It's 2:30am this time ...... another wet bed and a sleepless night. She's gone downstairs to the "big DVD" ..... while I contemplate the surgery that is to happen in a few hours.
I feel like having a coffee but that's not allowed at this stage.
I've set myself up so that I can continue this blog one handed for a while .... I have a holder for the iPhone so that I can function with the left hand. (Sorry .... you don't get a break from my ramblings!) I don't really have a clear idea of what I will be able to do for the next few days / weeks ... but there are things which must be done so I'll have to work it out!
Remember I told you of a play-date that Kaylia had with a friend over the school holidays? ..... I'd commented on my reaction to being able to hold a real conversation with the friend ..... I had a similar experience on the weekend ..... talking to another young child. These are the times I find hard ... Kaylia struggles to communicate the basic things that she needs to .... to form the words needed for a conversation about abstract concepts is just too hard at present. I think the thoughts are there at times .... but she cannot express them. She is trapped within herself.
If she could write the words? .... That would be great! .... but the stimming is like having your legs tied in a running race .... my concept is that for a child to learn skills (such as writing) to the level that they can express abstract thoughts, they need to have undisturbed, quiet thinking time. I think that Kaylia never gets the chance! I think for her it's like the difference between lying on a towel on a a calm sunny day ... versus standing outside in a loud thunderstorm! She is constantly assaulted by internal noise, distraction, disruption .... she never gets a chance to calmly think about the wiggly shapes on paper can actually mean something .... or how you need to hold the pencil just so ....
This is what I hope the Risperdal helps her with. Unfortunately it only makes about a 25% difference ... Kaylia still has a huge battle every moment of the day.
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