March 2011

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.

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Tired Feet and Happy Soul

by Tim on March 21, 2011

Short post. Still a bit too tired and achy and needing some time to get perspective in order to write a full account. But I am now officially a marathoner!!

It was physically the toughest thing I’ve ever done. I’ve never run anywhere close to that distance before, my longest real run in training being about 19 miles. But I knew I would make it. I’ve had great teachers both tall and small to show me how to meet challenges, persevere, and do what once seemed impossible.

Thanks to all of you who have supported me through this journey. Your encouragement has meant a lot to me!

Full report to come when I get some time. For now – yay!!

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Today is what we call Diagnosis Day, the day on which our J-Man was diagnosed with autism three years ago. We have in the past struggled with how one might observe Diagnosis Day or whether it’s necessary to really do so. In our “Diagnosis Day – 2nd Anniversary Edition” last year, we thought about it like the equivalent of renewing your wedding vows. Over time I’ve come to think of it as an opportunity to look back at how far we’ve come as a family in the past year, to give thanks for all those who have helped us, and to renew our commitment as parents and advocates to our children’s growth and to the rights of all children. But as we wrote about on that first Diagnosis Day, the vivid memories of that day always stay with you.

That day three years ago, I felt an entire range of emotions. I was angry, fired up, in despair, filled with resolve, weighed down with fear and every other emotion you could imagine, but most of all overflowing with love for my beloved son. The diagnosis brought a sense not of finality, as no future is ever completely written, but more that we were in this for the long haul now.

These therapies we’d been doing for much of his life weren’t a temporary detour from some other existence. We wouldn’t be taking any exits off this road any time soon. And the best thing we could do was make our peace with that, grieve whatever we needed to, and prepare ourselves for the journey ahead and all the adventures it would bring. The image that came to my mind repeatedly was that now we were running a marathon, and we needed to learn how to run that kind of race from here on.

People often see marathons as a dour battle against suffering and pain. Running is regularly thought of as painful, hard, and even unnatural. Many who ponder just the concept of trying to complete a marathon do so in terms of survival. This is unfortunate as I’ve learned that distance running is so unlike this. It is as much about the journey as completing a distance. It is about learning to put one foot in front of the other and piecing those small steps together into a far grander whole.

Running a marathon seems ludicrous to most of us, but taking that one next step doesn’t. We can be so overwhelmed by the enormity of things in our lives that we can’t even see past that let alone know all the steps we have to take to get where we hope to go. But give us a single, next step, and often we can do that much. And that’s exactly how a marathon is run. I tend to think that I’m not running these seemingly crazy distances; I’m just putting steps together, one after another, over and over again until I get there. This is how our lives can work.

Divide a challenge into its smallest parts, and in doing so we discover a way to overcome it. It is about realizing that what we perceive as our limits really aren’t, that we are so much stronger and more capable than we think we are. It is about going after what is possible rather than focusing on what seems impossible. It is about believing that you can come to the start line, answer the call to go, and somehow achieve something you’ve never done before.

I used to think I would never do something like run a marathon. Eight months ago, I was struggling just to get up off the couch. But in working these five-and-a-half years with this remarkable boy, I’ve learned that so much is possible if you just take one small step at a time and believe that somehow it’ll all add up to something amazing. I see how far I’ve come since I got up off that couch and decided to make big changes in my life, and I am astonished. I have a long way to go, but that’s OK. I will always believe that I wouldn’t have known how to come this far without our J-Man’s example to guide me.

Now our not-so-little-anymore wunderkind Dale Jr. is showing us to see life from yet more perspectives. He seems amazed at so much of his world, regardless of whether it’s something great or small. He just looks so in love with the world. His exuberance infects me and energizes me. He is our adventurous child, rarely afraid of diving into something. He explores and experiments, he creatively figures things out, and he is undeterred by anything. He soaks it all in and misses nothing.

Our two sons are developing differently, but in doing so they offer us a far richer understanding of the world than we would ever have otherwise. If the J-Man first taught me the path to achieving something great in my life, perhaps Dale Jr’s adventurous and exuberant spirit has taught me how to just believe, dive in, and go for it.

This year, and honestly quite by accident, I’m doing something completely different for Diagnosis Day. The marathon I’m running tomorrow just happened to fall on March 20th. They didn’t schedule it just for my benefit, of course, and besides I didn’t even connect the two until about a week ago. I don’t know why I didn’t before then. I had a whole set of reasons to take on this challenge, and the race falling on the same weekend as Diagnosis Day added the exclamation point on the end of the sentence.

So tomorrow I will celebrate everything I’ve learned from my kids and from my life. I will proclaim that even with all these challenges we face and all the effort they require, I am stronger than ever for it. I have come back from a difficult place in my life. When some people assume that parents of special needs children are doomed to an existence of unending struggle and despair, maybe now I can show them it is possible to be that parent and do some pretty kick-ass stuff. And tomorrow I’ll think a lot about my grandmother because I think that’s the kind of attitude she would appreciate and want me to follow in life.

Four or five hours after this weekend’s marathon begins, it will end. The marathon of our lives will continue on. But now I know how to run marathons. I know how to train for them. I know how to get up off the ground on the most difficult days and keep putting one step in front of another until my feet are solid under me again. And I know all this and more because of these courageous, adventurous, determined little boys who taught me to believe that what seems impossible never is.

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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.

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