Archive for October, 2008

Happy Halloween!

October 31, 2008

For the second year in a row, Josiah is a superhero. Last year it was Superman, this year Batman. A little piece of advice to parents of autistic toddlers….these pajama costumes are quite handy. We’re lucky some days to get Josiah to wear his shirt, pants, and coat, so I can’t imagine him wearing some elaborate, bulky costume. But he likes wearing these as they double as pj’s and are super comfortable. The cape in the back comes off with velcro too.

As you can see, he’s got to be about the cutest little Batman you’re ever going to see. Props to my wife for the little design she did with this picture.

I have to say to that it’s fitting Jo Jo is usually a superhero for Halloween. I think he’s something of a superhero everyday. He keeps a smile on his face even though he has to work so much harder than other 3 year-olds and we expect so much more out of him than any little guy his age should have to.

I hope he enjoys his day (I’m sure he’ll be wondering why everyone at school is dressed so funny today). And hopefully he’ll get a tasty treat tonight to enjoy (albeit in a gluten/casein free variety.)

Boldly going where no man should go

October 29, 2008

It’s been a pretty good week overall so far. Things got off to a bit of a rocky start when Josiah was up in the middle of the night early Monday for almost 3 hours. We were all dragging on Monday.

My wife was giving Josiah a bath Monday evening then and while she was doing that, I figured I had a couple of minutes to put my feet up and relax. I had just laid down on the couch and was starting to put a blanket on when I heard her say, “Oh no!”

I knew right away from here tone what had happened. Josiah had pooped in the tub. He’s never done this before, but I guess after being married to my wife for over 10 years, I’ve learned to read between the lines. I know what the “Oh no!” sounds like when he’s peed in the tub or if he’s trying to climb out, etc. But this one was just different enough that I knew he had gone #2 in the tub.

Sure enough that’s what happened. Not to pat myself on the back or anything, but I acted pretty calmly and swiftly. Without going into too much gory detail, I grabbed two plastic bags, used one for grabbing and the other one as a receptacle.

This was a decent idea, but I was having a hard time grabbing the “nuggets.” So I said out loud, “Screw it! I’m going in!” And then I just grabbed the remaining culprits with my bare hand and put them into the bag. My wife was pretty impressed.

With all the other stresses we have to deal with, I guess getting my hands a little wet and dirty isn’t too big of a deal.  And I can’t fault my son. When a guy’s got to go, he’s got to go.

I Can See Clearly Now

October 14, 2008

I mentioned in one of my last posts about some recent struggles trying to get Josiah to wear his glasses. About a year ago we noticed that Josiah was squinting and thought maybe he had vision problems. We even thought for a brief second maybe that’s what was causing the delays we were seeing. I remember for at least one evening thinking, “I bet he just needs glasses! He’s not autistic!” But alas, he did need glasses, and is also autistic.

It took us a good four to six weeks to get Josiah to wear his glasses. The minute we’d put them on, he’d take them right off. What ended up working the best for us was to sit across from him, put on his glasses, and then grab his hands and start ‘rowing’ together. We think it was at this time that Josiah really fell in love with music. We would sing “Row Row Your Boat,” “Day-O” and other assorted songs. After many, many days wondering if he’d ever wear the glasses on his own, Josiah finally caved in and started wearing them full-time. For almost a year he would wear them without incident.

Then a couple of weeks ago he just woke up one morning and refused to let us put them on. We thought it was a bit strange, but figured if we gave him a few minutes he’d give in. Well, almost two weeks went by without him agreeing the wear them. We were left to wonder….is he just showing some stubborn traits of a typical little guy his age, which could actually be a positive sign? Or are the glasses too tight? Wrong prescription? Since he doesn’t answer those types of questions right now, we were left to guess on our own.

In theory this shouldn’t have been that big of a deal. We know he’s capable of wearing them and with time we knew he’d likely give in and start wearing them again. But I think his glasses are full of symbolism for my wife and I. Anytime things got tough, we would say, “Remember how hard we battled with those glasses? Hey, we won that battle and we can get through this too!” So when he stopped wearing the glasses, I think we became disillusioned with the world and weren’t sure if anything would ever go right for us again.

In a way, Josiah’s timing wasn’t all that bad. We actually just bought a new pair of glasses and knew the transition from his old pair might be a challenge anyway. So now we could just focus on him wearing the new specs. We met with some of his therapists and they suggested that starting on Monday we would make it clear to Josiah that not wearing the glasses was not an option. They would spend the whole day putting them on if they had to.

