Archive for March, 2008

Urine Debt

March 31, 2008

So you may recall me writing a while back about having to collect some of my son’s urine to ship off to France.

Saturday was the big day to attempt to get a urine sample and then mail it off to another country. Our first battle last week was trying to get an extra urine collection bag. We had one but we wanted a back-up one just in case. The doctor we get these from is a good drive from our house and we won’t have an appointment for a while so I thought I could just get a spare bag at a medical supply store or a lab or something. I got quite the runaround and never did end up getting another bag. Apparently they only make so many of these and they’ve become a highly sought after collector’s item!

So on Saturday we got the sample, but as usual there was drama involved. Our son pooped as he was wearing the bag. But all was not lost as there was a good deal of urine in the bag. I was able to get the urine into a cup without any of the poop making it in too. Instead, the poop that was on the bag got on my hands. A few years ago I would have thought that was the most disgusting thing ever, but now it’s all in a day’s work.

I was relieved when we knew we had enough pee to fill the special vial. Then it was time to ship it off. I was probably more nervous for that than getting the pee in the first place. The directions made it sound like it can be a little tricky to send pee to another country.

Long story short….I decided to go with FedEx as I’ve shipped pee with them before (although it was only to Kansas that time) and the guy there was helpful and I had the added bonus of being the only customer there so I didn’t have to tie up any lines. We filled out all the forms and all that was left to do was pay. I started to wonder how much it would be. $10? $20? Well…the final bill came to $70! I guess since it was a Saturday I couldn’t get the economy option (which I’m told wouldn’t have saved me too much).

At that point I was just glad to get this pee out of my life so I paid and left the building. I asked my wife (who was in the car this whole time) to guess how much it cost. “12?” was her reply. When I told her it was $70 she didn’t believe me and I had to convince her that I didn’t have the FedEx guy print out a joke receipt.

Perhaps I should have seen if any of our local high school students are going to be exchange students in France soon. I bet they wouldn’t have minded taking along a small vial of urine with them and dropping it off for me. It’s the least they could do.

So I’m definitely becoming something of an expert with this urine collecting stuff. Perhaps I could freelance and help other families too. And despite the high price, if the urine does indeed get to France safely, I’ll likely be sticking with FedEx as my pee shipper of choice.

Later that night we also got a hair sample from my son. That wasn’t quite as eventful as the pee, although he got wise to what we were doing and kept moving to other parts of the room as we tried to cut a few strands of hair from the back of his head. At least that sample only has to go to Chicago in a pre-paid envelope.

Tomorrow begins Autism Awareness Month. You’ll likely be hearing a lot about autism in the news this entire month. On Wednesday (which is World Autism Day) they will be having lots of coverage throughout the whole day on CNN. Jenny McCarthy will be among the guests on Larry King Live that evening. I believe Anderson Cooper is also doing an autism-related show.

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Autism: The Musical

March 27, 2008

Ok, so one more link to add. I’ve been hearing a lot lately about the HBO¬†documentary called “Autism: The Musical.” It premiered on HBO this past Tuesday evening and I thought I wouldn’t be able to see it since we only get like 10 channels at home. But the HBO website is streaming the entire documentary on their website through Sunday. You can watch it here.

In a nutshell, it’s a 90 minute documentary about a group called The Miracle Project that puts on a musical starring a number of autistic kids. You get to view the behind the scenes workings of the musical as well as a glimpse into the lives of these families. I’m sure any family of an autistic child will be able to relate to the highs and lows these families are going through. I’m a big fan of documentaries anyway, and this one was quite well done. If you have the time, I think you’ll enjoy it.

 If you want to learn more about the documentary itself, check out the official website for it.

Links, links, and more links!

March 27, 2008

I was originally going to write about our experiences traveling home for Easter, but my wife has already done a superb job with this, so I thought I’d pass along some interesting autism-related links that I’ve come across lately. Perhaps that’s what I should just do from now on…let my wife write the good stuff and I’ll just link to it! She has a lot more patience to really sit and carefully craft her blog entries, while I get a little squirmy and can’t think too far ahead. Which is strange, because I write for a living, but I’m usually reporting on a topic, not doing this stream-of-consciousness thing that this blog requires.

I’ll definitely echo the sentiments my wife wrote about in her post. I actually suggested that on the way back from visiting family, that we not even stop in a restaurant. What’s the point if all 3 of us are stressed out. So we grabbed some food and sat in our car in the parking lot of a Home Depot to eat. Nothing fancy, but we all ate without incident, so that was a victory I’d say. As I ate, I also got to watch some guy in another guy devour a giant bowl of what looked to be chili. That was just a bonus.

Part of the reason for starting this blog was to hopefully connect with others who have kids with autism. My wife has met with a couple of other moms in the past few months, but I’ve yet to really have a meaningful discussion with anyone who has a kid on the spectrum. This past Tuesday we attended the first night of a 4-week series for parents of asd kids. It was a good experience. Even though we knew a lot of the information already, there were still some nuggets we took away from it. Actually I took literal and figurative nuggets away that night in that I ate some chicken mcnuggets on the way there. Word of advice…those are much harder to eat while driving than a hamburger.

