Wednesday, September 20, 2017

That's The Way The Story Goes...

Another term for balloon is bad breath holder.
-Demetri Martin

I'd like to thank everybody who took a minute to send me a note yesterday, either through Facebook, Instagram, e-mail, text and the rest. Thanks for thinking of me. To those of you who called, I'm sorry I didn't answer the phone. That happens in this Special Needs Life. This is difficult to explain to those that do not live it, easy to explain to those that do...but I was totally consumed by what was going on with Bennett. It was center stage all night and nothing could change that.

For the most part, the issues that surround my child with Special Needs don't follow a schedule. So the fact that I reached a 50th year milestone birthday? It didn't mean anything. Not really, other than "Hey, I made it...whew." The reality was a Tuesday, and an unusually difficult one, for Bennett. That by extension made it an unusually difficult Tuesday for everybody else.

I think a tooth is coming in and frankly he has never been able to process pain very well. Who does?

That was the foundation. Or I think so. I can't ever say with certainty, because we can't communicate with each other on any complex level. What got the aggression boulder rolling down the mountain was a set of balloons that were here (the 50th helium birthday balloons from the photo above) when he got home from the SN facility he attends for school.

Pure joy. That's what I saw in him for around 6 minutes when he first laid eyes on them. That lad loves balloons. He grabs them and starts running through the house with them, giggling and snorting and having the time of his life. Until one popped on a ceiling fan.

It isn't like the pop of the balloon scared or upset him, or that he gets freaked by loud sounds. This is a boy who loves that kind of shit. He loves fireworks, loves police sirens, the sound of a starting pistol for a track meet. All of it. To fully understand why the popping of the balloon led to him trying (and succeeding) in destroying several other balloons, whilst using the balloon to beat things that belonged to me and himself in the face, you have to go back to his difficulty processing pain.

ANY pain.

That includes the kind of pain when you stub your toe...but it also includes the complex stuff like guilt, shame, loss, loneliness, etc. And that list is endless it seems. I've only just begun, and it has been 8 years now, to understand what a driving force this is for him. And how difficult it is to navigate the mine field of it when we can't communicate with each other.

With that in mind, I make a lot of suppositions. They guide me. As much as guessing can. But my guess last night was that he felt bad about popping my balloon, thought I would be upset though I assured him I was not. Or he was just sad by the loss of the biggest, fattest balloon himself. Either made sense. As it kept escalating, the real issue became less about him and more about me. For the first hour, hour and a half I was handling it all very well. But then I couldn't.

I'm a human being. Though many have accused me of robotic tendencies. All the depression, the anxiety I've had building up about turning 50, where my life is and how much I don't like where it has been for years, blah blah had all been sitting in there. I used very poor judgment, not only yelled at him but after he had destroyed most of the balloons I popped the last two just to get the whole thing over with.

I shouldn't have. Should have thought of something else. Of course it made things much, much worse. By the end, I was a sobbing mess. Then, like we always do, we came to terms. We apologized to each other, I told him I loved him, he said I love you too. Though as much as it feels good to hear I know he has learned to say it as a response phrase to hearing the words "I Love You" being spoken. I'll never know how he FEELS. I can only guess. And hope.

After we made up he had a bath and then fell asleep next to me on the sofa like he does most nights, watching CNN. Not that CNN is the usual fare on TV, it isn't. I went with something 100% boring to him on this night so that he would just have a talking head and nothing that would grab his interest while he got sleepy and I rubbed his back. That was what worked for him last night. Other nights it is something else. Whatever gets it done.

THAT was the 50th birthday. No candles on a cake. No singing songs. No un-wrapping of gifts. No party. Just violence, tears and exhaustion.

Credit where credit is due section: There was an unwrapped present given to me in a kind of quick 'Let's fit this in here' scenario. That's this Life. I'm OK with it. There was a cake type dessert. Because of the behavior spikes we couldn't risk exposing it to Bennett, had to wait until he went to sleep. The other members of the household were unable to wait for him to be fully asleep and upstairs so they munched without me, thought that could have gone down differently. My Mom sent me some cash, very cool.

Important to point out my mood and overall disposition was just bad. Frankly I should have found some hole and crawled into it. Too much negative energy all around. Yet how long has it all been here? A long time. A very long time.

This is the reality of Life with Bennett. On any given day things can turn. You would expect that I would have found some kind of emotional shielding from all of this by now. That I would have more answers...have everything figured out. There are days man...days when I feel as clueless as I did when this all started eight years ago. I hate that about myself. Our lives can and should be different. This truth screams out to me.

I used to hope his aggression would cease. Now? I hope to get to a point where we can get a reduction to where he has a ratio of at least 55/45...meaning a few more good days than difficult days.

There is only one problem with getting too accustomed to re-drawing your line in the sand. You start to have a level of acceptance of a shattered world, and I'm not sure if that's OK. Though it must be since I'm suggesting it right? Besides, after a while all you have left is a bunch of sand and nothing else.

