(Failure to) Thrive…

My son was born tongue-tied. Literally.

Many people don’t know that tongue-tie is an actual thing…Tongue-tie (ankyloglossia) is a condition present at birth that restricts the tongue’s range of motion. An unusually short, thick or tight band of tissue (lingual frenulum) tethers the bottom of the tongue’s tip to the floor of the mouth. The restricted range of motion can interfere with breast-feeding. Ultimately, poor breast-feeding can lead to inadequate nutrition and failure to thrive.

So my son was born tongue-tied, but it’s not something they routinely check for when a baby is born. We discovered this fact only after he began losing weight at a rapid pace in the first week of his life. His pediatrician started using the incredibly frightening term “failure to thrive” and suggested we consider switching him from breast milk to formula.

Even in my postpartum haze and exhaustion, there was one thing about which I was adamant – nobody was going to talk me out of breastfeeding my baby, not even the pediatrician. We found an excellent lactation consultant. She took one look at my son’s poor latch, stuck her finger in his mouth, announced that he was tongue-tied, and immediately detailed a plan that would both fix the tongue-tie and quickly move him well outside of the parameters for failure to thrive in a newborn.

She was decisive, convincing, comforting, and empowering. And she was right. We followed her advice – took our baby to a nurse practitioner who quickly snipped the excess tissue causing the problem, we worked with the lactation consultant several times a week to fix the poor latch, and supplemented the breast milk with formula via syringe until our boy gained enough weight and strength to rely solely upon his ability to nurse. It was hard and it was exhausting – simply switching him to formula from a bottle would have been so much easier – but it was good advice and a solid plan. Within 2 weeks he went from being in danger of  failure to thrive to healthy and stable. Within a month he was solidly healthy and thriving. Almost 13 years later, I still consider the advice given to us by that lactation consultant to be some of the best “parenting advice” we have ever received.

Now he is 12 and while there are no doctors using the term failure to thrive, it is evident to us that he is once again in danger of failure to thrive. He is physically healthy and strong, but thanks to the triple whammy of autism spectrum disorder, mental illness and middle school he is in danger of failure to thrive emotionally and socially.

After a few months of a relative stability and calm, he has cycled back into a place where his depression is deep and his anxiety is running rampant. He hasn’t had a solidly “good day” in about three months. While his psychiatrist has been making adjustments to his medication, his private therapist and the school counselor have been unsuccessfully trying to get him to talk through his feelings and thoughts – and all of them have been hitting the brick wall that my son has constructed around himself.

Because my son won’t/can’t fully express the things that are adding to his anxiety and depression, we are all left to make our best guesses. We know with certainty that the unpredictability and noise of crowds are a trigger, so we are all fairly certain that the day-to-day routine of his middle school is a constant and persistent stressor. Middle school is not causing his anxiety and depression, but it certainly isn’t helping. Two weeks ago, the psychiatrist suggested we might consider a smaller school for next year. A few days later, the psychologist firmly stated that he believes a small, private and possibly even therapeutic school is the best environment for our son going forward.

In the days following those two conversations, my thoughts kept flashing back to those newborn days. I could remember the fear and uncertainty surrounding the idea that our baby could possibly be anything other than healthy,  and the clarity that came from the advice of the lactation consultant. While the advice to change schools came from two professionals who we fully respect, it was not clear-cut nor was it a guarantee that a change in scenery would “fix” the problem. Instead of providing certainty and direction,  the advice caused more doubt and confusion. The words failure to thrive kept looping through my thoughts and I was desperately wishing for somebody like that lactation consultant to show up and outline a clear plan for us. I kept looking around for somebody who would be decisive, convincing, comforting, and empowering.

If only adolescence, autism and mental illness could be “solved” in a way as simple as clipping some excess tissue and working hard to teach a baby how to eat. Wouldn’t that be lovely?

Of course, it’s not that simple. It’s complicated, and confusing, and messy. There are no universally right or wrong answers, and there are no guarantees. I do whole heartedly wish there could be a person with a decisive, convincing, comforting and empowering plan to move my son from this place of emotional/mental/social failure to thrive to fully healthy and happy. But I know it’s not that simple. What we can do – what we must do – is take into account the advice of professionals we trust and respect, ask a whole bunch of questions, include our son in the decision-making, trust our gut, accept that we could be wrong, and make the best decision for the moment. The best decision for the moment, may not be the best decision for all time or all things – but it’s the only way forward, and moving forward is the only possible way to move toward thriving.

For now, even with the advice of professionals we trust, our guts are telling us to not change schools. For every reason to move him, we can come up with an equally compelling reason to not move him, including his strong desire to remain in his current school. So he won’t be changing schools in September, but we will keep working toward and looking forward to the day where he is thriving.

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