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Sunday, February 15, 2015

Jimmy Dugan: Are you crying? Are you crying? ARE YOU CRYING? There's no crying! THERE'S NO CRYING IN BASEBALL!
          Tom Hanks, A League of Their Own

Oh, how I wish I knew how and where to begin this. Over the past seven (wow, seven, really??!?) months, I have sat down on multiple occasions to try to pound out something or other on the computer to add to my blog (and if you are now envisioning the monkeys with the bone in the movie 2001, or Derek Zoolander pounding on the computer to get the files in Zoolander, then that’s about right), but nothing seems to feel complete. Sure there are plenty of times I read something that sets me off, and I start jumping up on my soap-box, only to say “whoa, whoa, easy now. No need to show everyone out there your truly crazy side.” I wish I had the dedication to post with decent regularity, like Jim who writes “Just a Lil Blog” about his autistic daughter, (Great site, definitely worth the read) but I don’t. Not sure why. I have a ton of excuses, but no real answers. So for now I hope you enjoy (and I hope I know where to begin).

I have a strong sentimental side. I am not ashamed to admit it. Even though my mom was tougher than most Navy Seals, and I had no sisters, I wasn't raised in one of those houses where you weren't allowed to cry. Now, that’s not to say that I am weepy. I was able to hold it together when I read my mother’s eulogy, remain stoic when my daughter went in for a 2-hour surgery when she was 5, and remain laser focused when the doctor handed us CJ’s diagnosis. But watching Terms of Endearment or A Walk to Remember always makes me misty.

Why do I share this, you ask? Because the times that I get the most emotional is when I watch my kids succeed. The most recent example of this came a week ago Friday, when my son crossed over from Cub Scouts to Boy Scouts.
(CJ waiting for his name to be called)
A little back-story first: In first grade, CJ decided to join Cub Scouts. Not sure why. I was never a Cub/Boy Scout, and never gave much thought to the matter. When asked if I was one in my youth, I would to joke that no, but I used beat up a lot of boy scouts as a kid. The closest I ever came was the court-ordered year I spent in Y-Indian Guides, YMCA’s answer to the Boy Scouts. But, I digress. 2010, First Grade, CJ jumps in with both feet, into the Cub Scout world. Well, not both feet, maybe one. Well, OK maybe just a big toe. But, HE decides. The wife and I, we have had nothing to do with the decision, and I mean zero. And because of that, we were always very supportive of whatever he wanted to do with Scouts. You want to go to a three day Twilight Camp that falls during your birthday? Sure! You want to go camping in a tent in the mountains with your troop, even though the weatherman forecasts snow and 80 mile-an-hour winds? You bet! (And yes, the weatherman was right on both counts.) I have to work late, so you want your mom to come to the meeting and teach all of your friends to build a trebuchet? Absolutely.

That’s not to say that everything went as smooth as silk, because that would be a lie. He almost quit at the end of his first year, and there were plenty of meeting nights that he begrudgingly went, and even a few that he missed. Not to mention CJ’s lack of tolerance for the kids that didn’t take the meetings seriously. On many nights during the drive home, I would get an earful, as CJ would repeat over and over about how this boy was running around the classroom during the whole meeting, or how that boy wouldn't stop talking. But my biggest struggle was CJ’s seemingly complete lack of engagement at the meetings. Often I would sit in the back, feeling frustrated by him not participating or even appearing to almost fall asleep.

But Last Friday was the big day. The “graduation” day from Cub to Boy Scouts. A large ceremony was held, with dinner and a show, and at the end, the boys crossed over a bridge where a member of their new Boy Scout troop greeted them and presented them with a new neckerchief. And that is where I lost it. Well, sort of lost it. Let’s just say that my eyes started leaking. As I stood there watching, I reflected back on the previous 4.5 years, and all of the progress that he made, challenges he overcame, and lessons he learned.
(CJ getting his new neckerchief)
Yes, I cried. And I am OK with that. For me, there is no greater reason for me to shed some tears then for the pride of both of my kids. I am constantly amazed at how far my son has come, and how much he continues to grow. And I am also always in a state of happy shock at my daughter, who is constantly stepping up to help out either her parents or her brother, all the while tackling her own life and issues.
(after the ceremony, on the bridge. If CJ looks a bit off, it's because he is about to break down himself)

So, next time you see me crying, instead of looking away, please feel free to offer me a tissue. 

Sunday, July 6, 2014

Go take a hike!

