percentiles of happiness

In ALL, FAMILY MATTERS, ILLNESS, SNIPS & SNAILS by Stephanie Klein26 Comments

A bout the time when I was graduating from college, a man spoke to me about career choices, his own, and those of his grown children—almost all successes with lively families enjoying their work and the accolades that came with their prestigious positions in law and medicine. There was one, a daughter, who troubled him. Unemployed, unmarried, no direction.

“And she’s a slob, too,” he said.

We sat for a while, watching her across the yard as she played Wiffle ball with a dog and three loose-canon cousins. On any other day, I might have added, “With bad posture,” but on this afternoon, a day of lemonade and frankfurters, I felt obligated to give sunshine, telling him that she’d find her way in time. Then I directed the focus onto his other children, remarking on how well they’re doing, how happy—”You’ve obviously done a lot right.”

“You have ten fingers,” he said, “but it still hurts when you cut one.”

percentiles of love

That conversation, had once upon a time ago, in passing really, at a backyard BBQ, has stayed with me through the years. And I think of it now as I read the write-up of the Peabody II Assessment from Kind Sir’s physical therapists. “Significant limitations.” It feels like someone just squeezed my chest, the entire cavity. My eyes keep scanning over the words “5th percentile for his age group,” “fine motor deficits.”

He’s 45 months old (3 years and 9 months as of the testing). He’s been going to physical therapy twice a week since May, 2010. His raw scores for gross and fine motor skills, on average, put him at the age equivalence of a 21-month-old. “That’s not even two years old,” I stop to think. He’s turning four this December.

The therapists stress that there were certain tasks Kind Sir came close to doing, mostly, or partly, but given how the grading works, it’s all or nothing.

All or nothing, I zip back to the eight weeks in the NICU being told all this preemie stuff was quite common, then to six months old, rushing in for emergency brain surgery, his hydrocephalus and shunt, spinal cyst, surgery consuts. Helmet kid. Some of that was all or nothing; this, lacking power to kick a ball, is pie—a cake walk when you put it into perspective. All kids learn to walk eventually, they learn to poop in the pot, how to write their names and make their armpit brootz. Focus on what matters today: the kid is happy.

lobster walk

I mean happy. His teachers come to me and say what a pleasure he is, “so affectionate and loving, such a joy” that they can sit him with anyone over lunch. He loves everyone instantly. And he’s able to keep up with his friends on the playground, compensating one way or another for his lack of balance.

And that’s when my heart breaks a little. I think about this sweet, truly loving kid, standing on a playground with his friends, noticing that they can all get up on the swing. He can’t. I think of him at soccer, with all his agile peers weaving around cones, as he knocks them over. As he stands alone on the field as his friends pass him by, withdrawing a little, embarrassed that he can’t keep up.

Yoo hoo, over here. Yeah, hi, psycho. The kid is happy! Yes, he is. But I don’t want him to begin to withdraw or act out because he feels limited. Already, I’ve learned that he takes after me, defaulting to humor when there’s something he can’t do, or when there’s something that scares him. When I ask him to come play Arts & Crafts, to help me snip and cut paper, he’ll begin, but when he feels he can’t do it, he’ll either resort to baby talk and sing, “I’m a baby, goo goo gah gah,” or he’ll say something in a silly voice and laugh, hoping I’ll laugh too… and move on.

When you think about it, I’m guessing this is where procrastination and avoidance begin. Never mind bedtime stall techniques. Flirting is where it really all begins. But all the sweet smiles and “Mama, you’re my sunshine” talk won’t get him out of the 5th percentile for his age group. But neither will underestimating him.

Sometimes you just have to do everything you can do and everything they say you can’t.

“Never let anyone convince you that you need a cast for a cut.” Lick your wound and carry on.

Comments

  1. As a child with physical problems (congenital hip dysplasia) and now a mom myself, I know exactly how you feel. The funny thing is that my husband now says that he thinks that my parents are surprised now about how great I’m doing, given what they went through when I was a child. He’ll probably grow up to be a great adult, just maybe late blooming, but rewarding and loving. F the percentages!

