There is an interesting thing that happens when you have a child with special needs. At the first sign of delays or a cause for concern, people are quick to tell you “don’t compare them to other children”. Friends, family members, random people at the grocery store – it’s one of those things that you hear all of the time. When we first started realizing that G was delayed, I must have heard “you can’t compare her to B”, at least twice a day from well meaning people. And I truly believe that they *do* mean well.
Interestingly, I never compared G’s development to B’s. B was so far ahead of the curve that I was well aware that she didn’t represent “standard” development. Well that and I’m really disorganized and never managed to write down what she did and when, and with seven years between kids, I’ll be darned if I could recall much.
I don’t check the books or charts or websites that list the milestones and how and when they should be hit. I operate under the theory that we know where she needs help, and we get and give her every ounce of help we can, but beyond that I don’t need to know or focus on where she “should” be or what is “normal” for her age. What’s the point?
One of my favorite bloggers, Jess over at Diary Of A Mom, posted on Facebook this week how as special needs parents we are often put in the situation where we are expressly asked to do just that, compare our children against standardized norms of development. In order to assess where our kiddos are, and what they need, we fill out countless questionnaires, profiles and rating scales. Can they do X, Y & Z? Do they understand Q, R & S? Can they say L, M, N, O, P?
Those of us who often work so hard to guard our heart and souls against comparisons, are forced to do just that. Often. And the crazy thing is that these charts, questions and rating scales are really the only place I ever learn what the “developmental norm” is for a child my daughter’s age.
Early on, these would tear me apart. I would lament over the questions, shocked at the realization of just how far behind she was. It’s one thing to know your kid is behind, it’s another thing to KNOW. My heart would break, I’d cry in my car, the shower, wherever I found myself that I could privately fall apart. There’s is no mistaking that you do grieve, even if you don’t realize it, for the childhood that you thought your child would have.
Somewhere along the way, it’s changed a little. I’m not sure that it’s easier, but I’ve gotten better at blazing through the questions, not letting my mind wander. “yes, no, yes, no, no, no… next page… done!”. I don’t over analyze the questions, I don’t try and figure out the scoring (hard to do when you spent two semesters studying testing and assessment in grad school, measuring these same types of things). Instead of looking at these things as a way to see how far behind she is, I’ve learned to embrace them as a tool that keeps the many important services she needs up and running. They serve a purpose that helps her, and that’s what matters.
I know she’s behind. There’s no denying, no hoping I’m wrong, it is what it is. I accept that and with that, there really is some peace. I also know that those tests and questions leave a lot out. They don’t ask how many people she made laugh this week. They don’t ask how proud of herself she was when she managed an awkward little motor planning challenged wave hello to another child, unprompted. They don’t measure how she sat in a “bus” made from a tote and toddler chair, and hummed along to wheels on the bus while her sister sang. They don’t rate how her smile brightens up an entire room. They don’t begin to measure the joy she puts out into the world.
Basically, those questions and assessments don’t measure awesomeness. And dare I say, that she’s light years ahead of some of her peers when it comes to her awesome level. I know a heck of a lot of people who probably nailed every single developmental milestone on time, or even early, who have never shown the pure joy that this kid has most days. Certain things just don’t fit on rating scales.
Whenever I ask myself what I want for my girls in life, the first answers are always the same. I want them to be happy. I want them to know and share joy. I want them to give and receive love. Sure, there are a million other things, but nothing on those assessments measures the capacity or potential for happiness, joy or love. There is no universal definition of what those mean. No standard There is no comparison. We can each know them in our own ways and define them for ourselves. And I have great faith that both of my girls have awesome potential for both giving and receiving happiness, joy and love. My girls may find their happiness, joy and love in totally different ways, but as long as they find it, that is what matters.
So hand me another bubble sheet, give me another rating scale, I’ll file the results into my pretty accordion file after giving it a quick read. I will take it in, make sure that we are doing everything we can to meet the needs and areas that are a challenge, but I will fight like hell to not let those comparisons steal our joy. Those reports say a lot, but they do not tell me if my girl is awesome. And that’s okay, because I already know she is.