Portraits » Alia and Adam

28 year-old Alia lives in a suburban house east of Toronto with her parents sharing in her care. She has two older brothers one of whom is married and has two kids. Both of Indian and Pakistani origin, the parents immigrated to Canada in the 1970s. Alia and her brothers were born in Toronto. Adam is a CMA and is working as an auditor. His wife has a BA from back home, has never worked and does not drive.

After Alia finished school, they did pursue a program at Variety Village for her. This was difficult to continue because her mother does not drive and one support worker could not support her alone with swimming, etc.

Adam recalls that everything was normal at the time of Alia’s birth. Adam and his wife got worried when Alia was not talking or crawling at 18 months.

Doctors ran tests and diagnosed her with Frontal Atrophy due to lack of oxygen to the brain at some point, which caused brain damage. Some of Alia’s symptoms are similar to Rett Syndrome, but others are not. Alia began having seizures at about age 8 or 10. She does not speak or walk. She has to be in a wheelchair. She continues to have seizures, which can last from 5 to 50 minutes. Alia is a puzzle to doctors.

Adam and his wife feel that Alia does understand things. Even though she cannot express her thoughts, she does smile in response. She enjoys social interaction. She is very happy when their grandchildren visit. She does not like to be alone because she gets scared and this can trigger seizures. Adam says that it is a team effort to take care of Alia. Both he and his wife have to lift her. He says that good support workers are hard to find. He worries that if something happens to one of them, the other cannot manage alone.

Adam works in the Muslim community. He also volunteers with many organizations and is involved in political circles. He feels the Muslim community is not organized yet to offer programs and services. The family accesses caregiver services from mainstream agencies. However, he is concerned that the standards acceptable in the mainstream are not acceptable to them as Muslim. For example, they do not want male attendants assisting Alia with personal care and will require gender-specific care for her in a residential setting. He is unsure about service providers being sensitive to this requirement. 

Although their sons are very involved and care about their sister, Adam does not expect them and their spouses to care for her. They hope they can find a couple of caring females who share their values to support her care as a transition as Adam and his wife age. They also hope that the Muslim community establishes a facility where they can send Alia for respite and become confident about her care after their death. They do not have a formal plan in place for her care.

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