The Importance of Self Care

The Importance of Self Care

I’ve felt pretty down today, so I wanted to talk about the importance of self care. I guess it’s a bit of mental fatigue. Whilst it’s not been the most challenging week we’ve ever had. The pressure of filling out the DLA form right, has probably made it more mentally tough than I realised.

Self care is important. “How can you look after your kids to the best of your ability. If you are not looking after yourself?” That was said to me last year. It really struck a chord. Which I now know was the intention. As I wasn’t listening to anything else. My depression. That I had been managing quite well for a couple of years. Had seriously got out of control.

I felt like I was letting everyone down. But most of all my kids. Who relied on me so much. I was signed off work. The family unit was falling apart. I couldn’t cope with everything that was happening. I was needed at home. That was my priority, and thankfully my doctor and my work both agreed.

We have made a lot of progress since then. Jack and Lily are both doing much better. But depression doesn’t just go away. It’s a work in progress. When you put so much time and effort into your kids. It is easy to forget about yourself. Before Christmas it felt like a week never went by. Without a meeting or appointment for one of Jack or Lily.

I’m using this as a way to get the thoughts in my head out. But I know I also need to find time for myself. To do the things that make me happy. If you are a couple it’s even harder to find time together.  But you carry on and do the best you can. When you do get the opportunities. Try and make the most of them.

At this point of writing. Lily hurt her arm whilst playing. Her crying set Jack off, and today it was worse. I had a feeling this was coming. Which could explain my general mood today. Natalie managed to calm him down. Now I feel like just going to bed, but my football team are playing tonight. So I will watch the game. It’s 50/50 whether that will cheer me up though.

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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.

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The misery of Disability Living Allowance forms

The misery of Disability Living Allowance forms

(Since I originally wrote this post, I feel like I’ve learnt a lot about blogging. We have been dealing once again with the misery of Disability Living Allowance forms. This time for Lily. Rather than write another post about, I thought it would be better to edit the original. It certainly could do with editing, it’s not a great read, reading it back now. Hopefully it will be, once it has been edited.)

I had a bad nights sleep last night, I was diagnosed with long term depression a few years ago. There are times I can manage it well. At other times it’s a real struggle. The difficult times we endured last year, left me in a bad place. I’ve been feeling a bit better about myself recently. But lack of sleep left me struggling for motivation today.

Disability Living Allowance

One possible reason for this is we have been filling out a form to renew Jack’s Disability Living Allowance. The misery of Disability Living Allowance forms, is something I wouldn’t wish on anyone. You basically have to go into great detail, about everything your child can’t do. Or finds difficult. I find it a miserable experience, and I only help out whilst Natalie does most of the work.

But to get the rate you should be getting. You really have to go into every little detail. I think it’s been 5 years since we last had to do it. This was the hardest yet. With Jack coming up to 12. The hopes we had of him progressing, and perhaps being able to have some independence are starting to fade. In some areas he is doing really well, but he is not showing signs of being able to cope with outside world on his own.

Only yesterday Jack was talking about how he wants his own house one day. To get a job, and how he wants to get married and have kids. We are always positive with him. We tell him that anything is possible, but there needs to be some drastic improvements for any of that to happen. Knowing he wants all that, and it might not be possible. It is really hard to take. But we will keep giving him every opportunity to be the best he can be.

Positive News

Some more positive and exciting news, Lily has been chosen to represent her school. At the local Sports Festival tomorrow. (January 30th 2020) She is really excited about it. It is likely to be very busy, so I just hope she can cope with that, because if she can get into the sports. She will really enjoy it. It’s really good of the school to give her this opportunity. I will report back tomorrow with how she got on.

Lily’s DLA form

Fast forward to April, and we are doing it all again for Lily. It’s been a slightly different experience. We are having to stay at home due to the coronavirus, so there’s been plenty of time to do it. Whereas we had done it before for Jack, and sort of knew what to do, and we have every possible professional you can involved. It is still early in the journey for Lily, and this is the first time applying for DLA.

