Posts tagged as:

Fear

Trying to Get Perspective

by Tim on November 29, 2009

These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.

I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.

It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)

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Who’s Gonna Ride Your Wild Horses?

by Tim on September 29, 2009

For a long time, I’ve been excited about trying hippotherapy with the J-Man, particularly since the horse farm field trip that originally got my hopes up was canceled due to weather last spring. After many months of waiting, our class was going again! Just our luck, it rained the morning of our field trip, which brought forth a long string of flowery language from me as I watched the weather report. But when the teacher told us at school that this farm has a covered riding area, I was all like, It’s on!

I was born in Kentucky, where you grow up at least in the vicinity of horses regardless of where you live or what you do. I’ve been on a horse like once, but I’ve found just being around horses to be calming. Not something I can easily explain. But with all the wonderful experiences I’ve read about or heard people having with therapeutic horseback riding, I have been looking forward to seeing how the J-Man would feel about it.

I confess that a lot of what I brought to this field trip was my own desire to find something the J-Man really loves, which brings with it a certain amount of selfish emotional baggage. I couldn’t help but have in my mind how I wanted his first adventure on a horse to go. It’s really not fair to him to hope for some revelatory experience every time we go do something new together, but I think it’s a natural part of our psyches as parents to feel like that. In a life filled with challenges, we want to help them discover what they love most and then go for it.

I’d call our first horse adventure a pretty good one – not revelatory – and one that we plan to do again. The farm has a good and caring vibe to it, and you can’t help but appreciate what all they do for special needs kids. They have a free event one Saturday a month where families with special needs kids – and siblings too – can come and ride horses and enjoy the farm. The horses almost seem to exude calm from every muscle, or at least that’s what it felt like to me.

The covered riding area was perfect for the rainy, gloomy day outside. Each of the kids took turns riding the horses – with varying degrees of excitement about it. I took the J-Man over to look at the horse he’d be riding (a beautiful, brown and black horse named Max) so he could get used to him while still in my arms. He was noticeably calm while we did this, even petting the horse – with a little nudging from me – without any noise or complaint or any real hesitation. His touch on the horse was slow, caring, and gentle. I would have given anything to know what he was feeling as he did that.

Max is not a very tall horse, which came in very handy. I didn’t measure him, but I’d guess maybe 5 feet and a bit. We chose him both for his calm and his smaller stature because we knew we’d be walking alongside the horse and holding the J-Man up there. He wouldn’t have anything to do with the helmet, so we just flanked him with arms and people.

When it came his turn to get on, he fought it some and protested, but I’ve certainly seen him fight things a whole lot more than that. The first lap around was primarily us trying to reassure him, help him calm down, and for us to not get stepped on by the horse. Just to throw in some humor of his own, Max deftly avoided a pile of manure by changing lanes and nearly pulling me into said pile while I was trying to sing the ‘Calm Down Song’ to the J-Man. (Thanks, Max.)

The second lap was a much different story. We felt his body begin to relax later in that first lap. All the good sensory gifts that horses can give were working their magic. On the second time around, the protests stopped, his face became thoughtful and serene, his back started to ease down into the saddle, and he held on to the pommel of the saddle instead of my arm. One by one, I could feel his little muscles unwind. Meanwhile, my heart was about to jump out of my chest with happiness.

You could tell he was ready to get off by the end of his two times around, and I took him down and gave him the biggest hug I could. And all the parents cheered for him because they know new and unknown things are so hard for him.

We tempted fate again by putting him on Max one more time a few minutes later. I think we didn’t allow the J-Man the necessary decompression time after a big sensory event as he was pretty upset the whole lap around. (We just did one lap this second time.) In hindsight, that was a lot to ask him to do in that time span, but there’s no way to know unless you try.

But, he did it. He stayed on the horse. He began to overcome those fears. He tried something very new and different. Getting on an animal that’s many, many times bigger than you – calm or not – is something I know a lot of neurotypical kids and parents would be too frightened to do themselves. And for that one lap around, he found something that right now only he really knows. But whatever it was, it was clear enough to us to know that we need to return and give it another go.

We plan to go again next month when they have their special Saturday event. Usually with him, the first time of anything stressful is always very difficult, but each successive time gets better. Given the meltdowns we can get just from moving his car seat to a different car, the fact that he didn’t have anywhere near that kind of reaction to the horse I think means something. What it means, though, only time and experience will tell.

For those of us whose kids can’t easily communicate what they love and what they don’t like, how they feel in new situations, or how they experience an event like this, this is largely what we have to do. We look for experiences that are geared to be affirming to our children and their needs, we go give it a try, and we see what happens.

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The Subject We Avoid Talking About – The Physical Toll of Parenting

by Tim on September 13, 2009

I wish I had some brief, non-whiny-ass way of talking about this, but it’s just going to be what it is. This is a subject many of us avoid because we don’t want others to think we’re weak or talking negatively about our life as parents. But tonight I feel like being honest about it.

Someone once gave me the most appropriate term that I think exists for how I’ve felt the last few days.

