Dot - Interview 9

More about me...
Dot is a single mother who lives with her 15-year old son Joe. As a baby Joe had some developmental problems; he walked and talked late and was unresponsive to many sounds. When Joe started school he found it difficult to settle and concentrate. He didn’t sleep at night and would be completely tireless. Dot gave up work and had to sit with him in school to try to help him concentrate. Eventually a student teacher in the school suggested that he might be autistic and Dot took him to the GP who referred Joe for an assessment. After a nine month wait, Asperger syndrome was diagnosed.
Dot has found the general lack of awareness about Asperger syndrome very difficult. People have tried to give her advice without really understanding how her son understands the world. Once she had the diagnosis she celebrated as she thought she would be able to access the relevant services and support for Joe, but very little happened. Dot felt very isolated and decided to set up a support group for other families with children with Asperger syndrome. This has been a valuable source of support and information for Dot and has moved on to becoming campaign group to raise more awareness about Asperger syndrome.
Joe is now in a specialist Asperger syndrome unit attached to a mainstream school and is doing very well. He will be sitting his GCSE’s soon and Dot hopes that he will be able to enter the mainstream school to do his A Levels in the second year of the sixth form. He loves Pokemon and hopes to marry a rich woman who likes Pokemon too.
Joe thrives on routine and has set rituals to help him manage his days. He is very fearful of death and dying and has a set routine at bedtime to help him to lessen his anxieties at night time. He can only cope with one person at a time at home and is sensitive about food, buttons, labels, logos and so on.
It has been important for Dot to overcome her own expectations for her child and how she would have liked his childhood to be, and to understand the way in which Joe experiences the world. She has found talking to people about Asperger syndrome very useful, particularly people with Asperger syndrome and can now see many positive, good qualities in her son and people with AS.
Dot felt the diagnosis would make everyone take her seriously at last and when she got home...
Dot felt the diagnosis would make everyone take her seriously at last and when she got home...
Dots son hated being cuddled and was tireless at night.
Dots son hated being cuddled and was tireless at night.
Dot thought her son had hurt himself when a student teacher suggested she take him to the doctor.

Dot thought her son had hurt himself when a student teacher suggested she take him to the doctor.
Dot gives advice about the information she has found useful.
Dot gives advice about the information she has found useful.
Dots son did not want a clock in his room because each minute is one nearer his death.
Dots son did not want a clock in his room because each minute is one nearer his death.
Dots son has a complicated bedtime routine which, at one time, involved listening to Bohemian...
Dots son has a complicated bedtime routine which, at one time, involved listening to Bohemian...
Dot describes how she put an advert in a local paper asking if parents of children with AS wanted...
Dot describes how she put an advert in a local paper asking if parents of children with AS wanted...
Dot explains how the respite you may be given is not necessarily what you need and how it is not...
Dot explains how the respite you may be given is not necessarily what you need and how it is not...
Dot recounts an incident when her son was bullied in the mainstream school and how the teacher...

Dot recounts an incident when her son was bullied in the mainstream school and how the teacher...
Dot describes how having teachers who want to help are like gold and how little understanding...
Dot describes how having teachers who want to help are like gold and how little understanding...
All the legislation talks about partnership with schools, but a lot of teachers I spoke to saw it as interference. Partnership seemed to be if you agreed with what the teachers were saying but if you gave them work, if you like, if you said to them for example, “I want a home school book. I need to know what is happening in school. Is he learning anything? Have there been any incidents?” it’s another job. Now teachers who want to help you are like gold and you know, and Joe was lucky, he had a couple of teachers who were like that. But you are never safe because when they move the next year you don’t know what that teachers going to be like. Some people, some teaches have been trained for years, some teachers have been trained for a short time. You can’t go by that. It is attitude. It is will they work with you? Will they work with the child? It is not even class sizes because we have got people who … here it is rural, we have got people who are in very small village schools who still can’t get any help, even when they are small class sizes because basically they don’t like the behaviour of the child and they can’t see past the behaviour of the child.
Dot is happy with the Asperger unit her son attends.
