Eli’s Story: A Mother’s Journey to Understanding Disability

Written by: Veronica Kuria
Edited by: Lauren Blair

News of my pregnancy filled my heart with joy. When he was born, Eli was a perfect baby. As he grew, he would amaze me with his speed and daring. However, at two years, he could not speak. As parents, we got scared. I frequented the nearby hospitals but was told that he would be fine. We also visited a special unit for assessment but were simply told to modify his diet to manage hyperactivity. Eventually, I learned of a new term that might apply to my son called “autism.”

I began to search the internet for more information. I could easily apply the autistic behaviors mentioned to Eli. However, my husband denied and disregarded these findings. Despite this, I continued to take Eli to hospitals and appointments where the doctors ran additional tests—all of which showed that my baby was “alright.” Yet I still felt that something was wrong. I started taking him to therapy sessions on my day off from work. On many days it could take 4 hours to get there and, if I was late, I would turn back in tears. Eventually I was linked to another facility closer to home.

Community Perceptions

When I took Eli to a nearby school, I had to constantly explain his behavior and abilities to his teacher. Unfortunately, our local school and community remained unfamiliar with autism, and I realized I would have to look for another alternative.

Even our family and church members lacked understanding. Our family came up with strange and weird explanations for Eli’s disability: that we were being punished for giving him the wrong name or for having dowrydebts or that someone close to us must have used magic spells on him. At church, we were advised to pray and fast since autism was believed to be the work of the devil. I was scared, wondering why my boy had autism and if he would ever lead a normal life.

A Turning Point

The turning point was in May, when my pastor asked me to visit an event supported by Kupenda for the Children. It was during my time there that I shared about my son with a staff member. I was invited to Kupenda’s office and was overwhelmed by the warm reception, patience, and hospitality of the staff. I shared my experiences with Eli and felt perfectly understood. I was taken through a long counseling session where my worries were answered, including the possible causes and risk factors. It was a tremendous relief.

One of the best things Kupenda did was to link me up with other parents of children living with disabilities. Attending this group, I have found solace, and my life has changed. I am more appreciative and positive.

Now I understand my child better than before. I can confidently explain autism and Eli’s behavior to anyone, including my family. Today Eli is in school and can even communicate in two words. I can’t help but feel happy and positive at the improvement that has taken place in both me and my child!

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