Harry Dunne: I expected the Rocky Mountains to be a little rockier than this.
Lloyd Christmas: I was thinking the same thing. That John Denver's full of shit, man.
Dumb and Dumber

          I am back! Sorry I have been away from this board for so long. I could make up a laundry list of reasons (read: excuses) as to why haven’t posted for so long, but the bottom line is that none of that really matters. What does matter, and the reason I currently post this on a completely infrequent basis, is to share my experiences in the hopes that they might help anyone out there.

This past March, a long-time friend of mine shared that she and her husband were training to take on the Incline, in Manitou Springs. For those that are unfamiliar, think a StairMaster on steroids. Seriously. Just look at this thing.
This is looking down the trail...

This is looking up...

To give you an example, apparently Kevin Bacon was here last week, (yes, THAT Kevin Bacon) and took on the incline. Check it out;, and said it almost killed him. True story.

When I told my wife about it, she said that we should plan a hike with the kids. To give you some perspective, we attempted to scale a 14er last year (Mount Bierstadt, at 14,065 feet). I say attempted, because the climb up the mountain was, for all intents and purposes, a colossal struggle, to say the least. It started with the complaining about being tired and then hungry, followed by him having to go pee about every quarter-mile, soon to be followed with a headache, and then finished off with altitude sickness. Needless to say, we didn’t make the peak. At about 500 vertical feet shy of the top, my son and I had to turn around and hike back down the mountain, while my wife and daughter finished what we started. The worst part is that my son lacks the endurance for distances. About every 100-200 yards, he would want to sit down and take a quick rest.

This was Mt. Bierstadt last year, at the start of the hike...

This is where CJ had to bail out last year.

Diane and Jackie made it to the top!

So when my wife suggested we make it a family outing, needless to say, I was a bit apprehensive. While the Incline is no 14er, it is a strenuous climb, going up 2000 feet in less than a mile, with some parts of the climb reaching over a 70 degree incline. Like this:

Not one to shy away from a challenge, I hesitantly agreed, bracing myself for the worst. We started by preparing CJ for what was to come, explaining that it would be a difficult hike, with an early start, and probably a long day all around.

One of the things I realized on the climb is that you have a lot of time to think, mainly because after the first two or three hundred steps, you find it difficult to talk, due to you trying to do other minor things, like breathe. And as I climbed, I started thinking about the similarities the hike had to our struggle with CJ’s autism. Often times, you struggle to make it up the hill, feeling like so many other families are doing better than you, while you struggle to find your footing. At other times, all you want to do is sit down, wondering if you even have the strength to go on. Then there are times that you need help to get past the next hurdle, or times when you help others to get through something that you were able to conquer. But no matter what, you keep going, pushing past levels you thought were possible, trying to reach another goal.

Us taking a rest and a snack.
The amazing thing is that there were no complaints, no headaches, and virtually no potty breaks. (The hike down was a different story) Near the end of the uphill part of the journey, the kids went ahead of us to the summit and waited, while my wife and I worked our way up the mountain. It took us an additional 20 minutes to get up to them, and at the end, as we approached the top, my wife looked up and saw them sitting at the last “step”, cheering us on. As I looked at them, I knew THAT was why we did all of this, and that we should never lose sight of that fact.
Us at the top!
Look at how far we came!

I hope that all of you are able to summit the struggles you work through every day.

Oh, and by the way, my friend that turned me on to this adventure, she had to take the bailout point, which is about 2/3 of the way up the hike. Sorry Mari, maybe next year?

Monday, March 11, 2013

M is for Movies..

