Thursday, July 3, 2014

The Puke Whisperer


I can't speak for anybody else, but I assume it is like this for a lot of you. I'm going to assume that in the world of typical parenting it is rare that things go according to script with your kids. Taking it a step further, I'm going to suggest that Special Needs parenting ratchets it up a notch and the odds of things going to plan become far less likely.

Bennett is currently having a week-long break from a Summer Camp. Though 'Summer Camp' isn't what I would call it. Technically it is Summer, but it is hardly CAMP. It is a recreational program at Step By Step Academy, the school for kids with disabilities, mainly Autism, where he spent most of the years between 2-5, before we moved him into public school for the first year of Kindergarten.

FYI...upcoming post alert, we have to make a decision in the next couple of weeks about returning him to the public school or returning him to SBSA. I'll let you know what we decide. We have a meeting scheduled next week.


Unless that changes. Plans often do around here. Like this week for example. I want to give you an example of what The Plan was, and then give you an example of what The Reality turned out to be.

The Plan
Bennett's mid-summer break was this week, like I said. So his Aunt usually watches him for these kinds of things, and typically gets paid (if you can call it that) by the county since she went through the process of becoming an official Respite Provider. This fiscal year the budget already ran out so this time it was all voluntary on her part, very nice of her.

Here she is with Bennett, sometime in 2013 during my Year of Silence. That photo was taken shortly after a Special Olympics football game that Bennett received a trophy for 'almost' participating in. I never wrote about it. It was, after all, a Year of Silence, but long story short...he practiced all week but when game time came the band starts up, freaked the shit out of him and he wouldn't go out on the field. The other photos of the event are...kinda heartbreaking. And they spelled his name wrong on the trophy. That...kinda sucked.


A lot of these events are awesome for kids with disabilities. They are. I am not knocking them. For kids with multiple disabilities including severe cognitive and sensory and behavioral types? They just aren't designed for these kids a lot of the time. I get it. Not every peg fits every hole. Sorry for the digression. But that's the Aunt. She is awesome with Bennett. Anyway...

She actually planned to watch BOTH kids, which would give Jen and I time to ourselves, something we just do not get often. We planned to get some stuff done in the house that has been sitting for ages because we can't get at it while the kids are here. And we can't really get at each other while the kids are here, so there is that too. It also meant that I would have some coverage for Bennett daytime so I could get my work hours in during the day as planned.

Everything was set to go.

The Reality
He was off the charts all afternoon on Saturday. I assumed it was from a recent tweaking on one of his medications. He was Hulking Out like crazy. In retrospect, I don't think it was

Jen drove Bennett up to her sister's house on Saturday afternoon/evening. Her sister and family (and Carter who was already up there) were at a cookout, so Jen was chilling at the house awaiting their return. Bennett said 'hiccup' and proceeded to vomit everywhere.


Bennett is not a puker. Never has been, thank God, because he doesn't quite understand stuff like that as it is going down. Guess I should say 'coming up'. He lets it get all over himself, doesn't understand that it is supposed to be done IN something like a bucket or toilet, so he tends to just let it fly. And yeah, there has been an instance or two where he has seen a piece of something that wasn't too undigested that looked like something he would enjoy...and I will let you fill the rest of that sentence in. Severe cognitive disabilities, Hell even mild to moderate ones, suck donkey dick. Does that sum it up enough for you? There was just no way, none, that we felt comfortable leaving him up there with Jen's sister having to manage that and four other boys.
 
It was around 10:30 PM Saturday when she called and told me. He had hurled at around 7-ish I think. Odds favored her coming home with him that night, but her sister and the kids were not back yet and she felt weird splitting without even having seen them. Would advise. 

Midnight. Called again. Bennett threw up again, and she had talked to her sister and they'd kept him away from the other four kids, but because of the late hour decided to bring him back in the morning. Jen was scheduled to work on Sunday (a shift she took figuring it would be no big deal since no one would be here). She has been taking odd extra shifts in order to clear space for me to go to San Diego in a few weeks. She'd have to get up early, hoof it back and hope that Bennett wasn't an upchucking machine on the way home.

On the way back in the morning she called and told me he only threw up one more time, around 3 AM, but after that nothing else, but he still seemed like he didn't feel well. Seemed. See, we can't know how he really feels. 

