Friday, July 16, 2010

T.G.I.F.F.


You figure out what the extra 'F' means in the title.

Been a rough week.

I'm baffled by Bennett's current behavior pattern. When he is at school, he is engaged in his activities and not unhappy, making some progress, albeit very small steps...you know, 'Inchstones'. He doesn't get upset very often and all the reports we are getting from there indicate he is doing well emotionally during the day.

But at night, when he is home, he goes through periods of extreme duress. Since he cannot communicate with us I do not know why, and while we often try to postulate the reasons, we can never be sure.


If it wasn't such an awful sound/experience of his walking around and screeching, it might almost be funny when Jennifer and I start trying to figure it out.

Did he poop today?

I don't know. It isn't written on the sheet.

He might be constipated.

Maytbe. Did he get his afternoon medicine?

I don't know. Lemme see if his back tooth is all the way in.

It CAN'T be teething, I mean...all of them are in now, aren't they?

How long was his nap today? Maybe he's just tired.

Maybe he just wants to be held.

How much did he have for dinner?


Etc., etc., etc.

And all of this while trying to distract him with snuggling, food, engaging toys and the like, and none of them work for long. They'll calm him for a few minutes, but then he will start screeching and wriggling to get away, or spit the food out, or throw it, or throw a toy. He'll then lay on the floor, and bang his head and arms a few times.

And if you try to lay him in the bed and snuggle with him in the bed because you think he might be tired? Any neighbor hearing the sounds that come out of this boy would think we were murdering him. It's that intense. He will scream, stiffen and do anything...ANYTHING, to get off the bed and away from the person who tried to take him there.


So last night, his grandmother took him overnight. She offered because she thought we needed a break. I agreed to it because I wanted to have him go there as more of an experiment. And lo and behold...he was fine. He had one screech/tantrum during his bath, but other than that not a thing.

NOW what do we think? Not sure. Could it be us? How weird would that be? We'll see what happens tonight, after school. He might be totally cool, he might not, we simply don't know. It is causing us major stress though, I can tell you that.

We do the whole ball of wax the first week or so of August at Cleveland Clinic. Neuro-Psych, Neuro-Oncology, MRI, EEG, Epileptologist, 1-year Surgical Follow-up, and on and on. We'll certainly be seeking any answers we can get, but if past experience is any indicator...there ARE NO ANSWERS. No definitive ones anyway.


There never are.

I don't believe the behavior is seizure related, I don't believe the behavior is because of something going on electrically in his head. I believe that the answer is simple...he can't talk and he wants to. He wants something and he can't tell us. Sad thing is he understands a LOT of words. You can see by his reactions to words.

Earlier this week I overheard Jen saying something about the possibility of him never really being able to talk, about his development possibly never really progressing beyond a certain young age point, about Bennett never really being able to have the kind of life we always hoped he'd be able to have if we stopped the seizures and the tumor never returned, both of which happened.

A Pyrrhic victory, to say the least. And yes...I do understand things could be worse.

So that's that.


On Carter's birthday, I had to leave the festivities and take Bennett home early because he was freakin' out. This week I had meant to post some pics of the party and even (hopefully) finish my essay on Why Things Suck, but haven't had the gumption yet, or much time. Or the words, frankly.

Last night, rather than catch up on stuff like that, we took advantage of the Non-Bennett environment to spend the evening just focusing on Carter. Even though there are some things in the movie that are WAY too age-inappropriate for a 6 year old, we watched Ace Ventura: When Nature Calls. I needed a good laugh and for some reason I always laugh at Jim Carrey in the early days. Always.


He enjoyed it too, since the Ace character acts so silly. We had fun. It was pretty quiet otherwise. But I do have to admit...having Bennett not be there was weird, even though when he is here there is stress if he goes into freak mode.

I missed him.

I felt EXTREMELY guilty for not having him here. I felt...I dunno, like I was too weak and too unwound as a Dad and should be there for him no matter what the circumstances and I need to suck it up and plow forward.

Beating myself up. Oh, how I excel at that.

More of the other stuff later.

OUT.


