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Rate grandmother Shirley in the Caregiver domain. Three-year-old Ethan lives with his maternal grandmother Shirley. His mother is diagnosed with Fragile X Syndrome (FXS) and schizophrenia but due to the challenges of her FXS and not adhering to treatment recommendations to manage her schizophrenia, it was determined that Ethan was not safe in the home and Shirley agreed to care for him. Fragile X Syndrome is a genetic disorder which Shirley also has, but her milder symptoms do not impact her ability to care for Ethan. With a family history, and because Ethan shows many of the symptoms, his doctor recently tested him and confirmed he also has FXS. Shirley is struggling to adapt to Ethan’s arrival and is stunned by all the behaviors she has seen. She has had 5 children and knows how to care for young children, and she even understands the symptoms of FXS because she learned about it when she was diagnosed. But she has never seen a child who is constantly moving like Ethan. From the moment he arrived, he was never still: walking with jerking movements as he navigates the house; hand flapping or toe walking as he walks outside the home, causing others to stare; always rocking himself whether sitting on a chair or standing. He has difficulty with fine motor skills that impact his ability to do simple tasks like zip up his coat and he seems behind the other kids in his physical and cognitive development. Shirley describes Ethan as “slow” to comprehend what she is saying, and she often must explain things over and over to him which she said tries her patience greatly. Ethan is also struggling with the transition to grandma’s and any and all unexpected changes. Shirley states that Ethan has a tough time adjusting to his bedtime routine, resisting getting into the tub or brushing his teeth. He is not sleeping through the night, interrupting his waking and breakfast routine, and causing him to need multiple naps during the day. When Shirley suggests they do something Ethan is not prepared for, he gets really anxious and will scream and cry at the slightest change. Ethan has just begun attending a specialized daycare and is having difficulty adjusting to that routine. Shirley shared that over the last 6 weeks, there has been at least one day a week where his resistance to going is so bad that Shirley gives up and lets him stay home. Even with his non-typical behavior, Ethan has a calm temperament and a mostly positive affect, and once people get past his behavior, they find him to be sweet and playful. He will play comfortably near anyone and will acknowledge anyone who speaks to him by looking up and smiling; he can also carry on basic conversations though his language acquisition is delayed. While he does play, it is rigid: he treats all toys as bricks and tries to stack them. When things fall, he seems surprised and begins to cry. After a few times of this, he gives up and turns his focus on something else. This behavior is typical for Ethan when faced with a problem or a challenging task: he gets frustrated, cries, and stops attempting it. Shirley requires some help with meeting needs related to lack of access to the internet and childcare on the days Ethan won’t go to daycare or when going to her own medical appointments. She has been a support for her daughter but does not have her own support system. Shirley asked the caseworker to be linked to some resources because she doesn’t know where to begin, but she knows that Ethan needs to begin school and meet other children. Shirley wants the best for her family, but she admits that she finds it difficult to connect with Ethan, nor does he seem connected to her. His strange symptoms confuse her, and she doesn’t understand why his transitions are so difficult and why he gets “frustrated so easily by nothing.” While she does try to soothe him when he gets upset, she also has limited patience, and eventually she’ll tell Ethan to go back to playing and she will do something else. She is willing to care for Ethan as long as is necessary but is looking forward to her daughter “getting it together” and taking Ethan home. 01:40:34 Section: #7 of 7 Previous Section Finish Caregiver Needs and Resources Rate Shirley (GM) 0. No evidence of need. No action needed 1. Significant history or possible need that is not interfering with functioning. Watchful waiting/prevention/additional assessment 2. Need interferes with functioning. Action/intervention required 3. Need is dangerous or disabling. Immediate action/intensive action required 0 1 2 3 1. Medical/Physical 2. Developmental 3. Mental health 4. Substance Use 5. Caregiver Adjustment to Trauma 6. Legal Involvement 7. Self-Care/Daily Living 8. Organization 9. Supervision 10. Resourcefulness 11. Problem Solving 12. Family Stress 13. Caregiver Emotional Responsiveness 14. Residential Stability 15. Financial Resources 16. Safety 17. Informal Supports 18. Transportation of Child 19. Knowledge of Condition 20. Care/Treatment Involvement 21. Family System Engagement 22. Accessibility to Childcare Services 23. Access to Technology rate shirley

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