I am bone-weary.

It’s a good thing I recently read an absolutely brilliant blog post by Rachel Coleman (aka Rachel of Signing Time!, also aka J-Man’s Secret Crush) called Strong Enough to be Your Mom. I highly recommend you go and read her moving story.

The day after the J-Man’s annual pediatrician’s visit about two weeks ago – where I had to carry him around for an hour and do some awkward holds during the exam – I started to feel a building pain in my low back. And it just got worse and worse. Within hours of when it started, it got to where I couldn’t bend more than a few degrees from vertical in any direction. I couldn’t sit and I certainly couldn’t sleep. I took some ‘real’ pain pills (which I only do when it’s really, really bad), and I might as well have been eating candy.

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Recognizing Your Own

by Mary on September 4, 2009

Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!)

While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke away from his parents several times and ran, not looking where he was going, just running in a desperate attempt to not have to come into the office. At one point he tripped (the sidewalk turned sharply and he didn’t) and went head-first into holly bushes. Holly bushes. So then he was scratched and bleeding. The parents were doing their level best to get him inside.

Tim and I looked at each other and nodded. Boy with autism. We can pick each other out now.

We learned that the parents had given him a massive dose of Ativan to try to calm him, because he HAD TO come in and get a tetanus shot. He needed that shot. The Ativan didn’t work. (As we were waiting to get flu shots while we were there, we heard a loud cheer for him, because they had gotten him inside, and he had received the shot… so they did finally get him calmed enough.) The nurse didn’t seem surprised that we knew the child had autism – she said it was pretty common for parents of children with autism to be aware of others.

There were parents there in the waiting room judging that boy’s parents. I could feel them and hear whispers (not what they were saying, just the whispering voices). And I knew they had NO IDEA what those parents’ lives were like.

And I could only watch, wondering if we were going to be those parents one day. Right now, the J-man is small enough that we can overpower him (see also: holding him down for shots, and holding him in our arms before and afterward), but there will come a day when that can’t happen.

I don’t have a nice way to tie up this post. There’s no “all’s well that ends well.”

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Adrift in Some Parallel Version of July

by Tim on July 18, 2009

I usually start writing posts with some idea in mind about what I want to say. Right now, I don’t. Regular readers have probably noticed that our posting frequency has been way down lately. A significant part of that comes from the J-Man being on break from school and us trying to figure out caring for both him and Not-So-Little-Anymore E – or more accurately, how to get through most days with everyone still relatively in one piece before we fall into bed.

We’re over halfway through the break, and much of the rest of it will be busy enough with family and other things to keep the days moving along with various people around to help us. It really has felt like we’re completely adrift within this month called July, almost like we’re in our own month with its own unique name that exists on no calendar other than our own. Autism has a tendency anyway of upending any sort of standard measurement of time – sometimes more beautifully than others – but lately it’s felt like living in a parallel universe.

The J-Man has seemed to be struggling a lot lately. His attentiveness to activities feels like it’s declined to near zero unless it’s something he can zone out on. His verbal communication seems more limited and frequently patchy, and his moods have tended toward abnormally quiet and clingy. The last couple of days, his appetite has been way off. This has all been unsettling. I know he’s way off schedule with baby and general life chaos and no school to go to for routine and grounding; that just doesn’t help me feel better about it. The part that hurts most for me right now is that I don’t have a clue about how to fix it.

The J-Man is actually heading to the beach for a few days with Mary’s parents starting tomorrow. (Not-So-Little E will be staying here with us.) They’ll be meeting up with one set of aunt/uncle/cousins for the first half of the week. We’ll be going down there about mid-week to visit with everybody for a couple of days. While to most normal parents, this would seem like a welcome respite, I have never found the prospects of being away from the J-Man for long much other than very stressful.

The J-Man is nearly 4 years old, and I think I could count the total number of nights we’ve been away from him on both hands with fingers to spare. We do pretty much everything together. When you’ve spent almost his entire life taking him to countless assorted therapies, working with him every day, watching him carefully in any open space you’re ever in, trying to read every noise or sign or gesture that indicates how he’s feeling or what he wants, and planning out everything in every detail (remember, the right shoe goes on first!) to avoid peril or disaster or better yet to make the day go well, turning all of these off for a few days is rather like telling your body to stop breathing until further notice.

I know rationally that the state in which I find myself in these situations isn’t a particularly emotionally healthy one. Mary and I both need time and distance like everyone else does to feel something resembling normal. We all need breaks from each other, and we need to be adults occasionally independent of everything else rather than 24/7, full-tilt parents. And in order to grow into an individual, he needs to separate from us sometimes and stick his toes out in the world. I know all these things rationally. That does not make it any easier.

One thing I know informs much of my writing is perspective and the ability to find some on a regular basis. For the last several weeks, I feel like I’ve lost that – and on many days, entirely. Everything feels reactive and instinctual. I barely remember what just happened a minute ago and have no idea what I’ll be doing 5 minutes from now during much of the day. Instead of pulling back at night when the kids are in bed, I just want to zone out or do something that lets me distract myself until I go to sleep. As I write this, I realize this is not a very good – let alone sustainable – way to live.

