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Down Syndrome Community
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Avatar universal

Uncharted Waters

My sister is 17, she is non-verbal, low functioning, has behavioural issues, sleeps all day, doesn't listen to her Mom or Dad, disconnected from the family and aggressive. Hasn't been to the doctor for a year because she wont listen to my Parents when they ask her to leave the house she throws a tantrum and hits them. But you must know she hasn't always been like this, she is the victim of living in a house of abuse. For four years my Dad verbally and  physically abused my Mom. That was a horrible time for our whole family, we are in the process of healing form this time. The one that has been missing out on this is my sister. My sister has down syndrome and she has truly fallen victim because she lived in a toxic environment for so long. She has stopped talking and grown into throwing tantrums, wont listen to my Parents and shuts herself off from the world. My family and I are at a crossroads not only healing from the abuse but also with Elle. This past year when I would come home to visit it was obvious my parents needed some extra support for Elle (outside help is out of the question at the moment) Elle is honestly too tough that unfortunately her behaviour would turn people away. Which is why I approached my Parents with this idea.... I worked with Elle for the next year and get her on track so that a caregiver can come in at the end of that year and replace me and continue to develop Elle. I wont be going at this alone, her doctor and I have already lined out behavioural specialist who we would meet with Elle diagnosis her and provide techniques to help and heal Elle.   Has anyone out there done this? Stepped in as a sibling and turned into a caregiver? I am scared because I don't know what to expect but excited because for Elle she needs this, she needs a consistent person who will work with her everyday and get her on schedule and grow! My fear is that if we don't work with Elle now, ten years from now, she will be further disconnected from our family and will grow to become more non-verbal and more aggressive. I am reaching out to because it would be wonderful to hear some stories, get some advice and support. One item to note: My sister is 17 I am 27.
Thank you!
2 Responses
Avatar universal
I'm so glad your there to support her when she needs it. Your a selfless loving big sister and you should be proud of what's you are going to do. Can she do many things for herself like how are her independent living skills. Or has she always ha your parent to do it.
Avatar universal
Its so nice that you are willing to do this for your sister. You are right when you think about 10 years down the line. Even though she is 17 its never too late to start. I wish you all the best and pray to God for you and your sister.
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