Dear Friends: It’s Not You, It’s Us

Dear friends,

Week in and week out, you invite us over to your house. And week in and week out, our desire to be social is then met with a complex calculus of decision-making:

• Will there be enough soft foods for our son to eat?
• Will our son play well with their kids?
• Is there a changing room there?
• How will they react if we need to change a diaper in the middle of the party?
• Who else is gonna be there?
• Can we make a quick exit if things go south?

It’s hard to have a busy social life as the parent of children with disabilities. If we want to go out on a date, we have to be sure that we have a babysitter who is used to the quirks and needs of our son. One who knows that, hey, sometimes a 6-year-old does need to be fed and changed.

But going over to someone’s house conjures up images of reflux issues kicking in, diaper blowouts, and having to bring supplies. Oh man, so many dadgum supplies for a short evening out!

Sometimes the equation is simple: The joy we’d get from going out isn't worth the risk or hassle of getting everything together to go out.

And I know that sucks—not just for us but for y’all. I know there’s no harm intended. And I know that all of our friends would do anything in their power to meet the needs of our entire family. From food to toys to entertainment to whatever. I absolutely know that you want us to feel comfortable. And that the only way to make us comfortable is by welcoming our entire family into a situation.

But like I said, it’s not you at all. It's us.  

Despite having done this parenting thing for a while, we are constantly navigating new ground. We’re always thinking about accessibility for our kids. And sometimes, it’s just easier (if not as fulfilling) to stay at home. Stick to our routine. And when our kids go to bed at 8, we watch Netflix and play on our phones.

Please don't give up on us, though. I know it’s not easy to always invite and not be taken up on it. But we need it. We need to sometimes kick ourselves in the butt, to have faith in our family. To just go out and have a good time. We need that.

It’s just not easy to take that leap of faith sometimes. We still love you and hope that you still love us!

Sincerely,

Your friends

P.S. The Family Support section has good information on self-care and connecting with others. Read up, it’s important and helpful.