I do not see plays, because I can nap at home for free. And I don't see movies 'cause they're trash, and they got nothin' but naked people in 'em! And I don't read books, 'cause if they're any good, they're gonna make 'em into a miniseries. – Shirley MacLaine
            Movies can be a fantastic release from our everyday lives. They make us laugh and cry, inspire us, remind us of days gone by or of hopes and dreams to come. But from what I can see, from the mind of an ASD child, they don’t see the movies the same way that everyone else does.  Going to the movies seems to be a stimulation (and often over-stimulation) of all of the senses at the same time. The sights of the people around them as well as the movie, sounds of said same, smells of a dozen different things at once, the touch and feel of the theater chairs and floor and piped-in air, and if the parent is willing enough, or is begged enough (guilty on both counts), the tastes of the popcorn, candy, and/or drinks.
From my son’s perspective, it is another tool to ask questions and learn as much as he can about some random facts, that I am sure he is storing somewhere for later use. Sometimes movies can turn into a bizarre episode of Larry King, with a litany of questions about details of the movie, especially when we are watching a movie at home. And if we are watching a science fiction movie, the questions come even more frequently and require even more detail. My wife and I joke that we might have the only 9 year-old well versed in the Einstein-Rosen Bridge theory (Stargate), string-theory of time travel (Doctor Who), and warp travel through space (Star Trek, of course). Watching a 2 hour movie at home usually takes about three hours, with me keeping the remote close at hand to be able to pause the movie at a moment’s notice. 
“Hey dad?”
“Yeah bud?” I ask as I press the pause button on the remote.
“So, why are there an army of robots trying to destroy all those ships?” (Batalstar Galactica)
“Well, you see, the humans created the robots. And then the robots got smarter than the humans and decided they could live without us, and wanted to destroy us.”
“Then why didn’t humans just turn them off? And stop making so many of them?”
To which I reply something to the effect that people must get dumber in the future, and that seems to stop the questions, almost a full 10 minutes. And then…
“Uh-huh?” I ask, pausing the movie again.
“If they park all of those little ships in the big ships, how do they turn them around? And do they need to be washed like a car does?”
And on it goes, me trying to explain the inner workings of a movie or show that am probably not paying that much attention to anyway, and him absorbing and asking logical questions about something set so far in the future that it may never happen, but wanting to understand anyway.

My son, studying how to build his own car-turned-robot...and my daughter thinking she has a pretty cool foot-rest

            And going out to the movies as a family is generally even more concerning than staying at home. All of the what-if scenarios play out in your head. What if he asks as many questions in the theater as he does at home? Or worse, what if he becomes over-stimulated and has a meltdown? What if he can’t sit still or decides to yell at the movie screen? I have heard some parents say that they don’t take their ASD child to the movies because they don’t want to take their child out of his/her comfort zone, but sometimes what I think they feel is that they, themselves don’t want to get out of their own comfort zone. Please don’t misunderstand. I am not judging, by any stretch of the imagination and I can totally relate. Often I find that I would rather stay at home with a ice-cold adult beverage and the college game on TV, then to venture outside the safety of my four walls.
            But we wanted to make sure both of our children would have a chance to experience seeing a movie on the big-screen. We didn’t want Jackie to miss out just because my wife and I were too nervous about what Christopher MIGHT do. So we decided to take him (and us) out of our comfort zone, and we tried to prepare for all possible situations, already knowing that we had no way of doing so. We did what we felt was the smartest thing for all involved (especially our wallets); we went to the “dollar” theater. (For the purposes of full disclosure, the move is actually $2.50 before 6pm, and $3.50 after that. It’s just easier to call it a dollar theater, in honor of the ones my wife and I used to go to when we were first married. I mean seriously what are you going to say? We went to the two dollar and fifty cent theater? Or we went to the discount movie theater? Sounds like I should be picking up a pair of Nike hightops while I am there.) We figured that way, if we had to leave early, or if he got too disruptive, we could miss some of the movie, or leave without feeling too guilty about wasting money for only 30 minutes of screen time for Jackie. Plus, if you go to the earliest matinee, generally those shows are a lot less crowded than the evening showings, and a lot less people to piss off if your kid starts to freak out.
            And the unexpected did happen, starting with neither of us calculating how much movie popcorn a five and six year-old could eat. I mean…really?!? At one point the thought of rigging up some sort of makeshift handles on the popcorn bag to put over my son’s ears, as an impromptu feed bag crossed my mind. Also, we did not plan for the 3 or 4 trips to the bathroom that he would have to make, in order to make room for more soda and popcorn. But as far as being disruptive?  The tool who got a phone call half way through the movie AND DECIDED TO TAKE IT WITHOUT LEAVING HIS SEAT, was far more of an annoyance than my son’s handful of whispered questions he would ask of me. As was the 6’3” man that decided to sit right in front of my children and partially block their view of the screen, despite the theater being only half full. And as they have gotten older and we have gone to more shows on occasion, his behavior has gotten better; I think in large part from him observing his sister and other movie-goers on how they act and react. I rarely get questions anymore when we are in the theater.
            Now on the twenty minute drive home, however……

Thursday, February 28, 2013

Suiting up

Van Wilder: Well just take a look at this... ya... doodles... I attended class today just about stayed the whole time too! Gwen: I'm glad you went to all your classes today. Van Wilder: And a few that weren't mine, I stepped in the wrong room, liked what I heard... stayed.
Ryan Reynolds and Tara Reid

