Dad Does Autism blog checking in

Dad Does Autism blog checking in

It’s been tough going so far this week. I’m trying not to let things get to me, but I’m finding it impossible not to worry. The Dad Does Autism blog is certainly helping me keep my sanity, but myself and Natalie both have underlying health conditions. Obviously there is concern for our own health, but the impact one of us being hospitalised on the kids would be huge.

Obviously it wouldn’t be easy on any children, but the difficulty in understanding and communicating, means Jack at 12 years old will find it as confusing as a much younger child. Unfortunately we’ve had some experience with this. A couple of years ago Natalie fell and hit her head, it quite quickly became apparent things weren’t right. So we called for an ambulance.

Seeing his mum taken away in ambulance convinced Jack she was going to die. I didn’t realise this at first, he became very quiet and withdrawn. I thought it was the shock of what happened, but Natalie came home later that day and we told him everything was OK. Over the next few days Jack didn’t get any better, and started lashing out. We managed to get him to communicate, that he still thought Mum was going to die. It took a few days using PECS and social stories, but eventually he was happy that mum was not going to die.

Talking about coronavirus

We have talked with the kids about the coronavirus a little bit, they knew the reason they were of school. So we told them there’s a chance we could get poorly, but most people get better. Lily doesn’t seem to phased by it, she doesn’t really understand what it means. Jack on the other hand, keeps getting worked up about it. He’s started saying it’s a zombie virus, and we will all be turned into Zombies.

I’m guessing someone’s said something in a YouTube video. The trouble with letting Jack do things on his own, if he sees a video like that, he will take it literally. The BBC news or people joking around on YouTube, Jack has no concept of the difference. So I’m currently trying to convince there’s not hoards of Zombies roaming the Derbyshire countryside.

Trying to cope

As I said, I’ve started to struggle mentally. So I’m now making a concerted effort to get back on track. Getting outside and doing the daily exercise had ground to a halt. So I’m back out there today, playing some sports with Lily. I’ve always liked to play sport, rather then just do what I call mundane exercise. I don’t mind a walk around somewhere nice, but jogging and going to the gym I’ve always hated.

Then there’s my autism blog, it’s certainly been more difficult to keep up the writing, with the kids always at home. I have managed to do a bit most days, but there needs to be a bit more general organisation. So we can all be a bit more productive. Getting the kids to go to bed, and to sleep is become more and more challenging. They just aren’t getting the stimulation during the day to wear them out. Especially Jack, who has been up into the early hours the last few days. We are trying, but being so limited with what you can do, it’s proving difficult.

Exciting things to come

There are a couple of things I am excited about. I have started writing my first short story, that I plan to share on here. It’s about halfway done. It will be the first time I’ve wrote a piece of fiction and shared it with people in over 12 years. It’s exciting and terrifying at the same time, but I’m so happy this autism blog has given me both the platform and the confidence to do it.

Natalie is also planning to write a piece for the website, which I am really pleased about. It will be about how the relationship between Jack and Lily was built, the strategies used etc.. Natalie really is the “expert” with this stuff, I spent a lot of time at work in the early years and Natalie did a phenomenal job with Jack and Lily. She doesn’t have much confidence with the writing side, so with my help with that side, she’s happy do it. As always teamwork is vital to our success. Hopefully that will be on its way soon.

Dad Does Autism

The first week at home with the kids

The first week at home with the kids

So how is everyone feeling after the first week at home with the kids? I know some might have had them home earlier, and some homeschool all the time. But I think for most of us, at least in England where I live, this was week 1. So how’s it been?

Still having problems with Lily’s ear

It’s gone fairly well for us. The only real problem we’ve had is Lily is still complaining of pain in her ear. She seems fine the majority of the day, but come night time it’s a different story. She has woken up crying every night this week. Jack has coped with it really well, a few times he seems to have slept hrough it. 

One time I went to check on Jack he was awake playing on his Nintendo Switch. It was around 4am. I asked him if Lily woke him up, he nodded yes. I asked him if he was alright, he nodded yes again. He was clearly tense, but he was managing to hold it together, which is really good.

Last night didn’t go so well. Lily woke up crying again, and this time I could hear straight away, Jack throwing things around his room. I went to check him and he had a real look of distress on his face and tears in his eyes. I tried to reassure him, but he just threw things at me, I told him Lily was ok, and left him for a few minutes. When I checked he had calmed down enough to be sat on his bed. It was just one disturbed nights sleep to far.

It’s a frustrating time, due to the situation getting a doctors appointment is near impossible, so you speak to one on the phone and they are guessing what’s wrong. She’s on her second antibiotic now. Fingers crossed this one works. The situation is difficult enough, without that added stress.

