The highlight of the year for Rett parents has been the visit of Susan Norwell to the Conference in May and the opportunity for parents to take their daughters for a one on one consultation with Susan after the conference.

Dugald had been impressed with Susan's session at the International Rett Conference in Chicago and had asked if she would be interested in coming to New Zealand. With great dedication Dugald kept in touch with Susan and organized her flights and itinerary while she was in New Zealand.

Susan stayed with Christine and Dugald and met Mandy.

Susan's talk at the conference enabled parents to know that their intuitive observations of the girl's eye pointing for choice was right.

She reiterated not to put the blame on the girls, it is the ataxia which makes it difficult for them to respond quickly and we must wait for their response for meaningful communication.

Susan discussed APRAXIA - here is a definition

Apraxia is a disorder caused by damage to specific areas of the cerebrum, characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning which may be acquired or developmental, but may not be caused by in coordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series)

Susan said that the relationship with the girls is the main aspect of meaningful communication and learning will follow. Children's feelings get bound up in behaviour and we limit their choices by giving a stream of instructions instead of waiting for a response to each instruction.

There are a number of devices which help the girls to make decisions and some girls are happy to eye point to the "pop talk" on paper. Susan has sent some of these that can be photocopied and laminated and used on a day to day basis. These pop talks are on the website.

Michelle's speech therapist has put these in a folder for Michelle who delights in eye pointing to the answer she wishes to give. Many of these images have a lot of humour in them and I have noticed that many of the girls have such a good sense of humour. It must be a release from their frail bodies.

Susan said it is important for language development to give choices and while reading a story to have a range of symbols for the girls to express their comments by eye pointing or hand pointing if the girls have control of their hands Choose books with clear pictures and a slow story for a start to allow expression.

Usually when the girls look away it means "no way", remember to give time for a reaction as there is breath holding and handwringing which takes time to execute before the answer.

You can use prompts about the conversation you had to get back to it.

Reinforce YES looking at you, NO looking away. Exaggerate your body movement.

You can use this in conjunction with reading a book as each page is a framework for conversation.

From the single message you can proceed to the grids with more choice and step by step choices from 3-4 and then 4-6 and 6-8 choices.

Susan has said she would be happy to come back to New Zealand and Dugald said he is very happy to arrange this return visit.