What does caregiver burnout look like?

What does caregiver burnout look like?

It’s a phrase that I hear quite a lot, and after a weekend where I really felt burnt out. I thought I’d look at the question, what does caregiver burnout look like? First of all, I’ve never viewed myself as a carer. I’m just a dad looking after his kids, the way any good dad would. It is safe to say I feel burnt out at times, but what do people mean when they say that? How do you know if you or someone you know is feeling this way?

Answering the question

If you google, what does caregiver burnout look like? The first answer you will see, looks like this.

What does caregiver burnout look like?

“A caregiver with burnout has become overwhelmed and is physically, emotionally, and mentally exhausted from the stress and burden (I don’t particularly like the word burden, but these aren’t my words) of caring for their loved one. They may feel alone, unsupported, or unappreciated. They often haven’t been taking good care of themselves and may be depressed.

I have made all the important words bold, these are the things you need to look out for. Whether it’s for yourself, because if you like me, you don’t notice the signs until they are on top of you. Until they have become a problem, and as with anything it is better to work on preventing it happening. Than to react one it has happened. Or if you know someone who is a caregiver, a family member or friend. Then look out for these signs for them. Most caregivers I’ve come across rarely ask for help, but I assure you they probably need it. Even if it’s just checking in on them for a chat, you can make a big difference to how they are feeling.

Not taking care of yourself and depression

I am diagnosed with depression, and my battles with the condition date back long before the kids arrived on the scene. There have been some difficult times, especially with Jack when his behaviour have been out of control. When we had massive problems at his old school, where quite frankly he was neglected, you can read about that in more detail by clicking here – “Our Special School Horror Story” so the situation has certainly made my depression more difficult to manage, and my self care can become non existent.

I try to remind myself that to be the best I can for my children, I need to look after myself first. It can be difficult though, there is a lot of stress involved. Different carers have different stress, for us at the moment a lot of the stress revolves around school, and not being completely sure what Jack and Lily’s capability’s will be as they grow up. It’s also about keeping anxiety and meltdowns in check, whilst for others the demands are more towards physical care. No matter what it is, the strain physically, emotionally and mentally takes it’s toll.

Feeling alone

The major thing that often affects cares, is the feeling of being alone, unsupported and unappreciated. This happens to varying degrees, in all different directions. I’ve heard stories of people having their families completely turn their back on them, or one of the parents walking out and leaving the other one to do it all alone. Thankfully this hasn’t happened to us. I don’t know that everyone in our families fully understands the situation we are in, it’s difficult too unless you’ve experienced it yourself. They have all stuck around and been supportive though.

We haven’t had any issues of people being openly “jealous”, and complain we get money just to stay at home. Which I know is something that happens a lot. As for unappreciated, the £67 a week carers allowance we get, doesn’t scratch the surface of what it would cost if the people we cared for we’re taken into care. Depending on the needs of person it can be thousands of pounds a day!

The current Covid-19 pandemic has shown just how unappreciated carers are. Suddenly all the services stop, leaving us to care 24/7, and we are pretty much the only group of people not being offered an extra help. Once again if you know a caregiver, show them a bit of appreciation, and support them if you can. It could be the little lift that keeps them going.

Feeling overwhelmed

What all the above boils down to, and what for me really answers the question, what does caregiver burnout look like? Is the feeling of being over whelmed. This past Saturday I felt completely overwhelmed, I’m not really sure where it came from, but it was a really difficult day. I struggled with everything, and to be honest I spent most of the day doing nothing but be grumpy and snappy with everyone.

Being cheered up by the kids

The only time I cheered up was when Lily got me playing what’s in the box? Thankfully I felt a bit more myself on Sunday, then Jack asked to go out for a walk and pay PokemonGo. Normally it would be a 20-30 minute walk around the block, but Jack was feeling especially adventurous. We went to a small nature reserve near us, and decided to venture as far as we could. Things got interesting when the path was cut of by a stream, which had some broken logs across it as a bridge. There was at least a 1 metre drop down to the other side.

Jack wouldn’t be deterred so we got across and kept going. Eventually the path became completely over grown and we had to turn back, much to Jack’s disappointment. It’s obviously not been used much. Getting back across the stream was a bit more interesting, but we just about managed it. We saw a frog hopping about, which Jack was fascinated with. On the way back, we saw some horses, which Jack also enjoyed.

