*Not for disabled parents

I just read an article about how being organised is good for us and why  it is important to teach our kids how to organise their lives.  The article went on to give some very handy tips on things parents can do to help their kids learn to be organised.  And it was irrelevant to disabled parents- other than making me feel bad about all the things I can't do anymore.

Before I had to retire I was a very organised person.  I like things to have their place and then I can always find whatever I need. When the kids were babies they would tidy up with me and pretty soon they were able to tidy up independently (and put things in the right place).

So how did we get here?

I know exactly how we got here.  I got sick.

This is not unique to my family.  Not by a long shot.  The big question - how do we get back to being an organised family?

I'm pretty useless being stuck in bed most of the time and I have consciously stopped using the little energy I have for things like tidying up.  Why?  Because, to be honest, there are more important things like having fun with my children.

Disabled parents don't have the luxury of being able to do both so we need to choose.

We do the best we can- which is all we can ask of anyone. 

Don't beat yourself up when you can't tidy up or hoover or do the laundry. Yes, these are essential tasks and need to get done somehow but use the carers around you.  You may not have a formal carer but there are people around you who are willing to help. (It's hard to swallow your pride I know... I still have trouble asking for help.)

So, my kids are semi-slobs these days but, every now and again, I see glimpses of the way their minds work and I can see organisation there.  And that's enough for now.

How do you know?

How do you know what the right thing to do is?

M has eczema and allergies and he really, really hates using his medicine. When he was younger it was simply routine to apply them twice daily but he's nine years old now and since he was seven he has been resisting- a lot.

He's a young man and I have to respect his wishes, after all it is his body. The alternative is what? Forcing him? Then what? 

Would it be acceptable to forcibly apply medication to the body of a teenager or adult? Of course not. It isn't acceptable to do that to a child either.

How do you get a child to understand the importance of something and to do it even if they don't like it?

Maybe I've been too lenient and he should just do as he's told and shut up about it?

That's just not how we parent.

We all deserve to be respected and that includes children. It is right that children be trusted and respected just as it is vital for them to know that being frustrated or angry or sad is normal. We do, however, have a responsibility to ensure our reactions are managed and appropriate.

Easier said than done.

Imagine being itchy all over all the time and having to use two or three emollients twice daily on top of taking oral medicine and inhalers and this is topped off with not being able to eat the nice things you want that everyone else can have.

I think I'd be screaming in frustration.

So, back to my question, how do you know what the right thing to do is?

And how do you get a child to understand and accept that thing?

Mindfulness

After a lovely chat with a friend this afternoon I decided to finally get to one of the FutureLearn courses I'd signed up for-Mindfulness for Wellbeing and Peak Performance. 

Mindfulness is something that has interested me for some time now and I've been trying to practice meditation as well but I have no frame of reference so no idea how I'm doing!

Back to the course, the videos were interesting but the 'discussion' was a bit all over the place I thought. There were so many comments that in the end I decided to post my thoughts and just see what responses I got. One of the posts I submitted was about children already being mindful and parents usually looking at the 'big picture' and how this clash is likely the culprit of many disagreements. 



Another subscriber took my post to mean that I was looking for advice and suggested that a greater understanding of the other person's position may reduce the number and intensity of clashes. Ummm, you think?!

It is pretty well established that if you speak to kids on their level [and not patronisingly] they tend to give a more favourable response.  To be honest, the old adage 'do unto others' is a good standard to live by; it is baffling that so many people do not recognise that children are individuals to be respected (and not just there to be seen and not heard or follow orders).

Here I am

I've been thinking about starting this blog for a while and [after spending what felt like hours trying to come up with a blog name that wasn't already taken] I'm finally here writing the first post.

The kids are keen though I'm wondering if they really know what blogging involves-time will tell.

I have systemic lupus erythematosus and fibromyalgia.  A few years ago the medicine I was prescribed began to produce unbearable side effects so I had to stop taking them. My illness became uncontrolled and things got pretty bad so I had to retire. My health was worsening and I could no longer self-care. 

Around the same time(ish) we discovered M's allergies and asthma which added to the eczema that they both have.

On top of these health issues things were made worse by a discriminating school with no regard for safety or accessibility and a dishonest headteacher [can you tell I have residual anger?] so B and I decided to home educate The Kids.

This road has not been easy.

Educating The Kids at school would be an easier and simpler solution- but would it be the RIGHT solution?

We've had some great times and we've had times when I am stuck in bed (literally!) for weeks. It is  a challenging path but anything worth doing is worth doing well, or something like that.