Sunday, August 21, 2011

Ulnar? I Hardly Know Her!!


This weekend has been...something else.

My skull is pounding. My neck is throbbing. And my arms? Oh boy...If this were audio I would do the best Dr. Zachary Smith impression I could muster and try to make you laugh with my best 'Oh the pain! The pain!' quote. Was Jonathan Harris actually ever confirmed to be gay? Not that there's anything wrong with that. I'm just curious.

I said curious, not 'bi-curious'.

I was speaking to a friend of mine the other day, who also happens to be my former Physical Therapist who I first met when I discovered I have a Degenerative Disc problem in my spine. Sadly, he lives in Baltimore and I now reside in Columbus, Ohio. Or I'd be seeing HIM right now instead of typing this.

I described the symptoms I am having. Neck pain. Elbow pain in both arms. Numbness and tingling in both arms and both sets of outer fingers. Inability to pick up a cup with my right hand sometimes. Can't grip stuff with my right hand (alright...keep the 'social life' comments to yourself!). Pain in my right forearm. Pain in my hand when I close my hand, etc.


He said that while I would need to see someone and get a 'real diagnosis', but that it sounds a lot like Ulnar Neuropathy.

Well...batshit.

I need that like I need a hole in the head.

He gave me some tips of some things I could do in the meantime to help, but I have to add this to my To Do list for stuff to try to work out after my surgery next Friday.

Yeah...surgery. A Tonsillectomy. This coming Friday.

One day before Bennett's 2-Year Surgery Anniversary. That's screwy ain't it? Not half as screwy as Bennett has been acting lately. Not a tenth as screwy as the hard copy we got in of his Psychological Evaluation last week.

On August 1st he had this Psych Evaluation done. And actually, the chain reaction that this evaluation started has led to some very interesting things, things that I am in the middle of writing about. (Consider this a PRE-EMPTIVE APOLOGY for the onslaught of the next five days worth of blogs...it is INSANITY the amount of writing there is, but its a free country...you don't HAVE to read them).


But anyway...these evaluations. They evoke a visceral reaction in a parent. And the physical copy evokes an even more intense reaction than the evaluation itself, and there is no rational explanation why.

It hits you with hurricane force.

Essentially? It is almost as if the last two years have never happened. His scores were not that far above the last time he took it, prior to the surgery, and he is so significantly and profoundly delayed that it makes me question every single thing we are doing for him as parents.

The problem is...I don't know what else I CAN do for him.

That's one of the issues with a kid who has multiple disabilities. And it leads to you asking yourself shitloads of questions, none of them the 'feel-good' kind.

Which disability, or disabilities, is at the heart of his lack of ability to process the data or learn what he 'should' be learning? Is the fact that the tumor was there, forcing the removal of some of the brain tissue, the cause of the problem? Is the fact that he had CATASTROPHIC epilepsy for almost seven months straight the cause for a severely damaged brain? Is that always unexplained right-sided area on his MRI somehow a part of this? And why the fuck is it always 'UNEXPLAINED'?


And why on the Psychological Evaluation did it say on his June 2011 EEG there was a Spike but there was no mention of this from his Epileptologist? Was it just something that was considered secondary and not worth getting worked up over since he is not having any seizures? Is his diagnosis of an Autism Spectrum Disorder more the heart of the matter? Did his premature birth play a part, even though the people involved say nothing happened? Why was there that notation of a dusky color? Should I be going THAT far back for answers?

And of course, why is his behavior, which seemed to be under control, starting to worsen again? Up. Down. Up. Down. That is the nature of Life With Bennett. This weekend, particularly, has been crazy with that. The screeching is back. The biting. The self-injury. Why? Why now? Is it related AT ALL to my concerns about his swelling on his head?

This is why my head hurts. And since I cannot take any Ibuprofen this close to my surgery, I am limited to strictly Tylenol.

