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!

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

Hooray! A little bit of normality…

So when it’s back to school time I usually post this…

This year… oh so different. Have to say with Covid I personally feel anxious but even more anxious about how the whole lockdown/no school has affected some children. Lack of transition, back to routine … I could go on and on. Luckily Holly continued to go to school throughout lockdown and 3 days in the holidays – something we will be forever grateful.

For me this last week has been very strange especially as Holly has been at her residential placement. I’ve not got the usual end of holidays SEN parent exhaustion or the “can’t wait to go back to work for a rest” feeling! Which is nice but instead I still miss Holly. So much. Every single day! It makes me sad and I still feel guilty. But she loves it. She is obviously very happy as she talks about all the people there all the time.

Now we have seen Holly over the last 4 months. She comes for a day every weekend and through the holidays I took grandad over to pick Holly up and go for a drive every week. We’ve had some lovely visits, always entertaining and some ups and downs.

When it’s hilarious to press that one button on your communication iPad over and over.

Ok so on home visits we have to go into our own old version of lockdown mode – we still have all the locks on doors and cupboards etc and we forget and leave the odd thing out that she may eat or destroy! 🙈

This photo taken just before she ate the peanuts out of the bird feeder on the window behind her!

But she usually finds unguarded items with 5 minutes of her arrival and we can remove them! But it’s so worth it. I think she enjoys her visits. She keeps us on our toes and it’s great to revisit those unusual activities and see Holly smiling and laughing.

She’s getting on really well at her placement. She’s settled, looks really healthy and is happy and enjoying life. Now we’re back to some kind of routine with school, placement and visits in place it will get even better. 💗

I just hope this year continues to get better… I really don’t want to go through the last 6 months again!

A Mother’s Day even stranger than usual!

It’s been a strange Mother’s Day as I’m sure it has for most people today. Although the ‘not going out’ part is not unusual for us. That’s been normal every day life, as going out anywhere where there are lots of people is not an option with Holly as it causes major sensory overload and anxiety. I can’t remember the last time we went out for a meal or anything on Mother’s Day. No I found it hard as Holly wasn’t here. We are just getting to the end of her second week in her new placement. She’s had times of being unsettled but on the whole it’s positive so far. I have found today difficult at times. It started ok with Jas making me breakfast and I got a lovely gift and a hand-made card. Then mid morning we had a delivery.

So lovely. Flowers and chocolates from Holly (sent by her carers at her new placement) It made my cry. It was an amazing surprise. How lovely and so thoughtful. I’m so grateful for this.

But I miss both these two so much…

This is my ninth Mother’s Day without my mum and a day doesn’t go by without me thinking about her, missing her and I just wish I could speak to her. It doesn’t get easier. I did wonder today what she would have thought about the Coronavirus situation. I do know she would have put everyone else first and done whatever she could for others. She would be telling me to stay strong and reassuring me that we will get through this! And we will!

So Happy Mothers Day to all you lovely ladies out there, however you have spent your day.

To end on a lighter note. Here is a link to last years blog post – a totally different day! Mother’s Day 2019

Trying to stay positive

So this morning I was determined to stay positive. There’s no point in worrying about things I can’t change or that are out of my control.

But then Hollys school was closed today. Ok I totally understand why and the need to protect people from the virus but the fallout for a child with severe autism and learning disabilities is massive. Add to that the fact that Holly has only been in her new placement for a week… my positive vibes started to fade! Ok we guessed it would happen eventually but we were hoping it would be a bit later so Holly would have a bit more time to settle. School is the place where Holly is the happiest. It’s her constant. It’s her routine. She knows what happens there. The amazing staff know her so well and she knows them. So taking that away when she is still getting used to an unfamiliar place with unfamiliar people is a nightmare. And most of all I feel absolutely helpless as I’m not there. She’s still in her settling in period so we can’t go and see her yet. But I am putting my faith in the wonderful people around her. We can get through this. We still have everything crossed that this will work out.

With self- isolation, rationing and all schools closing now. I know this is so scary and worrying for everyone for so many reasons and I hope you are all keeping safe. We CAN do this. Let’s help each other. Look out for your friends, family, colleagues, neighbours…

So trying to end on a positive note… at least if we are stuck at home I can do a bit of painting, I’ll be writing some cheery positive blog posts AND… I can start on the million and 1 jobs on our “to do when we have time list!’ And trust me that’s massive – 14 years worth of jobs that we haven’t had time for! It’s going take us a while!!! Starting with spare room tidy up! 😱😱😱 😆😆😆😆 (I can hear my friends laughing right now!)

Residential placement Update

I was going to wait a while to do an update but so many wonderful friends have asked, called or messaged I thought I’d do a quick update so far. Thank you to all of you for your continued support. It means so much

So … Holly moved in to her new residential home on Monday after school. The first few days were difficult, as we all expected, she struggled with the change, new placement, new people, new routine etc. She presented with some of her usual challenging behaviours – meltdowns, destruction of property and things in her environment, smearing, aggressive behaviour towards others and not sleeping etc. But Holly has now started to settle and has responded well to her new surroundings, carers, routines and boundaries set. And she has slept through the night which is always a positive sign. Fingers crossed this will continue.

But for me it’s been a long week. I miss her so much. I’ve kept myself busy for most of the week so not had time to think. Tonight I just keep finding reminders of her everywhere- cutters on the floor, yogurts in the fridge, music on my phone, clothes in the washing etc.

