Playing the Game

"Playing the Game" is one of those phrases that slips out of your mouth at the end of a conversation.  It is similar to saying "We Keep on Trucking Along" or "We Just Go with the Flow".  

I had a conversation with one of AJ's therapists yesterday, which ended with me saying "We just play the game", and his therapist saying, "Exactly".

For the past few weeks, our lives have been centered around one question, "What's wrong with AJ"?  Let's not beat around the bush, people.  He's not talking.  He's not imitating.  He's not doing A,B,C,D, heck we could go into double letters AA, or even triple letters AAA.  So something else HAS TO BE WRONG. 

Back in December, I had posted about AJ's appointment with his development specialist.  The one where I was told something HAS to be going on, like a chromosomal abnormality, a genetic disorder or syndrome.  Where he told me AJ might of had a stroke at birth. 

After a long waiting period with insurance, by miracle the genetic testing was approved.  And I sat on it.  Seriously, who wants to take their kid in to 1) have blood drawn, because that activity is always full of fun 2) have tests drawn to see what "else" is wrong. It was a typical case if I wanna know, but I don't wanna know.

We should have the results soon.  In the meantime, I contacted AJ's neurologist and asked him to take a lot at his MRI done in 2007 explain EXACTLY which part of AJ's brain was damaged (his cerebral palsy) and whether or not there was an evidence of a stroke.  I made sure to pull out my old calendar and make mention of when the MRI was done and when we originally saw the neurologist. 

Ufta.  Looking at that calendar was hard.  Really, Heidi?  Its.a.calendar.  Yeah, it is JUST a calendar.  But its full of the chaos that was just beginning.  There were things scribbled everywhere, as it was a small calendar, and under the original neuro appt I had written Dad with a halo underneath (my Dad passed a half hour after we left the "Your son has CP" appointment).  A flood of emotion ran through me, included how much I hated the neurologist that day. 

Now? I love him.  Ok, maybe love isn't quite the right term to use for someone on your son's medical team, but I digress.  He's an amazing doctor, very laid back, and has a way of calming me.  He returned my recent call re: location of damage in the brain/stroke  himself.  He explained everything in layman's terms (at my request), which boiled down to this:  AJ's brain damage is in the areas that control the voluntary movements of the limbs and the trunk due to lack of oxygen and/or blood...during/or at birth...no evidence of stroke.

Ok then.  While I felt like I should have shouted from the rooftops and been uber relieved, I was kind if stunned.  I was expecting him to say stroke.  Because, come on, there HAS to be something else going on, right?

I really, in my heart of hearts, don't think so.  It seems that AJ's...ahem...(whats the correct word for this)...unique history, his late diagnoses of BOTH cerebral palsy and deafness cannot possibly be all thats challenging him from moving forward.  Nope, gotta be something else.  So lets run every test in the book, and try to cram, cram, cram this kid in a box.  A mold.  Something that textbooks, clinical experience, whatever, have told us existed and this is how you proceed.

Well, I would doubt that there is any child that has had the exact some experience as AJ.  Which truly makes does make him unique, doesn't it.  His history and journey has been unique and makes him special, as he has most certainly defied the odds against himself. 

AJ's skills are often underestimated.  Or it is assumed that he just can't do it.  Because he's stubborn.  Oh is this kid stubborn.  If he is not motivated, or if he's bored, or not challenged, forget it-its over.  In the constant pursuit of putting him in a box or mold, he's expected to do X, Y, Z.  "AJ put the blocks in the bucket."  What child, literally, sits on the floor and puts plain blocks in a bucket just for fun?  Maybe some, who might dump it out and make a game out of it.  But I am finding that AJ responds much better in play-type situations.

It is assumed, that if he doesn't do it right that very moment, he can't do it all.  Mark "no" or "emerging" on that checklist.   AJ isn't a puppet.  He is not a dog.  While I understand that AJ, just as all kids, need to learn to follow directions and in his case verbal prompts do something, I feel we are constantly telling him to sit, stay, fetch, drop in the bucket on command.  Ask him to perform like a circus animal or something.  While I understand the checklists, evaluations, and testing is necessary, it sometimes paints a very gloomy picture.   It is incredibly hard not to focus on the results, numbers, and levels.

I've been thinking a lot about the two families I know who have children with CP/CIs.  We are certainly drastically different.  But talking to these families renews my hope in AJ's future.  Because those kiddos defied their own odds.  The similarity?  All of our kids have CP and deafness with CIs. Yes, we are different, I know that.  Its been drilled into my head.  But that doesn't mean I shouldn't talk to them! Those children were diagnosed earlier, had early intervention much earlier, their journeys overall were very different than AJ's.  While we were able to work on AJ's motor skills from the moment he came home, his cognition, his vision, and most certainly his hearing and the ability to communicate came much later.  There was no therapist at our house when AJ was just month old.  He didn't truly tune into his world until he was given the gift of sound.  When he was given surround sound, he tuned into his world like we've never seen before.

His history is not to be overlooked.  While we don't want to dwell on it, his history is important.  It IS part of who he is.  And if you weren't there with us, I understand, it is hard (and sometimes a lot of people don't comprehend it at all) for you to understand it.   It is quite easy to get caught up in the sadness of his story and not view it from a logistical side. There needs to be a delicate balance between recognizing and understand AJ's history and moving forward without hesitation because of his history.  It took years for us to convince someone, anyone, that he needed speech therapy.  Why? Well, "With kids like AJ"....  Can I tell you how much I despise that sentence?  Move forward.  Don't assume he CANNOT, because odds are HE CAN.

Do I know AJ sometimes looks like he's in LA-LA land?  Of course.  Do I know he doesn't wave bye-bye?  Yes.  But I also know that he CAN wave bye-bye and at least now if you say bye-bye he turns around and looks you right in the eye.  He knows what it means when you say "Lets Go Bye-Bye."  Do I know he doesn't vocal play?  Yes.  But he's starting to. :)  Do I know he doesn't know his colors or shapes, or numbers?  Of course.  I also know its because we aren't there yet.  A big part of learning is communication.  And if he's behind on that, we'll then folks, he's probably not going to sing the ABC song to you today, now is he? 

But that doesn't mean he won't.  In the past few weeks I've found myself in a place where I've been beaten down so many times I started to fool myself into thinking these things are never going to happen, so why bother. So many people saying so many different things. So many things to work on, worry and stress about. The odds are against him, I know that.  They always have been.  Do I want to hear, in someone's professional opinion, that he won't talk.  Of course not.  Imagine, for a  moment, how you would feel if someone told you your child was not going to talk.  First, intense emotion.  Second, fight or flight.

We'll continue Playing the Game.  Playing the "lets see whats wrong with AJ" game.  Do I think AJ will talk.  Yeah, I do.  Tomorrow?  No.  But I truly think he has the capability to do so.  Well what does so and so say?  This one says maybe.  This one says only a few words intelligible to family who know him. This one says try an augmentative communication system, its easier.  This one says I think so, he just needs to figure it out and it will be a challenge.  

As his advocates, Jer and I say yes, he will talk.  And thats what matters.