When Ray (Potentash) contacted me to write about what we deal with as parents of special needs children, she asked me to write about the pain we face. That sentence stayed with me because I wondered how I would be able to put what we experience into words. You would think that in 2020 we would not be discussing issues on discrimination. People seem to be more knowledgeable with the increased use of technology. However, we still are facing discrimination, and one that is not talked about; the discrimination against children with special needs and neurodiverse disorders.
Living in Kenya, this form of discrimination is very common. Some infants are abandoned at birth, called a bad omen, or left in forests to be devoured by wild animals. Others, even those living in cities will hide their children in dark rooms so as not to be seen by friends and neighbours. Some will be in a room for most of their lives, never to know the love of a parent or the warmth of basking in the sun.
As a parent of a special needs child, I came into this world 6 years ago when my beautiful daughter was born. At first, when she didn’t reach her milestones most would comment and say “don’t worry, she’ll wake up one day and run”. “She’s such a cute and quiet baby! You are so lucky”. As she grew older the milestones came very slowly. This is when I realized that most Kenyan adults are quite mean towards our beautiful children.
We have faced discrimination in Church, where people would stand up and change seats if we are too close to them.
We have faced it in school where teachers completely ignore our children and deem them as too much work.
We have faced discrimination on playgrounds where parents out rightly tell their children not to play with ours.
We deal with sneers and stares in supermarkets and malls because our kids walk with a different gait and struggle to navigate common areas that are not constructed with them in mind.
We are fleeced with high therapy fees and medical tests because our government has failed in taking care of our children.
The list is endless and is a reality we face every day. People call us strong not realizing that it is not a compliment. We are not strong, at all. We are simply trying our best to protect and provide for our children. Most parents of special needs children are most likely suffering from anxiety, depression or both. We are in a state of constant worry. Our brains do not know nor understand the concept of rest because there is something that always needs to be done for our special kids.
We worry what will happen when they hit puberty; what will happen when they are adults in a society that hasn’t accepted them, and the scariest fear that consumes us; what happens to them when we pass away? The thing is, we cannot solve a problem by ignoring it. We are trying to access people in government to help us implement laws that will help us raise these children better.
I have said before that parents and caregivers of children with disabilities of all kinds need tax rebates. This would provide the parents with more disposable income to take care of their vast needs. Personally, I believe “special schools” should be abolished. We don’t live in a special society, so why segregate these children? All schools should have programs that include and incorporate those with any form of disabilities. This will show kids that it is okay to be different and will learn how to include them in all activities.
But how do we help the parents and caregivers of children with disabilities? Empathy and kindness.
First, please never ask them “what is wrong with your child?”. This question is unacceptable. It is hurtful and rude. Try and keep in mind that we are dealing with a lot. We might not be readily available for bridal or baby showers, wedding planning, or even ‘’Harambees”. For us, the medical expenses we deal with are quite high. This doesn’t mean you stop inviting us for fun activities, all we ask is for a little understanding. It goes a long way.
If your friend, sibling, or relative raising a special child is withdrawn, try and reach out. More often than not we are mentally and physically exhausted. Burn out hits us like a train. So we might retreat into a shell to try and get ourselves together. Our world is a difficult one. Sometimes we breakdown due to the weight we carry on our shoulders. So if you know someone raising a beautiful child with mental or physical disabilities, please, I implore you, Be kind. It is all we ask.