Sometimes it's hard to smile

I'm a reasonably positive person. I think I'm a realist, but a realist with rose-colored glasses.  I accentuate the positive a lot, but I have to say that WINK drives me hair-pulling-out crazy sometimes. And...in ways that SMILE does not.

It's hard to say why that is. I think I understand SMILE's autism more than WINK's aspergers.  If SMILE gets upset and tantrums, it's because I've done something "wrong." I've forgotten to pack a snack, I sprang a third stop at a store on him when I said there would only be two, or I've said something that he's wildly misinterpreted or taken too much to heart.  The point is, when SMILE tantrums I know two things for certain: I've broken a rule and I know how to avoid it in the future (or at least prepare for it).  WINK, on the other hand...

His tantrums are just as severe and sudden (more on that in a while), but the causes, the inciting incidents, are less tangible and so easy to miss.  SMILE is rule based. Those rules are black and white. Break them at your own risk.  WINK, however, is a concrete thinker, very literal, with how he takes in information and how he responds to information.  So, although communicating with him can be illuminating and hysterically funny, it can be exhausting and exasperating as well.


Let me give an example:  The other day, WINK brought home a test with a very low grade due to an essay question he answered incorrectly.  I asked him if his teacher had read the directions to the class during the test.  He said no.  I dropped the topic for a few minutes so he wouldn't feel overwhelmed. When I asked him about the test again, I started the conversation by saying,
       "Okay, Mrs. (Blank) didn't read the directions, right."
       "Yeah she did," he said in a tone that inferred many flavors of stupidity.
        "But you said she didn't read the directions during the test."
        "She didn't."
         (Sigh) "When did Mrs. (Blank) read the directions?"
         "Before the test."


And there it is.  Most people fill in the blanks when they are in a conversation and most people go to the next logical step on their own. If I tell WINK to find his shoes because we are running late, he should know that I also want him to put them on.  He doesn't. The answer to my initial question, did his teacher read the directions during the test, should have been "yes" because when she read them wasn't really important. What I wanted to know was if she had read them at all.  But, to WINK, he gave me the correct answer to the question asked.  The reason WINK scored so poorly on the essay was because he wrote about the wrong character.  The question was very clearly stated, but because all of the directions were read at once, WINK forgot the particulars of the essay question when he started writing on a different piece of paper.  I asked him if he had reread the question.  He said "no."  When I asked "why" (while omitting the "by God" part), he said, "I didn't think of it and Mrs. (Blank) didn't tell me to."


So, in all fairness, I have to ask myself what are DAD, WINK's teachers, and I supposed to do with that? We met  with Mrs. (Blank), a wonderful and compassionate teacher, today.  She is eager to hear our suggestions and desperately wants to figure out a way to, in her words, help WINK show what he knows.  But none of us want to spoon feed WINK information and give him the false security that people will continue to do so because he has Aspergers.  I know my son, and she knows her student.  WINK is a strong candidate for "learned helplessness," and allowing him to believe that there will always be someone to find a way around any  obstacle for him, will only be a disservice. Of course, I'm there! But he's too acutely aware of it.   The answer is that he needs to start self-advocating for what he needs.  But that's so much more easily said than done for him, a little boy who is petrified to look silly.

Ugh! My heart goes out to my little man. This has to be confusing for him.  It's just so frustrating to watch him say or do, or not say or do, what he should, but doesn't, know is right.  He's almost nine years old and in many ways I still need to guide him like a toddler when it comes to appropriate interpersonal communication.  He knows rules. He knows not to lie or call someone a bad name.  But he doesn't understand abstract ideas like why people are sad at funerals or why he can't ask "Can we go soon?" out loud in the middle of a party.  I'm ashamed to say it but, as he's gotten older, I've struggled not to say "What's wrong with you?" more and more. 

But I also know that this is the time that he needs me and DAD to fake understanding all this the most.  This time will make or break my son's confidence and I feel sick whenever I think about the challenges ahead. He may face bullies but I refuse to be one of them.  But, I have to say, it's so easy to get angry at him.

I mentioned that WINK's tantrums are just as severe as SMILE's.  But what is horribly unfortunate for my beautiful WINK is that he cries when he tantrums.  His little brother rages and those screams demand attention and a response from the people around him to change, to make it better.  But WINK's crying suggests weakness to even enlightened, well-read observers and the burden to change, to "suck it up," remains his.  I don't want it to be that way.  I want to keep the idea in my head that WINK, as with all sensitive people, will be so easy to crush with an unkind word so that I am as careful as I need to be at all times.  So far, DAD and I are doing a good job. The hugs and the praise we give both our boys  far outweigh our own temper tantrums. 

But it is getting harder.