Well, the good news is that he did great with the first day of this operation! Yesterday they struggled with it for a while, but eventually Josiah must have realized they were going to keep bugging him all day, so he ended up wearing his new glasses for a few long stretches. I was so proud of him when I went to pick him up and saw him through the window wearing his snazzy, new glasses. It also helped that when I saw him through the window, he looked at me, smiled, and said ‘Hi!’

He wore them the whole car ride home too. I couldn’t wait for my wife to get home so she could see how cute he looked. But just a couple of minutes after getting home, Josiah took off the glasses and was under no circumstances going to let me put them back on. He doesn’t seem to give my wife as hard a time though. I think he knows that she won’t cave, but that I’m liable to get frustrated and take a break when it gets too tough!

I don’t know that the battle is totally won yet. This morning we struggled for a while, but he was wearing them when I dropped him off at school. I’m sure we’ll have a few more struggles, but we’re already making more progress than I would have thought at this point.

Josiah’s not the only one with clearer vision through this though. As we’ve been wrestling around, trying to get the glasses on, it occured to me how much worse things could be. I can easily think that getting a 3 year old to wear glasses is the most challenging thing in the world, but there are so many parents out there facing much bigger hurdles than we are.

I’m so proud of my little guy and as you can see, he’s quite a cool lookin’ dude in his new frames!

The Waiting is the Hardest Part

October 10, 2008

I can really relate to Tom Petty today. The waiting really is the hardest part.

I’ve been told time and time again that raising a child with autism is a marathon and not a sprint. We implement a therapy or biomedical piece and while we’d love to have instantaneous results, we have to let things take their course and see how they play out. I understand this. But it doesn’t make it any easier to have to be constantly waiting.

It’s not that I’m that impatient of a person. I can deal with long lines, slow internet access, waiting for the mail to arrive, etc. But when it comes to recovering my son, I wanted it done yesterday.

There are so many stories of hope out there that inspire me, but sometimes they scare me too. In some of these stories, it seems like dramatic things happened right away. Maybe a child was put on the gluten free/dairy free diet and they showed rapid improvement. Or that first B12 shot caused them to speak more words than they ever had before.

It’s not that we haven’t seen improvement but it’s definitely a slow climb. I don’t think we were naïve enough to think we’d recover Josiah with just one shot or one round of chelation, but I always thought, “Wouldn’t it be neat if we gave him one B12 shot and he turned to us and said, ‘Man do I feel better!’”

When things don’t seem to be happening I always worry. Are we doing this right? Is he getting all the stuff he needs? Is there something we’re missing? The fact that he just turned 3 scares me too as I realize how quickly the past year just flew by.

For many parents it’s a revelation years into their journey that they can do the biomedical treatments. We hopped on board almost immediately with the diet, supplements, restoring the gut, chelation, etc. He’s been in intensive ABA therapies for almost a year too.

We’ve had moments where it seemed like the payoff was coming. He’d do something new and we just felt like some major breakthoughs were coming. But then we always seem to hit times like we’re in now. Times of regression. Unfortunately that seems to be what happens with so many of these kids. Right now I’m just clinging to the advice of other parents and professionals that sometimes these kids have a regression right before a major breakthrough.

If there was only one way to recover a child it might be easier to know that patience is necessary. But I feel like that with every passing day we’re losing time and I don’t want to find out later that there was some big component I was missing. People always tell us that we’re doing way more than most people do. That used to make me feel better but it also freaks me out because I feel like we should be farther along then.

You definitely learn a lot about yourself when you plunge into the world of autism. I would have thought I was an incredibly patient guy in the past, but I’m slowly, very slowly learning to just take it one day at a time. I don’t do extremely well in that regard many days, but I guess I’m a work in progress too.

And I do firmly believe that we will recover Josiah some day. What that recovery will exactly look like I’m not quite sure yet. But I can’t wait to write some posts in the future where I talk about how we recovered Josiah and how other parents need to be a combination of patient and vigilant at the same time when dealing with their own recovery efforts.

Something to laugh at

October 8, 2008

I wrote a post the other day about the importance of keeping a sense of humor through life’s challenges. I wish I took my advice more to heart some days, but it’s definitely a good idea to laugh as much as possible.

With that in mind, I thought I’d periodically post items that give me a good chuckle. We don’t have a lot of time at our house to watch tv, but when we do we like shows like “The Office” where we can escape into a fictional world for a half-hour and laugh at something.