And that is the real point of this post.

Plans change. But plans change for everybody. I get that. We adapt, we screw with our schedules and we make adjustments to compensate for the shit that comes up in our daily lives. That's...well, that Life. Grandparents stepped up this week and helped out a lot, but this isn't about where Bennett spent his mid-summer break.

What it is about is communication, and the extreme absence of it. And the fact that what is different about This Life, and what I can't stand about it, and what I wish so much I could change about it, is that fact that I can't communicate well with my own son. Not enough to know when he is feeling badly. Not enough to know that this was the cause as to why he was acting out on Saturday.

He was behaving that way because he felt like shit, it had little or nothing to do with the medications. He just couldn't tell me this. No more easily than he can tell me how his day was at school, or after pointing to a book and showing him a cow, and him repeating the word cow very easily, and then going back to the book less than a minute later, pointing to the cow and saying 'What's this?', he can't answer me.


Here, in this house, he is so far removed from the rest of us...there is Jen, Carter and me...and then there is Bennett, off on his own island, and it feels like he is trapped there, because the communication barrier keeps getting wider and wider as he gets older. I wasn't able to be a Puke Whisperer, wasn't able to read any signs that he was feeling sick to his stomach...but who COULD? Who can with a typical child, unless they TELL YOU THEY FEEL LIKE SHIT???

What happens when something REALLY bad happens to him, worse than a stomach bug? What about emotions and thought processes far more complicated than those that make you want to upchuck? What if something were done TO him, something far worse, when he is outside of our own care circle? How would I have any idea at all? Communication is vital, to everything, and we are so far from being able to communicate fundamentally. (Isn't it ironic that 'fundamental' has the word 'mental' in it?) Yes, we've come a long way from nothing, but the truth is, that there are times I think that we haven't come very far at all.

The difficulty this barrier presents to us is far, far greater than I can express here. But that? That is the true Reality. I would gladly have both my legs cut off if it would give him more of a voice. More than that even. It is likely that I'd give up my existence on this Earth. But the World doesn't work that way, sadly. I can only do what I do, and that is keep trying to hear him any way that I can.

'Hiccup' just took on a whole new meaning for me, I can tell you that.

OUT.

11 comments:

  1. Well, you know I hear you barking big dog. And I won't offer any advice or pat cheerful reminders. It sucks all around to "never know shit." You do the best you can do. You remind yourself that you're there to help, to guide -- perhaps not ever, to fix. You tell yourself that we're all on our own journeys, even our kids with cognitive disabilities.

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    1. I'm totally not. Except for the "big dog" part. That's what my sisters and I call each other when we have complaints.

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  2. This is wrenching on many levels. Clear, detailed communication is what I too have most wished for,
    for my daughter.

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    1. Sorry to hear that. I hope you get it.

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  3. It is scary to have kids that don't know and can't communicate who or what they feel. My daughter is 22 now and I often wonder what goes through her head. I pray she never gets seriously ill.

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    1. 22 years is a long time. How far have you come? Do you have any language between you at all? I often complain about my level of communication with Bennett, but at least we have SOME communication. It's basic, it's crude, but I know more than a few people who would say to me 'I'll take that.'

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    2. I taught my daughter sign language and she has the rudiments. She can communicate like a two year old, only concrete stuff, nothing abstract. She can't name feelings or how her body feels, at least I haven't seen that. Her body language speaks volumes though.

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  4. Hey I just noticed the new header! I guess you are a sherlock fan as well :)

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    1. One of the best shows on television. It's only flaw is that there aren't enough OF them. I can't stand the three-episode format. But what can you do? This third series was very offbeat. Sort of a light comedy set of episodes, a very quirky way to showcase his character. At first I was a bit unsettled with it, but I eventually was fine with it. At the end of it, I was VERY pissed off that they were going to end it the same way they ended the second series and then they threw that twist in there that made the whole thing worth it. I fucking love Steven Moffat...for what he did for Doctor Who (though I am going to seriously miss Matt Smith) and what he does for this show.

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  5. It is a great show. My wife, however, isn't really a fan so that sucks. Still looking for some other good shows to watch. Recorded "The Strain" but haven't watched it yet. Waiting for "The Walking Dead" to start again.... :)

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