Blogging 101-how do I do this again?


Image result for write

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.


Comments

  1. Oliver JonesApril 22, 2018 at 12:00 PM


    Usually I do not learn article on blogs, but I wish to say that this write-up very compelled me to check out and do it! Your writing taste has been surprised me. Thank you, quite great post. gmail log in

    ReplyDelete
  2. UnknownJune 18, 2019 at 11:04 PM

    Hi there i would love to get in touch with you....my daughter who is now 21months old...has some incredible health issues and has a 3 megabase deletion of 4p.16.3
    We are booked to see a geneticist at the RCH in July....based on my research alone and everything she has endured to date indicates WHS
    I am in Ballarat Victoria and I'm pretty sure I read that you also are and I would love to talk with you further.
    I am on Facebook as
    STACY STEWART
    My email is s.l.stewart.1989@gmail.com
    And my phone number is
    0435676102
    Thank you so much.

    ReplyDelete

Post a Comment

Agree? Disagree? Love to hear your thoughts! Thanks for stopping by!

Popular posts from this blog

How about them shoes?

Image
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.single.night.  Why does this happen?…
Keep reading

The Dream

Image
I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans.

A quick recap for those who have forgotten:
The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school.
My worry has always been that as soon as he turns 18 years old he will have nothing to do.
Sure, we have 2 options here.
One is a day program type environment.
The other is like a sheltered workshop type environment.
Neither of which I feel will necessarily suit Ryley.
Of course things may change in 8 years time.
But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do.

I actually have very little faith in the system at the moment too.
I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for
(eg. Not changing someone's nappy for the whole day is just not friggin' on ok?).
I don&…
Keep reading

Is being strong, enough? Part 1

Image
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…
Keep reading