When a child is born with a disability, it changes the dynamics of what is a ‘normal’ family life, when family life is centred around the child with a disability. It doesn't matter whether the child’s disability is mild, moderate or severe.
Disability dynamics and family life
Living with a child with a disability, although it can have a profound effect on the family, it can also become a unique shared positive experience, as long as the family see it that way. It's all down to attitude. If handled appropriately, a family living with a child with a disability can broaden a family’s horizons, increase family awareness of just how mentally and emotionally strong they are, and can encourage connections to outside groups that can help both the family and the child with the disability.
Sibling expectation
No matter the upbringing or how hands on or off the parents are, siblings with a sibling with a disability, should know what is expected of them just by their own observations – and over a period of time should also come to terms with their new way of life, to know that their lives are going to be different. While it's important for siblings to develop their own autonomy and decision-making skills, it is important for them to also have a sense of unity and shared responsibility.
Family attitudes matter
Raising any child can have far-reaching effects, the impact of which will likely depend on how the family cope around the wider family issues. Whilst parents may feel a sense of guilt, or somehow feel they are to blame, it should never stop them doing what's right to make their child’s life better.
I could not agree more with your thoughts in this blog.
A friend's son has grown up with a sibling with learning difficulties, but the family has been 100% inclusive and they are a wonderful close knit unit with huge amounts of respect and time for each other.
This is precisely how parents should address any disability in families, which unfortunately was the opposite of your experience.
As a parent, my view is also that the needs of a child should always come first.
Thanks. Yes, as you say not my experiences, it's hard for me to imagine just how satisfying that will have been.
My blog years in, has brought clarity on a life that I might never have got to know about. It's difficult for any child to think you might go to the grave not knowing. That thought did cross my mind a few times.
I still find it difficult to comprehend this was my life. I have achieved in spite of, but it doesn't make my experiences any easier.
Your final paragraph resonates and confirms what I know to be true. They missed out on the family unit being stronger, better and more supporting.