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.
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?…
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?).