Our journey so far…

There’s been a lot of changes recently and new friends and followers added so I thought a brief update on how we got to this point might be good …. if I can do that for 14 years!

So Holly was born 13 days late by emergency C-section. From 5 months Holly had febrile convulsions which led to a very scary hospital stay and tests for epilepsy.

It was at her 2 year assessment that the health visitor first suggested Holly needed to see someone because her behaviour and speech wasn’t as it should be for a typical 2 year old. As Holly was a first child we were not aware of this and we had 2 month old Jasmine at that time.

Holly went to the local nursery and mainstream school for a year. At 5 she was diagnosed with Autism. With this diagnosis she then got a Statement of Special Educational Needs – it was pre – EHCP! Which meant she could attend a Special School – one of the scariest but best decisions we ever made. Hollys mainstream school were great and did everything they could but it just wasn’t the right environment for her. Throughout this process we were supported by Wendy, an amazing ECAP worker from the council. She was fantastic and I don’t think we would have got over that first hurdle without her. A short time afterwards she was diagnosed with ADHD and severe learning disabilities. Over the years we’ve had the support of many different professionals from different services; OT – Holly has major sensory processing issues, hypersensitive to sounds and smells, hyposensitive to touch and doesn’t appear to feel pain. She is a sensory seeker, she likes to bounce, swing and likes to feel tension. When she was younger she loved fairground rides. We’ve also had Speech and language therapy and tried many different strategies – pecks cards, symbols, Makaton, actions, words, singing all in various forms at different stages in her life! Now Holly uses symbols at school, an iPad at home, but she does also say some words, not always clear but she understands EVERYTHING!

Verbal or non-verbal?

Over the years we’ve tried various actives, specialist groups etc. We went swimming for several years and horse riding for a couple of years.

Horse riding

But over the years as Holly got bigger and bigger the activities that we went to got less and less. Hollys anxiety’s increased so much and so did the challenging behaviour This includes pinching, scratching, grabbing, biting, pulling hair, hitting things, self harm and meltdowns. This year she has got taller (5ft8), heavier and stronger than me. Now over the years we have had many carers for short breaks respite and overnight respite 2 nights a week more recently. We’ve met some wonderful people over the years that we might never have met without Holly and who I’m honored to call my friends and still keep in touch. Also, we wouldn’t have survived without the support of our family and friends. But it’s always been difficult to find and keep carers because it’s an extremely demanding, specialist job.

With this struggle getting harder and harder and the overnight respite breaking down, last summer we made the heartbreaking decision to put Holly into full time care with the view that she would get specialist help from a team of people in an environment that would be adapted for her. Better for Holly. We would be able to visit and see her whenever we want but it would also give us time to do the ‘normal’ things as a family and especially with Jasmine. Things we haven’t been able to do for a long time!

‘My head is a shed’ The hardest decision we’ve ever made.

So that’s where we’re at now. We’re still early stages of a second placement as the first didn’t work out. I miss her so much and it feels like we’re learning how to live our lives again and so it’s very strange. Obviously 14 and a half years is a long time and there were times (especially before social media) when we felt alone and the only people in this situation. We did visit Hollys school and go to a few specialist groups but the children with Autism that we meet always seemed different to Holly- mostly boys and never as aggressive or hyperactive. I started this blog a while ago to see if there were other people like us and with the view that if it helped just one person who was in the same situation then I’d be happy. It seems a long time ago but I remember the early days when we were struggling, the emotions, the stresses but our lives have changed, we’ve changed and I personally think there is much more awareness of Autism than there was 10 years ago and with that more understanding. There’s still a long way to go but it’s better! And I will still keep recording our experiences even though Holly doesn’t live here. Shes still very much part of our family. It’s just a new adventure and a different chapter.

If you want to know more about our experiences then check out our blog. We’re also on Facebook Twitter & Instagram. I do try to be positive and find the fun in what we do – it keeps me going! Stay Strong!

Mummy_jet

What’s in a name?