            So last Tuesday was the IEP meeting. For the few of you that read my blog (thank you by the way) and don’t know what that is, it stands for Individual Education Plan. But for those of us that have children with special needs, it sometimes feels more like suiting up for a battle. Sure the name makes it sound harmless enough; but sometimes it feels like it is just you, or you and your spouse, against the entire school board. I realize that it really isn’t like that, but when you go into the meeting room, besides yourself, there is the special needs coordinator for the school, the teacher, a therapist or three, the principal, and often the district special needs coordinator, among others. It can feel more like a bail hearing than a planning meeting for your child’s education.
            Please don’t misunderstand me. I know that everyone in that room is trying to do what is best for my child. It is just that the cynic inside of me also realizes that the school is trying to balance what is best for my child with their current workload, budget, and demands by the district/community. It is easy for me to see it from their point of view. I have to worry about only one person, my son; whereas they have to worry about limited resources, other children with special needs, multiple curriculum plans, and the pressures from teachers, administrators, and parents just like me.
            And it does feel like I am getting ready for battle. My wife and I start the discussions around the same time the meeting is scheduled…basic overviews at first. Things like “this is what CJ is struggling with” or “this seems to be working, we should have them do more of that”. And as the days get closer, we map out a direction that we want to follow. The day of the meeting we have a “pre-board meeting” meeting, usually over coffee or breakfast, we talk specifics of what we hope to accomplish. And although the teachers want to do what is best for CJ, their perspective and ours is sometimes very different. They see him for a small part of the day, once you factor in the different classes, recess, lunch, library, etc; whereas we see and hear him and his struggles every day.
            So in the meeting, there is always a lot of give and take. Like any caring parent, we want to make sure the CJ gets every possible opportunity and resource that is needed (and often not needed) to help him succeed. That could be something as small as a “lunch bunch”, where on a once every other week basis CJ gets to have lunch away from the noise and overstimulation of the lunchroom, with one of his teachers in a separate room, and where he gets to invite one of his friends to join him. (Or in my son’s case, four friends.) Or something as major as additional speech, language, or occupational therapy. Or extra time to take tests. Or allowed to take oral tests versus written. And on the other side of the table, the school and educators need to ensure that they can provide for said needs, time, and/or duties. In a way I feel bad for the other side of the table, because I generally get what is needed for my son, because I push. Hard. I once told the district coordinator to go back to her office and think seriously about better fitting schools for my son. And guess what? That is exactly what she did.      Please don’t misunderstand. It is almost never an actual battle, and I know that the educators truly want to do what is best for my child. And they are almost always agreeable, or at least willing to find a solid solution that works. They are great people, and if I didn’t think they would get in trouble, I would buy every one of them a drink after the meeting.
            But for me, after the dust has settled, a little doubt creeps into my mind. Not about whether or not I did enough for my son, but if I did too much. My wife and I are not helicopter parents, by any stretch of the imagination. We don’t hover around our kids, wrapping them in bubble wrap, always at an arms length to kiss boo-boos. They learn that you’ll fall down, scrape knees, make mistakes. And that it is ok to do so. They also know that when it really counts, we are there, but only after they have tried it for themselves. No, the doubt comes from the opposite side of the coin. I wonder if perhaps I did too much, asked and was granted too much. For as much as I want my son to succeed, I want him to do it on his own merits, not because his preferential treatment was so great that he couldn’t fail. My greatest fear is that I will fail him.
            Or I could just be neurotic….

