Wednesday, October 3, 2012

Off The Charts...

Tomorrow morning, Gavin and I will take a trip to DuPont hospital for his first visit with a Developmental Pediatrician.

I'm not going to lie.  I'm dreading it.
I have always had a bit of a chip on my shoulder about Gavin's developmental tracking.  From way early on, it was clear that he was delayed.  Then he was hit with a very serious illness - RSV with Infantile Botulism on top - that set him back even further.  And from way early on, it was chart this...check with the point where I couldn't take it any more.

I used to show up for Gavin's well checks with a typed page titled "What Gavin CAN Do" and I would  list all of his milestones to date.  Why?  Because for the first handful of visits when the nurse would go over her sheet and ask "Is he holding his head up?" nope "Is he holding a toy?" nope "Is he..." nope, nope, nope.  NOPE!  I would always cry the entire drive home - and I hated thinking that Gavin could feel my sadness.

The thing was - and is - I just don't care!  I don't care about charts or graphs or what other kids his age "should" be doing.  I care about Gavin and helping him to be the best Gavin he can be.  It's a confidence shaker sometimes to get wrapped up in "developmental" expectations.
Actually - getting wrapped up in any kind of expectations isn't a great idea in any situation.  Hmm.  I just had me a lightbulb moment.  

I made the appointment with the Developmental Pediatrician begrudgingly.  It was suggested by Gavin's geneticist, Dr. Gripp, who I really trust.  She just thought it would be a good idea.  The appointment was made months and months ago so I hadn't thought about it until this week.  I started to panic today about what information I should bring with me.  I started searching through Gavin's medical files (I need a secretary for them - it's a MOUNTAIN of information) and reading through his CaringBridge journals and got lost.  It was a walk down memory lane - in a good way and in a very painful way.  I had forgotten just how challenging his infancy was.  Halfway through, I called DuPont and asked them what I needed to bring.  They said I had already filled out a packet with all of his developmental milestones months ago and mailed it in.


I tend to block out things I don't like thinking about.  I mean, really - does it matter that Gavin still wasn't holding his head up very well after he was a year old?  Does it matter that he was almost two before he pulled himself up to a kneel?  Does it matter that he's five and still eating purees?  They aren't going to tell me anything I don't know.  And I stopped comparing him to his peers a long time ago.  I just don't care.  Is that wrong?
Each time Gavin is evaluated by professionals and there is a written report that details his skills...where he falls on he fails in certain areas...I avoid it.  Seriously.  I don't read it.  All I care about is telling them all the awesome things he IS doing - he CAN do - he COULD do - and then working with them to come up with a plan of action.

Nothing is going to change the fact that Gavin is developmentally delayed.

But...nothing is going to change the way we care for him, help him, love him or treat him if they tell us what his "developmental age" is.

Each day, Gavin does some little thing that makes me jump for joy.  (How lucky am I??)  Like today, his teacher told me he did something incredible.  If they thought it was a fluke when he first did it - he did it again to prove it wasn't!  During circle time, they were asking the kids to pass a paper die cut apple around.  When it was Gavin's turn, he reached over with his left hand (his LEFT HAND!) across his body to take the apple from his classmate.  Then he held it for a second before turning and handing it to the classmate on his left!!

Find THAT on a chart.

I have no idea what I'll hear tomorrow...or how I'll feel on the way home...or if I'll learn something new at all.  
All I know is - at this house, we look towards the future.  And wherever Gavin may fall "developmentally" means nothing to us.  Our love and acceptance for him is off the charts.

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