You don't know, as a parent, whether or not to cycle back and go crazy with analysis, or what. You don't know whether you should schedule a whole slew of new tests to see what you might be missing, what piece of the puzzle you are overlooking. You also wind up looking at your son's head and you don't know whether or not there is anything salvageable left inside there.

That's such a shitty, helpless feeling, and a thought that you hate thinking. Not long ago, I once posed a question to many of you...should I go digging back through old movies, looking for clues? I was in such a dark place then, and I'm not there anymore, and I often wonder if I should visit those movies now, and see what I can find.

Many of you might still say no, don't do it.

Jen actually would probably advise me not to. She always did. Though she STUMBLED on one that she did not mean to, and it got all of us a little weirded out. In it, pre-surgery, Bennett was mimicking me saying 'Hi Dadda!' very clearly. Your typical 16-18 month old thing to do, right? I remember those days well, he used to seize up like a mufugga all day long too. Those days SUCKED.


And here we are, over two years later. He cannot mimic 'Hi Dadda!' at all. Not anymore. He CAN say 'Daddy!'. And much more clearly DAH-DEE, not DA-DA. He CAN say 'Hi!'. He cannot, however, say the two together. And if you point to me and say 'Bennett, that's Daddy!' and he says 'Daddy!' and then you point to me again and say 'Bennett, who is that?' he says 'Keecol!'. His word for Crystal, the Home Health Aide.

It is inexplicable to me.

Things could be better. Things could be worse. It is important to always keep perspective. I realize this.

Last night, I was sitting on the sofa, and Bennett brings up a book, sits down besides me and hands it to me. This means he wants me to 'read' it to him. During this act, he doesn't learn the way 'normal' kids do. But there is an exchange, a shared experience. He does not process the words, he does not learn the letters. He is there for the moment, and nothing more. That is very cool. He USED to never do that.

This was a book about toilet training. When I got to a page that said 'I stand up to go Pee-Pee. I sit down to go Poo-Poo.' at the end of each of those sentences Bennett said 'Pee-Pee' and 'Poo-Poo'. Now, he's good at mimicking a sound, or repetitive language. I closed the book when I got to the end. I went back to the same page, pointed to the boy standing, and asked Bennett a question.

'Bennett, what is this boy doing?'

Nothing.

'Bennett, what is this boy doing?'

He starts to look away.

'Bennett, what is this boy doing?'

I put the book back in front of him and ask again.

'Bennett, what is this boy doing?'

He points and says 'Doong.'

'He's going Pee-Pee,' I said.

'Pee-Pee.'

'Bennett, what is this boy doing?'

'Doong.'

I said it again, more intensely, more annoyance in my voice, the way an arrogant American speaks to someone who does not understand English, as if repeating it for the SIXTH time, slower and louder, will make any difference at all.

'BENNETT...WHAT...IS...THIS...BOY...DOING?'

I hate the fact that I let this kind of thing really get to me at that moment. I hate the way I sounded. I hate writing about it. But it happened and I want to talk about it. It has consumed my entire weekend. I have felt like shit this entire time, all because of one lousy sentence. I just couldn't understand how a boy, nearly four, couldn't understand something so simple. And then I felt waves of guilt, because I realized that I was fucking up a moment that I should have been treasuring, moments that I know other Fathers would trade anything for to be able to experience ANYTHING like that with their loved ones.

Bennett was frustrated, because I pushed too far and it is was no longer fun, so he scurried off to go be anywhere but near me.

I went to the basement, feeling ashamed, and had a good cry. It had been almost a month, so what the Hell? What a jerky, stupid thing to do. And the thing is? Not the first, not the last.


Perspective. Gotta have it so I don't lose out on moments like that. I have to remember that there is a balance between loving my son for who he is while at the same time doing what I can to explore every option of treatment for him so that he can grow beyond any of his current limitations.

If that's even possible.