But I digress….I’m looking forward to the remaining sessions and hearing of success stories and resources available in our community.

So some interesting things I’ve read this week include this op-ed piece from the Bismarck Tribune that was about vaccinations. I know it’s all the rage to talk about those these days and while I don’t understand a lot of it, I thought this was a good argument.

Another interesting piece was this article from the Chicago Tribune about biomedical treatments. We’re in the midst of this stuff and it was encouraging to read that it can pay off dividends over the long haul.

And finally I am looking forward to spending each day of April (which is Autism Awareness Month) with this prayer calendar from Children of Destiny. They’re calling this “Turning the Tide.” There’s a short thing to pray about each day regarding autism including ‘Healing for Broken Bodies,’ ‘Insurance & Expenses,’ etc.

So there’s today’s batch of links. Can’t believe March is almost over. Seems like there’s a never-ending list of things to do and now April brings more pressure as I have two fantasy baseball titles to defend!

Have a happy Easter!

March 20, 2008

Don’t know if I’ll post again before Easter, so I thought I’d take the opportunity to wish anyone reading this a Happy Easter!

Today I had the chance to eat something called a ‘hamdog.’ It’s a 1/4 pound hot dog wrapped in cheese, then wrapped in a 1/2 pound hamburger. It’s put into a hoagie bun and topped with chili, cheese, and onions. I didn’t quite finish mine. I’m not quite sure what to think of it. I guess my only advice would be to not eat one if you’re going to be spending anytime in close proximity to anyone else for several hours afterwards. I feel sorry for anyone who has had to come into my office today.

Not sure what the ‘hamdog’ has to do with Easter or autism. I guess I was drawing a blank for what to write today and this is the best I could come up with.

Easter does get me thinking about hope though. This is a season of rebirth and after the year we’ve had I definitely would welcome some more things to feel hopeful about. I could go on more about hope, but my wife did a great job in her latest posting, so I’ll just leave it at that.

Good Deals

March 17, 2008

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Just got an e-mail from the National Autism Association that from Tuesday through Friday of this week you can get 20% off of anything in their online store. If you’ve just been dying to have some autism-related merchandise, this might be your chance!

I’m particularly into the ‘1 in 150’ long sleeved shirt they have. I think that one would be a great conversation starter. I have a shirt that I sometimes wear that just says ‘relevant’ on it. Nobody ever knows what it means (it’s a magazine) so when I’m asked about it I usually first tell them that I decided not to wear my ‘irrelevant’ shirt that day.

I knew the current 1 in 150 autism stats before I started this blog, but I think it was seeing that shirt that made me think I should use that as the name for this blog. Hopefully through more research, we can decrease the numbers of kids being affected by autism. I’d love to someday have the number be something like 1 in 10,000. Then this blog could serve as a relic to a time when 1 in 150 were being diagnosed. Sadly though the rate things are going it may very well go in the other direction and be something like 1 in 50 before we know it.

Anyway…the sale at the National Autism Associaton’s online store runs frm March 18-21. All you have to do is enter “SUS08” during checkout and you get 20% off. I haven’t looked at everything they have but there’s a wide variety of clothing, magnets, etc.

Part of an Exclusive Club

March 14, 2008

Our whole lives we want to be part of the ‘in’ crowd. It starts back in pre-school and kindergarten when you want to be with the group that has the best toys or the best food at lunch. In junior high it’s all about being popular and hoping someone might dance with you at the next school dance. In college you want to be considered one of the intellectuals and position yourself for that big job right after graduation.

I know I’ve felt all of these things throughout my life journey so far. Eventually though you hit a point where you’re in your 30’s, have a family, and a secure job and you don’t know what club you’re vying for anymore. I’ve wondered in the past, should I join a book club? A Bible study? A softball team?

We usually get to choose the clubs we want to get in or there’s at least something we can do to get chosen. I’m now a member of an exclusive club though that I didn’t ask to be in and can be a scary one. It’s called the ‘parents of a child with special needs’ club.

To be honest, before our son was diagnosed with autism, the term ‘special needs’ made me think only of kids with visible effects. I knew very little of people with autism or other disorders that affect kids but may not be apparent upon first glance.

But once you get your ticket into this club you learn that you’re not alone. Not only is the autism club growing at an alarming rate, but when you start meeting with ‘special needs’ groups you learn about all sorts of other developmental delays. Even thought autism and things like Down syndrome don’t necessarily have a lot of things in common on the surface, the parents of these children deal with many of the same feelings. Feelings of loss, confusion, anxiety and of being overwhelmed.

So now that I’m part of this club I have an even greater respect for those who are parents of or work with kids with special needs. Whether it’s something that’s mild or a it’s a life-crippling condition I don’t think anyone can truly understand what it’s like until you’ve punched your ticket and gained entrance into this society.

