Living with physical challenges

Sarnelli House has an increasing number of physically and intellectually challenged children in its care. There are four children who live at House of Hope, none of whom are verbally communicative and who are unable to walk. Their physical needs are cared for around the clock by the house mothers at House of Hope. And while it is essential to meet their physical needs, they also need stimulation and emotional care. What the housemothers lack in expertise they make up for in patience. Much of the stimulation during the day comes from the other children. The noise and chatter and singing and movement catch the attention of the disabled children and they smile and laugh as the noise gets louder. Spontaneously, children will lie down on the mat with one of the children with disabilities and hug them or talk with them. Some of them get so carried away they hug them tight to themselves while lying down and do what is known as the crocodile roll with them. A quick rescue by a housemother whereby disentanglement reveals both children laughing delightedly.  However, a constant eye has to be kept on them as they do not know their own strength or the weaknesses of the other child. 

Mary is not able to hold her head up, nor sit up unaided. She has trouble grasping objects in her hands, but she can roll over and she pulls herself along the floor by digging her elbows in and dragging herself, while her flaccid legs trail behind her. Mary has the most divine smile and she loves one of the older grandmas who does the laundry. Grandma is warm and encompassing and Mary is never so happy as when she is enfolded in her secure embrace. Jodie is slowly learning to sit up unaided, but she is like a top-heavy skittle and she folds down when not supported. She cannot crawl or move herself along the ground. She has a big toothy grin and she smiles and claps her hands to herself and is quite self-contained and content. Mary and Jodie take it in turns to sit in their wheelchair and they are planted smack bang in the middle of the mayhem and they love it. Normally they would attend the occupational therapy unit at Nongkhai Hospital weekly, but because of the Covid 19 situation they haven’t been able to for the last six months. A customised bathroom has been built for these children so as they grow older, they can be showered on a mobile canvas stretcher with holes in it to drain the water. Both Mary and Jodie and are not yet three years old, and hopefully their physical situation will improve, but it is unlikely they will be able to walk. Titan, who is only 12 months old, has identifiable brain damage from lack of oxygen at birth and so far his movements and responses are very slow. He also will need extra care and stimulation but to what extent he will recover is now yet known.  Nuna is now 12 years old and wheelchair bound as well as blind and mute. Her limbs have contracture from her immobility, but she can sit in her wheelchair, and she loves the sound of the children around her as well. She yells unintelligibly when she needs a change of position or is hungry. Nuna is living with HIV as well and has never been able to chew or take food from a spoon. All her food is pureed and given via a baby bottle. Nuna responds really well to movement and loves being pushed around in her wheelchair, particularly enjoying the physical sensation of the wheels going over any bumps or small stones. Whenever it is time to take any of these children for a walk in their customised buggies, a line of toddlers comes along, often competing to hold part of the chair to help their sisters. All these children have to take regular medications as well, which is another facet to their care. 

At House of Hope, there are also children who are not living with physical challenges but are certainly intellectually challenged. In fact, at Sarnelli House, there are at least ten children who have been identified as having learning disabilities and have a special government card to identify this. Some of these kids were born with HIV. The growing number of small children arriving with these challenges presents its own challenge to the staff here. Sarnelli House has seen this before of course, as it was founded to give refuge to dozens of children living with HIV, when nobody else would help them. There were no easy answers then either as access to antiretroviral treatment was non-existent and Thai society shunned the sick. Similarly, the steady stream of abused children has required the staff to adapt their care over the years. If, as seems likely, the number of children living with disabilities, particularly physical, being referred to Sarnelli House begins to increase, then Fr. Mike and the senior staff will have to explore the idea of building separate, more suitable accommodation. This wasn’t part of the strategy, but Sarnelli House has always responded urgently to the needs of the most disadvantaged and most neglected and will continue to do so.


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