autism acceptance Archives - Dad Does Autism

10 things my autistic children have taught me

May 5, 2021May 5, 2021Adam

It was nearly 12 years ago that Jack was diagnosed with autism, then nearly a decade later Lily got her diagnosis. I wanted to do a post looking at 10 things my autistic children have taught me over the years. Unlike Natalie who had been around disability all of her life, I had been sheltered from that life. It was a whole new world I was stepping into. A world that was a lot worse than I could ever have imagined, but is full of some truly strong and wonderful people. So here is my list of 10 things that my autistic children have taught me.

1. Patience

I am naturally a patient person, but since the children were diagnosed my patience has been tested more than ever before. Whether that was dealing with professionals and schools, or the children themselves. Patience is key to bringing up autistic children. Nothing ever happens quickly, but stay patient and you can win the fights against the system. And your children can learn the things you are trying to teach them, it just might not be the way you planned in the first place.

2. To Fight

When you have children going through the SEN process, you have to learn to fight. There is no alternative if you want the best for them. Sitting in meetings with a group of professionals, telling them what support our child needs. And refusing to backdown would terrify a 20 year old Adam. It still scares me today, but I’ve learnt that I have to stand up and fight.

3. Self Care

For those who are familiar with this blog, you probably know that my struggle with depression is a big factor in my life. You can see my post on Managing Depression for more about that. Jack and Lily brought a real focus to me realising, I can’t help them if I don’t help myself first.

4. To Have Confidence

Confidence has always been my nemesis. The things we’ve gone through as a family, and come out the other side has given me confidence in myself. I’ve always wanted to be a writer. The kids enthusiasm and participation in this blog, is what made me start in the first place. Then when I was struggling and took a break, it was then again that got me going again. Now I’m also fulfilling my dream of string for an NFL website called Franchise Tagged. Click the link if you fancy reading my latest article.

5. Unconditional Love

Unconditional love for your children should be a normal thing. When you have child who loses complete control during a meltdown, and can be violent. It can be testing, but learn about the person they are. You realise that is not them, it is just a part of the struggle that have to live with. Then the unconditional love stays strong.

6. Positivity

For someone who struggles with depression and confidence, being positive has often been an alien concept to me. I made a decision early on that I wanted to keep a positive outlook, when it came to Jack and Lily. Weighing myself down with the negatives wasn’t going to help me, and it certainly wasn’t going to help the children. I’d like to think for the most part I’ve succeeded with that. Obviously, there have been difficult times that have got me down. We all have them.

7. To Be Aware of Your Surroundings

Before children some people would say I floated around in my own little world, blissfully unaware of what was going on around me. Some would say I still do, but that is only partially true. Jack’s hypersensitivity to sound led to Natalie and I always being alert. When we were out with Jack we’d continually scan the surrounding area for things that could make loud noises. Babies, young children, motorbikes, workmen etc. Sitting down at a restaurant means observing the surrounding area and tables, before choosing where to sit. Being aware of flickering lights in a shop, and strong smells we also have to be aware of. It’s become second nature to us both, we now do it automatically even when we are on our own.

8. Accomplishments can be tiny but mean the world

When you have children you have big dreams for them, you want them to achieve great things and make you proud. This doesn’t have to change because your child has a disability. A well-known autism advised parents to grieve for the child they have lost, an idea I despise. You simply have to reset your expectations accordingly. Jack and Lily already both have the ability to maybe do something great in specific areas. But up to now the simplest of things have made me the most proud as a Father. Jack saying his first word (which was Adam!!) at nearly 5 years old, when we’d been told he’d never speak. Lily trying a burger at 8 years old. For a child that wouldn’t have anything touching on a plate, and only ate beige food. I can’t even describe how huge that was. That’s just one simple example each, but these things that most take for granted, are huge achievements for children like Jack and Lily.

9. Silence Speaks Volumes, Words Can be Misleading

Although Jack has learned to speak, his understanding level doesn’t match up with his vocabulary level. He is also unable to verbally express his emotions. We are finding Lily has some of the same issues. So for us to understand them we have to look past the spoken words, and see and hear what is not being said. The actions and behaviours tell you more, and then you can use things like PECS and vision boards to find the real answers.

10. Not to Judge People

It’s very easy to judge, I’ve certainly been guilty of it many times in my life. When you have disabled children suddenly you find yourself being the one who is judged. It really does give you a wake up call, and teaches to look deeper into people. And what their circumstances might be, rather than making i stand judgements.

