what if my special needs child lives with me forever?

what if my special needs child lives with me forever
I love the site, Not Alone. You can understand why just by the name alone (Ha!). Sometimes when we’re riding the special needs bus we feel alone. We feel no one else really gets us, our child, or our family. This is one great site that supports parents who feel such.

Todays post is on the shorter side, but that’s because I would like you to read two posts. I know I’m so mean!

On Not Alone, Ellen Stumbo wrote a perceptive article called, What if She Lives with Us Forever? Some of you face the possibility that your child will live with you forever.

We faced the reality about a year ago that Jeremiah will most likely live with us through his adult life. At first the idea was overwhelming. Typical parents sort of expect their children to grow up, move out, and then it’s the parents turn to play. Not so much when you’re a special needs parent, but I still struggle with those selfish feelings of wanting more “me” and “us” time.

Special needs parents are always on alert, there is rarely down time.

I do need more supports, and we’re working on it, but my view of Jeremiah living with us forever has changed. I feel a lot like the woman who wrote this article. I actually want him to live with me…IF that’s okay with him. 🙂 I adore him, I don’t know what my life would be like without him near because so much of it is enveloped in him. Selfish reasons I know.

It would be awesome if he was able to function in society, get a job, live alone or even better, find someone to love and spend the rest of his life with. That would be awesome! But, I can’t depend on that happening. This isn’t the typical life. And that’s okay!

Here’s what Ellen Stumbo writes on Not Alone, I can just about guarantee it will buoy your heart.

“Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, ‘Will she live with us forever?’

When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born? But with Nichole it was different, Down syndrome rocked me and I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job…

I hope she still wants to do this with me when she’s 15, and 21, and 30 and forever.”

You can read more of what she wrote here.

Do you think your child will live with you forever? How do you feel about it? I hope todays post encourages you. Have a good one!


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4 responses to “what if my special needs child lives with me forever?

  1. I’m a fan of both Not Alone and Ellen Stumbo, too. She’s not afraid to tackle hard subjects and find the light in them. Thanks for linking your post to the DifferentDream.com Tuesday link share.

  2. My daughter is developmentally delayed. I was told she would eventually live in a group home, and eventually she may. But my goal–always my goal–to help my daughter live as typical a life as possible for her. She is now 34 and has lived independently for 14 years. Yay! I love my girl too, but I often revert to parenting her when she is near. Although that isn’t the role she wants me to play any longer. Unless it is on her terms. My daughter is now married. She has a part-time job that she tells everyone who will listen, “I work full-time, two hours a day.” Wouldn’t everyone like to have a gig like that? Anyway, hope you’ll stop over and visit Out One Ear when you get a chance. Living independently has not always been a bed of roses. There is heartbreak in this journey, but their is heartbreak in our typical son’s journey too. We can’t prevent heartbreak. It’s part of life.

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