This morning someone I tweet with introduced me in a tweet to a lovely lady who has a child with SWAN.
SWAN means Syndrome Without A Name. It means that any person without a known disability involving a chromosone defect is called SWAN, lumped together into one category. We don't know what is wrong so we will diagnose you as SWAN.
But what does it mean? How does it help?
I have a problem with SWAN and it is something I've experienced. In fact I don't just have an issue with the label SWAN I have an issue with the label Learning Difficulties also.
My step daughter has been labelled SWAN, she has learning difficulties, as does my youngest child who isn't SWAN.
My son is dyslexic, my step daughter has a chromosone defect, she is unable to toilet, communicate (verbally, PECS, sign language, make eye contact) she requires 24hr supervision, she is a danger to herself and to others, has no awareness of something being sharp or hot, she will react if she touches the hob, but she will do it again next time as she does not recognise that it will be hot and it will burn. She is unable to tell you if her tummy hurts, if she is happy or sad, she will cry or laugh for both situations, she is agressive but it is not intentional. She has no long term health problems.
So what is the benefit of her being diagnosed as SWAN? None as far as I see. My sons diagnosis of dyslexia means he will get appropriate support at school, dispensation during exams and if we lived in the UK, funding for his needs in school.
My step daughters learning difficulties are obvious, her funding is secure, she's unable to do anything, she does not require support, she needs it doing for her. This was pointed out after a funding review, where the carers were PC and said 'she needs support chosing what she wants to eat' she will eat what is put in front of her and everyone elses on the table, she will grab a lemon, bread, a raw potato and eat that, she cannot open a cupboard to grab a bag of crisps, in fact if you give her a bag of crisps, they make a lovely sensory noise until the bag bursts over the floor.
We have many friends with children with learning difficulties similar to the level of care my step daughter has and similar to my son in regards to the level of support required and the costs involved.
My back ground has been teaching and support with adults and children with learning difficulties to main stream adults and children with additonal support required for their learning and with people who want to train to work with people with learning difficulties.
I have been told by a few people that as I'm not the birth mother, I don't know what it is like feel so isolated from everyone else having such a profoundly disabled child, it was easy for me to pack her off aged 12 into residential care. And they are right, NO I DO NOT KNOW HOW IT FEELS. HOW COULD I?
But I do know this and I can share it with you. Having a child with any kind of difficulty is hard, having a child without a difficulty is just as hard.
I have been at both ends of the stick,
'Do you think it was any easier to pack a disabled child off to residential school, as the wife of her father, as mother to all our children?' Which school? funding? dealing with other peoples attitudes?
'Do you think it is easy to get a diagnosis for a child with dyslexia, navigating your way through a sytem that wants to throw you out at every step?'
'Do you think it was easy to move to South Africa and leave my 18yo son behind in the UK, he'd only left home 4 days before we were asked to move here?'
'Do you think it is easy on the other siblings to spend their lives being told, we can't go on holiday/to the theme park/have friends round/have a party for new year? as it's not fair on your sister, she'll not sleep/will pull someones hair/will take food off people's plates in the restaurant.'
Many of our friends haven't sent their children away, they've not judged us, they've just said they can't do it. Many have and regretted it, many have waited till their child was older and regretted not doing it earlier.
I've been involved in placements for children with difficulties, I've supported parents through the process, I've prepared children for the move, with visits and flash cards and journals made together. I've worked in family support, as a foster carer providing respite for families, I am a mum.
The one thing I can tell you is that giving a child a label makes little difference, few people without any knowledge of learning difficulties won't understand and even if you do have a child that falls into this category, it makes very little difference to how people respond to you.
I don't believe in giving labels because every child/adult I've ever met is different, they have different needs, they have different family backgrounds. We have 5 kids, they lived with us. I gave up work to look after my step daughter, it didn't help. She went into care, it was not a decision made lightly. We all benefitted.
She can sleep though noise now. So we had friends with their kids over when she was at home on the weekends. We had New Year Eves parties that she was part of. We took her on holiday because she could now sit in a car on longer journeys without trying to get out of her seat belt and crawl into the front. We could go out for meals as she stopped grabbing food off other peoples plates. We enjoy every second of the time spent with her and are sad when she goes home.
Being labelled as SWAN has made no difference to her life or to ours. What made a difference was just accepting her as she is, the limits on ours and her life. Accepting that so called friends who found it difficult being around her were not worthy of being our friends. Acceptance that aged 24 she wouldn't be living at home any more and we'd have had a whole different set of issues like each one of our 4 boys has provided us with. Acceptance that she is our only child who's future we don't have to worry about. Who doesn't miss or need us since moving to South Africa, but is pleased to see us when we go home to visit her, 4 times a year. (We see the other two children 5 times a year and tha's only because they are capable of flying out to visit us).
Every person is an individual, every family is unique. Each situation is affected differently. There is no 'severe' difficulty there is just how each difficulty impacts on the individual, the family, society to various degrees and how you you and everyone around cope with it.