One of our greatest discoveries… Holly loves horses

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**Happy proud mummy post**

Holly has had an interest in horses for a few years now. A friend once brought her horses round to our house to show Holly and she loved it!

She wasn’t scared or phased and liked to stroke the horse. We are lucky to live in a beautiful village where there are lots of places to walk – through countryside, along the canal and up the old pit top. On one route we pass a horse. Holly loves to go and see Millie the horse and give her a carrot.

We do this a lot. So much that Holly got a Christmas card one year from Millie the horse. Which made me cry! Such a thoughtful lovely thing to do. I was overwhelmed that someone had taken the time and effort to make a special card just for Holly.

Now, with this keen interest in horses, we were given an opportunity to go to some special horse riding sessions with a special sports group we attended (Holly already went to the swimming sessions – more on that another time!) On the first session the children could groom some of the ponies. Holly stroked, hugged, leaned on and even tried to lick the pony. We were stunned how interested she was and how long she did this (concentration span usually about 10 seconds!) THEN came Hollys turn to ride! I remember turning to one of the adults and saying… “she might not do this part!” “Oh we’ll see. You’ll be surprised!” was the reply. And oh my… we were!

Holly not only got on (with help) but stayed on for the whole 30 minute trek. And she obviously enjoyed it as you can see from this short clip. She waved to everyone and all the other horses in the field.

Since that first pony ride, over 18months ago, Holly has continued to go riding most weeks and sometimes twice a week. She has her favourite horse, Flynn, but she has riden others too, all of them so calm and placid. They are amazing. The staff are brilliant too. Hollys challenging behaviour can cause issues and be difficult but they always make us feel welcome and are very understanding. We feel very lucky to have found such a warm welcoming center and something Holly can take part in.

I have read several times that horses can be therapeutic. I honestly believe that now. Holly changes when she’s riding. She’s calmer and it is probably the only time Holly sits still for half an hour! She has made small steps but to us it is massive progress. She now doesn’t need someone to hold her legs. She can get on the horse almost herself – just needs help putting first foot in the stirrup. She still doesn’t hold on most of the time but her balance is fantastic. Most of all, she is calm and happy – most of the time!

It is one of the highlights of our week, 30minutes watching Holly actually doing something she enjoys. But it’s not absolutely stress- free as there is always that possibility that Holly may just decide to get off mid-ride! Which she has done a couple of times!!! Ha ha ha. We did manage to get her back on a few times but one time she just skipped back to the stables alongside the horse – she was happy!

Thank you to my friend Tracey for taking the time to bring her horses to our house and introducing us to the idea of horse riding. Thank you to the SANDS group that we attended for giving us our first try at horse riding. And Thank you to Sharon, Gail and the team at the Coloured Cob Equestrian Center for everything. And most of all the lovely horses & ponies who are the stars! They are all so lovely.

If you are interested in horse riding in this area we highly recommend https://www.colouredcob.co.uk/

Trying to hold it together

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 WARNING: Serious honest post!

This is me. Trying to stay strong for others. I have good days. I have bad days. I have days where I just want to hide in a dark room and cry! Or it‘s usually when I’m alone in my car! Today was not a good day. Lots of aggressive challenging behaviour! Lots of destruction of things in our home. By the afternoon I was exhausted and me bursting into tears in the pharmacy was … maybe NOT my finest hour!

Our life is so unpredictable and so not what I expected it to be. 

When I became a mother no-one told me that I could be changing my child’s nappies for 13+years! 

No-one told me that my child might never have any sense of danger and we would have to watch her every minute of the day or she may harm herself or others.

No-one told me that I could struggle to communicate with my child and my child would struggle to communicate verbally with anyone. 

No-one said that my child may never learn to play like other children. Unless you count posting random objects behind radiators, threading anything with a hole on to anything else or seeing how many pairs of pants you can put on your arms and legs?!

No-one warned me that my child could have extreme challenging behaviour and attack me or others – pinching, pulling, scratching, biting on a daily basis!

I thought we would have nice things in a nice house but we live in what could be described as ‘The Alcatraz of North Notts!’ But in reverse! We have locks on most of our doors – not to lock people in but to lock our destructive daughter out and to protect the rooms from trashing  or her damaging other people’s property!

No-one told me I may always need to support my child eating as she would never be able to do this independently.

No-one told me I could sometimes feel trapped in my own home because going out anywhere with my child could be too stressful or impossible due to her challenging behaviour! We don’t even go to the supermarket with her any more never mind on holiday! 

Then…  throw in a younger sibling, who wants to do all the normal stuff – go to the cinema, go shopping, go to the theme park etc…. well…. we hardly do anything as a family anymore!

Yes this is us. This is our lives. It’s not what we were expecting. Maybe that’s something to do with awareness but a whole new issue on its own! We cope! We cope because we have some fabulous supportive family and friends. We have some fabulous supportive professionals fighting our corner. 