I'm his parent, and I just want what is best for him, and what makes this so difficult is not knowing what that is. But I know what isn't...and that is failing to understand that in situations like those my first role is being his Dad, my second role is being his Father.

OUT.

11 comments:

  1. Jonathan Harris, the actor who played Dr. Smith, was definitely not gay. He was a nice Jewish boy from the Bronx who married, had kids, and died at the age of 88, still married to the same woman!

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  2. I stand corrected. I definitely need to brush up on my Harris it seems. That character was so...flowery, I guess I never separated the Smith from the Harris.

    Chalk that up to TWO lessons learned this weekend. Both of equal value. Thanks for the info, my friend!

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  3. And he was from the BRONX? I never knew THAT, either.

    I don't have to turn in my Sci-Fi card or anything do I? Can I get a 'Bad Weekend Spent in Agonizing Pain and Anguish Over Potential Kid Future Get Out Of Jail Free' Pass on this one? :)

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  4. He was! He apparently worked hard to get rid of the accent when he realized he wanted to be an actor instead of a pharmacist. (Although he had a degree in pharmacology, I think.)

    Should *I* be embarrassed that this trivia clogs my brain? I have no idea where my car keys are, but my Dr. Smith trivia is still there!

    And yes, you definitely have earned your "Bad Weekend Spent in Agonizing Pain and Anguish Over Potential Kid Future Get Out Of Jail Free' Pass." Two, I think.

    My brother, who had his tonsils out twice because they "grew back" had dried blood on his lips when my mother brought him home. I was furious because it looked (to me, anyway) like he'd been eating Oreos. :-)

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  5. Grew back!?! That has got to be the scariest thing I have ever heard about.

    Well...maybe not the scariest, but it is definitely up there.

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  6. I'm so sorry about all of it.

    I do have one (maybe helpful, maybe not) comment. Super T almost never will answer a question, even when he knows the answer perfectly well. It is as if he doesn't get the concept of the question, not that he doesn't know what a giraffe is (the particular question that he refused to answer tonight). Somehow it is kind of encouraging to me to discover what he does know, even in spite of not answering the questions (one reason I am excited about the iPad). Anyway, I just wanted to let you know that I certainly have experienced being driven up a wall by the non answering (or incorrect answering). Very frustrating. I have a good friend who has a son who has a very rare disorder, but is relatively high functioning (can walk, talk, read, probably lots of people don't even know he has a disability, etc.) and even he can't answer questions properly. When he is asked what something is he'll answer with how many or when asked when he'll answer who. I think questions are just plain difficult.

    Hope you feel better soon!

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  7. Thanks J...it is a very baffling thing. I don't know if he knows. Maybe he does, maybe he doesn't. I do get concerned about being unable to put two words together to form any sentence at all.

    I dunno...I guess right now my MAIN concern is just to stay focused on maintaining hope that there is no tumor regrowth. THEN worry about making any therapy adjustments.

    One step at a time... :)

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  8. Since we're confessing...

    I may or may not yell at Trevy at least once daily. In fact I may have yelled that very same line at him! My patience is spread thing and I go from zero to yellin' in a few seconds flat. Frustrated over his inability to do simple things. He can't pull his own pants up but somehow he figured out how to stick his foot in the bowl and swish?! Frustrated at his lack of focus. Frustrated when he wallops his brother or sister for NO reason. Or whatever he's doing that day that reminds me - my son is different. And while different can be beautiful...it's also more work than I ever imagined. And the work is emotionally exhausting...physically grueling...heart breaking. There are moments of joy too. You know that. We all know that. But I don't think it helps any one to down play the other side of the coin. It diminishes not just their success...but ours too.

    Not stop making me think about all this junk and let me enjoy my 20 minutes of peace before the kiddos wake up!

    xo

    ...d

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  9. Hi Ken. Good luck with the surgery Friday. From my friends experiences, I can say it is harder on an adult. Expect a bit of pain. I was thinking it must be Bennetts anniversary. As we drove back from the outer banks and passed Cleveland, I remember that Bennett was there the last time we went there two years ago and I had to exercise severe restraint to stop myself from driving to the Cleveland Clinic and imposing myself on a complete stranger just cause I was following his case online.

