done it. Although this week made me realise something. How much we may have missed out on doing with Jasmine. Yes even though she has lots of hobbies it’s the little things that we haven’t done with her- like sit down and play board games, do a pumpkin trail at a local park, and other local events. This week Hollys respite is cancelled so the trip to a local event together (which we’ve never done together!) won’t be happening. It wasn’t til I asked Jasmine who she wanted to go with and her answer was ‘its ok I can go with my friends’ I realised that soon she will be at an age where she doesn’t want her parents tagging along and will do things herself. It upsets me that we might have missed out on many opportunities to go to and do things as a family.

It’s too late now. You can’t get that time back. We have done our best.

But to end this post on a positive I do think about all the things Jasmine has gained over the years… resilience, a caring nature, an understanding of people with disabilities. She has got lots of hobbies and isn’t afraid to meet new people and make new friends.

The eating noise

Holly loves food. Well I should say she loves eating!! As it’s not always food that she tries to eat! We know when she is really enjoying eating something by the “mmmmmm” noise that she makes. She’s always done it. Maybe because as a toddler we would say to her “Mmmmm this is nice!” We didn’t need to because she ate almost everything! We also said it to Jasmine as a toddler and she used to make the noise too. It didn’t have the same effect mind as she is such a fussy eater!!! 🙈🤣🤣

I talk about the ‘eating noise’ a lot. So here is Holly demonstrating the eating noise.

Here’s a link to a previous blog I wrote about eating in case you missed it or want to read it again.

Not a fussy eater

#Autism #learningdifficulties #eatsanything #asdparentblog

When every day is the same… ish!

Having a bit of blog writers block at the moment! This could be down to several reasons : I’m tired? It’s nearing the end of term ( although two plus weeks is NOT near enough!!) and I’m feeling run down and in need of a rest (children too!) And I do love my job (its one of the best jobs ever – teaching!) but it’s also quite demanding. I’m not feeling 100%! I’ve caught the awful cold/flu bug that’s going around. And let’s face it Mums aren’t allowed to be ill – especially mums of children with additional needs- you don’t get time- and certainly no time to recover!

Maybe it’s because I’ve got other things going on – I’m rehearsing for a play which I am enjoying because it gets me out of the house and I can forget all my every day stresses for a couple of hours. So my mind is on trying to learn lines.

But I think the biggest reason is that every day is the same! Which sounds ideal for Holly – same routines, same activities, same people etc Well sort of the same… things still happen, challenges occur but since we’ve not been horse riding we’re limited as to what we can do.

Lots of riding around in the car, taxi -ing Jas and not much else. Plenty of meltdowns and destruction!

Yes that’s keeping me busy. House is trashed. See my previous blog…

Destruction and damage limitation

The wet weather is stopping us from going in the garden (which is like a boggy overgrown jungle!) So we’re restricted to the house. Which does get boring! I see all the things that need doing/fixing in the house but can’t when Hollys there so it gets me down. Then it feels like the walls are closing in…. not good! I feel the need to escape. Taking the dog for a walk is a brilliant excuse to get out and this cute face always makes me feel better…

So this has been the last couple of weeks… Writers block! No ideas! Today though, as I was telling a dear friend about all this she suggested, why don’t I draw? I’ve not done any for a while… Brilliant! (I do have some fabulous friends!) So I’ve got an idea, which I’ve started – may take me a few days – but my next blog will be all about our experiences of Halloween! Which over the years has been very varied!!! 🙈🤣😱 🎃 👻

Until then I will be finding my happy place with art! And if you know me well you know I LOVE ART! And its impact in schools and on well being and mental health…. oh don’t get me started… that’s a whole new blog!

Is it time to call it quits?

*warning- long honest post!

This is my second attempt to write this. I started on Monday night but became too emotional and overwhelmed by self doubt I deleted it. Then the migraine took over and I had to go to bed. Yesterday I just felt drained and broken! 😩 So trying again today.

If you read my post on meltdowns you may have worked out it was sparked by a particularly bad meltdown whilst horse riding. Which had never happened before! Well we attempted horse riding again on Monday. I figured it couldn’t get any worse!?? But how very wrong I was! Same place she decided to just get off! Then the next 45 minutes were just meltdown after meltdown – in nettles, on the path, lots of grabbing, pinching and pulling my hair, destruction of things nearby, she threw things out of a wheelie bin, threw her hat over a wall, stripped off, shredded her pad. It was constant! The leader took the horse back out of the way. I felt stranded and helpless. If it hadn’t been for a very kind lady walking her dog who helped to persuade Holly to walk back to the yard I’m not sure how long we would have been there or what would have happened?! I am so grateful to that lady as by the time we got back to the car I was shaking and crying. (I cried for 3 hours)

I decided then that ‘that was it’! I was never taking Holly horse riding again! Since then I have calmed down and I’ve tried to figure out why??? I thought she enjoyed horse riding but what triggered the behaviour? It may have been nothing to do with the actual riding of the horse? Maybe something in the environment? A sensory issue? A pain? Bored of the same route? Or just a habit forming? Who knows?

