Delayed processing as part of autism

Delayed processing as part of autism

So we are into the second week of the kids being at home. Since my last post things haven’t been going quite so well. Jack has delayed processing, understanding delayed processing as part of autism, and how it effects Jack, was something that took us a long time to get our heads around.

To put it in broad terms, an autistic person may experience a delayed response to sensory stimuli. What this means using Jack as an example. When I ask Jack a question, there is usually no response. It’s as if he hasn’t heard the question. I normally ask again, as Jack usually has a TV or some music on. Just in case he didn’t hear. But it is highly likely he did hear the first time.

Echolalia and learned responses

He just needs a lot more time to process what has been said, than you would typically expect from a child. Jack can give immediate responses, but these are what are called learned responses. Which is where his echolalia comes in. Jack can learn a conversation, and repeat it the next time the same situation comes up. But this is like someone on auto pilot. You are not getting his true thoughts and feelings. We have had many “disagreements” with “professionals” who have worked with Jack regarding this.

Getting Jack to express those true thoughts and feelings, hasn’t been an easy process. We are getting there slowly, and Jack is much better for it. Learning ourselves when to use social stories and PECS took time. They are so important and have been vital to Jack’s progress, and his ability to communicate.

Visual Aids - a picture exchange communication system folder
One of Jack’s PECS folders

As a parent it’s not easy to always remember this. Sometimes you can forget that a simple question like, what do you want for dinner? Is not so simple for an autistic child. Jack has to be given options to choose from, otherwise you just get a blank look and maybe a “don’t know”. Start with options of food he knows, even showing him the options, and he can give you an answer fairly quickly. Even in a situation of high anxiety or meltdown, though it’s likely he will respond with nods of the head rather than words.

Delayed response to situations

This delayed processing as part of autism, also comes into play, with situations that happen. Which is why it comes as no surprise to me, that Jack was fine with the sudden change last week. But this week he is finding it very difficult. His anxiety has gone through the roof, and he’s become tense and argumentative. It’s like it has taken him a week to process what is happening, and everything that has changed.

We are now prepared for this, and a week isn’t actually a long time. In the past Jack has had spikes of behaviours that stemmed from an incident that has happened months before. Which left us and everyone else baffled, until we finally worked it out with Jack. Knowing about the delayed processing, and just how long the delay can be has certainly been a great help. Now when Jack is unhappy, we know to trace back for months to find the solution if necessary.

What’s happening now?

Jack finding things difficult this week, in one sense can be a good thing. It’s only taken a week for him to start to process what’s going on. So we can now work on bringing his anxiety down, and getting him in a happy place. 

The one issue with that of course is these are unprecedented times. We don’t have the answers to the questions he wants answering. When can he go back to school? I don’t know. Will respite be back soon? I have no idea. When can we go and see his grandparents and their dog Mack? I don’t have clue. Just like I have no answers for him when he asks about going bowling, or to the cinema.

He is getting frustrated that I don’t have any answers for him, and he’s becoming very argumentative at times. To be honest I’m getting frustrated myself, the last two days have been hard work. There’s no break from it either, no chance to recharge. The outlook isn’t looking good for that break coming any time soon either.

Jack was fairly calm and relaxed Tuesday evening, so hopefully that’s a good sign. When his anxiety has been down he’s been really good. He’s been playing with Lily more than usual, and spending more time out of his room than usual. I guess being at home all the time, staying in your room all day gets a bit dull. One positive of this coronavirus stuff, is we are doing activities together more than we would usually, which is nice. 

Free sensory guide

Lastly I would like to point you in the direction of where you can currently get a free 12 page guide to “Meeting Sensory Needs” by clicking here.

It is aimed at teachers in the school environment, but having read it there is certainly value in it for parents as well. As we know only to well with Jack, and are beginning to learn with Lily. Meeting a child’s sensory needs is so important. Get that right, and everything else will start to fall into place.

There’s some great information and ideas in the guide, which is the first chapter of an upcoming book. Though it’s based in the classroom, you shouldn’t assume your child’s school is always aware and doing these things. So arm yourself with information to take to them, that’s what we have always done and will continue to do for Jack and Lily.

Coronavirus Social Story

Coronavirus Social Story

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

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

Something amazing

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

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

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

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

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

Is Lego Good for Autistic Children?

