Just Like Jack

When I went to the meeting last month at the DS Association about teaching kids with DS, one of the first things Bridget Murphy said was, "I am here to tell you how to help your child be like Jack (her son)."

I couldn't help but immediately get a little defensive.

I don't like it when someone tells me how to be. I don't like it when I am told what my goal should be when it's something so objective as that. It took a few minutes for me to step back and tell myself that she didn't really mean it quite like that, and that she did have some valuable things to share that were worthy of my time and attention.

What Bridget was referring to was their family's goals for Jack: to live independently, to have meaningful employment, and to have a satisfying social life. She wanted us to see that those things are possible and that a child's schooling and preparation should be considered through the lens of those goals.

I have to admit that that was one of my very first fears: that Justin would never leave home. I have always imagined the glorious retirement years: traveling and frolicking like only a woman who has put in her time at a job and raising kids deserves. Pretty shallow, I know. But it was there none the less. I felt that being ripped away in the instant we learned about Justin. I felt like I would be parenting at a fairly intense level until the day I died. Truly.

It didn't take long for me to move through the following stages:

1. It's not quite the life sentence I imagined.

2. It might actually be pleasant always having family around.

3. Leave? Justin's never leaving me!

So silly!

I am still not sure what to think of Bridget's goals. They are basically the same goals I think we have for all our children, but at a more basic level. I expect both of my children to have some sort of employment, Travis probably more gainful than Justin, but still work. And Travis already has an active social life! Justin gets cuddled and adored equally too.

But the living thing still leaves me wavering. I have talked to people on both sides: adults with DS still living at home and also ones on their own. Living at home is an advantage for both because as parents age the person with DS can help with things in the home that are physically more challenging, making it possible for the parents to live independently longer. And for the adults with DS living independently, it's often in a group home, or someplace with some extra support so they have a community of friends with whom they share life.

I don't think that is something I need to worry about now. I plan to teach both of my boys the same things: service to others, compassion, forgiveness, generosity. And I'll probably throw in a little math, reading, and writing as appropriate!

I don't want my sons to be like Jack. I want them to be like Jesus. I think if they achieve that goal, the rest will fall into place. I don't think I need goals like independence or socialization. I want them to be loving and kind above all else. Where they live and who their friends are will take some figuring out later. I am okay with that.