In this profile, meet Dr. John Maina and his son Joemark. Hailing from Kenya, Dr. Maina presented to the United Nations General Assembly as part of their observance of World Autism Awareness Day 2016. And in this profile, he continues to share pride in autism acceptance, inclusive education, and most importantly, his family.
Tell us about yourself and your son, Joemark.
I work as the Director of Program Research, Evaluation and Development at the Boston Higashi School (BHS). BHS is an international school for children and young adults (ages 3-22 years) diagnosed with autism, located in a suburban town approximately fifteen miles from the city of Boston, Massachusetts in the United States.
Prior to coming to the United States, I worked as a high school teacher and deputy principal in Kenya. I have training and experience in special education as well as educational leadership and planning. I’m well versed with educating children and young adults diagnosed with autism. On the other hand, I am married and a dad to three boys. Joemark is the last-born.
My son Joemark is 13 years old and attends a public school in Massachusetts. He is a very pleasant boy who loves music and dancing as well as playing basketball. Like other children diagnosed with autism, Joemark has gone through many challenges as he grew up.
How are autism diagnoses treated in Kenya?
The Autism Society of Kenya estimates that there are approximately 800,000 persons with autism in Kenya. Indeed, Kenya, like many developing countries experiences an acute shortage diagnostic and assessment services for children with autism. Most of these and related services are concentrated in the main urban centers especially Nairobi City. The situation is compounded by lack of reliable data on persons with autism and where they live in order to map out strategies for effective intervention. Furthermore, a complex web of social and economic barriers adversely impact on the success of educational interventions even where diagnosis of autism is determined. Due to attitudinal and cultural beliefs children with autism are stigmatized. However, there are Educational Assessment and Resource Centers (EARCs) across the country for assessment and placement of learners with disabilities, including those with autism. Unfortunately, most of the students with disabilities once assessed are, for most part, not placed in age-appropriate classes. In the special education units children of diverse ages and disabilities learn together, with some of them staying in the same class for many years. The lack of early identification and assessment denies children with autism early intervention services that would otherwise facilitate greater learning and achievement. The situation has been gradually improving over the years but bold and urgent reforms are needed to ensure students with autism benefit from special education and related services.
What is your role at the Boston Higashi School, and what do you enjoy most about your career?
As the Director of Program Research, Evaluation and Development, I provide overall leadership and coordination of the Boston Higashi School research initiatives I am also involved in the overall school program evaluation and development. I really enjoy being around and working with our students. I also love training and mentoring our staff. I feel I do what I love most and I count myself blessed to have had this opportunity!
Tell us about the relationship between Joemark and his brothers. How has autism shaped your family, and your marriage?
The relationship between Joemark and his brothers is very cordial. He loves being around them and going for outings in the community with them. Accepting Joemark the way he was from the time he was born and always being there for him regardless of challenges he faced has been very helpful to his growth socially, behaviorally and in all the other aspects of his life. His two brothers have been his heroes whose support has been huge, to say the least, in his learning and in navigating through the challenges that come along with an autism diagnosis.
Autism has strengthened our marriage. It has not just increased our commitment to each other and to our son but also to many other families with children diagnosed with autism here in the U.S. and abroad.
What advice do you have for parents with children who have autism, especially those in underserved communities in Africa?
Parents should never give up on their child! They should also never apologize or feel ashamed because their son or daughter has autism. I would like them to know and have unwavering faith that their child with autism will realize his/her full potential if they nurture their talents and abilities. In fact, concerted efforts must be made to create awareness among families and communities that children with autism need to go to school. After all, the overarching principle of inclusive education is that every child counts! At home parents should treat them like other children, providing opportunities for them to learn, socialize, work and have fun. They should not hide them; instead they should effectively involve the community in their learning. We all know “it takes a village to raise a child!” The founder of Boston Higashi School, Dr. Kiyo Kitahara affirms, “in every child exists its most precious bud of self identity.” Children with autism are a blessing and they deserve nothing but our caring love and best effort from all of us!
What are your hopes for Joemark's future?
I am very hopeful that Joemark will continue to grow and thrive, while overcoming the challenges associated with autism along the way. I see him engaged in productive and meaningful activities (including employment in future) while enjoying a better quality of life. God has been very faithful and gracious despite the challenges we have gone through as we tried to figure out each next step. At every turn we have seen God’s favor upon Joemark and our family! I am eternally grateful to his teachers both in Kenya and here in the United States who have worked so hard to help my son.