Parental Input Forms; or "Yes...BUT LET ME EXPLAIN."

I am the Queen of Paperwork.

It's a duty that fell to me pretty early on in my marriage.  I married a veteran.  Do you have any idea of how much paperwork that generates?  Benefits, schooling, loans, withdrawing from our TSP...all of it usually involves pages of forms in triplicate.  I can rattle of my husband's social security number with more confidence than my own.  My printing is smooth, as legible as a second grade teacher's, neat rows of uniformly-sized black letters, and no one even knows what my husband's actual signature looks like anymore...not even him.  

My check marks are flawless, I keep copies, I leave nothing blank but instead firmly write N/A where it is applicable.

If filling out paperwork were an art form, I would totally be Van Gogh.

Until now.

Junior had his pre-kindergarten screening several weeks ago.  I was worried that he would refuse to answer any of their questions, that he would clam up and shut down like he often does. But I was wrong - he interacted and answered their questions the best way he knew how, and before we left, the Special Education Director came to speak with me about the very great possibility that Junior would be referred on for further testing in order to get him enrolled in the Special Education program.

I am not going to lie: It was a blow to my heart.  I knew he was behind in some skill sets, and that his social and emotional skills were also behind, which is why he is going to be evaluated at Children's Mercy.  But here was this very sweet lady telling me that there was some real issues in the way that Junior processes information, things that I never even saw because he's so verbal and so bright in so many ways that frankly, I never had much concern.  

For example, when asked what's wrong with a picture, Junior will tell you that nothing is wrong with the picture - and he is right.  The picture isn't torn, or ripped, or stained - the picture itself is fine.  It's getting him to understand that the picture represents something...but he is so literal-minded that getting him to see that is an obstacle.  I could give you 47 other examples of how his answers weren't wrong, exactly...just not right, either.

So, Justin and I were prepared when we got the call the following week with Junior's scores. What they were able to score was very low, and many other things they couldn't score at all. The SpEd director was again very kind, and helped us both realize, as parents, that this was actually the best, most positive path we could take for our child...and I wholeheartedly agree.

I don't know if knowing that has made me cry any less, though.

And so we received a very detailed "parental input" form through the mail.  I immediately opened it, set down at the kitchen table with my nice, black, form-filling-out pen.  I filled out all the normal stuff - the name, the DOB, the parental names, the address...and then I stopped.  I read it.  I read it again.  And then I put it on top of the refrigerator, telling myself I had 30 days, and that testing won't even resume until August...I put it away because I didn't like the questions. 

I got it back out today, because hiding stuff (literally) doesn't make me stop thinking about it, and I decided that the best course of action was to just do it.

And so I am reading things like What best describes your child?  Check all that apply: Easily frustrated.  Check.  Pushes limits.  Check.  Bothered by noise.  Check.  Anxious.  Check. Difficulty getting over situations.  Check.  Check.  Check.

And I'm filling out things like Please provide any other relevant information that may be helpful in determining your child's specific needs with "Obsessions with vacuums, fans, outlets and drains.  Cannot be deterred from talking about them, building them, etc.  Prevents him from learning other skills or interacting appropriately with other people."

Are you concerned with diet?  Yep.  

What other areas are you concerned with?  EVERYTHING.

And with each answer, I am writing in tiny, cramped letters, adding asterisks with corresponding asterisks to qualify my answers, scribbling "see backside for more info" and all of it seems so damned negative, and I am getting sick to my stomach, thinking, "Jesus Christ, why wasn't I concerned 6 months or a year ago?  What the hell is wrong with me?" and I am also thinking, "Yes, he is all of this - he hates letters and being touched by strangers and beeping noises and yes, he has seizures and yes, he freaks out if you don't serve his American cheese slices just so and yes, yes - he does know his shapes and colors, but do they need to know that he doesn't understand the concept of shapes and colors, that he has memorized what a triangle looks like but he also demands to know what shape 4 o'clock is and whether Wednesday is blue or green?"

And by the time I finish, it's smeared with ink and things have been scribbled out and then re-added and it all adds up true - it's all him, but it isn't him.  Where's the part where I can tell them how sweet he is, how after 8 hours of mind-blowing, non-stop activity, after I've washed the day's accumulation of grime off his perfect, sturdy little body, that his favorite thing to do is sit on my lap and sing songs?  Where's the part where I can tell them how funny he is?  How he laughs so hard sometimes he collapses, how sometimes he laughs so hard he toots and then laughs harder while crying, "DID YOU HEAR A DUCK?"  Where's his helpfulness?  His creativity?  He may not be able to draw a shape, but he can build a vacuum out of mega blocks that would put an 8 year old to shame.  Where's the part where I can tell them he wakes up every morning and wants me to open the blinds right away so he can shout "GOOD MORNING, WORLD!"  Where can I put his happy nature?  His love of music and dancing, how tender he can be, how protective?  Where do I tell them that he is, in our home, the center of our universe, that he is our very heart?

I will tell you - the back of the last page.  That's where I put it.  In neat, uniform black letters.  With no cross outs, no addendums, no asterisks to qualify what I wrote.  

Is it relevant to them?  Probably not.  Is it relevant to my son?  Yes.

Because you see, the whole concept that there is something different about my child doesn't phase me, because frankly, we have known that for awhile. And I have even gotten over this irrelevant fear I have had about "labels" because if getting him "labeled" as something - whatever it may be - is how he is going to get the help he needs to succeed in this world, we are okay with that.  Labels, after all, are much different than limitations.  And at the end of the day, there is no label or diagnosis that could ever stop Justin and me from being so proud of exactly who our son is - there is nothing anyone could say that will ever make us doubt that our son is amazing and perfect.  A label is nothing.  It's just sort of like...well, "handle with care."  Sometimes "open at your own risk."  Sometimes it's "fragile."   

A label does nothing to change the content of his character.

What does bother me, at night, after my son is fast asleep, perhaps clutching his dust buster, or maybe his favorite battery-operated fan, is the realization that the world will not see him through his mother's eyes.  What frightens me is the fact that I will not and cannot always be there to interpret the world for him, and, in turn, interpret him to the world.

But what I can do is fill out this paperwork, giving the people who need to know him everything they need to know...and everything I want them to know.  And, in doing that, I'm helping my son take the first step to becoming his own interpreter.

There is such a huge part of me that wishes I could just keep him home with me, making hand puppets and letting him vacuum up cracker crumbs and playing in the dirt.  But I won't do that.  It isn't possible, and it isn't fair to him.  Or to anyone who is lucky enough to meet him.

And you know what?  You're welcome, world.