Lily’s strengths and issues are different to Jack’s, so it’s almost been like a different experience. It has still been difficult though, and it’s really hit home where Lily is struggling. The form is nearly ready to be sent, hopefully it’s some time until we have to do another one.

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a nice quiet day

a nice quiet day

After the last few days, today we needed a nice quiet day. Natalie has to take her car to the garage. So with the kids at school. I had a good few hours to myself. I spent some time working on the website. And then did some much needed housework.

The house is packed full of god knows what. So I am trying to go through it and de clutter, and organise it better. It’s proving a slow process. Especially as Lily won’t let you get rid of anything. She even wants to keep empty sweet wrappers. Usually if you remove smaller things without her noticing. She doesn’t realise. But with her toys. It is more difficult, and starting to become a major concern. If anyone has any experience dealing with this. Then some advice would be most welcome.

The kids both came home from school happy, and wanted to play in the garden. So it was more of the Cricket/baseball game for me and Lily. Whilst Jack was pretending to be some sort of ninja. It was cold so we didn’t stay out too long.

I do try and get Jack to join in the sports games at times. But if you ask every time. He starts to get annoyed. I just like to remind him he can join in with us if he wants too.

Jack spent the rest of the evening in his room. Whilst Lily watched TV downstairs. All was calm and today was a nice quiet day. These can be rare, so you always have to enjoy them.

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Frustration with Derbyshire Autism Services

Frustration with Derbyshire Autism Services

The latest look into how Autism effects daily life. On Mondays we have a few hours “restbite”. A couple of workers come from Derbyshire Autism Services and take Jack out. It is something that Jack really enjoys and looks forward to. He gets the 2 to 1 support he needs to go out into the community. Something we find very difficult to do. 

I will take him out around where we live on my own. But there has been to many incidents that got too out of control. Because of that I won’t go further afield. Or anywhere likely to be busy on my own with him.

Last night right at the last second. We found out the session had been cancelled. One of the workers had a family emergency and couldn’t come. We know very well. Things happen that change plans. 

But this has happened on a number of occasions in the last year. Each time we find out at the last second. There seems nothing in place to provide any cover. It’s all very frustrating. Jack needs a lot of pre warning for any changes. I dread having to tell him. 

Luckily today Natalie was at home. So I talk Jack for a walk. He got to catch some Pokemon. Then we had McDonalds for tea, and watched the Scooby Doo movie. Jack was happy with the compromise. So was I. I’m not ashamed to admit McDonald is my guilty pleasure.

The other frustrating thing. Lily misses out on her time without Jack around. Where she gets undivided attention. We did manage to play in the garden for a bit. I was playing cricket, but Lily was hitting home runs. Still it was fun. Jack isn’t very sporty. So it’s nice for me that Lily enjoys sport.

Autism Services are a good thing. Even if occasionally frustrating. Our local one Derbyshire Autism Services, can be found at

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How autism friendly is the Royal Derby Hospital?

How autism friendly is the Royal Derby Hospital?

The conversation has popped up on occasion. What would happen if Jack needed to go to Children’s Accident & Emergency? How Autism friendly is the Royal Derby hospital? We have had plenty of appointments for Jack. But he hadn’t been to A&E since he was little. Until last night.

Jack scratched his eye, we left it for a while but it wasn’t showing any signs of getting better. So we decided with a touch of trepidation to go and get it looked at.

I can not praise the Royal Derby Hospital enough. Natalie explained the situation to the receptionist. A nurse came straight to see us, then we were taken to a quiet room. Where we would stay for the entire visit. All the fears of Jack having to cope with a busy waiting room. All taken away. We can’t thank the hospital enough for that.

We were really proud of how Jack coped. He  initially didn’t want them to put the dye in his eye. With plenty of encouragement he eventually let them do it. He has a small scratch on his eye. It should be fine after a few days. What had always been a major worry, turned out to be a fairly routine visit. The reason for that is the answer to the original question. How autism friendly is the Royal Derby Hospital. The answer in our experience, is very autism friendly.

How autism friendly have hospitals been in your experience? I’d like to hear about your experiences, please feel free to leave a comment below.

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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.

