Archive for August, 2008

Anniversaries

August 27, 2008

I’ve always been a fairly sentimental guy, so I like birthdays and anniversaries and days that give you a moment to reflect on what happened in the past and what your present is like.

Over the past week I’ve had the opportunity to mark two pretty big anniversaries in my life. One that is quite exciting and in this day and age all too rare. The other caused some pain.

First, the good one. My wife & I celebrated our 10th wedding anniversary. We had a great little getaway thanks to the grandparents watching our little guy for a few days. It was fun to take a trip down memory lane and recount some of the adventures we’ve shared over these past 10 years. We have no idea where the time has gone. It’s kind of neat to think back to a time when we were so young and didn’t really have too many troubles. I had a nice head of hair and a bright future. I’d like to think I still have a bright future ahead of me, but the hair…well, not so much!

During these 10 years we’ve certainly faced some challenges along the way, but we’ve really had a wonderful time. We used to be surprised at how many couples we knew who struggled in their relationships. We figured that marriage wasn’t rocket science and that we were kind of experts at it. Other than having a few minor arguments about directions while driving on road trips, life was pretty easy.

That’s where the second and not-so-good anniversary comes in. It was a year ago that we first became aware that something might be wrong with our son. We never saw it coming. Just one day before we we first alerted to it, we were taking a day to celebrate our 9th wedding anniversary. Even though our lives were more stressful than our first year together with a child and full-time jobs, we were still feeling like kids. Talking about future plans, future trips we wanted to take, hopes and dreams for our son and our little family unit.

But once our eyes were opened to the possibility that something might not be right with our son, our world was thrown into a tizzy. Fast forward to now and we can certainly see that we’ve accomplished a lot and our son is really doing pretty good. But just thinking about that time last year when all of this started gives me that sick feeling in my stomach all over again.

We’ve had moments this past year where we feel stronger than we ever could have imagined. But there’s also been times where I didn’t know if I could sink any lower. Suddenly I realized that you have to work a lot harder at a marriage when there’s a never-ending amount of stress to deal with daily.

Fortunately our marriage is strong enough that even with the challenges of this past year, we’re still here. Too many marriages crumble under the stresses that come with having a child with autism or other special needs.

I pray that no one else ever has to go through what we’ve been and still are going through. But with the rising autism rates, there are sure to be many other couples facing these challenges on a daily basis.

My hope is that someday this autism anniversary won’t even be remembered. In my dreams we’re too busy having fun as a family and letting others know how we recovered our son.

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A Bloody Mess

August 20, 2008

You may remember a while back I told the story about our first attempt at drawing blood from our son. It went reasonably well, so we felt confident for the next time we had to do it.

Well, the results from that first blood draw showed some elevated liver enzymes in our son. Our DAN doctor was concerned that it might be due to the chelation, so he advised us to skip the next two rounds of chelation and then get the blood retested. He didn’t think the liver was in any real danger, but just wanted to get a good baseline reading for how our son’s liver enzymes normally are.

And like everything else this past year, an adventure was awaiting us. I couldn’t quite remember the directions to the lab so yesterday I decided to look it up on the internet. I’m so glad I did. We had to go during the morning hours as that’s the only time that works between our son’s school and the fact that he naps during a good part of the afternoon. The lab used to be open from 8 to 4, but I noticed when looking up the address that it said they were only open now from 1 to 4.

I decided to call the lab to be sure and I got a recorded message. That message said they were open from 8 to 4. Of course you can’t actually speak to a human, so I had to leave a message asking what time they actually were open. Someone did call me back rather promptly and said they did indeed change their hours to 1 to 4. I mentioned they might want to change that on their phone message, but she didn’t seem too concerned about it.

So that crisis at least seemed to be averted. So instead of being able to go to the lab that is only about 20 minutes from where we live, we had to choose between going about 35 minutes to one in downtown Minneapolis and try to find a parking ramp and all that stress or drive to a suburb that’s a good 45 minutes away. We chose the latter option and felt confident that the morning would go smoothly.

