FAMILY PARTNERS PROGRAMME | A Perfect Day
The “Farm Boy”
Several years ago, Stewart and Gillian Evans, who were FPP Advisors at the time, first came into contact with Sihao, who they affectionately called “Farm Boy.” This is because remembering Chinese names can be challenging as they are often made up of three to four Chinese characters and the sounds are anything but familiar.
At the time, Sihao would have been preparing to enter his first year of middle school. Even though his cerebral palsy had caused his physical condition to decline over time, he had been able to attend a regular school because of his mother’s love and devotion to him. At this point, three years ago, he was still able to walk with some difficulty. Stewart and Gillian could see where this was progressing and recommended the family to allow Sihao to begin using assistive supports and, at times, a wheelchair.
A Mother’s Desperate Love
It is common for a family raising a child with a disability to go through a progression of Denial, Bargaining, Desperation, and Depression. At this point, his family was squarely in the middle of Denial and Bargaining. As a result, Sihao’s mother was quite resistant to him using assistive supports of any kind. She wanted to preserve his independence as long as possible. Fast forward three years, and his situation had indeed become more serious. Now in his final year of middle school, Sihao’s classes are on the top floor of the school. Each day, his mother pulls him in a cart behind her electric bicycle several kilometres to school and then hoists him up four flights of stairs to participate in his classes. She must be present to assist him in using the toilet and when he has other needs requiring mobility. He has minimal strength in his legs and she is virtually carrying him wherever he goes. But he does have strength in his upper body.
Cross Care Team Home Visit
We took our Cross Care Team to do an assessment in late 2019. In addition to our local physical therapist, Rachel Pitt and Juanita Pretorius (both international volunteers and occupational therapists) also came along to provide their support and expertise. We visited both Sihao’s school and the family’s residence. Our team devised a plan to provide the following support: A shower chair, a toileting chair, the installation of railing to facilitate his independent movement, and a wheelchair to be used for getting around the house and courtyard.
The day we went back to assemble and install these devices was a perfect day. The sun was shining and the families’ hearts were prepared to receive all that we were able to offer. It had taken three years for his mother to get ready, but the good work that was begun by the Evans was finally being implemented.
I’ll never forget the joy on Sihao’s face when he realized that with these new pieces of equipment, he would be able to shower, toilet, and move about independently.
“I knew his mother’s tired shoulders would also welcome the relief. As this experience has taught me, independence is not a right—it is a gift, that brings freedom and joy not just for a child, but for her parents as well.”
Thank you for the instrumental role you play in making perfect days like this one possible.
As the lockdown eases in China, FPP has begun to resume home visits in June. We look forward to updating you with Sihao’s progress!
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