“The incy wincy spider went up the water spout…” the speech therapist sang and gestured at the first session. It was not long before Kamau was engaged and imitating her. The session seemed to end too soon. As we climbed the staircase to start the journey home, Kamau said, “Up! Up! Up!” as he took each step. I chased back down the stairs to his speech therapist. “Kamau is using ‘up’ appropriately!” I blurted. My heart sang! It had been a long time since I had heard Kamau use a word.
At four months old Kamau reacted very badly when I started him on formula milk for babies. I was told he was allergic to dairy milk. I started keeping a food diary and noticed that he became hyperactive when given chocolate or foods with sugar or artificial additives. Although Kamau had been naming body parts, it seemed that at eighteen months that stopped all of sudden. He no longer appeared to notice when he was spoken to. Doctors said there was nothing wrong with him.
The Jamaica Association for the Deaf said he was too young to respond to the instructions he would be given on a test and I should come back with him when he was at least four years old. The tests confirmed he was not deaf. I felt puzzled. It was at that stage that the MICO CARE Centre had told me about autism and the speech therapist.
Shortly after she began the convincing speech therapy sessions, the speech therapist left for another country and there were no other speech therapists available in our area. A friend had advised me to talk with Kamau as much as I could. After heated negotiations and despite their misgivings about accepting him, Kamau was offered a place at Jamaica Preschool for the Deaf. He enjoyed doing puzzles and working with shapes. He sang the songs he heard and he loved leafing through books and magazines. His vocabulary increased. At age six, he started at Jamaica School of Hope. He enjoyed the drama and horticulture sessions there, but on the actual day of the Christmas play he ran off the stage!
In the summer of 1991, a relative offered my older son a trip to England as a present for passing his common entrance exam. Their father felt it would be best if I went too and we decided that I would take Kamau with me. There were no problems during the flight. The boys adjusted well to being in a different country and we went to church on our first Saturday in England.
Kamau roamed from person to person in the congregation and would sometimes run his finger around ornaments or decorations on their clothes. He was eight years old. Some people were visibly upset, some seemed nervous and others seemed curious. One woman whispered, “Is he autistic?” We had a chat after church. After I told her that I had wished I was a nurse because I would have a better idea of how to help Kamau, especially as he seemed to be so affected by his diet, she told me about Learning Difficulties Nursing. Although I had expressed interest, I was still surprised the following Sabbath when she brought me information about applying to study nursing.
Many thoughts swam around in my head. Our family needs me in Jamaica. My oldest son is about to start high school and my youngest is eight months old. On the other hand, Kamau was really happy in England and had started attending a playground for children with special needs. I had been warmly welcomed at a parent group for children with disabilities. It seemed the specialist help which Kamau needed was available in England. It was heart-wrenching to separate my family, but Kamau and I stayed in England.
Kamau was assessed as having special needs and one-to-one speech therapy was recommended. At age 8, he starting attending a weekly boarding school for children with autism, but up to today Kamau, at age 28, has not had a single session of one-to-one speech therapy. He has been put on medication and my concerns about diet marginalised.
Over time, Kamau’s behaviour became increasingly challenging and for the past eleven years he has been living far from his family and community in a fifty-two week residential home. His health, independence level and social skills have deteriorated and over the last two years, he has been isolated and rarely gets a chance to engage in the activities he enjoys. He used to makes ceramic items, enjoyed working with plants and animals and loved music and dancing, art, craft work, swimming and horseback riding. Years ago he received an OCN Level 2 certificate in woodworking, but Kamau is no longer allowed to do woodworking. Kamau’s interest in learning remains.
I would love to see “the old Kamau” return and I still hope Kamau will have access to one-to-one speech therapy and get help with managing his behaviour through the services of a qualified behaviour therapist. I believe that if these services were available to him, Kamau would be a lot closer to fulfilling his potential than he is now. I believe Kamau would benefit from more frequent contact with his family and community and that his family and community would benefit from increased contact with him.
It is with a sense of joy and optimism that I read the stories of those autists who are given the opportunity to do the things others of us take for granted. It is wonderful too to see the work being done by organisations and individuals who are advocating tirelessly on behalf of those with autism. Parents, do not doubt that you can make an enormous difference in the life of your child with special needs.
Having Kamau has had a very positive effect on my life. My aspirations for him inspire me to become better equipped to help him and other people with disabilities. My experiences with Kamau and with other families who cope with disabilities have led me to study a variety of areas including complementary therapies, law and sign language. I want to use these skills to help improve the social interaction and health outcomes of people living with disabilities and autism in particular. My family has learned to be more tolerant, inquisitive, loving, giving and forgiving because of our experiences with Kamau.
My vision for Kamau has mushroomed into a commitment to ensuring that systems are in place to help adults with autism enjoy good health, experience positive interactions with the rest of society, develop their skills and self-confidence, are prepared for employment, earn a fair wage and perhaps even raise families of their own. Autists have a unique contribution to make to their families and the world. I have faith that with increased assistance from and involvement of like-minded people, the puzzle of autism will become a meeting point for engaging our best selves and for fulfilling the words of an anthem that exhorts us to learn “true respect for all.”
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.