TOTS 100 - UK Parent Blogs

Monday, 22 October 2012

Brainwave Initial Assessment

I've got a letter this week from Brainwave letting me that B is on the waiting list for an initial assessment in 2013. I can't wait for this opportunity as Brainwave have come highly recommended. More waiting. They are temporarily suspending initial assessments due to a recruitment programme.

Wednesday, 11 April 2012

More genetic results

Today I get a letter from Children's Medical Services with the results of B's latest chromosomal analysis. It's reported as 'normal'. He does not have Prader-Willi syndrome. So his excessive demand for food is more related to his behaviour and global developmental delay.

Yet another condition he does not have. The list of things he doesn't have grows longer. The frustration is overpowering.

Thursday, 9 February 2012

Joint social communication clinic

I got a letter today saying that following the recent ESP meeting, B is on the waiting list to be seen at the Joint Social communication clinic. They want to check B for autism. I'm not convinced he is autistic. Whilst he demonstrates traits similar to autism, he does not tick all the boxes for autism and shows many signs that are not typical of autism. He is sociable, makes eye contact and has high sensory needs.