When autism was just some word I’d heard once or twice.
When despite nursing a newborn I was younger, fresher and had bucket loads more energy than I do now.
When outings were simple and carefree. When all we had to worry about was had we enough nappies in the bag and was I wearing something with easy boob access.
When I loved babywearing, wandering around with Grayson snuggled up where I could smell his sweet baby smell and kiss his head.
If I knew then, what I know now I’d go back and cherish those simple days so much more.
I’d really take stock of just how lucky I was when I didn’t have to worry and lose sleep over delayed milestones, fecal smearing, the absolutely relentless frustration of non verbal, the loneliness, the cruelty of society, the struggles and the anguish of what was to come and the future, the big questions of who will care for him when we are too old and too weak, and worse long after we are gone.
It’s not all bad, it’s actually getting a lot easier now. The meltdowns much fewer. The general demeanour calmer, happier. School environment perfect, better understanding of sensory needs and triggers on our part. We have wills and life insurance and we are saving now and building security for both children’s futures. We have accepted that whilst one ISA will likely fund university tuition, a first car, a house deposit…the other may need to contribute to adult care needs. This word autism that was just some word, we know it now. My word, do we know it.
Age 3, that was the year of hell. That was the year I questioned if I’m up to this at all. The year I cried myself to sleep so many nights. Where I alienated myself from people, felt bitter and angry, when I grieved.
We are emerging now with a wonderful 5 year old from the other side of the most difficult, challenging time we have ever faced in our seven years of parenting.
It’s going to be OK.