SFS team meets Kristin, a Norwegian photographer

It was on a rainy afternoon when we met Kristin and her husband to visit the homes of the families that she assists with children with special needs. The families that we visited faced an array of problems. Some of the children were experiencing behavioral issues which affected the children’s performance in school, others had suspected pragmatic deficits. However, out of all of the families that we visited, no story was more touching than that of the family of the teenager we encountered with Coffin-Lowry Syndrome.

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Coffin-Lowry Syndrome is a rare disorder caused by a mutation of the X chromosome, which results in severe cognitive deficits and craniofacial abnormalities. This teenager was supported by the love of his single mother who also was the sole provider for his younger sister and grandmother. This child was nonverbal, but quite social. He made numerous attempts at communicating by pointing, gesturing, and grunting. He had never received any previous formal education as the only service offered to his mother was placing him in an institution for children with disabilities. Despite these setbacks, his mother works with him individually on fine motor skills and refuses to give up hope for her son. His mother fears for her young daughter as her son his extremely loving, but can sometimes get violent if he does not have access to the medication that keeps his behavior under control. His mother also reported difficulties with feeding her son. With so many of her son’s needs unmet, we thought of a plan to make an impact in the life of this caring mother’s teenage son. 
 

To facilitate the son’s communication needs and capitalize on his willingness to initiate communication, we decided to provide him with a simple low tech communication board to express when he is hungry, thirsty, and tired. We also provided his mother with some pediatric feeding tips to help alleviate some of her son’s difficulties with chewing, which were compiled in a packet of information with tips and strategies to help build upon the communication skills that he already has in place. We look forward to hearing how he progresses after using the communication board in conjunction with the feeding and communication strategies that were provided to his mother. 

Who could have ever imagined that spending such a short amount of time in a new city could have taught me so much. Before going to Cuba, I was so excited to be a part of this organization’s mission to spread smiles to the children of Havana. However, it is important to note that while we were able to make an impact while we were there the resilience and the demeanor of the people of Havana is something unremarkable. 

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 As SFS continues to develop and make an even greater impact as a nonprofit organization, we will need to raise funds to provide more materials for the children that we’ll be helping. SFS will be planning a third mission trip in 2018. Keep your eyes open in the coming days for details regarding opportunities to participate in our future fundraisers.  We can’t wait for what’s to come in the new year. A sincere thanks to all who helped support us in this journey. We couldn’t have done it without you!

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Jendayi, Smiles for Speech Volunteer and Graduate student at Columbia University

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