The hardships and commitment of caring for a child with intellectual disability

dccinc
August 31, 2016 by dccinc
disability for intellectually disabled

Photo courtesy of Tim Bauer

Many people are unaware of intellectual disabilities and how hard and challenging it can be not only for the disabled but also for the ones caring for them. Intellectual disability limits intellectual functioning as well as adaptive behavior. This includes many day to day activities which the disabled are not able to perform and require the assistance of other in order to go about their daily lives. Intellectual disabilities usually start before the age of 18. The parents or the ones caring for people with intellectual disabilities usually require high level of commitment in order to take care of them.

Intellectual disability prevents you from performing day-to-day living tasks:

An article in the Sydney Morning Herald by Fiona Harari takes a look at the life of one mother caring for an intellectually disabled child and how caring for someone with this type of disability takes a lifelong commitment. A quote at the beginning of the article describes the situation perfectly.

Parenting an intellectually disabled child: life forever on duty

People with intellectual disabilities are a silent minority, often forgotten by a society that finds it too easy to look the other way. Their needs are overwhelming – and ongoing – yet their parents face a lifetime commitment.

Intellectual disability is not something that the general public is much aware of. What people don’t realize is the amount of effort it takes to take care of someone with this type of disability and how much credit they deserve.  To give you a slight glimpse into the life of someone caring for an intellectually disability child, here is an excerpt from the article:

He is mostly silent, but not because of adolescence. He cannot speak, so instead of words he sounds out loosely formed single syllables, loud enough to be heard across a room and seemingly so confronting that a middle-aged man in a food hall once complained to Alex’s mother that hearing them ruined his lunch.

As you can see, it is things such as these are the norm for the caregivers. The child in question here is Alex Browne and her caregiver Vanessa Browne. Alex has Sotos syndrome which has taken away his ability to perform daily life activities. An excerpt from the article gives you a better understanding of Sotos syndrome and how it affects someone.

Alex has Sotos syndrome, a rare genetic disorder, sometimes called cerebral gigantism, responsible for his height, his advanced bone age, his impaired speech and his intellectual disability. Physically, chronologically and legally, he is an adult. But while many young men his age are at university or working, facing endless potential, Alex is immersed in an endless, limiting childhood. He cannot read or write, nor can he understand complex ideas, or follow more than basic instructions. Immune to danger and oblivious to the bits of lunch stuck to his face, he is the child-adult who cannot be left alone, who figures that two purple inflated balloons – the total contents of the packed sports bag sitting at the door to his group home – are all he needs for a weekend away.

As you can see, an intellectual disorder such as Sotos syndrome can really make someone unable to take care of themselves. It becomes mandatory for someone to be around them 24/7. It takes great commitment from the caregiver and it becomes even more difficult if they belong to a low socio-economic group. There is assistance available in terms of child disability tax credit for people in Canada. Research has shown that chance of living a rich life for people with intellectual disabilities is very slim. This excerpt from the article gives you a better look:

Nearly 700,000 Australians have an intellectual disability, the majority of whom are unable to communicate successfully. “They are the only people with disabilities that are unable to speak for themselves,” says Professor Christine Bigby, director of the Living with Disability Research Centre at La Trobe University. “They are continually, for the rest of their lives, going to be interdependent.”

The odds of a rich life are slim. Restricted intellect means work opportunities are limited, and many are in the lowest socio-economic group, dependent in the long term on social security. And for all their interdependence, their circles of friends tend to be small and limited to others with intellectual disability and family members, further compounding their isolation. As Bigby says, what they really need are people who will do “not just the physical caring but the caring about”.

The burden usually falls on the caregiver or close relatives. Caregivers also sometimes have to stop working because they need to be there 24/7. It is important for people to realize how much commitment it takes to take care of someone with intellectual disability. There needs to be more compassion for the disabled and the caregiver and friends and close relative must do everything they must in order to reduce their burden.

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