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

I am really worried about Lily

I am really worried about Lily

I was woken this morning by the sound of Lily crying. When I went into her, she was hiding beneath her blanket sobbing away. I asked her what was the matter? She replied “I don’t want to go to school” I told her it was the school holidays. So she came out from the blanket and cheered up. It’s fair to say I am really worried about Lily.

Next Monday I am expecting this to be repeated. I don’t know what I can do to stop it either. Myself and Natalie have been talking over the school situation. We really don’t know what to do about it. Anyone who can help? It would be appreciated. Feel free to leave a comment or contact us directly through the email.

We had arranged for Lily to go to her cousins house. The one she saw yesterday. When I reminded her about that, she really cheered up. My brother came to pick her up and she went happily. After about 10 cuddles. Lily really doesn’t like leaving us. But she will, all be it slightly reluctantly if she’s going somewhere she likes.

An afternoon with Jack

That left me with just Jack for the afternoon. As he goes out with carers on Mondays. We just stayed at home. He wanted me to watch some episodes of Pokemon with him. Whilst also building some Lego. He got so many sets for Christmas and his birthday. I don’t think even half of them are built yet. This Lego Ninjago set is the one we are building currently. (Affiliate link)

Jack seemed to enjoy the fact I was doing his Lego for him. So he started playing on his Switch and left me to it. It wasn’t finished by the time he went out. So we agreed to finish it tomorrow.

I picked Lily up from her cousins. She had a really nice time, which was great. She didn’t want to come home, and got upset when it was time to leave. So we arranged for her to see him again tomorrow. It’s good that we were able to do that. But it’s another moment where I am really worried about Lily. She has always not liked leaving places. But she got really upset.

It feels like she is crying for help. But I don’t know how to help her. What do I do? It’s going to take a lot of thinking and guess work. To try and uncover what she needs. But we will get there. Just like we have done with Jack in the past.

Special Friends go Swimming

Special Friends go Swimming

Today’s post, special friends go swimming, is about a great local charity. But first, Jack was at his over night rest-bite on Friday night. As I wasn’t feeling too well. I didn’t take Lily out anywhere. We just sat together and watched some films. It was Captain Underpants and Boss Baby. As far as having to watch kids films as a dad goes. These are two of the better ones.

This morning I still wasn’t feeling great. But Natalie was taking Lily to the park, before going to pick Jack up. And I wasn’t getting out of it. I was alright once I got there. Lily had fun with the park to herself. 

The other day I talked about Jack’s dogs. Lily doesn’t use them to communicate. At least not yet. But she has her own dogs. She uses them for comfort, and to play. Unlike Jack. Who will take them out in his rucksack. Lily likes to hold them. At least for a while. Then I have to hold them. I’ve come up with what I think is an ingenious solutions.

Yes. As they are small. I can get them into my coat pocket. It does mean having to walk around the park. With teddies hanging out of your coat pockets. But such things don’t bother me. What I’m going to do in the summer. I haven’t worked out yet.

Special friends go swimming

After Natalie had brought Jack home. She took Lily to a swimming session. Organised by Special Friends. They are a small charity based in the town of Belper, in Derbyshire. If you are in the Derbyshire area. And you have a child with additional needs. I strongly recommend you check them out at http://www.special-friends.co.uk

Lily goes to the sibling group once a month. They also have a play group. They even organise things just for parents. I believe Natalie has been on a Mums one. I haven’t been on the dads night out yet. But would consider it. The need to get out and meet people who understand. Has really dawned on me recently.

They also do family events. Such as the swimming session today. Which was a sensory swim. With lights and floats etc that Lily really loved. Especially put on so a group of people in similar circumstances. Can get out and feel comfortable together. I can’t praise the work they do highly enough. 

Their next event is trampolining. All 4 of us will be going. It will be the first time taking Jack to one. So hopefully he enjoys it. As with anything new. Taking Jack comes with a bit of trepidation. Because we know that it’s like when it doesn’t go well. But he’s doing well at the moment. If things stay that way. Then I think he’s ready. 

