Sora

Age: 14
Duplication: 46, XX,+der(4)t(4;22)(q11;q11) pat, -22.
Lives in: Melbourne, Australia 

Sora's strengths are her alertness, interest and engagement in the world around her. She often surprises us by remembering details about people, things and places. Her main challenge is expressing herself as she is non-verbal (except for 2-3 words). She uses sign language and has about 20 Makaton signs to express herself, combining 2 or maybe even 3 signs for a simple sentence. She also uses a PODD (pragmatic organisational dynamic display) book. A PODD book is more complex and flexible than the PECS (picture exchange system) but is based on similar kinds of images. She has very good receptive language though and understands most of what we say to her. 

Gabby and Sora. 4p+ friends meeting at 11 months old.

Her health has always been relatively good although she did have problems with episodic croup throughout her childhood. This settled when she was about 10 or 11. She was 7 when she had her first tonic clonic seizure. She has had three major seizures over the years but she only has had nocturnal seizures which occur in the early stages of sleep. Her EEG showed something called Rolandic spikes which is consistent with nocturnal seizures. Since she has been on medication, she has not had any of these episodes. She is short for her age, but her weight is normal.

Sora at 3

She is active and mobile, but tires easily. She loves to go to the beach and to chase birds, and to ride trains and trams around town. She also loves any kind of arts and crafts. She has a short attention span and sometimes needs prompting to finish a task at school (she attends a special development school). Our main challenge is teaching her patience!

Sora signing 'bird'.