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
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.
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 💖
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!
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.
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!)
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. 😴
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!
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 ❤️
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?
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.
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!!
Mummy Jet 