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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…

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?

A gradual Christmas – 6 years on..

It’s December and the countdown is on!
I used to absolutely dread this time of year at home but I am hoping the calm times continue and this year will be different.
We’ve always had to ‘drip feed Christmas’ and still do. Yesterday Holly was interested in the wreath I made last week at a workshop. She spotted the ‘food’ (orange and apple slices) straight away but she just poked them with her finger. (She did then

lick her finger🤣🤣)

This is massive progress – only a couple of years ago she would have pulled this to pieces! We used to have to put things like this away when Holly was around or just accept that it wouldn’t last! This is down to maturity, change in hormones and the fact that generally her everyday life is calmer and a regular routine, consistency in brilliant staff that work with her daily also helps.
Let’s see what happens next – outside lights next.
So if you’re a family struggling with Christmas- I feel your pain – we’ve been there – but things can change.

Holly sporting the food on my Christmas wreath.

It’s a while since I wrote this post on my blog and feels even longer as we’ve come such a long way since – but feel free to have a read of this and any other posts

A Gradual Christmas

A Colourful Day… a recent behaviour.

So one of Hollys behaviours recently has been drawing on herself. She did it a few times and like lots of things, after a few times it becomes a habit, so now she has to do it every week. It’s now part of the routine when she visits us.

Todays ‘pen tattoos were particularly colourful as I had bought some new pens. She loved all the different colours (especially orange) and she could name some of them. 😍

I do encourage her to write on paper but it then moves to her arms, legs, feet and clothes. We’ve had to stop her when it gets to the furniture and walls – although sometimes she’s too fast! 🤦‍♀️😳

Have to say though her pen grip is so much better 🤣🤣 and I love that she’s interested in mark making at all – it’s took a while! And to be honest I’d rather have this behaviour than some of her other behaviours eg smearing, ripping, destruction. It will wash off!! She enjoys a bath before she returns to her residency anyway.

Prom time!

She did it! Two hours at her prom without any ripping! And she loved it! We are just bursting with pride! And here is the dress! See previous blog post https://mummy-jet.home.blog/2023/05/26/an-unexpected-joyous-event-and-a-shameless-plug/

She looked beautiful. She sat still and let the carers curl her hair and put on some makeup. Of course she didn’t put on the dress until she got to the venue. New Transitions to unknown places can cause major anxiety (more than usual) and subsequent behaviours occur!

She looked amazing and had a fabulous time dancing with anyone and everyone she could persuade to dance with her. She has come such a long way since she first joined her special school when she was 5. It has been an amazing journey with the most fantastic staff who we are going to miss so much! I’m stopping there before I get emotional again! That’s a whole new blog post which I will write when I feel up to it.

In the meantime here’s another photo of our beautiful grown up daughter 💖

Sometimes Amazing Achievements Happen!

I still can’t believe this happened yesterday. A huge achievement for Holly. She was invited to an Achievement Award ceremony. We didn’t know what to expect and we were prepared for just about anything. I even emailed the organizers and said we might not make as Holly might refuse to go in the building!

We arrived late as Holly had to pull a few leaves off the bushes and trees in the car park – it’s an anxiety thing! Then when we got in the building she needed the toilet. So by the time we arrived through the door at the front of the typical university lecture theatre the guest speaker was in full flow. He made the mistake of saying “hello” to us and Hollys reaction was to skip over to him in her usual ‘Miranda gallop’ style, try his pockets, wave and skip out the opposite door! We were following close behind. She must have liked him because she then returned through the door and skipped back across!

We managed to persuade Holly to climb the steps and sit down! On our way in we were given an agenda and evaluation which said if we filled it in we would get a free cup cake at the end, reinforced with pictures of cup cakes! We told Holly this so all the way through she just kept shouting “cake” and pointing to the pictures!

Then came the awards. Another achievement for Holly. Now this doesn’t seem like a lot to the average person but to Holly it’s a huge deal. It’s not GCSE’s or A Levels but it’s a massive achievement for Holly.

