What is a parent carer? – a piece by an unknown author

What is a parent carer? – a piece by an unknown author

The following was not wrote by me, it was found on Facebook by Natalie and is by an unknown author, called what is a parent carer?

What is a parent carer?

It’s staying at home with our feet up all day,
While others work our wages they pay.
Its getting the offers, the discounts and deals,
All to help with our child’s extra needs.
It’s the DLA we get for no reason,
It’s jumping the ques while others stand freezing.
It sounds so easy if these perceptions were true!
Here’s a few truths I’ll share with you.

It’s the bruises we hide from the meltdown last night
From holding them until they had no more fight
Its the regimented life that we now live
For a family meal out what we wouldn’t give
It’s the sleep we don’t get and the nights out we miss
It’s the explanation to others about all of this

It’s the fights that we face in every single way to get their needs met at the end of the day
Its the story you tell for the hundredth time to various people, you want to cry
It’s the tears we hide because we’re scared we’re not coping
It’s the smiles we paint on there’s no use in moping

It’s the splints we fit and the exercises we do physio, nurse and chef we are too.
It’s the appointments to remember with doctors and dentist to be honest I’m not sure how were not all demented.
It’s the progress reviews we sit through at school hearing their struggles it all seems so cruel

Its the stares in the playground, the parties they dont get asked too
It’s explaining to them why on the 10th time they’ve asked you
It’s buying the 12th pair of shoes in a term because our children destroy them when will they learn

It’s fighting the system that’s already broke
But carrying on with hope against hope
Its apologising first for what is to come the courage to go out when you’d rather stay home

It’s educating teacher family and friend
about the conditions and that they wont mend
It’s the guilt that we feel that were not always enough
and our children’s siblings who have it rough
It’s the schools changing routines that make our day
and impacts our child in every way

It’s wanting to work but not having the time it’s the desperation to have something that’s solely mine
It’s the not giving up when the going gets tough
Its a appreciating the smooth and riding the rough
It’s the smiles that they give you and the light in their eyes
It’s the ‘ I love you’s’ that take us by surprise
It’s the others you meet in this new way of life that gets you through the troubles and strife

It’s the strength you didn’t know you possessed it’s the times you went on even when you were stressed
Its the love that you have for your child who is special that gets us through these tasks
but some understanding and empathy from others is not too much to ask!

At this time the Author is unknown but whoever wrote this is amazing ❤💙🌈

Dad Does Autism

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.

Are Dogs Good For Autistic Children?

Are Dogs Good For Autistic Children?


It was back to the Sunday routine of going to my parents house this week. After not going last week. When I was there I found myself googling, “are dogs good for autistic children?” The reason being there has been talk of us possibly getting a dog.

It’s not something that is in the pipeline to happen immediately, and I just wanted to have a bit of a look at what information I could find. I found myself reading up on service dogs and therapy dogs. I’d heard them mentioned before, but this was the first time I’d read up on them.

It was fascinating, but we’d be looking at just getting a “normal” dog. I make no secret of the fact that I’d love to have a dog. I was brought up around dogs, and absolutely love my parents dog Mack. When I still lived with my parents, I used to go out with our dog Dylan for hours. I do miss that a lot.

We love animals

I come from a family that loves animals, and that’s certainly been passed on to Jack & Lily. They both love spending time with Mack, and my brothers dog Henry. But Jack especially, there are visible benefits from him being around a dog.

Although he gets excited around dogs, as far as anxiety goes, it calms him a lot. So would having his own dog keep him calmer at home? Having Dylan when I lived with my parents certainly helped with my mental health. Though it’s different with Jack, I do think it would help him too. 

It would give him some companionship, something to love and look after. That unconditional companionship and friendship, is something I think Jack really needs. 

Whilst also giving us all a reason to get out for some nice walks. Similar to how Jack never takes it out on his sister, when in a meltdown. He also never takes it out on animals that may be around.

It would be so helpful in so many ways. Unfortunately as we live in a rented property, it’s not as simple as just going and getting a dog. We have to get permission first, and it could involve an increase in rent. The rent is high enough as it is. So we will have to think about it.

We’d love to hear about your pets

There are lots of positive stories about dogs and autistic people, so that feeling of it being such a positive thing for Jack. Really makes me want to do it. I’d love to hear of any positive steories about autism and pets, or even negative ones where it didn’t work out. Perspective is always important. If your not living around autism, we’d still love hear about your pets, Jack and Lily always like to hear about people’s pets. So leave a comment below if you’d like to share what pets you have.

If you don’t have a dog but are thinking about getting one, click here to view an excellent post 102 scientific benefits of having a dog, by fluentwoof.com. It’s a great read, and if this doesn’t convince you to get a dog, nothing will. Then of course there is the question of what type of dog to get? Any dog can be trained to be a great family pet, but some breeds are definitely more suited than others. Like my personal favourite the Collie. For comprehensive information on this, I recommend reading this article by Your Dog Advisor, best dogs for children. There’s lots of information, and they list the best dog breeds to have with children. As always, thanks for reading.

