Are The Pieces Really Missing?

Even though it has been 3.5 years since his diagnoses, I am still rather clueless about my son.  As a mother it is only natural to want to know your child. I have known him 5.5 years yet I feel like I don't truly KNOW him. Sure, I can describe a lot of his character and predict possible outcomes in certain situations. I can tell people some of his likes and dislikes. I can predict what may upset him and what may bring a smile to his face. I know all the places we can go to with success and ones that will be trouble. I know the foods he likes and dislikes. Of course there is the unpredictable.  A place I thought was "safe" could suddenly become unsafe....But I don't know what puts him together. I can have all the facts in the world about autism but still not understand how he is put together.

My son is as unique as they come. Every medical issue he has is not text book and autism is no exception. In our little world, outside of therapies and professionals, there are either those who raise their eyebrows when my son and autism are mentioned in the same sentence, or there are those who see a major behavioral problem and judge how we as parents react to it. Either we over react as the stress in that day overcomes our abilities to remain calm and orderly in public or we are to exhausted to do much at all and wait until he's hurting someone or himself or becomes horribly disruptive. I can only recall a handful of times where I have received a public acknowledgement for how well I may have handled a situation. You know. The slight nod and half smile. The passive pat on the shoulder (and I am not one that likes strangers touching me). And the verbal "good job mom". Good job? For what? Do you want to know what I REALLY wanted to do? I wanted to scream right along with him. I wanted to scoop him up in my arms and kiss away his agony. I want to make all the people and items that hurt him in this world disappear.

But the outside world does not know that.  He doesn't have a physically obvious disorder.  They do not know that he reacts that way because of his disorder. I am not ashamed of my sons disorder.  It is a part of who he is.  I wish there was a way to automatically zap the public with knowledge.  The knowledge to detect a child on the spectrum.  The knowledge on how to react/respond to it (even though even as his parent I still don't know how to!).  The knowledge to understand he isn't spoiled or badly parented.  I want knowledge, empathy, patience and understanding zapped into every human living on this earth.

But that is not how life is.  Life is full of questions, misunderstandings, ignorance and pain.  But, without all of that, I feel as though love would not exist.  It makes my love for my son that much more significant and meaningful.  That much more full and true.  Our love can not be duplicated by any other being on this earth.  My bond with him is beyond any other bond and I am so glad we have each other, because we certainly don't have the world.  I feel blessed to be able to experience that.

My son is not a traditional autistic or pdd-nos child or aspergian. The general public knows most about traditional autism, and then after that probably aspergers.  I have heard people mostly match him to aspergers. The ones that don't know his history or his layers. But it doesn't fit. He has the proper social interest which makes it so much more confusing. But. He does not learn like an aspergian. He lacks interest in learning any traditional academics. He doesn't know how to read. He can't count well. He doesn't care about it. He doesn't care about sea creatures or planets or dinosaurs. He hates books. Does that make him a traditional child with pdd-nos?  NOT AT ALL.  His father has pdd-nos and they are COMPLETE opposites.  His father stays as far away as he can from socializing, but Tyler CRAVES socialization......in a controlled setting.

He is highly controlling. And most people don't "get" what I mean by that. For brief explanations I describe it as bossy. But that's not it. It is not his intent to rule over other people. It is his intent to make sure his life is orderly without disappointment. He needs his environment to be controlled by him to feel safe and secure. So that outburst he has in public because he didn't get what he wants? It isn't because he is actively "being bad". Outsiders view it as inappropriate behavior. I view it as "how can we calm him down so that he isn't disrupting others" and I can only imagine that Tyler views it as "my world is not under control right now and I don't know what to do". Not actually knowing my son, I can only imagine that it's like seeing your favorite ball in the middle of the road with a car racing down and there is absolutely NOTHING you can do to prevent the destruction. Your heart races, your body either freezes (which, in case you don't know, this is when he shuts down and does not interact with people), or you scream even though the driver can't hear you because you know what could happen and you are frightened and you can do NOTHING to stop it (which is a tantrum or panic attack), and I bet there are some that would run right out in front of that car to save that ball (me, the mom, getting right in the middle of the war). Well we know the ladder ends up in more tragedy then there needed to be. Get in-between my child and whatever is "setting him off" or taking his world out of control, and that's when the train derails. There is no "helping" by the time you see that car coming around the corner.....

He is also an attention whore. He desires both negative and positive attention. In a psychological view, this may be seen as a cry for attention. Mommy and daddy do not give him attention. I can assure you that is far from true. We eat breath and sleep Tyler. No. Again. You have to look deeper. Under his layers. His negative and positive attention seeking ways are another form of control. OK, so on the outside he is seemingly acting out because he didn't get his way (his environment is out of his control), so he is going to get angrier and angrier. He will hit and scream. And we know that paying attention to that fuels it. He could suddenly go silly (yet still non-compliant), just his way of, again, getting more attention....which fuels it. Dig deeper. His attention seeking ways are yet another strategic way for him to control his environment. He prefers all eyes on him whether he's behaving or misbehaving. And when he could be in a great mood and he loses your attention, all bets are off and suddenly we are in that tornado of behaviors that make you want to crawl back into bed.

