Stress

Take a Deep Breath

by Mary on March 29, 2011

A goodly amount of crap has happened in the Flashlight household since the end of last year. A lot of time, I’ve just been paralyzed by the drama. Now that it seems to be (mostly) resolved, I may be able to write coherently about it.

Back when I was in the hospital in November/December, one of the things they told me was that they “caught sight of something in my lung” when they did the scan of my abdomen. “Probably nothing,” they said. “We’ll check it again in four months.” Cue me, worrying. Because we’ve certainly been told “probably nothing” about other issues that have turned out to be Something.

Also, when the IV pole fell on me, it caused a deep muscle bruise on my left shoulder. I’m left-handed, and I carry the kids in my left arm. No strain there. I also managed to catch my foot trying to step over a baby gate, and fell… onto that arm. “Probably a torn rotator cuff. Probably needs physical therapy.”

During the winter break, we finally got notification that we could get some other “out of school” help/therapy for the J-man, because for a while now, home time has been difficult. Number of therapy visits are dependent on my health insurance.

Then, in the beginning of January, my team at TCTSNBN was informed that layoffs were coming. We got 2 weeks to stress about whether we were chosen, and then those who were chosen were told. I was one of the chosen. No stress there, right? I mean, I’m just the primary breadwinner AND the holder of health insurance. Not like I could need either of those things!

TCTSNBN, in their infinite wisdom of this round of layoffs (and this round for my team involved THIRTY PERCENT of our US based employees), gave us 60 days on payroll to find another job within the company – or without the company, but 60 days either way before severance kicked in. The severance package was also pretty good, but GAH – health insurance!

I immediately sent individual emails to everyone I’d ever worked for within the company – or even people I peripherally worked for. I readied my resume over that first weekend, and eventually applied for 48 different jobs within the company. I had some immediate rejections (always good when a script tells you “Not Qualified”) but also a good number of “Resume Forwarded to Hiring Manager” replies. One of those jobs was one I probably wouldn’t have applied for because I didn’t really meet the written qualifications, but one of my contacts had sent my resume to the hiring manager, who asked me to apply.

There followed a round of interviews – many of which stopped after the first question of “Why do you want to relocate to random-very-cold-Midwest-city?” – and an interview with the hiring manager who had asked me to apply. THAT one went very well, and at times I felt like I was interviewing the manager instead of the other way around. I felt pretty confident, but it was OVER A MONTH after that interview before I got an official offer letter… and only 6 days before I would have gone off-payroll. Whew!

I started physical therapy 2 weeks ago, because my shoulder had gotten so bad that I couldn’t take a deep breath without wincing. The J-man’s getting 12 hours a week of developmental therapy, at our home, and the lady is awesome with a side of awesomesauce. I had my 4-month follow-up CT scan, and the place in my lung is actually getting smaller.

Included in the results was the comment that the bilateral atelectasis (essentially, it means I couldn’t take a deep breath, probably from the pain) noted before was now resolved.

Resolved indeed. Deep breath in. Deep breath out.

{ 5 comments }

Two Be or Not Two Be?

by Tim on March 13, 2011

[This is a post written in two different eras of our lives. It's about the question we wrestled with for so long regarding whether to have a second child, which I thought of as "Two Be or Not Two Be?" The first part contains some thoughts I wrote in 2009 about three weeks before Dale Jr. was born. The second is reflections of where we are now.]


April 17, 2009

One of the most complicated and difficult decisions Mary and I have made together is whether and when to have a second child after our J-Man. We knew from before we got married that we wanted two kids. We understand ourselves well and accepted that our ability to provide the kind of attention we wanted to our children would drop exponentially after two, so that would definitely be our limit. It also felt like a nice, round number to us since, at least in theory, it meant that each of us could give one-on-one attention to our kids at any given time. Theory and practice often diverge someplace, but there is still value to us in the idea.

That sounds dynamite in theory until you add having a child with autism into the mix. It’s oddly common among parents I know that they have two children with their youngest child being autistic. It’s not much of a sample size for sure, and I’m not advancing any sort of theory here. For whatever reason, that just seems to be how it happens with parents around us. We have until now been the exception, and one that more people than just us have noticed.

One even more common trait that parents don’t really like to discuss is that for many of them their last child – no matter how many they have – is autistic. It’s not a dirty secret; it’s just something you quietly nod your head about and accept as an understandable decision. The time you invest in your children’s growth and well-being is immense. But it’s this particular issue that has piqued the curiosities of parents – with or without autistic kids – with regard to our decision to have another child after the J-Man.

Thankfully no one, at least to our faces, has questioned our judgment, though I imagine a few may have amongst themselves. But as with many things, we acknowledge the opinions of others and just move on with our lives. They had nothing to do with our decision.