Saturday, January 26, 2013

Travels and Tribulations

Del: You're in a pretty lousy mood, huh? Neal: To say the least. Del: You ever travel by bus before?
[Neal shakes his head]
Del: Hmm. Your mood's probably not going to improve much.
-       John Candy and Steve Martin
I have been asked by several people to give some suggestions and tips on how to travel. I am assuming they mean on how to travel with an autistic child. Because if they are asking me for what I would suggest for myself, I would say don’t do it. Ever. And if you have to, take along alcohol. Lots of it. I look at travel as some form of ritualistic torture, by sadistic people.  Don’t get me wrong, I love going on vacation, and taking my family even more so. The sights, sounds, new experiences, and especially seeing them through my children’s eyes for the first time. It’s the getting there part that drives me crazy. Airlines are rude, riding in taxis is like riding a psychotic carnival ride, buses…well if you have ridden on a bus recently, then you know that the quote above is appropriate.
Travelling presents its own set of challenges, and travelling with children, even more so. Now add to that a child that cannot deal with loud noises, being restrained, crowds, or overstimulation, and the scene becomes chaotic, at best.
So why ask me? Good question. I tend to consider of myself to be lucky when it comes to travelling with my kids, because their behavior is always amazing, but always hanging by a thread, ready to snap at any time. But having taken CJ on more than two dozen flights, several commuter train rides, a few boats, a couple of bus rides, and lots of road trips, I would like to think that I have gleaned some level of understanding and skills that may help other families prepare for the joys (and and mishaps) of travelling with a child of special needs.
First thing I will say is plan for the worst. Imagine what would happen if your flight was delayed a couple of hours on the runway, or the train breaks down in the middle of nowhere. Would you be ready? How would you act, and more importantly, how would it affect your child? Would you have the necessary supplies needed to keep your child calm and entertained? Those are the events that you need to plan for.
When Diane and I made our arrangements to go to China to get our daughter, my wife decided to purchase two L.L. Bean backpacks. Yes, go ahead and mock me. Next up, matching sweat suits and running shoes. Then it will be early bird dinners. Yeah, yeah. I am pretty sure that I made many of the same comments when she suggested it. But her reason for suggesting it was sound. Despite many offers from friends to watch CJ while we went to get Jackie, we agreed that as this was a family decision and addition, Christopher should be a part of it every step of the way. So the backpacks were purchased for us to haul all of the crap we would need for the journey. CJ was 2 ½ at the time, and before his diagnosis. During that time, we just thought him shy, not very affectionate, and behind on his language skills. At that age, he was displaying echolalia, although we didn’t know it. All we knew was that he was copying everything we said, and we thought it adorable.
Trip to Mexico - CJ on the far right, and Jackie next to him

So there we were, travelling halfway around the world with two new backpacks. Looking back, buying those was one of the smartest travelling decisions we have made. Those bags have gone on every trip we have taken since, and despite a few scuff marks and soda stains, those bags are as in as good of shape as the day we bought them. I guess the point is this; part of planning for the worst is having the right equipment.
Filling the backpack, that is another story. No matter the age of your children, whether they be infants, toddlers, or teenagers, packing the bag is essential. Food is always a must, but for the people that say “be sure to pack healthy food” I say screw you! You try to get your picky child to eat carrots and celery while sitting on the runway of the Miami airport, and you can feel the thread getting pulled tighter and tighter with each “I’m hungry” or “is there anything to eat?” being muttered. Pick foods that your child will eat as well as enjoy. The last thing you want is to be fighting to get a hungry child to eat. And it’s not like you are feeding them that food all day, every day.
Jackie and CJ at the fort in Puerto Rico

But there also needs to be additional distractions like books, tablets, music, and (very important for the people around you) headphones for your child, all shoved into the bag. Anything and everything that you may think will keep them interested and entertained for the time needed. And make sure that you pack their “favorite” thing, be it a stuffed animal, blanket, or toy. (Look for a later blog regarding that.)
Most importantly, if your child is able to understand, prepare them for what they are going to face. With CJ, we like to start a couple of weeks ahead of time, and explain where we are going and our method of travel. We start light, mentioning we are going to take a trip and how. Then as they days get closer we add more details, such as size of the vessel, and appropriate behavior when we travel. By the time the day arrives, he knows what to expect and how to act. Remember, you set the tone for their behavior. If you are afraid of flying, or sailing, or the guy on the bus talking to himself, your child picks up on that, and will most likely act similarly. (That last one may be ok to be afraid of. I mean, what the hell is he keeping in the duffel bag he has on his lap anyway?) One of the greatest experiences is when you have boarded first, and you watch the passengers’ faces as they get on, to find the one or two that suddenly realize that they are going to be sitting in front of your kids. They look like they were just given the death sentance. However, if you have done a really good job preparing the child, and set a good example, by the end of the flight, there is a good chance that the person/people sitting in front of you will compliment you on how well behaved your children are. It has happened to me before, even if we have had a breakdown at home right before leaving for the airport.
The three of us in the pool on the cruise ship

