5 things I have learned as an ASD parent in the last decade.

Ten years ago things were different. I was different. Holly at 4, didn’t have a diagnosis even though we knew she had autism and we got the diagnosis near the end of 2010. Lots of things have changed including us, our views and beliefs. And I have learned so much from Holly. Here are a few of the things that I would like to share…

1. Pick your Battles!

It’s been hard but over time I’ve learned to focus on the major things you want to change/focus on and try and ignore all the little minor issues that in the grand scheme of things don’t really matter, aren’t hurting anyone, not life threatening etc. Also focusing on the positive things always motivates anyone. As a first time parent I wanted everything to be perfect but overtime I have changed and have become more relaxed about the little things. When reacting to the big issues I’ve also learned to do it calmly and quietly with fewer words. This way it has more impact and better than constant shouting and ranting which is actually stressful for the whole family.

We once did some training on the ‘Non-violent Resistance Programme’ and even though a lot of it wasn’t relevant for us, we did pick up some good tips.

2. Listen with all your senses

This has taken years and years of practice and getting to know every little gesture, sound, action, reaction that Holly makes. Communication is extremely difficult especially if you don’t know Holly well. But being observant about EVERYTHING around her as well as her vocalisations and gestures helps. And you have to remember that just because she’s sometimes difficult to understand, she hears, understands and reacts to everything – she will even pick up on your attitude or mood.

3. Accepting Help

I found this so hard to accept at first. Holly had short breaks hours from a very young age, at first 1:1 and then as she got older she was assessed as needing 2:1. Carers would take her out or stay at home with her. I remember that feeling when I first went to work leaving my vulnerable daughter with initially strangers – I was so worried and upset. We’ve had some fabulous Carers and support/respite people but our issue has always been, keeping them! With so many changes in circumstances and Hollys increasingly complex needs it got harder to get carers. But I am so grateful to all those that helped us on our journey. As she’s got older, bigger, stronger we appreciate all the help we can get.

4. Always be prepared for change!

It’s been the pattern in our lives … the battle to get help, services etc. We eventually get somewhere and think everything is going good then bam… something happens- someone leaves/quits, there’s an incident, service withdraws … I think I’ve got to a stage where I just expect the worst to happen and then any positive outcome is a bonus. It’s probably self- preservation as we’ve had so much disappointment and let down. Another of my preservation techniques is to find the funny side or try and find the positive!

5. Be thankful for the support of family and friends.

We are so lucky to have so many amazing friends to help and just be there for us. Not just directly helping with Holly but also supporting us too.

Friends who have stood by us through everything.

And friends we’ve met along the way.

Obviously this is not everything I have learned over the last decade but I’d say they were the major things. And I hope that by sharing these it may help someone else who is either starting or already on their own family Autism Journey. It’s important to remember every child is different and what works for us may not work for someone else. But in our experience, sometimes anything is worth a try!

Wonder what the next decade will bring…

A bouncy, selfie kinda home visit

A mostly good home visit today. Holly was calm and happy. First thing she did was go on her trampoline outside. (Think she’s missed it) She tried to get me and Poppy dog on with her. I decided it wasn’t worth risking any more injuries until I’ve got the current ones sorted! (See blog link below) The dog took one look and as there wasn’t any food involved went back inside! 😆😆

As an ASD parent never neglect your own health!

We had a lovely #MammaMia sing-a-long again to pick up Jas. Then Holly ate lots of lunch. The walk around the village was not so successful as Holly kept dropping to the floor. Not sure why – sometimes its difficult to work out – maybe tired? Maybe cold? Legs hurting? Hungry? Or just didn’t want to? We had a bit of snap chat selfie fun (see photos) lots of hugs and hair sniffing and listening to songs on her ‘iPad’ at home.

After tea, return to her residency- Holly was excited and kept bouncing up and down in her seat- I still find this hard – the journey home was emotional. 😢😍

As a parent of a child with additional needs NEVER neglect your own health!

