Therapy

Because the boys were born prematurely, we have three prescribed visits to a developmental clinic to assess their progress in bridging the gulf between their chronological age and the age they would be if they'd been born on time -- in our case, roughly two months. The first visit passed mostly without incident in January, but we had our second one in late July, and as we crept toward it I had that horrible feeling of being about to get busted for not doing my homework. I knew the guys were doing great in some areas, but I also knew there was one glaringly empty box on the checklist: sitting.

"Wait they don't what?" the therapists asked, confused. "Hang on, explain again what they don't do?"

They don't sit. I don't mean in their high-chairs: strapped in and supported, they sit in high-chairs, car seats, boosters, whatever. But when it comes to play time on the floor, the beans do not sit. At all. They cannot push themselves from the floor into a seated position, they cannot stay in a seated position (well, Liam can hang out there for a little while, but he doesn't), they do not want to be in a seated position, and Dylan can't get out of it gracefully. So, unlike most babies who sit on the floor and play, our guys can't. Don't. Both.

The therapists had never heard of this.

And frankly, I knew it was weird, too. It bothered me constantly. We watched our guys pull up on the coffee table, the bookshelves, our legs, and cruise along, side-stepping and using their hands to get around; we watch them haul themselves across the floor at light speed. They are engaged and engaging; they smile readily, laugh, react to the world around them. But no sitting. We'd try to fold Dylan into a sit, but he'd straighten his legs immediately, arch his back, twist and turn like a tornado against our bodies to avoid being forced into that position. When we got him there, he'd either fold in half or kick out and fall straight backward (usually right into us). Their trunks never got strong enough to hold them there. It's a vicious cycle: They don't do it because they can't, and they can't do it because they don't.

We all kept thinking they'd develop the skill, that cruising would make their backs tougher. Our doctor seemed to think we should wait and see. And then suddenly their 12-month developmental checkup was upon us, and our dudes couldn't sit on the scale to be weighed.

Also, they aren't clapping -- or bringing their hands together to bang two toys together, or anything of that ilk. While one hand is stationary they'll bring the other to it, but that's it. They don't point when they want things. And they only military crawl; no hands-and-knees, tummy-off-the-floor movement. That in itself isn't a concern for most parents because most babies learn to sit before they learn to crawl. I think the sitting is the lynchpin of all of this. Because our beans don't, they never had times when they were too immobile to get a toy and cognizant enough to point at it so that we knew what they wanted. Our guys just went and got it themselves. And when you spend most of your time on your tummy, or standing up with at least one hand on a supportive surface, you don't tend to clap much. It's like the old tacky joke, "How do you get a one-handed [insert stereotype for stupid person here] to fall out of a tree? Wave at him, he'll wave back."

So on Wednesday, Kevin and I took the dudes to an OT/PT clinic for another assessment, with the goal of establishing a regular treatment plan. They were evaluated separately, and no surprise, found to be grossly all-over-the-place in development and hypotonic (in short, untoned) in the hip and shoulder joints, as well as the torso. They hadn't seen anything quite like this, either -- the guys can do things you wouldn't expect kids who skipped sitting to do. They did rule out autism as the cause of these particular delays, although I know that doesn't necessarily mean they're in the clear forever; still, that was enough to get me to breathe a bit easier. 

There are caveats all over the place: Liam can do almost do a lot of this, or more or less everything Dylan can't. He's three and a half pounds sturdier at only an inch taller, so that makes sense. You can get him into a sit, and he'll stay there, but he doesn't have much interest in doing it for long. His posture is better than Dylan's -- he cruises more upright, he kneels more upright, he will catch himself on his hands, he will try to stay on his hands and knees with his tummy off the floor if you knead him into that position. He squats properly from a standing position to pick up toys on the floor, he gets up to a stand correctly. Dylan often picks his leg up and straightens it behind him at an angle, meaning when he stands up, he's heaving leaning on whatever he pulled up on, and then slowly scoots his feet closer to it so that he's nearer to vertical. He also tries to pick stuff up without bending both knees, or sometimes without bending even one, and thus frequently gives up, and starts crying when he's tired of standing because he gets too scared to try and lower himself. (He's had a few more falls than Liam has, and so I think he's gun-shy, which may govern his developmental lags as much as his lack of torso strength does.)

