The Knife in the Heart: Developmental Testing in the Child with Known Delays

Every mother of a child with special needs knows, I think, what is meant by “developmental testing”.  Milestones, those all important milestones that we are of course not comparing with other children who are about the same age, and potentially doing more things in other areas with even though they are several weeks younger than your own child.

The American Academy of Pediatrics recommendations regarding “developmental screening” are as follows:

“The AAP recommends conducting developmental surveillance at every health supervision visit and conducting general developmental screening using evidence-based tools at 9, 18, and 30 months, or whenever a concern is expressed. In addition, autism-specific screening is recommended at ages 18 and 24 months, and social-emotional screening is recommended at regular intervals.”  

This quote was taken directly from the official website.  At a minimum, formal screening of all the separate areas, not counting autism— will be conducted at least 3 times.  In between, at all well checks, whoever is doing the well check will be asking questions.  Is your kiddo rolling over?  Does she walk?  How many words does he have?

Let me share a secret with you.

As a mother, I hated this testing. 

I didn’t just resent it. 

I hated it with a hate that burned like the fire of a thousand suns.

My Oldest Child was already in therapies.  I knew he was behind.  The pediatrician knew he was behind.  Everyone knew and there was a treatment plan in place.  So why bother putting me through this?

At the time, I said to anyone who would listen, “I feel like this is insult on top of injury.”  (It may have come out in a very whiny voice.). I alternated between that and— yep, you guessed it— “You could always just twist the knife you just jammed into my heart, you know.  It would have the same effect.”

My words had no effect on anyone but me.  Developmental screening tools still got passed out. I still had all the (negative) feelings about a “developmental screening tool” that didn’t celebrate any gains my Oldest Child actually *was* making– it just pointed out that there was a gap between my Oldest and same-age peers.  

With what I now know, and the distance of a decade and more, I can say that putting pen to paper confirmed to my conscious mind what my subconscious had been muttering about, down below the surface:

– that my Oldest was quite literally not going to be functional

-that as his mother, through some spectacular alchemy of guilt, I had failed him somehow

My brain tied itself in a knot with objections and negative feelings, trying to get away from the pictures and questions on the page, and no matter how supportive, gentle, and generally wonderful our pediatrician was? My perceived failure at the beginning of the visit meant that most of the constructive substance of the visit escaped me.

As a pediatrician, I must confess: I don’t understand why children with known developmental delays who are receiving private therapy need to be re-assessed by tools that are neither as specific nor as sensitive as the tools their therapists use.

I don’t stop the front desk from handing the form over. It isn’t their job to determine who gets a free pass on filling these forms out. Sometimes, though? Sometimes I have a child who is followed by speech, physical, and occupational therapy. I see the lines deepening around their parents’ mouths, and parental shoulders hunching under the questions that I hated too.

I am not ashamed to admit that I will often reach over, and take the paper from the parent, folding it in half. “We’ll talk about this later,” I often say (and we will, particularly if there is an area that isn’t being monitored by a rehab specialist). “Tell me what new skill your kiddo has learned to do since I saw them last?”

The questionnaire is like a knife in the heart, but I don’t have to twist that knife.