Another key factor to making a successful trip is understanding what your child wants, if possible. If your child wants to have a window seat, do everything you can to make that happen. Even at a young age, I knew that CJ liked having a window seat. When travelling from Beijing to Lanzhou, we found that China airlines runs their planes very much like a cattle call. Our seat assignment had CJ sitting alone in the back of the plane, even at 2 &1/2, by himself. What the hell? We were able to work out a few trades before the plane took off, so that at we could have two seats together, an isle and middle seat. However I was unable to finagle a window seat. Little did I know what a problem that would be, until we started to taxi down the runway. That is when the meltdown started, and didn’t stop, even after CJ threw up all over my shirt. But I have to say, I have never seen a man move faster than the Chinese businessman did once the fasten seatbelt signs were turned off. So we got the window seat after all. Of course, I got to smell like puke for the entire 4 hour flight. Lucky me.
Turks & Caicos...and yes, that is one of the backpacks

If your child has issues being restrained, I am sorry to say that I am going to be very little help there. There has been more than one occasion where I have almost come to blows with flight attendants because CJ wouldn’t wear his seatbelt. The best advice I can offer is to place it over their lap to make it look like it is on, or fasten it very loosely, so that the child doesn’t feel it. Or just do what my wife and I do, where one of us plays lookout, and when the stewardess walks by, make it look like you are putting on their seatbelt. Because if the thing goes down, I am sorry but that strap across your waist will be very little help. Unless you happen to land on the island of Lost.
I can’t promise success the first time out, or the twelfth. But autistic children crave routine, and if you practice it enough times, hopefully the experiences will get easier.
Well, that’s about all I have. I hope that there is at least one piece of information that you found helpful, and maybe even inspires you to attempt a trip.

Monday, January 14, 2013

Happily Ever After...?

Why is it, do you think, that people get married? … Because we need a witness to our lives. There’s a billion people on the planet. I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything – the good things, the bad things, the terrible things, the mundane things. All of it. All the time, every day. You’re saying, “Your life will not go unnoticed, because I will notice it. Your life will not go unwitnessed, because I will be your witness.”– Susan Sarandon