First off, this particular ‘chain’ of labs we have to go to seem to like to locate themselves in the dumpiest office buildings they can find. We rode a very scary looking elevator to our floor. When you get to the lab there is no one to greet you at the front desk. You just sign in and assume that eventually someone will come and get you.

We waited for quite a while for the lab person to come out (and this time there was no Barry White music to soothe us like last time). Who comes out to greet us? None other than the lab tech from the other location we had last time that fumbled her way through the blood draw. You would think that traveling halfway across a huge city would enable us to elude her, but I guess we can’t shake her.

Long story, short…things did not go well this time. Even though our son apparently has some great veins, this tech couldn’t get any blood out of them. She just kept jabbing the needle and gouging his arm looking for blood. After doing this to both arms, we were all about ready to give up. Our poor little guy was so upset and his face turned all red and he had big tears streaming down his face.

The tech (or whatever you call her) then decided she would do a finger prick and drip the blood into some small vials. I didn’t think that would work too well, but I was hoping we would get some blood and that our 45 minute drive and taking time off school wouldn’t all be for nothing.

The tech was practically dripping blood from his finger all over my wife and the floor. This didn’t seem too sanitary to me. And she kept having me do things that seemed like only an employee should do. She kept saying, “Could you go in the drawer and get me some gauze?” So I’m digging through the drawers looking for stuff.

After it was done the tech then looked for some bandaids and said, “Man! I don’t know where anything is here!” She did not inspire much confidence in me. When we first got there she told me they were understaffed and that there are usually 3 people working there and she didn’t know when the other 2 were planning to show up today. She also asked if we got the results of our first test a couple of months ago and when I said we had she seemed surprised and said, “Oh good. It did work then.”

We drove home pretty stressed out but thought perhaps we had enough blood to get the tests done. Well a couple of hours later this same tech calls me to tell me she broke the vial and now we have no blood. But she excitedly told me, “I have some help here now! You can come back if you want to!” Um, I think we’ll pass.

I tell you, this autism thing is definitely an adventure. For what other reason would I ship pee to France, send hair samples to Chicago, give B12 shots in the butt, and watch drips of blood go into a vial only to be cracked?

I used to think that getting a poop sample would be the grossest thing ever, but I think that would be a walk in the park compared to our pee & blood fiascos!

What Kind of World Do You Want?

August 12, 2008

A while back my wife & I came across this great website called “What Kind of World Do You Want?” It’s based on a song by Five For Fighting and basically people can create and upload videos to the site which can benefit one of several charities. We noticed many autism-related videos on there and one of the charities is Autism Speaks. So we kicked around the idea of making our own video for a while and this past weekend we finally finished it! 

Every time the video is viewed Autism Speaks will receive a small donation. So all you have to do is sit back, relax, and watch a video slideshow of our little guy and the hopes we have for him.

I was hoping to embed the video right here on my blog, but it seems like getting their video provider on here is a lot more complicated that posting a youtube video on a blog. So…….

You can watch the video by going here.

The Best Medicine

August 8, 2008

I think it is true that laughter really is the best medicine.

Josiah’s always been a pretty happy little guy, but we’ve definitely gone for periods of time where we don’t hear a lot of laughter in the house. Over the past couple of weeks though, he’s been giggling up a storm and it really has done this heart some good.

He’ll laugh at things you would think of like tickling, etc. but probably the thing he gets the biggest kick out of these days is hearing us whistle. He’s been asking pretty much everyone he comes in contact with the last couple of months to whistle. Or as he says it sometimes, “Whiss-ole!”

Up until recently he just wanted to hear you whistle and he was content with that. But now for some reason he gets such a charge out of us whistling that he just laughs hysterically.

A couple of weeks ago my wife was out with some friends so it was just Josiah and I home for dinner. He was glued to one of his favorite tv shows and I was just kind of sitting there eating, feeling sorry for myself. All of a sudden, Josiah looked over at me and gave me the biggest smile and a giggle. It totally made my day and lightened the mood considerably.

So I guess this post isn’t anything deep (not that it has to be). I’m just enjoying some of the simple things these days. There were days when we first started dealing with autism in our lives that the thought of laughing seemed so far away. It’s nice that it’s making a comeback.