The Diagnosis

My son, age 2

My son, age 2

I assumed that people would be curious about what is wrong with my son, what exactly makes him a “special need” kid.

My son has a severe speech delay.  His preferred method of communication (even now at almost age 3) is the point and grunt technique perfected at the age of 1.  He does know a fair number of signs from ASL, but he has trouble manipulating the last three fingers of each hand.  Needless to say, this makes it hard for him to communicate in this fashion.  Finally, although he can talk clearly and contextually correct whenever he is surprised or mildly stressed (in other words when he’s not trying), the rest of the time his 3 current words come out as if he were profoundly deaf.

What’s causing this severe delay? The short answer is that no one is quite sure.  He doesn’t nicely fit in any box and presents atypically to all of his diagnoses.  At the moment his tentative formal diagnoses are for dyspraxia and/or PDD-NOS.  It may be one, both or neither.

The dyspraxia is probably the one that is more likely since he does have fine motor skill issues with his hands, and he does have trouble performing physical activities on command.  (For example he understands potty training, even shows an interest in using a toilet, but can’t actually get himself to go when trying.)

Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is the catch-all autism spectrum diagnosis for kids who may have spectrum disorder traits but don’t fit into one of the other specific categories.  My son was labeled this mostly due to his immature social behaviors.  However, he made so much progress in the last eight weeks that the developmental pediatrician is rethinking continuing to use this label.  The school district declined performing an autism evaluation because they didn’t see a need for one.  My son has social delays but it’s hard to tell if they are caused by the inability to effectively communicate with peers or if the lack of communication is caused by the social delays.

Actually, we are very lucky.  And I know this.  My kid has no cognitive impairments (in fact I find his skill at problem-solving to currently be inconvenient) and his gross motor skills are fine.  He routinely “passes” as normal.  He successfully attended a mainstream preschool (after a rocky start), and still goes to a normal drop-in play care facility when Mommy needs a break.  He can read and write a handful of words, and he can sequence the alphabet and 1-10.  He’s never met a computer or online puzzle he didn’t like, and can do imaginative play both with and without prompts.  There are many people with issues much more severe than my child’s.  My heart goes out to them.  Some days I don’t feel at all like I can cope, and really, there is so very little wrong with my son, and so very much that is right.

UPDATED: My little spud is now 6, and a fully verbal kid! He made great strides through PROMPT speech therapy although the real gains in articulation came when he learned to read. Apparently, he needed the visual support of written words to form spoken ones. Huh.

Of course, that doesn’t mean we’re out of the woods. He still needs speech multiple times a week to help with general language comprehension and sentence construction. We still need OT multiple times a week to help with lingering sensory/reflex integration and overall coordination. However, thanks to OT, my kid can now write a scooter, print beautifully, and has started cursive.