Old Sailor on a mission

Dear Bloggers, 

The Old Sailor has become a man on a mission. Since his little girl was diagnosed with a behavior disorder at 8 years of age, together with his wife he has worked tirelessly to get our daughter the best possible intervention. Today we are getting help from some professionals.

You are making a difference just remember this: You are a parent, not a doctor or a scientist.

But, when it comes to your child, you are an expert. You know that little face and whether it lights up when you walk into a room. You know your child's babbling voice and would be the first to notice if it suddenly fell silent. You know how she behaves when she sees a new toy, meets a new child, goes to a birthday party, or visits a shopping mall. You know what makes her cry and what makes her laugh. You've seen children playing in parks and squabbling at family dinners. You've seen her as a baby playing peek-a-boo and playing house. And you wouldn't be a parent if you had not compared your child with other children.

Of course, not every difference is a disorder. Far from it. But if your instincts are telling you something is wrong, that something about your child is quite different from other children or that something essential about your child has changed or become increasingly troubling, your instincts are probably right.You know when something is wrong. Children with anger outburts have parents who are persistently worried about them. So, if you are worried about how your child is reacting and behaving, you should take your worry seriously. It could be a warning sign.Parents have been diagnosing their children from early on. They know it, they feel it. They say it all the time, "I just know something's just not right . . . the way she does this or the way she does that . . ." And they're right, usually.

Some parents whose children are eventually diagnosed with a disorder realize that their children were different as babies. A few notice specific, clear-cut problems; many others have nagging, vague concerns that are harder to express.Other parents see signs accumulate over time or appear suddenly. When doctors ask the right questions, worried parents almost always speak up. And, once their child is diagnosed with a problem, even those parents who do not express their worries at first usually say that they knew "something was wrong." Often they "just burst into tears" when their fears are confirmed.

Still, you may believe that what you know about your child pales in comparison to what seasoned pediatricians, family physicians, and nurse practitioners know about the science of development. If you've taken your child to every routine checkup and gotten a clean bill of health, you may feel that's reassurance enough. Unfortunately, that's not the case. While most health professionals do a good job of assessing physical development and try to measure cognitive growth, far too few know how to assess social and emotional development or how to interpret the early behavioral signs of disorders like for example autism. Some well-meaning doctors ask about these topics, but use the wrong questions. Others rely on their own, too-brief observations. And, unfortunately, far too few children with developmental delays and disorders get the early, intensive help that could put them on a healthier path.

The good news is that you can do something about this. You already know a lot about your child. You are about to learn a lot more about how to assess your child's social and emotional development and how to get prompt help if it's needed. 

The pediatricians take seriously their responsibility to follow a child's development. They are not annoyed or put on the defensive when parents, often armed with questions gleaned from a stack of books or the internet, want to talk about their children's social and emotional development. We were advised to see a specialized group pediatricians and caretakers that are taking tests in a playful way with your child and try to diagnose what the problem might be.
We eventually found this more knowledgeable pediatrician. And so can you. Ask other parents and your family physician for recommendations. When you hear of a good prospect, schedule a time to go in and talk with him or her, preferably without your child along. If you choose a practice and later become dissatisfied, try again. This process can be time-consuming, but will be well worthwhile, especially if your child has a problem with behavior. Ideally, you will find a pediatric practice where:

*developmental screening and observation are a routine part of every well-child visit.
*doctors get to know the children under their care. That means that your child usually sees the same physician or nurse practitioner, whether for sick or well visits.

*other staff members are accessible and helpful. Believe me, one helpful receptionist or nurse can make a huge difference should your child need complicated care.

It  all comes down to you. The truth remains that no matter how good your pediatrician is, you are your child's best observer and greatest champion. You are the gatekeeper, the person who stands between your child and the rest of the world, deciding which experiences and people to invite in and which to try to keep out. For parents of typically developing children, being a gatekeeper means choosing the best preschool or the most nurturing nanny. It might mean banning certain TV shows or toys. If that's your situation, you may have to work especially hard to get what your child needs.

For parents whose children turn out to have challenges, being a gatekeeper means all that and much more. It means choosing the people who can best help you and your child to navigate an often uncertain path toward the best possible outcome. It means working with those people to decide what is best for your child, but often making the final decisions yourself. It means becoming a true advocate.
Never forget, you are uniquely qualified. You know more, and care more, about your child than anyone else. All you require is a little more information and a few more skills. So, learn more about why it's so important to act on your concerns and then take action.
Your child is depending on you. 

The Old Sailor,


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