OK with not being OK

I have never really been comfortable using the word ‘grief’ when referring to my son’s autism. Especially in the early days. On Diagnosis Day, the Health Visitor (whos involvement and support afterwards was virtually non existent) said to us ‘You will need time to grieve’. It was one of those inappropriate and damaging things that people have said to me on my journey, that will be etched on my heart for ever (but not in a good way). That is, along with other faux pas casually dropped into conversation by others, family and friends included. NB You have to be careful what you say to us Special Parents, we have great memories. My tongue is firmly in my cheek at this point, but you get my drift.

How could I possibly grieve for my beautiful, physically perfect three and a half year old, who was very much alive and well? It made me feel physically sick. It was clearly something she had read in a textbook or been taught on a course. Totally the wrong thing so say to me at this point.

Ten years down the line, I do see that there IS a grieving process, a sense of loss for the child that could have been, life you could have had, yadda yadda. But personally, I prefer not to dwell on this idea. Well, I try not to. For me, it’s like dwelling on the fact that I don’t look like a Super Model or have a natural aptitude for maths. You know, things you can’t change. It is what it is.

With a disability like autism, you are constantly battling with the ups and downs of the condition (which has been the main point of most of my previous posts). Loving and caring for a child that can display behaviour that is both devine and monstrous, often changing from minute to minute, due to his condition and through no fault of his own. But the intense love that you have for him usually pulls you through, well on most occasions anyway!

This bizarre juxtaposition of feelings and emotions was perfectly summed up by a friend in the same situation as me. She told me she was at the stage where she was ‘OK with not being OK’ about his autism. I totally agree. Who would ever be OK with it? Why would you? I’m pretty much at that stage too. That’s not to say we don’t love the bones of our boys. That goes without saying. Always.

But no grief for me, because my wonderful son is very much alive and kicking. Although he’s snoring away very contentedly right now ❤

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