We had a great time, and it’s the sort of thing I definitely want to do more of. I was tired when we got back, but after a 30 minute rest. I suddenly realised how much better I was feeling. And therein lies the conundrum, the people we care for may well cause us worry and stress. Plus a whole load of other emotions, but they can also be the ones that make us so happy.

Show support for carers

Right now people are showing great support to our NHS staff, carers and key workers. I just hope that when this pandemic is finally over, people don’t forget the importance of all these people. Obviously I’m looking at carers here, people who are often unappreciated and looked down on. Show these people the support they deserve.

Dad Does Autism

I’m feeling so tired

I’m feeling so tired

For the last 2 or 3 days I’ve been feeling so tired. Perhaps it’s a turn in the weather, we’ve had lots of lovely sunny spring days during this lockdown. This week however it’s been more like the British dull, grey and drizzly weather, us Brits know only too well.

Perhaps it’s the lack of Vitamin D, and not getting outside as much. Leading to an even greater feeling of isolation than previously, but I’ve been feeling so tired this week, and really struggled for motivation.

Annoyingly 3/4s of this post appears to have vanished, and I’ve not got it saved anywhere else 🤦‍♂️

Feeling so tired

There was at least another 7 paragraphs, talked about the difficulty and demands on parenting autistic children. I don’t think I can remember well enough to write it all out again, even if I wanted to. To be honest I don’t want to, the tiredness probably had something to do with me messing the post, and i’m feeling a bit dejected about it.

I’ll quickly say the two main points, that are proving difficult, and taking my energy. Jack’s routine. Dinner has to be at 12, and Tea has to be at 5. If it’s not he gets annoyed, sometimes angry. With Lily it is the demand for attention. All the jobs I would normally do when the kids are at school, I’m finding difficult to do, as Lily always wants you with her. I will just have to keep plugging away and do what I can.

I also went on to talk about playing in the rain, but I will now do that in a separate post tomorrow. As I have plans with Lily to get the waterproofs on and go for a long walk in the rain tomorrow. Assuming that it does actually rain that is.

Dad Does Autism

Self Isolation Questionnaire

Self Isolation Questionnaire


Today’s post is a sort of Self Isolation questionnaire. I was never much into blogs before I started writing my own, but now I read a lot of them. There are lots of good stories and ideas out there. One thing that really interested me, was a blog post titled 40 self isolation journal prompts at the blog Our favourite jar. Ive narrowed it down to 25 question, which I will be providing answers too. To see the full list 40 head over https://ourfavouritejar.com/, that’s where the inspiration for this post came from, there’s lots of other great posts to read as well.

I’ve never kept a journal or diary, but in a way this is my diary. Not every post is about me, what I’ve been doing, or how I’m feeling. But this is the only place I keep record of those things. That’s why I’ve decided to answer the questions here. Feel free to use the questions yourself, i think it’s a worthwhile exercise, which is why I’m doing it. So, on with the questions

Self Isolation Questionnaire


1. How long have you been self isolating now?

We started when Boris Johnson made the announcement. A quick google tells me that was March 23rd, which makes it 37 days as It writing this.

2. Who are you isolating with?

My partner Natalie and our 2 kids Jack and Lily.

3. Are you still working?

No. I actually left work in March, it wasn’t related to Covid-19.

4. How are you feeling today?

I’m feeling pretty good. I did quite a bit of cleaning today, and rewarded myself with a couple of games on Madden 20 on the PS4. It’s the first miserable rainy day I can really recall since this started, so I’ve left the kids playing on their games while I got on with the cleaning.

5. Who do you miss?

Our Sunday routine for as long as I can remember, has been I take Jack & Lily to my parents while Natalie goes to work. We are video calling my parents to keep in touch, but all 3 of us are missing the visits. Especially getting to play with their dog Mack.

6. What keeps you going?

When things start to get on top of me, I try and get a bit of space and listen to some music. Music has always been a very important means of escape for me.

7. What events are you missing out on? How do you feel about it?

Currently we haven’t missed out on anything that was planned. We do have a holiday booked in August, in Devon. We’ve only paid a deposit so far, and they’ve informed us we would get a refund if they are closed due to lockdown, or we could choose to move the holiday to next year. We are keeping the options open for now.