And I’m even adrift trying to figure out how to end this post. :-) I guess all you can say is that this is what it is. I know it’s “perfectly normal to feel this way” and “not to beat myself up over it” (like pulling the string on the back of a talking Sid the Psychotherapist doll), but those sorts of things aren’t really what reassure me. We’ve gotten through a whole lot of challenges so far, and we will again, even if it doesn’t always feel that way in the moment. That’s the constant in this house that I draw endless comfort from.

Maybe he’ll learn some things about how to be away from us and we’ll learn some important lessons too. I should probably start with actually going to bed at a normal hour… starting now.

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When the Only Thing Routine is the Lack of Routine

by Tim on June 2, 2009

It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore. :-)

We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit more sleep at night, and sometimes even in our own bed too. The nursing/recliner sleeping thing has certainly been rough on Mary. I think we’d both forgotten how much the sleep depravation babies bring with them can turn even the best of us into drooling, narcoleptic idiots.

The J-Man is struggling more than before in his adjustment to everything. Weekdays when he’s at school much of the day, he does fairly well overall. We haven’t seen any major, ongoing issues at school, which we think has been a real achievement for him. He certainly has been ‘off’, with his teacher and OT noticing what we have been at home – he’s hard to calm down and get to focus and generally keep still in one place for any length of time. It’s clear the lack of structure in our chaotic house right now is really causing him some stress.

A couple of hours after he gets home from school, he gets more and more into his “running rebel yell” mode, where he runs aimlessly around the downstairs hollering. He’s not upset or angry or anything – as a matter of fact, he’s generally smiling and even laughing while he’s doing it – but it’s like he’s turned into pure, nearly uncontrollable, kinetic energy. Eventually he can get so overloaded that he starts coming unraveled. This has been really bad over the weekends where he doesn’t get the structure of school and losing him to his frenetic running and hollering is almost a given.

We’re been doing some serious therapeutic brushing and joint compressions lately [a real basic overview here - just don't go doing it on your own without a trained OT], which do help, but when he’s heading toward full freak-out, the calming effects of them last little more than a few minutes. Even staying ahead of the freak-out, the brushing and compressions only seem to partially forestall the inevitable. Right now, we can’t really have much structure around the house, so it’s clear we need some more serious sensory intervention.

The OT at school is starting him on an experiment with a weighted vest. [a decent overview here] We tried this about a year ago. He was kinda young for it then, and even the little bit of extra weight threw his then more fragile gross motor skills and balance off so much that he couldn’t even walk in a straight line. Reports from Day 1 of this latest experiment with it was mixed and inconclusive, but it takes a few days to discern much about whether it’s helping or not.

On the personal side of things, to be honest, I’ve been having a very rough time of things the last several days. Prolonged lack of decent sleep is usually a one-way ticket to a bad place for me regardless of anything else. Most days, I’m a walking, finely-tuned chemistry set. With our daily – particularly nighttime – schedules being what they are right now and all the new and exciting and stressful and sometimes confusing changes in our lives, I haven’t found a way to rebalance that equation.

Physically, my body is feeling a lot older the past couple of weeks, too, to the point where it’s often hard to bend over to do much and even walking anything more than a couple of lengths of the house feels like running a couple of miles. I’ve seen more of my chiropractor than usual, and I’m going for more therapeutic work tomorrow to see whether she can get my back and knee to move. Even simple things like bending over to change a diaper or walking the baby around are getting harder.

Trying to coax a non-sleeping baby through the night and a stressed, unfocused, whirling dervish of an autistic toddler – along with his crying brother – through the day has some weekends felt like a bridge too far for me. I think it’s the need to divide time between them that’s been the hardest for me. I haven’t reached any sort of peace with that yet. I know it’ll come someday. Right now, it’s just hard.

I had forgotten how tiring and emotionally and physically challenging these first weeks with a new baby can be, even without all the other stuff in our lives. I just hope we soon get to the point where we get just enough sleep to restore just enough brain cells to really enjoy and appreciate how good things really are. It’s hard to keep perspective when your main objective is simply to make sure everyone is wearing the correct clothes and you don’t drool on yourself in public… at least not much.

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Looking Out Beyond Our Horizon

April 13, 2009

With all the making-way-for-baby chaos around here, posts will continue to be sparser than usual. I may be doing a fair amount of “Here’s an interesting thing I read” type posts for a while until he arrives and things settle to whatever the new ‘normal’ equilibrium will be around here.
An old friend of mine whom [...]

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Worry and scaredness

April 9, 2009

We had interesting news at the doctor’s appointment this week. We had a “size ultrasound” because I am measuring 2-3 weeks ahead. When they did the ultrasound, they verified that yes, the Bean is already measuring at 39w1d and 7lb9oz – when I was in actuality at 36w2d. So yeah, big baby. That’s OK – [...]

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