Daddy and Lily go to the park

Daddy and Lily go to the park

It’s finally stopped raining and the sun has come out! Jack went went out with support workers from DAS this morning. The first time he’s done so on a Saturday. He was looking forward to it, but with anything that’s new. I could sense a bit of anxiety. This created the opportunity for Daddy and Lily to go to the park. It had been a while since we last did this.

Daddy and Lily go to the park

We got ready and off we went. As usual I ended up carrying a football and a scooter. It’s about a 10 minute walk up a hill, to the park we went to. Lily always starts off on her scooter. I always end up carrying it up the hill. Apparently it’s what dads are for.

The park was quite muddy, and it was clearly too soon for sensible people to be venturing out. As the park was completely empty. Luckily we aren’t sensible and enjoyed the mud. Lily thought it was great having the park to herself. No waiting to go on anything! The zip line is her favourite thing to go on. She always wants me to basically throw her down to the other, as fast as I possibly can. This makes mum very nervous. But she wasn’t there today…

Lily goes shopping

When we were finished at the park. Lily wanted to go to the shop. She got a little trolley to push around. She was really pleased with it, and had a great time going around the shop. She had a limit of how much she could spend, and was very sensible in making choices.

We took a different way home, to see if we could see any horses out in the fields. Lily loves seeing the horses. Unfortunately there was only one out today, and that was quite far away from us. Still, Lily enjoyed saying hello.

We got back just before Jack. He said he had a nice time when he was out, but after Lily shouted. He went to the dining room, and wouldn’t talk. He was in there for about an hour. Jack does this when he is upset, and you can’t rush the issue. You have to wait until he is ready.

Jack struggled this afternoon

He went out into the front garden, still not talking. He likes to do “ninja moves”, it gets some of the aggression out. It started raining/hailing, the sunshine obviously couldn’t last, so I told him he needed to come inside. He got aggressive and needed encouragement to come inside. He wasn’t happy but eventually he went up to our bedroom.

He said he wanted to watch Netflix in our room. So we let him. Eventually he started talking again, and finally I got out of him what might be wrong. Lily had got sweets from the shop, and he hadn’t. It can often be little things like this that you overlook, that cause the problems. Usually Jack buys sweets when he goes out, but this time he didn’t.

Then he remember he had left some in his bag from Monday. He got them and then he was happy again, but it probably all started from the change in routine. Now we are watching Jurassic World and all is good.

Special Interests

Special Interests

When people are talking about autism, something you are likely to hear a lot about are Special Interests. Lily has a big interest in sports at the moment, she recently passed her next level at swimming lessons which she was really pleased with. We are so proud of her. She hasn’t found swimming easy, but has stuck at it and never wanted to give up. She has shown great determination to achieve this. To see her so pleased with herself is such a great feeling.

She has also been to a couple of different football clubs, which is something she really enjoys doing. It’s funny, because if we play football in the garden, we have to play like it’s a training session. We have to do practise drills, and I get told off if I don’t behave. We currently have a book that we are booking through.

Special interests


Jacks’s special interests

If you follow me on twitter @DadDoesAutism you might have seen that Jack wants me to do something. He is desperate to do things that can be put on the website. Out of nowhere last night, he decided he wanted me to help him write a “document” on the T Rex.

My immediate thought was that sounds like hard work. Just showing Jack figures on google aren’t going to cut it. He loves to go into real depth on his Special Interests. When it comes to his interests like Pokemon, Secure Contain Protect, Minecraft and dinosaurs. His ability to retain facts is incredible.

Having had the time to think about this request. I think it’s something he’s desperate to do himself, but he doesn’t know how to do it. His writing and typing skills are not at the level required, to do the type of in depth report Jack would want to do. So he needs my help. 

He often talks about wanting to be a scientist or researcher or something similar when he grows up. I think it’s important I try and do this with him. He does very basic stuff at school, and I think he’s craving for more of an intellectual challenge. In the comfort of the home is probably the best place to try this. I will talk to him today and see what he wants to do, and go from there.

