Replacing the NG Tube/ Ezra Teaching Oliver to Read

Since I finished my residency several years ago, I haven't been awoken from a dead sleep to put a tube into someone.  That streak ended this morning, but fortunately I didn't have to run anywhere and nobody's life was immediately at stake.

It only took three days after discharge for Oliver to work the tube out of his nose with his random baby arm movements.  And then only three attempts to replace it in the correct place.   His little swaddle blanket served as a straight-jacket and Rachel held his squirming head in place.

Attempt 1 was properly placed but failed due to inadequate tape adhesion to the little guy's face.

Attempt 2 resulted in the tube not being taped at the correct length (Oliver: "Daddy, please put your glasses on next time.") Don't tell our pediatrician that it was only halfway through the feeding that this error was noticed (no harm done).  At least this finally prompted us to find the stethoscope that was sent to us to help confirm placement.  (See here if you are really interested in learning about confirmation of correct placement of an NG.)  And no, my stethoscope is not at home and I'd probably need to autoclave it before using it on my son.

Attempt 3 while I took Ezra to school, Rachel gently advanced the tube a little bit and re-taped it, all while he was asleep.

We'll see how long this one stays in place.

Everything is going well otherwise and Oliver seems to be "chunking up" as Mommy puts it.  Fortunately, his monitor has only alarmed a few times, mostly due to excessive squirminess.

Liberated from tubes...temporarily.

On a separate note, in preparation for Oliver's arrival, Rachel creatively tried to prepare Ezra for the significance of the event.  Out of all of her efforts, at least one stuck really well with big brother: The idea that someday (I think very soon, in E's mind) he'll get a chance to teach Oliver to read.  So even right now, when Ezra's attention is called to his little brother, he announces, "I'm going to teach Oliver to read!"

You may know about Ezra's reading ability.  He has demonstrated a very innate understanding of phonics that dates back to before he was two, which is a source of continual fascination for us.  We've been asked before, "How did you teach him how to read?"  and "Did you use (X product advertised on the radio) to teach him that?"  Usually, the question comes from a well-meaning parent of a "neurotypical" toddler.  The assumption behind the question is natural.  Don't we all need help to learn how to read?  Apparently, not Ezra!

My internal response to the question is a question: "How did you teach your kid how to point at the balloon and look at you?" or "How did you teach your child to say hello to you most of the time when you walk in the room?"  The former skill of alerting another person to a stimulus/sight through non-verbal skills is called joint attention.  The relative lack of this usually innate behavior is thought to be a key deficit in children with autism.   

Right now, I'm typing away at a free wi-fi spot while I wait for Ezra to finish school for the day.  We are fortunate to send him to a school where he receives one-on-one ABA therapy throughout the week.   The Holy Grail for autism would be to identify specific preventable factors (see this for one example, although the results need to be confirmed).  However, once autism spectrum disorder is suspected, interventions can serve as "secondary prevention," hopefully preventing the "complications" of the disorder.  Although there is no sure way to prove it, we believe this therapy has been quite beneficial to Ezra and there is an evidence-base to suggest that early intervention in toddlers with autism can make a very significant difference (in terms of learning to function socially).  Indiana is one of a minority of states that mandates insurance coverage for autism therapies, for which we are eternally grateful.  The therapies may be the difference between Ezra wanting to read by himself versus sitting down with his little brother one day to help him read. 

(Rest of post is mildly political...)

This is why my heart broke today when I read this story about workers at Indiana's Bureau of Developmental Disabilities Services telling parents to drop their children with significant developmental issues off at homeless shelters.  The children/young described in the story are, for the most part, past the point of "secondary prevention,"  (although not entirely) and most will presumably need intensive services for the rest of their lives.  There may be more to the story, but the basics of it are not too surprising.  There is a long waiting list for Medicaid-waiver services to cover the day-to-day support that older children and adults with developmental disabilities may need and funding for the services has recently been reduced.  I don't stand in judgment of the front-line caseworkers in these situations.  I'm certain that many of them are heartbroken, too.

I'm not certain if there are data out there to support this, but with knowledge of the benefits of early intervention, I firmly believe that stories like this can stimulate an opportunity for the state to support early intervention programs in a more robust manner.  I'm guessing it would be an economic plus for all in the long-run: added cost on the front end, but fewer kids requiring long-term services, fewer families in economic ruin, and (if the stereotype of autistic adults being very honest is true), more taxpayers in the economy!  I really don't think it's a leap to suggest that money would be saved in the long run, and money talks, even though it's the child's outcome that is the most important.  The main barrier to the development of early intervention programs is that they require a high volume of specially trained individuals which I'm certain the state currently lacks. 

I'll step off the soapbox- thanks for listening and understanding my passion, even if you don't agree with the politics.