Caregivers | Last Active: Apr 26, 2017 | Replies (27)
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My story of caregiving is having a baby boy. My husband and I were very happy. But over time he didn’t develop. The doctors started calling my son “developmentally delayed.” At the time it didn’t mean anything to me. Delayed means that eventually you catch up. But for my son he just didn’t develop like other children do. Then social workers started to visit me. And they used the term “failure to thrive.” I didn’t know what that meant either. Then people came over with instructions for how to communicate with my son. They showed me diagrams and gave me tips. Then I found out we had a staffing at child protection. That’s where social workers invite pediatrician, social workers, and parent to a meeting. They say failure to thrive is mother’s fault. Something about mother’s communication style. So I went to meeting and found out they were blaming me for son’s development. That hurt. But pediatrician said its the child, not mom. Then I eventually took son to Mayo Clinic. Diagnosis was Williams Syndrome which is genetic abnormality with small size and developmental delay. Lifelong support necessary. So that solved problem with child protection and failure to thrive. But then I had new problem called developmental disability. My son wasn’t going to catch up. So I have been caregiving for my son for 25 years with no end in sight. I can only survive day by day week by week year by year. I made another post in caregiving about hoping son can have opportunity to work on job crew and not get restricted to center. It seems like so much effort is needed to just get the smallest thing – an opportunity to be in community with everyone else.