What’s it like being an autism Dad?

What’s it like being an autism Dad?

I mostly like to talk about Jack & Lily when it comes to autism, but today I’m going to talk about myself. I will be answering the question what’s it like being an autism Dad? It’s not a term I generally use for myself. Going around saying I’m an autism dad (or mum/mom) is not for me. But I wanted to open up a bit, and show you what it’s like to be a parent to two autistic children. I don’t want it to come across as having a moan about what’s difficult either. Sure I will have a look at the difficult things, but I have plenty of reason to be happy too.

Before I get started, these are my experiences with my autistic children. Every autistic person is different, the experiences we’ve had as a family wont be the same for everyone.

What’s it like being an autism dad?
photo of me worn out by the kids

Family and Sacrifices

First of all, we have been pretty lucky to have an understanding and supportive family around us. This is not always the case. I’ve heard some absolute horror stories, of people being completely abandoned by their family. Just because their child is autistic, and that doesn’t fit with how they want to be perceived.

This has not been the case for us, but there have still been challenges, and sacrifices made. We have missed lots of family outings. This is due to Jack’s anxiety, we are always invited, but whether Jack will go depends on the situation. Where is it? Who’s going? And how busy will it be? The last major one was my brothers wedding. We tried to prepare Jack for it, the day before the wedding he tried his suit on and said he was looking forward to it. Then on the day of the wedding, he just flat out refused to go.

Having to split the family

I ending up going with Lily, who gets a bit anxious in busy places, but settles if she’s with people she knows. Ideally I wanted Natalie and Jack to be there, I was disappointed they weren’t. But you can’t let these things get to you, it’s part of being an autism dad. We have to do what’s right for Jack. I rang later to see if he would come to the evening part, but he still said no.

Several birthdays and celebrations have been missed, or one of us have taken Lily. It’s nobodies fault, that’s just how it is. They’ve not all been missed, Jack has been out for family meals at restaurants etc.. Why can he do it sometimes, but not others? My best guess is it depends where his anxiety is? If he’s been having a difficult time at school etc, he will be less tolerant.

Jack & Lily
Jack & Lily our for a walk

Going out

Some families have real trouble ever doing anything, so again we don’t have it so bad. What you do need though is a thick skin, and if you’re like me and don’t have that, you need to develop it. Natalie has been around disability her whole life, so she was somewhat used to it. I wasn’t ready for it at all.

When we go out, even on Jack’s best days he will have some little moments. We will have people stare at us. It’s happened every time up until now, and it will happen every time in the future. If Jack has a full on meltdown, then we will have people gawking at us, and no doubt some will be judging.

To give you an idea of a meltdown in public. Imagine being stood outside the giraffe pen at the zoo, trying to calm down a 6ft tall 13 stone child. Who is just growling, whilst kicking, punching, head butting and scratching you. Whilst people stop to have a look, and then if Jack’s catches someone looking at him, he will go for them. So I have the added stress of stopping him hurting other people.

Learning and improving

After many years of learning we are more prepared for things like days out, which can mean preparing weeks in advance for a trip out. A spur of the moment day trip is not on the agenda. Jack needs to be prepared for it well in advance, whilst Lily tends to be okay, she too is more comfortable with this approach.

We get social stories and PECS ready so Jack is fully aware of what to expect. Then whilst we are out, we have to really watch Jack’s anxiety and sensory input. Where necessary we will apply deep pressure to keep him modulated. This might involve holding his hand, whilst we walk around and squeezing his hand repetitively. Or stopping to squeeze his arms and legs, jumping up and down together. Holding each other’s hands and pushing into each other, or waving your arms around like some sort of demented jellyfish. Sounds fun right?

Like I Said you need a thick skin, and it’s no good being shy, or worrying about what other people think. Days out are always stressful, but we do enjoy ourselves. I certainly have no intention of hiding away, especially when the kids want to go out and explore as much as they can.

Family
At a fireworks display

My own social life

Now I am going to talk about my own social life. To be honest I’ve barely had one, and that’s not completely down to the kids. I’ve had my own struggles with depression, and spent 10 years working full time. Then as soon as I’d come home Natalie would go to work, and I’d have the kids to look after. We basically had no money, so even if I felt like meeting up with friends, which wasn’t very often. I’d just wouldn’t be able too.

Due to circumstances, we’ve only ever really had my parents to call on as babysitters. Which we have done from time to time, and myself and Natalie have had opportunities to go out. I’ve never liked to ask too often though, as there have been stages where Jack has been a real handful. I’m in a better place now, and so is Jack so having a social life is a possibility, which again is more than some people have. Some have to do this all on their own.

