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.

My name is Adam. I live with my partner Natalie, and our 2 children Jack and Lily. Both children are autistic, it is now my mission to show what life around autism is like. Spread the awareness and gain the acceptance that autistic people deserve.

16 thoughts on “The easy life of carers

  • March 12, 2020 at 7:02 pm
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    so pleased you got some recognition for your blog, you have put alot of work into it, keep up the good work

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    • March 12, 2020 at 8:01 pm
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      Thanks 😊

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  • March 13, 2020 at 12:55 pm
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    That’s wonderful what you are doing. I had no idea how much work goes into being a carer. It seems exhausting but must also be gratifying. I agree carers should be treated as heroes.
    Great job on the blog. A book idea sounds fantastic. Go for it!

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    • March 13, 2020 at 4:26 pm
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      Thanks, as a long term goal, a book is definitely on the list 😊

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  • March 13, 2020 at 2:02 pm
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    My mother was a carer for a family friend for a year and it nearly broke her. I think it’s shocking how little support (financial or otherwise) we give to carers, you are all heroes and should be recognised as such. I hope everything goes as well as possible for Lily and Jack, they are lucky to have parents like you and Natalie. And congrats on having this blog recognised too, you write so well, it’s going to be a big help to many, I’m sure. Lisa

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    • March 13, 2020 at 4:30 pm
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      Thank you, until you see it first hand you don’t realise what’s involved. Too many people have the wrong idea about what it entails.

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  • March 13, 2020 at 2:30 pm
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    It sounds like you have had a very busy week with all the appointments! I hope you all have a nice restful weekend. That is such an amazing achievement to have your blog shared with professions and parents. I am sure your words and experiences can help and support so many other’s in a similar situation. Keep up the fab work, and you never know, you could be writing that book one day in the future! <3 xx

    Bexa | http://www.hellobexa.com

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    • March 13, 2020 at 4:31 pm
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      Thank you, yeah I’m giddy with excitement at a bit of recognition. It’s always nice.

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  • March 13, 2020 at 4:35 pm
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    Keep up the great work guys

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    • March 13, 2020 at 7:27 pm
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      Thanks 😊

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  • March 13, 2020 at 6:19 pm
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    You doing great job and that’s why you have nice supports. I honestly can tell this is tough and as a parent as well. Keep up the good work!

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    • March 13, 2020 at 7:27 pm
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      Thank you 😊

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  • March 13, 2020 at 7:15 pm
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    Oh my gosh I would be infuriated if I heard that. Carers have some of the hardest “jobs” out there – it can be physically and emotionally draining, esp. when it’s for a loved one. I only put jobs in quotes because I know many of us don’t think of it as a job but a blessing to be able to do so for our loved ones which I truly believe it is. But in reality it has the characteristics of a job – challenging, demanding, draining at times…. And for some it really is their job – an for those people I am also so grateful that theyve dedicated their careers to helping us

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    • March 13, 2020 at 7:33 pm
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      You are absolutely right!!

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  • March 13, 2020 at 7:58 pm
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    Recognition adds some honey to the pot of bittersweetness, especially when it means that you have helped make more people aware of how hard it is to be a carer. It drained my grandmother in the final years looking after her husband.

    It takes dedication and so much love! It is not ‘the easy life of carers’ but rather a life of hidden pain. One of the reasons I love writing so much is because I can share pet peeves and show others why they ought not be pet peeves at all.

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    • March 13, 2020 at 9:05 pm
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      Hidden pain is an excellent way of describing it.

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