The things you need for family wellness when one of you has Down’s syndrome can vary widely, because there is a spectrum of intellectual disability that a person with Down’s syndrome may experience. According to Leslie Kenny, who works in the Family Support Program of the United Arc in Greenfield, Massachusetts, this is also dependent on the age of the individual with Down’s syndrome.
Kenny says, ‘What tends to be the most difficult (in the home setting) is the greater tendency for people with Down’s to develop Alzheimer’s as they age’ but when it comes to the wellbeing of children with Down’s syndrome, ‘it is first and foremost that families realise they (the child with Down’s) need a lot of opportunity for stimulation while keeping the home environment safe at the same time.’
According to Kenny, what you need to do to create this opportunity depends on your child’s ability level, and you might find it helpful to go online or consult a physician about organisations that can visit your home, make recommendations and supply resource choices. This person will be looking primarily at safety and self-care issues, and recommending uses of things you already have or new strategies you can implement.
If you have someone with Down’s syndrome living with you, Kenny says that a vital component of your home should be a supportive space for you, the care giver. Just having a private space, library, office, or bathrooms with a little extra, like a whirlpool, can not only balance your emotional wellness, but that of everyone in the home.
Carl Johnson, who works with Arc as an adaptive equipment designer, adds ‘If you have a complicated or highly modern home with lots of push buttons, furniture, and technology, that can be hard for a person with Down’s. You want everything to be as straightforward as possible’. For example, you want an oven and hob ‘that has a relational pattern between the burners and the knobs…so that the person doesn’t even need to be able to read’.
Consult your doctor, or look online for more information about what you need to do to make your home safe and secure. Remember that making adaptations for a person with Down’s syndrome is very individual, and that professional guidance is a good idea.
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