The Story of our family, and how Autism effects our daily life.
Tips & strategies
This is the part of the Dad Does Autism website, that contains blog posts that contain Tips and Strategies, that we have used to help Jack and Lily.
We are not experts, we are just parents. We only know about Jack & Lily, but if things we have done can help other people. I feel it is only right to share them. I actively seek as much advice and information from autistic people, parents of autistic people and professionals in the field.
The ideas and information I get, I look at and try and work out what’s right for my own children. So when I give Tips & Strategies, they are ideas for people to use if they wish. I can’t guarantee what will work for other people, it may well be the things that didn’t work for us, that work for you.
My aim is to try and be helpful to others, the way others have helped us on our journey.
If this isn’t your first time to this blog, there’s a good chance you will know, that my daughter loves art. Today I want to talk about, why you should frame your child’s art. I believe if your child has done a nice piece of art, and they are really proud of it. It should be put on display, in pride of place. You can put drawings or painting on the fridge using fridge magnets.
Something we did with Lily a while back was put one of her paintings in a frame. Then put it on display in the living room. She was so happy and proud to see her painting on display like that. It is a really simple thing to do, and you can get a simple plain a4 frame for relatively little money.
The benefits for the child
You get a nice centre piece, perhaps for the fire place or a windowsill. But what I really want to talk about is the benefits for the child. This relatively simple gesture, not only shows them you are proud and happy with their work. It shows them support, and for someone like Lily who really enjoys art. It encourages her to do more, and to do it with confidence.
As an autistic girl who has really struggled in her first year at junior school, Lily’s confidence and self esteem has taken a massive hit. She is working 2 years behind her expected level for her age, and gets really frustrated, and at times calls herself stupid. Finding ways to boost her confidence and self esteem, have been really important.
Lily did a lovely painting of a flowers in small pot/vase, and we decided it was time for another frame. We have a small back window in the living room, which is where we put the painting.
You always want to let your children know that you are proud of them, and do what you can too boost their confidence. That is why you should frame your child’s art, it is the gift that keeps on giving. Their painting will be on show as a constant visual reminder of your pride and support, and keep giving them little boosts of confidence. Then when visitors come around, it’s their for them to see, and bound to draw some compliments. Giving them another boost.
Give it a try
If you have children I strongly recommend doing this, especially if they enjoy art. Even if they aren’t particularly arty, even something like colouring in a printed picture. Is perfectly good enough, after all this isn’t about how great the picture is. It’s about making the child feel good about themself.
If you enjoyed seeing Lily’s painting, you can see lots more of her arts and crafts by clicking this link. That takes you to Lily’s Art Gallery. As always, thank you for reading.
We had a busy weekend, the birthdays come thick and fast this time of year in our family. So I thought this was a good time to talk about autism and coping with special occasions. I’ll talk about the weekend we’ve had, and then talk about strategies at the end. They are very much the double edged sword in our house. Both Jack and Lily enjoy celebrating birthdays, Christmas etc.. but the change in routine, the excitement, family gatherings can often become too much for both of them.
But, they both expectations of what happens on birthdays and Christmas, so when we tried to not to as much to help with their sensory input and routine. That upset them. So it’s a very fine line we tread, between keeping them happy and celebrating special occasions, but not over stimulating them.
This weekend was a busy one, there was a barbecue at my brothers house. For my brother and dads birthday’s, with a few family members there. Jack was happy as he had 2 dogs to play with, and Lily had her cousin to play with. It probably helped that due to what’s happening in the world right now, there was only a small number there. But Jack coped really well, his anxiety which would normally be through the roof, was manageable.
The dogs certainly helped, especially as they chased each other and were continuously play fighting, which Jack found hilarious. He was chatty, fairly calm and even watched us playing cricket. He didn’t want to play, but would happily fetch the ball. So he sort of was.
As for Lily, she loves playing with her cousin and she spent the entire time by his side. Playing football, cricket, with the dogs and generally getting up to mischief. Which was lovely to see. He is a couple of years younger than Lily, which puts them at a very similar level developmentally.
Lily is both girly and tomboyish, she’s happy playing either the typically boy or girl games. She seems to get on better with boys than girls though, as most of the close friends she has created have been boys. At school and even at nursery before that.
Saturday was nice, and then it rolled into Sunday which was Mum’s birthday. When it comes to autism and coping with special occasions, 2 days in a row is a very big ask. We also had the issue of the birthday routine. When it’s one of our birthdays, we always go out for a meal. Eating out isn’t always easy with Jack, as he finds overwhelming, the sensory input and his anxiety can trigger meltdowns.
We have learned ways of trying to manage it for him, and last year he was coping really well and really enjoying going out for meals. Of course this year we haven’t been anywhere, and it’s certainly a worry that we might be back to square one. When we eventually do go out for a meal again.
