The easy life of carers

The easy life of carers

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

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

Breaking point

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

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

A week of appointments

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

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

The week that was (Lily)

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

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

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

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

The week that was (Jack)

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

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

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

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

Final thoughts

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

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

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

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

Autism At The Cinema

Autism At The Cinema


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. 

Lily eyeing up the popcorn & sweets

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

How To Get That Self Care Time You Need?

How To Get That Self Care Time You Need?

I’ve mentioned I’ve been struggling the last few days. Well, the last few years really, but the last few days have seen a drop in my mental well being. I took a bit of time out yesterday, which helped a bit. The biggest problem a lot of people have is, how to get that self care time that you need?

We are all busy, and leading hectic lifestyles in our own way. Whether it’s being a carer for children with “disabilities” like me. Or doing that whilst trying to work full time, which used to be me. Just looking after children, whilst juggling a career. Even if it’s just your career you’re focused on, and it’s taking up all your time. It doesn’t really matter. We all need to look after ourselves, and so many of us don’t.

Medication

I have been taking anti depressants for a long time now, at varying dosages. They keep me functioning, especially at the darkest times. But they are not a cure. Nothing has a positive effect like self care does, yet it is so easy to neglect when you are in a negative frame of mind.

So how to get that self care time that you need? I spent a long time prioritising everyone else’s well being. To the detriment of my own health. Last year I realised I can’t look after everyone else if I’m not well myself. I’ve made some progress on that front, but there’s still a long way to go.

Prioritise self care

The single biggest thing anyone can do, is make the decision to prioritise self care. There will be slips, there have been plenty for me. We are all human after all. But you have to keep reminding yourself, why you made it a priority in the first place. For me it was to be in the best possible place, to be able to look after and fight for the help my kids needed. Everyone has there own reasons, you just need to find it.

What you do in your self care time, is entirely up to the individual. There are the popular recommendations like go for a walk, listen to music, have a bubble bath etc…Whatever makes you feel happy and relaxed. Find the time for it.

Couple time on Tuesday

Tuesday was a rare occasion where myself and Natalie actually got to spend time together, and sort of go out. After taking lily to school, we had a spare hour before we had to go to an appointment. I lay on the bed and put my favourite meditation/stress relief video on YouTube. Click here to see it. I can’t relax in the quiet, my brain just refuses to switch off. Natalie was putting these types of video on, the we tried it for Jack.

He found the one I now use the majority of the time. He uses them occasionally, he has to be in the mood and want to. For me, I like to both close my eyes and listens, and also watch the video. It’s certainly helped me find that time to relax, and be able to just switch off. Which is so desperately needed.

The appointment was with Jacks doctor and CAMHS. It was basically just a check up appointment, and it went fairly well. Afterwards we went to the local shopping centre, to get Lily a costume for World Book Day. She wanted to go as a pirate, so that’s what we got.

Making the most of opportunities

We had enough time to get dinner out, which was nice. It’s something we try and do fairly regularly. Opportunities for nights out are few and far between. So dinner dates while the kids are at school is our social life, but it’s better than nothing. I also got some Krispy Kreme doughnuts to bring home, which made Jack & Lily happy.

Anyone who knows me knows I love a doughnut, so I was happy too. There’s lots of things for Natalie and I to be doing at the moment. There always is, but today we made the most of the time we had during school hours. The result is I feel much better for it.

I Really Struggled To Get Through Sunday

I Really Struggled To Get Through Sunday


The usual routine on Sundays is to go to my parents. Yesterday both Jack and Lily said they were to tired to go. There are some reasons that I will go into for that. Personally though, I really struggled to get through Sunday.

My own mental health has been on the rocks for some time. Some days are better than others. Yesterday, for no reason that I can explain was a bad one. I just never had any energy, and I felt stressed. I was really down, and I couldn’t pick myself up.

Change of routine

I think Jack going out on Saturday was a mistake. The week at school tires him out, and he usually spends most of Saturday in his bedroom. Not being able to do that, and the change of routine definitely effected him this weekend.

Saturday evening was difficult, and it continues into Sunday. He said he was too tired to go to grandmas to see Mack. Given how much he loves to go and see that dog, it was obvious things weren’t right. Lily said she was too tired as well. So we didn’t go. The first half of the day, the kids got on really well. They kept each other amused playing Roblox, and watching TV together.

Personally I was really struggling for any motivation. I was feeling low and couldn’t pick myself up. I wasn’t in a position to go out for a walk to clear my head, with both kids at home. Another thing I like to do is listen to music through headphones. So I can just zone out a bit, but I couldn’t find them. Turns out they were spinning around the washing machine.

Changes come to boiling point

In the afternoon Lily fell of a chair and hurt her back. Nothing serious, but it made her cry. That set Jack off. I had sensed he was ready to explode all weekend, and here it was. I just didn’t have the energy for it. He stomped about and slammed some doors, and in the end his mum calmed him down and got him to talk to her. While I took Lily upstairs to watch TV.

I really wasn’t much use at all. To deal with Jack in that situation takes so much physical & mental energy. You have to be so careful what you say, and at best he will want to push, pull and squeeze you. I don’t know why I didn’t have it in me yesterday, but I just didn’t. Luckily Natalie was there to step in.

Afterwards Jack was much happier. Like he had released all that frustration that was trapped inside him. I sat with him watching Pokemon, while we finished his T Rex document. Thank you to everyone who has responded to his question. It will make him really happy.

Self care

I got the kids off to school this morning, and went back to bed. I was still feeling the same, but I’m happy to say after a couple of hours to relax. Things are looking up and I’ve have perked up a bit.

Self care is so important, and yet so easy to neglect. This is true for everyone, but seems especially true for carers. I see so many people struggling the same way I do. When you have to put so much time and effort into your children. Just to get them through the day. It often feels like there’s nothing left for yourself.

Getting free time to do the things that make you happy are difficult. The only time you get is when the kids are at school. Until recently because I’ve been off work sick, I spent nearly all that time at work. You have appointments and meetings all over the place. I think we have 3 in the next couple of weeks for Jack & Lily. Never mind appointments for myself and Natalie.

We have been fortunate over the years, that my parents would babysit for us. But I don’t like to ask to often. Especially with how difficult Jack can be, and how big he now is. But I know people are doing it all on their own with absolutely no support. How those people do it I really don’t know. I have so much respect for them.

I keep saying I will look after myself better, and I mean it when I say it. But it’s not easy. I will keep on trying, there’s no other option.

Special Interests

Special Interests


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

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

Special interests

.

Jacks’s special interests

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

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

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

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

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

Dad Does Autism

Autistic People Going To Concerts

Autistic People Going To Concerts


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

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

Jack wants to go to a concert

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

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

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

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

Something we can all do

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

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

Jack & Lily Have A Special Visitor

Jack & Lily Have A Special Visitor

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

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

Special Visitor

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

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

Lego Movie

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

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

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

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

Dad Does Autism

Who’s Not Coping With The School Holidays?

Who’s Not Coping With The School Holidays?

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

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

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

Lily’s Art Gallery

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

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

A glimmer of hope with Lily and school

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

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

Jack loves Pokemon

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

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

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

Today

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

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

Jacks struggling and Lily loves her Guinea Pigs

Jacks struggling and Lily loves her Guinea Pigs


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

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

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

Lily loves her Guinea Pigs

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

Lily loves her guinea pigs

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

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

Dad Does Autism

Autism and Meltdowns

Autism and Meltdowns


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

The wait for things to explode ends

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

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

Autism & meltdowns

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

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

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

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

Jack wants time with us

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

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

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

Dad Does Autism