Then to add to all this… the worry of the Corona virus. I’m trying not to think to deeply about this, I know it’s worrying for everyone but I keep thinking… What if she gets ill? We’re not there. What if we have to self isolate and that delays our time when we get to see her again? What if schools close? Will Holly cope? So many questions. But we just have to take one day at a time, call everyday and check she is alright. And the staff are brilliant and doing an amazing job. They just get Holly already which means so much. And the settling in period, I hope will go fast, then we can visit Holly… can’t wait.

One day at a time. I will update you all again soon. Thank you for your support.

Our Cinema Experiences

This popped up on my timeline from 5 years ago!!

We hired the local Savoy cinema to take Holly to watch the Peppa Pig movie… at 9am on a Sunday morning 😱 – they opened specially for us! ❤️ They charged us a reduced rate as it was a very short movie and we didn’t need the party room or anything. And there was only 4 of us. It was the most Holly could sit to watch something (and still can)

But it was perfect. It was quiet, not at all busy🤣🤣 Holly loved it and Jasmine tried out every seat in the room!

They even gave us a big cutout Peppa which was knocking around our house for a few years!! 🙈😆

We have tried the cinema on one other occasion, a special screening but we didn’t last long and left leaving a huge ring of popcorn around where we were sitting! 🙈🤣(sorry!)

But the whole experience of our early Sunday morning visit was great and proves there are still kind people willing to go out of their way for others. We will always be grateful for this and the wonderful memory we made that day. #asdparentblog #autism #learningdifficulties #alwaysbekind #makingmemories #kindness

We made it! London! West End! Yeah!

You may have read in a previous blog that we were struggling to get respite and we had a few things booked that we really wanted to attend. Things that really were not appropriate or impossible for Holly to attend. One was a trip to London to see Hollys younger sister Jasmine in a one-off show. Well Tim and Jasmine came down yesterday. Luckily Jasmine could sort her own hair and makeup or that might have been interesting! 😆😆😆 This is our star all ready at the theatre this morning.

I came down this morning/afternoon, my amazing friend driving me most of the way! Katie is an angel and the greatest friend. ❤️❤️ 🥰

Luckily, with help from a lovely lady on the council, we found some great carers to have Holly for a long day. Have to say, last week we really weren’t sure. 🙈 And one of us wasn’t coming. But we made it. Woohoo!

Very excited. Fingers crossed all is well at home. Time to sit back and enjoy.

Long journey home afterwards but it’s worth it! ❤️❤️❤️

When rejection starts to feel personal

We were offered short breaks support when Holly was very young. At first 1:1 and then later 2:1. Now it took me a couple of years to feel comfortable with this- well I say that but not sure I actually feel completely comfortable with it at all! I will never forget that feeling of leaving my vulnerable, autistic child with learning difficulties with a complete stranger!!! But over the years it’s got harder to keep up the intensive 1:1 full attention that Holly needs without becoming physically and mentally exhausted. So any help at all became very much appreciated.But over the years we have had many many carers. So many that I can see the signs that they’re going to leave or quit way before it happens now! The little gestures, the reactions to Hollys behaviour, the odd comments. I know it’s coming!! The “sorry but we are going to have to withdraw our service … we are no longer able to keep Holly or our staff safe … we don’t think our service is appropriate… etc … etc” I’ve heard all these phrases or similar for the last 10 years! Which ok I fully understand. Yes it’s bloody hard work! It’s relentless! It’s physically demanding and mentally demanding as you can’t let your guard down for a second! But having so many people quit or move on it does start to feel personal. And I have had thoughts like “Nobody wants her”, “Nobody cares about her”etc.

Now don’t get me wrong I admire anyone wanting to go into this line of work and we have met some absolutely amazing people/carers too who have moved on for other reasons, some I am honoured to call my friends. And I always say the good ones always pop up again! There are a few people that we have met several times in different places or under different guises. And some we still keep in touch with. ❤️ I personally think that generally carers are undervalued and most definitely underpaid! Lets face it… to look after Holly I think you sometimes need danger money! The people looking after Holly need to be specialists in certain areas – we know – you can’t just ask anyone to look after Holly. They need to have a certain personality, resilience, patience and a caring nature, they need learning disability and autism training as a minimum or it just doesn’t work (we know from Experience) And if you need 2:1 you can’t just expect anyone to just turn up. We know from experience that it has to be two people who already get on (or at least know each other!!) as Holly will sense the divide before they start!

Now we’ve struggled the last few years to get any carers at all. That’s how Holly ended up in full time residential care. That all went wrong and now she’s home again. Something else that didn’t work out.

What is really sad is that Holly makes attachments to some of these people so she mentions different peoples names mostly I think the ones that she liked or she misses and this also includes other children she’s got to know at respite. Occasionally we find a photo of a carer and she’ll say their name and then “momoger?” which means ‘tomorrow’ and then of course we have to explain that she won’t see them.

I think we’ve had that many rejections, refusals and let downs that I am now very wary of any help- carers, placements etc. And when we do get new carers or placement interests I can’t get my hopes up until I know they are definitely working or happening.

LATEST UPDATE – Good news! Holly has a new placement starting in a few weeks and even though I know this is the best thing for all of us and this is different placement , in the back of my mind I can’t help but think we’ve been here before and I feel anxious that it’s going to fall through again. I know I’ve also got to through all the emotions again like last time. (See link to previous blog at the end) But I have to be positive and believe it will work. The staff are lovely and are already working hard to get to know Holly and make it work. For Holly it’s the people who are important. She’s interested in them, she wants to get to know them. I suppose over the last 10 years all we’ve really wanted is people to accept, understand, get to know and just like Holly ❤️❤️❤️❤️

I’ll keep you all updated.

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