So there’s 10 things my autistic children taught me. I hope they’ve taught you a few things too. As always, thanks for reading.

Dad Does Autism

Easter Holidays 2021

April 20, 2021April 20, 2021Adam

The school holidays are always an interesting time, for families with autistic children. The Easter Holidays 2021 were no different for us. Jack particularly struggles with the school holidays. Like many autistic children, the sudden change of routine throws him out. He does enjoy time at home, especially spending all day in his bedroom. Watching TV and playing in his computer, he did become a teenager after all.

The lack of a rigid routine takes its toll and by the time we come to the end of the holiday. Jack can’t wait to get back to school. We do try to get routines in for the holidays, but it’s just not the same as when he’s at school.

It’s the complete opposite for Lily, who never wants the holidays to end. I’ve talked a lot about Lily’s problems at school, and there will be a lot more to come. There were tears Monday morning, but he first 2 days of school seem to have gone okay.

How we are doing as parents

As far as myself at Natalie go, we are getting on with things the best we can. The passing of Natalies mum at the end of March, has obviously hit her hard. The kids being off school 2 weeks, from the day after the funeral wasn’t ideal. It’s been nice to have a bit of quiet time over the last couple of days.

I was recently asked to join the team of writers for an American Football website. It has always been a dream of mine to combine my love of writing, and my love of sport. I’m absolutely delighted to get this opportunity, and excited for where it might lead. If your interested in American Football, or might just like to take a look. Or just show me some support, you can see the first article I wrote by clicking the following link. https://franchisetagged.com/the-case-for-best-player-available-early-in-the-draft/

That’s it for my little Easter Holidays 2021 update. I hope you all had a lovely Easter, if you celebrate. As always, thanks for reading.

Dad Does Autism

Autism Awareness Week

April 3, 2021April 3, 2021Adam

I put up my first post in a long time earlier in the week, and it was a complete coincidence that it happened during Autism Awareness Week. To be honest, it’s never been something I’ve been bothered about. Which is why I was blissfully unaware of the coincidence.

The cliche of autism being 365 days a year, not just one week is absolutely true. So is the argument that just about everyone is now somewhat aware of autism. So that should not be the aim anymore, the aim should be to encourage autism acceptance. The other problem I have with this week, is that it brings all the things I don’t like in the autism community to the forefront. Especially on social media.

A friendly reminder

Unfortunately just like every other part of society, there is a lot of nastiness about in the autism social media community. Personally I stay well out of it. I have enough to do, and enough problems without getting embroiled in that. What I would like to say though, as a friendly reminder during autism awareness week. Is that we are all trying to do our best. For ourselves, for our children and family, or in our workplaces. Whatever it is the vast majority just want autistic people to be accepted, and able to live the best life they can.

The best way to make that happen is by supporting each other, not by shooting each other down. Which is something I see far too often. There are a lot of great supportive people out there, I just wish there was more of it, and less of the ugly stuff. Yeah

That’s all I’ve got to say today. We would like to wish you all a Happy Easter, and don’t eat too much chocolate! As always, thank you for reading.

Dad Does Autism

The good and bad things going on at school

October 6, 2020October 6, 2020Adam

I’ve not been putting much on here for the last month or so, and I will talk about why at a later date. Today though I wanted to share with you the good and bad things going on at school. Jack and Lily both went back to school happy enough, but now as we start to settle into the routine of being back at school. The little cracks start to appear.

To be honest, on the whole Jack is doing really well at school. He’s doing some really good work, he’s maturing as a person, and he’s becoming more involved around the school as a whole. Whereas previously he’d mostly stay in his class room, even at dinner time. He still eats his dinner in his class room, where he usually has a friend stay with him. He took his and his classmates plates back to the dinner hall, when they had finished last week. These are the tiny things that in normal circumstances, wouldn’t mean much. But us, and families like us, are massive.

Confusing Jack

There has been one thing that has annoyed me a bit though. One of Jack’s obsessions at the moment is something from Minecraft called SCP’s. It is videos made using minecraft, and the scp’s are mostly monsters. Jack wants to research about the SCP’s during his time on the computer at school. Some of the images he finds have scared the other children, so he was rightly told he couldn’t look for them.

What school did was create a list of safe SCP’s he was allowed to research. Jack was happy with this compromise, and was sticking too it. He then went on the computer and found the website blocked, when he searched for the SCP on his safe list. The school have blocked the website as it’s unsuitable. I have no problem with that, but I do have a problem with how they’ve gone about it.

