Another Mother’s Day

HAPPY MOTHERS DAY! 🌺💐🌷🌼🌸🌹
It’s been a very busy weekend but that’s the way I like it when I don’t want to think about something too much!!
I find Mothers Day difficult as this is my 11th Mothers Day without my amazing mum! So as I at last sit down tonight with a cuppa, for the first time this weekend, I light a candle and my thoughts turn to her.

I also find it difficult as this is the 3rd Mothers Day where Holly isn’t living with us. Luckily as I was out rehearsing and then performing in a show last night with an absolutely amazing bunch of people and so had a fabulous time – today meant it was a ‘Holly day’ – perfect as its Mothers Day!

But it did mean I didn’t get chance to rest and relax – far from it. Holly was on form though and we’ve had a great visit today – we’ve stuck to our usual visit routine – the only disappointment being that the ice cream parlour was way too busy for Holly to wait so we got a McFlurry instead!! I’ve had lots of lovely flowers and cards.

Then to end the weekend we went to watch an incredible performance of Fame at a local theatre on the way home from dropping Holly off – made very special as we knew one of the cast!
I’ve had some interesting Mothers Days but this weekend was brill.


Here’s a link to our past experiences- never a dull moment! https://mummy-jet.home.blog/2020/03/22/a-mothers-day-even-stranger-than-usual/

The hardest thing…

I’ve always said that the hardest thing about being Hollys mum is when she is struggling and she can’t tell me what is wrong! We had one of those days yesterday. Being non- verbal, we have to work out what’s wrong by observing Hollys behaviour but Major anxiety, several meltdowns, self harming and destructive behaviour is heartbreaking.

Even worse when we have no idea why. Is she in pain? Is she ill? Is something really bothering or worrying her? Throw in teenage hormones and it’s devasting to see.
Luckily these days don’t happen often but today I’m still wondering why? Sometimes a good nights sleep sorts it out and quite often we never find out why or what is causing the anxiety. I’m just hoping it doesn’t last long. In the short term all we can do is give her paracetamol and be there for her with lots of cuddles and attention, making sure she is safe.

Here’s an old post about meltdowns Meltdowns

Here is a photo of Holly wearing a mask. This is a big deal for us as she usually just breaks the cords, rips the mask and throws it. She actually wanted this on and kept it on – for a short time of course! 😷😆 Makes me think – is this a development or is she not 100% ??

Dreaded fireworks!

Bonfire Night!! 🤦‍♀️ Holly absolutely hates fireworks. She’s petrified. It’s the fact they are too loud and the noise is unpredictable. Her anxiety has been building up over the last couple of weeks with the appearance of pumpkins. She knows it’s that time of year!


Last night I was a bit hesitant to take her out for our usual McFlurry and drive round… but we went for it!
It is dark now – so different already! But Holly coped well. I was prepared for fireworks starting. Now you may have seen adverts for calming music for pets on bonfire night on Classic FM? Well forget that we went straight in with The Venga Boys – ‘We like to party(The Venga Bus!)’ plenty of bass so the bangs outside were muffled by the booming beat / which of course is predictable to Holly as she does like this song at the moment! 😆 It worked a treat!


So tonight, if Poppy dog is getting stressed with the fireworks – forget Classic FM I’m going straight in with the Venga Bus!!! 🤣🤣🤣

As the summer ends … on a very different six week holidays this year!

So today was our last visit to the ice cream parlour for the summer holidays. Holly goes back to school tomorrow. Yay! Now I am usually jumping for joy at this point as the summer holidays have always been difficult- the lack of routine, the changes and not forgetting that SIX WEEKS IS TOO LONG!!! But… this year… just wow! Holly has been at her residential placement for 18 months now and the difference is amazing especially over the summer. She’s been calm, content, happy and coped with no school brilliantly. Our visits home and out on our little drives to the ice cream parlour have been great. We are so grateful to all Hollys wonderful carers for making this possible.

