The perils of parenting a special needs child

Leadership & Business Coach Hannah Lecha spends much of her time reaching out to parents of children with disabilities. She knows how overwhelming it can be because after all, she is raising a daughter who is epileptic. “About six years ago, my daughter was diagnosed with meningitis just before she turned 3 years old. “Our lives have never been the same, ever since. Three years post the meningitis diagnosis she was further diagnosed with epilepsy.

She has since regressed in her speech, language skills, auditory processing skills and exhibits a whole array of other developmental delays,” shares Lecha. She adds that parenting a disabled child usually involves a great deal of patience and can be very time-consuming. No one makes a plan to parent a special needs child. “The child simply arrives and the day she does is heart-rending and life as you know it is redefined for you,” she says.

The Maun based mother laments feelings of doubt and hopelessness at what the future has in store for her daughter. Her struggles launched her into the role of Executive Director of the Hannah Lecha Foundation. The organisation empowers and conducts training so parents know of available resources to help their children grow. This includes knowledge of public laws and individualised education plans to target a child’s specific needs.

Recently she partnered with Ambrose Trust to host a workshop titled: ‘Giving your special needs child a chance to thrive,’ at the University of Botswana. She explains, “These parents need a level of support that is difficult to give if you haven’t been in their shoes. The understanding that was shared during the workshop was very powerful. “It was especially helpful because these parents are very isolated and despite information that may be available, still end up feeling as if their struggles are unique and represent their failures as parents”.

Furthermore, she says that parents often find themselves wrapped in the struggle of raising special needs children and strive to do everything they can to support them. “We love them unconditionally and protect them at every turn. Sometimes, in the midst of this love and protection, we end up limiting our children and affecting their development,” she said. In the meantime, programmes for those with developmental disabilities remain fragile.

Medical aids specifically, she says, need to be held to task to offer more support to children with special needs. “I have had to open two medical aid schemes just so I can up the cover for my daughter, still it’s not enough”.While children with special needs do not come with manuals, Lecha says the best thing a parent can do is to accept the reality of their child’s condition and not hide them, they should allow themselves to grieve and finally learn and implement some tools to empower themselves and their children to thrive against all odds.