Dad Does Autism

Here’s a short 30 second video jack made of walking with Mack, despite only being short, it gives a real insight to Jacks personality
What’s your creative outlet?

What’s your creative outlet?

We went to my parents yesterday, I will talk more about that in a post I’m currently working on. Having a creative outlet is very important. As is usually the case, Lily and grandma got out the art stuff. What’s your creative outlet?

Pinecones

Lily had spotted some drawing grandma had been doing, and wanted to help her finishes them off. I really love the pine cone picture. Grandma is really good at art, even if she doesn’t like to admit it. I spend time doing art with Lily, but it’s good she gets time to do it with someone who is good. The artistic flare wasn’t passed down to me. I have an unsteady hand and a serious lack of patience.

grandmas daffodils

My mum sat with Lily and sketched these daffodils off in a matter of minutes. Then claims not to be very good. Lily was colouring in these daffodils, which are lovely.

Lily’s daffodils

I have got together quite a large pile of Lily’s art, she likes to leave it all other the place. But I’ve rounded a lot of it up. One thing I have noticed, is she seems to start a lot of work and leave it unfinished. Maybe it’s supposed to be like that, every artist has to have there style I guess. I will look at it with her, and see if she what’s to finish things off before sharing them.

It is so important to have a creative outlet. I found mine with writing, Lily has her art and Jack likes making videos. He makes some on TikTok at the moment and really wants learn how to make them himself. Click here to see one he made. What’s your creative outlet? I’d love to hear about them in the comments below.

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

Feeling Humbled

Feeling Humbled

I’m happy to report I’m feeling better today. I haven’t completely shaken off the cold yet, but I’m getting there. I’m also feeling a bit more positive in general. In fact I’d say I’m feeling humbled.

Like I’ve said before. This blog was a long time in the making. I’ve wanted to do it for years. A decade ago I used to write a lot, including a lot of fiction, and I was happy putting it out there into the public domain. Somewhere along the way I lost my confidence, and my motivation.

Without trying to make a big deal of it, it was a big effort to get things thing started. To get myself in the frame of mind to do it, took a long time. But now I’ve started, the confidence and the motivation are back.

Feeling humbled

One thing I wasn’t thinking of when I started this, was the people I’d meet along the way. It’s only been a short time, but already I’ve come across some great people. Especially on twitter, where the “autism community” and the “writing community” are absolutely fantastic. If I hadn’t decided to do this, I probably wouldn’t have come across these great people.

The past 4 or 5 days have been pretty tough. Mentally & physically I had been worn down, then out came the cold, which was probably a factor in it all. But I have received some lovely comments and messages of support, both on here and on twitter. They really did have me feeling humbled.

Finding people you can relate too, isn’t always easy, but I’ve found a few in the past month or so. So to all those who had kind words to say, thank you. I am truly feeling humbled. I am really enjoying doing this, especially with Jack and Lily wanting to get involved themselves. That’s really helped with the creative side. I want this to be more than just day to day life and autism. This can be my creative outlet and encourage Jack and Lily to be creative also. I hope you continue to enjoy this as much as I do.

Carers don’t have time to be ill

Carers don’t have time to be ill

I woke up today feeling absolutely terrible, and carers don’t have time to be ill. Pretty sure it’s just a cold, and I haven’t been struck down with the dreaded Coronavirus. But I feel terrible anyway. My temperature is really high and I just want to sleep. Not much time for that though.

Still have to get the kids ready for school. Lily still needs walking to school, and then back again. I will admit to spending most of the time the kids were at school, curled up feeling sorry for myself.

Jack came home in one of his agitated moods. This quite often happens with the long drive home he has. The way we deal with this is going for a walk around our village. Jack goes on PokemonGo, and by the time we get back he has usually settled down.

I really didn’t have the energy for it today, but not doing it would prove to be harder. As Jack wouldn’t settle without going. Of course today he didn’t want to come into the house when we got back. It took a lot of effort to finally get him inside. I made him a sandwich and he finally settled down. Now I’m off to curl up and feel sorry for myself. At least until I am next wanted for something. Which probably won’t be long. Carers don’t have time to be ill.

Dad Does Autism

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.

Lily’s Art Gallery

Lily’s Art Gallery

Have you been looking forward to seeing Lily’s Art? As has been promised for a while, here is the beginning of Lily’s Art Gallery. I believe letting your children show their creative side is so important, just as it is for us adults. For Lily it’s arts and crafts. How do you show your creative side?

I’ve been scratching my head for a while, for the best way to do this, and in the end I’ve decided to start off with this as an opening post. Done like any normal post, and over time I will add more posts, and they will be all saved to the same category. The I’ll put a link on the homepage, that will have all of Lily’s different arts and crafts posts together. So it will be like her own little gallery, and her little corner of this website. To see the full Lily’s Art Gallery section, click here.

All the artwork has been named by Lily, and we both hope you enjoy them. Lily would like to know which one of the pieces of art, that people like the best. Do you have a favourite? Let us know by leaving a comment below.

Lily’s Art Gallery
Lily’s Tree
The Calendar Tree
The Amazing Rocket
Lily’s Art Gallery 2
Blobs and Hand

Dad Does Autism

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.