R: A to Z of Family Rights and Family Lives

We are nearing the end of our A to Z, only eight more left to go now.

Once again, we asked our friends over on Bringing Us Together – a place to share what R stood for.  Here are their responses.

R is for Rawnsley as we think of Thomas’s Rawnsley’s family and their recent loss and their fight for justice.  The family and supporters are organising a day on June 4th in London for a silent demonstration for the IAM Thomas campaign.

R - A to Z of Family Rights and Family LivesR is for Rights.  We believe it is never too late to teach our kids about human rights.   It is our disabled children’s rights to have the same opportunities as their non-disabled brothers and sisters.  It is their human rights to feel safe, to play, to have an education, to have a voice, and to have leisure time, and to have health care.  Everyone has the right to know and claim their human rights, at any age in life. We believe people of every age must have a meaningful and continuous say in ensuring the full enjoyment of their human rights – starting with their own communities, continuing at national levels to ensure that governments follow through on their commitments, as well as having the opportunity to connect globally with people around the world to create rights-respecting societies worldwide.

R is for Resilience.   Resilience means being able to bounce back.  If we are in a bad place it can feel just too hard to get back up.   The spiral that drags us down to the depths of darkness is a bad place to be and it can feel just too hard to find a way to get back up.  We need a lot of strength that we often don’t have on our own to get on the road again to survival rather than staying in the pits.  Finding the right support, asking good friends for help, telling people how we feel can be the first step to being on the road to getting back on track.   To stay on track we may need to change something in our life that is not working well and find what it is that can make us happy and to try and do more of the things that work well in our life for us.  The more resilient we are the more we can face the challenges that come our way as parents of disabled children.

Sign up for updates as we will be looking at resilience

in more detail over the next few months

R is for Reliable.  Llife is pretty unpredictable as a parent, especially if we are parents of disabled children.  One minute everything is fine and the next minute something happens, goes wrong or changes.  Needing people around us who are reliable is important and having good friendships helps is on our roller coaster of life.  We really don’t have the capacity to have people around who are not going to be there for us.  Get rid of them.  Cross them off your Xmas card list.  Unpredictable people – don’t need them and they don’t do us any good.

R is for Resource(s) – “this is defined as a service or other asset used to produce goods and services that meet human needs and wants”. Assessments more often than not in these days of austerity is another way of reducing funding and cutting down on resources.  Cutting back on short breaks, school transport, wheelchair services, one to one support in schools, speech and language therapy, CAHMS services or even Direct Payments.   Cuts galore = less resources.   Our biggest resource is ourselves and each other!  We are the ones who make the decisions on our family’s life, we are our child’s best resource as we will be there to the bitter end and will do all we can to make sure that they stay happy, healthy and safe whatever happens in services and to professionals

R is for rules.  Teaching our kids rules protects them, gives them boundaries and makes them feel safe. Some of our kids find rules more difficult to follow, sometimes their impairment makes it hard for them to understand.  This can turn family lives upside down, and causes confusion and chaos.   Rules are much harder to install.  Understanding what is in our kids heads and how they think then helps us adapt our rules and we make adjustments to be more reasonable.  As our kids grow up they then make their own choices and develop a sense of being a rebel and chose to ignore our rules, to break or challenge them.   The foundations of growing up and understanding boundaries helps our young people make the decisions right for them which give them a sense of self-worth as they reach maturity.

R is for relationships.   They come and go.  Some stay around.  Men leave, friends leave, our kids often find it hard to develop relationships and make friends.  Our real friends are ones we cherish, that we know are there for us, that stick by us through the ups and downs of our life.

R is for Risk.   As parents we have a gift of being able to do a risk assessment in our heads.  If he/she does that then this could happen.  If he/she goes there then they need to do this before they leave.  We seem to automatically be working out the worst case scenario and then finding ways to avoid the risk.

For instance:

If we don’t have tea early then we are going to not have time to get everyone in the car, and if we don’t get in the car on time then we are going to arrive at parents’ evening late, and if we arrive late then we are going to miss our appointments, and then it looks bad.

Solution:

So, I am going to have to cook tea earlier than usual, feed everyone in plenty of time so that we are not rushing to get in the car, we will arrive on time and then see all the teachers at the assigned times.

Phew.

It’s much harder to do this as the kids grow up and become more independent.  Or for our disabled children and young people to have Personal Assistants, Teaching Assistants or respite care staff doing the things we would be doing.  But, we see the possibility of mistakes happening, or the things that may go wrong, and now have to avoid those risks, but sometimes we just have to let them happen and for others to sort it out, and to know that although we would have done it slightly differently it is OK as everyone is still safe and sound.

R is for Rush.  We rush around without having the time to catch our breath.  From the minute we wake up to the minute we go to sleep we tend to be dashing from one job to the next, from one appointment to the next, the school run, getting kids sorted, washing done, meals cooked, ironing, taking the bins out, or heaven forbid we have dogs too and are rushing to take them out.  We definitely need a bit of R and R time.

R is for Relax.  

  • Take a chill pill!
  • Put your feet up
  • Have a hot bath
  • Go for a walk
  • Meditate
  • Join a yoga class
  • Enjoy a glass of wine
  • Have a meal out
  • Laugh out loud with friends
  • Read a book that is not to do with disability
  • Switch off your phone
  • Go somewhere with no internet for a week!
  • Book a holiday
  • Enjoy your R n Rs

What do you do to relax?

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