Is Lego Good for Autistic Children?

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

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

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

The positive points

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

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

Calming effect

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

Acting independently

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

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

Keeping him off technology

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

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

Pride in his creations

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

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

Answering the question

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

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

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

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

Lily Shines AT Sports Festival

Lily Shines AT Sports Festival

Today Lily was at a sports festival. We was up late trying to get Jacks Living Allowance form completed. I kept falling asleep much to Natalie’s annoyance. We needed to get it sent off today. So most of today has been spent on it as well. 72 questions that require great detail. I will be glad to see the back of it. 

Then we’ve got to fill one out for Lily. The fun never stops. I think we’ll take a bit of a break, before doing Lily’s.

Sports Festival

Going back to yesterday’s post. We found out what she would be doing at the Sports Festival. She had been elected as part of a team of five. To play in a Boccia competition. If like me, you have no idea what Boccia is. Wikipedia is always our friend. Turns out, it’s a sort of sit down bowls.

Lily was excited. But also told us she was nervous, because it will be busy. Once the games started. She was fine. 20 schools took part in the competition. They had to play each team once. Lily’s school came in 2nd place. With 18 wins and 1 loss. They got a wristband for finishing second. That she is really proud off. The school are doing them certificates tomorrow. To say Lily is excited about getting her certificate would be an understatement.

Sports festival wristband
Lily wristband, which may never be taken off…

It’s so good to see Lily able to engage in something like this. Jack always really struggled with anything like this. To the point, when we went to his school fair. We took him to the hall where the fair was. The whole school were amazed we could get him to walk around the hall. But both of these achievements made me just as proud, because to each one it was a huge deal.

Back at home

Lily has very hyper when she got home. So I let them both go out in the garden to run off some steam. It was all good. Until it was time to go inside, and Lily started crying. Jack immediately got angry. I managed to get Lily to go in the house. So that I could deal with Jack. He was angry, but not to the full extent he can be. Talking to him, and some gentle physical encouragement. I managed to get him in the house fairly quickly.

Once inside I asked him if he wanted a drink. He replied, “No! I don’t want see you.” Then after a short pause. “Er yes I’m thirsty. But then I don’t want to see you.” And he went off to his room. I had to smile. By the time I took his drink up he had fully calmed down. Which was a relief.

There have been times. That the exact same incident could have turned into a battle that takes 3-4 hours to calm down. I like to think that there’s been progress. In not just how Jack copes with these situations. But also how I cope with them. There’s not a manual for trying to calm down an angry autistic child. One who’s the size of an adult and just wants to smash everything, including you. Today it went well. Fingers crossed it stays like this.

Dad Does Autism

Chilled Out Saturday

Chilled Out Saturday

After yesterday we had chilled out Saturday at home today. Lily wanted a pyjama day. She wanted to play a game of Battleship and play with hers cars. Then spent a lot of time doing art. Lily loves art and it’s great seeing her express herself. Jack mostly stayed in his room. Playing on his computer.

In the afternoon I took Jack for a walk. It was a good 45 minutes. Obviously involving Pokemon. It was another good walk. This time no phones were broken.

In the evening Lily slipped over in the kitchen and hurt herself. It caused her to cry loudly. One of the biggest challenges we have with Jack. Is that he can’t handle sudden loud and distressing noises. Children crying being the number one cause for meltdowns.

Natalie was out at work. So I had Lily downstairs crying. Needing comfort and help feeling better. Jack upstairs Growling and stomping. Needing help to regulate himself and calm down. It is an extremely frustrating position to be in. But can be fairly common and something you just have to learn to deal with. I wouldn’t necessarily say it gets a lot easier over the years. But you do learn from experience ways to handle the situation.

Thankfully after putting Lily on the settee with her favourite blanket and giving her a cuddle she was ok. So I went to Jack, who was visibly distressed. It will be the build up of the incidents of the past 2 days. With Lily’s crying being the spark that lit the fuse. He got aggressive. But I told him he had Chicken Burgers ready to eat. Which was a bit of luck. He wasn’t happy. But he wanted his Chicken Burgers. I left them with and gave him time to calm down. It took a while, but eventually he calmed right down.

A slight episode at the end of the day. But overall a fairly chilled out Saturday here at Dad Does Autism.