    As to the parroting, remember that it is an important developmental stage. Just keep talking. It gives him a chance to practice saying words even if they have no meaning. The meaning will come. This practice will help him be understood when he gets to the stage of communicating with words. Just keep exposing him to a language rich environment and let him parrot all he wants. As to what therapy to do, the great Nancy Kaufman advised us that Emma needs OT more than speech. She said Emma is being held back by her focus and if we work on that, everything else will fall into place. I have discovered that not all OTs are equal. So now we go for one hour to an OT our insurance covers who works on focus and fine motor and another we private pay at a reduced rate who works on focus and sensory. Both are great but the second one, who I found at mass oddly enough, is an absolute expert and really works the sensory side. She is doing therapeutic listening with Emma in the session and she is up to seven songs wearing headphones. It's shocking since Emma won't even wear a hat or a hairband. She also gets OT in school but it's not up to the same level. Dunno if you saw the video on Facebook of Emma putting the cap on a bottle but it's astounding to see her focus when she wants to.

    As to why you see bad behaviors at the moment, it may be a childhood phenomenon called summertime that normally improves on the first day of school.

    Sorry for the novel. Every so often, I think I probably should blog instead of writing novels in other people's blog comments.

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  10. I was griping at my own daughter the other day and she looked at me and said, "What did you do with my Daddy? Daddy doesn't usually freak out about that."

    Probably will go down as one of the best moments in our relationship. We laughed and laughed and laughed.

    I thought of that because I wanted to remind you somehow that you will have another chance with the moments. You may have to create them a few times, but you will certainly remember to hold your tongue and not "freak out."

    Hey, I did think of an possible way to understand what might be going on in his brain...

    I'll bet you are aware of the "split-brain" operation where they cut the corpus callosum which results in the right brain not knowing what the left brain is doing. That is a great analogy for the fact that, even if one brain area is working well, it is possible that the areas that lead to or access that area are not.

    Bennett can mimic (and learn)...but he's not so great at answering questions. Sounds like it's as if when you put a question mark at the end of a statement to him, it registers somewhere else in his brain (I wonder if sometimes he feels "performance anxiety" and the nerves get in the way of the info?)
    It is true that our language comprehension area (in the parietal lobe) is different than our language production area (in the frontal lobe) (both left side). Is he better with sign language? (If you point and say nothing, might he do any better...or if you point and say pee pee, and then point and say nothing would he say pee pee?)

    Later...

    (Do we really have to stand up when we go pee pee?)

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  11. Communication or lack thereof, is so hard at times with Scooter, too. She's 100% nonverbal. She had learned a handful of words or phrases over the years and lost them somewhere along the way. A couple of years ago, we took her into a neurologist, who ordered an MRI. She apparently has brain damage as a result of a lack of oxygen on top of the issues that are a result of the genetic disorder she and her sister, Hopper, have. It can be disheartening, but hang in there. Hopefully, Bennett will benefit from some sort of augmentative communication device. My heart hurts for what you're going through. It brings back much of the hurt we have experienced over the years with the girls. {{{hugs}}}

    As far as the tonsils go...I had mine out when I was 36. I had a little extra surgery done at the time, because I had sleep apnea, but I can't tell you how much better I felt! Recovery from the surgery didn't feel any worse than a bad case of strep throat, so I ended up not even taking pain medicine after I kept getting sick to my stomach from the ones I was taking. Don't worry about it too much. You'll recover quickly, and you'll be so glad you had it done! And yeah...mine are starting to grow back a little, but it's taken 10 years, and I've only had one little problem in all those years. I'd do it again in a heartbeat!

    Praying for a speedy recovery!

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