Those of you who know me well know that I never adhere to this advice!! 🙈😆😆

Like other parents, I always think ‘I haven’t got time to be ill or be unavailable if I have to have any treatment’. And… part of me thinks that if I ignore it for long enough … it might go away!

Well… you may recall a post I published at the end of October half term when I joked that I might have repetitive strain injury from pulling Holly’s trousers up…

Well it got worse, I’ve been in agony the last few months so I actually went to the GP! Turns out it’s tennis elbow! Not that I’ve touched a tennis racket in over 20 years!! Yes I’ve had all the tennis jokes too!! I’ve got a special clasp to wear and on pain killers – let you know how I get on..

Whilst I was at the GP I thought I may as well go with the list… so now I’ve got some tablets for my Raynauds syndrome – had that for at least 2 years! Then I’ve got an MRI scan to look forward to in the new year on my dodgey hip -had that for about 5 years but it’s got gradually worse so much so that some days I’m like an old lady trying to get up the stairs! But at least I’m getting things sorted so when we have our quality time with Holly I’m actually fit and able to do things! Physically fit that is! Heads still a shed!

My Head’s a shed blog post

Christmas … a day of two halves

Our past experiences of Christmas Day have been stressful, difficult and full of anxiety. Holly doesn’t cope well with the changes, the decorations, the presents, the visitors, all eating at the same time and we can never ever have Christmas crackers! It’s been too much in such a short time. So the plan this year… to pick Holly up Christmas Eve afternoon and have her to stay overnight. Then next day do morning and lunch Holly style Christmas – take Holly back to her residency – then do lunch 2 and afternoon Christmas Day for Jasmine.

We did this. Holly was happy and calm when she arrived home. She was pleased to see Jas and Grandad. She ate all her tea and enjoyed a few walks around the village with “Daddy-Tim” looking at the Christmas lights. She mentioned “Santa tomorrow” several times. We were worried that she might not sleep as it was different/exciting but we followed our usual routine of bath, dressed, milk and snack, chill time, toilet and bed. She slept!!! Yay! After we had left the plate for Santa…

Wake up time……… 8 o’clock! Woohoo she slept through. So then Christmas Day version one began. Shower, dressed, breakfast and Holly knew there was something in the living room. We unlocked the door… In for present opening round one. Hollys present opening involves ripping open the paper on all presents without really looking what’s inside. But she take a brief look at a photo book I made for her.

We still had to separate presents as Holly opens them all! We only put Hollys presents in the living room.

See previous blog on presents.

The12 Joys of an ASD Christmas #6 Presents

A few walks before grandparents arrived and more present opening. Lots of clothes and toys and I love this headband.

So full on following her round before we gave Holly her lunch which, unlike the last 4 years, she actually ate! Then before Holly had time to get anxious Grandad took Holly on a drive back to her residency.

Meanwhile we were cooking Dinner for all our guests for Christmas Day part 2 for Jasmine. Grandad returned so we had our dinner, did Grandads birthday cake (made by Jasmine) and… we had Christmas crackers!

We then opened everyone else’s presents and played a few games. A normal Christmas Day which we haven’t done for some time. A fun packed day. Tired by the end but on the whole a success. It was strange and I missed Holly loads but it was a calmer day for everyone including Holly who settled well when she returned to her residential home.

But just managed to squeeze in a bit of alone time at the end of the day … a bit of me time… try new gin time!

Merry Christmas everyone. Hope you all had a great day however you spent it and whatever you did. We all have our traditions and survival techniques! What’s yours?

A ‘Wham’ kinda day

Second home visit today and yes another success! Calm arrival and lunch. Holly brought her “iPad” home and we’ve had a lot of Christmas songs, ‘Last Christmas’ a definite favorite.

After lunch, grandad came so we went for a walk with Poppy-dog.