Things to be proud of

Being an autism dad might mean you have to move the goalposts of what you hoped for your child, and that’s okay. Maybe you dreamed one day your son would play football for England, but it turns out them just being able to play with a group of other kids. Is something that can bring you just as much pride.

I have so many examples of these sort of things, that are simple everyday happenings for the average person. But mean the absolutely world to us. Things like Jack being able to walk into his school hall. Lily being able to walk into her classroom, with all her classmates. There are loads, but they can be for another post at another time.

Thank you for taking the time to read, and I just hope that it gives people a bit more awareness. Of what it’s like being an autism dad or mum, or autistic person.

Dad Does Autism

Autism and Food

Autism and Food

A subject I see talked about a lot on social media, is autism and food. It seems a lot of autistic people, especially children, have a very limited diet. There are different reasons why this might be the case, and it can go to extremes. A few years ago whilst being shown around a school, myself and Natalie bumped into parents of another autistic child. We had a quick conversation where they told us, their 7 year old son would only eat baby food.

Thankfully we’ve never had a problem with Jack, who I often refer to as the human dustbin. He doesn’t like spicy food, but other than that he eats pretty much anything. Lily on the other hand, is a different story. Before she had her own autism diagnosis, her “fussy” eating was a major concern for us. Now we know she is autistic as well, and that this seems to be fairly common. We have been slowly trying to expand her diet. So I’m going to look at what she eats, and how we are trying to expand her diet.

What Lily Eats

Like most kids she’s more than happy eating sweets, chocolate, cake and crisps. There are limits though, nothing sour, no jelly babies, only homemade icing, and only ready salted and quavers and wotsits.

The one good thing is Lily likes her fruit and veg, she will eat most fruits, other than oranges and other citrus fruit. She loves peas, carrots, broccoli, sweet corn and potato. After that though things get more limited, here’s a quick list of what she will eat.

  • Plain sausages
  • cocktail sausages
  • tinned beans & sausages
  • chicken nuggets (refusing recently)
  • boiled rice
  • plain pasta
  • white bread
  • Cream crackers
  • pepperoni pizza
  • burger (only recently)

She will also eat a few different cereals, until recently the milk had to be in a separate cup. Everything has to be plain, she won’t have sauce on anything, other can ketchup and gravy as long as they are in a separate bowl and not on the plate. Compared to what I’ve heard from others that’s not a bad list. It has taken some time and effort to slowly introduce new foods, or sometimes like recently. Lily randomly asked for a burger when Jack and I were having some.

Autism and food
Lily’s plain pasta meal

How to approach getting them to try new food

The way you approach getting your child to try new foods is very important, and that goes for any child not just an autistic one like Lily. I think we should be well past the days of, eat that or you’ll go hungry, that’ll teach them method. As my dad used to tell me, he was told by his dad. He half threatened that with me and my brother, but never followed it through.

When it comes to autism and food, you have to take the right approach. Just like with everything else with autism. The way we approach it with Lily, is the slow and steady approach. We always offer her everything that the rest of us have, and give her the choice to say yes or no. We get food in for her to try and offer it her. Only once, if she says no, leave it and try again another time. This has worked well with the fruit and vegetables. Keep showing her the foods and wait for her to become interested in them herself.

You never know what they are going to ask to try, I never expected her to ever want a burger. Just keep trying and it will take as long as it takes, Autism and food is not a subject that can be rushed. Getting Lily to learn to cook foods has also been helpful, she really enjoys it and it encourages her to touch different foods. Often it’s not the taste that’s the problem, if they won’t try it, how can it be? It’s the look, the feel and the texture of the food. Until recently I had to pick every last bit of cheese off of her pizza, before Lily would eat it. Now she eats the whole thing, perhaps making her own pizza helped with that? Click to see Lily’s pizza post!

Setbacks

Unfortunately like a lot of things with autistic children, there can be setbacks. Lily has visibly been finding things more difficult, the longer the current “lockdown” situation has gone on. As much as I’ve tried to keep her entertained, she struggles without her routine just like Jack does, and is missing her friends from school.

She has been saying she doesn’t know what she wants to eat a lot, and saying no to a lot of the things she’d normally eat. Thankfully pizza and roast potatoes and vegetables still always get a yes. I hope this is because of the anxiety and uncertainty of the current situation, and she will eventually go back to eating how she was.

We will have to see how that goes, taking the same approach as with new food. Offering it with no pressure, and letting her take her time. Are there any parents of autistic children in the same boat as us? Has the lockdown brought problems like this to the surface? And how have you been dealing with them? I’d love to hear from you in the comments. That’s all from me on autism and food, thanks for reading.

