Migrating

Almost everywhere we look today migration is bandied about as a bad thing. Why?

We are, by nature, a curious folk and this curiosity has led to all the amazing things we now have in the world.  Migration brings new people, experiences, viewpoints, cultures, tastes, sounds, sights, smells, collaborations and discoveries.

How many of us love a good curry?  Or pizza?  Burger?  Crepes?  Falafel?  Bake and Buljol?

We may not like or agree with everyone in the world but the beauty of freedom is that if you do not like someone you can move away.  (I almost wrote 'walk' then realised that I usually 'roll'!!)

I am pretty sure that all those people shouting about immigrants being bad enjoy the benefits of those immigrants.  How many of our doctors and nurses are immigrants?  What about cleaners? Teachers? Teaching Assistants?  Carers?  Restaurant staff?  Hotel staff?  Builders? Office staff?

Just as so many people have chosen to come to this country many of our natives have chosen to emigrate and give the benefit of their skills to another nation.  This freedom has allowed us to collaborate with each other and great discoveries have been made. 

We are a world of innovators-from the person creating recipes in their kitchen to the person designing a space station we all contribute to the world.  I could not reach so many of you without the internet being so easily accessible from my bed and this connectivity has eased my isolation immeasurably.

IN the spirit of migration a friend recently suggested that I blog with Wordpress so that I can reach a wider audience and in the few shorts days of doing just that I have received more feedback from readers than in all the time with Blogger so, in the spirit of migration, I have decided to move.  All my posts have been transferred and this will be my last Blogger post.

Please do join me in my new Wordpress home.

The Right Thing?

After a busy couple of days I desperately needed to rest today. I understand this, B understands this and The Kids understand this. 

Here's the thing, understanding is not the same as accepting.

You need to bear with me for this post.

My little Princess likes to get what she wants (who doesn't?!) and she wanted to go swimming today.  There was whining and shouting and hitting and tears and it was really exhausting to help her to regain calm.

I eventually settled her next to me, turned the television on and she was content with Scooby Doo.  All was well again until I had to make a few calls.

I was on the phone with our solicitor and she was ok but when I started my second call the volume was turned up and she grabbed the phone from my hand.  I didn't know what to do- the estate agent was on the line and I really didn't want L to scream in his ear!

I stayed calm, looked straight at her and I spoke quietly telling her that I needed the phone and that she had to give it back.  It was so tempting to threaten her with a punishment.  I could understand why some parents would want to spank their kids but that is not an acceptable option and actually serves to suppress emotion and build resentment.

I repeated what I said and then I waited.  It seemed like a long time but it was probably 45 seconds then she tossed it onto the bed.

Relief!  I got the phone back and continued my call thinking it was finished.  No such luck.

The volume was turned up fully and I couldn't hear the person on the phone so I switched the television off.  Then she hit me with the remote control. That stopped when it didn't get a reaction. 

I continued with the calls that had to be made and hoped she would settle down but she started shouting (luckily I was talking to B at that point so it was not as embarrassing as it could have been!).  I ignored the shouting for the most part so my little Princess stormed out of the room and I breathed a sigh of relief. Finally it's over, right?

It was not over.

Just as I was about to call the bank manager L came to my door and threw something.  It hit me.  On my head.

She was beside herself! She had not really intended to hurt me.

She just wanted me to stop talking on the phone and was distraught that she had caused injury.

Don't get the wrong idea, she is definitely not a prima donna and usually is very sweet but she needs more practice with controlling her behaviour when she feels big emotions.  So what happens now?

As difficult as the experience was it is just an example of living with a seven year old and the best consequence was seeing the impact of her actions and how much I was hurt.

The Kids are fully aware of my physical limitations and sometimes take advantage of this when they are upset but this is something we are all trying to figure out.  Together.

Lots of people are going to think that I should have delayed my phone calls and given her my attention.  She didn't want my attention, she wanted to watch Scooby Doo.

Lots of others are likely going to think she should be punished because her behaviour was so unacceptable.  I agree that her behaviour was unacceptable.

The only way for that to change is for her to want to change it.

Changing perspectives

The Kids are quite mature for their age so I sometimes forget how young they are (7 & 9) until they remind me - loudly.

Having a parent with a chronic illness is scary for a child.  To be honest it is scary for adults so we can only imagine how amplified a child's fear would be. 

Scared children are not always able to articulate those emotions so they communicate emotionally.

Too often these reactions are considered 'naughty'. 




The Kids used to sleep in their own rooms without issue - until my health deteriorated.  Since then I can track their need for extra cuddles increasing as my illness worsened.  It's not rocket science, is it?  Is it really so bad to give that extra reassurance?  I don't think so.  In fact, I think I would be doing a pretty poor job of being a mummy if I ignored these needs.

