This latest post was fun to do, it is about nature art for kids. Basically we went out for a walk around our local nature reserve, which is great in its own right. This time though we took a box with us, to collect things off of the ground to use for an art project. I’m very much a believer in leaving nature alone, so only things on the ground were to be taken.
The kids were happy with this, as they both like to look after nature anyway. The ground was literally covered in sticks, so there wasn’t going to be a shortage of material. We had a nice walk around, and myself and Lily collected lots of material for the art project. Jack just wanted to walk around.
Time for the nature art for kids
The walk was fun, but once we got home it was time to think about the art project. We had a really good haul of stuff, so it was time for Lily to decide what she wanted to do.
This is what Lily decided to do. She cut out some printed letters, to spell Mummy, Daddy, Jack and Lily, and stuck them on some paper. She then drew some pictures. For the record, the drawings are of the Pokemon Bulbasaur (for Jack), A motorbike, a candle (form mum) and a bouncy car like you get on a play area.
Lily wanted to make a frame for the picture, and decorate it using the sticks that we found. So what we did was cut 2 pieces of cardboard to A4 size, and stuck the drawing onto one piece. Then cut the middle out of other piece of card, leaving a frame roughly 2cm thick. Lily stuck that onto the drawing, which left the sticks. Lily had a great time glueing then around the frame, with some PVA glue.
It left the finished article looking like this….
Lily was really happy with how it turned out, and I think it looks great. There’s still plenty of stuff left in the box too, so if anyone has any ideas of things we can do with it. We are very open to ideas, please leave a comment below. To see more of Lily’s arts and crafts, visit the Lily’s Art Gallery section.
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.
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.
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.
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.
It’s been an interesting day. If I was going to advise you of things not to do in a pandemic. Snapping your tooth clean off at the root, would be right at the top of the list. That’s exactly what Lily did today, whilst simply eating a cookie. Normally it wouldn’t be a massive issue. You’d ring up for an emergency dental appointment, and get it looked at.
Of course, these are not ordinary times. Dentists aren’t seeing patients, and it has taken all day. Just to try and sort out getting a prescription for some antibiotics. The dentist have told us they will ring us, as soon as they are seeing patients again. Until then we just have to hope Lily is alright.
Jack struggles to cope
Lily spent most of the morning crying, Jack stayed out of the way and seemed okay. I took him out for our usual walk, and things didn’t go to plan. Jack gets very anxious about flies, bees, wasps etc.. There was a lot about today, and in Lily being upset all morning. Plus the unusual and distressing situation we are all in anyway. It all got to much for him.
He had a full blown meltdown at the side of a busy road, and then got angrier because it was so busy. I don’t know how long it took to calm him down, but it felt like an age. We had a couple of people ask if I needed help, which is a nice thought. In reality it just makes things worse, as it sets Jack off. Eventually he calmed and we walked back calmly.
At home he said he was scared by the traffic. The traffic seemed much busier, than it has been in some time. Perhaps Jack had got used to the roads being so quiet, and couldn’t cope with the change back. Plus the the other stuff happening, it was just too much for him.
A nice evening
This evening I sat with Jack and we matched the movie, Shazam. Which we both loved, so the day finished well. I’m just going to have to think about what we are going to do for a walk, as I don’t fancy risking the same thing happening tomorrow. That won’t be good for either of us.
Things are calm as the day comes to a close, Lily seems okay and so does Jack. Breaking your tooth is definitely up there on the things not to do in a pandemic though.
There is a local charity near us, that I have talked about before. Click here to view a previous blog post about them. They are called Special Friends, and they are based in Belper, Derbyshire. Lily has done a number of different activities with them that she has really enjoyed. If you live in the Derbyshire area I highly recommend them. You can find more information at their website https://www.special-friends.co.uk/
Once again we go on the the current situation with Covid 19, as it dominates everything everyone is doing. Events that Lily would enjoy going to, which involve lots of other children, can’t be going ahead right now. Hopefully they can get back to business as usual when this is all over, and Lily gets one of her outlets back. Where she can just go and be a kid and mix with others, and not have the worry of Jack’s needs. Which sometimes do get in the way of what Lily wants to do, as much as we try not to let it.
A special friends surprise
Today a surprise came through the letter box for Lily. A plastic folder than had in side a certificate, a framed photograph and a couple of other things.
It had been dropped off by the people at Special Friends. For them to be making the effort to do this at this time, speaks volumes for the people running it. I don’t know how many children they did it for, but I’m sure every one of them were just as pleased to see the folder as Lily was.
In these difficult times, it’s the gestures like this that keep you going. It really brightened up the day for Lily. She has started looking a bit down recently, but this and a couple of other things have certainly made her a lot happier. So a massive thank you to the people at Special Friends.