Dad Does Autism

Autism and Minecraft

Autism and Minecraft

The first time I ever heard of Minecraft was when Jack asked to have the game. I had no idea of the strong links between autism and minecraft. A quick google of autism and Minecraft will bring up lots of results. It seems to be something that attracts some autistic people, and as is often the case. Once it becomes a special interest, it becomes an obsession.

Minecraft is even being used in therapies, to help autistic children learn things like social skills. You can apply for a specialised server for autistic people, called AutCraft, which is said to be a safe haven for autistic children to play Minecraft. Jack just plays on Minecraft normally, and it’s for fun.

The joy of building something

When you successfully build something, it gives you such a great feeling. No matter what it is, big or small, you still get that feeling of achievement. I talked about how Lego provides that for Jack in “Is Lego good for autistic children”, click the link if you haven’t read that post before.

Of course with Lego you are restricted to what you can make. In the computerised world of Minecraft the possibilities are practically endless. You can go wherever your imagination takes you. 

Using Minecraft to express feelings

The other day Jack was very excited to show me a laboratory he made. He then told me he had the coronavirus inside it and was working on a cure.

on top of the coronavirus lab

I actually felt quite emotional and proud that he was thinking of doing that. He has found it difficult to understand, what is going on in the world right now. Trying to express his own feelings on the matter, hasn’t been easy either.  We have spent a lot of time of time, trying to learnt what Jack is trying to say to us, when he is unable to do it directly.

This was Jacks way of showing us he is worried about the coronavirus, and wants there to be a cure found. So that everything can go back to normal. When he does something like this, it gives us the opportunity to ask questions about a subject he doesn’t like to talk about. 

He won’t communicate about a subject he is anxious about, and if you try and force the issue he’s even less likely to talk. This was showing us he was ready to talk about the coronavirus. Only a few questions, with short answers and nods of the head. But enough for us to get an understand of how anxious and worried he is feeling, and now he knows we know.

Jack’s favourite builds

That was an example of how autism and Minecraft work, to help an autistic child communicate with his parents. Let’s finish with something more fun. I’ve asked Jack to share with you, the favourite things he has built on Minecraft.

Some of the favourite things he has built include, Freddy Fazbears Pizzeria, a nether portal, and the Kanto region in Pokemon.

His absolute favourite is the SCP 250 foundation facility. Don’t worry if you don’t know what that means, I don’t really either. Here is a brief explanation of what SCP is.


You can click here if you want to find out more about it. There’s a couple of pictures below to showing the facility that Jack has made.

Minecraft & autism
Full facility

an SCP in its containment pod

There have been a lot of posts involving Lily recently, so it was fun for me to get Jack involved again. For those of you out there who’s kids like playing on Minecraft, or even you yourself. What do you enjoy building on there. We’d love to hear from you. Leave a comment below.

Dad Does Autism

Easy to understand Online safety social story

Easy to understand Online safety social story

Keeping your children safe online, is something all parents have to think about these days. We were given a easy to understand online safety social story by Jack’s School. I believe in giving Jack as much freedom as we possibly can. About a year ago we ran into some problems online, with Jack using TikTok.

If you are not aware of TikTok, it is a social video sharing app. Jack discovered it and became obsessed with making videos. He does all sorts of stuff with the videos, adding music, filters and stuff beyond what I know how to do. I personally think it is a great creative outlet for him, and encourage him to work on his videos. Here is an an example of the type of things he does.


Message problems


The problems came with it being a social media app, meaning you could message people. Something Jack wanted to do. You can turn messages off, which is what we did, but it didn’t take Jack long to figure out how to turn them back on.

The problem with Jack messaging people is his lack of understanding of how the real world works. If someone tells Jack they are his friend, he will believe that without question. That obviously has massive safety implications. Jack also can’t separate reality from fantasy. He would think something he watched in a movie was real life.

We have made some slow progress trying to explain these things to him. He has acknowledged these things when talking to him, but it’s difficult to know if he’s saying things just to shut Mum and Dad up. Jack has learned how to say things, to be able to get what he wants. We had problems explaining this to school at first, but they’ve seen it now. Jack is very clever at getting what he wants.

a different type of video

Jack’s trouble with social interaction

The other problem that Jack has in all walks of life. Is people see this 6 foot tall, well built person and think he is a lot older than he is. Add the fact his understanding levels are less than his age. This leaves a massive gap between what people expect of him and what he can actually do. Although his autistic traits are becoming more profound with age. It is not always obvious to people that Jack is “different”, until he speaks. With new people or someone you bump into out and about. Jack’s anxiety means he can get flustered and mix up his words.

When he talks to people, the conversation can be very one way, unless you know him well. Then you might be able to get a two-way conversation out of him, but only if Jack is willing. So when we found he had been messaging people, what we found was Jack bombarding people with talk about a subject. Often annoying the other person, as he wouldn’t stop.

