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Parents of Children with Developmental Disabilities and the Power of Choice

After 25 years as a developmental pediatrician, I think I have earned the right to claim a favorite developmental milestone.

Certainly, the first smiles of a two- to three-month-old are quite special, the first signs of “life” so to speak. Of course, first steps and then the first words really grab the spotlight, warranting phone calls to Grandma and video footage posted to Facebook.

Toddler pointing while standing in playgroundI am partial, however, to “the point.” Here is the typical scenario: The baby is around 12 months old, gets her parents’ attention with a vocalization such as “eh, eh, eh,” makes eye contact to ensure that she has Mom’s or Dad’s attention and then extends a tiny index finger toward a particular item of desire. Finally, the baby looks back to make sure that Mom or Dad is following this communication. What I love about “the point” is that it is such a clear communication of a particular choice. There is so much to discern about the emerging personality of this tiny person from this single gesture. And it is the first instance of what will be a lifetime of choosing and making sure her preferences are heard and taken into account, an ability that, in the long run, is integral to feeling respected and achieving a sense of personal well-being.

Choices and Autonomy for Children
I try to offer young children in my office at Albert Einstein College of Medicine’s Children’s Evaluation and Rehabilitation Center reasonable choices. When they enter, I often ask: Do you want to sit in the big chair or the little one? Sit in Mommy’s lap for the exam or on the exam table? Do you want to do a puzzle first or color? Do you want to do math testing first or reading? These choices between two acceptable things show the child respect, give him or her a sense of autonomy within certain bounds and ease the anxiety of being confronted by a situation that seems otherwise completely uncontrollable.

But it is important to acknowledge that within the framework of choice, there are things that we do not get a choice about. In my work, I meet regularly with parents contending with the challenges of raising children with developmental disabilities. A recurrent theme they express is their feelings of lack of control and choice. Early on, and intermittently thereafter, parents say they were not given a choice in the matter of having a child with a disability.

What Parents of Children with Developmental Disabilities Can Control
Over the years, I have also found that for most parents, getting back on the parenting track is helped along once they realize that there are things within their control, and they can make choices. I try to shift the discussion in that direction as soon and as often as possible, a few choices at a time.

Early on following the diagnosis, we start with: What is your greatest concern about your child’s development? That will help us determine which services we should put in place first. Would you prefer services at home or at a center or school for your child? Let’s talk about the different treatment methodologies and their rationales. Does one seem preferable to you? Do you want to have more medical evaluation now or wait until later? In time, there will be choices about school settings and, eventually, living arrangements. I view my role as that of helping parents make informed choices—and pointing out that there are choices to be made. Once autonomy, practicality and best evidence-based practices are factored in, however, these parents may find their reasonable choices limited.

Not All Choices Are of Equal Quality
Recently, I had a mother come in with a seven-year-old referred by his school due to behavioral issues. The mother asked initially if I could refer her to a private-school setting where the initiative and advocacy skills that she saw in her son would be viewed as qualities to be encouraged rather than “problems.” As the history unfolded, it became evident that the child had exhibited behavioral challenges in two prior school settings. Documentation from the current school described a pattern of aggressive behaviors often directed at other children that required the child to have additional supervision in the class (a shadow). Suddenly, it became clear that ignoring this degree of difficulties was not a reasonable choice for the parent.

I gave that feedback and reframed the discussion to offer the following choices: You can choose to begin with a full multidisciplinary diagnostic evaluation to clarify exactly what the problem is or proceed directly to working on the problematic behaviors with play therapy and social skills, holding off on a diagnostic workup for now.

“These are your choices” is a common refrain in my office. You don’t get a choice of whether your child has Down syndrome, autism or cerebral palsy, but you do get a choice of how you respond, the priorities you set as a parent and your actions regarding systems and the many people you encounter along the way in your parenting journey.

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