We survive because when it happens and is working we have carers who give us some respite… a desperately needed break! Because even though we live with all these things that we were not expecting to still be doing with a teenage daughter, we love her and would do anything for her. BUT it is bloody exhausting! And without that break… without that time to rest and regroup … without that time to rescue our home from the constant trashing that it gets … well … then things fall apart!  

And the scariest thing is that I can’t see this ever changing! At the moment… I don’t see any light at the end of the tunnel! Most worrying thing is…  I don’t know how long I can keep up this pace!

Really Not a Fussy Eater!

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Holly is not fussy about what food she eats! Whose food it is! What time it is! Where it is! Or even if it’s actually edible or not!

Not a fussy eater at all! The problem is more that she is always hungry! She can spot the McDonalds sign from miles away! And she will eat ANYTHING! Holly loves pasta (even if it’s not cooked) and ice cream which she will even eat in the snow in the middle of winter! But… she also eats things such as buttons off her clothes and furnishings, snails from the garden, dog treats, paper, clothes … anything! Not just food!

She once ate the bottom off all the strands of the plastic fly curtain so it stopped about a foot off of the floor. Unfortunately it wasn’t that efficient at stopping the flies after that!

At times we have wondered if she has actually eaten these things but then the evidence appears later in the toilet/nappy!

Holly has always made the “Mmmmmm” noise when she eats! So if we hear this and she’s not in view it means she’s either stolen food and is eating it in secret or she’s eating something inedible that she shouldn’t be eating at all!

Holly is brilliant at stealing food. Once, when she was younger and in a big pushchair, we were queuing at the til in Sainsburys and I heard the “Mmmm” noise, turned around to see Holly taking a bite out of a baguette that the lady behind had put on the conveyer belt with her shopping! I was SO embarrassed!

Holly is an expert at distracting you (eg turning the shower on full to flood the bathroom) and then stealing food from the kitchen cupboards. Her favourite thing is taking a bite out of every KitKat of a multipack!

Everyone eats fast in our house! We’ve learnt over the years that if you don’t Holly steals food from your plate and eats it! But Holly now has a rival for her food stealing crown… “Poppy dog!”

And sometimes, I’m sure these two are ‘working together to share the prize!’

The only only thing Holly has never eaten is grapes!

Feeling Inspired

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Wow! THERE SHE GOES! What a fantastic series on BBC4. At last a realistic view of what it’s REALLY like to live with a child with Autism and severe learning difficulties. The struggles! The milestones! The achievements! The feelings and emotions! The strange things you find yourself saying! Those moments where you don’t know whether to laugh or cry! We LOVED it! It was like watching our lives on screen! Absolutely brilliant! AND to know we are not alone meant so much!

So I’ve had a Twitter account for a while where I have shared a few of our experiences and gained several followers. So inspired by this and the wonderful tv comedy drama I decided to join the world of blogging! Arrgghhh! Now, I won’t be writing long posts. I’m not a big reader myself and I prefer to draw. So inspired by @garyscribbler and his #doodleaday I may be doing a bit of doodling too!

Here’s a doodle I did earlier … just to brain storm a few ideas for my posts.

Any of these things look familiar?

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

How to stack the dishwasher with a Holly in the house! (Or just a typical holiday morning!)

This is just for fun! I can do this now as the end of the summer holidays is in sight! 😆😆😆

Your mission…

So mission accepted…

7:30 Dishwasher status – full and clean.

Holly wakes up. Challenge is to get her to go straight to the toilet but she lays on the floor at the top of the stairs head, arms and legs banging. First meltdown because agent Daddy Tim has already gone to work!

8:15 At last… dressed. Having breakfast with intermittent jumps on the trampoline and rides on the swings. Manage to take out a couple of bowls and spoons, 3 mugs and a plate from dishwasher to use.

Next some drawing, puzzles and threading in between more bouncing on gym ball and trampoline.

9:30 trip to the toilet. Unfortunately minor toilet accident requiring clean shorts. Meltdown number 2 as replacement shorts are not the same or possibly not the ones wanted?

10:00 Back up arrives in the form of Agent Grandad Geoff who agrees to take charge whilst I attempt to unstack dishwasher. Mission paused by a naked teenager streaking round the garden. Redressed but not happy, Then the battle to stop the fridge raiding begins!

10:30 Time for a calming ride in the car. Trip to the ice cream parlour with Grandad listening to Mamma Mia … perfect!

11:40 Arrive home nice and calm. iPad is used to distract whilst I sweep then vacuum the trampoline to remove any incontinence pad debris scattered over it from the previous incident!

12:00 managed to unstack rest of dishwasher whilst cooking lunch (or sticking stuff quickly in oven!) Things start to get a bit uneasy as we get hungry. Meltdown number 3 as Holly doesn’t do waiting!

12:30 successful toilet trip before lunch. As usual a race to finish your food before Holly steals it! Then another battle of fridge raiding prevention even though we have just eaten!

