CARING FOR A DISABLED CHILD - IMPLICATIONS FOR THE FAMILY
Having a disabled child affects everything and everyone; parents, other children and even extended family and friends who care about you.
When it’s going well, there can be enormous happiness; happiness at the little improvements you notice, happiness at seeing their brothers and sisters play with and enjoy spending time with their less able sibling; but at the same time, you can feel an underlying grief for what could have been.
But there is a deep downside too. There’s your ability to cope in a disaster, because when it feels like a disaster your response to being permanently 'on-call', - along with the physical and emotional demands, huge financial costs, and complexities of getting the child to appointments - are all affected.
And it can affect both parents in a relationship differently. The pressure can rip families apart.
Obviously, it depends on the severity of a child's condition and likely prognosis, but it’s normal for stress to be increased as exhaustion sets in. Getting childcare can be a problem, which makes sustaining a job difficult, and you may worry about other children in the family.
So, if you’re in this position, what can you do?
1. ASK FOR HELP: People are sometimes reluctant to offer help because they don’t think there’s anything they can do. But actually, if you ask them specifically, you’ll be surprised at what materialises. Make yourself known to everyone – child development centres, health visitors, charities, support groups – and take every bit of help you can.
2. PLAN YOUR BATTLES: Families in this situation seem to spend their whole time fighting for funding, getting a statement or whatever, which can be exhausting. Pick your external 'warrior' activities wisely.
3. LOOK AFTER YOURSELF: Oh dear! Easy to say, harder to do. This links back to your coping mechanism and it’s useful to recognise when life’s becoming a struggle. This might be something as simple as finding a way to meet a friend for coffee; which means getting somebody in to look after your child. But the main difficulty I encounter is giving yourself permission not to be there; to go out and have a nice time just for you.
4. COACHING: Sometimes I work with families who are just starting on the journey or I can arrive on the scene later – when things are getting difficult. Coaching is about improving your ability to cope, lowering stress and even helping relationships.
You’re walking a long road, learning how to do it more easily will change everything and everyone.
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