I don’t recall us ever seriously considering not ever having a second child. There were a number of times we uttered, “I don’t know whether we can do this again” during the five-therapies-a-week periods. I know in deciding the timing of when to have a second child, there were plenty of days, weeks, and months where we quietly acknowledged that it wasn’t time yet.

Then there’s the thought no one is really proud of but every parent of an autistic child considering having another kid thinks about. Might as well be honest about it.

What if we have ‘another one’?

Obviously, parenting an autistic child is not some sort of disqualifier in having more kids. Plenty do. But you do have a huge decision to make with so many variables that it becomes an almost unsolvable equation. Studies are indicating that if you have an autistic child, you have somewhere between a 1-in-10 and 1-in-20 chance of having another. How do you feel about this? Will you be able to keep the level of attention going that your autistic child needs? Are you concerned about your ability to devote enough attention to each of your children? Can you afford care for each of your children? How will our child react to a new baby in the house? The list of questions can go on and on. You can paralyze yourself with them. And there are no clear answers. And I hate to disappoint you, but there never will be.

For us, I think it became a statement of faith in our relationship. Little did we realize how almost prophetic our wedding vows would become.

We shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love. When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.

We declared that day that we believe we can meet any challenge, and we realize now that our belief in that is stronger still. We have become pretty good parents when faced with a huge challenge. We’ve overcome and even thrived because we’ve discovered the frequent joy in these challenges. Most importantly, we’ve discovered that our J-Man is perfect the way he is and so full of love that it amazes us that his little body can hold it all in. And we believe our love for him can transcend those challenges and help us regardless of what comes next.

We did decide to have an amnio this time around. I was a little hesitant about this because while I know the risk to the baby in an amnio is very low, I’m not one who fully appreciates those kinds of statistical nuances. It was quick and fairly easy and we had the preliminary results in a couple of days – negative for all the quick and obvious stuff. We received the full report a few days after that, negative for everything they can test for. I must say that I liked having the amnio done more than I liked the idea of doing it beforehand.

We know there’s no test for autism, nor are there tests for a host of other health issues that might be part of his life. Life has few guarantees, and waiting on them will just do you in. It is nice to know certain things, however, even though nothing the report could have said would have affected us having the baby. Our rationale was that if something came back positive, we’d have time to prepare. Given how most of our lives are shaped by autism and the J-Man’s many needs, if the arc of our lives was going to have to bend toward another direction, we needed to know.

I am certainly not saying everyone in this situation should decide to have another child. This is simply how we arrived at our decision. We are nervous and excited, but most of all, we are deep-down at peace with our decision and can’t wait until we get to welcome our new little wonder into the world.


March 13, 2011

Dale Jr. is almost two now, and we have long since passed the point where we remember much about life without him. So much of what we worried about then seems like a distant memory now.

We got off to a sometimes rocky start, and our J-Man did regress pretty significantly for most of a semester at school. But we were determined to get us all out the other side, and we did that with the support of so many wonderful people. That’s as much a testament to the J-Man’s courage and determination as anything.

Is life with two challenging? You bet, but whoever said ‘challenging’ is by default a negative we should all avoid may not understand the concept very well. Great challenges often produce even greater joys.

Dale Jr. is pretty easy-going, has a wonderful sense of humor, is kind and loving, and is adored by everyone who meets him – just like they should! Many days feel like we have to relearn parenting, but that’s to be expected. Both our kids grow and change quickly. Every day brings a new discovery.

Life is often far more chaotic than I would prefer, but that’s largely about me and my still developing skills at coping with unpredictability and time management (such as that ever can be managed). But we’ve learned that we can fly pretty well by the seat of our pants and figure out much of what we need as we go. It calls forth the best of who we are and can be, and that is a wonderful thing.

We made the right decision for us at the time in which it was right for us. It’s important to keep both those things in mind as you think about having more children. This is true whether your children have autism, something else, or are considered ‘typically-developing’. I believe we do have a responsibility to our children to make decisions that are right for them. I definitely don’t think it should matter one bit to you what we’re doing or what anyone else decided to do. You have to look at your own relationship to each other as spouses and to your children as parents, your children and where they are in their lives, and the time and circumstances of life you are in right now, and then make the best decision you can based on that.

This is likely not the straight answer you were hoping for, but there’s never going to be an easy answer. If I have any guidance from there it’s to say, acknowledge those feelings of discouragement, uncertainty, overwhelm, and fear and patiently look for those more quiet moments where reflection is possible. I know in our chaotic lives that those can be very rare, but even a few seconds here and there can be enough. In time, you can gather up enough of these bits and pieces of reflections out of which the insight you’re looking for will arise.