8. How did you exercise today?

Vigorous cleaning was the sum total of my exercise today. Normally it’s been playing sports games in the garden with Lily, and some days going for a walk.

9. Have you had to go shopping?

Natalie has done the main shopping, as she normally does, and she is doing it for her parents as well, who are both in the high risk group. I’ve been to the local shop a couple of times when we’ve ran out of milk.

10. How are you keeping in touch with people?

As I’ve mentioned, video calls to my parents, then I’m on a WhatsApp group with my closest friends. Then using social media to communicate with everyone else.

11. What is on your to-do list today?

I don’t have one.

12. How are you coping emotionally?

I’ve been up and down, but mostly up. I have long term depression, so I was worried how I’d handle this situation. Overall I’m doing ok.

13. How is home schooling going?

Hit and miss. Lily quite likes doing the school work…when she’s in the mood for it. Jack not so much.

14. What would you do right now, if you could do anything?

I would go for a nice walk in the Peak District with the family, followed by a pub lunch.

15. The first thing you will do when we are released?

Not much. I don’t think I will be rushing straight out to be honest.

16. Has this time made you change your mindset?

Not really, it has more reinforced my mindset. The need to slow down and focus on family, which is what led me to leave work. I would have been classed as a key worker, if I’d still been at work, and would have been expected to continue working. I have huge respect and admiration for all the key workers out there, but I’m glad to be at home putting all my efforts into my family at this time.

17. How do you deal with difficult days?

If it’s the kids having a difficult day, just put the extra effort in to make them entertained and happy. Get some games on the go, try and get everyone doing something together.

18. Do you avoid the news?

Yes! Like the plague, and that’s 365 days a year. I figure if anything important is announced, I will hear about it.

19. One thing that made you smile today?

Reading a new book with Lily, it was called the Zoo bet.

20. How are the children dealing with it?

They have been up and down. It’s not been as bad as I might have feared. Jack has delayed processing, so issues might arise later on, but up to now he’s coped fairly well considering his routines disappeared overnight. Lily has started to get bored revelry, and is missing her friends from school a lot.

21. What have you done that you wouldn’t normally have time for?

Stuff with the kids. They are quite demanding, so other jobs I’d like to get on with, aren’t always easy to get too. I have managed some time for it, but of my time is spent entertaining the kids.

22. Have you kept a list of things to do once this is over?

No, it’s perhaps something to do though. I think we will all need some things to look forward too.

23. Do you feel closer to people even with the distance?

Strangely, yes. I guess as most of us don’t have much to do, we are all talking to each other more than normal. Whether that’s phone/video calls or messages.

24. Have your political views altered in any way?

No.

25. What has been your self isolation highlight?

Our kitchen sink got blocked. I’m not known as a DIY handy man, but I managed to take the pipes apart, clear the blockage and put it all back together again. It was a proud moment for me.

That’s it for the self isolation questionnaire. I hope you enjoyed my answers and why not have a go at it yourself?

Dad Does Autism

The positive things

The positive things

I know it’s easier said than done, but it’s really important to look at the positive things at the moment. I have been up and down myself, which is why I decided to write this post. So I can myself focus in on some of the positive things that are happening at the moment.

The first and most obvious thing is, having lots of time to spend with the kids. Now of course it’s not all roses and sunshine, but for the most part I’ve enjoyed it. Watching Lily do her art, baking cakes and playing some board games has been nice. Lily’s latest creation is this lovely blue and green penguin, made from a plastic bottle cut in half. Then wrapped in newspaper and painted. Then stuck on some googly eyes and cardboard wings.

Penguin

Getting outside

Before I hurt my foot we were playing lots of sport in the garden, I think I’m just about fully recovered now, so we can start doing that again. Getting Jack outside in the garden is still hit and miss, but he’s getting out enough that’s it’s not a major problem. Jack and dad time has largely been about watching movies and snacks, with a bit of Lego building thrown in. We have been on a few short walks. Jack doesn’t want to go everyday, but again he’s going enough for it not to be a major concern.

I’ve also had a couple of walks, where it’s just me and Lily. Both kids like to have their own time with us. We live in a small village, so we are surrounded by fields and a lot of animals. There seems to be a lot of horses round us, which Lily loves. So we walked up to take a look at some of them, which was really nice and Lily loves it.

