Below Average

At 3 a.m. about three weeks ago, I realized that my daughter, Ellie, is 4 years old.

Next year she will be 5 years old. At 5 years old, she will be old enough to start kindergarten.

I’ve been wondering how this happened ever since.

“Sometimes I really don’t like being Ellie’s mom,” I said to a friend. “I mean, not specifically Ellie’s mom, but just the mom of a kid who is so complicated.”

Just when her dad and I think we can breathe a little after making a big decision in her life, another one comes up and we have to think hard again. Thankfully this one isn’t about her living, it’s just about her livelihood.

What’s next? How do we decide? What is most important? Where will she bloom?

I think I woke up in the middle of the night panicked about this because some of her typical friends have left her school this year. She has been in class with these friends from the beginning, and now it is just time for them to move on to join a typical Pre-K class at a traditionally typical school.

I knew that this day would come, I just didn’t realize we were here. I know Ellie is different from these kids, but it still feels, to me, a little like we are falling behind the crowd and I don’t like the idea of being left behind.

I didn’t realize I was competitive until I was an adult. I overheard my husband describing me to my friend as a ‘bad sport.’ I didn’t know that if I didn’t win, I could be guilty of unsportsmanlike conduct until I heard him talk about how embarrassingly I reacted when I didn’t win a game of Gin Rummy against him one day.

After that, I have spent some time thinking about times in my past when I wasn’t very nice if I didn’t see myself at the top of a pile. I could be jealous and mean, and I feel really sorry about those times. I think about the people I probably hurt along the way often – hopefully I think about those times more than they think about them.

The goals I have for my children include happiness. I want Ellie, just like our other two kids, to do whatever makes her complete and gives her purpose. My husband Ben and I agree, whatever we can do to facilitate her achieving her own goals, we will do.

Earlier this week we got an evaluation report from her school. Each year, the school does a series of tests to inventory her development in motor skills, social skills, language and personal skills. The tests score her by delay percentile, age equivalent in months and ranks her on a scale with her peers, so we can get an idea of where she sits.

“Did you read that report yesterday? How weird is it to start your day reading a detailed report about all of the things wrong with your kid?” Ben asked me in the kitchen in the morning. He had just gotten Ellie out of bed, dressed and in the dining room to eat her breakfast before we all loaded up in the car to go to school.

I was packing the kids’ lunches. It IS weird. And kind of made my stomach turn. And further, makes me feel even more weird that it makes the unflappable Ben feel weird enough to mention it to me.

We have three children. Jack, 6; Ellie, 4; and Gus, 2, are always compared with each other. Jack is tall. He has always been off-the-charts in growth. Gus is big too, on the charts, but just barely by always sitting at 100% on the curve, so he seems smaller than his brother was.   

Ellie is small for her age. Her height and weight are finally starting to plot inside the 1 to 5% curves, so she is the runt of the family.

Jack is reflective, logical and methodical. Gus never stops talking, is emotional and it is impossible for him to turn off the charm. Ellie wants to take care of all of us to a fault, and comparatively her brothers will always pick each other before they ask her to play.

“Ellie cannot talk,” Gus told me. I had “heard” Ellie telling me through voice, sign language and effort that she wanted to do something that her brothers did not want to do.

“What? Yes, she can,” I said. “She can say ‘Mama’ and ‘outside’ and ‘birthday’ and ‘cars’ and ‘Gus.’ She can say a lot of words.”

“Yes, but she can’t talk,” he said again, and I guess, he’s right. She can’t communicate traditionally very clearly.

Gus wears bigger shirts, pants and shoes than Ellie. That growth is obvious and impossible to deny. What is easier for me to ignore is the growth that goes on inside their brains and bodies. I can still wear my blinders when it comes to developmental milestones.

The report we got this week shows that Ellie scored younger than Gus in all but one of her tests. She is 51 months old, but at best scored at 37 months in motor skills and at worst she is at 22 months in cognition, with every other month-age in between in a dozen or so categories.

These tests are so important. We have Ellie enrolled in a school that uses this testing to help make the best decisions for Ellie so that she can live her very best, happiest life. She loves her school and everyone there, and Ben and I do too. We believe that the school has been monumental in her survival and development, and they have gone above and beyond to help us navigate this world of special needs.

I am glad we have this information every year. We chose this school for Ellie because we believed it was the right fit for us and for her, and we stand behind that decision with proof.

But, that doesn’t make looking at the test results any easier.

“You know, before her last heart surgery, I was under the impression that her life was about to be much different. I was thinking that we would have to deal with more medicine, oxygen and limiting her activities,” Ben said from the dining room where he was now sitting to breakfast beside Ellie.

“I didn’t expect she would just be a normal girl, but here we are.”   

“No matter how many things are wrong with her, I’ll still find more ways to love her,” I heard him say while they were smiling at each other.

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