LIFE WITH BABY ZEKE: THE POWER OF WORDS

Article originally posted on Little Treasures Magazine.

Deborah:

I’ve seen a table outlining funding for children with disabilities and my overall impression was that we should enjoy all of this wonderful support while Zeke is a preschooler because once he turns five, government assistance will be a lot more difficult to come by.

Those in the know tell me that resources are pretty stretched but we never get that impression from the therapists we see through Child Development Services. Our lovely team always give Zeke their full attention and you would never guess that they still had millions of other kids to see that day.

So I’ve been appreciating all the help we’ve received, feeling like we’re being eased ever so gently into our new role of parents-of-a-child-with-a-disability. We’ve got plenty of time to learn the ropes before having to become Ezekiel’s advocates in a few years, potentially fighting for our son’s right to attend our local school and clamoring for any teacher aide assistance we can get.

At least I was feeling like I didn’t have to be much of an advocate for Zeke just yet but now I’m not so sure. We went for a catch-up visit with Zeke’s paediatrician a few weeks ago and I was pretty disappointed when we received the report in the mail.

The paediatrician’s letter was headed: “Problems: 1. Trisomy 21…”  Erm, last time I checked, Down syndrome wasn’t a problem to be fixed. Trisomy 21 is a part of who my son is. He has three copies of the 21st chromosome, just as he has big blue eyes and two dimples on his left cheek.

Perhaps it sounds like I’m being overly sensitive. Surely it’s a matter of semantics; “problems” is just a word and a relatively inoffensive word at that.  But I don’t think that’s good enough. Words are powerful and important and I don’t want my son to be limited by such language – particularly not by the health board that has done such a wonderful job of supporting him so far.

I think Zeke’s paediatrician needs to have a look at The Super Power Baby Project. Photographer Rachel Callander and her husband Sam grew tired of the language of deficit that was used to describe their daughter and they began to talk about her in terms of her strengths – her super powers. Rachel has created a beautiful book with photos of dozens of New Zealand children, the accompanying text highlighting the super powers of each child. Truly inspiring.

And so I find myself compelled to advocate for our little guy already. I know that the paediatrician meant no harm; indeed, further down the report, Zeke is described as “progressing well” and the doctor has “no concerns at present”.  However, I feel that I need to write and request that a small change be made to the Paediatric Service’s report template.

My child is not a problem.