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Meet a Child with AS

Meet Ally!

GEMSS would like to thank Ally and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

 

Ally has led a busy and fun life in her six years! As a kindergartener in New England (USA), she loves playing with her bother and friends, pretending with her dolls, and watching her favorite princess Belle from Beauty and the Beast. 

Ally loves her school and was invited to her first birthday party recently. Her friendships extend beyond the school and it is not unusual for Ally to be approached by friends, whether she is on a playground or picking apples out in the country. She really connects with them and they know her excitement to see them is genuine! 

Ally is fully included in her school with therapies woven into the natural routines of the classroom. She uses a communication device which has been a great tool. Her team is continually exploring other communication devices that might broaden her expressive abilities to become more spontaneous and more reciprocal in nature. Ally has thrived in the school with the support and dedication of her team. 

Ally’s big brother Josh helps program Ally’s communication device, lends a hand when she is walking, and plays games with her. But no free ride for Ally – Josh makes sure she plays by the rules of the games! 

Ally was diagnosed with Angelman syndrome at 11 months of age after having some feeding difficulties as an infant and, later, with reaching some of her developmental milestones. After a short stay in the hospital, they learned of her diagnosis. She is deletion positive. 

Ally’s mother advises other parents and teachers to remember that “Kids are kids first, they are not a diagnosis. They have high receptive language skills and understand everything you tell them!” She urges full inclusion and therapies in natural settings. She feels children who have Angelman will thrive by being with other children and learning from real social interactions. She also urges parents and teachers to “go with the strengths of the child – start there in play and use their strengths.”

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