My name is Fatima Sahra Ahmed. I’m a mother of three, and two of them happen to be children living with special-needs disabilities.
I have a five year old son living with cerebral palsy, and then I have a one and a half year old daughter who has Down’s syndrome. After having the second child, I had to resign from work because I needed to be a stay-home mum to understand the condition and take care of my child.
I think the greatest challenges have to do with the healthcare system because we don’t get the needed medical intervention for most of these children. Most especially those that have the complications and, you know, it’s really financially draining. It’s emotionally, psychologically and physically draining so these are some of the few challenges we face as parents who are caregivers.
I actually started a support community for parents who are caregivers, because when I found myself in the situation of having a child that came with so many complications and I didn’t get to have any support community that could be able to help me through the journey.
I couldn’t find people of like minds who would sit together and talk about our experiences, lessons learnt, mistakes that were made among others. I understand the pain, I understand the journey so I can be able to help parents cope better and manage their children better.
How I feel when I look at my children is, I have this bottled-up emotions. Why? Because I need more for them. I want more for them in terms of medicals, in terms of school, because a lot of schools that are inclusive are quite expensive.
Now I want people to really understand that these children are not from another world. These children were not swapped when you were pregnant with them. You didn’t not offend any juju. It’s purely a medical conditions that when you treat well, when you go for the therapies, the medications, your child will thrive and they will reach their full potential.
Going forward in the future, I would like for the healthcare system to be revamped. To have all the necessary tools, equipment, resources, to bring the change that we want to see to be able to cater for the needs of our children.
Fatima Shara Ahmed from Nigeria, set up a support group for parents and caregivers of children with special needs, after struggling to find support and hear from those with similar experiences to her own. There are currently about 25 million people in living with disabilities in Nigeria.