Child as no other
My child, different than others, classified, handicapped, characteristic.
My child, child as no other.
But yet her uniqueness is not taken for granted.
For quite some time I wasn’t able to express what I really meant by that.
What I did have were many examples of interactions with others who did not meet my perspective of Thirza. Accounts with othrs who, in a blink, put downsyndrome to the front. They see just one thing of her and then she is classified.
Situation: Thirza plays in a toystore. She looks to what’s in her hands, gives notice to where I am and then focuses on her toy again. I feel a proud mom: see my girl, playing, careless, concentrated. And yet, aware of my presence. Than the seller comes up to me: “what a sweet little girl, what a long her has she!”… (mom smiles, seller goes on chatting) “what is she playing sweet, that is so nice, eh, they are always só sweet and calmly playing”. To Thirza: “that’s the special thing about you all eh?”
The soon I am with Thirza, the chat goes about downsyndrome, development and parenting a disabled child. Mostly not initiated by me.
Thirza has downsyndrome
Where is the emphasis
Who .. ? or What…?
Where others are inclined to emphasise on her downsyndrome, I am far more tended to focus on the uniqueness of Thirza.
The clashes that happen in my head during those conversations are quick and even smooth sometimes. The reactions of those people clash with my wish, my tendency and my effort to see Thirza as a unique person of her own. Where I emphasise her uniqueness, my surrounding (both friends, relatives, anonymous persons and professionals) emphasis the typicals of downsyndrome in her. Or better: they see what they think to know about downsyndrome. Sometimes they do see the uniqueness of her, mostly depending on how well they know her.
Thirza is so sweet, like all downies.
Sunshines they are
There is so much potential in them
Oooh, cuddling, yes, they all do that
She looks so much like that other downbaby
Mothers dress their downsyndrome children so nice nowadays.
All notes that classify my child. Her individuality disappears behind her handicap. The who disappears behind the what.
In the picture on top of this blog, the contrast is showed between this who and what of a child with downsyndrome. The first square represents the view of an outstander towards a child with downsyndrome. They mostly see typical characteristics of downsyndrome, in that sense, of what they think they know about down. Sometimes they do see the particular child, mostly depending on how well they know her.
The second square represents another view on her, her individuality is expanded, with a frame of downsyndrome.
None of the squares represents Thirza’s uniqueness.
We cannot separate Thirza from her downsyndrome. It is impossible to tell who she would be without downsyndrome. Downsyndrome colors her. Bring the who into the what and you get a brand new color. The what cannot be extracted from the who. We cannot subscribe her characteristics to downsyndrome, or to her-without-downsyndrome.
I wish people realize this. That they understand that Thirza’s color comes from her nature, nurture ánd her downsyndrome. Her color is different as that of other children.
My own child.