Easy to understand online safety social story

We talked with school about the issue, and they worked on it at school and provided us with a social story. We now make our own using Twinkl, which is a website I highly recommend. I wanted Jack to still be able to make his videos. It is a great creative outlet for him, and something he really enjoys. But we had to make sure it was in a safe environment, so we went through the social story with him.

Online safety social
Story part 1
Online social story part 2

We took the step of deleting TikTok from Jacks phone, and made it so he couldn’t sign back into it. Unsurprisingly Jack wasn’t happy about this, but we came up with a solution that Jack has accepted. I have the TikTok app on my phone, and he is allowed to use it as long as we see what he’s made before he posts it. To be honest I enjoy watching the videos anyway. Also the messages have to stay turned off.

He asks to have it back on his own phone every now and then, but that’s not happening yet. It does mean I have to give up my phone when he wants to make videos, but I can live with that.

Conclusion

I know what you let your children do online and with technology is a divisive subject. It is an area where Jack thrives and even excels, in a world where he struggles with so many things. For that reason I encourage him in the area as much as possible, but of course always wanting to keep him as safe as possible. That was one of the reasons why this blog was started, to give him a platform where we can do stuff together. Something he is really excited about, and why we have the Jack’s documents section on the website. It’s important to have fun and be creative, but you always have to stay safe at the same time.

Dad Does Autism

Step by Step Homeschooling  Success

Step by Step Homeschooling Success

For today’s post, I am stepping aside for Jack & Lily’s Mum. To take you through step by step a homeschooling success with Lily. I mentioned some time ago that after Lily’s chromosome micro deletion diagnosis, we had been tested for it. The results came back that it was passed on from Natalie. Her understanding of the kids has always been amazing, this perhaps explains where it comes from, especially with Lily. As I didn’t write it, I’m quite happily to boast that this post is an amazing insight into homeschooling and communicating with the children. Something I’ve been really struggling with myself.

Step by step homeschooling success

Hi everyone I’m Natalie, Adams partner and mother to our two children Jack and Lily.

Today has been a good day. This afternoon I came downstairs to play with Lily whilst Adam got a few bits done. Lily and I was having a big tickle fight, she absolutely loves tickle fights! This distracted her from wanting daddy too.

Happily chasing her round our living room saying ‘I’m going to get you’ lily happily laughing her head off waiting for me to catch her. She collapsed laughing on the sofa whilst I was tickling her. As Lily was in a good mood I thought it would be a good opportunity to see if she’d do some schoolwork. Now we can’t mention the school part as Lily becomes far too distressed, and anxious at the very thought.

Getting started

So instead I said “oh look what I’ve found, I wonder if you can put this sentence together” Lily laughing replied happily “oh yes I can” so the “oh no you can’t” game starts. It’s always best to keep Lily’s interest where possible so I always try my best to keep tasks to interests of hers. Before we knew it Lily had completed the worksheet finding it interesting and no pressure of it being schoolwork she was enjoying doing it.

So I turned the page over to Lily’s delight all that she needed to do was copy the sentences putting capital letters at the start and full stops at the end. Lily wizzed through this page, “Mummy this is easy”. Every step of the way I tell Lily how well she’s doing, how proud of her I am and how clever she is. Lily likes praise so doing this throughout encourages Lily to carry on. Of course at the end of each sheet we add a quick tickle fight in and big praise for how amazing she’d done to complete the sheet.

The joy of maths

Still on a high note with the odd tickle in between Lily was happy to carry on still unaware it’s school work. Lily wanted to now do a maths sheet as maths is her favourite. See with maths it’s more black and white than English, her answers are either right or wrong which is more straight forward so she can cope with this.

Lily turns to number lines and with my guidance on how to work the sums out, Lily happily sat next to me smiling away giving me her answers with a little doubt in her voice. So I decided to make out I had no idea on the last 5 sums. I was pretending to act surprised and shocked when she gave me the workings out and answers. Lily really enjoyed teaching mum instead of mum teaching her. Making it a game seemed so much more fun and kept Lily’s interest throughout.

Incorporating an activity Lily loves

Subtraction was next only it was a picture of an elephant with sums in squares. She needed to solve the sum in each square, to be able to then colour the square in with the right colour from the chart of answers above. Lily loving arty projects I knew this was perfect for her. She has no confidence with subtraction and my maths isn’t brilliant. So I showed Lily how to use a number line to help her do the sums.

Colouring the elephant
Working hard


Throughout this sheet Lily wanted to guess which colour that square was, then do the sums as this kept Lily’s attention. So that’s what we did. We would both guess a colour first then work out her sums to see who was right, making this as fun as possible I’d say ‘oh no I got that one wrong’ she absolutely loved this. Lily took great pleasure in doing these sums so she could colour the elephant in. With her loving art this task is a fantastic way for lily to engage in learning, and be able to combine art together. Lily only saw this as an arty task, and had no idea she was learning along the way.

