Week 2 of Lockdown

So Week 2 of Lockdown, week 4 of Hollys new placement. It’s been a realllllly long week! Everyday like Groundhog Day for me. But Hollys had a great week and she at last seems to be settling in. School holidays now though so we will see… but she will be going to school twice a week. But even though Hollys settling in period is over we don’t know when we will actually be able to see her because of the Lockdown. I can’t wait to see her and give her a hug. Til then FaceTime will have to do.

But this week I have learnt…

PLEASE STAY AT HOME

Today has been a tough one. Felt emotional at times. The 4 week settling in period for Holly in her new placement is up this weekend. We haven’t seen Holly in person for 4 weeks. Not had a hug or a hair sniff, a sing-a-long or the random kisses. And now because of Covid- 19 and the lockdown we don’t know when we will get to see her. I know this is so difficult for everyone. We miss our families and our friends. I miss my work colleagues and my lovely class of children and their families. It’s so important to STAY AT HOME. The sooner we all do this the sooner the virus will slow down and the sooner we will get through this and get back to normal. We are so thankful for all the fabulous NHS workers and other key workers for everything they are doing. But if you don’t need to go out… DON’T! #Stayathome #protectournhs #savelives #bekind #lookoutforeachother #itsgoodtotalk

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

Week 1 of Lockdown done

It’s been a looonngg week! Week 1 of Lockdown and week 3 of Hollys new placement. So quick update on Hol. I think generally she’s getting on ok although there have been a few difficult days when she’s been unsettled this week. One night particularly difficult It was the night of clapping for the NHS so I was feeling quite emotional after that anyway. Then I started over thinking things, worrying about Holly getting ill and not being able to see her – I didn’t sleep very well that night! We are so thankful that Holly is able to go to school and so grateful to the staff especially Hollys 1:1 support who is amazing. I must also point out that Holly has her own room in a separate unit in the school (as she normally does) which means she is not mixing with lots of other people. School means so much to Holly – it’s routine, it’s where she is happiest. And she needs routine to settle in to her new placement. We FaceTimed Holly yesterday and she was calm and happy. We did a little singing and she wanted to see everyone including Poppy-dog. I can’t wait to see her in person. But not sure when that will be now… 😩

I know for everyone it’s been a strange week. For us too although for us the not going out is not so strange – we didn’t do that much before! In fact my most stressful days were the 2 days I went to work – not because of work (I love teaching) but just the going out! I didn’t feel protected somehow?! And trying to get children to stay 2 meters apart all the time is much more stressful than you think and exhausting!

But on the plus side I have learnt a few things this week… you can cook potato waffles in the toaster and that you NEVER make flapjack without baking paper! 🤣🤣🤣

Keep safe everyone! Stay at Home and take care. But also check on your friends.

A moment of peace and quiet during this scary time

Wow what a beautiful day! ☀️ I was lucky enough to be able to go out for my once a day exercise for a walk with the dog. We are even more lucky to have this gorgeous countryside with lots of footpaths and walks right on our doorstep. It was lovely, so peaceful and didn’t need coat! And as we sat, myself and the dog, on the top of the hill with the birds singing and the sun shining down, it was hard to believe or imagine or the troubles and things going on in the world at the moment. And for a moment the stress disappeared and I could just sit and take in the beautiful world around me ( and I was social distancing! there was no one else there) listening to the birdsong. It reminded me of a blog I wrote last year about sounds here’s a link if you want a read Do the sounds we hear affect how we feel?

Then of course I suddenly started to panic and thought I’d better get back to the house, been out too long, need to watch the news… 😱🙈 oh well it was nice to have a few minutes peace, a short feeling of hope and a short time for reflection. We WILL get through this. And soon we will be able to take those long carefree walks with friends again but omg will we appreciate everything so much more!!

Stay safe everyone. Take care.

#mentalhealthawareness #checkonyourfriends #keepfitandhealthy #backtonature #dogtherapy #soundsofnature #bekind

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! ❤️❤️❤️