There’s been an interesting online discussion lately about hopes versus expectations for kids with Down syndrome. Like any group of parents, there are many schools of thought about how best to raise a child with Down syndrome. Some advocate for lots of therapies and supplements. Some advocate for a wholly natural environment of few-to-none therapies and just letting life be the teacher. A lot of people fall in the middle.
Full disclosure: I’m relatively in the middle, but tend toward the fewer therapies end of the spectrum. For now, having Rowenna in natural environments is where we’ve seen the most progress, but I am open to the possibility of that changing down the road.
So what’s a hope, and what’s an expectation? Is there a difference? Is there harm in having high expectations? Harm to me, harm to Rowenna? What is realistic? And does that even matter? If I have an expectation and Rowenna fails to meet it – am I at fault? Did I not work hard enough, or is it simply the result of Rowenna’s abilities? And if Rowenna is going to do things in Rowenna’s time, why do we push and push for skills and milestones? (These are just a sampling of the things running around in this head of mine lately – wish I had some answers!)
I think as a parent of a child with a disability there is sometimes the tiniest little check, a hesitation when I think about the future. It’s not the gasping for air, punch to the gut it used to be, but sometimes there’s a little catch in the throat as I wonder “Is it realistic?” This is often accompanied by some momma guilt (Do I have the right to wonder what’s realistic?) and some self-doubt (Do I not believe enough in my child?).
But what it all boils down to is this: every parent has dreams, expectations, and hopes that go unfulfilled because gosh darn it, kids come with their own sense of what they want. And one of the benefits of having a child with a diagnosed-at-birth disability is you get to learn that lesson immediately. We have never done things on my time. We have always done things on Rowenna’s time, and we have seen the future as Rowenna’s future – and ultimately, I think that is a good way to do it.
So in an attempt to sort through this, I decided to sit down and write out a list of my hopes and expectations. After I saw my list, I realized that these lists are universal for what I would want for any of my children, regardless of chromosomes or abilities.
My expectations for Rowenna are thus:
- be an integral part of our family
- be courteous, generous, and kind
- be a good steward of the earth and of animals
- have self-determination and make decisions that affect her life
- be a contributing member of her community, either through work or service
- complete high school, and be a life-long learner in some way
These are things hubby and I value as a family and the things we will instill in our child as she grows.
My hopes for Rowenna are thus:
- to love herself and be comfortable in her own skin
- to find true, lasting love and companionship
- to have a relationship with God of some kind
- to have a job or volunteer position that brings her satisfaction
- to live independently, to have her own space, to feather her own nest
- to participate in our family’s tradition of making music together
These are the things we hope, the things I dream about when I see my sweet girl at 16, 21, 50. These are the things we hope for and expect of her, regardless of chromosomes.
And the rest? The rest – the things I hear and read mommas fret about all over the place – the driving, marrying, college graduating – those are all things that are great if they are things that Rowenna wants. They are things we can work toward – if Rowenna wants to work toward them. But they are not my measure of success and they are not my measure of what make her a fully realized, included individual.