butterfly minds

From grief to acceptance

Posted on: July 27, 2013

From grief to acceptance

@MumForAutism has very kindly allowed me to share this post from her blog

I read an autism article the other day. It was in one of our national newspapers and attracted a lot of heated discussion. One thread that caught my attention was a series of exchanges between people about the impact of learning about your child’s autism. The exchange went along the lines of a parent saying how sorry she was that another parent had received an autism diagnosis for their child. However the condolence was seen as insulting by another person who felt that saying sorry was a slur against autistic people.

I can understand this. I think no matter how well meaning someone may be, saying sorry can imply that autism is a bad thing to have. Of course, that depends on the severity of the autism. Some people can lead full and purposeful lives (not without difficulty of course) but for others it is a very disabling condition. In these circumstances, expressing sympathy to a family can be an attempt to offer support and friendship. It is rarely meant with malice though I can understand the unintended consequences at the use of such clumsy language.

However, the fact is that many parents go through an emotional period following their child’s diagnosis. I know I did. The realisation that my children had a lifelong condition led me to experience a wave of emotions as I adjusted to their diagnoses. You can read more about it here but essentially it was a time of letting go of my expectations of family life and embrace a whole new way of thinking and doing. It took a while to adjust but eventually I came to see what a wonderful family I had.

Nevertheless back then (5 years ago now) I did not expect to feel the way I did and neither was I prepared for it. Disability was not something I was familiar with. Except for my grandmother who suffered from alzheimers and my near life-changing car accident I knew little about disability. At the time disability was something that happened to someone else, notably an older someone else. It couldn’t possibly happen to us, right? Wrong, it did and when it happened I felt a sense of shock and sadness as I grappled with what it meant for my children.

I know a lot of people doubt that SEN parents can experience any sort of loss but this was how I felt, a very real experience that some say is akin to grief. It may sound strange to non-parents but the bond between parent and child is so entwined that whatever happens to our children we feel very acutely too. We love our children unconditionally and we want the best for them and we aspire for the best for them and when things happen that challenge those dreams we can sometimes feel a sense of loss. It’s the way it is; it is not a slur on autism or autistic people but a way of adjusting to a different life.

For me acknowledging my feelings has helped me to move to a better place when I can truly say “do you know what, this life I have been given is so much better than the one I dreamt of”. I have come to accept my children for who they are, not what I hoped they would be and in doing so I have learnt so much about the wonders of ASD.

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