Friday, 18 May 2012

We're Off to See the Wizard.....

Do you remember Dorothy's disappointment when she finally makes it to Oz, finds the wizard, pulls back the curtain and realizes the wizard is nothing more than a mere mortal?  That would describe our day at Kennedy Krieger.  In a nutshell, we learned nothing new, and were offered nothing useful.  It's ok, I know this is going to happen lots of times before we find some answers for Natey, it's just a bit frustrating.  First thing, they asked us to have Nathan fast prior to his 8:30 blood draw.  Ever made a highly routinized child not eat his breakfast? It's not a pretty picture.  Still, it didn't bother me, as it was for a good cause.  This was the blood draw that would look for signs of oxidative stress, and was specifically for children with regressive autism.  They won't say it, but they are looking at stress on the body from things like...gasp....vaccines!  You know, those things they swear up and down are safe safe safe?  In any case, we brought our cranky little boy in, and to their credit, they took us right up for the blood draw.  But.....the phlebotomist sucked!  I try very hard not to be judgmental of other health professionals, and honestly, I have always been in awe of how effortlessly phlebotomists can get blood, especially from children.  They really know their landmarks and most of them don't even seem like they need to "feel" the vein.  Yeah, this woman didn't have that all.  She kept dropping the needle on his arm before she started and then when she missed his vein she just sat there motionless, neither giving up or "fishing" (which I hate but is occasionally necessary).  And then that was it.  She wouldn't try again.  So we starved our kid, both took the day off of work, and drove an hour to their Greenspring location and already, 5 minutes in, he is going to be excluded from one of the two studies we came for?  What happened to grabbing a different phlebotomist?  Or taking a breather and then trying again?  Or heat packs?  I am not trying to be cruel to Nathan, not saying, stick him til it hurts, but COME ON.  I mean, they put IV's in preemies!  Heck, I drew blood from one of my oncology patients' THUMBS one time!  If she missed twice, then ok, but let's make an effort here.  I am mad at myself for not asserting my parental authority a bit more, but what was I going to say?  Again!  Come on lady- stick my kid!  And they couldn't try later in the day since by then he had eaten.

After the blood draw came the one test that both John and I found extremely interesting...and it actually did yield some reassuring data.  Basically, Nate was put in a high chair in front of a television and shown a series of images, one would pop up on the screen then the other, they would move, disappear, etc.  Some of these images were also faces.  They had a machine that was tracking his eye movements, to see if he would shift attention from the first object to the second object, to see what area of the face he was studying, to show if he had a preference of one face over another (familiar one vs novel one).  At the end of the test she was able to show us his eye movements on the computer screen.  He did shift his attention to the second objects, then shift back to the first object.  He did look directly at the faces, and always at the mouth.  The tester said this was an excellent indicator that he truly is trying to figure out speech and language.  He also would favor a novel face over a familiar one.  These are all appropriate reactions.  Something you really never think about, but fascinating.

The next step was the "typical" developmental assessment portion.  This lasted approximately two and a half hours.  As you can imagine, most of this was play based, as we are talking about a two year old here.  They only tested comprehension, receptive language today.  No expressive language, that would be later on in this second study.  There was nothing really new in the findings, he is severely delayed, think receptive language of a 15 month old.  On an emotional level, it never gets easier to watch your child struggle, or, in the eyes of the evaluator, fail.  This was the first time John has really had to sit through the full battery of tests with one of the boys.  Mom and dad are not really allowed to "help" or encourage Nathan much during the evaluation.  I could viscerally feel John struggling not to scream "wait he can do that!" during certain portions of the testing.  At one point, he asked me why I was so quiet (we all know I'm NEVER quiet right? :)).  I have found that it's better for me to just say nothing at all....because I might let out a primal scream if I open my mouth.  It's so damned frustrating to watch!  That being said, there were moments today when I was really proud of Nathan....some of his ABA stuff is really paying off.  He worked his puzzle completely independently, followed direction (under duress) much more effectively than he ever has in the past.  There were certain toys that he knew exactly what to do with and I would have to say this is the first time I have ever seen him do it without any prompting.  That was really encouraging.  Do you remember way back to my first post where I talked about Nathan just giving up after trying to pull his cup out of the diaper bag?  How he never even tried to ask for help?  I use that a baseline and am constantly assessing his communication based on how he "asks" for his cup.  Hilarious during this assessment.  The boy was obsessed.  He STILL doesn't say cup....but he does say "more".  And every time we snuck the cup away from him he would run back and forth between John and me asking for more.  Even if we distracted him for a few minutes, he would go right back to it when he remembered.  Eventually I asked the evaluator to move my bag out of the was the only way to make sure he understood the cup was "off the table".  Tenacious little guy and I am thrilled.  For me, it's tangible progress.

Once the evaluation portion was done, they calculated Nate's results and determined if he was eligible for this second study.  He was.  Then they "found out" which arm he was randomized to.  One arm involves school, at the Greenspring location, 4 days a week 9-11am for 5 months starting in late June plus daytime parent classes.  The other arm was parent classes at night.  We knew we were only going to be able to participate if we were randomized to the second arm.....and we weren't.  We were placed in the classroom group.  I should be thrilled.  But there is no physical way that this can happen.  His current ABA is 8:30 to 10:15 5 days a week, so I would have to switch him to this program for the next 5 months, then switch him back to his other program in November, and then when he turns three in December he gets moved to another program.  Too many transitions for Nate.  Not to mention the hour commute each way for a two year old, and the fact that, oh yeah, I have another child, and a full-time job.  I just don't see how this can happen.  I didn't give them a definitive no yet, but it's pretty much inevitable.  I am bummed.

So we came out technically no better than when we went in.  At least I know where the facility is?  And there are several other studies that haven't started recruiting subjects yet.  They have our permission to contact us for these.  I guess if nothing else, they know who we are, and they know we are willing to do anything within our power for our son.  So hopefully we'll get some calls....sometimes, what you think is your goal is not it at all.  Maybe this day served a far greater purpose....maybe there is something much bigger coming in the future that  we will now be privy to because of our actions today.  Fingers crossed!

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