Things have generally been good

The day times have generally been good, during the first week at home with the kids. Jack and Lily both seem to be enjoying being at home. They’ve had some fun doing different activities. Jack has been a bit argumentative, which was to be expected, but has been calmer than he was during the recent school holidays. We’ve not pushed him with doing school work. He’s never had any homework, so he’s not understanding why he suddenly has to do work at home. So I’ve got a few ideas for him to learn using things he’s interested in.

Lily didn’t do any work the first few days, I thought it right to give her some time to adjust to what was going on. Then she started doing the work by herself. I’ve seen people trying to be teachers, and it’s almost like a competition with some people on social media. I don’t understand that way of thinking myself. I’m more interested in my children’s well being, than I am making sure they get all the work sheets done.

We are lucky to have a decent bit of garden space, so the kids can get out there for a bit of fresh air and some exercise. They’ve been out everyday, with the exception that Jack didn’t want to go outside yesterday. 

I’m doing ok

I’m holding up alright. I am concerned about the effect of a prolonged lockdown on my depression, but I’m doing fine. I’ve actually enjoyed having the kids home for the most part. Ask me if I still am in 3 or 4 weeks, then maybe my answer will be different, but so far I’m feeling good. I’ve been spending a lot of time at home anyway over the past year, so one week without going out doesn’t bother me. If it becomes 4, 5, 6 weeks, then it will be a different story.

The first week at home with the kids then, up to now it’s been pretty good, everyone’s fit and well, and as long as that’s the case I don’t want to complain about anything else. I hope it’s going as well for everyone else. Families living with autism have extra pressures, and this a really difficult time. But it is difficult for all families. So I say to everybody, stay safe and stay well.

How To Get That Self Care Time You Need?

How To Get That Self Care Time You Need?

I’ve mentioned I’ve been struggling the last few days. Well, the last few years really, but the last few days have seen a drop in my mental well being. I took a bit of time out yesterday, which helped a bit. The biggest problem a lot of people have is, how to get that self care time that you need?

We are all busy, and leading hectic lifestyles in our own way. Whether it’s being a carer for children with “disabilities” like me. Or doing that whilst trying to work full time, which used to be me. Just looking after children, whilst juggling a career. Even if it’s just your career you’re focused on, and it’s taking up all your time. It doesn’t really matter. We all need to look after ourselves, and so many of us don’t.

Medication

I have been taking anti depressants for a long time now, at varying dosages. They keep me functioning, especially at the darkest times. But they are not a cure. Nothing has a positive effect like self care does, yet it is so easy to neglect when you are in a negative frame of mind.

So how to get that self care time that you need? I spent a long time prioritising everyone else’s well being. To the detriment of my own health. Last year I realised I can’t look after everyone else if I’m not well myself. I’ve made some progress on that front, but there’s still a long way to go.

Prioritise self care

The single biggest thing anyone can do, is make the decision to prioritise self care. There will be slips, there have been plenty for me. We are all human after all. But you have to keep reminding yourself, why you made it a priority in the first place. For me it was to be in the best possible place, to be able to look after and fight for the help my kids needed. Everyone has there own reasons, you just need to find it.

What you do in your self care time, is entirely up to the individual. There are the popular recommendations like go for a walk, listen to music, have a bubble bath etc…Whatever makes you feel happy and relaxed. Find the time for it.

Couple time on Tuesday

Tuesday was a rare occasion where myself and Natalie actually got to spend time together, and sort of go out. After taking lily to school, we had a spare hour before we had to go to an appointment. I lay on the bed and put my favourite meditation/stress relief video on YouTube. Click here to see it. I can’t relax in the quiet, my brain just refuses to switch off. Natalie was putting these types of video on, the we tried it for Jack.

He found the one I now use the majority of the time. He uses them occasionally, he has to be in the mood and want to. For me, I like to both close my eyes and listens, and also watch the video. It’s certainly helped me find that time to relax, and be able to just switch off. Which is so desperately needed.

The appointment was with Jacks doctor and CAMHS. It was basically just a check up appointment, and it went fairly well. Afterwards we went to the local shopping centre, to get Lily a costume for World Book Day. She wanted to go as a pirate, so that’s what we got.

Making the most of opportunities

We had enough time to get dinner out, which was nice. It’s something we try and do fairly regularly. Opportunities for nights out are few and far between. So dinner dates while the kids are at school is our social life, but it’s better than nothing. I also got some Krispy Kreme doughnuts to bring home, which made Jack & Lily happy.

Anyone who knows me knows I love a doughnut, so I was happy too. There’s lots of things for Natalie and I to be doing at the moment. There always is, but today we made the most of the time we had during school hours. The result is I feel much better for it.