My name is Henrietta Sowo Bassey. I was born and raised in Sierra Leone, but migrated to the United States in 1986. I am married with three children and have over 25 years of experience in the medical field as a registered nurse. I am also a Certified Autism Specialist (CAS).
Our second child, Edrissa Bassey JR, (affectionately known as Junior), was born in Ventura, California, in the United States of America in 1990. He weighed 10 lbs 10 oz and was a beautiful healthy baby boy.
I breastfed him for nine months, he crawled at five months and walked at nine months. He was active and lively, and doing well, until he started attending a daycare center at Oxnard college in 1992. That’s where our story begins.
The staff at the daycare noticed that he was not socializing with the other children, and was very aggressive when programs or routines were changed. He was not producing any speech sounds, and liked to play by himself.
At home we noticed that he would not respond when he was called, and was not interested in sitting in one place for me to read to him. We thought he had hearing problems and took him for a hearing test, which showed that he had no hearing problems. He would line up his toys and shoes daily, and if we removed them, he would throw a tantrum. We noticed that he loved to climb high places like the fireplace mantel, TV etc., and loved to enter tight, enclosed spaces like cabinets or the dryer. We did not know why he behaved this way, and were more careful not to leave him unattended for even a minute. I remember always taking him into the bathroom with me when we were home alone together to avoid any accidents where he could injure himself.
After multiple trips to the doctors, with no diagnoses or explanation for his lack of speech or aggressive behavior, we were finally referred to the Tri Counties Regional Center. At the Tri Counties Regional Center, he was finally diagnosed with autism.
Around this same time, he started having high fevers, which were followed by grand mal seizures. We thought they were febrile seizures at first, but they weren’t, and no, it was not vaccine related. Now we were not just dealing with a diagnosis of autism, but also a seizure disorder. Thank God, the seizures are now being controlled with Trileptal, and he has not had a seizure in over ten years.
My husband and I were in denial. As a nurse, I knew what autism was, but was not prepared to readily accept this diagnosis, as there was still so much not known about autism. Being told there was no treatment was devastating, and like any other parent, we couldn’t believe that our beautiful son was not going be able to live the “normal life” we had imagined for him.
After going through the grieving process, we finally accepted the diagnosis and began seeking help for our son. We looked into speech and behavior modification, and occupational and physical therapy, from multiple agencies. As time went on, he went from being mute, to making sounds and finally producing words. This didn’t happen overnight. It’s was a long 12 years.
Over the years, my husband and I felt helpless seeing our son struggle with severe expressive speech impairment. While he attended special education classes in schools in our hometown Oxnard, I became his home teacher continuing the lessons taught at school. I have helped him with his reading, personal hygiene, activities of daily living and spelling. I was not willing to accept that my son would not be capable of expressing himself or his needs. He had trouble handling the ins and outs of daily living activities and social skills. Junior has been fortunate to have access to programs in the USA that have helped him to be independent and accepted by his family and community.
This is not the case in my home country of Sierra Leone. I have traveled back and forth to Sierra Leone with Junior since he was a child. On these trips, I have seen so many individuals with the same problems, being received with minimal support and acceptance. I have decided to open a day program where adults with special needs can spend their day in a supportive and safe environment. I want them to have access to a facility where they are taught the skills to achieve independence, confidence and self-reliance. I want them to learn the basic activities of daily living including bathing, eating, bathroom skills, money skills, grooming, dressing, social skills and safety measures. I want them to get to participate in recreational activities including games, music and dancing, sports and field trips.
With no access to day programs in Sierra Leone that cater to them, I have witnessed adults with special needs roaming the streets and having to endure living in an environment where people sometimes throw rocks at them, yell at them or suffer beatings.
This breaks my heart as this could have been my son, had he not been born in the USA.
Adults with special needs want what everyone wants. They want love, support and acceptance. This can be achieved if we raise awareness and sensitize the communities to their disabilities, and help them understand how they can support individuals with special needs.