Then I remembered back to something similar which happened several years ago but with swimming! Holly appeared to enjoy swimming. It was always a struggle to get her changed (I turned into ‘mummy octopus’ in order to hold door and get both of us ready!) and then get in the pool and we spent the first two years just getting in out of the pool for the whole of the 30 minute session!! But she liked being in the pool and she did learn to swim – her own style of course! But then one day she just refused to go through the main doors and into the building and had a major meltdown in the doorway. This happened for several weeks and we just went home. I’m still not sure why she did this? Could be because they had remodelled the entrance to the leisure center? Or they had a couple of cake sales in the entrance which was like ‘mission impossible’ trying to get Holly past without her grabbing six buns on the way in! Or it could have been the youth club which played very loud music and was right next to the entrance? Who knows? But because of this we stopped going.

I am devastated at the thought of stopping horse riding. It was the last thing I felt I could take Holly to comfortably on my own and the people there are so understanding and supportive. But she is now taller than me, heavier than me and so stronger than me. I fear for her safety and the safety of others and my own safety.

It’s something I’m thinking about…

Maybe we will take a break for now!

(But I will miss it! 😥)

Meltdowns 😩

*Warning! Serious post *

If I could take away one thing – it would be this. Meltdowns are just awful. I mention them often. I hate them! Tonight we had a particularly bad public one! Recently I’ve seen posts about meltdowns not being tantrums. Yes I agree but, in their defence, to someone who doesn’t have any experience of meltdowns they might look that way! When I think about tantrums I recall that tv advert for ‘Vic’s first defense’ where the child is about to have a tantrum in the supermarket but the mother does instead and the child stops. It makes me smile thinking about it. Unfortunately our experience of meltdowns aren’t in any way amusing. A toddler having a tantrum is very different to a 5ft6 11st teenager throwing themselves on the floor! They can be very distressing for anyone witnessing them. That includes me and when it does happen in public I hate those few individuals who stand and stare with that judgemental expression. So I can see why people get annoyed with that.

I think it’s important to make it clear that Meltdowns are different for different people! This is OUR experience which may be completely different for others. Usually Holly displays warning signs – these are biting her hand, stamping her foot, erratic movements, pinching, grabbing and distressed vocal sounds. But not always. Sometimes it appears to be instant – Calm & happy to distress, self harming and aggression in seconds!

Sometimes we can work out what the trigger is. Sometimes we’ve got no idea! It’s quite often about food eg not being allowed that 18th biscuit!! Or being told ‘no!’ eg “No you can’t empty the rubbish from the bin on to the floor!” Quite often anxiety is the cause.

When the meltdown occurs, Holly drops to the floor, bangs her head, arms and feet on the floor, walls or anything nearby, very hard. She cries and makes distressed sounds, she can strip, rip, break things and if anyone is nearby she will hurt them too. When Holly was a toddler/young girl we could just pick her up, carry her away and hug her but now she’s just too big. Also when she’s in the meltdown she can’t hear or respond to you as she has totally lost control and her senses are overloaded. We’ve tried all kinds of distractions, applying pressure, holding her head etc but these rarely help. So at the moment the best thing to do is just be there for her and wait. The length of time that a meltdown occurs can be anything from a couple of minutes to on and off for half an hour! I wish we could prevent the meltdowns and we do try by avoiding any known triggers but sometimes we don’t seem to be able to stop it happening and it’s almost like Holly has to go through the process to come out the other side! And she appears to be fine afterwards??? We’re hoping hormones might have something to do with it and she will at some point have less frequent meltdowns or even non! 😩 But until then, we will never stop trying to prevent them!

I haven’t got photos of meltdowns, it wouldn’t be fair to Holly and I don’t think it’s appropriate so here’s a nice picture of us! 😊

Back to school = back to routine = a happy Holly = a very happy mummy!

Yay! It’s back to school tomorrow for Holly which means back to routine which means a happier Holly and therefore a much happier Mummy!

I know I moan (sorry) but Holly finds six weeks of school holidays so difficult. It’s just too long! And with the best will in the world we cannot keep a rigid routine going for that long! S**t happens! Life happens! Holly needs structure and routine which means every day the same thing! If not we have major anxiety which causes destruction, damage and aggressive, challenging behaviour! But… we have had success in that we have survived another summer holiday! We’ve had some good days including a holiday and successful respite visits meant we went to a fabulous wedding and a weeks break in Norfolk – which was so needed! We haven’t been out or done much as going out anywhere is difficult as Holly doesn’t cope with different surroundings very well and I can’t then cope with her on my own.

Not too much damage- well radiators off the walls, plenty of clothes shredding, toys broken, a smashed oven door & the grill knob broken off … twice! But that’s pretty good for us! A couple of injuries caused, bruises, bites etc but we are still all in one piece! (Just!)

Have to say though this holiday has been the hardest in that Holly is now taller, bigger, heavier and so I just ache from being pulled around, sat on, dived on and dragged to the floor a few times. Parts of my body are screaming out ‘No more!’ Old injuries have flared up and I’ve gained a pain in my back and shoulder which I really must sort out properly this year! This and the mental exhaustion means I’m so pleased we’re back to routine as not sure how much longer I could keep going. But we survived and what’s more important is Hollys happiness. And she is happiest at school. It’s her safe happy place and I can’t wait to get back to routine and fingers crossed a calmer happier Holly!

Here’s a previous fun post about a typical morning in the summer holidays

https://mummy-jet.home.blog/2019/09/02/how-to-stack-the-dishwasher-with-a-holly-in-the-house-or-just-a-typical-holiday-morning/

#autism #learningdifficulties #summerholidays #sixweeksistoolong #ASDparentblog #honestpost #parenting #SEND #blog