  2. Oh my, besides everything, he’s so beautiful; he has your features absolutely. Just look at the shape of that face, the chin the eyebrows, the way he’s standing. Mini-me Stephanie.

  3. Both of your kids are beautiful and will be fine! Sometimes I wish my 7-year old son who has ADHD had a little less in the way of gross motor skills.

  4. You are smart and observant. He is VERY lucky to have you in his life. He will find his way if he knows you have his back.

  5. The skills that lend popularity and self-esteem in youth aren’t necessarily the ones to provide success later in life. That star football player from high school may amount to nothing after his glory days on the field. And the nerds who can neither catch a ball nor get a date for the prom may go on to start companies like Google, Facebook, and Microsoft. I understand your pain as a Mom who wants to see her child rank in the higher percentiles, but I also know you’re smart enough to work through that pain to see the larger picture. You have a happy child. He understands his limitations and has learned to compensate. We all have those limitations in one way or another & have to find our way through the pitfalls. Hang in there.

  6. I love that you didn’t once mention Abigail in all this. No comparisons. You are a wonderful mother. Really wonderful.

  7. God gave you this child, because he felt you were the obvious best person to be his Mother. You are the lucky one to have such joy in your life :)

    Have you read Kelly Hampton’s blog? If not, take a look.

  8. Aw, honey, that was beautiful. My brother suffered brain damage due to lack of oxygen at birth – they didn’t do c-sections then. Not enough brain damage to require a ‘facility’, but enough that he was the focus of years and years of my parents’ attention. Therapy, physical and mental. Special tutors. Special classes. Esteem boosting exercises. And here is where I normally go off on a Pollyanna kick, but not today. The fact is – it’s hard in a family of the extra-gifted to have one that’s not, and knows he’s not. I am the middle child – he’s my older brother. And I know it is my destiny to take care of him, arrange his finances so he can live comfortably and safely.

    I will tell you, in a bit of Pollyanna-ness, he grew up, can work, found love, married, moved far away from us to stop measuring himself against us, found religion, and has found a quiet acceptance and peace. And even further in the ‘let’s find the silver lining’ mode – it taught my friends, family and me to never, never be mean to those who have challenges. It isn’t their fault. It isn’t their choice. It is up to us to be kind, defend them, and more importantly, help them find a place in our fast moving, high tech, demanding world.

    1. Author

      I read this, and other responses, and cried. In a good way. I think.

      It isn’t their fault. It isn’t their choice. Life can be terribly unfair. We all have shit to deal with though, don’t we?

  9. Great post, and the part about the beginnings of avoidance and “changing the subject” is really well-taken. Great insight.

    Just read a similar blog post today from Dr. Jen Gunter, mother of preemie twins (triplets, actually, but one didn’t survive), about her son asking why he’s “always the slowest.”

    1. Awww, I read this post….love his reply to “I never give up!” – Hey! That’s my super-power too!

  10. You are right about Lucas”kind sir”, his social skills and compassion for others is beyond any other four year old I have ever met. He is a wonderful role model for Jacob:)

  11. thank you for this post. when i was preggo, i have always wondered will i love my child no matter how he turned out? if he had down syndrome, if he were a dwarf…would i feel any differently about him or less proud? or care less about giving him a good life? NO. like your last sentence, put on them blinders and keep moving forward to the light.

  12. My 1 year old has been in physical therapy since 8 months (which at the time, the report put him at a 3 month old in some areas). The reports are frightening. Try to focus on the every day miracles and the ways in which he far supercedes many adults — by just being a mensch.

  13. my twin and i were born two months early in ’84, and i ‘had some trouble’, as my mom liked to say later. i couldn’t pump on a swing, had trouble catching a ball, couldn’t cut with scissors, and depth perception was always an issue (the test i remember doing in therapy around age four is a doctor constantly moving an index finger toward my nose in hopes of getting my eyes to follow it and cross appropriately). my mother was always concerned about the future, and like you, luckily never compared me to my twin…i never thought anything was wrong with me and like your lucas was always happy. i don’t know what to tell you except that i hope a similar story gives you comfort, because eventually it all came together for me. i can’t tell you an age at which it all caught up, but it did and i did well in school and college, became a teacher, and am very happy. i hope the same for lucas :) your love for your kids is so apparent in everything you write; they are lucky to have you!