When I was about to get married, at our rehearsal dinner, my folks encouraged everyone there to get up and give their advice on making a successful marriage. It was a very cute idea, and I even think that somebody video recorded the whole thing. Although I have to admit, some advice I took to heart, while others I promptly forgot. I mean, “don’t go to bed angry”….really? If that was the case, I probably would have been hospitalized for lack of sleep years ago. It just isn’t practical. People fight, especially when you live with someone every day, week in, week out, year after year. But I don’t recall anyone giving advice on how to have a successful marriage when you have children, whether they be autistic or not.
            There have been a few articles written on the subject, but in my opinion, too few. The most recent story that I have seen has been in the NY Times (article link here):
The statistics say that 50% of marriages end in divorce, and for parents of special needs children, that number is much, much higher.  A few years ago, when I was at an autism conference, I heard the figure of 90% being batted around. NINETY PERCENT. You can’t find those kinds of odds in Vegas. The question to me isn’t why it’s so high, but how to try to prevent yourself from becoming one of those 90%. The “why” part seems obvious to me. When you start out, it is just the two of you and (hopefully) that is great. And then you introduce a screaming, whiny, helpless “thing” into the relationship (and no, I am not talking about the mother-in-law), that now requires a lot of the attention that was being dedicated to just the two of you. Suddenly, the roles of the marriage have shifted, with one of you as the caregiver and one of you feeling like the shitty/absentee parent. I am generalizing of course; if I tried to cover every relationship scenario, this blog would quickly rival War and Peace in size. And as much as those of you that are reading this say “no, no, we share the child rearing role equally” or “that won’t happen to us, because I am going to make sure that carry my load”, I think we all know that is bullshit, to one degree or another. The scale is unbalanced, no matter how much you want it to not be, or how progressive your viewpoint.
Now throw in a special needs child in the mix, the scales become even more tilted to one side. Start adding in doctor’s appointments, therapy sessions, on-line classes, IEP meetings, support groups, and the like, and pretty soon there is no attention left to be dedicated to the two of you, all of it shifted to the child(ren) with the special needs.
So, what’s the secret to keeping that from breaking up the marriage? God, wouldn’t it be awesome if I knew that!  I love my wife immensely, passionately; but we are both human with our flaws (me more than her), and we are struggling through this quagmire, just as lost as everyone else. But I have some suggestions, of which you can totally use all of them, or flip me the bird and not use any. Or somewhere in between.
Work. Hard work. And teamwork. The big key to this it has to be done by both people in the marriage. Otherwise one person is going to feel left out and ignored, and the other one is going to resent having to do all the heavy lifting. That doesn’t mean that you both have to do the same things side by side all the time, or go to the doctor’s and or therapy appointments together. It means picking up the slack. For example, Diane does a fantastic job of getting both our children through their homework, something that I have no patience for. But for her to do that, she needs to focus fully on the kids, so I may help by making dinner, or emptying the dishwasher, or doing a load of laundry. You don’t have to move the world for the other person, but by doing the little things, you may do just that.
Communicate. Talk until you are blue in the face. Then talk some more. Even if it is about stupid stuff. Everyone just wants to know that someone is listening. And guys, this is the hard part…JUST LISTEN. (Trust me, I struggle with this more often than not.) As men we want to fix everything, but women just want someone to hold their hand while they vent. Or break down. Or both. Never stop talking. Once you start to think that you know what the other person is thinking or feeling, it will bite you in the ass. The communication also works well when it has been a tough day for CJ, and he is having an inconsolable meltdown, where no matter what you try to do, it has no effect, or worse, the opposite effect. A quick text of warning may go out to me as I am heading home, so that I can prepare myself for what awaits. This also allows us to tag-team the issue, allowing Diane to have a break in the basement, near the bar, while I go make my feeble attempt to calm him down or cheer him up.
Have each other’s backs. At least in public. I have my wife’s back and she has mine. And you will never see anything different. Even if we don’t see eye to eye on something at home, and I know that she is completely wrong, I will back up her decisions every time outside of the house. Weather it is the steps teachers or therapists want to take, or disciplinary actions with the kids when we are out on the town, I make sure she knows that I am on her side, even if we fought about it in the car on the way to wherever we were going. And I know that she has my back, and as much as she would like to hurl a dinner roll at my head on occasion, she backs my decisions whole-heartedly. Later, when the dust has settled from whatever the hell went down, and we are back at home, we will talk about what worked, what didn’t, and how to better approach it next time. (See what I did there? Brought “communicate” back into the conversation.)
Take time for just the two of you. Even if it is on a Saturday morning at the local coffee house. Spend time with just the two of you, without talking about the kids. Tough, I know, but someday they may fly the nest. And then all you are left with is that lump that has slept beside you for the last umpteen years.
Give each other time away. This one may be the most important. Everyone needs time to recharge their batteries. Both parties work hard in the marriage on different things, and that creates a lot of pressure. Whether it is a guys weekend camping, or a girls weekend at the spa, everyone needs a little alone time. Even if it is only for an evening of cocktails with the girls, or a Sunday football game at the bar with the guys. I always encourage Diane to get out on occasion; it allows me to focus all of my attention on my kids, gives me bonding time with just the kids, and allows Diane some much needed time away. Plus, it makes me appreciate all that my wife does when I am at work.
Will these things work? Who the hell knows. I am flying blind here, just like everyone else. Ask me after another 16 years of marriage. But I will say this, I may have dodged a lot of dinner rolls thrown at my head, but neither one of us has ever slept overnight on the couch because of a fight. We may go to bed angry, but we both go to the same bed.
Best of luck to you.

