Posts

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 early years, …

Is being strong, enough? Part 1

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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 persona…

The Insurance Scheme

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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 awareness and 'fight&#…

Morning

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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 about it.
He is not fo…

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.

It's been a while.

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It most definitely has been a while. But as usual I am being slowly and gently guided into writing again. I will most likely not publish or open the blog just yet. In fact. I will probably not even continue here. I have started a new blog elsewhere. But I am not even sure if that is for me.
All I can hope is that the gentle guidance grows stronger. Because I miss writing. I miss expressing myself creatively in that form. I don't care who reads it. But I do feel as though there is space for my voice to be heard again.
And so.
It shall be.



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On the hard days, I wake at 5am. For a few moments, or, what feels like hours, there is a rush of anxious adrenalin racing through my body. It's as though I am running a marathon. I don't fight it. I lay there, allowing it to make its way through my body then find its way out again.
It is a tiring way to start the day.
Thankfully, these days happen infrequently and I can easily identify that I am stressed and that I need to take a break and clear my mind.
Usually, I just remind myself not to catastrophize anything and get on with it.
But ugh. It can be so annoying.

Lately, I have been getting these flashes of inspiration in my mind. Almost like a gentle whisper in my ear. Encouraging me to write. Write a book. Go on. You can do it.
So as a way to start, I am writing in my long forgotten and (currently) unpublished blog.
There is an awful lot I need to write about. This journey of mine hasn't finished yet.

I have been terribly emotionaly lately. Small things have hurt my he…