That fear and frustration can turn to anger.  Anger at how unfair things are: 

Why does mummy have this illness? 

Why can't it be someone else's parent?

I hate Lupus!

Why can't you take me swimming/etc? My friend's mum/dad takes them! 

I hate you!  

I wish I had a different mummy! 

You ruined my life! 

I don't want to live here anymore!  

I want a new family! 

Why are we always stuck at home? 

This life is the worst! 

You're a bad mummy!

You're the worst mummy!


I think I've heard it all from The Kids and it hurt and I cried. Then I had to accept the way they were feeling and help them to understand and cope with those big feelings.

Think about how you feel when you're angry.  Now think about how much self control you have to exert to control your reactions.


Can we really expect children to manage their response to anger as well as adults?


(And, lets be honest, there are lots of times adults have temper tantrums!!)

I am very definitely guilty of not always having enough energy to deal with emotional overflows.  I have to dig really deep into my 'magic mummy strength' and somehow manage to get through it.  This is by no means a smooth or pretty experience. 

There is often crying/shouting/screaming/throwing things/hitting/biting and if we are not at home I am acutely aware of people staring at us.  So what do I actually do?

- make sure they are both safe

- take a breath and then another (a bit like when I was in labour!!)

- remind myself to ignore all the people staring at us

- explain to the child who is not having the emotional outpouring that I need to help the other so I need them to be very patient with us both

- go to the struggling child and talk

There is no magic formula; most of the time just letting them know I'm there and understand how they are feeling helps them to calm down.  Sometimes they just need some space and time alone so I give as much as I can and stay nearby. Other times they need me to hold them without saying anything; I think the close physical contact anchors them so they begin to feel secure again.

A hug works wonders.

Tonight we got home quite late and my son was feeling pretty bad.  He was exhausted, hungry and overwhelmed and  he refused to come out of the car - he locked himself in and said some not-so-nice things. I was exhausted, every part of me hurt and my daughter wanted my attention. What do I do?

I asked L to bear with me while I helped M, then I waited until I could unlock the doors and spoke to him quietly explaining we need to go inside. He refused and  asked me to bring a pillow and said he was going to sleep in the car. I could see he was in desperate need of some alone time so I explained that I could not leave him there and suggested that he could sleep on the futon all by himself.  I told him that I understood he wanted to be alone. 

He asked if he could make a den and when I agreed he got out of the car without any problems.  I waited and walked with him while I gave my daughter a piggy-back.  I cannot explain how painful that piggy back was....but it helped L to feel that she was not forgotten or left out.

I think if I had shouted or threatened things would have escalated and we would all be feeling pretty miserable.

As soon as we got inside my son was very clearly feeling much better and happier. He had some food, the den was built and the rest of the night passed without difficulty.

Phew!!!

Flotsam

Ever get the feeling that everyone around you is surging ahead and you're left in their wake?

Disability is a tricky thing; the world is not as accommodating as people think and that realisation hits hard when you're the one on the outside looking in.

When my children were old enough for school I was excited for them to enjoy their school years as I enjoyed mine but my experience as a disabled parent was depressing to say the least.  Everything that was available for parents was severely inaccessible and the fight to get access was just exhausting.  The school became a battleground.  I could see the difference in the experiences of my able-bodied counterparts and it made me very, very sad.

Time came when we removed our children from school (that's a whole other story) and immediately our anxiety levels reduced and gave us much needed relief. The disappointment I felt was surprising given the difficult experiences we had with the Headteacher but I felt that I had let my children down.  

I had deprived them of something fun.  My disability had taken something away from us- again. I am not supposed to restrict my children- I'm supposed to give them opportunities to learn and grow and help them to blossom and shine.

Time and again I have created loss for my family while friends and relatives have surged ahead; calls/emails and invitations became less and less frequent and suddenly the people I counted on, the ones I thought of as my support circle, were gone.

I get it, it's sad and depressing and boring and monotonous to be around someone with no good news who needs so much help -  like an albatross around your neck.

I'm flotsam. 

Journalists needed

"Journalism is the work and distribution of reports on the interaction of events, facts, ideas, and people that are the "news of the day" and that informs society to at least some degree. The word applies to the occupation (professional or not), the methods of gathering information, and the organising literary styles."

Have you seen the television drama 'The Newsroom'?  It only lasted three seasons (and by the end was a bit disappointing) but it started out well and was refreshing in the way it showed how news reporting no longer gives people actual information with which they can have informed opinions and decisions. 

The reality of current news reporting is so similar as to be embarrassing.

Throughout the Brexit campaigning there was a very great deal of nonsense bandied about and there was a very, very disappointing lack of actual facts and information available to Joe Public.  The Guardian published an article on Saturday 25th June which illustrates the ignorance created by a lack of actual journalism. 