Homeschooling success coloured elephant
The completed elephant

Then Lily’s meltdown hits hard

Her final sheet was reading comprehension on Honeybees. Lily chose this sheet as she wanted to learn more about wonderful Honeybees.

Lily was fine whilst I read to her the information sheet which contained the answers for the questions on the following page. However Lily’s mood quickly changed, on the first question seeing she needed to write a medium size sentence, and thinking she needed to do this for every question. Lily started becoming distressed and a meltdown started. Crying, upset and anxious Lily kept repeating that ‘it’s too much’ ‘No one likes me’ I can’t do it’ ‘I’m too stupid’.

I sat next to Lily calmly, and spoke quietly as well as calmly to her, holding her by putting one arm round her and gently applied deep pressure by hugging her. I calmly said ‘Lily it’s ok, your very clever, look at all these sheets you’ve done. Wow your so much cleverer than me! Lets take a few minutes, it’s ok.” I was already seeing this as a big homeschooling success, but I wanted to see if we could do this last piece of work.

Controlling the anxiety and sensory overload

At this point I invited Lily to stand up with me and to walk round our living room calmly. I then sat down whilst Lily did 10 big jumps, at this point Lily sat next too me. I calmly mentioned how good the picture of the honeybees was and the interesting fact about their wiggle dance. We were soon both laughing, and having ago at their wiggle dance.

I then calmly said let’s give this question a go. I wonder what we can learn about honeybees, let’s do it word by word. At first Lily started to become upset again crying, but by remaining calmly at her side and just gently reminding her that it’s only one question. Which is about the difference between bumblebees and honeybees. By taking it one word at a time she’s so clever that she could do this. Still crying she reluctantly carried on writing out her answer. At this point Lily started to say she was tired so we finished this question and had a 5 minute break.

To keep Lily interested I started asking what colours are bees? She said black and yellow so I quickly replied with oh wow look your using a black and yellow stripped pencil it looks the same as bees. Lily was excited by this, laughing she said “Bees will think this pencil is another bee mummy and the end is there sting” this encouraged Lily to carry on.

There’s nothing wrong with giving a little help

With Lily struggling to read, I would read the section of text again. Where the answers to each individual question were in. Once I had read the information to her, I would repeat the question. Giving Lily plenty of time to process both what I had just said, and for her to find her answer.

Lily has always needed extra processing time. So by allowing her this extra time I was removing pressure and avoiding the meltdowns that would follow. After a few minutes I would gently guide Lily if she had not given me any answers. Again this would be done in a playful manner “oh Lily I think it’s somewhere on this line, what about you?” At this I was directing Lily towards the answer without giving it to her.

With reading Lily struggles to read text when it’s black text on white paper. She has previously said the letters/numbers move about. Which is common for children and adults alike, that have learning disabilities. So Lily uses a little slip of red see through plastic sheet, that she puts over the text to make this stand out more. Therefore making it easier for her to read. This also makes it clearer for Lily to read and stops the letters/numbers moving about on the page.

How we helped Lily to Read


The sheets we use and that I used as a child, are coloured projector sheets. If you wish to try this with your child,to start with you’ll need the different colour sheets. Then get a piece of text the text being black on a white piece of paper. This could be in a text book, worksheet or something you type up on a Microsoft word account and print out. Sit with your child and have this document with you. Then simply place the text infront of your child and then place the different coloured sheets over the page with the text, on doing each colour sheet individually.


Each time ask your child if they can see as well as read the text easier with the coloured sheet on the page. At the end ask which colour sheet makes it easier for them to read. At this point you may need to place a few sheets back over the text for your child to be able to say fully. Each child is different so may find different colours suit them better than others.


Then going forwards when doing readings or writing tasks with your child use the colour sheet to place over what your child is reading. I would recommend having a few spare colour sheets that your child prefers. We’ve also designed it so it’s cut to the size of a sentence or 2 so Lily doesn’t always need the full sheet, and it helps Lily to identify where she is within the text.

You can buy these in most places, here’s a direct link to amazons website where it’s tends to be the cheapest place to purchase them. Should you wish to try them with your child. https://www.amazon.co.uk/Assorted-Colour-Acetate-Transparent-Plastic/dp/B00Y0VDRZK

Finishing the work

Homeschooling success


Knowing it would be too much for her to write full sentences, like the worksheet asks. I instead just asked Lily to simply write the answers below the questions to reduce the pressure on her. As Lily worked her way through the questions she’d become a lot happier. Talking freely about things she’d already learnt about honeybees and putting that together with the sheet. One question Lily didn’t require any help with, and she was very proud of herself for this, as she should be. Then the last question came. This was a fascinating fact about honeybees. Lily wanted to say about there wiggle dance, so she copied the text to answer the question, and every so often we’d be laughing as we’d have a go at the wiggle dance.

