Category Archives: Uncategorized

What about the ‘Real World’? What does this mean? Whose worlds are the same as anybody else’s? So why is this said about our children all the time? Don’t we create our own lives with kindness and happiness? I don’t mind what our child does as long as she has these..

Those same old questions.. By family or friends who don’t understand. The ‘professionals’ who have immovable markers of ‘success’ for our children.They don’t know what to say.Our journeys with our children can highlight the inflexibility of the systems of support who need to measure and evaluate them. This isn’t helpful. We lose friendships or moveContinue reading “We Change..”

It’s okay, I can fill out another form and write my name, address and date of birth AGAIN. Sure, I’ll tell you everything over the phone for the third time in a month because even though it’s a bad story, I’ve said it so many times now it’s more like a script anyway. Yep, I’llContinue reading “Happy Place..”

When I am sat in a room of ‘professionals’ and my child is not supported and my concerns about this are reported as ‘mums concerned/anxious’ you have not seen me as an equal. You have not listened to me. You have not heard me. So please..

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What do we become?A waffling sentence of abbreviations and fragmented sentences.Most of the time we just keep quiet. We have so much to say but we keep it to ourselves.Other times we just have to get it off our chest, we need to share the maddening systems we are dealing with, that terrible week ofContinue reading “The Bore..”

“Have you tried a visual timetable?”Sometimes you just want to talk about how it really is but it is always about a solution, it is always about fixing.I just wanted to talk about how lonely and worried I felt that holiday but apparently all of life is fixable and it is usually involves a whiteboardContinue reading ““Have you tried a visual timetable?””

So what do we become? “They are fine””Try not to worry so much””They need to learn about the real world””Just tell them they have to”What was the point of diagnosis when our children had to be like everyone else?

I don’t know what one week or day of ‘awareness’ will bring. I know that our children are meant to fit a system until they break. I know getting support nearly broke us all. I know there must be a better way.