Saturday, February 25, 2012

Fear, Of Self

There are times when I read another post of one of the Brethren or Sistren (mostly Sistren) on my Blogroll and I start to comment. And I type. And I type some more. And I keep clacking away. And then I sip some tasty beverage. And I continue typing.

Before I know it, the thing takes on the shape of a short novel, and I realize I am in danger of Blogjacking. Not even danger, really, I am actually DOING it, and the only reason it isn't considered Blogjacking by the owner of the blog is because I happen to be in good standing with said owner.

But I made a rule some time ago after going crazy on SingleDad's blog. Actually it's more of a guideline than a rule, that I would try to curtail that shit. SO, when I hit a certain paragraph count, I am supposed to stop, hit CTRL + A, then CTRL + X, then open my own blog, hit New Post and then hit CTRL + V and start writing a blog entry here.

Which is exactly why you see what is here, unfolding before ye.

I was reading the blog of one Mr. Eric Olson, who writes Pressure Support, about his son Liam. Eric and I met through Mission: iPossible, well...before that actually. He and I were both one of the original Marissa's Bunny contest winners on behalf of our kids, and as it turns out, when Heather asked me to be a part of a restoration project that ended up becoming Mission: iPossible, I got to know Eric as his family was one of the remaining families from that original 'Winners List'.

As one of the few Father's, he stood out like a sore Socket Wrench. So we've since hit it off. Even though he is a New England Patriots fan. But for this I can be very forgiving. Besides...Pamela, another from the list of 'The Twenty' on the Recipients from Mission One, is a devout Pittsburgh Steelers fan, and I love her and her son Joseph, too.

So I am reading his most recent post, the one about Good Questions, Bad Questions, and the title is making me consider busting out some old Led Zeppelin on my iPod and listening to it, and I come to a startling realization about my own son.

A realization that is, quite frankly, on the borderline of kind of...dreadful.

I never take Bennett out in public. And I mean N-E-V-E-R.

I avoid it at all costs. I go with him to family functions and stuff. Parks and Recreational type places, where there is a LOT of buffer between him and other people. But to the grocery store and the like? Nope. Toy store? Nope.

I take him to NOTHING.

Holy shit. I had no idea how isolated we've become. We do not go out as a family. WHATSOEVER. Going out to dinner is, simply, out of the question. The likelihood of Bennett acting out, or throwing his food across the restaurant if something goes wrong, while not HIGH, is still high enough to where Jennifer and I both do not risk it.

There is also that chance, that very real chance, of him having some contact with another child and not knowing how to react if the encounter doesn't go quite right. And I do not know what I would or should do in that situation if Bennett were to strike the child or lash out.

It's fear really. Plain and simple.

But am I doing the RIGHT thing? Am I OVERLY concerned? OVERLY paranoid about it? Am I hurting his development? Should he be exposed to the environment anyway, and should I let chips fall where they may?

I read another friends blog in the last couple of days too, and that also got me to thinking about the months ahead. In Heather's post, she was showing an average day in her California neighborhood, with her family hanging outside and everybody sort of doing their own thing, visiting and playing. Zoey was outside too, and being a 'part of it', but she was also NOT a part of it, and Heather had some things she was wrestling with over that.

I wasn't sure what to say there, but only because I could understand the internal struggle and it made me sad as well. Obviously Bennett's challenges are very different than Zoey's, but parental concern over how our kids will handle their own unique set of circumstances are similar across the board, for the most part. And most of the time that's true even of ALL kids who have major life hurdles to overcome and the parents who care for them.

Over the next several weeks, as the weather starts to warm up, we will have something neighborhood related to be concerned about, too.

In our little development, for example, come Spring? We will have to most likely have to keep Bennett contained indoors a lot, while Carter is outside. All because of what I said above. And in addition? Because Bennett, when he is outside? He bolts, sort of like, and I hate this analogy but I have none better, but like a dog that is not well trained.

