As Christmas now really begins to draw near, and we think of the baby Jesus in the stable, today's page in the advent calendar is about what happens when parenthood takes a different pathway from what was expected. In the same way that Mary and Joseph's experience of parenthood was far from usual, so the account below makes us think of what challenges may be faced by parents of disabled children. In the end though, only one thing really matters.......
Finding out that your child is disabled is a bereavement, although in our case, our initial reaction was relief. After years of knowing something was wrong and being told our child would “grow out of it”, after years of having our parenting skills and home life called into question, we were vindicated. Then came the bereavement as we realised that many of the things we had hoped our child would do: live independently, go to university, have a good job, would never happen. Our child’s future became narrower and more limited and at the worst point, our greatest aspiration for our child was that they would not end up in prison.
Having a child with complex needs and behavioural issues is very isolating. They don’t really have friends and cannot manage to attend any activities for mainstream children. They don’t often get invited over for tea and never for sleep overs. This means that they spend all their time with their parents. Things get more isolating when they attend special school, as these schools do not have after-school clubs or holiday clubs and often finish as early as 2.15 pm. This limits how much parents can work and time and again we have found that as a parent of a disabled child it is assumed that you will not have a job. Special schools are often further away than the nearest mainstream school and although transport in generally provided, it means you never meet the parents of the other children.
Talking to the parents of other children becomes a challenge as the common ground begins to disappear. For example, we have sympathised with other parents over “I am disappointed with my daughter’s spelling test result”, while thinking “we just wish our child could write”. Some things begin to be just too shocking for some listeners such as “Our child has smashed up their wooden wardrobe with their head” and you begin to feel as if you live on another planet.
So how to cope? First and fore most has been the strength of our own relationship. Often in these situations, the parents’ relationship is the first casualty. The parents of other disabled children have been the greatest help, especially in signposting us to access benefits. Once children have specific diagnoses or are in receipt of specific benefits, they can access activities for disabled children. One thing leads to another, almost like going up levels of a video game, and eventually we were able to access care and respite. Then we have had the support of our families and friends and more recently a self-help group, where you do not shock, no matter how extreme an event gets described, as the group members are all living with similar problems.
So it has been the strength of the relationships we have formed, of love that has pulled us through.
It truly is the most powerful force in the universe and God is Love.
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