This completed Lily’s worksheets for today. At the end I could not believe she’d completed 6 worksheets. The whole time I’d made it fun and interesting keeping her mind busy, and not at any point did I mention that it was schoolwork. She was allowed breaks including movement breaks, as Lily is very hyperactive, and struggles with staying still. This was a huge homeschooling success. More importantly Lily was super proud of herself. At no point did I actually think Lily would take part, or that she’d work through her meltdown with me. Then come out the other side happy and excited.

Lily’s reward for doing all these sheets was to play hide and seek with daddy and her baby doll who she hasn’t given a name yet. She was very excited about this and very proud of herself.

We never claim to be super parents, and homeschooling has proved difficult. Today was the most work Lily has done in a day, and we are so proud of her. Do you have any homeschooling success stories? How are you engaging your children in learning? Leave a comment below. The

Dad Does Autism

Time for a water fight!

Time for a water fight!

A water fight has been the end result of a difficult week. We have had a problem getting Jack to come outside for the last few days. He first said he didn’t want to go outside on Monday, it’s not unusual to have days where he doesn’t want to go out. So I just left him, as trying to force the issue would be counterproductive. After the same thing happened on Tuesday, and then again on Wednesday day, we started to become concerned.

Jack eventually told us, that he wouldn’t go outside because the coronavirus is there. We told him it was perfectly safe to go in the garden, but unsurprisingly that wasn’t enough to convince Jack. I reached out on twitter, and got lots of responses with ideas to try and get Jack outside. I’d like to thank everybody for their help. We will be trying everything, even if not now, it is likely Jack will need reassurance again before this is all over.

Plan A

The first idea was to use our Guinea Pigs to get him outside. He always loves it when we get them out, especially if we just let them roam free on the garden. It worked to get him outside for about 10 minutes. Unfortunately it was a lovely sunny day, which meant there was lots of wasps, hornets, bees etc.. buzzing about. Jack hates anything with a buzz, and had a fear of wasps after a nasty encounter with a wasps nest at his grandads house when he was younger.

Jack has spotted a wasp!

So now we are fighting on two fronts. Back to the advice from twitter. Another social story, but concentrating on going in the garden is something we have looked at. Someone also shared this book with me, which you can read by clicking here.

Starting fun activities we know Jack will enjoy. Mentioning to him what we are doing, and leaving the doors open for him to join in if he wants too, with no pressure or demand on him. Lily wanted to have a water fight, and whilst we weren’t going to directly ask Jack if he wanted to join in. Lily as always soon went for the direct approach, and asked him to join in.


As usual, Lily had more success than we do, and Jack came outside. We did it late afternoon, with the idea that their would be less “buzzing” things about. It was a resounding success, Jack stayed outside for quite some time having a water fight with Lily, and even watering the plants in the garden.

Time for a water fight

The thing that really made me laugh, was that the two kids that will scream blue murder and the mere mention of washing their hair. Decided to tip water over their own head, after the photo below they did it with a bucket.

They then turned their attention on me. I absolutely hate water fights. I hate the feel of the water. I tried to make a run for it, but there was no escape.

It was great to see Jack not only outside, but also having a great time playing with his sister. It gives me optimism that we can keep getting him outside, in the sun and fresh air. As long we make it fun and do it on his terms.

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.

Coronavirus Social Story

Coronavirus Social Story

I wanted to share a coronavirus social story, that was kindly sent to me by someone on twitter. Obviously it is a very worrying time for everybody at the moment. These are unprecedented times in all our lives, and after the announcement from Boris Johnson last night. That we are basically in lockdown, it is getting more and more “real”.

The challenging behaviour from Jack over the weekend rose dramatically, from where it has been recently. It wasn’t a surprise, and I knew it was down to what is happening. Lily is also showing signs that she is struggling. First thing Monday morning she was sick in the bathroom, the first day of no school. This is an ongoing issue with vomiting, that we are not sure if it’s anxiety or allergy related, which I’ve talked about before.

Something amazing

Jack did something amazing yesterday, after sitting down and talking to him. He told us he was scared and confused by the coronavirus. This is such a massive thing. A lot of the problems Jack has, come from not being able to communicate effectively, or express his emotions. So for him to do that was incredible. 18 months ago I would have thought it was impossible. It’s yet more evidence of how far he has come.

He also asked for a Coronavirus social story, to help him understand what is going on. We told him we would get one for him. Last night a very kind person emailed me one. It is very good and Jack is very happy witH it. It’s so important to find a way to explain what’s happening.