Most people call that a desert.


  1. It's difficult to wrap up all the layers of how this journey is woven into every moment of our lives. You have a gift for it, though. Thank you for openly, honestly sharing your heart.

  2. My son also completely overreacts when he does something wrong, even if by accident. The carrying on and sobbing is almost worse to deal with than the initial behavior. Actually, it is worse for sure. He also intentionally destroys things he likes and then melts down over it. It is mind- boggling. And infuriating sometimes.

    I hope and pray that the aggression lessens for Bennett over time. I have been lucky. I say lucky because we were eventually able to find meds that worked and he just kind of calmed down on his own. I refuse to say it's something magical anyone has done. Lately the worst that's happened is a smack across the face and a thrown iPad. I'm cautiously optimistic about puberty.

    The dessert thing would have sent me over the edge.

    Happy belated.

    1. Thanks.

      Puberty. Yikes.

      Carter is 13 and WOW. His entry into teenagership has been a real battle. I expect Bennett's to be all out war.

  3. Thought you might be amused to know some punk kid is pretending to have revived Palisades...

    1. Yeah, a few people reached out about this. It's so...sad really. That's the first thing that came to mind.

  4. I just discovered your Blog via another Caregiver Blog and I can certainly relate on so many levels, you kept it 100% real and I like that very much. Too many sanitize Caregiving and Extreme Parenting and that bugs me since it's so NOT Real! I am raising two Special Needs Grandkids and Caregiver for a brain damaged disabled Veteran Spouse... so the angry outbursts associated with TBI, Serious Mental Illness and Autism are something I've also lived out daily for a very long time and it is indeed exhausting. And we have loads of "New Normals" as I like to call them, where sometimes things improve and sometimes they go downhill into an abysmal state that could make you Mad as a hatter... or Losing It yourself. Big Virtual Hugs, Happy Birthday... there really are no adequate words of comfort.

    1. D's blog I imagine. Thanks for stopping by and I appreciate your comments.

      I gotta get back to it more. I know I WANT to, but there is a little voice in my head that says 'People don't read blogs anymore.' Then I get cool messages like yours that kick that little voice in its little ba--, um...knees.

      WOOOT. :P

    2. Oh, and your blog is nifty. Wow that's a lot of stuff. I have a similar nature when it comes to purchasing a LOTTA stuff. Moving is always...interesting.

    3. Too funny, yes, we moved 2.5 years ago and I'm STILL unpacking and culling possessions via a rented space at an Antique Mall. I think my things bring me comfort, before all the Caregiving I was a Minimalist believe it or not... now I'm a Maximalist, Yes, it has changed me in mysterious ways! *wINKS*

    4. PS: You should blog more, it's a wonderful community of kindred spirits, but I do understand that small voice that acknowledges Blogging ain't what it used to be. But I just don't feed my Soul with Instagram... ha ha ha.

    5. Oops. My bad for not seeing these and publishing them. I used to not have moderation on, but then all of a sudden I was getting spam every day. It stopped when I turned on the moderation a month ago or so, but I forget to check. DOH. Maybe I should turn it off again.

  5. Sometimes when I read your updates I can't tell where the boy ends and you begin.

    I worry that you are sliding/slid down a slope that makes your caregiving detrimental to both you and B.

    I usually want to be supportive of you, but lately I want to pull you aside as if you were my brother and say, "dude, your not helping him right now, you are no longer parenting him, your just providing crisis care. Step out of the situation. Temporarily place B in respite care and take a real fucking break. Being a parent doesn't mean you have all the answers and endless wells of patience. This isn't a normal parenting job.
    Stop and get new fresh training. You sound like your drowning and its frightening to read. Your not failing him by occasionally, stopping and reassessing your role. Your pacing yourself to keep up with changes and taking necessary breaks to ensure you will be there for the long run."
    But I won't say that cause it would overstep my bounds and I would sound like a real asshole.

    1. Nah, no assholery, it's a valid point.

      I do feel like I'm drowning. One thing I find frustrating here...I need to write, to let stuff out, I'm only expressing say, 1/8th of the picture. It's incomplete. Things hold me back from being what I want to be, which is blogging with no boundary. My writing often feels disjointed, fragmented, because I think it has to be.

      But I do agree a break is in order. I'm taking one. In November I'm going to see my Mom for a few days, alone.

      I've always admired your willingness to shoot from the hip. Respect.

  6. I agree you need a break. God bless you. You have so much weight on your shoulders. You must take care of yourself before you can help others

    1. Was supposed to have a nice fat one in November. Now that’s not going to happen. Truth is within the next year in all likelihood I will have lots of breaks, as my wife and I are discussing options for divorce. The thing holding it back is I’ve been out of my career full time for 12 years. Worked some remotely within that time but my options within my career field locally are super limited. A reboot is imminent but not something that is quick or at the moment something I can afford. It’s daunting to stare all of this in the mouth at 50. I need to sort out my thoughts clearly.


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