But what can I do, really? Put a rope on him? How do I keep him close to me? How do I stop him from running out in the street? He has ZERO concept of the idea of what a car even is, let alone the fact that one could crush him. But when he gets out there, the kid just wants to fly.

Then when you try to run after him and grab him to stop him just to try and protect him he starts a major freak out. It becomes almost nightmarish sometimes. If we had a fenced in yard it might be different. Not in this neighborhood. The HOA requires that any fence be...get this...IRON. Yeah...we weren't expecting a Special Needs child when we moved in, NATCH!

Yet another thing to try and figure out I suppose. And like everything else, there is an answer, somewhere, hidden between the layers.

I just wish it were easier to determine which of the answers were the CORRECT ones. When it comes to the decisions we are making regarding Bennett, or even Carter for that matter, it seems like I spend half the time making a choice, and the other half second guessing it.

There really should be some kind of manual for all this shit. Not that we'd actually READ the thing, I know. But anything would help. Hindsight is helpful and everything, but FORESIGHT would be even better, don't you think?



  1. Thanks for the signal boost my friend.

    Let's get one thing out of the way before I try not to blogjack your post... That image, the storm trooper, You could lead each and every blog post with that image and it would continue to make me laugh out loud EVERY TIME!

    Anyway, on to the subject at hand. We do try and get Liam out and about, as much as possible but that's not to say I don't understand your struggle.  We go for walks, we hit the park, (thank God it's been such a mild winter) we visit grandparents, but take restaurants like your example. We've only done that once. And as successful as it was it takes so much work. Liam rolls deep, he comes with equipment, and as such many restaurants have little room between tables to accomodate us, so much so that we never make the effort to call first and ask to reserve a corner table out of the way of everyone.

    Other than that, we have the benefit of a fairly stationary kid. I mean the only way Liam could run out into traffic would be if absent-minded dad forgot to engage the brakes on his chair (don't laugh, it happens) But I do understand your fear of putting others out, in our case the possibility of an emergency trache change or how suctioning would be percieved by strangers trying to eat and so we kind of keep to ourselves. Other than the local coffee shop and ice cream stand it's usually just the three of us walking around town. We still get the stares (Karin and I call it "freaking out the squares" a la The Simpsons episode when Homer becomes a hippie) but those are our oppurtunities to alleviate our own fears about being "those people" as well as spreading the word about kids with special needs in general.

    Aack, see that? I just did what you warned against in your opening.  Sorry about that. I'll shut up now.

  2. Well, we could try and write the manual together, couldn't we?.

    Together. This Sistren and Brethren community you talk about,it is a life line to many of us. If not for advice and wisdom and guidance, then sometimes just a go to place, knowing that others 'get it'. Different journeys, parallel roads that diverge in a common place: abiding love for our children.

    As for the foresight. I think I will pass. Always thought two things about foresight. One, what I might see, might scare the living hell out of me and make it impossible to get through the now moments. And two, I might ruin the magical moments of now. The joy moments we cling to that are scattered amongst the chaos and fear.

    We will find our way. All of us. One way or another.You and I will be lead by Bennett and Zoey. Just as it has always been

  3. I probably always say the same thing to you in some variation, over and over. Consider me your big sister -- a little further along the way, not because of wisdom or smarts, but just literal years and you can take it or leave it.

    Go easy on yourself. You have plenty of time for Bennett to become acclimated to the world. Do it in tiny steps and don't beat yourself up. Guilt is useless. It might suck sometimes and at others it might surprise you. It's all hard and it's always hard, but the brethren and the sistren are always, always here.

