L: A to Z of Family Lives and Rights
We continue with the letter L of our A to Z of Family Rights and Lives. Again, thanks to those of you who contribute each time we ask for suggestions.
Labels: Severe, profound, moderate, PMLD, ADHD, CP, ASD, LD, on the autistic spectrum, challenging behaviour, complex, LD, undiagnosed, special education needs, additional needs, non-speaking, epileptic, non-verbal, the list goes on and on.
Where is the child behind all the labels? Disability labels focus on what children can’t do, not on what they can do. They are part of the medical model of disability and not the social model. This can push well-meaning family members and teachers to lower their expectations of a child once they are labeled with a disability.
Parents often get labels too – neurotic, challenging, hard to engage, bolshy, etc. Practitioners will gain labels from families too – jobsworth, uncaring, unreliable, untrustworthy, etc
All of these labels can lead to difficult relationships built on assumptions. The one thing labels never help us to get to is a positive outcome.
Laughter: the best therapy. Something we should all put as a New Year’s Resolution – laugh more. Find time for laughter. Find time to sit back and watch that comedian you like on the TV, to sit and listen to the kids (often really bad) jokes; learn to laugh at the silly things that may otherwise drive you mad, and to shrug your shoulders at that huge pile of ironing, smile and laugh out loud.
LB Bill: This is a campaign “to promote disabled people’s right to live in their community and to make it harder for the state to force disabled people into residential care or treatment“. The campaign are keen for people to be able to publicly show their support for the principles of the LB Bill. If you support the principles, please pledge your support
Legislation: So much legislation. So many Acts and guidance out there supposedly to ensure that the every day cr*p we encounter doesn’t happen. The legislation may be adequate in some aspects but the accountability for complying with the legislation is not.
Level headed: Being level headed helps us think better and to get the best for our kids. It makes for better relationships with friends and those we love. It helps us be more in control at meetings and those god damn awful appointments. Inside when we are feeling tense and our stomach is churning with anger, breath, count to 10, 20 or 100 if needed, and phew, relax.
Lie in Oh don’t you just feel like snuggling into the duvet, rolling back into a ball, making a nest in the mattress and turning over and going back to sleep. After all it is Sunday. But no, instead one of the kids is yelling from the bathroom; the dogs have got out of the utility and have leapt onto the bed and are giving your face a wash; the phone is ringing downstairs and you can hear shrieks and arguments in another room.
Life – We rarely have time to breathe or put our feet up but making the most of life and the little things that mean a lot will be the memories that will stay with us forever. Life is too short and those of us who have children and young people with medical needs may well have experiences losing someone we love, or coming close to seeing our child seriously ill. We never take life for granted – life is precious.
Purposeful lives are what we want for our children. A life that is worth living. A life filled with hope, aspirations and optimism.
Lip service When you know you have not been listened to or when decisions have been made around the table that you have been at but you have no idea how they were made or reached. Lip Service feels the same as the tick box. It feels like you may as well not have bothered going in the first place. The tokenistic parent enables the poor pactitioner to say they have consulted but actually they would have made those decisions even if you had not been there.
Listen: Don’t talk at us and don’t say you want to consult when you don’t actually take the time to listen. Let us tell you our stories and our experiences and learn from us. We know our kids best and as they grow up, you should also take the time to listen to their views and how they communicate. Listen, watch, observe and make no assumptions. Act on what we actually we say (rather than what you expect or want to hear us say) and we will work with you to get the best together for our kids.
Love makes the world go round. We love our kids to the ends of the universe and back. They can drive us up the wall – test our patience no end but when it comes down to it our love is so strong that it drives us to fight the fight and get the best that we can possibly can for our kids. Love conquers all. It bonds brothers and sisters together. It holds the family strong.
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.