August 2020 - Dad Does Autism

Autism and Pokemon

August 30, 2020August 31, 2020Adam

Something that myself and Jack have wanted to do for a while, is a post about Pokemon. I’ve not been sure how to do it, but decided to look at the relationship between autism and Pokemon in general. And look specifically at Jacks complete Pokemon obsession. The cartoon itself and the games are obviously fun, I am just about young enough, to remember when the cartoon first came out in the UK.

I enjoyed it at the time, but soon grew out of it and didn’t collect the cards or anything like that. A fun fact that I only learned recently is, the creator of Pokemon Satoshi Tajiri is autistic. The idea for Pokemon came from his obsession as a child for collecting bugs, and playing video games.

Pokemon Go

The real game changer though, was when the Pokemon Go came out in 2016. It was a big craze when it came out, but has calmed down to the big Pokemon fans. The good thing about the game for an autistic person like Jack, is it encouraged getting out in the fresh air and exercise.

Getting Jack to go for a walk wasn’t easy, now he can’t get out the house fast enough, so he can catch Pokemon. Also there’s the social side to it, if you don’t know the game. There is a need to have in game “friends” to complete tasks and compete in raids. I joined a local group (I have my own game account) so I could do this with Jack. Then there’s the conversation topic, if anyone mentions Pokemon (or even if they don’t) Jack can talk all day about it.

I have to say I enjoy our walks “Pokemon hunting” as Jack calls it, we have spent many hours out there catching or battling Pokemon. It has been fun, but it is something Jack takes very seriously. Jack has trouble distinguishing what is real and what is fiction, and a game like Pokemon Go blurs the line even more. That is what I want to talk about next regarding autism and Pokemon.

Jack’s Pokemon obsession

Anyone who has ever met Jack, very quickly gets introduced to his “obsessions”. The 4 main ones are Pokemon, Minecraft, Secure Contain Protect and Lego. He will try and start a conversation about these things with anyone he meets. Which can be interesting when you’re stood in the queue at Tesco.

Currently he spends a lot of his time playing Pokemon Go, or various Pokemon games on his Nintendo Switch. He is determined to collect all of the possible Pokemon, and become the greatest Pokemon trainer who ever lived. It’s all good fun, but when people talk to him about it, they often don’t realise it’s not “just a game” to Jack. Saying that gets Jack very frustrated, to him his Pokemon are very real. Being able to tell the difference between reality and fiction. Is one of the big issues we face with Jack, and his ability to be independent at the moment.

Jack recently told he wants to travel the world to research all the Pokemon. A fun idea of course, but how to you make that a reality? I’m in a difficult place at the moment. Should I be trying to get him to see things from the “real world” perspective? Is that even possible for him? Should I just let him live in his fantasy world? Sometimes I wish I could live there. It’s so difficult to know what to do, as Jack also talks about wanting to get a job, have a girlfriend, get married and have a family. Some autistic people are able to function in the “norm”’of society, and some cant and need to be looked after their whole life. We still don’t know with Jack, it’s like he’s in a grey area in the middle at the moment.

Getting creative

Autism and pokemon is all about creativity, and it’s not just computer games and watching TV. Jack uses Pokemon to express his creative side as well. He is really excited to show you what he has been making, and we will start with his homemade Poke balls.

Jacks got some polystyrene balls, and decorated them using markers to looks like poke balls. The other thing he has been doing, is making his Pokemon book. Which is a a4 lined pad, which he is putting in Pokemon related stuff. Like drawing and colourings. It’s still very much a work in progress, and he is having fun doing it.

That’s all from this post on autism and Pokemon, the subject will undoubtedly pop up again at some point. As always, thank you for reading.

Dad Does Autism

Chocolate chip loaf cake

August 28, 2020August 28, 2020Adam

The latest recipe we tried from our top 20 easy bakes for kids, is the chocolate chip loaf cake. I personally love loaf cake, it’s my favourite kind of cake. Lemon drizzle is my favourite, but the kids wanted chocolate chip. The kids always win!

Ingredients & Method

250g butter
250g caster sugar
4 eggs
250g self raising flour, sifted
100g chocolate chips

Preheat the oven to 180 C / Gas 4. Lightly grease and flour a 900g (2 lb) loaf tin.
Beat the butter and sugar together in a bowl until light and fluffy. Add the eggs, one by one, mixing well after each addition. Mix in the sieved flour, then stir in the chocolate pieces/chips.
Pour into greased loaf tin and bake for 50 to 60 minutes, or until a knife inserted into the middle of the cake comes out clean.