Dad Does Autism

Lily Making A New Friend

Lily Making A New Friend

Some good news today about Lily making a new friend. We have done pretty well, with the seasonal viruses this year. Because I have asthma I usually pick up every bug going. Not so much this winter. This morning though, I woke up feeling terrible. So I’ve not got much done at all today.

Yesterday, when I took Lily to school. She saw the child she has been trying to make friends with. She started to walk over to him and then stopped. I told her go over, but she looked really nervous. After a bit of gentle persuasion she walked over. 

Then they we’re off walking and talking. Lily has come back from school much happier the last two days. She has told me all about playing with her new friend. It has made me so happy. Lily has always needed someone to come over to her. To ask her to play. For Lily to be the one initiating things is such a massive thing.

After the difficult start to the week for Lily. I’m so pleased it’s finished on such a positive note with Lily making a new friend. Hopefully this is the start of things getting much better for her.

Dad Does Autism

a short trip to the park

a short trip to the park

I made the most of the kids being back at school today, before a trip to the park in the afternoon. I cracked on getting everything sorted for the website. I now think I’ve got everything I need up and running. At least to the standard I’m currently capable of. It is a relief to finally get there. A lot of work and even more swearing has gone into it. But I I think (touch wood) I’m starting to get the hang of the web design stuff.

Kids both came home from school happy. Jack had his usual Monday afternoon out with DAS. So I used the time to take Lily for a trip to the park. Then to the shop. It’s not much. But it’s the little things that are important. Just making that little bit of time everyday. Has to become a priority. Even after a good day at school. She still appeared very agitated. And continues to lose her temper and get upset very quickly.

I could see how happy she was to get out with just me. Even if it wasn’t for long. As it got dark quite quickly. I look forward to the lighter evenings greatly. There was a group of kids from her school on the park. One boy from her class. The rest were older. Lily’s not phased by other kids being there which is good. Trying to get Jack on a park where there’s other kids. Can be almost impossible. So, overall it’s been a nice day. 

Now I’m spending the evening getting everything ready for Jack’s birthday which is tomorrow. He’s looking forward to it, and showing no signs of getting anxious about it. The Christmas build always brings lots of problems. But for his birthday we can keep it a bit more low key. So not to over stimulate him. We have found in the past. Trying to do to much doesn’t work. The change in routine and excitement can get to much and trigger behaviours.

So keeping things at Jack’s pace is the plan. Hopefully it all goes well.

Dad Does Autism

Sibling group problems & fun with dogs

Sibling group problems & fun with dogs

Once a month. Lily gets to go to a sibling group. It’s for children with brothers or sisters with Autism. It’s something else we get through Jack. Lily gets nothing in her own right. But it’s something she really enjoys and looks forward to. She usually spends the time doing some arts & crafts. We know there is at least one girl she talks to.

Unfortunately the sibling group was cancelled today. Due to not enough people attending. Lily was disappointed. She could really have done with it. After the way this weeks gone. I really hope this isn’t going to be a problem going forward. It already feels unfair that Jack gets to go out every week with rest-bites. Then twice a month with his over night rest-nite.

We try and do things with Lily when Jacks at rest-bite. But money is tight and we can’t always afford to go out. I know Lily feels she doesn’t get to do as much we Jack.

We did the usual go to my parents for dinner. As well as Mack the dog. The kids had my brothers dog Henry to play with. Who is staying with my parents for a few nights. So it was double the fun. We took them for a walk to the local park. Jack especially liked getting to hold Mack’s lead.

Jack took a video of Mack sitting on the park bench with him. He’s using TikTok. Jack loves creating videos on there. We didn’t really know what it was when he first went on there. We had some problems with him wanting to message everyone. So he can only use it on my phone. When supervised. So he can keep being creative. Which I think is important.