Jack loves showing off what he does to people. So I expect he will want me to show it on here. Since I said I will make a art gallery for Lily on here. He has been desperate to contribute somehow. Which reminds me I need to crack on with Lily’s Art Gallery, and Jack wants his section to be called Jack’s Documents. This will be where you will be able to find all the posts, about Jack and Lily’s special interests.

Dad Does Autism

Autistic People Going To Concerts

Autistic People Going To Concerts

Wednesday was a fairly quiet day. Nothing much of note happened, which is why I chose to talk about Jack’s social story and how important they are. Today I wanted to approach the subject of autistic people going to concerts or other types of live performance. But first I haven’t yet mentioned that on Tuesday Lily went to the opticians. She will be getting glasses on Friday . 

She is really excited about wearing glasses. I’m not really sure why, but I’m not going to spoil that excitement for. Her eyesight isn’t particularly bad, but it could be the cause of the constant headaches she is getting. So that’s what they are for.

Jack wants to go to a concert

On the way to school Jack listens to the radio station Capital FM in his taxi. He now loves talking about Capital, especially the presenter Roman Kemp. Who is on every morning for the drive to school. 

Jack told us that he wants to go to Capitals Jingle Bell Ball this year. He has never expressed an interest in going to any sort of concert before. So it came out of the blue. But he has been getting a lot more interested in music the past year. So it perhaps shouldn’t have been a big surprise. Previously Jack expressed interest in going to a WWE show, but his interest in wrestling has faded.

We are always of the mindset, that we will give Jack and Lily every opportunity to do the things that they want to do. So we told him we can look into it. To be honest, I know absolutely nothing about this concert. Until Jack recently started requesting it whilst in the car. It wasn’t a radio station I ever listened to. So I will have to do my research on it.

One concern I have about taking Jack came up straight away. When Jack said he will get to meet Roman Kemp. We had to tell him that you don’t get to go and talk to the performers, when you go to a concert. He said ok, but I’m not sure he understood and I think he’s still expecting to be able to meet him. So we’d have to work on that, before deciding to go to any sort of concert.

Something we can all do

It’s something Lily would really enjoy too, so it’s definitely something for us to look into. Something that we could do as a family. Which would be nice. We often take Lily to things when Jack is at rest-bite because Jack doesn’t want to go. I think knowing Lily is doing things that he’s not, is encouraging Jack to not want to miss out. Which I guess is good, because I don’t want him to miss out on things either. We just have to make sure it’s done the right way, so Jack can cope and enjoy these things.

Jack being in a large crowd worries me, but we’ve never tried anything like it before. So we don’t really know how he’d be. Starting off going to some sort of small concert might be a way to start? I really don’t know how it would go. I’m looking for peoples experiences of autistic people going to concerts. Has anyone taken an autistic child to a concert? Or if you’re autistic yourself and go to concerts any advice would be greatly appreciated. So we can plan making this a possibility for Jack. Thanks.

Jack’s Social Story

Jack’s Social Story

Yesterday I talked about Jacks trip to the Hospital, to have blood samples taken. This was to check for Chromosome Micro Deletion 15q11.2, which is what Lily has. He is also having a wider array of genetic tests done. This is to also check for other things like Fragile X syndrome, and to see if there’s any reasons for him being so tall for his age range. I mentioned Jack’s social story that he used to help him cope with the experience.

I wanted to share with everyone the social story we used, and how we used it. We don’t use PECS continuously with Jack for everything while at home. However we do when we take Jack out, especially to a new place. There are many different styles of PECS and social stories. Natalie put this one together using Twinkl. Natalie has membership for this website, which allows us access to thousands of resources, such as PECS and a wide variety of educational tools from early years to adulthood, including a fully kitted out section for us parents. There’s also free downloads for those without membership. This is the story we used.

Using the social story

For people who have been around autistic children, this will probably be a familiar sight. If you haven’t then what this is used for is, to explain to Jack what he is going to be doing. Just telling Jack what he is doing isn’t enough. He fails to fully understand what you are saying. He also needs constant reassurance through the whole process.