Fun to make

Lily had a great time making this, as with all these recipes. The idea is that they are simple enough for Jack and Lily to make, with minimal involvement from me. I helped with weighing the ingredients, breaking the eggs (as Lily gets very anxious about getting shell in the mixture), and putting in and out of the oven.

Like I said, Lily really enjoyed making the chocolate chip loaf cake. It’s a pretty big mixture so takes a bit of work to mix, but Lily had some music on to keep her motivated.

Lily sieved some icing sugar on the top of the cake to finish it off. It turned out pretty well, all of the chocolate chips seem to have sunk to the bottom half of the cake, but I like the texture of the cake. And in my humble opinion it tasted awesome.

This was number 9 of our top 20 list, we are getting through them slowly. We all hope you enjoy these posts, and they inspire you to get baking. As always, thank you for reading.

Dad Does Autism

Things not to say to a parent of an autistic child

August 22, 2020August 25, 2020Adam

This post idea came from twitter, and some of the great people I’m following on there. Things not to say to a parent of an autistic child. Some of the ridiculous and often downright offensive things, that we as parents of autistic children have said to us. Amaze me at times. Usually its by people who aren’t meaning to be nasty and offensive. There are those horrible people out there, but I’m not wasting my time trying to preach to them.

What I want to do is tell you all, things not to say to a parent of an autistic child. Specifically some of the more common things people say, and probably don’t realise just how offensive they are being. I’m quite a relaxed guy, and don’t personally get too upset by these things, but some people do, which is why I want to do this post.

Things not to say

Let’s start with the simplest and probably most common one. Sorry. When a parent tells you their child is autistic, for Christ sake don’t let the first word you reply be, sorry. I’m not sorry, they’re probably not sorry, and no one has died. Don’t be sorry. Depending on the parent, you could be met by a sarcastic or angry response. You’d be getting the sarcasm from me!

What like Rain man? If you don’t know Rain Man, it’s an 80’s movie about a someone kidnapping their autistic brother, to try and force him to give up his share of their inheritance. My main issue with it is, I’ve never watched the film so I have no idea if Jack or Lily are anything like Rain Man. I’ve heard plenty about it though, with some blaming it for the creation of lots of the negative stereotypes surrounding autism. Some also say it made autism visible, which was a good thing. I should probably watch it and make up my own mind at some point.

My personal favourite, Does that mean they are really good at maths? Something I got asked a lot when Jack was younger, the look of disappointment when I told people Jack doesn’t understand maths at all was quite amusing. Lily does like Maths, and finds it easier to understand than other school work. She’s not quite at genius level, not yet anyway. And let’s not forget, they don’t look autistic. Autism doesn’t come with “a look”, so I’m not quite sure what that is even supposed to mean. Or what this autism look that some people expect even looks like.

Just like any other child

I know it can feel a bit awkward knowing what to say, and unless you have been around autism you are unlikely to know a great deal about it. And what you do know are likely to be unhelpful stereotypes. So my advice for if the situation arises when someone tells you, there child is autistic. Treat the conversation like they are just another child, which of course they are. Then see where the parent takes the conversation.

I’ve shared 3 things not say to the parent of an autistic child, but I’ve been fairly lucky with my experiences. I’m sure there are lot more, and probably worse things that have been said. So to all the parents out there, if you have any other examples you would like to share. Leave a comment on here or on the social media’s, and I will add them into the post. As always, thank you for reading and your continued support!

Suggestions from readers

How do you cure them?
Did they have their vaccines?
Does that mean he’s a mong? (Christ, I’d be getting arrested, if someone said that to me.)
Is he going to be like Forrest Gump?
Will they grow out of it?

Dad Does Autism

Feeling stressed and overwhelmed

August 18, 2020August 18, 2020Adam

I’m sure I’m not the only one feeling stressed and overwhelmed at the moment. I think all 4 of us in this house are, and I’m sure a lot of people are. Especially parents, and even more so parents of children with special needs. I said in my last post I was planning to take time out for the next couple of weeks, to spend plenty of time with the kids. Truth be told, it’s as much for my own benefit, as I was just feeling so overwhelmed with everything.

I think Lily is finding things most difficult in our house at the moment. She’s been off from school for so long now, it’s proving more and more difficult to keep her entertained. With no holiday, and no real days out, she’s become bored. She is also being very vocal about not wanting to go back to school, which is no surprise. I firmly believe she needs a SEN school, and we are going to have a battle on our hands to get her a place.