It was back to the Sunday routine of going to my parents house this week. After not going last week. While I was there I found myself googling, “are dogs good for autistic children?” The reason being there has been talk of us possibly getting a dog.
It’s not something that is in the pipeline to happen immediately, and I just wanted to have a bit of a look at what information I could find. I found myself reading up on service dogs and therapy dogs. I’d heard them mentioned before, but this was the first time I’d read up on them.
It was fascinating, but we’d be looking at just getting a “normal” dog. I make no secret of the fact that I’d love to have a dog. I was brought up around dogs, and absolutely love my parents dog Mack. When I still lived with my parents, I used to go out with our dog Dylan for hours. I do miss that a lot.
We love animals
I come from a family that loves animals, and that’s certainly been passed on to Jack & Lily. They both love spending time with Mack, and my brothers dog Henry. But Jack especially, there are visible benefits from him being around a dog.
Although he gets excited around dogs, as far as anxiety goes, it calms him a lot. So would having his own dog keep him calmer at home? Having Dylan when I lived with my parents certainly helped with my mental health. Though it’s different with Jack, I do think it would help him too.
It would give him some companionship, something to love and look after. That unconditional companionship and friendship, is something I think Jack really needs.
Whilst also giving us all a reason to get out for some nice walks. Similar to how Jack never takes it out on his sister, when in a meltdown. He also never takes it out on animals that may be around.
It would be so helpful in so many ways. Unfortunately as we live in a rented property, it’s not as simple as just going and getting a dog. We have to get permission first, and it could involve an increase in rent. The rent is high enough as it is. So we will have to think about it.
We’d love to hear about your pets
There are lots of positive stories about dogs and autistic people, so that feeling of it being such a positive thing for Jack. Really makes me want to do it. I’d love to hear of any positive steories about autism and pets, or even negative ones where it didn’t work out. Perspective is always important. If your not living around autism, we’d still love hear about your pets, Jack and Lily always like to hear about people’s pets. So leave a comment below if you’d like to share what pets you have. Thanks.
Lily had a great week at school. With all the problems we had before the half term holidays, she has done incredibly well. Friday night was treat Lily night. Jack was at overnight rest-bite, so it was a chance to focus on Lily, and test out autism at the cinema. It would be the first time Lily had been to the cinema in some time, and since her difficulties with autism had really started to show.
First off acouple of things have changed. She now takes in ear defenders, we picked up these ones for less than £5 on amazon. (Affiliate link) They are worth every penny. Jack has used them for years, and won’t go anywhere without having them with him.
We always thought Lily didn’t need them. We were wrong. She might not need them to the extent Jack does, as she appears more tolerable to noise. But it’s become clear she does need them to cope in busy situations, and just because she doesn’t “kick off” like Jack does. It doesn’t mean she’s not struggling.
She also went for an eye test, and now has glasses. We are hoping this will solve the issues she is having with headaches. She has been enjoying school again, which is great. The situation still needs keeping an eye on. I really don’t think going to a big secondary school is going to be good for Lily. But how we plan ahead for that I’m not sure. But for now at least she is happy again.
Lily wanted to go and see the new Sonic movie at the cinema. Jack had already seen it, so we chose to do it when he wasn’t going to be there. First she wanted McDonald’s.
Autism at the Cinema
After that it was off to the Odeon Cinema. Since I last went it had been kitted out with new comfy reclining seats. I was extremely comfortable for the movie, laid back with my drink and popcorn.
Lily loved the reclining seat, we were set up on the back row in the corner. Though Lily is usually ok out in public, and she doesn’t “stim” to a very noticeable level, unless you are looking for it. We thought it the best place to sit, with her anxieties and behaviours having increased since the last cinema trip.
It was Friday evening and the cinema was pretty full, but Lily was absolutely fine. Due to the big comfy seating arrangement, you get a lot of space. So you don’t feel cramped or surrounded, which definitely helps. She really I enjoyed it, we all did to be fair. I was a young kid when Sonic first came onto the scene in the early 90s. So there was a bit of nostalgia there for me.
There were a few times during the movie, that Lily looked over to me and just looked so happy. I can’t wait until we can go to the cinema again, maybe with Jack as well. Though he seems to always go to the cinema at rest-bite, and watch what I want to watch with him. I still haven’t watched Avengers End Game. Not that I’m bitter about it or anything….
Anyway it was a lovely evening for the 3 of us. There are autism friendly screenings at the Odeon cinema, and that’s great. But Lily doesn’t need them, not at the moment anyway. I also think Jack would be fine at that cinema. He is likely to get a bit more excitable than Lily, but when he’s watching something he likes, he tends to put full concentration into it. I think he’s be fine. We will look at testing out this theory soon
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.
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.
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.
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.