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 I just saw in my unpublished posts my thoughts about lockdown 1.0.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.  As expec

How about them shoes?

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

On eating/feeding

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

Is being strong, enough? Part 1

      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 pers

The Insurance Scheme

I have just had my first planning meeting, and let me list how I felt throughout: Nervous Confronted Sad Hopeful It started with another assessment that focused on the negatives. I must admit, it's been a while since I have had to be reminded of all the things Ryley can't do. And then of course there was there were questions like this: So, how often do you go out without your children? Once a week? More? Less? I am certain I pulled a face and laughed. Let's say once or twice a YEAR. If that. Oh hang on . Does that include work? No. Oh. I am hopeful though. I do feel as though Ryley will be allocated a fair chunk of funding. Which will mean he can move towards greater independence (and more time with peers and not his boring annoying parents). So I am excited for that. For long time readers of this blog, you will know that I lobbied for these changes to the disability support schemes. But I grew tired. Exhausted actually, with always have to raise awarene


The footsteps awaken me from my sleep. Suddenly, I feel a thud. Ryley pushes me until I move across and he proceeds to get into the bed with me. His Dad has left for work already. First, he looks out the window. Then, he pushes me some more. He wiggles his body awkwardly and attempts to pull the covers over himself. And then I hear him grinding his teeth. He pulls his top and makes the sound that he repeats all the time when he wants something. I turn over and tell him it isn't time to get up yet. At those words he kicks all of the covers off the bed. I am slightly annoyed now (and cold). "Ryley, it is not time to get up yet" I pull the covers back over us. He grinds his teeth. Repeats the sound. Pulls at his top. It is 6:30am. I manage to keep him in bed until 6:45am. Time to get up. I move out of the bed and he starts to cry as though in a panic and grabs my top. "Ryley, it's time to get up!" I tell him, in an attempt to seem happy

Blogging 101-how do I do this again?

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.