Being a swan is hard, living in a rural community adds its own problems to the mix.
We live in the North Cotswolds, an area of outstanding natural beauty covering several counties. When we wake up, it is to the sounds of sheep in the fields and birds singing in the garden. Sirens are only heard because we live 250 meters from a police station. As a place to live and bring up children, it is calm, relaxing and ideal. As a place to bring up a swan, it can be challenging.
As a Swan, The Moo is not simply a child who needs a little bit of extra help, she needs a lot. Her school is a 50 mile round trip a day, 45 minutes each way in a taxi. For a child who gets fatigued at school the addition of a long journey at the end of a day is never going to help.
If I have meetings at school and I can have a lot, I then travel in separately to The Moo. All therapies, Paediatrician appointments etc. are done in The Moo’s school to limit the impact on her BUT if I want to talk to the therapists I have to travel to the school. Therapists / teachers / social workers don’t leap at the chance to visit us at home, if they come to us, they looe at least half a day for an hour appointment, time they could be using for other families.
Training for us as a family is always held in urban centres, normally Gloucester, another 50 mile round trip.
From above, you can tell that we spend a lot of time (and money) in my car. I’m lucky in the fact that I drive and I have my own car, a lot of families in the North Cotswolds don’t. The Cotswolds is seen as an area full of wealthy, retired couples but in fact there are areas of extreme deprivation in almost every village. Transport, vital if you don’t have a car, was minimal before cost cutting and now … villages often only have one bus in and out a week and volunteer drivers need to be books weeks in advance.
I think that covers travel and hints at the issues with therapists and schooling. The other major problem is in getting training support as PAs and childcare. As there is no special school in our area, there are no TA training in supporting SLD children, peg fed children etc. TA’s often provide the majority of PA support therefore no PAs. Social services “suggest” advertising, employing and arranging training for your own PA, as obviously we have all the time and experience in the world. There is no “need” for the council to help as only one or two families need PAs in an area of 300 square miles.
Childcare is difficult enough for normal children but for a child with challenging behaviour, non-verbal and severe cognitive impairment it is impossible. Pre-school years maybe OK, Nurseries can often handle our children but after the age of 5 there is nothing. The same problem as PAs – no trained workforce.
The final issue with rural living with a swan is isolation. A much talked about but little understood word.
Isolation is banded about A LOT by professionals who talk about it but do nothing to help. We are isolated by lots of things. Silly little things, I don’t stand at school gates, talking to other mothers about our children. If I did (and I have) talk to other mothers about my child, I either stay silent as I am aware that what I think of as normal is far from normal in other people’s books or I say something, the room goes silent and I realise that I have said something shocking to them.
Support groups run in rural settings will have mainly parents of children in mainstream schools, those of us who’s children are more severe are often not understood even in support groups as our children’s needs are so different from “normal” children.
In the end we often stop talking about our issues and problems as they are too scary and too different for others to hear and help. We stay in our houses and rarely venture out, trips to see therapists, schools and meetings taking priority over trips out for fun. Trips out to local parks are a no no as little rural communities have no need to ensure that playground need the needs of SLD children. No one comes into our homes to help as no one is train up to help.
SWAN UK provides the only opportunity I have to meet others in our situation who can understand what we deal with and who don’t stare at my child.
I make sure that we go to Swan meets whenever we can, often planning weeks in advance. How can we get there as motorways are now on the banned list according to The Moo? Is there a café? as she will not eat anything which is not hot or rather not hot then cooled enough to be cold. Will she struggle with sensory issues at the place, will it be busy … It is the only time we leave the home for fun so well worth the planning.