When Hollys name was called she went to the front to collect it, skipped across the front having no interest in the certificate or Award! She went so quick I couldn’t get a decent photo.

We then went back out and downstairs. After several toilet trips, biscuits and some chocolate from the vending machine, we returned to the lecture theatre as the last award was being presented and a chance for photos with the guest speaker, BBC presenter, Ashley John- Baptiste. I did manage to get a photo this time as Holly checked out his pockets again!

So so proud of Holly for just going in and being part of this. A totally new experience in an unfamiliar place with unfamiliar people. Super super proud! I think she actually enjoyed it (especially the cake!) And I think we may have entertained/educated a few people about what living with Autism and severe learning disabilities can be like by giving them a little insight into our world. ❤️

A positive day. Very proud parents. Amazing achievements can happen!

An unexpected joyous event! (and a shameless plug!)

It’s been a stressful few months with lots of difficult decisions to make as Holly approaches “adulthood”! But a ray of light shone through when Holly got an invitation to her prom! This may not seem like a big thing but it wasn’t something I was expecting at all – I did cry tears of joy! You see Holly hasn’t always done those events or milestones that happen at school like options, exams etc so it didn’t occur to me she would have a prom.

So imagine my excitement- the dress, the shoes, jewellery? But then… well I am realistic… I know what Holly is like and having just spent a small fortune on her sisters prom dress my thoughts turned to… we’re not spending that much money on something that could last 30 seconds! Those of you who know us well or have followed us for a while – know that Holly is a clothes shredder!

But determined not to be defeated I started to check out Vinted and fb marketplace. I got myself prepared to trawl every charity shop in the area. Then there are those occasions when you just happen to be in the right place at the right time and happen to mention the prom dress.

When we went to pick up the ordered prom dress for Jas I mentioned my dilemma. Sadly the dress shop is closing down and there just happened to be rail of dresses all only £25. You can image my excitement and of course the determination to find one thing that would fit and look ok for Holly – not too fussy, covers everywhere and absolutely no embellishments that would be seen as the perfect invitation to chew or bite off! And… I got one!

I can’t wait for her to wear it – although I might need to take it up a bit so it’s above the floor because I know she will take her shoes off! It might last minutes – it might last all night – Who knows? Just as long as I get a photo before she rips it!

So a massive thank you to ‘Blue Rose Bridal’ shop in Tuxford. And if you are looking for a wedding dress, bridesmaid dress or prom dress I highly recommend you make an appointment and have a look. But be quick – the dresses are going fast.

https://www.facebook.com/BlueRoseBridal

It just shows that sometimes when everything feels stressful these little moments pop up to lighten the load and brighten the day. I will hopefully have a photo of Holly in the prom dress to share with you in July. (Before anything happens to it. I will be taking spare clothes in case too!)

Unexpected Sleepover

Yes those are pajamas and yes we had a sleepover. Unexpected and we were worried Holly wouldn’t settle or sleep at all but she was an absolute Superstar. 🌟
She did wake up a couple of times but slept well in between.

I, on the other hand, didn’t really sleep at all! It’s been a while so I’m out of practice of sleeping with one eye open, one ear listening and one foot on the floor ready to run out the room!! 🤣🤣🤣 Parents of babies, toddlers and children with additional needs know what I mean? And I couldn’t stop watching the monitor – a great invention but I didn’t trust myself to wake up with the noise and I was checking it every 10 minutes.

But overall a success and I think Holly loved it – just look at that smile!
It was lovely to have her here for the night but I’m now ready for a good nights sleep. 😴

Happy Holly-day! or Merry Christmas

Sometimes you just have to do things in a different way. It’s taken me years to realize this. But you need to do things your way and not necessarily follow tradition. Do what’s right for you and your family. This year we decided we were having a Holly- day Christmas Day. We tried to stick to a familiar ‘Weekend visit routine’ but with a few extra bits.