They should have blocked it from the start, and they definitely shouldn’t have come up with this safe list. To then go and block it. It left Jack very confused, and unsurprisingly caused the first major meltdown he’s had in months. Long term it will be for the best, but it’s caused him to become unsettled, when he was doing really well. Which is disappointing. Hopefully it’s just a small blip, and things continue to go well.

Bigger problems at Lily’s school

On the surface Lily’s return to school is going really well. She says she doesn’t want to go every morning, but her friend comes and walks to school with her. And she goes happily enough, and comes out of school at the end of every day smiling. But a closer look reveals all is not as rosey as school would like everyone to believe.

We err promised when Lily started at the school last September, that we would work towards a Education, Health and Care Plan (EHCP) for Lily. Obviously Covid happened and we didn’t get far with that, in the last school year. We had a multi agency “child in need” meeting, through a zoom call. These have been in place for a few years now for Jack, but now include Lily as well.

The question was posed to Lily’s headteacher, what is happening about an EHCP for Lily? He said they would be working towards applying for one later in the year . Which we were happy enough with. Then then next day we get and email from the SENCO from Lily’s school, which basically said they have no intention of applying for the EHCP. Instead they want to apply for non legally binding support, where they will get funding, but it has to be re applied for every year. There’s no legal requirement that the funds even have to be spent on Lily. But most importantly, when it’s time for thinking about secondary school for Lily, we will have nothing in place for her to have extra support. The school are simply taking the easy option for them, but it the right option for Lily.

Apply ourselves

We will be going down what will be a very lengthy process of applying for the EHCP ourselves. Already we have had some great advice and support from Social Media and the local community. We would like to thank everyone for that. I am going to use this platform to share the experiences we go through with this. The number of people we have already met who have been through this, or are in a similar position just locally has staggered me. Not to mention the people all across the country, we’ve heard from on social media.

So if we can share this journey and help the people who go through this after us, in any way at all then that would be great. So this has been the good and bad things going on at school. People often say it must be difficult being a “special needs parent”, and I always say that it is. But it’s hardly ever because of the children. 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

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

Finding good support providers for autistic children

July 31, 2020July 31, 2020Adam

Something I’ve come to learn is, finding good support providers for autistic children. Is a bit like looking for the golden egg/fleece, or Poseidon’s Trident. Or whatever other mythical object you might want to find. We have been fairly lucky that Jack goes to a really good place for overnight respite, every other week. Finding a good service provider for weekly daytime respite, has proven a lot more difficult. We have gone through a few in our time, for a variety of different reasons.

The first provider we had ceased to exist due to lack of funding, so we moved to another one. Not long after the same thing happened again. The next one we had for a couple of years before cancelling only recently. They were okay, with 2 workers taking Jack out for 3 hours a week, which he really enjoyed. The trouble was, the turnover in staff was ridiculously high, which caused problems. As Jack would get upset when people would leave.

The staff also weren’t given any real training, and far too many times we were let down by people not turning up. Or cancelling at the last minute, which caused major problems. Telling an autistic child that their plan for the day has been changed at the last second, or 30 minutes after he was supposed to have gone out, which happened a few times. With no real explanation as to why to give him, is a recipe for disaster.

Searching for a new provider

With this in mind we have been searching for a new provider, for a while nothing was coming up. Then we were recommended a place, that sounded so perfect for Jack. A provider that could give Jack the 2 to 1 support he needs. They have their own centre, where Jack can go and do all sorts of activities. He can also mix with other autistic kids of his own age if he wants to, and he really wants to. He finds new people difficult and it will take time. They can also take him out into the community, and the big one is the service continues into adulthood. This is unheard of, I’ve never certainly never heard anything like this before. So we desperate to try and get Jack on their books.

We had the issue over needing funding increased to allow Jack to have 6 hours a week, to make it worthwhile. We got the funding in place, for him to go over the summer holidays. He went for the first time this Thursday.

Jack’s first visit

Jack is always anxious about going to a new place, even somewhere he is looking forward to going to. So we put all the ground work in, to make him as comfortable as possible. The people who were going to be looking after him, came to meet him. They showed him photos of where he would be going, and talked to him about what he likes, and what he wanted to do.