But, for now, the program is the same: Mondays and Fridays, for the next month, include an hour of therapy with their ladies -- they'll work concurrently, in the same space, possibly also interchangeably but it's hard to say yet -- and then whatever we can do with them ourselves on an extracurricular basis. I'm confident this is the best and right thing for them, a little annoyed at myself for taking this long to get here even though I also understand the logic we used to defer this, and anxious to get going. I want my boys to be strong, to keep exploring the world without fear. 

And I want to get to a point where I'm not scuttling along the floor after them, trying to make them crawl with their tummies off the floor, holding their bellies up or their knees at a 90-degree angle, because damn, that really hurts a girl's knees and back, you know?

Comments

[Sarah]

One of my good friend's daughter was born on time, and at 15 months, she wasn't walking. She was prescribed PT and they found it made a HUGE difference, in a short period of time. It still took about 4-5 months of PT and patience, but she started walking in June (right about 20 months). So, all this to say, I suspect you'll see a big difference in a short period of time, and not to worry, because even full-term babies have funny developmental quirks.

[erica]

Have you considered having the Beans checked by a chiropractor who specializes in pediatrics? (Yes, there is such a thing) Perhaps one of the reasons why they're not sitting, etc. is because it's not comfortable due to physical misalignment? It's not necessarily going to be the be-all/end-all of their challenges, but if it's a small step that helps, why not?

[Kristina]

I work in a pediatric hospital, across the hall from OT/PT. It is amazing how much is accomplished in a short amount of time in these sessions. And the kids always seem to love it because they make it into play!

Best of luck to the Beans, I am sure they will do just fine.

[Alyssa (your Midwest doppelganger?) :-)]

Through lots of sheer luck and probably the fact that we have an older son who was a week overdue (so my uterus was extra...um, stretchy?), my little guys managed to make it to two days before their 37-week due date; however, we found out at the babies' 1-month pediatrician visit that Holly (baby A, who was really squashed in the womb by her giant brother) had plagiocephaly, torticollis, and a yeast infection in the folds of her neck; each condition made the other two conditions worse. YAY.

(We also found out at the same appointment that her twin, Will, had the same mild-but-important-to-treat-aggressively asthma as his older brother Joe and needed treatment with a nebulizer twice a day. That was one shell-shocked ride home from the doctor.)

Holly's been in physical therapy since she was two months old, and is doing a lot better (at 11 months old), although she is still mildly affected by the plagiocephaly and more so by the torticollis (the stubbornly recurrent yeast infection finally completely disappeared early this year). She's currently receiving physical therapy once a week through a county-sponsored program where her fabulous therapist comes to our house, and we pay a small sliding-scale fee once a month. The therapist has been great about teaching us helpful ways to carry and position Holly that have become automatic and we try to do throughout the day.

Sometimes my worry about her conditions makes me guilty and impatient, and I start thinking stupid things like "Am I really doing everything I can to help? I know! I'll do nothing else but do her exercises with her 24 hours a day!," but I know that's... silly. Time, good physical therapy, patience, and some future growth spurts are what will help resolve the torticollis and her (mild) facial asymmetry....

I know it's scary, but it sounds like you two are ON IT. And the reason for the wait is perfectly understandable. I'm sure therapy will help SO MUCH, and all of you will do just fine, overcoming this wrinkle just like you've overcome all the previous ones, and life will get easier again.

Oh---one thing I've noticed is that it always helps if the therapist has children of her or his own. Until we hit our insurance cap for PT in May, we were going to a private, hospital-affiliated PT center, where there was often a different therapist every week. One of those therapists was fresh out of training and had no kids of her own (because she was, like, 12!), and she was OBSESSED with the idea that we were possibly keeping Holly in her car seat a second longer than necessary.

It was hard to respond to her seriously---at that point Holly was only ever in her car seat to go to the doctor, to Grandma's twice a week, and to therapy! We always took her out of it the second we got to our destination. And I mean, how the heck were we supposed to get her from place to place?! Put her in a basket made of rushes and float her down the river?!

The therapists who DO have children, though, really understand that as important as it is to you to do everything you can to help your child, daily life also has to go on---she's gotta be in her car seat sometimes, and hey, guess what, her brothers occasionally need attention, too.

Anyway.... sorry this is so long! Hope the beans take to therapy like ducks to water and you see lots of reassuring things happening soon!

[vibram five fingers]

It still took about 4-5 months of PT and patience, but she started walking in June (right about 20 months).

[vibram five fingers]

He squats properly from a standing position to pick up toys on the floor, he gets up to a stand correctly.