This is where the pictures are really useful with Jack. We have all the pictures separate and I keep hold of them. I give Jack the first picture and he keeps hold of it. Then as we get ready for the next stage I swap his picture for the next one. This means he has the picture of what he is supposed to be doing. Which he keeps in his hand as a reminder, and he can keep looking at if he feels like he needs to. He also had both of us talking to him, which he also requires.

Yesterday this worked extremely well for Jack. He stayed fairly relaxed for Jack, and coped so well. As with everything autism related. The same things don’t work for everyone, as the spectrum is so wide and varied. But this is something I would definitely always recommend people try, if they haven’t before. Have you used social stories? If you have I’d love to hear about how you found them. Please leave a comment about your experiences with them, positive or negative. Thanks.

Proud Dad Day

Proud Dad Day

Lily goes back to school

Today is a proud dad day. Monday morning never proved to be anywhere near the stress I imagined. Lily went back to school. She was up early and came into our room. There was some tears, but after a talk and some reassurance. Lily went down for breakfast and was fine from that point on.

It helped that Monday mornings she does a thing called Trailblazers. Where they spend the morning doing an outside classroom. Lily loves it. She happily got dressed including waterproofs and wellies. She also had some ear defenders to take with her. To help when it gets to loud. Just the comfort of taking them seemed to help her. Her friend Josh came round with his mum to walk to school. Natalie went with them. I got a hug before she left, but Lily was more than happy to go. 

Spending the day with Jack

Natalie had to take her car for its MOT. So that left me with Jack. He waited for Lily to go before coming down for breakfast. It was more goosebumps and Pokemon episodes on the telly. Jack wanted a walk to the nearest Pokestop for his PokemonGo game. We did that, but as it was raining we didn’t hang around. It was there and back.

Jack decided he wanted bacon sandwiches for dinner. I wasn’t complaining. I made them and Jack put the Goosebumps movie on. It’s pretty good to be fair. So I wasn’t complaining about that either. We had the Snuggly’s with us to watch the movie. Including Lily’s Spotty Dog.

Natalie wasn’t back when it came time to pick Lily up from School. So I had to take Jack with me to pick her up. Luckily I can persuade him to come as there’s a PokeGym for his PokemonGo game on the way. We waited outside the school gates, as Lily was going to come out with Josh and his Mum (thank you Donna). 

Jack got a bit agitated and nervous as the crowd around the school got bigger. I’m not sure I’d have been able to get him onto the school playground. Which is where I normally pick Lily up from. But he just about managed with me talking to him. Plus there was a few dogs for him to look at. So he was distracted enough.

Lily had a great day

Lily saw me and looked happy. Then she spotted Jack and ran straight over to hug him. It’s not very often Jack comes to pick her up from school. But Lily loves it when he does. She then does her usual. Which is telling everyone that Jack is her brother, and that he’s a giant! Which everyone can see. At 12 years old, he towers above most people there.

Lily was visibly happy. She told us all about her day as we walked home. Apparently they were getting bugs to feed the munchkins, that live in the wooded bit of the school. Then went walking into a pond (could have been a large puddle) in their wellies. Sounds more fun than my days at school. In the afternoon they made pancakes. Sounds a good day at school to me.

Lily definitely agrees. I’m so pleased it went so well. After worrying about it all last week. All the problems aren’t just solved and gone away. But at least she is back at school, and we can work from there.

Taking Jack for blood samples

Today we took Jack to get blood samples taken. After Lily got picked up for chromosome micro deletion. We all got booked in for testing. They are also looking at other stuff for Jack. 

It took some explaining for him to understand what it was for. At first he didn’t want his blood going to a mad scientist at a laboratory. I explained it would just be a normal scientist, and they want to check to see if there’s any problems. And also to check for reasons for things he already has. Lily told him she has already had hers and it was ok. That really reassured Jack and was so sweet. Proud dad day!

Jack took this as they were checking why he has super strength. Which is sort of true, so I agreed. He was as anxious as expected, but coped with it all very well. Natalie printed out some visual aids. So he had the step by step process. He got nervous in the waiting room, but we didn’t have to wait long.

