Even with a volunteer support person online, a tired grandmother at the house to mind the sick baby, my son at preschool and 2 months of preparation.. it was still a 4 hour meeting. We are not done, reconvening next week to go through another two more goals, social and cognitive. Also need to do a long detailed skills based questionnaire called a Pedi-cat, it looks at developmental delay in a functional assessment. eg Can your son open a bag of chip? no. Can your son choose his favourite bag of chips? no.
I think I cried a few times at how awful it is that parents have to sit there and discuss in detail every part of the difficulty of their life. the impact. the future. the strain. the reality. then say it again and again and again.
This isnt what I thought parenthood would look like. This isnt what its supposed to feel like. My heart aches. I wish he could tell me. I hope this scrutiny of his life gets less important. I want to say I hope it ends, but something is punching me in the gut everyday telling me this isnt going to end anytime soon. He’s not going to catch up. I dont know anything anymore.
NDIS planning meeting part 2…to be continued.
A Journey to Joy 