From grief to acceptance

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.

Related Posts Plugin for WordPress, Blogger...
This entry was posted in Aspergers, Autism Spectrum Disorder, Disability, Parenting and tagged , , , . Bookmark the permalink.

4 Responses to From grief to acceptance

  1. Marc Gravell says:

    Indeed, it is very clasic to go through the familiar steps – denial (oh yes, so much denial) through to acceptance. For me, the most liberating and rewarding thing was when I spoke very openly and publicly about it (like yourself, on my blog). It was hugely rewarding both immediately, but also by getting lots of feedback from other people that the blog entry had helped them move forwards along their own path to acceptance.

  2. So glad you wrote this. We went through a period of adjustment too, which was very like a bereavement. There was a very real sense of loss, which I guess was the loss of the future we expected for our son. You would have to be made of stone not to have some expectations of what will happen to your children when you start out as parents! I think we had to go through this, even though, as you say, later on we adjusted, came to appreciate what we had, and gained a deeper sense of fulfilment from raising a son with Aspergers. I think now we would celebrate his difference, but we have had seven or eight years now to reach that position. As to what I would say to parents who had just had the diagnosis – well yes, I guess I would have to feel sympathy, and would probably struggle to find the words.

  3. I wish there was a magic bullet for parents! I started counselling again last week in the hope that it will help, because it’s not just me, it’s my other non-autistic kids who are affected too, they will also be stuck indoors on this glorious sunny day :(

    • Aspie in the family says:

      I’d be lying if I said everything was perfect here because whilst I’ve adjusted to autism my eldest daughter hasn’t. She resents missing out on things but I doubt this is just due to having autistic siblings but having friends who appear to have everything; holiday, clothes even cars. Her friends lives emphasise what she doen’t have which makes me pretty fed up as I just can’t provide these things. However, I have tried to encourage her to attend a siblings (of autistic childrens) group but she refuses to go. She is also a bit on the old side now (most of these groups are run for younger teenagers) but I do think some counselling/support would help her if she was more open to the idea. Besides that I’m not sure what more I can do besides helping her to get to university (her aim) and enjoying the independence that comes with that. Deb

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>