A proud dad day

He sat down fine. His leg was shaking away, but he looked at things on his phone to distract himself. Then when it was time for the needle. He didn’t want to take his eye off it. As with anyone, when the needle went in you could tell from his face it hurt a bit. But he realised that was the end of the bad bit, and calmed right down.

We were both really proud with how well he did , and more importantly he was proud of himself. With the struggles that happen day to day. It can be easy to forget how well Jack has been doing, especially when we’ve needed to go out into the big wide world. Outside of the comfort zone of home and school. He is doing so well. Today is definitely a proud dad day.

Jack & Lily Have A Special Visitor

Jack & Lily Have A Special Visitor

The last day of the school holidays today and it was probably the best day. Jack and Lily have a special visitor come to see them. Normally we go to my parents on a Sunday. But as the car needs work doing on it. They were coming to our house instead, and bringing Mack the dog with them.

Jack and Lily were really excited to have Mack coming. They were also cooperative with that fact we needed to tidy up. Then hoover all the floors for Mack to come in the house. Which helped me out. The house was the best it had looked all week.

Special Visitor

Jack even came downstairs to wait for them to arrive. After barely getting him out of his room the past two days. That was good. When they arrived Mack was running all over the place. He’s a very excitable dog, and Jack & Lily find him hilarious. He also likes a lot of fuss. Which Jack and Lily are both more than happy to give him. He also likes to sit and stare at our Guinea Pigs.

We all took Mack out for a walk over to the nearby football/basketball court. Jack and Lily out together is only possible with the extra help at hand. Lily wanted to play football with myself and grandma. Whilst Jack just wanted to hit a tree with sticks. It got them both some fresh air and tired them out. Which was good. Jack found a great big stick that he wanted to bring home. Apparently he will make good use of it tomorrow. I’m not sure I want to know what that means. It’s not very often Jack and Lily have a special visitor, we normally visit them. So they really enjoyed today, which was nice.

Lego Movie

Even after my parents and Mack left. Jack stayed downstairs and we all watched Lego Movie 2 together which was really nice. It’s something that is happening less often. As Jack wants to be in his room or watch something Lily finds scary. So you have to really appreciate it when it happens. Sitting through an entire film together. With everything staying calm, and everyone enjoying it. Is a massive deal.

Later on when Lily has gone to her bedroom. Jack had put Netflix on and was watching old episodes of Goosebumps. He’s really got into since watching the film. He’s become fascinated with monsters. So goosebumps is an age appropriate way for him to watch that type of thing.

It’s another thing that he finds fascinating, because I remember it from when I was a kid. He wants to watch some more with me tomorrow. I was thinking of getting him some of the books. Like this anniversary tin I was looking at on amazon. But I don’t actually know what sort of reading level he is at. I just know he can read. I will have to test him. Maybe just get a single book like this one. See what he can do and go from there.

Lily’s had some mixed emotions about school tomorrow. She seems to be torn between wanting to go and not. There’s been some tears and I am expecting tomorrow morning to be difficult. But we will see how it goes. 

Dad Does Autism

The End Is In Sight

The End Is In Sight

I’ve felt like I’ve been completely losing the plot the last few days. But hopefully the end is in sight. Jack has been pretty good. Apart from the odd moment where Lily crying has made him angry. He’s been calm and just doing his own thing. Building Lego or playing on his computer mostly.

Lily on the other hand has been really hard work. It seems like she needs my attention 24/7 at the moment. To be truthfully honest I’ve not been up to it. I’ve tried my best but I’ve been getting frustrated. I can’t seem to get a chance to do anything that needs doing. Then with Lily being so demanding. Jack gets left on his own too much.

Finally a bit of time outside

He’s ok on his own, but I know he’s like more time with me as well. I took Lily in the garden to play football this afternoon. It finally wasn’t raining, and I figured she needed a run around. It certainly helped. She enjoyed the time outside, and when she came in she was much calmer than before.

I’ve just not had the energy for this week. With it being so difficult to get Jack to join in something with Lily. I feel like I’m swimming against the tide just making sure both are entertained. Never mind trying to fit in housework or anything else.

