Normally on Mondays, I write a weekend recap and crack jokes about all the odds and ends of my weekend travels. But today, you’re getting Jack. Literally. There are a lot of things about my son Jack I want to blog about, so that’s what today’s focus is going to be.
Just in case this is your first time here, I’m a father of there and a marathon runner. My middle child, 6 1/2-year-old Jack, is severely autistic. I recover well from my races, and I know that’s a gift, so last year I came up with the idea of making the most out of that gift by running 60 marathons in 2010 to raise money and awareness for a charity called Train 4 Autism.
So far, so good … kind of. I’m on schedule, through 28 of the 60 marathons so far, and I think I’ve raised somewhere around $25,000. Not totally sure on that number, but I think it’s somewhere in that ballpark.
Yesterday I struggled miserably through the San Diego Rock ‘N Roll Marathon. If you watch NASCAR for the crashes, you should read my race report. I definitely needed to be shut down crashing hard.
Now, on to Jack.
A Traumatic Visit To The DAN Doctor
If you’re not very familiar with autism, DAN stands for Defeat Autism Now and DAN doctors focus on biomedical treatments. There’s a lot of controversy in this area of the autism community and people either believe in their methods or they don’t, but there’s not a lot of middle ground. It’s almost civil-war like in the autism community. That’s one of the joys of Train 4 Autism — we let you pick the autism-related charity of your choice to be the beneficiary of your fundraising efforts.
Anyways, we went to a DAN doctor a few years ago. Our pediatrician recommended it. Doctors typically don’t recommend them, because their treatments are viewed as alternative. They focus on nutrition and supplements, not drugs. One popular theory out there is that vaccines cause autism, and while there’s no definitive answer yet, if you’re a parent in our position, you leave no stone unturned for your child. We’re not going to get time back for Jack, and we’re in a race against the clock to get him as close to mainstream as possible by the time he’s 18.
We get a lot of information and we weigh it all very carefully and make decisions. It’s a very difficult thing to do and the decisions we make for Jack’s treatment are probably the most critical thing we’ll do that will impact any of our three children’s development.
We weren’t pleased with the service we received from our DAN doctor a couple of years ago, so we stopped that treatment. But we still considered the idea. Through Operation Jack, I came in contact with people who could reliably recommend a very good DAN doctor. We set an appointment, and made a 90-minute drive for our initial visit last Thursday.
To say the least, we were infinitely more impressed with this doctor than with the previous doctor we saw. The first doctor we saw seemed to give a generic plan for Jack without really listening to us. But the new doctor asked lots and lots of questions to dig deep and really find out what’s going on with our little guy. The plan really seems tailored to him, and we’re really excited about it. Well, I’m a little more excited than Tiff, because she has 14 different things she needs to do daily. But like I said, when you’re in our position, there’s nothing you won’t do to try to make things better.
So why does my headline say this was a traumatic experience?
Because at the end of the visit, we had to go into a different room, where they drew blood samples from Jack for testing, plus they inserted an IV to get key nutrients into his system.
I had to lay on the table with him and physically restrain him. He was screaming in terror. At first, he was saying, “Stop! Stop!” in his broken English. Then he turned to his comfort zone, numbers, and shrieked out a “three, two one!” because he didn’t know what to say. Then, in his jumbled little words, he got out, “I want white rectangle.” No idea what that meant, but it was so, so sad, because he was in a ton of fear and he seemed like he was in a state of panic. It was completely heartbreaking.
Our older son Benjamin’s first-grade teacher’s name was Mrs. McCarthy, and I couldn’t help but look at him and think that he should have been in Mrs. McCarthy’s class at that moment, learning and getting ready for recess. But he was getting held down on a table in a doctor’s office, screaming in terror, and that wouldn’t have been the case if he wasn’t born with autism. It really made me sad.
He was clingy afterwards, and during the drive back, he was very quiet and reserved. I kept looking at him in the rear-view mirror and he looked so sweet, innocent and sad. I was so heartbroken and it left me in a haze for about two days. That’s a sight I’m not going to forget any time soon. I don’t know if the incident was more traumatic to me or to him, but it was rough.
The visit to the DAN doctor was definitely worthwhile, though. Painful, but worthwhile.
We Got Good News!
We’ve struggled with a little bit of bad news with Jack lately, so we were due for some good news. First, we thought we were losing a considerable amount of the services he’s been getting, and as parents, that scared us a lot. You can’t get time back, and every day is critical as he tries to break free from this neurological disorder that holds him down.
I blogged about this a couple of weeks ago and let y’all know. Well, that same day, we were notified that we were approved for Medi-Cal for Jack, a state-run insurance program that will help him obtain some services we’ve been trying to get. That at the very least offset our fears of losing half of the behavioral therapy hours we get for him. So that was a definite bit of good news.
Well, I forget what day, but it was sometime since last Thursday that we got official notice that we’ll only be losing three hours of behavioral therapy (down from 17/week). That’s definitely manageable, so Tiff and I collectively exhaled with relief. Plus, if we get him into some other services, it’s not like the weeks are getting any longer, so maybe this will all work out even better. Whatever the case, we were very happy when we found out both of these things (Medi-Cal, plus only losing three hours).
On top of that, we declined enrolling Jack for summer school this year. Last year, the summer staff consisted of instructors who we were unfamiliar with because they didn’t work at his school during the school year (he’s in the local public school district). We pulled him after one day, because there were quite a few things we were extremely uneasy about.
It’s tough on Jack to not be in school in the summer, because he thrives on his routine and he regresses when he’s out of the program for three months. But we chose to decline summer school this year, because we were pretty uncomfortable with what we saw last year. Well, early last week, we found out that the teachers he’s been with this year will be teaching summer school. But we had already declined!
So we talked to the teacher, who talked to the administration, and they let Jack in for the summer. This is absolutely in Jack’s best interests, and we’re really happy about this. It also works out well for our other two children, Benjamin and Ava, because while Jack is in school, Tiff will be able to do things with them that would be difficult with Jack (like going to the pool, etc.).
So in about one week’s time, we got three separate bits of good news. It’s about time — we were overdue!
My grandma loves penguins. And she has a soft spot for Jack (who doesn’t?), because her son, my uncle Marty, also has autism. She’s developed a bond with my wife over the past several years. Anyways, Jack’s school had open house on Thursday night, and we got a lot of his art projects from this year to take home. One of those items was a penguin, and I knew the minute I saw it that we’d be giving it to my grandma.
We had dinner with my grandparents (and my dad, stepmom and brother) last night, so we brought the penguin and gave it to her. Needless to say, she really, really liked it. I’m sure Jack had some kind of help making it, but I know he did it, and it’s her newest treasure. We took a picture afterwards. My grandparents are a lot more alert than they look in this picture, but the sun was in our eyes and it was kind of chaotic.
That sun in our eyes was awesome.
Jack Moment Of The Weekend
At dinner, we were talking when we were done, and out of nowhere, Jack started screaming very loudly. That was our cue to go. We got him ready to go out of his seat, but we realized he’d kicked his shoes off, so we went to get them on. I think me and Tiff miscommunicated who was holding on to Jack (he darts), and before we could blink, he took off running through the restaurant, straight from the back, where we were seated, towards the front door. Tiff made a mad dash after him. We’re used to this kind of stuff, but I’m sure it looked odd to other folks in the restaurant.
That’s All For Today!
If you got to the bottom, I really appreciate it. I like to write my jokes in my blogs, but Jack means more to me than any of that and the fact that so many of you want to know how he’s doing means a lot to me. I really appreciate you reading and caring. Have a great Monday!