Jack had already calmed down and appears less anxious. Of course it will take continuous reassurance, and revisiting this social story. But we will do whatever it takes to make Jack and Lily feel safe.

I thought it only right to share the coronavirus social story in the blog, for as many people to see as possible.

There it is, I hope people find it useful. The autism and SEN community on twitter can be a wonderful and helpful place, as was proved again here. If you want to make your own social story for this or any other subject, I highly recommend Twinkl as a great resource. I hope everyone is coping well in these difficult time, stay strong everyone. Please feel free to share any resources or ideas to help people get through this difficult time. Thank you.

Is Lego Good for Autistic Children?

Is Lego Good for Autistic Children?

With Coronavirus taking grip of the country, we are staying at home and avoiding the madness. So I got to thinking, Is Lego good for autistic children? I’ve seen a lot of stuff around the subject online, they are even doing Lego based therapy. Where they get children working together, to encourage learning and interaction with others.

That’s not something we have ever tried, but Jack has an incredible love for Lego. I dread to think how much money we’ve spent on it over the years. To make matters worse, most of it is broken up in a big tub. He recently expressed a wish to be able to keep his Lego safe, and not get broken. Which was nice to hear. Oh how he is growing up.

Lily has Lego as well, but it has mostly been built by me. She enjoys seeing the finished product more than the building phase.

The positive points

There’s no intense research done here, it’s just my observations on Jack. And as Lily proves, it won’t be the same with all autistic children. But for Jack, Lego has had a hugely positive impact on his life. Here are the areas I’ve seen a positive impact

  • The building process having a calming effect
  • Learned to do something independently
  • something that keeps him off technology
  • Pride in achieving a finished product

Calming effect


Those are four very important points. Finding things that have a calming effect are so important to autistic people, especially as many also have issues with anxiety. We are forever searching for new calming strategies. Lego isn’t an option if a meltdown is well under way, but as a preemptive tactic to keep Jack calm it works well.

Acting independently

Doing something independently is a huge thing for Jack. It’s not that he doesn’t have the physical capabilities to do things on his own. But getting him to act independently is extremely hard for a variety of reasons. One of the main ones, is Jack needs constant reassurance that he is safe in his environment. In his bedroom he seems to feel more assured, and he’s learnt that is his space. But anywhere else, even other rooms in our house, he needs constant reassurance that he is ok and is safe. In order to be able to concentrate on a task.

With Lego he will sit and build by himself. He will ask for help with putting stickers on, and if pieces get stuck together. Other than that he will do it on his own. Sometimes he asks me to come and build something with him, but I believe that’s because he wants the company.

Keeping him off technology

Jack has some sort of technology going most of the time. It’s part of his way of dealing with his anxiety, coping with his environment and feeling in control. It’s not ideal, but he always needs to have at least some background noise. When outside, and depending on what we are doing his phone might go in his pocket. But that’s about it.

So there will always be something on in the background, whether that’s the TV, music or something playing on his phone like YouTube. But once he is building, his main focus is on the Lego. Jack loves to be outdoors, but when he’s inside it’s difficult to get him away from his Xbox or the TV. Lego is one of the best ways to do it.

Pride in his creations

We all take great pride in achieving something, your autistic children are no different. Autistic people often have difficulty showing emotions in a way that the “average” person understands, but they absolutely feel emotion. Regular readers will already know that Jack & Lily to great pride and excitement from showing off their works on here at Lily’s Art Gallery and Jack’s Documents.

He takes great pride in his Lego, which is why he now wants to make sure they are looked after. He’s still got plenty to build from Christmas and his birthday to keep him busy for a while. Here is what he currently has under his bed to keep them safe.

Answering the question

So to answer the original question. Is Lego good for Autistic children? I think the general answer is yes. Of course nothing is going to be right for everyone, but there’s plenty of evidence to say it’s a good thing. From our perspective it’s been a very good for Jack.

The popular Lego at the moment seems to be Hidden Side, you can find it here on amazon (affiliate link – if you happened to want to buy some Lego, I’d receive a small commission if you used this link) of course Lego is expensive, but there are cheaper alternatives out there that you can find in places likes Wilkinsons and Poundland, or on amazon – click here for another affiliate link.

Does anyone personally, or does their children use Lego a lot, and get as much out of it as Jack does? What other ways do you use as calming strategies? What other interests do people have that keeps them and their children engaged. There are so many ideas out there and I am always looking for new ones. Let me know in the comments below.

The easy life of carers

The easy life of carers

It’s been a very busy week involving school and health issues for the kids. I’m working on a post about school, but first I wanted to talk about something else. What some people perceive as the “easy life” of carers. I know some carers get very annoyed and angry at people who think like that. Personally I try to just laugh off their ill informed judgment.