Lily and horses

I’m not a hardcore environmentalist or anything, but I also think it’s quite nice that everything has slowed down. I’m sure Mother Nature is taking some deep breathes of cleaner air at the moment. Obviously things can’t stay like this, but I do think there is a lesson to be learned regarding slowing down, and what people’s priorities are.

Friendships

It’s been a very interesting time for friendships. I’ve had a lot of friends and acquaintances over the years, from school, college, football teams and work. There is only a very small group of friends I stay in contact with regularly. At the start of the lockdown we were talking a lot, as we all processed what was going on. It’s slowed down a bit now, as o think everyone has settled into a bit of a routine with what’s going on. But it was good to have friends there, helping to keep each other going.

Jack and Lily are both missing their friends from school. It used to be said autistic people cant make friends, which is absolute rubbish. Both Jack and Lily crave friendship. None of Jack’s friends from school live anywhere near us. But Lily has seen a couple of her friends around and has been able to say hello. We live close to the local shop, so when we are in the front garden we see lots of people.

Lily saw her best friend/boyfriend, and his mum took this lovely photo of them waving to each other over the garden fence. You could see how much they wanted to be able to play, hopefully they will be able to soon. It is lovely to see how strong the friendship is.

Waving the positive things
waving, with Jack sneaking in the photo in the background

They are a few of the positive things I could think of. Have you had any positive experiences come from this pandemic? We’d love to hear about them, so feel free to let us know in the comments.

Dad Does Autism

Getting creative

Getting creative

If this isn’t your first time reading one of my posts, you’ll probably know that Lily loves her art. She enjoys getting creative, and she’s been doing a lot of art whilst being off school. You can’t just keep drawing pictures though, so we’ve been looking at different things to do.

One thing she has enjoyed doing, is blow painting with straws. She did a really nice one of a dolphin that cut out of card, and put in a sea background. It was so nice it deserved to go in a frame. Though we haven’t yet settled on a place for it to go in the house.

Dolphin painting

That one was very precise, with a picture in mind. She then did another one, which is a more traditional blow painting, which I also really like, again there is an animal cut out of cardboard in the corner. I think it’s supposed to be a dog, Lily doesn’t seem too sure herself. Oh well it adds to the intrigue.

Blow painting


Finally we come to my favourite piece, and something completely different.

Branch art

A small branch decorated with leaves that have been cut out of paper and coloured in, then attached using string. Then we’ve used the string to hang it in pride of place on the upstairs landing.

Lily really enjoyed doing these, and we are looking at other things to do. The next idea we have is some paper roll animals which should be fun. I am always a big supporter of getting creative, and not just for children, adults too. I find it an extremely important part of maintaining my mental health.

As always Lily would like to know which one people like the most, so if you can comment your favourite below it would be really appreciated.

Dad Does Autism

Spending time in the garden

Spending time in the garden

Spending time in the garden is always nice, right now it’s a lifesaver. Something I had planned to do this spring, was finish the garden. At one time it was an overgrown mess, but last year with the help of my parents, we got it looking pretty good for the most part.

This year I want to keep on top of it, and finish it off. The one major obstacle, other than me possibly breaking my big toe (click here if you haven’t read about that calamity yet) is we have bramble growing out from under our cherry blossom tree, which is proving impossible to get rid off. So I just need to try and stay on top of it.

Our garden

Things have started growing and flowering over the last couple of weeks, which has been a welcome sight, when the garden is pretty much all we get to look at most of the time. Some plants have still got a lot of growing to do yet, and a bit of weeding needs to doing. I’ve put one new plant in this year. I would like to fill a few more of the bare spots we’ve got.

I want to get Jack involved in helping me. He enjoys the allotment and growing stuff at school, but as is often the case, that is a school thing. So when you ask him to do it at home, he says no that’s for school. Which is why I chuckled when they sent school work home. Unsurprisingly he’s not accepting it if you say it’s school work. So I’m trying to get him doing learning stuff, without ever mentioning the S word.

Garden 2

Despite my injured I got back it there and did a little bit of gardening. I was careful not to over do it, my foot is feeling better, but my big toe is still a bit sore. Fingers crossed it will be back to normal soon, spending time in the garden is the most enjoyable thing at the moment. Whether it be the gardening, playing with the kids or just relaxing out there. It’s so important for my own mental health, as it is for everyone in the family. The most eventful things that has happened is the kids letting the Guinea Pigs our on the lawn, which led me to think one got stuck under a tree root. Thankfully the she was just hiding and got out by herself. Still it had me stressed for a bit.

