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Some things just never get easier

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 I just saw in my unpublished posts my thoughts about lockdown 1.0.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. ...
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Blogging 101-how do I do this again?

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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. ...
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On eating/feeding

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We have been working hard on helping Ryley start eating proper food again lately. He has basically lived on artificial formulas for the past 10 years. Not that this is a bad thing. It has helped him grow and enabled him to move his muscles better, so I am very grateful that this has even been an option for us. But it time to start moving away some more from the formulas. The first change was when he came off the Ketogenic Diet. This was a massive step for us. It had been our security blanket for a very long time. It all went smoothly though. Since then he has been having 3 PEG feeds a day and we have also given him food at each meal as well has snack time. This has gradually helped him remember what food tastes like and allowed him to experience different tastes and textures again. Today, I had this glorious remark to David when he got home from work: " Ugh. Boys just eat sooo much. Ryley has not stopped eating all day. Teenagers..."  When I think back to those e...
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