The School Situation

The School Situation

Lily came home from school yesterday visibly upset. The school situation has been weighing on our minds for some time. Main stream school might not be right for Lily.

She is a couple of years behind with her learning. The real struggle however is the “social” aspect of school. She has a very close friend (or boyfriend ass she would say) and another friend. Outside of those two she has always found it difficult to mix with the other children.

In some ways the school have been good on helping Lily. There are times where she goes into smaller groups. She enjoys these sessions. Outside of that, Lily is complaining the school is to busy. Having been in the classroom a few times. It is clear she is finding the environment overwhelming, the school situation is great source of stress at the moment.

Yesterday there was an incident with some other children. It’s not clear exactly what happened. Lily finds it difficult to express her feelings and to explain herself. This could be what led to the problem at school. 

This just adds more weight to the thought that the school isn’t right. After the battles we’ve been through to get Jack to the school he is now at. We know the difficult road that lies ahead. With the added fact that Lily is not as obviously severe as Jack.

It was a difficult evening for Jack. He was upset about Lily. Whilst still on edge about his broken phone. He came downstairs at 10pm demanding to go Pokemon hunting. It took about 30 minutes to get him back to bed. With the help of the “snuggly’s who I will introduce the snuggly’s in a separate post. They are very important to Jack, and deserve their own post.

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Welcome the Dad Does Autism

Welcome the Dad Does Autism

Welcome to Dad Does Autism, the first post on my blog. I’m starting with just a little insight into a day in the life of our family, just to get the ball rolling, and so you can get to know us a little. After a troublesome morning Jack came home from school in a good mood. Natalie had picked Lily straight up from school and taken her to a swimming lesson. So Jack has some time with just Dad. He wanted to go “Pokemon hunting”, meaning go for a walk and play PokemonGo. Jack is Pokemon obsessed, whether it be PokemonGo, the games on the Xbox or Nintendo Switch, or the toys and cards. Jack uses one of my old phones without a SIM card. Just for playing games and watching YouTube.

Jack has an hour drive home from school and tends to have a lot of pent up energy when he arrives home. Meaning he often needs to let off some steam when he gets home. If I’m home by myself and Lily doesn’t want to go outside it’s not always easy, but this was a perfect chance to have a walk and try and have a talk with Jack. Talking to Jack is not easy, he tends to talk at you, rather than talk to you. The conversation topic is 95% of the time his choosing, and if you try and switch the topic he tends to just carry on talking about what he wants to anyway.

Out for a walk

We had a short walk around our village. Probably 30-40 minutes. Apart from when he was losing a Pokemon battle which he got angry about, it was nice and calm. I did manage to get him to talk about taking his Nintendo Switch to school, and he agreed it should stay at home. Which was really good. Fingers crossed he sticks to that, at least for a whie.

We got 50 yards from home…when catastrophe struck. Jack suddenly lost grip of his phone and it dropped to the floor. Jacks dexterity isn’t very good, and this wasn’t the first time this phone has been dropped. But it was the one that completely broke the screen. Though he was visibly upset and angry, he didn’t react as badly as I first feared and he walked back to the house.

He got more irritated when we were back in the house. A few years ago our CAMHS worker, suggested letting Jack keep his phone at all times as a way of managing his anxiety, which was through the roof all of the time. It kind of worked, but probably wasn’t the best idea in hindsight. He is completely dependant on it now, and if he can’t have his phone for any reason, it causes problems.

Thankfully Lily came home from swimming and said he could use the phone she occasionally uses at home, so he won’t get bored in the taxi ride to school. Jack was happy with this and completely calmed down. It was a really proud moment to end the day. A mobile phone catastrophe wasn’t how I had planned on starting this, but when you live with autism things often don’t go to plan. You have to adjust as you go along, so in one way its quite apt.

I fully believe in bringing up Jack and Lily with positivity, giving them every chance to everything that they want to do. It won’t always be easy, there will be times when things become difficult. But I want the best for my kids, and autism isn’t a reason to hide away and give up on things. That was our welcome to Dad Does Autism. I hope you enjoy, and find useful the content we all bring to you.

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