On the day, Jack’s support workers came to pick him up, and he was so excited he shot straight out of the door. I had to call him back, as he forgot his bag. It was a good sign that he was so happy to be going! He was really happy when he came home, and even brought home some homemade pizza for us to eat. And he had all our favourite toppings, Pepperoni for Mum and Lily, and vegetation for me. Which shows he was putting thought into what we liked as he did them, which is nice.

He talked all about what he had been doing, and how he met lots of new people. He said he can’t wait to go back next week, and even asked why he can’t go everyday. In the evening we did have a meltdown, which would have come from all the sensory input, throughout the day. He was fine again afterwards, it’s just one of those things. Jack will always have meltdowns. Hopefully when he fully settles into the routine of going there, he will be able to stay calmer.

Overall though, finding good support providers for autistic children, is no easy task. We are really pleased with the one we have found, especially as it’s not something that will suddenly stop when he turns 18. Which is what happens with his current overnight respite. We are a few years away from that yet, but it soon comes round.

If you want any advice about service providers, please feel free to ask. As always, thank you for reading.

Dad Does Autism

Lily’s homemade cards

July 22, 2020July 22, 2020Adam

Today I just want to share something with you that Lily did as a surprise for me. She made me a card. Lily loves making homemade cards, and there doesn’t need to be an occasion. She will just make one for people, she does it all the time for us at home. Her friends at school and other family members. She just loves being creative, and sharing it with people.

Regular readers will know that Lily loves to get creative with arts and crafts. You will also know that I like to bang on about it continuously, like any proud father should. As a young autistic girl, she is finding so much of life really difficult at the moment. When she sits down with some paper, card or whatever else, and is just allowed to be creative. It is such a beautiful thing to see, and makes me so happy.

Lily’s card

So there’s Lily’s card, and I can’t even express how much that I love it. A little picture of Lily she printed out, on top of a ladder made out of ice lolly sticks and matchsticks. I love how she found a photo of her reaching up, and it’s then positioned towards a moon. Then in the speech bubble it says, “love you to the moon and back”. It is just so cute, and it melts my heart. Then you have Lily’s creativity coming out with the night sky. So many colours going on, and then some stars stuck on. I think it’s incredible, but I’m obviously biased, so what do you think?

Homemade cards are always great for birthday’s Christmas, and whatever else you celebrate. But you are probably expecting a card of some sort already. To get one for no particular reason, other than the person giving it to you wanted to make something for you. Is really cool, and something I’d recommended doing, either yourself or something to get your kids to do.

If you’d like to see some more of Lily’s creations, click here to go to Lily’s Art Gallery. Her little gallery is slowly growing, and there’s quite a few cool things in there now. As always thank you to reading.

Dad Does Autism

Autism and coping with special occasions

July 14, 2020July 14, 2020Adam

We had a busy weekend, the birthdays come thick and fast this time of year in our family. So I thought this was a good time to talk about autism and coping with special occasions. I’ll talk about the weekend we’ve had, and then talk about strategies at the end. They are very much the double edged sword in our house. Both Jack and Lily enjoy celebrating birthdays, Christmas etc.. but the change in routine, the excitement, family gatherings can often become too much for both of them.

But, they both expectations of what happens on birthdays and Christmas, so when we tried to not to as much to help with their sensory input and routine. That upset them. So it’s a very fine line we tread, between keeping them happy and celebrating special occasions, but not over stimulating them.

This weekend

This weekend was a busy one, there was a barbecue at my brothers house. For my brother and dads birthday’s, with a few family members there. Jack was happy as he had 2 dogs to play with, and Lily had her cousin to play with. It probably helped that due to what’s happening in the world right now, there was only a small number there. But Jack coped really well, his anxiety which would normally be through the roof, was manageable.

The dogs certainly helped, especially as they chased each other and were continuously play fighting, which Jack found hilarious. He was chatty, fairly calm and even watched us playing cricket. He didn’t want to play, but would happily fetch the ball. So he sort of was.

As for Lily, she loves playing with her cousin and she spent the entire time by his side. Playing football, cricket, with the dogs and generally getting up to mischief. Which was lovely to see. He is a couple of years younger than Lily, which puts them at a very similar level developmentally.

Lily is both girly and tomboyish, she’s happy playing either the typically boy or girl games. She seems to get on better with boys than girls though, as most of the close friends she has created have been boys. At school and even at nursery before that.