When I look back to my previous blog posts I can honestly say that times have changed (which I never thought could happen) and this year has been soooo different- thankfully- because I’m not sure my health would have held out much longer. Here’s my blog from https://mummy-jet.home.blog/2019/09/02/back-to-school-back-to-routine-a-happy-holly-a-very-happy-mummy/

I am planning a blog post update in my head but there are still things I find difficult to deal with, mostly the major mum guilt, but I will update you soon on all the positive things that have happened over the last 18 months very soon. 😍 And we will be back at Newfield Dairy Ice Cream Parlour & Cafe in the next school holiday. 🍦

A new party piece?! 🎉Rumination and Pica.

So on our visit tonight we discovered that Holly has a new ‘party piece’! Eat ice cream, regurgitate ice cream into her mouth (Rumination) and then blow it out of her nose spraying everything within a 1 metre radius! 😱🤢🤮🤦🏻‍♀️😆😆😆

Holly thought this was absolutely hilarious but now my car absolutely stinks of regurgitated Sick-smelling McFlurry!! WHEN DO CAR VALETING SERVICES RE-OPEN? 🤦🏻‍♀️🤷🏻‍♀️

The ruminating started about 15 months ago, we think maybe caused by anxiety at Hollys first residential placement. ‘Rumination’ is the ability to regurgitate food that has just been eaten – like some birds and animals do. There can be many different reasons for it including medical conditions but we think for Holly is behavioural, maybe a sensory thing or because she likes to taste foods again. After all she only does it with her favourite foods eg ice cream, yoghurt, hot chocolate etc and she actually makes the “Mmmmm” food enjoyment noise when eating it for a second time! We’ve never seen her do it after eating vegetables! 😆😆😆

Here’s a previous blog about the eating noise https://mummy-jet.home.blog/2019/10/18/the-eating-noise/

Holly also has ‘Pica’ which means she eats non-food items. This can be anything – paper, bits of plastic, plants and even her own hair. About a year ago we thought this was causing the sickness – we thought Holly might possibly have a hairball. After a special barium x-ray investigation at the hospital, we found that she didn’t luckily!

https://mummy-jet.home.blog/2020/02/12/hair-today-gone-tomorrow-or-is-it/

We are hoping that this new party piece might be just a brief passing behaviour pattern which Holly might grow out of/stop doing and maybe something else will take its place or maybe it’s here for a while. 🤦🏻‍♀️🤣🤣🤣

If you would like to know more about Rumination Syndrome or Pica, which both are common behaviours with children with Autism, here are a couple of links/good starting points…

Rumination Syndrome https://www.cedars-sinai.org/health-library/diseases-and-conditions/r/rumination-syndrome.html

Pica https://www.autism.org.uk/advice-and-guidance/professional-practice/managing-pica

WHAT A YEAR!

WOW WHAT A YEAR!
So this time last year we were enjoying a day out watching Jasmine in a show in London. We were in between residential placements after one month of a failed placement and an offer from Hollys current placement. I wrote several blog posts that month as we struggled with a mixture of support – some not always helpful.

The blog attached – I was struggling as I was also ill. Looking back I believe this was Covid.
I had the symptoms and even went the GP with a cough and chest/breathing problems. At this point we were not as aware of Covid and as my fellow parents of children with additional needs know – we’re not allowed to be ill! – we have to keep going!! I remember putting Holly to bed at 8:30 and then going to bed myself.


https://mummy-jet.home.blog/2020/02/03/day-8-update/https://mummy-jet.home.blog/2020/02/03/day-8-update/


To update you on Hollys placement- it’s going really well she is happy so we are happy. She likes all the people there and talks about them all the time. She is calmer and less anxious when we see her. We have a good routine of visits although restricted by the Covid restrictions – pick up and drop off is literally just that. She is doing really well. Better than me really. I still miss her every minute of every day. ❤️ But I know that this is the best thing for all of us and Holly is getting the care and attention that she needs from a team of people 24:7.
Another link to a blog post that I wrote last year. (if you missed it.)

https://mummy-jet.home.blog/2020/02/27/when-rejection-starts-to-feel-personal/

It’s been a difficult year for everyone but at last there is light at the end of the tunnel. I can’t wait to meet and hug my friends. Let’s hope we can all do this very soon.

I always like to finish on a positive so here is Holly looking very happy. Well why not … she has her favourite thing… ice cream! 😃 We’ve had plenty of ice cream this last year! 🤣🤣🤣

Bamboozled … A visit of two halves

So sometimes we have great visits and occasionally we have not so good visits. Sometimes it’s a bit of both!

