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.