My daughter is three and a half, and recently we’ve been having her assessed due to some concerns about what we thought might be a language delay. That process has led to the significant possibility that she will be diagnosed with autism (the medical jury is still out).
This has left me with a lot of thinking to do, as I’ve struggled to come to grips with what it might be like to parent a child with special needs. I always – based on the strengths of my husband and me – imagined that our child would be bright, an academic achiever, someone who loved to think analytically and debate big and sometimes abstract ideas. Someone who lived in books and found that language came naturally (quite possibly more than one language). Given the typical struggles of people on the spectrum, that mental picture of mine is likely to change.
One big question I had to grapple with was, if my daughter didn’t have the sorts of gifts I had imagined would come naturally, if she even found that her developmental delays added up to significant disability, what would my focus as a parent be? What did I want to give her, as the non-negotiable birthright of a human being, made in the image of God? What did personal wholeness look like for someone “different,” and how could I nurture that?
I sat down and jotted a short list of what I thought the basic bedrock aspects of personal wholeness – wholeness as a human being, regardless of ability or disability – might be. I also hit up the journal databases to see what others had said, and was pleasantly surprised that while they fleshed out some of the items on my list, they seemed to affirm that I was thinking along the right sorts of lines. Here’s what I came up with:
– A realistic sense of worth; one based not on external achievement but on the value and dignity of every human being, made in the image of God.
– Ethical/moral integrity. A coherent ethical framework, (or, as some of the articles I looked at put it, a well-formed conscience). An ability to approach the world with a sense of confidence in one’s ability to make choices in an ethical manner.
– A meaningful network of relationships. In this I’d include family relationships, friendships, the ability to navigate the wider community, and a relationship – if she wants it – with God. One of the articles I read also suggested that part of this is the ability to connect with one’s culture and traditions, and while I’m not sure I’d give that quite the same level of importance, it’s certainly given me food for thought.
– A sense of purpose. This is perhaps the hardest one for me to put into words; it has something to do with hope, and something to do with values (by which I mean, valuing something enough to want to invest one’s time, interest, energy, and/or money in it). But a sense that one is not just a passenger in life but a participant, and able to contribute to something worthwhile.
I don’t know yet how to nurture all of these things effectively. I’m learning as I go on this parenting journey! And if my daughter does have autism, some of these things might look very different for her, than they do for the children around her. But I’m okay with that; I think identifying these things as important is a good first step. As a family we can navigate the next steps together.
The truth is, autism or not, I’m immensely proud of my daughter. She’s inquisitive, determined, sensitive, happy, affectionate, full of beans and beautiful. She already sings in tune, draws and paints for hours, and perhaps her gifts will lie more in the creative sphere than mine ever did (heaven help me, I’ll have to learn how to nurture that too)! And I am determined that whatever life brings her she will have every ounce of my support, encouragement and care. Thinking ahead about what she needs and how to meet those needs is part of that, but it comes with great joy as she grows into new skills and confidence.
What do you think? Did I miss some important aspect of personal wholeness? Is there something else I should be thinking about as well? Or do you think some of these things don’t matter?