10 comments:

  1. I know our boys have very different circumstances, BUT, we too deal with the frustration of not knowing what is wrong with H when he has unconsoable crying jaggs.
    My husband can't cope with hearing him cry for sometimes hours, knowing nothing helps or stops it.
    For me, it kills me and gets under my skin all at the same time, yet I feel guilty leaving him alone (in another room, which is husbands solution because he doesn't think the whole family should have to suffer) so I end up alone with the door closed trying to soothe whatever is bugging him.
    I try and tune it out and watch the tube over the crying, but I refuse to leave him all alone to cope. Puts a little stress between me and my husband as well...we just view/handle this differently.

    My point?

    Eventually we all need a break, big or small, just to re-group, just to be able to handle it the next time it happens.

    So let go of the guilt, if you can, and realize you may be able to handle it a little better next time. TAKE A GUILT-LESS BREAK...it's o.k.!

    Good luck tonight....

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  2. Just brainstorming, but could it be something at home like the carpet or the lighting or pets ect that is different from school or grandmas? Maybe there is something at home that irritates him?

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  3. OMG Can I tell you the scream fests that madie has! For reasons unknown! We ask the same questions..poop? teeth? gas? bored? ohhhh man!! I feel like I should be able to figure out what is wrong..I mean I am home with her all day! nope. I put her in her bed and she calms down..happy as a clam. I wonder..Bi-Polar child?? LOL
    I try my darndest to get away maybe even a night at the beach house an hour away with my inlaws away from madie and feel guilty that she is not with me..too stubborn to leave "my ways" up to my husband..knowing well that she would be a nightmare in the hot sun and no AC house.. *sigh* But also wishing I could take her to the beach..and do what? Scream on her blanket in the sun? Well sometimes she MAY not...and I hope each time she will be fine.
    These things may never be solved.
    Hang in there. is all I can say :)
    Ohhh The Joys.

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  4. You deserve the time with Carter, and Carter deserves time one-on-one with his parents, regardless of whether there are other issues involved. And Bennett deserves some time one-on-one with his grandmother, and it's lovely that he got that special time too. That's really cool. All kids need time out from one another! I used to feel bad about it, but if we parents aren't coping then nothing goes well I have discovered the hard way!! This parenting lark is hard work and a total guilt-fest. I vote for doing it more often- you all deserve it and sounds like you all had fun :)

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  5. I am fortunate that (knock on wood) Colby hasn't had issues like this....I know I am blessed....But I have so many friends whose children do...

    I think no matter WHAT the issues, be it seizures, tantrums...whatever...We always beat ourselves up for not being "good enough"....

    Colby can't tell me what is wrong (or right) and never will...I have accepted that as fact....It still sucks, though, after all these years....

    I'll just bet you are right, though...As Bennett's communication skills (whatever form they may be) increase, you will see less and less of his frustrations....

    Take advantage of the offers of sitters....Our kids need their grandparents.....And you need the break....

    :-)
    Cyndi

    Cyndi

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  6. Although our circumstances are different, I can completely relate. KC is GREAT with school, and daycare, and anyone else but my Mom and I. (We live together) He completely melts down when he gets home every single day. He wakes up angry also. KC can communicate, but he is so angry and frusterated that he takes it out on us. He is also on the Autism spectrum and does full day ABA. I think Bennett probably is pissed that he can't talk and he thinks you guys should be able to fix it. He knows you are the people who love him, and help him in any way possible. Somehow, he knows that if anyone can fix it, it will be you. I believe that is why he acts that way for you guys. Plus he is comfortable with you in a way that he can never be at school. I'm not sure what the answer is...we have't figured it out yet either, but I think that is the reason. I certainly do not think it is any kind of failure on your part. Quite the opposite in fact. Bennett trusts you enough to completely let go when he is with you. That is a normal kid thing, although the proportions he takes it to are not normal for obvious reasons. I know it sucks in a major way...I hope things get better.
    Karen

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  8. Honestly? Austin never ever has tantrums. Ever. But, there is still no way in hell I could handle every single day without a break in between somewhere. We all need this from time to time to re-fuel for the next round. That doesn't mean I don't get what you're saying, because I feel guilty for the plain and simple fact that I even needed the break in the first place. That I'm not supermom. But, I'm a different person when I get him back. Charged and a little bit lighter. Hang in there.

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