Jacks bond with Mack is great. He’s never any calmer than when he’s with him. Jacks love for animals and nature is really nice to see. Lily is growing up the same way. She told me today Greta Thunberg was her hero.

It was a nice visit overall. Unfortunately as Lily got tired. She became overwrought and got upset. This caused Jack to get angry. So I took him outside to try and calm him down. He was seeking deep pressure. To help him regulate his sensory needs and anxiety. So we pulled and pushed each other about for a few minutes.

In the distance we heard a dog bark. So I barked back. Much to Jacks amusement. So I ended up barking at this dog for 5-10 minutes. The things we do to help our children. It worked though, as Jack was ready to go back inside.

Dad Does Autism

Lily is really struggling at the moment

Lily is really struggling at the moment

It has been clear for a while, that Lily is really struggling. Both at home and at school, because Jacks needs are so high, sometimes I feel like I’m not doing enough for Lily. 

Last night after bumping her shoulder she got really upset. Unfortunately she takes after her dad with clumsiness. She is always bumping into things, or stubbing her toe. Anyway, Natalie brought Lily into our room, where we had a big cuddle, and a talk.

Lily is really struggling

We managed to get out of Lily, that she was sick of getting hurt. With what happened at school recently. We asked if anything else had happened at school. She kept saying no. It was just when she’s playing. She did have a nasty fall from a scooter at school recently, Which caused a nasty cut. 

So, there is probably some truth. To that being why she keeps getting really upset at the moment. But I am sure there is more to it than that. Natalie is certain of it, and it has become very clear that Lily is really struggling.

She is certainly finding all aspects of school difficult at the moment. I think she is having difficulty communicating with the other children as effectively as she would like. She can talk. But her communication and understanding isn’t at the level expected of an 8 year old. But as she looks completely fine. The other children expect her to be on the same level as them. So when she doesn’t understand what’s going on. She tends to withdraw and go quiet. Which is perhaps making some of the other kids. Almost see it as Lily being rude. Or to 8 year olds as being strange.

It’s clear from talks we’ve had with school. That they have expected and assumed, Lily to have more understanding of the social side of school than she does. Last week when we went into her class. We watched as Lily stood in the middle of the room as children rushed around her. She looked lost and frozen to the spot. We pointed this out to her teacher. Who admitted he hasn’t noticed it before. But it was really obvious now we’d pointed it out.

The school have been good and are doing things to help Lily. But they are not a specialist school for children with autism. Those thoughts of that’s where she needs to be are getting stronger. But I also know she would be really sad to leave this school. There is a lot of thinking to do.

At home

At home. She is craving more one to one attention. Which is difficult. Especially when I’m on my own at home with Jack and Lily. But I’ve just got to find that time for her. She also gets frustrated with Jack. Lily absolutely loves playing with Jack. But everything he does has to be on his terms. One day he will happily play with Lily for hours. Whether that be on the Xbox or just pretend play. The next day he doesn’t even want her to come in his room. I don’t know why. So for Lily it is impossible for her to understand. 

Today I took her to play some football. Though with Lily you can’t just kick a ball around. She has to be the coach. She goes through a whole coaching session. That she’s had I guess in a football club session. Or a PE lesson. Which includes other children she knows. You must at all times do as she says. It was good to see her enjoying herself.

Jack came to see what we were doing later on and pretended to be a ninja. Then I took them to the shop to get some sweets. After that Jack went to back to his room. Where he tends to spend most Saturdays. I think the school week tires him out. So we usually let him not do much on a Saturday.

Whilst going through his school bag. I found a Star of the Week award. Jack loves to receive praise. So it was unusual for him not to have showed it us on Friday. When I showed him what I had found his face lit up. He said he had forgotten about it. Then took it straight to show his mum.

Star of the week award

It’s amazing how far Jack has come in the last 3 months. Little reminders like this are not just good for him. But for all of us.

Dad Does Autism

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.

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

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.

Dad Does Autism