There were a few anxious moments but on the whole it was better than last weeks walk. Holly even went on the swing at the park for a while – eventhough it was wet! 🙈

Home and a bit more Wham before tea, eggs on toast. The journey back was a little less stressful than last time, Holly still pointing out every “Agaarga” (McDonalds ) on the way! We did have the ‘Mamma Mia sing-a-long all the way! Holly was happy to get back to her residential home, excited to see the fabulous staff and the journey home for me was a little easier than last week. A few Christmas tree decorations unfortunately didn’t make it today but I can live with that and on the whole a great day! Looking forward to Christmas Eve.

A successful First Home visit

So it’s almost 2 weeks since Holly moved into her residential home and today she came home for a visit. I have visited her on two evenings this week so I knew she was ok but we were still nervous about how Holly would react. We didn’t need to worry though as she was very calm on the journey home and when she arrived home she was happy and chilled.

She listened to the usual songs on her iPad, laid on her bed for a while then enjoyed our family Sunday dinner. The Christmas tree took a slight battering / rearranging as Holly wanted to take the decorations off and carry them around. But not too bad.

We went out for a walk around the village with grandad, nanna and “Poppy-dog”. Started off well but it became less joyous as I don’t think Holly really wanted to walk.

After some tea it was time to take Holly back. A little bit of anxiety on the way (could have been because we passed 2 McDonalds and didn’t stop! 🙈) But she was ok when we got there. This part I found difficult. I felt emotional on the way home. I think because I left her. All the feelings from my previous blog came unexpectedly rushing back.

Previous blog My head is a shed

I’m hoping this will get easier. But have to say… a pretty successful visit. Looking forward to the next one.

The 12 ‘Joys’ of an ASD Christmas #1 Shredded Stars

Yes we have shredding all year round it is a reaction to increased anxiety caused by change. Christmas means changes occur and so anxiety increases which causes more shredding.

See my blog on shredding

The Master Shredder

THE Longest Week!

A brief Update on Holly from my last blog

‘My Head’s a shed’ the hardest decision

It’s been a lonnngggg week! And a very difficult week for me for most of it. I really struggled during the week – I was ok most of the time at work in the morning but when I got home it was so hard Holly not being there. I’ve cried a lot!

But with the help of some amazing friends and family I’ve got through it. I am so lucky to have so many amazing supportive people in my life. Thank you to everyone for the messages, flowers, chats, get togethers, hugs, drinks, food! etc.

I have loved the regular updates with photos and short video clips of Holly – they have definitely helped too as she looked calm and happy. The first night Holly struggled to sleep but after that she has slept really well which means she must be settled and happy. We had good reports from school too.

On Saturday we went for our first visit. I couldn’t wait to see her. We were worried that we might unsettle her but we were so pleased. She was calm, happy and very smiley all the time we were there. The staff are amazing, patient, supportive and really are there for her every second.

We took her for a walk to the shop to get her favourite… ice cream! She was lovely. No meltdowns. No aggressive behaviours. It really put my mind at ease. Honestly she was very smiley just not for the photos!!

It was so good to see her like that. It helped. It’s still very strange without her and I still have all the same feelings but there is also hope. I know it’s going to take time for Holly to fully settle and for us to get used to our new way of life ( and honestly every minute of every day is weird!) But seeing her happy helps me to think that this is the right thing for her.

Looking forward to our next visit this week and seeing Hollys progress.

‘My head is a shed!’ the hardest blog I’ve written so far.

This is the most difficult blog I’ve written so far (And I have rewritten it several times!) Not only the subject but we’ve had to make one of the most difficult decisions of our lives. Tonight I feel broken. I feel physically, mentally and emotionally exhausted and ‘my head is a shed!’ I did wonder if this phrase was a Northern thing, a student thing or something made up but several of my friends have used it over the past few weeks so I googled it and according to the wikidictionary …

