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Why We Plan For Independent Living For Our Disabled Children

Alethea Mshar
Special needs mom and Blogger
08/12/19  2:38 PM PST

Life is unpredictable.

My husband has been hospitalized for carbon monoxide poisoning twice in his life. Other than his family, who were all involved in the first incident, I don’t know another person who has had carbon monoxide poisoning, yet he’s had it twice. That’s just one reason we recognize how important it is to a plan for when we’re no longer here. And because we have two children with intellectual disabilities it’s a huge challenge.

It felt good and even comforting to think of him accompanying us into old age. 

When our son Alex was diagnosed with Down syndrome shortly after his birth, we settled into a quaint notion that he could just live with us his whole life. It felt good and even comforting to think of him accompanying us into old age. Yet as he’s grown, we realize just how limiting that quaint notion is. Alex doesn’t want to be our tagalong. He has goals and vision for his own life, and none of them look like hanging out with mom and dad well into middle age.

Even if Alex was content to live at home, my husband’s carbon monoxide experience reminds us that we can’t count on being here to provide it for him. We’re both healthy and active and young, but youth is fleeting, and our bodies already tell us that they won’t keep doing what we want forever. As we prepare to launch our daughter into college this fall, with all of her goals and dreams ahead of her, including living on another continent, I know that we cannot ask her to pause her own life to step in when the inevitable happens and we can no longer care for our disabled children.

The biggest reason of all that we have bigger dreams for our children is simply that they have bigger dreams for themselves.

Our boys are teenagers now, and we are planning for their adulthood. We haven’t nailed down exactly what that will look like, and it won’t be a simple scenario of graduating from high school and moving out. The process will take years, and will require support of our Community Mental Health services. 

The biggest reason of all that we have bigger dreams for our children is simply that they have bigger dreams for themselves. Alex has a goal of living in an apartment and having a job. Who am I to insist that he belongs at home with me? Instead I will join him in his vision for his life. Ben’s needs are different yet, having more severe intellectual disability and complex medical diagnoses. We will work with Ben on developing plans to meet his goals and needs as he matures as well. 

Empty nesting won’t follow that usual plan, but we’re committed to making it happen. And I’m thankful for a community in which we can bring it to fruition.

inclusion on the playground

Alethea Mshar is a Special Needs Mom and Blogger.

Read her blog, Ben’s Writing, Running Mom

Follow her on Facebook

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