When we first received a diagnosis for Joe, to be honest, I was feeling a lot of grief. I needed relief from this pain. I needed to know that everything was going to be ok. I needed to feel hope when my world fell to pieces. Only another parent who’s been through this understands that feeling of being completely disempowered and disorientated. You’d spend whatever anyone told you to and go to any lengths at this point as long as you had something or someone to guide your way through the forest.
As I searched, I found there was a lot of information out there…. but sifting through it all I ran the risk of being shot down 100 more times and didn’t know if I’d ever get back up again. A lot of it was written by professionals and continued to tell me over and over again what the PROBLEM was with my child and how they needed to be ‘fixed’ as such. Where was the beauty? Where is the uniqueness? Where is JOE in amongst all this? Tell me HOW to reach him, not that scary visual portrayal that is seen on so many ASD sights where a child is trapped behind a door trying to get out. Visions like that… Did they really think about how seeing those things makes a parent feel? Scares you out of your wits. It did for me anyway.
So, here, in my corner of the world, I’d like to share hope. I want parents who will do anything for their child to know there are LOADS of things you can do in your own home that will reach your child and for the bonds of a relationship. My son calls me mum now. He hugs me. He looks me in the eye – a lot now- and smiles at me. He looks to me now for comfort. 14 months ago I would have dreamed of these things.
It’s so easy to be disempowered by the fear around the ‘A’ word. The only thing a diagnosis helps with is for the professionals to box up his condition so it fits nearly on a piece of paper so we can ‘technically’ get some extra support from the government. Don’t get me wrong, I’m immensely grateful for the support I have received so far, financially it’s got us of the blocks at least. 1 x 1/2hr appointment with a specialist per week is what it can buy us. But what about the other 60+ hours of the week? It’s me. Little old me. And his father and grandparents. But ultimately am his everything because I’m his primary carer. BUT I’m creative, I’m resourceful and I have a LOT of common sense, which seems to be sorely lacking in some aspects these days. I needed to find my faith in myself and my OWN ideas, not be knocked down before I even start. Coupled with other things I’ve learned and been shown, my son is starting to play with me now. And laugh. We’re in this together, all of us. Let’s empower each other as parents of these gifted, unique and sensitive souls. Let’s share ideas, spread empowerment to each other and know that after every storm there will always be light. Hold the beacon for your child. We may not always get it perfect , but love isn’t about perfection or fixing. It’s about acceptance.