Mum’s Birthday

Saturday was nice, and then it rolled into Sunday which was Mum’s birthday. When it comes to autism and coping with special occasions, 2 days in a row is a very big ask. We also had the issue of the birthday routine. When it’s one of our birthdays, we always go out for a meal. Eating out isn’t always easy with Jack, as he finds overwhelming, the sensory input and his anxiety can trigger meltdowns.

We have learned ways of trying to manage it for him, and last year he was coping really well and really enjoying going out for meals. Of course this year we haven’t been anywhere, and it’s certainly a worry that we might be back to square one. When we eventually do go out for a meal again.

Mum’s birthday was more of a struggle

After Saturday, and Jack had stayed at his overnight respite on Friday, Jack was pretty tired on Sunday. Just like the rest of us, tiredness makes Jack less tolerant. We had prepared him, and Lily that we would t be going out, and that we would order in pizza instead. Which they both seemed happy with. We also planned to go for a walk around, a local nature reserve.

We were later than planned going to the nature reserve. Natalie has fibromyalgia, and Saturday has also taken its toll on her. She needed time to rest and for medication to work before we could go. With all of this by the time we got there, Jack was very anxious and on edge. The nature reserve has several ponds, the first one where the car park is tends to be very busy. Especially on a Sunday.

Once you get past that it thins out and you don’t see too many people. Jack was very argumentative as we walked around the first pond, a sure sign he’s struggling with his anxiety. Once we got past that bit, he calmed down other than getting annoyed with flies.

The fairy garden

Lily was really excited to see the reserves fairy garden. Which is a “designated area”, that’s been turned into a fairy garden, where you can add your own creations to it. It’s pretty cool, and not something you’d expect to see in a place like this. It’s not an official thing, just something someone started around a tree.

I know there have been some issues with vandals in the past, but it’s always been in good shape when we’ve been there. It also means it looks different every time we go. Which is pretty amazing. Now as well as adding something to this garden, we have plans to make our own at home. Which Lily is very excited about.

It turns out the nature reserve is bigger than I realised, despite having been there a number of times. As we found some different paths and several ponds I’d never seen before, where it was even quieter. This was great for Jack, who was much happier. We did end up getting a bit lost, and Jack found the way back for us. Using the map on the PokemonGo app, to find the way back to the pokestop at the car park. Something Jack was extremely proud of!

Pizza to finish the day

We finished the day off by visiting Natalie’s parents, and ordering some pizza in. After a busy weekend, the kids were ready to scoff down some pizza. All 3 of Natalie, Jack and Lily find it difficult to go to Natalie’s parents house. Natalie’s sister who had severe disabilities passed away last year. She lived at home with 24 hour care from carers, meaning the house was always busy (often chaotic) and noisy. Jack never liked going because of those reasons, and often wouldn’t go for visits and stay at home with me.

Now it is a big house that feels empty, and Jack finds that just as difficult. Just as we all do, the quietness serves as a constant reminder of a loved one who is no longer there. His gran also had an accident, knocking a cupboard with her wheelchair, which saw a teapot fall and hit her on her shoulder. Jack was very quiet during the visit, and at times argumentative. When we got home and Jack went to bed, he burst into tears.

This was actually a great thing. You may have heard the MYTH, that autistic people don’t feel empathy or love. The truth is of course they do, but like Jack they can find showing different emotions difficult. Or they show in a different way than what is considered “normal”. Jack letting his emotions out like that is a positive thing.

The strategies for autism and coping with special occasions

When it comes to autism and coping with special occasions, you have to think ahead. You have to strategies, you have to plan everything out and you have to try and establish routines. All of our birthdays in the house follow the same routine, depending on whether it’s a school day or not. Breakfast, presents (or school), chill out time, meal at a family place. Birthdays are not the time to try somewhere new. There is already enough going on in the autistic child’s mind, that it would likely be a recipe for disaster.

Start reminding the child weeks in advance that the occasion is coming up, if it’s someone else’s birthday. Make sure they see all the presents they will be giving before hand. Plan early and tell them what you will be doing on the day. The more prepared they are the better. Now every autistic person is different, some may be able to tolerate any change, some might not be able to cope with any at all. You are best placed to judge that.

We have had lots of very eventful and stressful birthdays with Jack. It would have been easier to just do very little for birthdays, but Jack wanted to celebrate them, he wants to go out and do things. So we put in the hard work to figure out how to make it work, and it was doing. Like i said before though, I just hope the current pandemic doesn’t put us back to square one.