We had a fabulous morning. Ride in the car to see Grandad – from the car. Then we had a lovely online session with the Bamboozle Theatre Company who provide live theatre experiences for children and young people with disabilities.

Holly was a bit apprehensive at first and look confused. She kept saying “school Monday!” As she related this to school. But after 5 minutes she accepted it and loved it. She especially enjoyed it when the actors said her name and we were amazed at how engaged she was. Ok she didn’t keep still – one minute sat down the next minute up and dancing around the room! She loved the music bits and obviously recognised the songs doing the ‘shoulder shake’. She did occasionally get over stimulated and hit the the table or stamped her feet etc but these moments were very brief. Overall I would say that absolutely she loved it and we are looking forward to the next one. 🥰 Thank you to Hollys school for organizing it and to the Bamboozle Theatre Company. Here is a link to their website and you can also find them on FB. Have a look… Bamboozle Theatre Company

So great start. Lovely visit to the ice cream parlour as usual. Holly also likes a “hot chocolate” which we had too.

A great day. But then a massive meltdown over not being allowed a third yoghurt resulting in a smashed oven door Again! If you follow us you will know this is quite a regular occurrence so no big deal made. We get used to the damages. 🤷🏻‍♀️

2021… time to be positive

So it’s 2021… and I am going to always look for the positives. Today… Mamma Mia, snowing outside, calm and watching for about 20 minutes – ok a bit fidgety on the floor, balancing on knees on the poof, sliding and what you can’t see, slyly taking decorations off the Christmas tree and posting them under the tv unit – along with the knicker elastic she ripped from her pants! 🤦🏻‍♀️😆😆😆
But the biggest positive here … thanks to the hard work of Hollys amazing school staff and residential Carers she is wearing big girl pants! (Not incontinence pads!) woohoo 🎉 #wecandothis #toilettrainingsuccess

#2021LetsDoThis #wewillgetthere #lovemammamia #alwayslookonthebrightsideoflife

The Christmas tree is up!

So I was a little bit worried about Hollys visit today as not only had I put the Christmas tree up but I have also decorated the living room. It was a light cream colour last week and now it’s a dark teal colour! Completely different lighting/feel now! But as usual Holly took it in her stride. Yes she did go to the Christmas tree several times but only kept taking one of the tree decorations off – a handmade blue tree. I had to take it off in the end and put it safe. Holly noticed the change in decor, she pointed to the wall saying “painting” … “mummy”. But she seemed ok about it and it didn’t cause any anxiety which was amazing.

Later our usual trip to the ice cream parlour for raspberry and white chocolate ice cream this week. 🍦

We had a really lovely day.
Favourite word today “very soon” ❤️😍❤️😍

Lockdown 2: Here we go again! Week 3

Isolation and people

This week Holly has been self isolating due to a positive COVID case at school which meant we couldn’t see her. So it was back to FaceTime again. This actually went really well even if it is difficult to have a verbal conversation as Hollys speech is limited and not always clear. We have to also look at her gestures, facial expressions, surroundings and body language.

She was so smiley and happy to see us. She coped really well with no school which shows that she must be really happy and comfortable with her placement and the people there – because with Holly it’s all about the people!

Holly is back to school this week so she gets to see more people that she loves ❤️ and back to routine as things start to get a bit Christmasy!

I have found it really hard not seeing her and struggled a bit. But luckily work has been busy and I’ve got pictures to paint for people. This week we also had a couple of funerals. Really sad. One was someone I had known for as long as I remember. The service was lovely and brought back lots of memories including memories of my lovely mum. It made me think about the people we meet. I believe we are supposed to meet some people.

Some people we know for a long time, some very briefly and there are those who come into our lives, we don’t see them for a while but when we see them again we just pick up the friendship again. We share and take a little bit of every person- a memory, a song, a recipe, a day out, a hobby, a holiday, a good deed, a work buddy, a conversation… All these things help to shape our lives and make us who we are. I will always be thankful for all the amazing people that I’ve met – and some I probably might not have met without our autism journey. 💙

Take care everyone. One more week of Lockdown! ❤️🤗😍

Here’s a link to a previous blog about Hollys speech Verbal or non-verbal?