Trust that you will make the right decision for your family, and I believe that will put you in a frame of mind where you will.

{ 3 comments }

Nature’s Way of Telling Me to Stop It

by Tim on July 20, 2009

Having the J-Man gone has been rather disorienting. We’ve handled it OK enough I suppose, mostly by staying incredibly busy and not allowing ourselves time to think much about it. Though I did turn on the video monitor a couple of times last night and tip-toe by his room once just from seriously ingrained habit. I admit part of me has accepted that I did need a bit of a break, and having a lot of continuous time to dedicate completely to Not-So-Little E has made me realize how important quality time like that can be.

Earlier today, I was staring out the kitchen window at our little patch of woods in the backyard. I was wondering (or worrying about) how the J-Man was doing, stressing about life, and generally looking blankly out at nothing when Nature decided to tell me what she thought about all this.

I was startled out of my infinite stress loop by a squirrel falling (with style) out of a tree and onto the top of our swing set, where – without any hesitation or wasted motion – it decided to assume the cat stance and lick its own butt.

Well, that’s one way of getting your point across. I get it, already. Thanks. Now don’t do it again!

{ 1 comment }

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.

{ 4 comments }

Starting to Sink In

by Tim on March 12, 2009

We haven’t posted much lately partly because of being endlessly sick, but partly because we’re starting to become more and more conscious of the enormity of the next phase of our lives. I know this is not really breaking news, but the idea that the baby is coming soon (like 7 weeks! or so…) is finally starting to sink in. We live so in the moment around here that anything not happening in the next 24-36 hours has almost no meaning for me.

This past weekend, we went out of town on what – barring some emergency – will be the last trip we take before the baby is born. I guess it’s the idea of knowing that something is the last anything before the baby is born that makes it more real. Perhaps it’s that it gives time some definition and clear edges, like I said, something that doesn’t happen much in our hour-by-hour world.

Mary and I have this running thing on long car trips that we’ll think about baby names to pass the time, but for the most part until now it’s been a car game like “I Spy” or “License Plate Bingo”. Now we’re at the point where we really do need to pick a name. We’re down to under a half dozen first names, with a likely candidate emerging. I find myself saying the names out loud, letting my voice get used to the possibilities and seeing how I feel when I say them.

With that being our last trip, it started me thinking about how on earth we’re going to travel on our next trip – whenever that will be – now with two kids given how getting out of town now with just one feels like it takes 10 people and an act of Congress. What feels like a sea of little questions fill my head and stress me out more and more. Which side of the back seat do we put the J-Man on and which side will the new baby ride on? With the J-Man, one of us rode in the back with him on long car trips. Now, we won’t be able to. How will he react to a baby back there? How will the baby do with neither of us back there?

It’s hard enough for the J-Man to be away from home and the routine and the things he’s familiar with, though he does better and better it seems with each trip. We can now tell how much he tries to understand new situations by relating them to situations he’s already experienced. This is a very helpful skill for him to learn, but knowing that’s what he is doing is actually somewhat anxiety-making for me. I have a much better idea of what he’s thinking we’re doing even though that’s not what we’re really doing, because he’s trying to make sense of something new with something familiar. It’s his confusion that I feel stress about.

[click to continue…]

{ 0 comments }

IEP Results – The Short Version

by Tim on August 26, 2008

Thanks to everyone for the good thoughts and well wishes for today’s IEP meeting. We appreciate everyone’s encouragement!

This is the brief version because we’re feeling baked right now. After all the emotion and stress that gets invested in the IEP process, now that it’s essentially over, all we can think about doing is crashing for the night.

After today’s 2 1/2-hour IEP marathon, we signed all the papers and everyone left with a sense that we had come up with a good plan. If ideal is 100%, I’d provisionally give the result about a 90%. The 10% difference felt like reasonable compromises. We had the perfect scenario in mind and a range in which we’d negotiate, and the result fell somewhere in there.

The main highlight is getting full-day, five-day-a-week preschool, which is sort of the holy grail here. The bonus came in finding out that the “structured learning” class (it’s not ‘autistic preschool classroom’ anymore here) has a much better teacher-student ratio than we had originally been told. They’ve been restructuring how they do preschool for autistic kids here, so people are still figuring it out. It’s three teachers for eight students, which just rocks. We were willing to give a little on services since he’ll be getting more individual attention than we originally thought in the classroom.

[click to continue…]

{ 3 comments }

Of IEPs and Heartburn

August 25, 2008

‘Twas the night before our IEP meeting… blah blah blah. [Catch up on the whole IEP saga here.] Getting past our IEP meeting with the school system tomorrow can’t come soon enough. For obvious reasons, J-Man’s 3rd birthday is in a few days and he ages out of Early Intervention so we are off that [...]

Read the full article →