Recently, I was a guest on a nationwide radio call-in program to discuss childhood disability. A mom in Tampa contacted the show to fret about the fact that she believes her son has a developmental problem and “the doctors can never say yes or no.” She asked, “What can I do to move them along?”
This mother’s valid concern is shared by thousands of others. And I’m very sad to say that worried parents in her shoes have been feeling stonewalled by the professionals for many years. My family discovered what that felt like back in 1985, when our baby began missing the usual developmental milestones.
I told her it’s well established by now that early intervention is critical for children who are at risk of having developmental issues. Just go ahead and Google the phrase “early intervention.” You’ll find wide acceptance of the position that good outcomes are more likely when the right treatment is begun early, rather than later.
Some websites claim that children perceived to be at risk “are routinely referred to early intervention” by their physicians. However, those referrals are not necessarily routine or timely, and even then the resources suggested to frightened parents are not necessarily helpful.
In most cases, referral is just the first step in what may be a long process of trial and error in locating somebody smart enough to provide what your child needs. There is also the problem of losing precious time while on a waiting list.
An autism researcher in my city was in the news last year announcing the results of a study showing that simple tests, which any pediatrician could perform no later than at a baby’s one-year checkup, would identify kids in need of extra help with a high degree of accuracy. That finding did not surprise me. Actually, I felt indignant that it was considered newsworthy, and angry that any doctors need to be urged to do the screening.
That was before I saw another doctor’s rebuttal. He said sometimes there are false positives, and it’s better to wait until you’re sure before starting to worry.
I talked about this with another father of a disabled child, who happens to be a physician, and he said the main reason doctors are reluctant to acknowledge developmental problems is that, “then they would be expected to do something.”
Most doctors do not know what to do about this. Or if they do have ideas, they also know that therapies are often not covered by insurance, or are controversial and politically charged. I think they simply don’t want to get involved.
Families, on the other hand, don’t have that choice.
Thanks to information available on the Net, some parents are able to find the information they need without their doctor’s help. Then, some have the determination, money, or whatever happens to be necessary to go ahead and implement an effective program without waiting for anyone’s blessing. Others are not as resourceful, or as lucky. This state of affairs is due to abdication on the part of the entire medical establishment. And it’s not new.
If you find yourself dealing with a pediatrican who seems uninterested in your concerns, don’t wait. Dump him. The next guy you see may be just as bad, but there are good providers out there, and again, the Net is a wonderful way to sift through the options. We parents owe it to our kids to do what we can. Remember: Whatever choice is made, we and our kids are the ones who live with the consequences.
Stephen Gallup is the author of What About the Boy? A Father’s Pledge to His Disabled Son. He blogs at fatherspledge.com.