I always embraced having a child with
a rare condition. With every year I dealt with what was put on my plate. I had a great support system within the school district we were in. Elementary, middle school, and part of high school was in NY. We then moved to Florida and my daughter completed her 10th, 11th, and senior yr in our local high school. I knew at some point I wanted my daughter to have some autonomy and I also knew I needed to let go of the reigns and find a place that she could live in that she would like and feel more independent. I was lucky enough to find a group home near my home through a program called JARC. When she turned 18 this past November I moved her into this new place and she’s been doing well. I am still very involved…how could I not be, but it gives us both the space we need. I know I will not be here forever so as a planner by nature I wanted her to be set up for her next chapter in life. It was not an easy decision and I felt very bad doing it. My daughter whose name is Avery has a syndrome called Williams Syndrome. She will never drive nor will she be able to live independently. As a parent it’s one of the scariest notions of what will happen to our adult children once we are gone. So I realized this was the best situation for her. Now I have to deal with changing her day program at the high school she attends. It’s a post senior program that includes work sites for these young adults. However the person who is in charge of it is a very big problem and my daughter can no longer attend. Unfortunately there are educators out there that don’t get it. I have been fortunate so far that I have had fantastic experiences but this last year has not been that. So now I will start that process. It’s not easy but it will get done. I know as a parent it never ends but as a parent of a rare child it is way more intense and involved. It’s a different situation that I know my fellow moms get.
Samantha,
Welcome to our Warrior Mom’s Living with Rare Disease forum. I am glad you found us and trust this community will be a support to you as you support your dear daughter. I am sure this step you took to give her a degree of independent living was a challenging one for you as a parent. We trust this change in her life will prove to be benefit and blessing not only to her but to your family. Thank you for being there for her amidst the difficulties that a rare disease presents. Once again a very warm welcome.
Mark, ModSupport
Thank you so much Mark. I really do appreciate your words!
Welcome Samantha! Glad you found us. Sounds like you were well prepared for the process. I was counseled early on that the ideal was sadness that they are leaving but knowing they must AND ar the same time the kiddo being sad to go but knowing they must.
How did you handle guardianship and SSI payee?
I with her father filed for joint guardianship. We found an attorney to guide us through the process and we finished everything after about 5 months. As far as the SSI. I am still waiting to hear. Everything was filed a month after her 18th birthday but I was told it can take a while but will be retroactive when it does come through. Thank you for the positive words!!