This time at home has really highlighted Lily’s autism, and where it has a negative affect. She’s been really confused by what’s going on, her anxiety levels have been more visible than ever before. She is having numerous meltdowns everyday, though I think we’ve often overlooked her meltdowns in the past. As they are not as violent, or dangerous as Jack. But a meltdown is a meltdown, and will be just as distressful for Lily.

What is sleep?

One major issue is getting Lily to sleep at night, which of course has a knock on affect on mine and Natalie’s sleep. If we can get her to sleep before 2am at the moment, it’s a miracle. She already takes medication to help her sleep, so it might be a case of the dose needing increasing. Which is what happened with Jack as he got bigger. The chance of getting an appointment with the paediatrician right now? Not bloody likely.

I’m sure this is factoring into me feeling stressed and overwhelmed, but this is the life of the “autism parent”. Thankfully, apart from being argumentative and the odd meltdown. Jack has been pretty easy to deal with, as he’s been busy building stuff on minecraft.

Me time

Since lockdown started, way back when. I’ve basically no quality “me time” at all. Sure, I’ve grabbed a few minutes peace here and there, but those hours in the day when the kids are at school. Where you can just get stuff done, I’m sorely missing. I feel like I’m constantly trying to juggle doing 2 or 3 things at a time. As much as I’ll miss the kids being around, when they go back to school. I’ll be grateful not to have them under my feet all day long hah!

I had a lot of plans for house, garden and garage this year, and although some bits are getting done. It’s so difficult with 2 kids who need your constant attention. One major job I have managed to do, with the help of my parents. Is take out the bushes in our back garden, which was something we’ve been looking at for a couple of years. We get birds nesting in them, which is why we’ve kept them so long. But they grow like crazy, and every single one of them comes with massive thorns. Which I kept getting stuck in various body parts, never mind the kids.

So we decided to take them out, and put new stuff in, whilst also incorporating a fairy garden for Lily. Which should be fun. Here’s before and after photos to show you the difference, the garden feels like it’s twice the size it used to be. The bare patch in the middle had already been cut down, and was the highest part, before I thought about taking a photo. I’m still getting used to thinking about photo opportunities for the blog.

The blog

As I said, feeling stressed and overwhelmed has left me not feeling motivated to write what I would call “proper” blog posts the last few weeks. Coming on and having a bit of a rant like this, is pretty easy. Writing properly about a certain subject, takes time and a bit space to think. Which I’ve just not been getting. I have started one, I just need to finish it. Anyway, I have kept up with my daily pinning to Pinterest, so despite the lack of new posts. August is well on the way to being my best month for views, which is definitely helping keep the morale up!

This has gone on long enough, as always I appreciate everyone for taking the time to read, and I hope you’re all having a lovely summer.

Dad Does Autism

Simple homemade cookies

August 13, 2020August 13, 2020Adam

It’s time to try another of the recipes from our, top 20 easy bakes for kids post. If you haven’t already seen that post, click the link to see all 20. Simple homemade cookies are what we have in store for you today, and who doesn’t love homemade cookies?

This was another one where I sat back and Lily did most is the work by herself, perhaps because it’s been a while since we last did some baking. She was very enthusiastic about making these. Weirdly this was the most difficult one so far, to find a simple recipe for. It seems like everyone to make their cookies extra fancy, personally I just want a good old fashioned chocolate chip cookie.

Ingredients

112g butter
55g caster sugar
1 large egg
112g plain flour
100g chocolate chips

Method

Preheated the oven to 180°C (gas mark 4). Line two baking trays with baking parchment.
Cream together the butter and the sugar until its light and fluffy. Add the egg and continue to beat.

Sieve the flour and mix in with the butter and sugar.

Once you have your cookie dough, divide to make the number of cookies you want. It depends on the size of cookie your after. We got 10 medium sized cookies out of it. Place onto baking tray and press the mixture down slightly.

Bake them for 8-12 minutes. When they are cooked leave them for 15 minutes on the tray then transfer to a cooling rack.

Simple homemade cookies

And there you have the finished article! Lily piled in some extra chocolate chips, so these are a bit extra chocolatey. I think I left them in the oven a little too long, I’m a bad judge on when cookies are ready. A couple of them were a little burnt, some still had that chewy texture you want. They all tasted nice which is the main thing!

They must have been good enough, as they didn’t last long. I’m hoping we will do another couple of the recipes from our top 20 bakes post, that we haven’t done yet. In the next week or so. As always, thank you for reading.

