Tuesday, October 12, 2010

For the Record

In the Comments section of yesterday's Blogzilly a good friend of mine posed a question. Now, Kim would probably prefer to remain totally separate from the actual blog subject matter but instead I'm going to pull her out into the light and embarrass the living shit out of her here.

Why would I do this to someone I consider a friend?

Well, mainly because I miss her and I know deep down she won't mind. After all, there was a time when we spent more time together than Batman and Robin. When we worked together as the Dynamic Duo of Production at Palisades Toys for several years from 2002 to 2005, we worked on hundreds of projects together and built not just action figures, playsets, swords, knives and resin statuary, but also what will likely remain a life-long friendship.

We've since moved on to other things professionally. She is working for a company in Maryland that I won't mention here because I do respect her privacy as far as that is concerned, but she is still creating new products, just not action figures and statues. And me? I've got my sights set on a Night Shift Manager position at 7-11. Which means...I'm currently 'in-between' job positions at the moment.

One last thing about Kim before I get to her question...you gotta hand it to her. During this shitstorm of the last couple of years, she has really stepped up her game. I don't think a day goes by that she has NOT sent me something via e-mail in an attempt to make me laugh.

Something like this.

I think she considers it her duty to try to make me smile every day, that's the type of friend she is, and that's what makes her such a great person to have in your corner, when you come back to your stool when the round is over, and your head is throbbing, blood and sweat is pouring from your swollen head and you are seeing triple.

She's the one who can make you believe, even when you don't, that you have enough gas left in your tank to get back out there and take another beating for another round. She can even make you believe that you have a chance to win.

And you just might.

So she's a good friend. Why can't I just get to the freakin' point, right? Cause this is CREATIVE writing, people!

Her question, yesterday, related to Bennett's vocabulary.

Can you give a list of the words Bennett will say without prompting (like maybe 'Daddy' and 'Cracker')and another list of words he'll say when coached (like 'cereal')?

Which is ironic, because on Sunday, during a quiet, a rare quiet moment with Bennett, I was communicating with him one on one and going 'Say ______' and he was saying '______' in response and I turned to Jen and said 'I should make a list of what he can and can't say right now so we have it for the record'.

I should point out that it doesn't really matter about prompting or non-prompting, because it can happen either way. It simply is a matter of Bennett's Choice. He can say a word if he wants to. We know this. He sometimes just does, he sometimes just doesn't. It's very strange. I don't understand his 'disorder', or whatever you call what he's got, to explain why this happens.

The technical term for the inability to recall a word when needed is Dysnomia. The surgeon said that because the Left Temporal Lobe was going to be removed he might suffer from this later in life. But I don't know if this is representative of that or if this is...something else. Welcome to a small slice of this life.

So FOR the record, and for Kim, here it is. Keep in mind that these words that Bennett says he says in what I call Benglish, which means that I understand them and Jen understands them, but you might not understand them completely on the first go unless I told you what each word was.

That means that the intent is there, the assignment of the word to the object or person is consistently there, and the pronunciation is either pretty good or in some cases is being worked on.

The List of Words/Names That Bennett Can Say as of 10/12/10
Momma (Sometimes Mommy)

There are probably a good ten I am forgetting right now. I can always go back and add them if I think of them.

And of course the encouraging thing is that he tries to repeat so many things you say, and while he can't always, the attempts are there and so the list keeps growing, and that is something that you hold on to on days that are more difficult.

Now, I believe, no I know, he actually understands and comprehends a lot more than these words. And although he cannot form any words into any kind of sentence or even into two words side by side, like 'Bye-Bye, Daddy.', he seems to understand so much more than he can actually put together himself.

His reactions seem to indicate as much to me.

Sometimes I'm very optimistic, downright hopeful about maybe one day having a conversation with the little guy. Other times, I get scared that I won't be able to, that one day we might reach his limit. You do what you can to try to control the fear and not let it control you.

You do what you can.

Or, you wait for the next e-mail from Kim, and hope it's funny.



  1. ...Hey Ken, do me a favor and check to see if Bennett can say, "mortified", 'k?!?!?!?