The last and most important point I’d like to make is, don’t put pressure on them, and yourself to make everything “perfect”. It probably isn’t going to be. There will likely be anxiety spikes or meltdowns. You might have to walkaway from something that was planned, because they just can’t cope with it. That is okay, make adjustments and just find a way for everyone to enjoy themselves and be happy. At the end of the day that’s what is important. So, that’s my post about autism and coping with special occasions, I hope there’s some useful bits in there for people. Also that it gives a little insight into what birthdays are like for families like ours. This was a good weekend and Jack and Lily cooed really well on the whole.

Then of course there’s Christmas, but that needs a post all of its own, as that can be really….interesting. As always thank you for reading.

Dad Does Autism

Interview with an Autistic Child

July 8, 2020July 8, 2020Adam

One of the things I find most difficult to try and explain to people, is what it is like trying to hold a conversation with my son Jack. That’s where the inspiration for, interview with an autistic child came from. Nothing I could ever write, could capture Jack’s personality and his “autism” as this has. Me talking will be in bold, and inside Jack’s answers there will be comments from me, these will appear in brackets and italic, to be easily distinguished. I apologise if it gets a bit confusing, but that is kind of the point of this hah.

I explained to Jack what we were doing, and what it was for before we stared. He was very happy to do it, indicated by the huge grin on his face. Jack loves showing off, and as with most kids these days it seems. He wants to be famous online, YouTube, TikTok etc. So jumps at any chance to be part of this blog. So let’s get on with the interview.

What is your name?

You know.

Yeah, but what is it?

Jack. That’s a dumb question you know.

How old are you?

You know.

I know, but the people reading don’t. So you need to tell them (-pause-)how old are you?

I told you, you dummy.

No you didn’t.

What? You know, come on.

Yes, but you need to answer the question for the readers.

(At this point Jack is giving me a funny look, so I whisper to him 12 and he nods his head and we move on.)

Who do you live with?

You know, dumbass. (You might have noticed there’s a trend to Jacks answers.)

I know. But you need to answer for the people reading, remember? Because they don’t know.

Guess who’s over you’re head?

(At this point Jack has put one of his favourite teddy’s on my head, and wants me to guess which one it is. If you aren’t aware of the snuggly’s you can read about them by clicking here. A little panda has been added to the gang, so we went through this 4 times before I repeated the question.)

You know dummy. You say them I will nod.

Mummy (Jack nods), Daddy (Jack nods), Lily (Jack nods), anyone else? Biscuit. (Result! An independent answer!! Biscuit is our pet guinea pig.) And you know who else? Who? The Snuggly’s (You can never forget the Snuggly’s.)

Do you like going to school?

Yes. (That’s all Jack had to say about that.)

Do you have friends at school?

(Jack nods his head.)

What are their names?

(We have to wait for a minute, as Jack wants me to watch something that happens in PokeMon, that is on the TV.)
Jimmy, Alfie, Bonnie, Jack, Dawid, Jacob.

What are your favourite things?

(Jack points at the TV for Pokemon.) Minecraft, SCP’s don’t forget about that.

Anything else?

That’s all I can think of.

What about dogs?

Yes. (Jack nods his head and makes dog noises).

What do you want to do when you grow up?

I don’t know. I’m already a Pokemon trainer, I want to become a Pokemon master.

Thoughts on the interview

That is the interview with an autistic child brought to you by myself and Jack. Some of the key things, that I believe it shows far better than I could ever try and explain are. Just a simple question, isn’t so simple. If Jack knows you already know the answer, he just doesn’t see why he needs to tell you.

Staying focused is a difficulty, the TV was a distraction, but it would have been worse without it. The TV in the background actually helps Jack to focus. Without it, he would have been up and out of his seat within a minute.

Jack’s understanding is limited, and he needs a lot of prompting to help him give answers. He wants you to answer for him, why exactly i’m not sure. Perhaps it’s to do with anxiety. But as he proved a couple of times, he can give answers independently sometimes.

One of the big things comes in the last question, and is something I will do in more detail in a future post. Jack can’t differentiate between reality and fiction, to him Pokemon are real. He is a Pokémon trainer, and he wants to travel the world catching Pokémon.

I hope this gave a little insight into how Jack works, and also how we work with him. 7 fairly simple questions that took a lot more effort to get through than what would be perceived as “normal”. I think that sums up well, what life is like for autistic people and those that care for them. Thank you for reading.

Dad Does Autism