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Caring for an intellectually disabled child

Cathy is a mother of two boys and a daughter named Samantha. Like any new parent, Cathy was full of joy when she expected her first child, Samantha. But fate dealt her an unexpected blow. Due to complications at birth, baby Samatha suffered brain damage. Samantha, who is now 23 years-old, was born with an intellectual disability. Her mother, Cathy, has had a difficult time raising her.

“You can’t get out of the house. I mean if Samatha feels like screaming her head off, like if we’re in the middle of Checkers, she will scream for no reason... Or if she can’t get to the loo quick enough. It’s hectic”, says Cathy.

Being intellectually disabled means Samantha’s brain is not fully developed. She behaves and thinks like a one year-old child. Cathy says communicating with her daughter has been the most difficult thing as Samatha simply does not understand anything that she says.

“You can’t reason with her. I can’t say to her: ‘Wait five minutes or wait one second or don’t fill the trolley up with 400 packets of things’ when we go shopping because she does not understand. If that’s what she wants to do, that’s what she wants to do. And eating in the shops... I mean, if she feels like having a sausage in the shops, she will take it out of the packet and eat it. Don’t try and stop her because then she’ll scream the whole shop down”.

Cathy’s husband often helps his wife with their daughter so that Cathy can take a break. However, Cathy admits that it is particularly challenging for her husband to look after Samantha.

“The one year I was on holiday and my husband took her to the zoo. She was about 13 years-old and she was not toilet-trained yet. She was still using nappies. And here is this man with a 13 year-old girl who needed her nappy to be changed… like there was nowhere a man could take a girl and change her nappy without it looking like he needs to get arrested”, says Cathy, recalling an incident some years ago.

Cathy has two other children – two perfectly healthy sons, aged 15 and 18. She says the brothers are very good with their older sister.
“They allow her to bully them and push them around. If she wants them to swim in the middle of winter, they will. They are very good with her and very passionate”.

The Hall family had to make a difficult decision to place Samantha in a special care home, called Little Eden after having lived with her for 16 years. Cathy says she had to deal with feelings of guilt and failure when she sent her daughter to the home, but says it was ultimately the best option for Samantha and the rest of the family.

“I really love my child very much and I am very grateful to Little Eden for helping me take care of her. It’s a weight off and I know she is well cared for here. She’s got full-on care. She visits once a week and we have a great time together and we can devote our time and attention just to be with her and doing exactly what she wants to do. If she wants to bath a dog, we will stop whatever we’re doing and bath a dog” says Cathy.

According to the South African Federation of Mental Health, parents should look out for intellectual disability symptoms in their young ones. Some of the symptoms include: a baby that is either very stiff or floppy, a baby that cries all the time and can’t be comforted and a baby that is slower than other babies to sit, stand and walk.

“With intellectual disability... at times you refer to learning difficulties, meaning that if proper interventions are offered, then a person may be able to still function in a school environment. In most cases, you may find that there are neurological problems with the child. You may find that there is a severe injury or a person was born with this condition, and based on that you may classify it as a disability” says Wits University psychology lecturer, Malose Langa.

Langa added that many people do not have information around intellectual disability and that awareness around this condition needs to be raised.

“You’ll find parents insisting: ‘There is nothing wrong with my child’. And they will, in fact, take this child to a main-stream school and, obviously, given the child’s intellectual capacity, they struggle to cope in such an environment. And a child will repeat one grade three to four times, and if the child repeats a grade three to four times, it kills that child’s confidence” concludes Langa.

Source: Health-e News , By Siphosethu Stuurman

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