Parents are always too hard on themselves

We had a great Easter weekend.  I was fortunate to be off for the entire weekend and actually got to spend four straight days with Javy.  But my body feels like it got run over by a freight train.  Friday, we went to Salt Pond and I found myself picking Javy up a lot.  Saturday, we went shopping with our friend, Aaron.  So in and out of the car, I was picking Javy up over and over.  Easter Sunday, we were invited up to Koke'e to spend Easter with the Emayo family.  It's such an electric atmosphere (think Big Fat Greek Wedding) and Javy was having such a great time.   But it meant more and more picking up Javy, maneuvering him around.  

Then on Monday, we had to go into town for a psych evaluation for Javy.  It was for the Department of Health, part of the process for getting services for Javy.  The original intake interview was back in October and the psychiatrist came all the way from Oahu just for Javy.  Honestly, I didn't know what to expect and I almost didn't come with him because I wasn't sure if I would be able to get off work.  We were in there for about an hour and what the psych evaluation consists of is an IQ test, which took less than 5 minutes and me answering a bunch of questions about Javy's capabilities.  The majority of the time was taken up by her going over Javy's history, which was right in front of her in a well written report that the original intake officer had already put together.  She even commented about how well written the report was.  This process is excruciating for me now, Javy is almost 9 years old.  Having to relive the past-all the confusion, the denial, and the lack of interest by other health professionals.

There is also all the questioning about family.  The way she phrased it was so odd.  Kind of in passing, she just said, in an assuming way, "The parents are intact."  I was confused because I said, "Yes." and nodded my head emphatically.  My initial thought when she said this was that we were still alive, like are bodies have not been blown into pieces-the parents are still intact.  But then she clarified, okay the parents are still married.  I'm like whooooaaa.  Nope, never been married.  Then she still made assumptions, okay the parents aren't married, but still together.  I had to put on the brakes, again.  Nope, never married, not together.  Oh, well, then how long has it been.  I'm like, why do I have to answer these questions, I've already been through this, it's right in front of you.  This lady gave me the heeby-jeebies!  

But she did that kind of thing throughout the interview.  "So Javy's been this way since birth, what did they call it."  I had to spend most of my time correcting her and back-tracking.  My next favorite moment was when she kept trying to diagnose Javy.  At one point, she said, "What about Rett's Syndrome?"  I'm like already been tested, it was negative.  She said well, it's not detected with genetic testing.  (One of Javy's first genetic tests was for Rett's Syndrome, I know this for a fact.)  But I chose not to argue with her and just said, okay, that's interesting.  Later, she randomly just threw out the statement, "It's funny that he hasn't been diagnosed."  In my head, I'm thinking, "Maybe that's my problem, it's a joke and I've been taking it so seriously."  But, again, I kept my cool.  I still kept my cool, when she asked me if Javy had any weak areas (on his body).  I said, "No, Javy is super strong."  She replied, "Oh, then why can't he walk?"  as if my knowledge was in question about my son's body. 

When my interrogation was over, we commenced the purpose of our visit.  She handed me a questionnaire, a DDST, I think it was.  It was basic questions concerning things that Javy could do.  And then she focused on Javy trying to get him to point at pictures on a flip chart.  This was his IQ test.  I heard her ask, "What does an elephant eat?"  I looked up and there was a grouping of pictures, one of which was a peanut.  I'm thinking, "OMG!"  I forgot to tell Javy about the peanuts.  The IQ test took literally less than 5 minutes, if that.  She informed that she didn't get much response, does Javy point at pictures at home.  Ugh, here we go again.....  No, he just listens.  (I don't read him picture books anymore).  I read him Bible stories and Dr. Seuss books.  

Even though, I truly believe the lady was out of line and unprofessional, it still makes me re-evaluate myself.  How much of it is my fault?  I never give Javy a chance to do things for himself.  And I never make him point at pictures.  I know, deep down that this lady only spent a short amount of time with my love, and could never truly know Javy and who he really is, but these situations just pull us out of our own little world and into the world's reality.  And I don't like it in there.  Here we go again....

What is communication?

It feels really wrong to say that Javy can't speak or Javy is nonverbal.  I'm just not at peace with that expression.  But when people ask me what Javy's diagnosis is, my response is generally, "Well, he's undiagnosed.  He just doesn't walk or talk."  It's the simplest way to put it, but it's not accurate.

I just don't see him that way.  As his mother, I know what he wants.  I can follow his facial expression and his eye gazes.  I can decipher his words, and I do believe that he says words.  I hear him utter "mom", "night", and I even found myself responding to some of his sounds tonight with, "I love you, too".  I truly believe that was what he was saying, because I had just gotten through singing the "I love Javy and Javy loves mommy" song.   I see him as a bright, capable, understanding boy.  I even forget sometimes that he even has issues, like when I take him for a cruise in the truck, with his baseball cap on and the windows down and he's just giggling the whole time.  But sometimes, I think that we just live in our own little world.

I kind of got a reality check whenever I went with Javy's 3rd grade class up to The Koke'e Discovery Center.  I watched how the kids looked at Javy when he was eating or drooling all over himself.  Or when he'd laugh hysterically for no apparent reason.  But the kids are so good with Javy.  They were interested in making sure that Javy got to participate in what they did and were worried about him when he took a spill in his wheelchair.  Those are going to be  his classmates for the rest of his public school career and I hope that they will get to spend enough time with him to see what I see.  Because it's fun living in Javy's world.