Friday, October 8, 2010

United We Drive

I have a Facebook page, and for those of you that actually use it, Facebook has a Status Update, which I hardly ever actually use cause I always feel somewhat jackassy cause it only sounds right if you talk about yourself in a sort of Charles Barkley/third person kind of way.

It's weird. Let's face it.

'Kenneth Lilly is chompin downn the bestest nachoes EVER at Joltin' Jack's Nachoe Shack! Take a look at tis awesome picture he took with his new Droid! Come get ssome my bitches!!!!!!'

Although some people, a lot of people, don't even bother with the 'he/she' or with the complete sentence structure, which is totally fine I suppose. That kind of thing really gets to me though, totally tossing out any kind of sentence structure or grammar or acknowledgment of proper language usage.

That and mobile phones with cameras. But I digress.

Does it really matter anyway? We'll all be killed when the LHC is turned on and we all get sucked into a black hole, so why should I care about grammar usage on a social networking site?

Anyway, about a month or so ago, I casually mentioned on my Status Update that I was making a purchase based on total emotion. An IMPULSE BUY, as we like to call it, and here is that Status Update, in which I totally toss out any kind of sentence structure or grammar or acknowledgment of proper language usage. (Click to enlarge and read.)

It quickly degenerates at the end to me and my Mom talking about her hair.

Thank God for Facebook. If it wasn't for Facebook my Mom and I would never get to talk about her hair and I would have no friends.


So the purchase, the vanity plates, arrived, and you'd think that they were cursed or something.

First, they arrived at one of the worst possible times. Jen and I were hip-deep in some of the worst shit we've been in since we got married, and we were on the brink of total marital meltdown (this is part of that '300th Post' tome that I will eventually publish in tidbits, as I am doing (sorta) now.

Remember though...CONTEXT...bumby roads in marriages and special needs kids? They go together like chocolate and peanut butter. It happens. Frankly we are both surprised it hadn't started becoming more of an issue sooner. So the plates, representative of the '4' of us, our little family of 'Lilly's' all fighting this battle together arrive, and I'm not even sure if the '4' of us are going to be together for much longer.

Then? I look inside the envelope? No county stickers. So I can't even put the new plates on. Thankfully this is the ONE year out of 26 that I have been driving that I actually did my registration early so there was time. But now I gotta call the county. Have you ever tried to call your local county government? In a small town? It's fun. You should try it sometime. Eventually, I got my stickers, but it took a while.

How often do we change our PLATES...we usually just put a fresh sticker on top of an old sticker, right? So, when I proceed to remove the old plates, one of the bolts snaps off as I am trying to take it out. The thing had rusted, and its interior was stuck in there NICE and tight. I tried everything short of dynamite, including buying a diamond bit, to get that thing out. Nothing worked. So I had to use duct tape for a while, so that at LEAST I could drive.

Thank God for Duct Tape. I love you Duct Tape. If you were a woman I'd have sex with you. You fix everything.

The weekend my Mom came up her husband Ken, (my stepfather, though not to be confused with the Evil Stepfather mentioned previously in Blogzilly as this is not the same man, he go bye-bye), took a shot at it. He managed to get a smaller hole drilled into the stuck bolt, don't ask me how, so we were going to just use a smaller bolt for that particular spot on the car.

But Ken wanted to get the whole thing out, so he went to Lowe's (he's a Lowe's man, I'm a Home Depot man...oh who the Hell am I kidding...I'm not a MAN) to get a special drill bit called an 'Easy Out'. He got one, and then proceeded to get it stuck inside the hole he had managed to drill into the bolt.

Easy Out my ass.

Solution? We just drilled two new holes a half an inch higher on the back of the car and used those to secure the plate and the cover to the car. Why the cover? Not vanity as you might expect. Practicality. When I got the plate, I was surprised that even the letters and numbers were not pressed. It was all screen or laser printed somehow. I am not sure how UV radiation will affect it, so I wanted to get it some protection. Hence, the plastic UV protection covering.

All that for a license plate. For a freakin' vanity license plate. Why go through the trouble? I still don't really know. Hell, I don't really know if Bennett really has Autism or not. His diagnosis of PDD-NOS seems to be reasonable, but again...remember, 1/3 of his brain is gone. That might cause a lot of symptoms that look like symptoms of lots of things. But the extra money spent supports Autism charities in Ohio, and that can't be a bad thing.

But the ultimate reasons go way deeper than that.

I've given it a lot of thought since I bought it on an emotional whim on August 17th, and I think now, after the time has past and all that has transpired since then, I think I have a better understanding of why I did it. I did it for no other reason than that I needed a symbol, I needed something tangible to see, to connect to, every day, and this made sense to me at the time.

But unlike Sam's bottle-cap on Cheers, for some reason that still eludes me (since I care so very little about my car, always have) I wanted something on my car, like the symbol on the side of the Batmobile, or the Ecto-1 License Plate from Ghostbusters with the Statue of Liberty on it since it is from the city of NY.

I needed a symbol of hope, so I went out and got myself one.

I need that symbol for days like today.

The day started with a two hour evaluation from the school system. Two people evaluating his skill sets and what he can and cannot do, and another asking questions of me and Jen about what he can and cannot do. This is all regarding his transition at the age of three out of what they call here in this state Early Intervention and into the Big Walnut Public School System of Delaware County, which takes over services for Special Needs kids at age 3.