Urine Luck

March 11, 2008

So, it looks like round 2 with the urine collector bag was a success. We didn’t get a ton out of it, but it was a little more than last time and I was able to drive it out to our Dr. to get in analyzed.

I now have a snazzy new banner on this website courtesy of my lovely wife. Thanks hon!

I’m always trying to think of new topics to post here and am drawing a blank at the moment. Like most things I think of doing, life has a way of getting in the way. I’m always thinking of running a 5k, writing a novel, etc. but to find the energy to do anything after a full day at work and chasing a two-year-old around can be a challenge.

My son’s favorite new activity as of late is sliding down our stairs on his butt. He has become quite good at it and he laughs his head off every time he does it. Yesterday he was wearing some track-style pants and it seemed like that was increasing his velocity as he slid down.

I love hearing him laugh. If I could bottle up that sound and take it with me everywhere I go, I would be a perpetually happy man. I’m so fortunate that even in the midst of dealing with autism, our little son is such a bright, joyful little guy. I was helping my wife while she was changing his diaper yesterday, so to keep him occupied while she wiped, I did a little game I love doing with him. I pretend to chew on his little armpits and he just laughs and laughs. It’s moments like those that life feels somewhat normal.

Urine Trouble

March 7, 2008

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A couple of posts ago I talked about all the fun we get to have these days with poop. Well, our lives aren’t just limited to poop. We also get to have fun with pee at least once a month.

Every month we make a visit to our DAN! (Defeat Autism Now!) doctor to have some kind of levels checked. To tell the truth, I usually have no idea what these levels mean, but apparently they mean something important. So the fun part is we get to collect a urine sample from our son.

If it were just a urine sample from you or me, that would be no problem. Just pee in the cup and you’re good to go. But alas a two-year-old can’t just pee on command into a cup, so we get to put these funky urine collector bags over his privates. What usually happens is the bag leaks overnight into his diaper so we have little to no urine to work with the next morning. In the past I’ve been able to wring out the spongy part into the cup and get enough urine to do the tests. But this morning there was barely any on the sponge.

So we put on another bag since we still had a couple of hours before leaving the house. Well my son who hadn’t pooped in about 3 days, decided now would be a great time to poop, so we had a collector bag smeared with his feces and of course there was some actual urine in the bag that was unusable.

But I guess we can be happy that we’re giving equal time to poop and pee battles these days. A couple of months ago I got to Fed Ex some of his urine to a lab in Kansas and I kept telling people that “I bet I did something today you’ve never done before…mailed pee to Kansas!”

Well now our dr. informed us we should run a test that will involve shipping his pee to France! How’s that for cool? I really wish I was making this up. I may never get to France myself, but I can be proud that a little part of our family (even if it’s in urine form) will get to visit. Hopefully I’ll get a postcard.

Take Me Out to the Ballgame

March 5, 2008

It’s another cold, dreary, snowy day here in Minnesota. Flipping on the tube over lunch today at work and seeing sunny skies during a spring training game in Florida has me excited for some warmer weather. It can’t come soon enough!

Usually the mention of baseball has me thinking of my favorite teams and players or my fantasy baseball teams. These days though I think about (or more accurately sing about) baseball on a daily basis. My son is quite the musical little fellow and his favorite song to request for me to sing is “Take Me Out to the Ballgame.” He requests this by simply saying “Game.” Sometimes it’s a soft, gentle ‘game.’ Other times when he needs that song right now it’s “GAME!!!”

I think I must have sang that song at least 20 times this morning during the half hour car ride to his school. I think it’s one of his stims that makes him feel better. Sometimes I get a little tired of singing that song over and over and over but I’ll take that as one of his stims versus banging his head on the wall or something. At home he’ll dance to it too by swaying back and forth.

I joke that we should take him to his first baseball game this summer but instead of getting there for the first pitch, we’ll get there for the 7th inning stretch so we can hear his song.

The funny thing is that sometimes I’ll be in the car without him and instinctively I’ll just start singing it. As long as I don’t start singing it while I’m in the grocery store or something!

Hanging out in Holland

March 3, 2008

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Perhaps you’ve already read this if you’re close to someone who has autism or some type of disability, but I’ve taken great comfort from this story that a couple of family members have e-mailed me since we started on this journey. It’s called “Welcome to Holland” and was written by Emily Perl Kingsley in 1987. Not only has this helped my perspective, but I feel it’s helped some of my family & friends understand what I’m going through…..

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

Wow! That really does explain things fairly well. There are days where I feel like the rest of the world is just flying by me and leaving me behind. I heard of exciting trips people are planning and going on, fun things other friends are doing with their kids, while we are still just trying to get our bearings. I wouldn’t trade a minute with my son and I realize that we’re in a holding pattern in Holland at the moment. Like this story said, it’s not a bad place, just different from what we expected. Will we be in Holland forever? Or will we get to Italy someday? Who knows, but I suppose I should start learning more about my new surroundings.

Are there any stories or quotes that you’ve found especially helpful on your journey?