This has been true for me the past few years, I think, and for the last few weeks my head’s been more like our double garage rammed with stuff – old , new, useful and just crap! You see… after years of struggling to get regular, long term, appropriate support for Holly and us, it was suggested to us during the summer holidays that we might want to think about full time care for Holly. Don’t get me wrong we have some amazing carers and respite over the years but Holly is so demanding and complex, it was never quite right or enough for her. Anyway… It took me a while to come round to this idea and I suppose part of me thought it would never happen as like other things that we were promised actually finding carers/services to provide support proved difficult. A few weeks ago things changed. We went to see a care home and really liked it. It was a bit further away but the place was small, homely and the staff lovely, warm, welcoming and experienced. So we said yes. It then hit home… this is reality… this is really going to happen!… This week in fact!! 😱

Even though I know that this is the best thing for Holly and us, I am now struggling with the whole idea. I’ve cried so much – in meetings, on friends, on strangers! On my own, in the car, in front of people … I have so many emotions and feelings in my ‘shed head!’

I feel a bit angry that it’s got to this stage and it’s that ‘why us’ feeling again! It breaks my heart that it’s come to this and I keep thinking that maybe we could have done something different? But most of all I feel guilty that I am giving up or that I’ve let Holly down. I can’t help it!

But the reality is I’m not sure I could have done things differently and what’s to say that different would be any better? At the moment I feel like I’m letting everyone down. I’m exhausted. I feel like I’m trying to share my time and being a mummy/wife/teacher too many ways. When I’m with Holly she has to have all my attention, every second – no one else gets a look in or they they get the short tempered, short answer, no time me!! I’m exhausted so Holly doesn’t get the best of me either. We also have to think of the future. We’re not getting any younger! And there will come a time when we can’t physically look after Holly (and that could be nearer than we think if things continue as they are!) AND there will also come a time when we are no longer here!

I have to think that it’s the best thing for her. She will have her own room, that will be the same when she goes there and with same staff that she can get to know. She will absolutely love it. She will get someone’s attention all the time. A lovely group of people who are not exhausted all the time, who are there to teach her life skills, be patient with her and get to know her. And the times we will spend with her will be quality time because we will be rested, will have planned something and it will be her time.

Right now though my head can’t cope with it. I know it will take time and I know it’s not like we will never see her again. And we could compare it to any child leaving home, going to residential school or university. But it’s difficult because to us she’s still young and she’s vulnerable because of her learning difficulties she will always need 1:1 support .

So… trying to be positive… we have to see this as a new adventure, a different chapter in our lives. We will have opportunities to spend time with Jasmine and do things we haven’t been able to do, normal things that other people take for granted as well as spend quality time with Holly and as a family. It’s just going to be strange for us for a while. And… I might be a bit strange (well – stranger than usual!) for a while! I might not be able to talk about this or I might just blurt it all out? Not sure how I am going to be for the next few weeks. So please bear with us. ❤️💙

Floods

What a week!! Thank you to all our friends local and further a field who checked on us last week. We live in an area that has been affected by the flooding. Areas in our village and nearest town were sadly underwater. The damage is devasting – people’s homes and businesses damaged by flood water. It’s awful. I really feel for everyone affected and wish there was something I could do. Luckily we remained dry-ish.

We did spend two very anxious days cautiously watching the river just around the corner from us. It did reach the top of the river bank but luckily it didn’t flood our part of the village. I really don’t know what we would have done. Just the thought of having to possibly move out of our home into somewhere that wasn’t ‘Holly-proof’ just fills me with absolute dread! It would probably be easier to stay put but the struggle keeping Holly out of flood water would be horrendous (she loves water – any water! And any excuse to get in it!)

Holly found those couple of days difficult any way. I’m sure she could sense our worry which then increased her anxiety and the meltdowns. On Thursday evening she wanted to go out for a ride in the car but I daren’t take her for the fear of us getting stuck anywhere – a risk I wasn’t prepared to take! Add the fact that respite was cancelled again and Holly had a very difficult, anxious couple of evenings. The second evening I had to give in and go for a ride in the car but on a carefully planned route!

The flood waters have now receded and things are getting back to normal. Well as normal as they can be for us. We don’t want rain like that again!! And… This year I will be trying to support local businesses by buying my Christmas presents from the local town and businesses. (Better start now! Not my usual last minute.com! 🙈)