A Blog About a Bloke-Living with WHS

Here we are at Thursday again. Haven't been many posts between Thursdays now has there? I have been waaay too busy, and without the thought of breaking a NaBloPoMo promise, I just haven't been motivated to turn that computer on at night. Anyhoo. It is TMAT. So what should I write about today? Seeing as it is Christmas soon (did anyone forget that??), I think I will write out MY letter to Santa. It goes a bit like this: Dear Santa, First of all, I have been pretty good this year, so you really need to bring me what I want, ok? I have quite a few things that I want, and I don't think I am asking too much. First of all, I would like a million dollars. (That's really not that unreasonable). For Ryley:  I would like all of Ryley's seizures to disappear please. We are now on a ratio of 3:1 on the Ketogenic Diet and don't have quite as much room to play with that as before. So can ya help him grow a bit more and those seizures to just go bury themselv...

For today's post, I am going to cheat a little and just point you in the direction of a great new blog. Most of my long-term readers will know I work for a disability agency called Pinarc. We are moving with the times and now have a great new blog up and running. You can find it here: PINARC SUPPORT SERVICES BLOG The post over there today has been written by some adults living in a CRU. Pretty sobering reading really. They raise some great points. I personally have a lot of trouble thinking too much about the future. I mean, Ryley isn't even 9 yet. But the reality is that someday soon, I am going to have to think about it all. And that scares me. When he turns 18, I am not longer his parent, I have to become his legal guardian or something just so I can continue to make his decisions for him and have a say in what happens. I can't even imagine at this point of my life NOT having full control over his wellbeing. He can indicate to me and David what his needs are, b...

                                                 Setting Goals...huh? Today's post comes courtesy of my day-long team planning day at work today. Something we discussed in length was the setting of goals, and how on earth should this be done. It is more complex than you think. I can clearly remember therapists asking me when they first came out to meet me and Ryley that question that I couldn't seem to answer "So, what are your goals"or "What are you wanting me to help you with?". I used to stammer and stutter and say "Um..I'm not really sure". What I felt like saying was: "Can you please just tell me what I need to do so that he can start reaching his milestones and appear to be a normal boy?". It always embarrassed me that I couldn't gi...

So this is going to be my new weekly blog post that you can be guaranteed to get. It will be all about the wonderful and sometimes challenging world of disability. I will warn you: There may be venting and there may be times I am up on my soapbox.  There may also be times when I am writing about how life just doesn't get any better. Do you have something you might like me to write about? You can email me, or send it through the Formspring link. Or you can just comment at the bottom of this post. My first post next week will be: "Labels, Diagnosis and what next?"