For a while now, hubby and I have been feeling increasingly…ooky about developmental assessments and developmental age. Rowenna has had 3 formal developmental assessments. At first, this was something to cling to. We didn’t know much about child development or about our parenting style. For the first 4 months of her life, our goal was “get her to surgery” and our days and nights were consumed with tube feedings, medications, and, for me, pumping.
At that first developmental assessment, it seemed reassuring that despite her heart defect and subsequent surgery, she really wasn’t delayed. At 6 months. The session itself was interesting because I had no idea what babies actually do, so hearing therapists rattle off long lists of skills was fascinating for my data-oriented mind. But already, even at 6 months, something in the back of my mind was saying “um, why does this matter?” And the idea of having a “significant” delay at 6 months was a little laughable since she was…well, only 6 months old.
So we took her official assessment home and showed it to her therapists, all of whom nodded and smiled and said it was great to hear she was doing well. And that should have been my first sign, right there, that these things don’t matter. The people who work with Rowenna on a weekly basis didn’t care about these numbers.
We chugged along. She had another assessment at 12 months. This one showed some delays, but hubby and I didn’t care too much. We’re pretty practical people, so telling me that my daughter with a developmental delay has a delay is redundant. But since this time she was showing some delays, we got her developmental age. And again, my data brain was intrigued at learning what kids do, what the next developmental steps would be, but part of me, right in the middle of that assessment, was starting to say “hey, why are we here?”
And again we brought that assessment home and showed our therapists. They smiled and nodded and said it was nice that was making progress.
Cue her 18 month assessment. I almost didn’t bring her, but my guilty momma brain charged ahead. The guilty little voice that says “what if you’re missing something?” We heard all about her delays and got her developmental age.
Same reaction from the therapists. (And my love and respect for these fine women that work with my child has now grown by leaps and bounds. Their approach is perfect for our family.)
Something in my mind snapped – it was such a pivotal moment, I practically heard my brain go “pop!” when I realized it: I just don’t care about her developmental age. It is an absolutely useless piece of information, and it serves only to perpetuate the idea that there’s something to fix, that her deficits are what matter, and it completely denies her the dignity of acknowledging how old she actually is. (Ok, yeah, she’s only 20 months old right now, but this really does become a problem when you’re 30 and people are saying you have the developmental age of a 4 year old.)
Then we had an incredibly frustrating experience at a Down syndrome clinic. (Not the fabulous clinic at Childrens Hospital in Milwaukee.)
The visit was a total failure. Over the course of our appointment, it became increasingly apparent that no one wanted to actually listen to us. They had an agenda, and gosh darn it we were going to follow it. Speech therapy was last on the list so by this time we were feeling, quite frankly, bullied. The speech therapist insisted on performing an evaluation on her, and we should have said no, but we let it happen.
Before she started, we told her we have absolutely zero concerns about Rowenna’s speech abilities. We see her growing vocabulary of words and signs, her increasing collection of gestures to indicate her needs, and the delightful vocalizations she makes to indicate her mood. Baby girl is going to be able to communicate one way or another and we’re just not worried.
Well now we know Rowenna’s current developmental age for speech and cognition. File that under “ok, that’s nice.” And here’s the thing: this therapist refused to listen to what she can do, refused to hear our pride in her accomplishments, and insisted on telling us all that is wrong, including some pretty insulting suggestions that we don’t socialize with her enough and that she doesn’t see us as “the best toy in the room.” She decided for us that something is wrong with our child.
Again, a focus on the deficit – on the things she isn’t. And really – who cares? In a world of iPads and ankle braces and all kinds of assistive technology, what is important is that she accesses the world – and how she achieves that access doesn’t matter. We won’t be attending developmental assessments anymore.
A common conversation in the Down syndrome world is talking about this kind of thing. What percentage delay a child has, what her developmental age is. It’s both a badge of honor to have a child with few delays and also a source of stress – you don’t want other moms to feel bad.
So here’s what I suggest: let’s not worry about it. Let’s just celebrate the accomplishments themselves, and not when they happened. Let’s focus on the “can” and work on the “can’t.”