So I can't even break down his diagnoses to try and make sense of him.  Autism is currently an umbrella statement that covers a wide spectrum.  There are people that can accurately categorize their childs disorder under the autism spectrum...but still are unable to KNOW their child.  I can't even "categorize" Tyler.  Which is probably the strongest argument for him being placed in the pdd-nos world.  Those that state he resembles aspergers most are those who haven't spent the time with him.  I remember Tylers preschool BCBA stating within the first few months that he is likely aspergers.  Then when we are leaving the school at the end of the second year, she states pdd-nos best suits him....because there is no rhyme or reason, no concrete decisive MARK that places him in either place.  His history shows language and global delay, which is not as common in the aspergers world as is with the pdd-nos world.  And this is why he was officially diagnosed with pdd-nos when he was 27 months old.  Now his language is beautiful, age appropariate aside from typical autism pragmatic issues.  He is caught up globally but does struggle to learn. But not due to the capabilities of his brain.  It is due to the qualities of his disorder. 

I've come to terms with it.  It took me a long time to accept his diagnoses in general.  Then I hit the grieving stage of trying to make sense of it all as a step to trying to "fix" it.  I HAD to tare apart the spectrum to understand where he lived on it.  And from there I felt I could better understand WHO my son is.  But I came up empty.......  He's on the spectrum and he is who he is.  I now know that even if he COULD be placed in a specific spot accurately, we still wouldn't KNOW him....let alone know the autism side of him.  So I call it "Tylers autism".  Society and professionals can be comfortable with saying my son has pdd-nos, and factually I can say that because if you make a graph and check off symptoms and "qualifications" of pdd-nos and symptoms of aspergers, there would be more checks on the pdd-nos side.  But what makes it more true, is that a true child with pdd-nos honestly doesn't "fit" anywhere else on the spectrum anyways. They are a beautiful recipe of the autism disorders. Which is why that CATEGORY exists.  But really, my son isn't a category within a disorder.  As stated earlier, he is as unique as they come.  Our children (and when I refer to "our" children, I am referring to children on the spectrum) are as unique as they come. 

Despite knowing this information, we do not know how to approach it in the RIGHT way.  Why?  Because I don't think there is a right way. I can tell you that living like this is not easy and it is becoming detrimental to his future. After writing that I can see how sad and depressing that sounds.  I must assure you that there are so many AMAZING and beautiful things about the spectrum.  THERE IS! SERIOUSLY!  He says some of the most unique but amazingly true things that one would NEVER have connected.  He amazed his doctor yesterday by comparing the bulb that pushes air through the tool that looks at eyes (forgive my lack of medical equipment termonology)......  as breathing.  She stood there mouth gaping open and said "never in my 15 years has a child said that, and he is right!".  When he was 4 he asked me how an air conditioner worked.  He asked me if air was STORED IN A BAG inside the unit.  He requested a scientific explanation as to why your ears hurt when traveling down the highway with only one window open.  My son is amazing and I will never ever deny that. 

But reality is ups and downs....and it is the downers, the tough sides, the rough, endless mountains, that DO overshadow the brilliant and amazing.  People can sit here and say "grasp that aspect".  "Hold on to that".  But lets be real here.  Logically, that makes sense.  And I would more than love to do that.  How much EASIER life would be if we held on to the good.  But pain is very strong.  Saddness can easily control your life.  Balance is hard work.  THAT is the truth.  And as a mother of a child on the spectrum, balance is what we fight for every day.  We can only climb over one mountain at a time.

My son needs to learn how to function in our world.  That is fact.  It's the painful truth.  Because the future is unpredictable as is life. He needs the skills to adapt and cope. This is why we are doing ABA right now. Every request is a struggle and a tantrum and life should not be this way.  Of course it would be helpful to know how to do it "right".  But, no one knows how to do it "right".  Because we don't REALLY know Tyler.  So we can only go off of what we know works best and what seems to make the best progress.  So stopping the behaviors is what we must do through behavioral therapy.  Applied behavioral analysis.  He must understand that even though his world is out of order, he needs to learn to adapt and cope because our world requires it.  IT IS NOT FAIR.  IT IS NOT FAIR TO HIM.  We should be able to get inside him and understand.  We SHOULD be able to decipher how to teach him the RIGHT way.....the way that makes sense to him and does not cause this physical and mental pain to get through each session.  But we can't.  Because even though he is my son and I know his likes and dislikes, what makes him happy and what makes him said, I still to not KNOW him.

As he gets older I am able to more fully understand why kids on the spectrum are compared to a puzzle. The "missing pieces". But it isn't how it sounds. My son isn't "missing pieces" in the direct sense. He has all HIS pieces. It's the outside world...his friends, teachers, grandmothers, aunts and uncles, strangers, mom and dad.....that don't SEE the pieces. To US they are missing from our view.  We can't see the various shapes and sizes because in our vision they do not exist.  Just like our inability to see sound or hear certain decipals.  They are still there.  It still exists.  Just because WE can't see them, doesn't mean they aren't there.  We can't help but want to find them.  As though they are lost.  As though they have vanished from the face of this blue and green earth.  But we must rearrange our thinking.  We aren't looking for a lost item.  We are simply trying to see them.

They are all there.

-Tyler's Mommy