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Meet a Child with TS

Sophia's  Story

GEMSS would like to thank Sophia 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!

Sophia riding a bikeSophia, age 6, is having an “incredible” year at school states her mother, Elisa.  She is in a regular classroom and has a paraprofessional supporting her. After hearing that she may never speak, they are delighted to hear her speak with clear words, using 3-4 words in full sentences.  At school and home, she uses an iPad which helps with spelling and practicing writing. Sophia is quite social and seeks out certain people. She is included in regular class activities and it works well when “everyone works together.” Elisa feels that Sophia’s team is so invested and genuinely interested in helping Sophia reach her full potential. 

Sophia was diagnosed with Tuberous Sclerosis at sixteen months of age. 

Sometimes, Sophia gets frustrated when things don’t go as planned. She has behaviors that might frighten other children, such as screaming when she is upset. This particularly may happen after a seizure. Her behavior can make it harder to get out in the community. As more supports are put in place, life gets easier for Sophia and those around her. For example, a behavior specialist has been visiting with Sophia’s family to teach everyone how to deal with the negative behaviors, how to keep people safe and how to provide strategies  to avoid or lessen these girl with blond hairoccurrences in the future.  A weighted vest at school has also been a good sensory support for her. 

Sophia lives with her sister and parents in the United States in a rural area near the Canadian border. Family is not very close by but the family gets supports through Respite which “is a Godsend.” Sophia spends “Tuesdays with Terry” and Terry’s family has developed an extended family in their household. Family Support has also been excellent in helping figure out funding issues. Sophia’s sleep issues make it difficult for the family at times. Her behaviors used to be more self-directed, however, have become more outwardly directed over time. The family has created a great play space for Sophia so that she can have a quiet place when she needs it. Elisa’s advice for other parents and teachers is to learn about TS and to be open to suggestions and discussion. “Being in regular classes has done a world of good for her.” Sophia gets to see how her peers act socially in many different environments. Doing this has enabled Sophia to grow in many areas personally and socially. 

There is a Seizure Action Plan in place which is supported by her medical community. Elisa advises school staff to talk through changes, to talk through new ideas, and to talk through proposed strategies with parents. For example, having Sophia carry a big backpack full of supplies on an outing really would stigmatize her as no one else would have to carry a pack. Talking it though helped the team come up with acceptable alternatives. 

Being a parent to a child with Tuberous Sclerosis, Elisa has learned something very valuable she would like to share. “Don’t think you know their potential. They can surprise you!”  

 

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