Q. What happens to adults with Down syndrome when their parents can’t look after them any more?
answered by Jodie Bishop
Just a short back story here. I am the 3rd child of 6 kids. My mom had a stillbirth of her 5th child and my sister Kathy, is her 6th. Kathy was born with Downs Syndrome. They attempted to talk mom into placing her into a home (this was in the 60’s) telling her my sister would be a vegetable never walking or talking. My mom refused to believe them and brought her home to us 4 remaining kids.
As a family we raised Kathy teaching her how to talk. Our German Shepherd always wore a harness rather than a collar and he would sit in our backyard with Kathy for hours. He’d sit next to her and she would grab hold of his harness and he wouldn’t move til she was standing and steady. He then would walk around the yard with her holding onto him. If she fell, he sat til she was ready to go round again. They did this for months til eventually Kathy began walking on her own.
She attended the special school here in town, graduating at 26 yrs old. VERY proud moment for all of our family-both immediate and extended as everyone has grown to love her.
Fast forward…Kathy is 49 yrs old and my mom is dying of cancer. My sibs have all moved out of state except my brother and I. Needless to say, my brother isn’t really equipped to handle caring for my sister. I’m a retired nurse so for me it’s not a problem. My sister that lives in NC and I need to decide what is in Kathy’s best interest. She has ALWAYS been with my mom. An adult foster care or extended living would confuse her and slowly depress her and we felt would be the beginning of the end for her. That would not be the correct thing for her.
I live 5 min from my moms house. Even on the same road. As my mom’s health began to rapidly deteriorate we decided that Kathy should not be in the house watching my mom slowly pass away. The decision was easily made that Kathy would come live with me and my family. We had the extra bedroom and she would not have to leave the only town she has ever lived in. Originally, my mother’s wishes, were to have her move to NC to be with my oldest sister. After lengthy discussions with my mom and my sister we felt uprooting her ESP while grieving the loss of our mom may be too much for her at once so staying with me was the best option.
This was September 30, 2018. My mom passed away on December 14, 2018. Kathy has adjusted extremely well living here with me and has handled my moms passing prob the best out of all us kids. Before mom got sick, they attended church regularly and Kathy has become extremely religious so explaining my moms passing to her wasn’t as difficult as we thought it was going to be. Now that moms gone, she refuses to go to church now, but her bedroom looks like a religious shrine..lol. Occasionally she will ask why mommy had to die, and I’ll remind her of the cancer my mom had and then she will be ok again.
When going to court to obtain guardianship for her, due to the fact that my sister and I are sharing guardianship of her, the judge was extremely impressed that there were 2 of us “stepping up to the plate” he said. He said normally they have probs finding ppl to take guardianship over special needs adults and here he has 2 siblings that are coming forward WANTING to share guardianship. This made me sooo heartbroken and sad to hear that even here in our little town in Michigan, there are ppl that turn their backs on family members with special needs cuz they don’t want to deal with them!
We absolutely LOVE having my sister here!! She is fun, funny, helpful, and has the biggest heart of anyone Ive EVER met!! I wouldn’t change ANYTHING we’ve done!! I just have a hard time thinking of what it would be like without her here or in a home somewhere… I could NEVER turn my back on her! She’s my blood and my baby sister-how can ppl do that??? Is that how selfish ppl have become?? How disgusting!!! 😱😱😱
source : Quora