And also when Ryley is well again..But for now..just consider making a hammertime suit, or investing in a music vest, while listening to tv commercial music and typing on the new electric typewriter.
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 I just saw in my unpublished posts my thoughts about lockdown 1.0.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. ...
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. ...
I am currently reading a book called 'Strong Mothers, Strong Sons', which is written by Meg Meeker. This is the beginning of my journey towards understanding what I could be doing better when it comes to supporting Ryley with the teenage years (this should benefit Braeden too!).Of course there is nothing in this book so far that relates to teenagers with complex disabilities ie. if they can't talk. However, I do feel as though there is some useful content. My plan is to start sharing my findings, and hopefully, start the process of developing some practical guides for parents of teens with a disability. One thing I have been reminded of, is how easy it is for a mother to cause pain in her son's heart. While she (or I, such is the case), is busy focusing on how she is feeling about her son's behaviour , her son is slowly backing away because he doesn't feel as though she cares. I get this. It is so easy to make a young person's behaviour per...
Hearken! The sound of silence :)
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