The end is in sight

There’s only one more day until Lily should be back at school. She wants to see her friends. So fingers crossed we can at least get her into school. Whilst we try and sort out what’s going to happen in the future. Jack doesn’t go back until Tuesday. But Jack on his own is normally quite chilled out. He might want to go for a walk. Then as long as he’s got snacks and we watch what he wants on the tv. He will be hapPy

So the end is in sight and it’s nearly time to go back to normality. I need it just as much as the kids that’s for sure.

Who’s Not Coping With The School Holidays?

Who’s Not Coping With The School Holidays?

I’ve talked about how Jack has been struggling with the school holidays. The change of routine etc..And how Lily seems to be struggling with everything at the moment. But who’s not coping with the school holidays the most? Probably me.

I’ve not been having the best of weeks. I’ve been a bit all over the place. For some reason I’ve been feeling really tired. So having the kids at home all day. Has been pretty challenging. I’ve tried to keep them entertained, but the horrible weather hasn’t helped. Getting outdoors hasn’t really happened.

I’ve spent most of the week dropping things and getting everything wrong. But as much as I wanted to just go to bed. I couldn’t, you just have to get on with it. Lily has kept herself busy with Art. Everyday she has been doing something. She’s got me helping her at times. Other times it’s too secret and no one is allowed to see. 

Lily’s Art Gallery

Not wanting to be left out after I talented with Jack. About heel ping me with my website. Lily wants to help as well. So we talked about creating a sort of Art Gallery page, to showcase her work. She was a bit worried that the work, would have to be very good to show people. I told her all art is good, and people would like to see her work.

It’s just a bit of fun, and makes Lily feel like she has a reason to be creative. Which I think is good. So I will look at working on that over the next few days. I might have started something here. But it’s cool. If they want to help me and are enjoying it. Then it should be fun.

A glimmer of hope with Lily and school

Lily said she wants to go back to school to see her friends. Which was a huge announcement that came out of nowhere. I still think it’s going to be a difficult morning on Monday. But at least there’s some hope now. Whilst I am starting to think a move to a special/enhanced resources type school is the long term solution. The effects of having to leave her friends if we do that. Is a major concern. 

It would bring a lot of difficulties and involve a lot of tears. But there’s going to be a point where a decision has to be made. The next few weeks are going to be very important regarding Lily’s future.

Jack loves Pokemon

Jack was calm for the most part yesterday. I finally finished setting up his punch bag. Which he was really pleased with, and gave it a little test. Now I need to organise his room and get it in a suitable position. But with the amount of Lego that’s everywhere. In and out of boxes. That’s not going to be an easy task.

He wanted to watch Pokemon with me again. We are watching the original series, that came out when I was still at school. Something that Jack finds really fascinating. I remember watching it occasionally, but I was older by the time it came out. Jack can’t understand why I don’t know everything about these episodes. The way he does about Pokemon. Tell him a Pokemon’s name, and he can tell you what type it is. What region it’s from and what it’s moves are. He thinks everyone else should do as well.

I can’t remember all that stuff 5 minutes after Jacks told me. Which he gets annoyed with sometimes. Then there’s his newest obsession Secure Contain Protect. He knows everything there is to know about SCPs. Whilst I have no idea. One major problem we have is Jack can’t grasp that these things aren’t real. I’m going to work on a post, to explain how Jack can’t separate reality and fantasy in the coming days.


Today is Friday and it’s not raining. So I’m going to try and get the kids outside. I’d like to go for a walk. But I can’t really take them on my own. Jack is supposed to be two to one care at all times. I’m the only person who takes him out on their own. And even then I will only do it locally. Taking them together is too much for anyone. 

They can be fine together. But Lily gets upset easily and that will trigger Jack. The last couple of times I did try it. It didn’t end well. So I won’t do it now. So I will have to see what I can do. But the question of who’s not coping with the school holidays? Was definitely me. But I am feeling much better about things today.

