Having a grandchild on the autism spectrum

Janet: Interview 01

Age at interview: 65

Brief outline: Janet has several grandchildren. She talks about her 8 year old grandson, L and her 6 year old granddaughter G both of whom have autism.

Background: Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

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Janet and her husband are very involved with their two grandchildren with ASD, Louis and Georgia. Janet wants to help her daughter and son-in-law as much as she can and sees her role as that of helper and supporter. 
She was ‘devastated’ when her two grandchildren were diagnosed, but she tries hard to stay positive. She loves both grandchildren very much and wants to do as much as she can do to help. She says that her daughter and son-in-law manage really well but do get very tired as neither child sleeps well. Her and her husband often look after the children at weekends and evenings so her daughter and her husband can spend some time together. Janet and her husband usually go on holidays with her daughter’s family.
Janet has L and G to stay regularly, and makes sure they have plenty to do. She takes them riding, to indoor playgrounds and country parks. She has developed a thick skin to cope with other people passing judgement on her grandchildren’s behaviour. Janet and her husband go to several support groups and feel they know a lot about autism. Janet believes that autism runs in their family and feels that several family members are probably somewhere on the autism spectrum. 
Janet was offered support from her grandchildren’s specialist paediatrician, but feels that other doctors, particularly those working in A & E departments, should have more training about autism. 
L and G both attend ‘absolutely brilliant’ special schools. G doesn’t have any language yet and doesn’t enjoy physical contact including being cuddled if she’s hurt herself, or hugging when it’s time to say goodbye. L is getting more communicative and Janet feels happy when she sees him playing with other children his age.
The most challenging aspects of looking after L and G are coping with toilet training, and getting them to eat at mealtimes. Sometimes Janet worries that they haven’t eaten enough proper food in the day. 
We also spoke to her daughter, Amanda, who is the children’s mother (see Amanda’s story).


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