Esther Njeri Mung’ui is a mother of two boys. Her eldest, Ian Munyao is an autistic child. She tells MERCY MUGURE her journey of parenting her autistic child and eventually starting a center to care for similar children.
Tell me about your pregnancy journey and birth of your child?
When I found out that I would be a mother, I was very excited. My pregnancy was smooth and I had an easy time. That lasted until child birth when I developed complications due to prolonged labor. After many hours in labor I eventually had to undergo Caesarian Section. When my son was born nothing looked out of the norm and a few days later, I took him home with me. It was much later that I noticed that he had delayed milestones. He walked at almost 18 months while in normal circumstances children are able to make the first steps by their first birthday. Since his general health was good, at first I ignored the delayed milestones as a cause of alarm. That was until he was about two-and-a half years. He couldn’t make any bubbling sounds, spoke no words and was super hyperactive. I was very concerned. I sought a medical checkup at a children’s hospital not too far away from my home. The doctor casually told me that my child was Autistic but referred me the hospital’s main branch for a more comprehensive checkup. Here I was advised to reduce gluten and milk. There wasn’t any further information. I didn’t think there was any reason to worry because even when the doctor diagnosed my child with Autism I didn’t know what it was. Besides he didn’t seem alarmed and I assumed this was another medical condition that would be treated in no time. It only dawned on me how serious the condition was when I researched on the internet. This was the beginning of our many trips to the hospital to seek a second opinion. All sorts of tests were administered on Ian including an MRI but the results were all the same. There was no much support from friends and family as many didn’t understand autism.
What are some of the symptoms that an autistic child exhibits?
There is notable behavioral patterns such as rocking, flapping, pacing up and down, are withdrawn such as they prefer to play alone, arranging toys or play items in a certain border, lack of speech, lack of eye contact, hyperactivity, self-injurious and blocking of ears among others.
In Ian’s case, he struggled with hyperactivity, aggression, behavioral issues like rocking back and forth and spinning on the ground. He was also very withdrawn and had no social interactions. He would block his ears and start screaming. It was hard because he was not toilet-trained either up to the age 10, so he was on diapers for 10 years. Raising a child with a special need is financially and emotionally demanding. Ian has since outgrown most of the behavioral challenges. His challenge remains speech and language but he is making improvements. He is a siting for his class 8 exam this year.
How did having an autistic child affect your life?
It has totally changed my life. I have learnt to exercise patience, love him, be more understanding and embrace his diversity. I have had to learn more skills so as to support him the best way I can. It has also made me change my attitude; I have had to lower my expectations of him and understand that he is different from other children and has his own strengths and abilities which I always strive to help him achieve in life. As a parent there are those sacrifices you make because you want to give your child the best. So I enrolled him in a good school that supports him and taken him through interventions such as therapy. At home, we also had to adjust our diet in order to accommodate his special diet. Processed foods, sugars and milk are no longer part of our meals and this has had such a positive effect on him.
How did you decide to start an education centre?
At the age of 12, Ian became echocalic. Prior to this he was nonverbal. He began showing lots of improvement and could sit still. I therefore enrolled him in a regular school. The teachers however, couldn’t handle him well so we changed schools twice. It became very frustrating as regular schools were not equipped to handle a special needs child. In my frustration I decided that he would stay at home. At one point, I decided to do homeschooling and a parent with a similar problem approached me. So a thought came to mind; why not look for a premise and have a teacher come there and teach the two kids. I talked to a friend who is also a special needs teacher. The two of us partnered and established Elysne Education Centre in Utawala, Embakasi starting off with two children. Five years down the line 50 children have passed through our hands.
Have you identified Ian’s gift or talent so far?
Ian is very gifted in various areas. He is very good in Computers, can design graphics, fine arts and the best of all is music. His voice is magical; he listens to a song and brings it out exactly like its original. Although he still has speech/ language issues, when it comes to singing he articulates the words in a song clearly. He has performed at state house,Churchill show and many churches.
What kind of support do you think mothers of autistic children need?
There is need to sensitize the general public and create awareness on Autism. It is equally important to have support structures. So far in Kenya we lack well equipped or modernised schools or centers to support Autistic children according to their needs. Most of the available services are out of reach for many parents due to high cost. My advice to parents who have autistic children is to embrace diversity and give their child the rightful interventions early enough starting with the simple ones like dietary interventions. They should also read a lot about behavior modifications because there is a lot of information on the same. It is also important to get your child properly diagnosed, go for assessment for school placement and work to achieve the ability of the child as it’s not always about functional academics but there is something each is good at. Parents also need to sensitize those around them to avoid stigmatization of the child and finally pray to God for guidance.