Thursday, December 13, 2012

The Day Santa Was Mortally Wounded

“And when Santa squeezes his fat white ass down that chimney tonight, he's gonna find the jolliest bunch of assholes this side of the nuthouse.” – Chevy Chase
Several years ago, a version of this story was circulating the internet;
I remember my first Christmas adventure with Grandma. I was just a kid. I remember tearing across town on my bike to visit her. On the way, my big sister dropped the bomb: "There is no Santa Claus ," she jeered. "Even dummies know that!"
My Grandma was not the gushy kind, never had been. I fled to her that day because I knew she would be straight with me. I knew Grandma always told the truth, and I knew that the truth always went down a whole lot easier when swallowed with one of her "world-famous" cinnamon buns. I knew they were world-famous, because Grandma said so. It had to be true.
Grandma was home, and the buns were still warm. Between bites, I told her everything.
She was ready for me.
"No Santa Claus?" she snorted..."Ridiculous! Don't you believe it! That rumor has been going around for years, and it makes me mad, plain mad!!
Now, put on your coat, and let's go."
"Go? Go where Grandma" I asked. I hadn't even finished my 2nd world famous cinnamon bun..
"Where" turned out to be Kerby's General Store, the one store in town that had a little bit of just about everything.
As we walked through its doors, Grandma handed me ten dollars.
That was a bundle in those days.
"Take this money," she said, "and buy something for someone who
needs it I'll wait for you in the car."
Then she turned and walked out of Kerby's.
I was only eight years old. I'd often gone shopping with my mother,
but never had I shopped for anything all by myself.
The store seemed big and crowded, full of people scrambling to finish their
Christmas shopping . For a few moments I just stood there, confused, clutching that ten-dollar bill, wondering what to buy, and who on earth to buy it for.
I thought of everybody I knew: my family, my friends, my neighbors, the kids at school, the people who went to my church. I was just about thought out, when I suddenly thought of Bobby Decker. He was a kid with bad breath and messy hair, and he sat right behind me in Mrs. Pollock's grade-two class.
Bobby Decker didn't have a coat. I knew that because he never went out at recess during the cold weather.
His mother always wrote a note telling the teacher that he had a bad cough but all us kids knew Bobby Decker didn't have a cough, he didn't have a good coat.
I fingered the ten-dollar bill with growing excitement. I would buy Bobby Decker a coat! I settled on a red corduroy one that had a hood to it. It looked real warm, and he would like that.
"Is this a
Christmas present for someone?" the lady behind the counter asked kindly, as I laid my ten dollars down.
"Yes ma'am," I replied shyly. "It's for Bobby." The nice lady smiled at me, as I told her about how Bobby really needed a good winter coat. I didn't get any change, but she put the coat in a bag, smiled again, and wished me a Merry Christmas.
That evening, Grandma helped me wrap the coat (a little tag fell out of the coat, and Grandma tucked it in her Bible) in Christmas paper and ribbons and wrote, "To Bobby, From Santa Claus" on it.
Grandma said that Santa always insisted on secrecy. Then she drove me over to Bobby Decker's house, explaining as we went that I was now and forever officially, one of Santa's helpers.
Grandma parked down the street from Bobby's house, and she and I crept noiselessly and hid in the bushes by his front walk. Then Grandma gave me a nudge. "All right, Santa Claus," she whispered, "get going."
I took a deep breath, dashed for his front door, threw the present down on his step, pounded his door and flew back to the safety of the bushes and Grandma.
Together we waited breathlessly in the darkness for the front door to open. Finally it did, and there stood Bobby.
Fifty years haven't dimmed the thrill of those moments spent shivering, beside my Grandma, in Bobby Decker's bushes.
That night, I realized that those awful rumors about Santa Claus were just what Grandma said they were: ridiculous.
Santa was alive and well, and we were on his team.
I still have the Bible, with the coat tag tucked inside: $19.95.
Now being the guy that likes that kind of sentimental crap, that story has always struck a nerve with me. So much so, that my wife and I had played “Santa” on a couple of occasions when we knew of friends that were struggling. And I had always vowed to use that when it came time for my own children to question the existence of the jolly fat guy in a red flame-retardant suit. So imagine my surprise, when almost a year ago my son came downstairs, long after bedtime, with a strange look on his face. It was past 10 at night, and Diane and I were baking cookies.

(I think I went a little overboard on the lights)

ME-Hey bud, what’s up?
CJ-I have to ask you something. (Long pause, followed by an 8-year old pointing finger) Is Santa real? Tell me the truth.
Now, Diane and I have always tried to be completely honest with our children, but being hit with this at 10 at night was a slap in the face.
ME-Who told you that?
CJ-Laurie at school said that Santa wasn’t real. Is he? Tell the truth!
At this point, my wife and I took him over to the couch and sat down, both of us trying hard to not cry. And all of my planning to have him help us deliver gifts to someone less fortunate flew out the window.
ME-You know that Santa is just a fat guy that delivers presents right? (His finger pointed to me, and I nodded, although I have lost a bunch of weight. He sat in our collective laps processing this information.)
CJ-What about the reindeer that eat the carrots?
ME-Have you met my reindeer? (I pointed to Diane, and he giggled, through tears) And now that you know, you get to be one of Santa’s elves, and help put presents out for your sister.
CJ-Can I eat the cookies? (I nodded. Then his brain took off as it did some quick reasoning, all within 30 seconds) So wait. Is the toothfairy real? (again I pointed to Diane) What about the Easter Bunny? (I pointed to both of us.)
He seemed satisfied with that answer, and went back to bed, while Diane and I mourned the loss of innocence. He helped with presents (and cookies) that Christmas, and I thought that was the end of it. But lately, he has made several comments, like “I wish I hadn’t found out about Santa” and “I’m sad that Santa isn’t real.” I keep telling him that Santa is real and trying to explain that his spirit lives in each of us, but it doesn’t seem to sink in. So if anyone knows of a needy family that we can deliver packages to this year in secret, to see the joy on their faces, I am all ears.

Merry Christmas to all of you. I hope that your Christmas is all that you hope.