  14. I got the lump in the throat and the teary bit too when I read this

    it taught my friends, family and me to never, never be mean to those who have challenges. It isn’t their fault. It isn’t their choice. It is up to us to be kind, defend them, and more importantly, help them find a place in our fast moving, high tech, demanding world.

    Jeeez.

  15. Lucas’ open heart and kindness comes through clearly in photographs you’ve taken of him. He looks like a dear and sweet little boy. Like a wonderful kid.

    It sucks that kids judge each other and that he might have to face that judgment in school. I would feel like you–wanting to spare him that.

    You ssem to always have good sense about the kids. I know you and Phil will do the best you can to give him a chance to progress and to help him accept his limitations. Because, after all, we all have limitations of one kind or another.

    Sorry he has to face this and will keep his sweet face in my prayers.

  16. Where does his cognitive development stand? I’m going to assume it’s on target or over, based on your description of his social/coping skills. And this is huge: “And he’s able to keep up with his friends on the playground, compensating one way or another for his lack of balance.”

    If Lucas can continue to be able to compensate like this as he continues to work on his motor deficits w/therapists, he’ll be fine. Or more than fine.

  17. Thank you. Last year my bestfriend’s sweet (now 3) year old son was diagnosed with a brain tumor and they immediately did surgery, just one month after our little girl was born. I have tried to find some words of comfort for her and what they have been going through as a family. Yesterday I forwarded her this article, unsure if it would hit too close to home, or not close enough. She replied last night and thought you nailed it. So, hopefully the fact that you bring comfort to others will provide some comfort to you as well.

  18. What lucky children, to be blessed with parents who adore them so completely! There are plenty of kids who meet every milestone, but whose parents hold them back through unbelievable pressure, criticism, expectations and countless other subtle abuses. Who cares what the tests say? Lucas is miles ahead in so many ways, thanks to a supportive and loving family who will help him chart his own perfect course through
    life.

  19. my twin daughters were preemies and we did the PT/OT/Speech thing for years and for one of them, the diagnosis was never great. All kinds of trouble with motor skills, organization, all of it. She’s nine now and while we still consider her slightly spacey (in a completely affectionate way!), she has grown out of so many of those early issues and just came home with straight A’s on her interim. I hope the same thing happens for your little one… he’s a doll.

  20. I have a friend whose son was born two months early, ended up with an infection that caused him to have CP. He will be six in November. That little man may not be “mature” enough to walk without aid but he gets around. He laughs, smiles and is a joy to be around. Like you, my friend was very worried about him keeping up with his friends and classmates. She is beyond amazed by the kindness and love that his school friends have given to him. She has told me stories of the bigger kids always running up to say hi to him or help him if needed. Sometimes I think we let our fear of being made fun of cloud our abilities to see that there are some great teachers and parents out there that make sure that their students/kids know that just because someone might be different doesn’t mean it is a bad thing.

    Has Kind Sir been able to get into horse therapy? This has been a great PT session for my friend’s child. He learns to balance, etc. while riding a horse.

  21. For quite a few years I’ve been involved with horse rescue, rehoming & retraining. Horse therapy not only does wonders for humans, but brings a new life to horses who may otherwise have ended up in the horrific slaughterhouses of Mexico & Canada. A win-win situation.

    1. Author

      I hadn’t ever heard of horse therapy. Will look into it, but I think he might be too young? Swimming is good. Plus, we have a lot of exercises to do at home, from color-coded clay therapy to balling up pieces of paper with one hand to coloring with crayons (for fine motor).

      Also, Carole, thank you for your email. It was very touching and means a lot.

  22. Stephanie,

    I remember when you went into labor and Phil posted about their birth. I prayed that they’d be okay — knowing that they came into the world a little early. He is a lovely, handsome boy with an obvious off the charts EQ – which in the end is so much more important in life!

    xo,

    MS

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