Red Flags Aren’t Always Red

May 29, 2017

As difficult as it is to hear that your child has some sort of developmental delays, it’s also a relief to get some answers. I’m not crazy after all! But then again, shouldn’t I have noticed these red flags sooner?

The problem is, the red flags aren’t always red.

When my twins turned seven, my husband and I had some eye-opening experiences that left us feeling like a) our older two children are not on par with other kids their age, and b) we were complete failures as parents.

Of course neither of those is 100% true. Rachel and Claire were not lagging behind their peers to a detrimental degree, and well, every one of us fails at this parenting thing at one time or another.

At our seven year well check, I brought up a few things in private with our pediatrician: explosive behavior, impulsiveness, mild anxiety, comprehension issues, and some physical shortcomings.

occupational therapy waiting room, prematurity, special needs, developmental delays

Hair twirling – one of her fidgets I never realized was a sensory-seeking activity

Even at age seven, the girls had trouble with certain feats, mainly balance and core strength. Bikes that I got them at a young age went unridden, as peddling and steering was too much at one time. Two-wheeled scooters were a struggle. Looking back, they had always had a little difficulty climbing, balancing, jumping. Nothing that would keep them from playing on a playground, but things that would keep them from taking chances and learning new things. Difficulty with these activities caused frustration, which caused lack of desire. If it wasn’t easy to pick up, they didn’t want to do it.

It’s possible that a lot of these things would never have occurred to me if we didn’t have a younger daughter who is extremely physically agile for her age, not to mention determined as heck and a high risk-taker. Her successes only made the big girls’ lack of physical abilities stand out more. All kids develop differently, but they were struggling with things they shouldn’t have been struggling with anymore.

When I asked if this – the developmental delays, the emotional immaturity – were a product of their prematurity, our doctor shrugged. There’s really no way to tell, she said. Lots of preemies end up needing occupational therapy (OT), as do plenty of term kids. Although they were born nine weeks early, they didn’t show any need for early intervention as babies and toddlers. They hit their milestones only slightly behind suggested markers, which was to be expected. Had I realized that their lack of core strength and balance was abnormal, I would’ve mentioned it. Sometimes these things just don’t show up until later, when you (and I mean me) realize that your kids are struggling a bit.

It wouldn’t hurt, she said, to get them evaluated for developmental delays and see if they would benefit. The therapists could also give them tools to cope with impulsiveness, anxiety, anger, basically all of the emotions that my girls seemed to feel to the extreme.

occupational therapy, developmental delaysOT was basically the best thing we have ever done for these kids. Our evaluations showed that they were about two years behind on motor skills, balance, and core strength, all things that can affect productivity and attention span. They did strengthening moves and yoga. The therapists taught them how to tie their laces, something I had been fearing pretty much since they started wearing shoes. It was basically an hour of play for them with someone – most importantly not me – cheering them on. And in eight short months they graduated and we chalked this up to yet another parenting experience.

The most eye-opening takeaway from OT came when Claire’s therapist mentioned, quite candidly, that she is a “sensory seeker.” So many things from the past years all fell into place. The random touching. The grabby hands. She reaches out to touch anything and everything impulsively, without thinking. Now I realized it wasn’t that I couldn’t control her. She literally couldn’t control herself.

I felt like OT opened this secret door to my girls’ inner workings, allowing me to understand them better. I couldn’t help but kick myself a little for not seeing these red flags sooner. But the thing is, the flags weren’t really red. When I acknowledged how difficult it was to take my three kids anywhere, I was hearing the exact same lamentations from my twin mom friends. Only after being shown the answers did the questions really start to arise.

I had a long conversation recently with a friend about her experiences with OT and her two children, who are on the spectrum.

“They taught me how to be a parent,” she admitted, explaining that at one time they had early intervention therapists coming to her house twice daily. “They potty trained my son.”

I missed out on that perk, but the therapists did give me tools to use as a parent to help keep things consistent at home, things that maybe someone born with more parental instincts would already know.

But I never claimed to have many of those to begin with.

Don’t miss episode 10 of the NICU Now podcast: Understanding Developmental Care in the NICU, with special guest Sue Ludwig of the National Association of Neonatal Therapists.