Guinea pig under root


I even ventured out for a little walk today, as Jack asked to go for one. Considering the problems we had with just getting him outside last week, I didn’t want to say no. We didn’t go far, just 30 minutes around the village. It was nice though, we took it steady and it was nice and quiet. So overall it’s been a positive day. Have you been making the most of your garden? If you don’t have a garden, what do you instead? Make the most of your once a day exercise allowance?

Dad Does Autism

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

FGTeeV giant TeeV review

FGTeeV giant TeeV review

Something different today as I’m doing a FGTeeV giant TeeV review. I’ve been feeling much better since my last post. The weather has been decent, and a bit of time in the garden has been good. But today I want to talk about the fact that, Lily loves FGTeeV, if you don’t know what that is, it’s a channel on YouTube. As seems to be the way with kids these days, YouTube is where Lily finds her entertainment, and her favourite celebrities.

We decided at the weekend to get Jack & Lily a treat each to cheer them up. Like I’ve previously mentioned, we’ve all been finding it hard. So a little treat to boost morale, I felt was a good idea. For the record I treated myself to 3 bottles of beer. I don’t drink a lot, but I do enjoy an occasional beer.

FGTeeV giant TeeV

Jack chose some add on pack for a game on his Xbox. Lily wanted an FGTeeV giant TeeV set. She has wanted it since Christmas, but it wasn’t on sale in the UK at the time. So she had been saving a voucher she got for Christmas, which she used for this. As this was more expensive than what Jack got. The delivery man came calling this morning, a lot sooner than I expected. It’s safe to say Lily was super excited.

She finally calmed down to take that photo, at first she was running around shouting “oh my god, oh my god”. It’s safe to say that Lily loves FGTeeV! Next of course came opening it. As is the fashion at the moment, you open the big box to find lots of little surprises inside each in their own package to open. Lily has had similar things for Ryan’s World (also on YouTube), my initial reaction was you get more for your money with this one. This costs £39.99 in Smyths at the moment.

A review

As you can see above, you get a big figure, a smaller figure, a small plushie that makes a noise and a keychain plushie. You also get a little squishy , a little flashlight and some stickers. You get the TV box to keep the toys in, with the added aspect of the enjoyment of opening each one. There are different ones to collect, with smaller and cheaper option to get more figures.

Lily was over the moon with it. Which is the important thing. She needed cheering up and it certainly worked. This was a nice and quick little blog post to write. It’s not the easiest time to be doing this, but for my own sanity I’m desperate to keep writing. Finding the time has been challenging, but I’m just about managing. Even if this was not how I’d planned things originally. It’s important for everyone to find things to keep you going in these difficult times. Stay safe everybody.

Dad Does Autism

Anyone else starting to crack up?

Anyone else starting to crack up?

So it’s basically been 2 weeks of everyone being at home, and not being able to go out. So the question I want to ask is, anyone else starting to crack up? Or is it just me? I’ve got a lot of things I can be getting on with to pass the time, but for the last couple of days I’ve struggled for motivation.

What really hit home yesterday, was I saw it in Lily for the first time. She didn’t want to go outside, she didn’t want to do much of anything. She just sort of moped about, looking fed up. I was in a funny moody, Natalie and the kids would tell you I was being annoying. Basically I was making silly noises, and doing stupid things. It’s something I do quite a lot, I get a sort if release from it. Yesterday was over the top and I got on everyone’s nerves.

In the end we went for a little drive around locally. I’m not sure where you stand with just having a bit of a drive. We didn’t get out anywhere, we just had a bit of a drive. Is that ok? I’m not really sure, but I needed to see some different scenery for my sanity. Everyone else felt the same, and I personally felt much better when we got back. I think everyone did. Jack has started to get more and more agitated, by not being able to follow his normal routines. He’s become very argumentative, but we are just about keeping a lid on it. I just wish I had some answers for him, the uncertainty is the worst part for everybody. For Jack it is even more of a problem.

