Developmental Delay Without Diagnosis

How to move forward without a diagnosis


One of the best parts of having a child is dreaming about what she will become. Not just if her hair will stay blonde, but what her favorite song will be, what sports she'll play, what second language she'll eventually learn. But many parents will discover something about their child that could threaten this image. And they’ll look for the name of the disorder that has jeopardized this “hypothetical” future child. But after a myriad of doctor’s appointments, a battery of tests and a list full of unanswered questions, they’re still left wondering: “Why?”

When a child’s development is slow in certain areas (intellectual, social, motor, and/or language), pediatricians worry that he will struggle to reach his maximum potential. Often, these children will be noted to have “Developmental Delay”, or even “Global Developmental Delay”, which is when two or more of those categories is delayed. To a pediatrician delays can be caused by prenatal, perinatal, postnatal or undetermined causes, with the latter accounting for almost 62% of all developmental delays. As a parent, one of the toughest things you can learn about your child is that he is not developing at the speed he should. But what can be even harder is when you don’t know why.

It’s incredibly difficult to not be able to answer this “why” question. I wish more than anything I could. And I can’t tell you what the distant future holds, though that’s often what you’ll ask. But as a pediatrician, I know first-hand what I wish I could tell you, and what I wish you and your family knew.

Gays With Kids founder Brian with his beautiful daughter Ella, who was born with global development delays. She's now 5 years old, and the family has received no formal diagnosis.

You are not alone.

If you lined up 100 families whose children have developmental delays, 62 of them are like you. With unanswered questions and no formal diagnosis. What’s heartbreaking for me is when families feel unsupported. Find support groups, care networks and non-profit organizations. They’ve encountered similar struggles, and their words of wisdom will make such a difference… even if just to remind you that you are not on your own.

Learn your child’s needs.

Every child, whether she is delayed or not, is different. And what is the challenge as the parent is finding these differences and advocating for them. Whether it’s a therapy you think may help, extra test-taking time in school, or even a cubby close to the door in kindergarten. You know your child better than anyone… including your pediatrician. And we love to discuss the needs of your child. In fact, the most dreaded conversations that I have are the ones where the parents haven’t discovered their child’s skills, delays, and needs for themselves. If we can be on the same team, we can do so much more!

Doctors search for a treatment, not always a diagnosis.

As a pediatrician, I see how hard parents advocate for a diagnosis. But I also see families undergo expensive and often invasive diagnostic testing, even though the results may not change the therapeutic or medical management of the delay. Your pediatrician understands the heartache, many of them personally. But our job is to rule-out the scary causes of developmental delays (for example: neurologic issues, metabolic disorders, certain genetic conditions). Once we’ve done that, we can tailor our visits to figuring out where your child needs the most help, and bridging those gaps.

There’s a benefit to early and long-term intervention.

Research shows that children with developmental delays benefit from both early and ongoing interventions. The screenings done in infancy and toddlerhood help show where your child has areas that may separate him from his same-aged peers. From there, they get targeted interventions and resources based on their delays. You will likely follow-up with these services long-term, but don’t enter into it believing that your child will need lifelong intensive therapy. You’ll develop positive relationships with your physical/occupational therapists, speech therapists, pediatricians and other providers. Follow-up visits over time may become opportunities for you child to show off how well he's doing!

It doesn’t change who your child is.

Regardless the cause of your child’s delay, she is yours to shower with love, praise and self-confidence. Screening has helped children get diagnosed early enough that she is often too young to know that she's behind her “typically developing” peers. To her, she can grow up to do anything. And many of these children will in fact grow up to reach far beyond our expectations of them. But it isn’t our job to label the kids who won’t. It’s our job to fine-tune their skills so that when they are school-aged and beyond, they have the tools they need to be great. Parents always stir up the best in their children. You’ll do the same. But in the end, it’s all a matter of perspective.

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