So Holly arrived as normal and at this point she opened a few presents. She did this in her usual way – ripping a bit of the wrapping paper off every one of the presents but not actually unwrapping anything properly – also known as ‘searching for chocolate!’ Ha ha ha.

We did our usual drive to see Grandad in the morning. Hollys favourite food is fish, chips and mushy peas! Unfortunately on Christmas Day the chip shops are closed so we decided to do some from the freezer. When Holly is here we find it difficult to cook properly as all eyes are on Holly and we only have chance to bung something in the oven! So fish and chips all round for Christmas dinner it was!

Afternoon – after the grandparents and aunty arrived and a few more presents were opened we went on a drive to find ice cream.

Bit of a challenge to find a shop open on Christmas Day that sells ice cream.

But we found one!

Breaking with tradition again, as it’s grandads birthday, we didn’t have Christmas cake – we had birthday cake!

A fairly calm day with not much anxiety. One bonus – we didn’t need the communication iPad or symbols much as I wore this dress…

Let’s just say Holly loved referencing the pictures and the Christmas pudding and the presents pictures got a lot of poking!!🤣🤣🤣

We had a great Christmas Day – done our way and most importantly with a happy Holly!

Hope you’ve had a lovely day too.

“Painted!”

Holly may have very limited speech and sometimes I would describe her as non-verbal as a complete stranger would not be able to have a conversation with her. But sometimes her communication is so obvious! And she did make me laugh tonight …

So on our visit to see her, Grandad and myself, we did our usual ice cream from McDs drive thru, then a drive to see the horses. We stopped to look at some horses walking on the road in front of us when suddenly Holly whipped off her shoe, stuck her foot through the front seats towards me, pointed and said “painted!” It only took me a brief moment to realise that she was pointing to her toes and that she had nail varnish on them. But she was so proud of the fact they were blue! 💙😍🤣🤣🤣
#Love her ❤️

Here’s a link to an old blog about Hollys funky feet https://mummy-jet.home.blog/2019/03/13/funky-feet/

Tags!!

So today I emptied my jeans pocket to put them in the wash and I pulled out this lot!
Saturday was a good visit but we had lots of changes of clothes due to toilet training issues! 🤦‍♀️🤣 And Holly hates tags and bows and any embellishments – or maybe she loves them?? I don’t think they irritate her at all apart from the fact she just wants to pull and rip them out!! 🤣🤣 And once she’s spotted them she can’t leave them alone! So this along with the clothes shredding generally we go through a lot of clothes and I sometimes forget to cut the tags out before putting them on.
What can you spot?

The coin is for opening and locking the doors. Here’s a previous blog highlighting why we have locks on our doors https://mummy-jet.home.blog/2019/04/17/destruction-and-damage-limitation/

Covid Fortnight!

Well it finally got me! Although I now realise I did have Covid two years ago too as the symptoms were the same.

It was a long two weeks!!! I have to say it wiped me out totally. The hardest part was not seeing Holly for 2 weeks. We did manage online catch ups a couple of times which was lovely although very brief as Holly couldn’t cope with longer and got over excited. It reminded me of how difficult it was when Holly first moved into her placement and covid first hit.

Here’s a throwback to an old blog post…https://mummy-jet.home.blog/2020/04/04/please-stay-at-home/

It was so good to see her eventually as we followed our usual routine visit. She kept reminding me by pointing (well poking me in the face 🤣) and saying “mummy poorly”!

Have to say I’m still not feeling 100% but much better than I did and even after a course of antibiotics for sinus/chest infection. I ventured out for my first dog walk with Poppy dog today. Just a short walk but I think Poppy dog was happy. Just look at that smile.

So if your struggling with Covid at the moment or just recovering then make sure you take it easy and take care. But thankfully due to the vaccination program we’ve come a long way!!

It seems along time since week 1 of Lockdown 1 but here’s a link to my posts from the first Lockdown https://mummy-jet.home.blog/2020/03/29/week-1-of-lockdown-done/