  4. We also rarely took our daughter, Christine, places, but not because of safety or behavior-related concerns or other people's reactions to her. Taking a severely disabled kid out just seemed too hard. We thought it was easier for one of us to stay home with her rather than dealing with the hassles of getting her in and out of her wheelchair, negotiating not-quite-accessible entrances, etc while keeping control of our other kids. But that also meant that her mom and I rarely went anywhere together. Now that we are divorced (perhaps in some part because we weren't spending that time together?) and it is just Christine and me, she gets out a lot more - if I go somewhere she does too. She enjoys the outings and honestly, I'm finding it isn't as big a hassle to take her places as I'd imagined. Some things just take a little extra time, effort, and planning. We are able to do a lot more things and go a lot more places than I ever would have guessed before we were in a position where I just had to try.
    So sure, there are places and situations that you can't safely or comfortably handle with your son, but I hope you won't let fears and concerns limit you unnecessarily by keeping your family from activities and locations where you CAN participate. Recognize the limits, but don't imagine them to be more than they really are.
    Anyway, I won't hijack... but I've been lurking around your blog (as well as several other 'special needs' parents' blogs) for a while now and thought it was time to pop up and say something.

  5. Don't know how much this can help since every kid is so different, but I can't take Segev out, literally. His health won't allow it.
    I guess this is my way of saying, find a way to go out because you never know when the day will come and you simply can't. 24/7 inside the house. Think about it.

  6. Honestly, neither of you will ever learn how to handle being in public unless you practice. The keys are having no expectations, choosing activities that are appropriate and simple, and being willing to leave early if necessary. And try not to go anywhere with him alone until it starts getting easier. I mean, I did it with my son, so it's possible, but it isn't preferable.

  7. I struggled with the same thing when Kade first started having seizures. I didn't want to take him anywhere. "What if he had a seizure while we are out", "What if we have to leave in the middle of dinner somewhere". Eventually I realized we had to live our lives, and Kade was as much a part of life as my wife and I.

    Of course we did have the pitty stares and "oh he looks like he is sleeping" or "oh, what CAN he do". My answers were typically short and to the point. I think a "screw you" might have slipped out once too.

    You are an amazing writer. Keep up the good work.

  8. I found your blog via my son's best (translantic) friend's dad's blog (still with me?). Just wanted to say I thought this was such a great post. My son is 16months old and sometimes I feel like we've been doing this forever and the other times feeling like we've just started to dip our toes in and it's still all so new.

    If you and Zoey's Mum do finally write that manuel, please do send a copy my way. xx

  9. This was something that I struggled with initally too. Mainly because I never knew if Will was going to have a breakdown and start screaming, crying, or throwing himself on the floor. And if not that, if he could even sit still for any period of time if required. However, with my husband in the miltiary, we were in a way forced to take Will out. Three deployments and 2 other kids kind of forced me to leave and take Will places. And he did have breakdowns, fits, and generally bad behavior. So many times. So many times that I wanted to never leave the house again. But very slowly over time, it started to get better. Part of it was medication for the ADHD. Part of it was behavior mod, behavior charts, and reward charts for the ASD. Part of it was finding what motivated Will - anything electronic: we never ever leave the home without the leapster explorer. If all else fails, he will happily zone into a game on it. And I think the biggest part of it is pushing his limits by exposing him a little more outside of his comfort zone time after time and buildling up kind of like some type of tollerance. It's interesting, but this has worked for Will in other areas. For example, he has lots of sensitivities, and water is a huge one for him. He would scream if we even put him in the bath. But he couldn't go his entire life without a bath, and it wasn't going to be acceptable for him to scream his entire life while in the bath. As uncomfortable as it was, and as badly as my ears hurt, we gave him a few more minutes of bath time and kept expanding his comfort level. He still doesn't like water in his eyes or on his face, but the other day he actually put a wash cloth over his eyes and submerged his head in the water - and was so excited when he did it, remarking "I did it mom. The water didn't get me." Others are cold temps, warm temps, pepper (even table), tired legs and walking. We just keep pushing him, and it never goes away, but it gets better. In a way I am glad that I was forced to push Will with going out into social public situations where he would be uncomfortable. I don't think I would have readily have done so, for fear of what would have happened. So, now that I hijacked your post, know that there are so many who understand, and that if you do decide to venture out, you might eventually be surprised.


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