Mental retardation is now called intellectual disability.

Symptoms of ID will vary based on your child’s level of disability and may include:

• Failure to meet intellectual milestones

• Sitting, crawling or walking later than other children

• Problems learning to talk or trouble speaking clearly

• Memory problems

• Inability to understand the consequences of actions

• Inability to think logically

• Childish behaviour inconsistent with the child’s age

• Lack of curiosity

• Learning difficulties

• IQ below 70

• Inability to lead a fully independent life due to challenges communicating, taking care of themselves, or interacting with others

I am no doctor or expert on this, so be aware of this when reading this post. I did not want to focus on the intellectual disability but the people who are around them.

It is in most parents’ nature to love babies regardless if they are born with mental challenges. I know of so many within my family who have loved their children and done the best they could. That’s not the issue I wanted to address. I don’t mean to offend anyone due to my very “basic”  knowledge about intellectual disabilities.  I wished to focus on what happens after.

In other words, these children eventually grow older, and as with everyone else, their needs change, so I am asking you to read this with an open mind. My cousin, who is in her 40’s recently lost the person she was closest to who cared for her. She was “joined” at the hip to her mom! 

This is not unusual, except that she is intellectually challenged. She requires special attention because of her needs. My aunt arranged that in the event of her death, my cousin would live with one of her brothers and his family. As much as people make promises, I don’t think they thought through what day to day living would look like for them. It is as if you have a “big baby” in your midst.

Loving children with intellectual disabilities are the “easy” part, and the practical side of what this entails often leaves caregivers exhausted mentally, emotionally and physically.

These children now need to adapt to a new environment. Caring for these children requires an enormous amount of patience. Unfortunately, some parents will nominate a guardian without thinking of the practical side.

The reality is:

• If the parent nominated the wrong guardian based on, who the sibling is more attached to, both sibling and child will be unhappy.

• What happens if that sibling gets married and their focus shifts from the child to the partner? Partners have to be on board with caring for the child too. If they are not, life becomes a battle of wills.

• What if, after the sibling said yes, they changed their minds? What happens to the child then?

• Are the long term plans realistic if the child is not capable of independent living or the parent doesn’t have the finances for places that specialise in this?

• What about the emotional needs of the child? Are they being met? Is the child understood by the guardian?

There are just so many factors to consider, and while finances are important, so is the well-being of the child!

I spoke to her yesterday because I wanted to know how she was coping since the loss of her mom? Not from someone else’s perspective but hers. She says that she sits with the mom’s pictures every day and chats with her. Sometimes she cries, and sometimes she laughs (her words).

Another family member then interjected and said, “it’s been 2 years already, it’s time to get over it!”

As an outsider, if I could understand that she was still in mourning and trying to come to terms with her loss, why was it difficult for them?

The world we live in is harsh for people with no or very few challenges. Imagine how much “harder” for people who are not seen as “normal?”

Though this article was about a specific person, there have been many I have known throughout my life that is mistreated, and or neglected.

Those special needs children who aren’t so “special” to others once the parents have passed on.

No law compels you to look after a sibling with special needs (in whatever form that is) so, if you feel you aren’t able to, then be honest and say no.

Saying no is infinitely better than an intellectually challenged person spending their time on this earth devoid of joy and happiness and constantly being misunderstood when attempting to communicate.

From my side, there is no judgement because I know there are loads of people who simply can’t or don’t want to care for people with special needs.

In the community I grew up in, people “inherited” a special needs child or sibling as if they were “property.”

We need to do better, please.

There are very few institutions or homes that care for these children once they become adults. We are scared of the “very real” threat of abuse and neglect and the affordability of the accommodation, but does this mean that we naturally look to a family member, thinking that “nothing bad” will happen?

We need to recognise that it takes someone special for special needs children.