Thursday, May 17, 2012

little things that mean more than a little



Trevy is in the process of being evaluated for Home Based ABA.  While I can’t (or is it won’t try to) really give you the scientific breakdown of Applied Behavioral Analysis, I can tell you that this therapy is working wonders for Trevy!  Every letter, shape, number, self care ability and even some of his communication gains can be traced back to his school based ABA program.  His school based ABA is focused on academics.  Home based will be focused on life skills.  But I don’t want this post to get muddled down with too much text (somehow I’m thinking that’ll be a fail In love) because that wasn’t even my point.  Nor is my point trying to steer anyone else towards ABA.  It’s not the right choice for every child.  But it is for Trevy.  It’s part of his story.  A positive part.  I cling to the happy things.  So I give ABA a shout out every now and then on my blog even when it may not be the point of my story.



My point is that the BCBA who was facilitating the eval blew my mind by picking up on a super subtle Trevy-ism.



I always qualify Trevy as verbal-ish.  I add the –ish because people often confuse the ability to say a handful of words with the ability to communicate.  Or maybe I just add it for my own benefit.  Even though there is NO way to wrap words around a description of Trevy I still choose to beat my head against the wall called Trying Anyway sometimes.  Don’t get me wrong, Trevor’s ability to communicate is emerging.  For instance, he threw up a couple weeks ago.  Groady, I know.  But the thing is, when I asked him if his tummy hurt he responded, “No, ear hurt”.  Guess what Dr. Pedi discovered?  He had a nasty ear infection!  That was a HUGE HUGE HUGE step in his ability to communicate!  Now mind you, his diaper (because yes, we’re still potty training) may be quite clearly fully loaded and he’ll still say “No” when asked if has poopy pants.  He’s also claiming he’s sick all the time now when he’s obviously just fine.  Like I said, his communication is emergingThere’s still a long road ahead of us, but at least we can see a little dust in the rearview mirror now.



One area we’ve been working on for a looooooong time is helping him respond appropriately when he doesn’t know the answer or understand the question.



The current way he responds goes something like this:






















That’s right.  When he doesn’t know what to say he doesn’t say anything at all.   He just goes silent.  He might look around like he’s thinking.  Definitely he’ll stick his fingers (or whatever else is available) in his mouth.  He’ll smile at you too.  With those big melt me now eyes.  But he’s not sayin’ nothin’.



Which is why we’re trying to teach him this strategy:





Maybe you caught his other response when he doesn’t know what to say?  He repeats back what you said. 






It takes someone very tuned in to catch these little subtle-isms.  Not just tuned in either.  Trained too.  Because (shocker) I had an “aha” moment during a Speech Therapy session when said therapist taught me that his repeating back or going silent was his way of communicating that he doesn’t understand!  He was really telling me something.  I just wasn’t hearing it!






was followed by DUH! 



How could I have missed that?!



The curse of The Mommy Guilt.



I’m lenient on others though.  Like the BCBA (see, I’m getting back to my point) who was facilitating the evaluation the other day.  I totally didn’t expect her to cue in on little Trevy subtle-isms.  After all, she’s not a ST.  Or Trevy’s mommy. 



Which is why it totally blew my mind when we were chatting about his lessons and she casually mentioned that he goes silent when he doesn’t know the answer.  And he picks wrong answers when he’s bored.






I know it seems so little, right.  It’s just that it’s not.  Not at all.



I’m so used to people not “getting” (for lack of a better word) Trevy that somewhere along the way I guess I’ve stopped expecting (hoping? trying? educating?) people to notice those little things that make him…him.  That make him Special.  Unique.  Trevy.  Or maybe I’m just sick of banging my head against that dang Trying Anyway wall?   There are precious few (and by few, I mean I can count them on my fingers.  And maybe a toe or two.) that really, deeply understand him.  Parents of typically developing kids notice his deficits.  Parents of Special Needs kids are often blinded by his successes. People that spend an hour with him think they have him figured out.  People that see him once a week make assumptions about what he can and can’t do.  It drives me bonkers.  And sometimes even induces a good cry-it-out fest.  Very few see the full monty.  The trials and the triumphs.  The guts and the glory.  The hope mingled inextricably with the heartache.  And everything in between.  Precious few notice that when he goes silent he’s actually saying something after all.



It’s so subtle.



So miss-able.



So easy to over look.



That when someone does notice…






…it’s a really, really big deal.



Which may or may not also be responsible for a good old fashioned sap-fest.






The Scott Family said...

Oh how I wish you lived closer, Trevy and Deacon would be BFF's! I am so glad I found your blog, it gives me hope for progress in the future. We just called our first ABA facility today and are waiting to hear how much our insurance is willing to help out.

MJStump said...

Oh how I love your posts :) Love you have found a way to type how I think and feel so often.

Ugghh...totally get ya when you talk about how people see Trevy, or how they think they know him so well.

After a year, Kylie will finally play with all the kids from our church group without us around....yet, she always comes back for snacks and to go potty. People think we never feed her, but this is her way of escaping from the play time with all the kids...its too much, and she doesnt know what to do.

Susan Case said...

You have a wonderful blog and beautiful post and photos. I'm your newest follower from KBN. My daughter has a seizure disorder and a Vagus Nerve Stimulator which has helped - but not cured her disorder. Our prayers and hugs are with you and your lovely family.

happy's mommy said...

Mommy Scott (how do I not know your first name?!) and you girls too. And your preciously unique little ones!

Susan...thank you SO much for stopping by and ditto our family to yours!