So is anyone else starting to crack up? Or are you doing ok so far? If you are starting to feel it, what are you doing to try and cope with it? Any ideas are welcome, please leave a comment below.

Dad Does Autism

Delayed processing as part of autism

Delayed processing as part of autism


So we are into the second week of the kids being at home. Since my last post things haven’t been going quite so well. Jack has delayed processing, understanding delayed processing as part of autism, and how it effects Jack, was something that took us a long time to get our heads around.

To put it in broad terms, an autistic person may experience a delayed response to sensory stimuli. What this means using Jack as an example. When I ask Jack a question, there is usually no response. It’s as if he hasn’t heard the question. I normally ask again, as Jack usually has a TV or some music on. Just in case he didn’t hear. But it is highly likely he did hear the first time.

Echolalia and learned responses

He just needs a lot more time to process what has been said, than you would typically expect from a child. Jack can give immediate responses, but these are what are called learned responses. Which is where his echolalia comes in. Jack can learn a conversation, and repeat it the next time the same situation comes up. But this is like someone on auto pilot. You are not getting his true thoughts and feelings. We have had many “disagreements” with “professionals” who have worked with Jack regarding this.

Getting Jack to express those true thoughts and feelings, hasn’t been an easy process. We are getting there slowly, and Jack is much better for it. Learning ourselves when to use social stories and PECS took time. They are so important and have been vital to Jack’s progress, and his ability to communicate.

Visual Aids - a picture exchange communication system folder
One of Jack’s PECS folders

As a parent it’s not easy to always remember this. Sometimes you can forget that a simple question like, what do you want for dinner? Is not so simple for an autistic child. Jack has to be given options to choose from, otherwise you just get a blank look and maybe a “don’t know”. Start with options of food he knows, even showing him the options, and he can give you an answer fairly quickly. Even in a situation of high anxiety or meltdown, though it’s likely he will respond with nods of the head rather than words.

Delayed response to situations

This delayed processing as part of autism, also comes into play, with situations that happen. Which is why it comes as no surprise to me, that Jack was fine with the sudden change last week. But this week he is finding it very difficult. His anxiety has gone through the roof, and he’s become tense and argumentative. It’s like it has taken him a week to process what is happening, and everything that has changed.

We are now prepared for this, and a week isn’t actually a long time. In the past Jack has had spikes of behaviours that stemmed from an incident that has happened months before. Which left us and everyone else baffled, until we finally worked it out with Jack. Knowing about the delayed processing, and just how long the delay can be has certainly been a great help. Now when Jack is unhappy, we know to trace back for months to find the solution if necessary.

What’s happening now?

Jack finding things difficult this week, in one sense can be a good thing. It’s only taken a week for him to start to process what’s going on. So we can now work on bringing his anxiety down, and getting him in a happy place. 

The one issue with that of course is these are unprecedented times. We don’t have the answers to the questions he wants answering. When can he go back to school? I don’t know. Will respite be back soon? I have no idea. When can we go and see his grandparents and their dog Mack? I don’t have clue. Just like I have no answers for him when he asks about going bowling, or to the cinema.

He is getting frustrated that I don’t have any answers for him, and he’s becoming very argumentative at times. To be honest I’m getting frustrated myself, the last two days have been hard work. There’s no break from it either, no chance to recharge. The outlook isn’t looking good for that break coming any time soon either.

Jack was fairly calm and relaxed Tuesday evening, so hopefully that’s a good sign. When his anxiety has been down he’s been really good. He’s been playing with Lily more than usual, and spending more time out of his room than usual. I guess being at home all the time, staying in your room all day gets a bit dull. One positive of this coronavirus stuff, is we are doing activities together more than we would usually, which is nice. 

Free sensory guide

Lastly I would like to point you in the direction of autismspectrumteacher.com where you can currently get a free 12 page guide to “Meeting Sensory Needs” by clicking here.

It is aimed at teachers in the school environment, but having read it there is certainly value in it for parents as well. As we know only to well with Jack, and are beginning to learn with Lily. Meeting a child’s sensory needs is so important. Get that right, and everything else will start to fall into place.

There’s some great information and ideas in the guide, which is the first chapter of an upcoming book. Though it’s based in the classroom, you shouldn’t assume your child’s school is always aware and doing these things. So arm yourself with information to take to them, that’s what we have always done and will continue to do for Jack and Lily.