  2. Friends smooth out this journey a bit.You are lucky to have her.And she you.

    Nice list Mr.Bennett.Can't wait to watch it grow.

  3. Great post, and I love Kim. You need to read the blog of Tanya Slavko called Teen Autism (on my blogroll) -- she has an older boy with pretty severe autism who she never believed would talk and he did and he does and it's all amazing. I know it's dorky to tell these stories (people do it to me, too) but I can't help but believe that your smart Ben WILL string those words together...

  4. Don't worry about the sentences - putting two words together is a 50 word skill for all kids. So when you pass 50 words you can work of two word combos.
    Great progress.

  5. Kim
    No, but I will give 'wuss' a try. :)

    Zoey's Mom
    Yes, yes...she is very lucky to have me.

    I would never, ever discourage anyone to give anecdotal evidence or pass along stories of hope. And I appreciate it.

    What I have to learn is how to be more appreciative and how to measure my first reactions. Let me explain. My first reaction when I saw your post was 'That's great, but was the Speech Center of his brain removed the way that Bennett's was?'.

    Now, I didn't have to write that down and 'put it out there', but I am, and I am doing it NOT to make you feel bad.

    On the contrary...I am doing it to show you how someone like you does something good and I react, at first, with something...while maybe not 'bad' but certainly...tainted with negativity.

    I thank you for your support and your effort to give me what I sorely lack and badly need...hope. I write how negative my first reaction was to show you how hard it is for me to break through this...what can I call it...this...blackness, this crust, that the past 18 months (um, 43 years) has built up on me. It weighs me down. It makes my journey so much harder.

    In any case, I will check out your friend, and I will use it for a force of good. But I thought you might find it interesting to know how hard it is for me to cut through the crap to get to that point.

    I did not know that. I had Jen give The List a once-over, and she doesn't think I missed anything, but she agreed there are probably ten that he in on the cusp with...words that he imitates that there is absolutely no similarity to what I say compared to what he says but he says the exact same thing each time, so apparently HE thinks its correct so there is some 'aspect of Truth' to the word.

    I have no idea what that means, I just made it up, but to me if he says the same thing the same way every single time even if it isn't the way I say it, it's LANGUAGE of some kind, know what I mean?

    I just need to learn his language. :)

  6. So Ken...He's at 27 on the list with another 10 words that are on the cusp. So that means 13 or 14 on that and then words will start stringing themselves together!? COOL! OK -- sure, add "wuss" AND "mortified" with him and then you'll be down to just 11-12 to go!

  7. I think they are considered words as long as they are consistently the same sound for the same object. So when Emma says bayabuha for bellybutton I count that as the right word.

    A little hint: I took a speech therapy seminar last year called "getting children with autism to talk" It was a full day seminar for professionals but I called and got the parent rate which was around $100. I learned so much that day. The 50 words before combining was emphasised. Apparently that is the number for typical children too. They said if you try word combining before 50 you can even lose words.

  8. Need to add "Pops" to Bennett's list :)

  9. Kim
    Hopefully he'll be at 50 soon, though I would happily trade another full year of keeping his speech exactly where it is in exchange for total elimination of the Mirror Universe screeching and unsettling behavior.

    Where did you find something like that?

    I totally blew that one. Was he saying Pops when you were here?

  10. Hey Ken, just catching up on your blog... saw the picture of you, Kim, and Mike... and I thought "I just saw him last weekend!". Talking, of course, about Mike. He was running the show store at the NYCC on Friday and Saturday. I stopped and introduced myself and asked... "Mike, as in Palisades Mike?". He was shocked I recognized him, as it doesn't happen much anymore. Travis from Palisades was also there. It was pretty cool seeing them.

    You have an awesome blog, as always. I wish I had time to check it out more, but I do catch up as often as I can. So happy things are progressing (even though slowly) for Bennett.

    I have started my own blog back up, gearing up for my 30th birthday, and gonna celebrate the whole year with "30 Adventures with 30 Friends". Check it out if you have the time.

    ~Travis (Xander)


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