Sunday, April 3, 2011

Why Home?

I got a great question from Carrie in my comments section regarding the post about Tuba's future. She wanted to know why we wanted Tuba to live at home versus a group home. Good question. Here's our answer. Tuba does not talk...not conversational talking. He does say dozens of words that we understand but he does not have the capacity to talk to us in detail or sentences. We feel very protective of Tuba and feel that if anyone were to hurt him or treat him badly he would not be able to tell us. I do NOT trust that Tuba would be safe outside of our care. Also, we enjoy his company and would miss him terribly. Tuba will not ever be able to hold a job on his own or ride the bus. He is very much like a toddler who has to be looked after at all times. He does not understand safety issues at traffic, dangerous situations, etc. I know there are group homes for people such as Tuba but do not want him to live there. I want him with us. His siblings talk about how they will take Tuba for visits with their families when they are Mom and Dad can go to Hawaii alone. :) I do want to say that I believe there are many good group homes out there. I have an Uncle with Down Syndrome who has lived on his own as an adult and thrives with the help of the staff. We have another friend with an adult son who lives in a group home. This man is much more disabled than Tuba and his placement was right for his family. It's a personal decision up to each family and each situation.


  1. Thanks, Becky. (It is Becky, right?) You have given us some things to think about, although we have quite a few years to go. I really appreciate your honesty.

    Another question, do you have any suggestions for books for us to read with our other kids to explain about our daughter's special needs? Our 4 children are ages 9, 8, 6 (our SN daughter), and 5. Sometimes I feel like we stumble over what to say and how to word it with our other children. Even the 5 year old can see that he is already quite a bit beyond his sister. (The other 3 are all boys.) And maybe it would give us some ideas of what to share with young cousins, too, or other children if it comes up. Things like "why can't she read yet? Why is she doing that, etc.?" Any suggestions you have are greatly appreciated.

    Also any online resources you recommend. Thanks! Again, if you would prefer to email me, that is fine.

    Carrie T. -

  2. And when you are no longer around?

  3. What is the plan for when you and Cam aren't around anymore?

  4. Becky, I could not agree more with you pertaining to Connor (Tuba). Conner and your family is in my prayers



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