Dear Colin?, Mr. Farrell? Fellow Parent, Mr. Great Actor?,
Thank you for your wise words about living arrangements for your beloved son, James, diagnosed with Angelman’s Syndrome. Our daughter Jessica has a rare chromosome deletion (1q43-q44). Like James, she needs assistance with almost everything. Jess moved into her own home at the age of 25. As you eloquently stated in the Buzzfeed article, our difficult decision of choosing a group home was made out of love and concern for her future.
Your quote from Buzzfeed Article
“It’s tricky, some parents will say: ‘I want to take care of my child myself.’ And I respect that. But my horror would be… What if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, …is taken too — and then James is on his own. Then he’s a ward of the state and he goes where? We’d have no say in it.”
Group Home Choice
When we decided to move our daughter, Jess, into a certified residence, it was a painful choice. As parents, we felt like we were giving up, no longer willing or able to provide care. Yes, we knew we were establishing Jessica’s long-term care, a plan for when we couldn’t offer direct protection. Our minds believed it was the right choice – our hearts felt a bit broken. But as you stated, what is the alternative? We knew moving Jessica into a home in our community was crucial for her future and ours.
Your quote from Buzzfeed Article
What his mother and I want is to find somewhere we like where he can go now, while we’re still alive and healthy, that we can go and visit, and we can take him out sometimes,”… He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life.“
That’s Exactly It!
That’s exactly it! We always dreamed that Jess would live as independently as possible and be connected to her community. And it happened! Her housemates have become her sisters, and she has friendships and a community independent of us. And we are still a central part of Jessica’s world—her family. But like you stated, she also has a connected life.
Thank you for sharing your reasons for choosing a group home for your son, James. Although we will never meet and lead widely different lives, we do share the unique experience of raising a child with disabilities.
I have always been a fan of your work, and now I am even a bigger fan of your parenting and sharing your story to help others.
Thank you,
With gratitude and respect,
Vickie Rubin – Jessica’s Mom 💖
PS – In case you are interested, I wrote a memoir about raising our daughter, Raising Jess: A Story of Hope 😉
(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENT)
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There is no place for someone 100% dependent. What happens to them?
Thank you for writing. Our daughter is 100% dependent. The key is finding the right human service agency to support your loved ones needs.
I don’t have any information about your specific case, but there are parent centers all across the country that can help find support .
Excellent.
Thank you, My Sista! You have been there from the very beginning always supporting and loving – XOV
Another wonderfully articulate article allowing us a glimpse into the decisions you & Mitch made for Jess’s future. Such a great and brave example for parents everywhere! 💖
Ahhh Linda – I miss you! Thank you for your beautiful comment – I know you get it! XOV
An act of love! Oh yes! Well said Vickie. I imagine a hard decision but so much love behind it! ♥️♥️😎😎😎
Thank you, Brian – You said it exactly – a hard decision with so much love behind it – Thank you!
Great perspective! Thanks for sharing.
Thank you!!!😊
Love how you shared your parallel stories – preparing for the future plus connecting with community. It sounds like a difficult decision with many good outcomes. Thank you for sharing, Vickie!
Thank you, Wynne. I really appreciate your comment and understanding! ❤️
Gre
Thank you!!!!
Oh my goodness…yes! Not giving up…ensuring the future. This is such an important post, Vickie. Your advocacy and support for parents and families is needed, needed! Xo! ❤️❤️❤️
Thank you, V -I know you get it ❤️❤️❤️❤️
Love and hugs to all! Especially Jessica! 🥰❤️🥰
😘❤️