Sure we have lots of newspapers, magazines, radio and television news and talk shows but the most widely available of these  have very sadly become much like their US counterparts where they parrot what the politicians say instead of actually reporting the real information.  Mr Orwell was right.

Now that the votes have been counted we are seeing reports and articles informing us of everything we gain from being part of the EU and what we are losing.  I have even seen an article debunking the most ridiculous claims of the Leave campaign.

Where was this information before the vote?  The information was published but if it is not easy for Joe Public to understand it may as well be non-existent.

Now that its too late we have journalists creating easier-to-understand pieces and many people are realising that they did not understand what they were voting for.

The Aftermath

Things are certainly changing and we can only guess at what the future holds but we are still moving forward; we still have to pay our rent/mortgage and the utility companies are still going to send bills for us to pay.

What a depressing thought, right?  Everyone who voted for Brexit thought that it would make things better and in the long term it may very well do that but things are very unstable right now.  

We're ordinary folk, you and I, so how will Brexit change our lives?

Our medical staff will no longer have the protection of working hours limits and will likely be pushed into working too many hours to be safe.

Our disabled/vulnerable neighbours will no longer have the European Court of Human Rights to stand up for them. [We have seen the UK courts ignore human rights which is why cases went to the European court.]

Our European neighbours  may lose the right to live in the UK in the homes they have created within the communities their children have established friendships and go to school.

Our young people who were excited about the opportunities within the EU need to reconsider their options.

British expats who live within the EU may lose the rights they have and be forced to move back to the UK.

And our children will inherit the long term effects.

There are so many questions still to be answered: 

- what will Scotland do? 

- and Northern Ireland? 

- when will we officially cease to be part of the EU? 

- what effect will this have on travel and trade between us and the EU? 

- what kind of country have we become that so many people are afraid of/hate immigrants?

  

- why does no one talk about the number of Brits who emigrate?  

- or the value of all the immigrants in the UK and how much they contribute to the economy?

Question, questions.....now we need answers.....

'Yes' or 'No'?

I just read an article on the appropriateness of 'age-appropriate' rulings.

I like the article; it has the right balance of common sense and practicality and is easy to understand.

As a disabled parent it is not so straightforward as being able to get up and get the ketchup. (You've got to read the article.)

I have lost count the number of times my children have asked me to help them with something and I have had to explain that I can't.  I'm not kidding or exaggerating when I say it's heart-breaking to have to tell them that I can't.

My children have cried and begged me to get/do things for them and my heart breaks when I have to say that I can't.  They get angry. That's ok. I get angry too.

No matter what their Physical, Mental or Emotional health my disability is here. 

All too often when children make requests the default answer for parents/caregivers is 'no'. Many people give this response automatically.

There are many things I am unable to do for my children. I am acutely aware of what I consider to be my parenting shortcomings. 

So why say no if you can say yes?  I learned from my Aunty Paula that it's ok to say yes. It's no big deal. 

Think about it. 

What would happen if you said yes as often as you could? This does not mean saying yes to everything, rather ask yourself why you would be saying no, and then give your children the courtesy of an explanation.

Children, by their very nature, are curious folk who long to be independent but need to feel secure and reassured.

They will of course push boundaries -it would be worrying if they didn't!- but we are the line that keeps them [Physically, Mentally and Emotionally] safe.

I may not be able to cook a meal for my family or play football with the kids but I can kiss the hurts, wipe the tears and give them reassurance and security.

I give The Kids the security they need so that they can talk to me about anything without fear of punishment or judgment. Anything.

And they trust that I will always try my very best because they know that I do.

It is not so easy to give practical advice on how to handle particular situations because it really depends on the age of the child and on the disability you have but there is a way forward. 

Talk as a family about the difficulties you face and listen to their suggested solutions; children often have an uncluttered view that can be very refreshing.

Focus on your strengths and work as a team.

(If you want to chat privately send me an email.)

Food for thought

I'm very lucky that I have a brother-in-law who enjoys cooking and is a good cook (they're not the same thing!) who has agreed to help me with preparing meals.

Each week I send him the recipes we would like to have and he sources, prepares and brings them over. This week we have traditional beef lasagne, butternut squash & sweet potato soup with dumplings and banana teabread.  This will last for the week and we also have extra portions for freezing.

So many disabled parents/people do not have someone like this- or do they?

Have you actually asked anyone to help in this way? 

It is likely that someone would do it - you just need to ask. I was nervous before I asked and I was prepared to hear that he just didn't have the time but I accepted that I would be no worse off and here we are getting freshly cooked, healthy food every week.

Our circumstances are a bit more complicated because we have multiple food allergies to cater for so we have our own recipes but if you do not have allergies/special food needs then asking a friend or neighbour to cook a bit extra of whatever they're having really will not inconvenience them at all.

*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.