Mum’s birthday was more of a struggle
After Saturday, and Jack had stayed at his overnight respite on Friday, Jack was pretty tired on Sunday. Just like the rest of us, tiredness makes Jack less tolerant. We had prepared him, and Lily that we would t be going out, and that we would order in pizza instead. Which they both seemed happy with. We also planned to go for a walk around, a local nature reserve.
We were later than planned going to the nature reserve. Natalie has fibromyalgia, and Saturday has also taken its toll on her. She needed time to rest and for medication to work before we could go. With all of this by the time we got there, Jack was very anxious and on edge. The nature reserve has several ponds, the first one where the car park is tends to be very busy. Especially on a Sunday.
Once you get past that it thins out and you don’t see too many people. Jack was very argumentative as we walked around the first pond, a sure sign he’s struggling with his anxiety. Once we got past that bit, he calmed down other than getting annoyed with flies.
The fairy garden
Lily was really excited to see the reserves fairy garden. Which is a “designated area”, that’s been turned into a fairy garden, where you can add your own creations to it. It’s pretty cool, and not something you’d expect to see in a place like this. It’s not an official thing, just something someone started around a tree.
I know there have been some issues with vandals in the past, but it’s always been in good shape when we’ve been there. It also means it looks different every time we go. Which is pretty amazing. Now as well as adding something to this garden, we have plans to make our own at home. Which Lily is very excited about.
It turns out the nature reserve is bigger than I realised, despite having been there a number of times. As we found some different paths and several ponds I’d never seen before, where it was even quieter. This was great for Jack, who was much happier. We did end up getting a bit lost, and Jack found the way back for us. Using the map on the PokemonGo app, to find the way back to the pokestop at the car park. Something Jack was extremely proud of!
Pizza to finish the day
We finished the day off by visiting Natalie’s parents, and ordering some pizza in. After a busy weekend, the kids were ready to scoff down some pizza. All 3 of Natalie, Jack and Lily find it difficult to go to Natalie’s parents house. Natalie’s sister who had severe disabilities passed away last year. She lived at home with 24 hour care from carers, meaning the house was always busy (often chaotic) and noisy. Jack never liked going because of those reasons, and often wouldn’t go for visits and stay at home with me.
Now it is a big house that feels empty, and Jack finds that just as difficult. Just as we all do, the quietness serves as a constant reminder of a loved one who is no longer there. His gran also had an accident, knocking a cupboard with her wheelchair, which saw a teapot fall and hit her on her shoulder. Jack was very quiet during the visit, and at times argumentative. When we got home and Jack went to bed, he burst into tears.
This was actually a great thing. You may have heard the MYTH, that autistic people don’t feel empathy or love. The truth is of course they do, but like Jack they can find showing different emotions difficult. Or they show in a different way than what is considered “normal”. Jack letting his emotions out like that is a positive thing.
The strategies for autism and coping with special occasions
When it comes to autism and coping with special occasions, you have to think ahead. You have to strategies, you have to plan everything out and you have to try and establish routines. All of our birthdays in the house follow the same routine, depending on whether it’s a school day or not. Breakfast, presents (or school), chill out time, meal at a family place. Birthdays are not the time to try somewhere new. There is already enough going on in the autistic child’s mind, that it would likely be a recipe for disaster.
Start reminding the child weeks in advance that the occasion is coming up, if it’s someone else’s birthday. Make sure they see all the presents they will be giving before hand. Plan early and tell them what you will be doing on the day. The more prepared they are the better. Now every autistic person is different, some may be able to tolerate any change, some might not be able to cope with any at all. You are best placed to judge that.
We have had lots of very eventful and stressful birthdays with Jack. It would have been easier to just do very little for birthdays, but Jack wanted to celebrate them, he wants to go out and do things. So we put in the hard work to figure out how to make it work, and it was doing. Like i said before though, I just hope the current pandemic doesn’t put us back to square one.
The last and most important point I’d like to make is, don’t put pressure on them, and yourself to make everything “perfect”. It probably isn’t going to be. There will likely be anxiety spikes or meltdowns. You might have to walkaway from something that was planned, because they just can’t cope with it. That is okay, make adjustments and just find a way for everyone to enjoy themselves and be happy. At the end of the day that’s what is important. So, that’s my post about autism and coping with special occasions, I hope there’s some useful bits in there for people. Also that it gives a little insight into what birthdays are like for families like ours. This was a good weekend and Jack and Lily cooed really well on the whole.
Then of course there’s Christmas, but that needs a post all of its own, as that can be really….interesting. As always thank you for reading.
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.
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.
tinned beans & sausages
chicken nuggets (refusing recently)
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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
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.
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.
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.
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.
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.
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.
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.