Oh yes, I am so there. My son is almost 20 and the days and years just drain you. As you said, I love him dearly, but I don’t want him to be autistic and I don’t want to be an autism mum anymore. I want the joy of a 19 year old boy who has just left school and is beginning his journey as an adult, not one who is still like a small child. I am sick of people talking about autism being ‘just a different way of looking at the world’. Fine for those who are aspergers, and high functioning ones, but not for those lower down the spectrum. He cannot live a full independent life; that is not another way of looking at the world, that is a disability. It is just totally heart breaking, and we should be allowed to say it. Not admitting it is just hiding a secret and pretending everything is fine. We need to be honest. Sure, some days are good, but some are just horrible.
The following post is a repost from another blogger.
The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.
I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.
I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the…
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Eirene Hogan 