What a busy day. We did home visits in Baulini and at Kabannana Compounds for children who receive home based education. These children are deemed not ready for school and therefore receive one home visit a week in which a teacher, physio or assistant teacher (direct support professional) works with the family to implement educational programs. It was interesting to interact with the children and their families. Here is a glimpse of our learning:
Veronica (age 12 - though she looked to be about 6 or 7)- Veronica was outside of her home when we arrived. She is unable to walk on her feet though she seems to get around fine on her knees. She was able to make sounds and could say a few words. Her teacher had a bag with her with a puzzle and some books in it. Veronica's eyes lit up when she saw this. It was so clear that veronica was eager to learn. She used to attend Baulini school and also received physical therapy once a week. Unfortunately she no longer able to go to school or therapy because she has gotten too big for her friends to carry her a mile to school each day. Veronica's mother works and is a single parent so Veronica now stays home alone each day with only the supervision of younger children in the compound and neighbors. If she had a wheel chair she'd be able to find a friend to push her to/from school. A Zambian made wheelchair costs about 1.8 million Kwatcha or approximately $400. This is what prevents her from the opportunity to learn at Baulini.
Muika (age 1.8 years)-
This was wonderful to observe. This little boy is one of a few who receive early intervention services in Zambia. This is not common. Children attend school beginning at age 7 and very very few go to any type of pre-school program. Muika has cerebral palsy which was diagnosed shortly after his birth. He had a specialized chair made out of paper that enabled him to sit up. These chairs are often the result of an identified need by a physical therapist. Muika was not impressed with the white strangers in his home and he let us know that right quickly so we left shortly after meeting him.
Abraham (age 8 though he looked about age 3-4). Abraham was a young boy who lived with his father. His mother died this winter of AIDs and he is now cared for by his sisters and father. He was extremely small for his age and had cerebral palsy and epilepsy. He was not receiving special education because he was not thought to be ready and there was little opportunity to get him there because of the long walk and lack of wheel chair.
Sylvia (age 2) When I saw Sylvia I was pleased to see that she seemed to be about the appropriate size for her age. Every other child I had seen on this day and others appeared to be about half the size I would expect for their developmental age. I was also so excited to see another child receiving home based education who was under the age of 7. It leaves me with such hope that the Ministry of Education and the Disability Service Organizations are beginning to understand the importance of early intervention for children with disabilities. From her appearance I would guess that Sylvia has Cornelia De Lange Syndrome. No one who was with us, teachers, physical therapists (physios), administrators knew what this disorder was. Sylvia appeared to be having many seizures while we were in her home, she appear to having a hearing problem, was pretty floppy and had microcephaly. At the end of the day I was able to get access to the internet and sent Mikala some information on Cornelia De Lange Syndrome. I am also hopeful that Syvia will be able to get medications for her seizures (Baulini has a program commitment to providing seizure medication).
We met and heard so many stories about children and adults with untreated seizures. One little boy was left at home alone while his parents were working and he had a seizure and fell into the fire and was severely burned all over his face. A friend of Mikala’s at church was kicked out of school at grade 7 because the teachers and children ran away when she had a seizure because they thought she was possessed – this woman never married and has been an outcast every since. Mikala says she is such a smart woman and her educational opportunities were squashed due to her seizure disorder.
Bruce (age 16) was at home with his older brother. He has received home based education for some time. Though not diagnosed, it was clear that Bruce had autism disorder. He was not in school because of his difficulty focusing on learning and his repetitive behaviors which sometime result in others being hit. His teacher began their lesson plan and Bruce was currently working on trying to hold a pencil and write a line within a picture. This seemed like an almost irrelevant thing to be teaching Bruce at the moment. There was so much need in the areas of communication, social interaction and life skills that needed attention. Not to mention increasing Bruce's ability to be interested in learning new things. The concepts of applied behavioral analysis and augmentative communication just are not known to the teachers. There is so much need to reform and build improved special education services here. Bruce could thrive with the right help.
(Boy age 7) This little boy we met was not yet in home based education. He was being screened and was meeting his teacher for the first time. He lived with his grandmother. His mother was a school teacher and had been assigned by the Ministry of Education to teach at a school some 400 km away. Because she was a new teacher she had to go to her assigned post and could not yet ask for a transfer. She had no one to care for her son when she was away teaching. Therefore it was left up to the grandmother to provide care. She used to carry him on her back to the physio clinic which was a very long walk and then bus ride. The grandmother was recently diagnosed with a heart condition and was simply unable to carry this boy on her back any longer. This is why he was being referred for home based education. One interesting aspect of this initial meeting (we’d call it an intake) was the description of the home based program and the very strong emphasis placed on the role of the family to provide education and support 6/7 days a week with the home based educator only there one day a week. The family was asked to commit several times to this program and to their role in the program.
Will post photos soon.
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