Dad Does Autism

Summer holidays

August 6, 2020August 6, 2020Adam

Originally I had the idea to write about the transition to the summer holidays from school, which is something Jack finds difficult. It’s perhaps unfair to say we dread the them coming round, but the first week or two are always very challenging. But it’s been a weird year, and although Jack did go back to school for a bit. It doesn’t feel like normal, and Jack has mostly spent his time on his Xbox. So I’ll leave that on the back burner, until next year.

His routine has been all over the place for months, so I don’t think the boy knows what’s going on anymore. He broke his TV in a meltdown a few weeks back, so he has his Xbox in the living room at the moment. Which he is loving, far too much for my liking. It’s keeping him happy, and entertained at least.

Spending time with the kids

I’m looking at slowing the blogging down for this month, and as much time doing stuff with the kids as I can. Obviously we will no doubt share some of the things we do on here, whenever we we do anything now they both ask if it’s going on the website. Which is nice, I’m happy that they are proud to show of the things the do.

We cancelled our holiday to Devon this year, and booked for 2 weeks next year instead. Which is something I’m really looking forward too. It does mean I have to keep the kids entertained without a holiday, and some of the things we’d like to do not open, or we are unsure about doing.

We got a small inflatable pool for the garden, which Lily loves splashing around in. With the heatwave that’s forecast I might be getting in it myself soon hah. We are going to try and have as much fun as possible, during this unusual summer.

Looking towards school

Thinking ahead, does anyone have any idea what’s happening with school? Jack will go back in September, but it all seems a bit unclear with Lily. To be honest from September, Lily and school is probably going to be a “hot topic”. The EHCP school promised to apply for this year isn’t materialising, leading to a greater feeling of we need to go about it ourselves. And start looking into “special schools” for Lily. I guess we will see what happens in September.

I hope you are all enjoying your summer holidays, whatever you are getting up to. As always, thank you for reading.

Dad Does Autism

What is Autism?

August 3, 2020August 3, 2020Adam

I have decided to do a series of, What is…posts, looking at the different medical diagnosis’s we have in our family. And there’s a few! What is autism? Is the obvious place to start. I’ve touched on the subject, and talked about what is and isn’t in various posts, but this will the first post looking directly at what autism is. I’m will then be following up with, What is Chromosome Micro Deletion? What is Fibromyalgia? Then possibly some others like Anxiety Disorder, ADHD, Sensory Processing Disorder, Pathological Demand Avoidance, Social Anxiety, PTSD, Depression….like I said, I’m not short of subject matter.

I’m far an “expert” on all these things, they are things I’ve lived through myself or watched those around me live through them. Part of my way of coping, especially with the conditions those around my that I love have to live with is. Researching as much as I can, to help them as best as I can. Now I want to share what I’ve learnt with as many people as I can. That after all, is the whole point of this blog.

Outside perception

Everyone seems to have heard of autism these days, but how many people actually know what autism is? When I see various people talking about what autism is, whether that’s directly to me, or seeing posts online. I have to be honest, it makes me wince. More often than not, they are completely wrong. There is a lot more awareness that autism is a thing, but the awareness of what autism actually is. And what it means to be autistic, still leaves a lot to be desired.

Of course the vary nature of the condition probably doesn’t help, it’s a vast spectrum. Every autistic person is different, and some have other things like learning difficulties, anxiety disorders etc.., and some don’t. If you don’t know anyone who is autistic, how much are you likely to know? When Jack got his diagnosis, I knew nothing. I vaguely could remember hearing about it, somewhere in my life, that was it.

So what is autism?

The National Autistic Society says,

“Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.”

Is that what you all had in your mind, when you started reading this? If you thought something please leave a comment saying what. I’d like to hear what people thought and why.

I’d also like to add what the NHS has on their website about, which makes a very important point.

Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.

It’s something you’re born with or first appears when you’re very young.

If you’re autistic, you’re autistic your whole life.

Autism is not a medical condition with treatments or a “cure”. But some people need support to help them with certain things

Other than the “it appear when very young” bit, you are born autistic. That’s a very important thing for people to remember. Sadly, people get drawn into looking for “cures” or blaming it on vaccines. I have two autistic children, I have completely accepted who they are. The difficulties they face, but also embraced what they are good at.

Acceptance

Acceptance is the latest buzzword, that is replacing awareness. Most people are aware of autism now, what needs to be worked on. Is people accepting what it is, and what it means. I hope this explained that well enough for people to understand. It can be a difficult thing to grasp when you around it all the time, so asking people from the outside to fully grasp it. I think is asking a lot, but if we can get people to at least know the basic facts. Then we will have made progress. As always, thank you for reading, and your continued support.

Dad Does Autism