Does having special needs mean you are no longer free? Does being dependant on somebody mean you are now their slave? The reason these thoughts come to me is because in a recent meeting a mother of a 15 plus years old autistic boy said that her son's daily life was carefully monitored, as left to himself, he would either do nothing or something inappropriate. This was in a discussion where the 'what after us?' question was being discussed. Obviously the mother felt, probably like many parents of autistic children that keeping their wards engaged in meaningful activity was an absolute must.
The mother in question was asked if she had ever given a choice to her son, on what he wanted to do and she said, him being non-verbal and non expressive, such a situation was not practical. Yes, again, left unmonitored, he would resort to meaningless activities, she said.
This is not an unusual condition among special families. Very few families actually even think that their special kids might have a choice in the matter of what should be in their lives, which school, class, therapy, sports, hobbies or social occasions they want to be part of. Almost all think, the child is not smart enough to make a choice. Yet all the parents ever want is for their children to show a glimmer of intelligence and motivation. Isn't intelligence and freedom deeply connected? Can intelligence flourish without choice?
When we ask our neurotypicals to work towards various competitive exams, we know that the ultimate motivation has to come from within the child, to focus, work diligently over many months, if a positive outcome is to be the effect. Then why don't we give the same rope to special children? Really listening and accepting their choices is fundamental to their being motivated to do any work, to improving themselves. A special child is not a computer to be programmed. He comes with his likes and dislikes, abilities and disabilities, desires and needs. We have to slowly learn and adjust ourselves to all of them if we want the child to be a rounded adult.
We want desperately for the special needs adult to be independent, but rob every moment of freedom and 'channelize' the child in some activity or another. Is it a big surprise that the adult can never know what he wants to do, because he was never given a chance to express and fructify what he really for himself ever. Striking a balance between freedom and rational restrictions is a must in good parenting. We cannot be 'pleaser' parent, and some boundaries have to be drawn. But then, freedom to choose harmless things, freedom to err in choices, freedom to pick and move on to make better choices, aren't all this what all of life is really about? Shouldn't we start training our special needs children to actually exercise this freedom and express themselves strongly, without an apology.
- By Vimal Balachander.
P.S. Vimal is a Peer on SoulUp. Her son, now 20 yrs old, was born with Fragile-x Syndrome. If you have had a similar journey and would like to have a 1-on-1 conversation with her, you can book one here.