F: A to Z of Family Rights and Lives
We continue with our A to Z of Family Rights. A big thanks to all of those who joined in with suggestions on our Facebook Group.
Facebook: Many of us connect, make friends, get our peer support, overcome isolation, find solutions, learn and share information on Facebook. Where we would be without it?! One parent said “I can’t leave the house, childcare is a distant memory so Facebook has become my social life.”
There are so many groups on Facebook offering advice, support and sharing information. Don’t forget to join us in one of our groups – Bringing Us Together (general) or Person Centred Please, we also have a page if you don’t like groups.
Family The definition of family is “a basic social unit consisting of parents and their children, considered as a group, whether dwelling together or not (traditional family)” and “a social unit consisting of one or more adults together with their children they care for (a single parent family)”
We may bicker and argue, the kids may wind you up. There may be fights going on around us and we are tearing our hair out. But, where would we be without them? When it works well family time is the best! Being together, sharing, laughter, tears, comfort – it is our real wealth and our number one priority. Family life and being a parent of a disabled child/young person changes things enormously and takes us another road. Togetherness is our foundations and this helps us to build our children’s resilience.
Fear: The fear of not being heard, the fear of being judged inadequate, the fear of making the wrong decision, the fear of being asked to make an informed choice when you are not informed. The fear of medical emergencies, the fear of inexperienced medical care, the fear of being seen as the neurotic or pushy parent, the fear of what will happen when you are not here to fight your child’s battle. We live in a world of fear and this is something that needs to change. We need to feel empowered to speak up without fear of judgement.
Fight: We fight against each other and other family members, and we fight against services. We have words like battles in our daily vocabulary. It is hard work and causes us pain. Working together is easier but our anger often gets in the way, and services feel inadequate, professionals feel they are too useless to do their job properly whilst the anger and resentment builds up inside us and can cause us immense stress and fatigue.
|How do you deal with this? Do you choose your battles? Do you get overwhelmed and hibernate? Do you have a go to person? What would be your top tip for another family?
Foster parents – are people, other than a child’s parents, who give a child a safe place to live and grow. Foster parents take children into their homes and take care of them for as long as they need. Together, they become a foster family. The word “foster” means to help someone (or something) grow and develop. It also means to take care of someone’s needs.
Have you had experience of foster respite care? Is it something you would recommend?
Freedom: “It is being able to look at the world with hope and accept love from anyone or give love to anyone without fear”. Freedom is letting go of our past and restoring faith with one another, enjoying the simple pleasures in life, not being restrained, to speak out and have the right to say what you think and feel. It is having human dignity, feeling a fully-fledged human being, owning your own home, getting an education, feeling like a full and equal member of society, being responsible for one another.
“Freedom is never, voluntary given by the oppressor – it must be demanded by the oppressed”
Martin Luther King.
We can never take it for granted and so many never have it. The BBC put together a video about Freedom and what it looked like to individuals. Have a look when you get chance.
Friendship: Friendship is about loyalty, being there, kindness, support, laughter, celebrating, honesty, forgiveness, love, trust and respect. Sometimes in our world of disability we may chose friends who are going through similar experiences to us and have disabled children. Sometimes, we find that too consuming and occasionally it can feel competitive. Having a true circle of friends helps so many families go beyond merely coping and existing.
“One of the most beautiful qualities of true friendship is to understand and to be understood.”
Lucius Annaeus Seneca
F* it!: How many times a day or week do you have a good rant and a swear? It may be about the social worker, the GP, school, or partner! Just when things get too much sometimes there is no other word for it!
F**in Broken Promises: they said they would come up with the goods and they didn’t. You waited too long for something that never happened. You are still waiting. Let down again. Sometimes we just want honesty, and even admitting to us that it can’t be done, and why, is better than feeling dumped and duped.
Fun: This is the best. We need more of it. When we have travelled around the country and asked parents what they would like as their number one thing they tell us it is FUN.
Families want:
To laugh instead of crying,
To tell a joke instead of having a rant,
To go on days out and holidays instead of doing the housework.
To fill the air with laughter, it’s the best medication.
Future: It is something we can plan for but we live with an uncertainty as to if things will happen or work out that way. We all want a happy future for our disabled children and for some of us it is hard to think about what that looks like. Many of us fear for the future and are scared of dying before our disabled children and are frightened of what will happen to them in the future if we are not around. Some of us have sick children and every day is a bonus without us thinking too much into the future.
How often do you fear the future? How are you planning for your child’s future?
Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.