1:15 Directed outside to trampoline. A good bounce with intervals of hanging over the garden gate to see what’s happening out front and a push of the doll in the pushchair around house and garden. All closely watched!

1:45 indicates ‘watch tv’ on communication iPad. Five minutes of deciding what to watch and then changing mind with Grandad until I insist on watching Mr Tumble to the end of the program before the next thing! Dishwasher restack has begun! But abandoned when Holly decides to go to bedroom to watch iPad. Have to follow to prevent repeat of the stripping or trashing of room.

2:00 Garden again for bouncing and swinging. A bit of gardening or apple/leaf/flower/fruit picking/pulling! Directed inside before whole garden becomes just a load of empty stalks!!!

2:15 distracted briefly as Holly finds the sun cream bottle and decides to spread it on herself and the kitchen floor, table and chairs. Change of clothes required. Meltdown prevented by promise of a snack.

2:40 A brief moment of calm as Holly lays on swing seat listening to mamma Mia on iPad. Dishwasher – stacked and set off

2:50 Mission complete! Yay!!

And this was in good time! 🙈 There was also lots of pinching, grabbing & constant retrieving things and locking away but overall an average ok day! (For us anyway!)

#sixweeksistoolong #mummy_jet

What’s in a name?

So why call the blog Mummy_jet?

Well Holly didn’t say mummy for many years and yes I know she doesn’t say many words. From an early age she said “daddy” and “baby” which is how she still refers to Jasmine (even though she is now 12!!!) Holly was probably about 7 when she first said “mummy” and it took a while to become part of her regular words that she uses!

And then it became “Mummy Jet” (she struggles to say Jeanette) and daddy became “Daddy Tim” Now… she says it all the time! 😆😆😆 Have a listen…

Communication iPad

Being able to communicate with Holly has always been a struggle. Over the years we’ve tried many different ways of using Makaton symbols and pecs. At 3 years old we tried picture exchange for treats and we’ve also tried a daily calendar, choice cards, now and next boards … we tried them all. And all resulted in the same way – Holly became obsessed with the cards – no matter what size they were (and we’ve tried many sizes from tiny to A5!) Every time they caused major stress and anxiety and they ended up ripped, eaten or for most of them, posted behind the radiator!

So we were thrilled to be given an iPad by Speech and Language Therapy at Easter. Well she can’t post that behind the radiator! And she has tried!! 😆😆 I had looked at different apps and seen some in action at work but I wasn’t sure which to go for? So I was very grateful for the support from SALT.

It’s still early but I think we’ve made lots of progress. Holly actually likes using the iPad which is the first plus point. It doesn’t go on YouTube so she is not distracted (we still have the other one for that). We use the app ‘Grid Player’. It looks like the grids Holly uses at school and a grid we had started using at home.

When we first got it she could find things on it herself even though there were lots of different grids with different things on each. She remembered where they were.

We have now limited the grids to make it easier and made the grids more relevant for Holly.

She seems to be able to find the ‘poo’ button on the toilet grid at the most inappropriate moment usually when we have visitors! And of course she finds it hilarious!

I am amazed how easy it is to adapt. We have now added our own grids showing daily routines, different activities for the garden and inside as well as grids for people, places to go etc and respite have also added some too.

Holly is very good at finding food that she wants on it but the funniest time she has used it was once in the toilet, I was telling Holly off for shredding her pad again and explaining that it made a mess and someone has to clean it up etc – you can imagine the speech! Holly was sat on the toilet, with a typical teenager expression and had found the button saying “quiet” in the singing grid and was repeatedly pressing it like she was trying to shut me up! 🙈🤣🤣🤣

We’ve made lots of progress so far. Our aim is that it will help us to communicate with Holly and her with us and in doing this reduce her anxiety. We will see…

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/

Happy Birthday

So what do you buy a 14 year old with severe learning difficulties and autism for a birthday present?

Well… a doll and full size buggy, a bucket swing, board books, toddler toys and a game with plastic poo – to name a few! 😆😆😆

Not your typical gifts for a teenager but Holly loved them. Every year has become more and more difficult to think of ideas as Hollys development is way below her actual age.

But she has also made so much progress. These gifts wouldn’t have been suitable a few years ago. Then she struggled to use any swing apart from the disability seat because she didn’t hold on. She had no interest at all in dolls where as today she unwrapped the doll, said “baby” and put her in the pushchair.

She loved the new swing. I only said, “what’s outside?” She looked through the window and ran outside and sat straight on it with a big smile. We had many other ingenious presents too. Holly loved them all.

The cake presented its usual challenges (not only as it had to be gluten free) Holly wanted to help herself and even though I tried to keep it safe she managed to distract me long enough to get in the box and grab a handful! 🙈😆😆 We did have candles but not sure Holly liked them and so Jasmine blew them out.

Overall it was a good day. Another birthday! Another year!! 🎂🎁❤️