I have logged back in to write today as we come to the end of lockdown 3.0. I just saw in my unpublished posts my thoughts about lockdown 1.0. Hmmm. I might publish that one day! Today's topic feels like something I have written about before. Over the past few weeks, Ryley has been undergoing assessments. These assessments are necessary in order for us to receive adequate funding under the NDIS. Long story short, Ryley's last NDIS plan has failed to provide the funding he needs in order to participate fully in the things we had planned for his transition out of school. The whole process has felt a bit messy. It started with me not being listened to. This is despite my strong, knowledgeable-of-systems-and guidelines voice. No blaming or shaming here. It just is as it is. However, for those that know me well, know that when you try and 'quieten' my voice, I will only speak louder. Especially when it comes to advocating and speaking for those that can't. As expec
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For sale: Two pair of shoes. Come and try them. You will probably give them back after 5 minutes. But please. Come and try them for a moment. Here’s what you get when you step into our shoes: We have a 16 year old son who does not sleep. By this, I don’t mean, he wakes once or twice to go to the toilet or get a drink. I don’t mean he stays up all hours on his device chatting to his mates or girlfriend. By this, I mean, he literally gets up every 15 minutes to wander around the house. Sometimes he will go back to sleep for 30 minutes. Occasionally it is a full 60 minutes before he gets up again. My husband and I take it turns to redirect him back to bed or to listen as he wanders around. We listen to make sure he doesn’t go outside into the freezing cold, where, if we didn’t notice, he would probably die. We listen to make sure he doesn’t go into his younger brother’s room to wake him up . This doesn’t just happen once in a blue moon. This happens every.singl
Sometimes I wander back into this blog and check out a few of my past posts. I read some of the wonderful blogs I used to follow regularly and contemplate writing here again. So many things have changed in my life over the past few years. The teenage years are...difficult. I feel very alone in this raising a teenage boy with WHS thing. There is no one really to answer my questions, and I spend most of my days feeling as though my son hates me. I know he doesn't, but this is tough. Way tougher than I thought it would be. So here I am. Tracking my journey again. It may help others. It may help me. But I feel as though there is so little support out there for parents who have teenagers with WHS...or any other disability for that matter. I feel compelled to write. So, I will eventually update this blog so it looks a bit fancier and with the times again (ha!). But this is me. Raw. Unedited. Changed.