Odds are he will probably still remain at Step-by-Step Academy, but we have lots of hoops to jump through to make sure that still happens, and to see how it will get funded. We can't afford it all out of pocket ourselves. Someone will have to foot the majority of the costs, the key will be who. Local? State? Federal? We don't know yet.

But these meetings drain a parent, when you have to admit to others and yourself that your child is as far behind as they actually are. Yes, you celebrate the milestones (inchstones) of progress and you happily cheer for your child with every step they take, no matter how small, but inside pieces of you are always deeply cut when someone asks you something like 'Can your child identify 20 objects verbally?' and you have to answer 'No.' Yes, Bennett can do many, many things, and I am grateful for those things. But there are many things he can't. Will he? Maybe. We just don't know. We can't know.

The day doesn't get any easier as it goes along when you realize that your child might not be feeling well today, but the truth of it is that you don't know, because he can't tell you. He feels a LITTLE warm but not running a high fever. He is screeching a lot, roaming a lot, moaning and crying a lot, but then sometimes laughing and sometimes playing, but then back to the screeching, not able to really settle into any one activity for long. Anxious, jittery, a bit scattered.

If you could only reach out to him. If you could only reach INTO him and meet him somewhere in the middle. I often use the analogy of saying that my relationship with Bennett often feels like we are both in the same wide open space, but there is a very intricate, complicated maze that separates us. The problem is that the maze is made up of invisible force fields or barely perceptible glass walls that neither of us can see. We only become aware of the walls when we slam our faces into them.

Occasionally we get lucky and we find each other through one of the openings, but eventually we lose each other again and have to keep struggling to find another opening. Some people say there are tools out there that will help me and help him to see these walls and navigate through them more easily, but it seems like nobody can tell me where these tools are or how to find them. Some people say this tool works better than this tool. Nobody has a single tool that is THE tool that does it all. I have to find a lot of the tools on my own.

That's what it feels like, a lot of the time.

In some ways, much of this analogy has made me ponder, very seriously, a dramatic change in careers, even here in my early 40's, just so that I can have a relationship with my boy. The key is just figuring out how to make it happen and what particular path I should actually take. I haven't figured that part out quite yet. This aspect of things is in an infancy of sorts. I have much thinking/research yet to do.

Today I have to tackle today, and to put it simply, there is clearly some need that is not being met, and that need is probably so basic in terms of 'kid need'. If I could just figure out what that need is I know that this day would turn out 100% differently. But I can't figure out what that need is. Does HE even know what it is? I wonder that sometimes too. I think he does. I'd like to believe he does, and that he just hasn't figured out how to express it yet.

But I'll keep trying to go through all the things on The List of things I know he likes or might need/want, see what works, see what doesn't, and hopefully hit on something that helps ease his pain/frustration a little. Hell...for all I know he's just as irritated about this morning's evaluation as I was, and since he can't blog, he screams.

For now, he's napping, and he's at peace. And so am I, for a while. My hope is that on the other side of Nappytime he's rested and feels better and we find one of our openings.

So yeah...I got this vanity plate. It says LILLY4.

And it means something.

At least to me.



  1. So much there to comment on but I just have time to propose one idea: Bennett is not hard of hearing. It must be very frustating for him to hear them ask you questions on what he can not do. I insisted in the evaluation that nobody was to ask any questions in Emma's earshot. She was not to hear anything negative. Just because he cannot do x or answer the question, does not mean that the answer is not right there struggling to get out.

  2. SD:
    YEAH. You think maybe I can talk my wife into making that her Halloween costume?

    Hmmm, I wonder. I don't know, you think he can really understand? Really? I'll have to chew on that one. I don't disagree that Emma can or can't, I just don't see it in Bennett. Of course, then here's the wave of Catholic guilt...ahhh, there, yeah...let it wash over me...maybe that's the problem, if I don't see potential in Bennett, who will? Aw crap, now I'm gonna go smack my head into the wall a few times.

  3. ...Duct Tape is wonderful and a sign that there is a caring, orderly force in the universe...

    ...Symbols are very important, and their chief power is in their ability to focus people's thoughts and intentions...

    ...Fantastic to see you breaching the 300th...looking forward to seeing more...

    ...Totally blows that there are supposedly tools out there, but no matchmaking service/interface that would help parents discover which specific tools may be good fits with their unique kid...

    ...and along that line, is it ok for me to ask questions about what Bennett likes/is drawn to/dislikes/etc? Maybe I can use this to try to find stuff to share with you...

  4. Nice :) Glad you got the vanity plates. I like them. I sorta have "vanity plate envy" actually lol. I hope Bennett felt better after his nap. And I totally agree, evaluations suck big time. I hate 'em.


  5. Great analogy! I am, of course, curious about this career shift idea of yours. Are we talking physical therapist...occupational therapist...autism specialist...something akin to a child whisperer. There must be people out there who could give you the tools. I'm sure you have i-net searched and read all the books...I don't have the answers, just know that the experts are out there.

  6. I get it. For me it would be a necklace. There are some beautiful Fragile X necklaces that I want to buy the next time I have some extra money.

    I know I've been here telling you to celebrate the little moments and you probably wanted to kick me in the face. I have sobbed over those reports. I have hung my head as the questions just kept coming and my answer kept being "no." It sucks, plain and simple. I mean, who wants to read "your child is mentally retarded"? Because they still say that. It's awful.

    There's good days, too, there are, but evaluation day is the worst. And it's never a complete picture of your child, in my opinion.

    As far as a means of communication, I vote for voice output devices. I will email you. If I don't, email me and bug me about it.


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