Firstly, the paltry sums of money families living with disability are given, pales into insignificance compared to the cost to the country, if we all turned around and said we can’t do it anymore. The cost to the country would be astronomical and probably couldn’t be met.

Breaking point

I’ll be honest in saying we have been on the brink of breaking point, on more than one occasion with Jack. His sheer size and violent behaviours were the issues for us, but everyone has their own problems. None are “easier” than the other. The demands on parents/carers are massive, and greatly under appreciated by too many.

The care part, is only half the story though. Looking after your child or children is a full time job itself for many. The demand of the physical care is full on. Then with something like autism, the “invisible disabilities” where what the problems are aren’t clear. You have the time and effort to just work out what the problems your child is having. This can sometimes take months and even years of research, discussions, meetings and trial and error of strategies.

A week of appointments

I’m looking forward to tomorrow, as we don’t have any appointments for the first time this week. It’s been a full on week, and it’s left me feeling tired. These appointments, which like with everything vary in nature depending on the child and what their needs are. Are something that if you’ve not experienced it yourself, are difficult to comprehend. Which is why some people fail to realise what is involved with being a carer.

To give people an idea of just how full on things can be, I’ll go through the first four days of this week.

The week that was (Lily)

Monday – Doctors appointment for Lily. With the GP regarding her problems with anxiety, and to get a CAMHS referral. On the surface this looks the simplest task there is, but unlike Jack we are just starting out with Lily, and have feeling like we have no idea where we are or what to do. So the time and effort trying to think up strategies and solutions has been massive.

Tuesday – Lily’s parents evening. Two appointments required, one with her teacher and one with her SENCO. This wasn’t your average turn up and hear how they’ve been doing parents evening. It was arranged to also talk over Lily’s issues and needs at school, which have really escalated quite quickly over the last term.

Putting together a plan to get a EHCP was discussed. Unfortunately Lily’s infant school was terrible, and the head teacher didn’t believe Lily had autism. So no evidence of any needs for Lily were passed over to her junior school, which has been helpful (high levels of sarcasm here).

The school were very honest, and agreed with us that Lily needs an EHCP. That she is struggling in mainstream school, and will eventually need to move to a SEN school. The good news is she is progressing really well with her work. The school have been really good, and provided lots of support despite not having any funding for her. I can’t speak highly enough of them. I don’t think we could find a better mainstream school to go through this process with.

The week that was (Jack)

Wednesday -The focus changed to Jack. It was his Education, Health and Care Plan (EHCP) review. We had to go to Jacks school and the review was with the school Deputy Head, Jack’s teacher and a school psychologist. Including travel it took 5 hours.

If you are unaware of what a EHCP review is like I will give you a brief idea. Big sheets of paper stuck onto a wall with various headings. We all write onto the sheets, things that are working, things that are not working. Then what needs to be worked on going forward, and how we are going to do that. This type of thing is mentally tiring on any subject. But imagine that subject being the health and well being of your child, and you get it wrong it’s them who suffer. Can you imagine that pressure? I felt exhausted Wednesday evening.

Thursday – No time to rest. CAMHS came to do a health pre assessment on Jack. Basically ten questions on different aspects of your child’s health, where you have to decide whether they fit into the category of, no additional needs, Low, Moderate or High. With the exception of challenging behaviour, which has two added categories of severe and priority.

You have to evidence each one, for it to go forward to a review, where we put the case forward to get Jack some health care funding. Although not the only thing, the major area for Jack is challenging behaviour. In order to evidence Jacks needs, we need to keep a log of all Jack’s challenging behaviours. The last thing you want to do after dealing with Jack having a meltdown down, is have to go and write about it straight away. But whatever needs to be done, we will always do.

Final thoughts

Myself and Natalie are lucky that we have each other for support and help. I know people who are doing this on there own. Some have more than two kids they need to be carers for. As for this easy life of carers then. Carers should be treated as heroes, not frowned upon like they are in some quarters. We are saving the country money, we are not a burden, and far too often people are doing it with little to no support.

We are fortunate to be receiving good support, but that’s not always the case and more needs to be done to help carers and those they care for. As always I welcome any comments and if anyone wants to share their experiences? That would be great.

One final thing. During the CAMHS visit they said we should write a book as they are amazed with what we’ve done for Jack. We both laughed. They said they were serious, or do a blog or something. I told them about this blog, and they said that was great and asked permission to share this with professions and parents. It blew my mind. I was so incredibly flattered. It made feel the decision to do this was the right one, and that I am doing something that is truly worthwhile.

Click here to go to a Beautifully written piece by an unknown author, that’s fits this so well.