Surgery and autism anyone?? Another newbie mum

[Sharley Bear]

Hi, I have a daughter who was recently put on the waiting list for surgery. She is 12 and needs full spine. She has 46 T and 35 L curve with a very pronounced twist and very large rib hump. This has happened since November last year. So 8 months. My daughter also has moderate-severe autism and severe anxiety. I don't know how long the wait will be and who will support us through recovery but it won't be anything like the process for a regular child. She needs heavy sedation for a minor injury or even a blood test and a general anesthetic for anything invasive. I'm worried about even getting her to the state where surgery takes place as we will need to ferry or fly. So many things to think about and fear. Any advice would be wonderful.

[Melster321]

Hello Sharley Bear,

I am a newbie myself, so I'm not particularly knowledgable about scoliosis, but I can offer my support from one mum to another.

First of all, I'm sorry that you are going through this, it's a tough journey. My daughter does not have autism, but I happen to work with kids and so have some appreciation of the additional challenges you face.

Does your daughter have case management services at all? Or does she receive services through the NDIS? If so, speaking with a Linker (or whatever the terminology is in your state) might be worthwhile to see what sort of support you can muster (for her and for you). Try to take life a day at a time and look after yourself.

All the best,

Mel.