Jacks struggling and Lily loves her Guinea Pigs

Jacks struggling and Lily loves her Guinea Pigs

Just a quick one today about how Jack’s struggling, and how Lily loves her Guinea Pigs. School holidays seriously eat away at your spare time, as I’m sure all parents know. Jacks still struggling a bit. He didn’t want to go out during his respite stay, which I can’t recall ever happening before. When he came home he wanted to go straight to his room. He hasn’y been out since.

I went and sat in his room for an hour, which he seemed happy about. We talked a bit and when I could get him away from Pokemon and YouTube. We did get a bit of two way conversation. He’s very interested in my website. Jack is obsessed with anything computer related, like most kids these days it seems. Jack and Lily both want to be YouTubers. 

So I talked to him about helping me out on my website. His smile was wide and he nodded saying yes. I’m not sure exactly how and what yet, but I’ve known since I started he wanted to help, and I can only give a parents perspective on Autism. Jack and Lily are the ones who are autistic, and who people can learn the most from.

Lily loves her Guinea Pigs

Lily really enjoyed helping me clean the Guinea Pigs our today. Mainly because I did the cleaning, whilst Lily did the playing with the Guinea Pigs.

Lily loves her guinea pigs

She did help me give them a wash and cut their nails. Doing a great job of holding them steady, which she was very proud of.

In other news, Jack’s DLA award came back. It wasn’t what we think it should be. So we are going to argue it. Which is yet more stress and work. It never ends.

Dad Does Autism

Autism and Meltdowns

Autism and Meltdowns

Autism and meltdowns, the bit I don’t like to talk about much. Things have been going very well recently, when things are going well, you can’t help but wait for things to explode. It’s always there in the back of your mind. When’s it going to happen? There are so many challenges you have to face, being the parent of an autistic child. Then when you have 2 and there problems and needs are completely different. It is so hard to juggle.

The wait for things to explode ends

Today was explosion day for Jack. It wasn’t the worst “meltdown” we’ve ever had to deal with, but it was the worst one for at least 2 months. As I’ve said previously, the change of routine that comes with school holidays is always problematic. The loss of routine causes a spike in anxiety, which leads to a short fuse.

Today Jack has gone to his overnight stay respite. Normally he would go straight from school in his school taxi. Today we have to take him, which again is another change in routine. Sometimes he is still able to go without any major problems. Not today. 

Autism & meltdowns

His anxiety was visible all morning, but it was being kept under control. Just before it was time to go, Lily ran into her art box and hurt her toe. It really hurt her and she cried a lot. Jack immediately lost it. Efforts to calm him down were not effective. Jack as is usual just wanted to fight me, he needs to get his frustration and anger out. He often picks me to take it out on, I guess as I’m the man in the house. He doesn’t want to hurt people, he never does anything to his sister. Who he is very protective of, but the frustration has to come out. The more he keeps it in, the bigger the explosion will be when it comes out.

The important thing with autism and meltdowns, is to try and stay on top of things. Try and keep the anxiety level under control, and try constantly help with Jack’s sensory issues. We try to give him deep pressure and squeezes throughout the today help him regulate.

Today my attempts to calm him weren’t working, so Natalie came to him, whilst I went to Lily. It took a while but he did eventually calm down enough to go. He was reluctant at first, but he made friends with me before he left. The normal respite routine will probably be good for him tonight.

It’s a weird situation. I like it when the kids are home on school holidays. We get more chance to do things together, but if Jack can’t cope with the change. It just makes everything difficult. So you end up feeling like you can’t wait for them to be back at school.

Jack wants time with us

Jack told Natalie that he wants Lily to have a sleepover at grandmas. So he can have a night with just Mummy and Daddy, like Lily has when he’s at respite. We have wondered before if this might happen. So you can expect a phone call grandma haha.

I did manage to finish the Lego Ninjago set (affiliate link) I started yesterday. It took longer than I expected, due to some fiddly parts, but we now have a nice snake. So that should cheer Jack up.

Jack was late getting to respite, so it was getting a bit late by the time Natalie got back. Because of her injured foot Lily didn’t want to go anywhere either, she wanted McDonalds at home and watch a movie. So that’s this evenings plan.

Dad Does Autism