I don’t watch “Saturday Night Live” religiously as too many of the sketches just drag on and aren’t all that funny. But every now and then they’ll hit one right on the mark. Here’s a sketch from last season that my wife and I have watched practically a dozen times. It’s really the performance of Kristen Wiig that carries this one (she’s the one who just loves a good surprise party in this clip). Watch, laugh, and enjoy….

Vodpod videos no longer available.

more about “Something to laugh at“, posted with vodpod

Where are my toys?!

October 7, 2008

After numerous spills with Josiah’s beverages we decided it was time to get our carpet professionally cleaned. All of his supplements cause his drinks to turn some crazy colors that leave some nasty orange and green stains. My wife found a company that specializes in ‘green’ carpet cleaning (meaning non-toxic, not the color green as we already have enough of that).

We thought they did a great job with the carpet and we can feel good knowing we didn’t use a bunch of chemicals that could harm Josiah. But Josiah was not too impressed with their work. We had to move everything off the floors including Josiah’s toys. When we got home and he couldn’t find his usual stash of toys, he was quite upset. He stuck his little lip out and started sobbing. Then he looked at me with the saddest eyes and he said, “Don’t cry!” It was hard not to laugh even though I felt bad for him. Whenever we’re trying to soothe him when he’s upset we’ll softly say, “Don’t Cry.” Now more times than not when he’s crying he’ll say that to us.

Luckily my wife and I were able to be heroes on this day when we brought some of his toys back up. He immediately grabbed some of his favorites and went to town. This gave us a good opportunity to try to thin out some of the toys so we don’t have so many out at once.

So all was well last night….clean carpet, happy kid….and no more crying.

All Done Donald!

October 2, 2008

Blog posts two days in a row? I know it’s a rare feat for me lately, but I thought I should start updating this a bit more. I remember a few years ago when I first discovered what blogs were, I would read certain ones and be annoyed if they weren’t updated regularly. I used to think, “How hard is it to write something everyday?”

Well it is harder than it seems. Some days I’m too busy. Other days I just don’t feel like it. But I guess I have to remind myself that this is a good release and it doesn’t have to be novel-worthy every time I post. Although if there are any publishers reading this who would like to advance me a sizable amount of money to start a book of my thoughts, I can try a little harder.

Anyway, just a quick, funny story that happened recently. We are so thankful Josiah is verbal. Anytime he says anything, I am happy. It’s still mostly of the one-word variety but every now and then he’ll bust out something with two or three words.

Recently at school one of his therapists was singing “Old McDonald” and I guess after so many verses Josiah had enough. He looked at her and said, “All done Donald!”

I was so proud of him. Not only is it funny, but it’s a good, spontaneous request. And I guess it worked because she stopped singing.

Sense of Humor

October 1, 2008

A friend of mine has been going through a tough time recently and the other day he said, “You know, even when life is tough, I think you have to try to laugh at things and keep a sense of humor, right?”

I told him I couldn’t agree more. This past year has definitely had its share of ups and downs and I shudder to think where I’d be if I didn’t laugh from time to time.

Sometimes I laugh at something funny my little son does. Other times it might be at a favorite tv show. And sometimes I just have to laugh at the absurdity of my everyday life.

As you can tell by any photos of my son on this blog, he wears glasses. When we first though he had autism last year we also noticed he would squint and it seemed like maybe he was having difficulty seeing. For a brief day or two we thought perhaps his eyesight was solely to blame for developmental delays and not autism. Unfortunately we found out he has autism AND is quite farsighted.

It took us a good six weeks or so to get him to wear his glasses. It was a stressful battle and there were definitely days we didn’t think we’d ever get him to wear the things. But eventually he relented and for several months now he’s been wearing them without incident.

That is, until this week. For some reason starting on Monday morning, he’s been refusing to wear his glasses. He’ll swat at our hands the minute he sees the glasses coming close to his face. He eventually did wear his glasses on Monday after a nap at school. But first thing Tuesday morning he started rejecting the glasses again. He didn’t wear them at all yesterday and as of this morning when I dropped him off at school he was still not wearing them.

What could be the cause for this sudden behavior? We have many theories, but there’s really no way of knowing. Perhaps it’s actually a good sign that he’s showing some typical 2-year-old characteristics by displaying his dislikes. Maybe the glasses are now uncomfortable or the prescription needs changing. Unfortunately with the communication barrier we have, we’re not likely to get an answer anytime soon.

So where does laughter come into all of this? Well, as stressful as this has been to see all our hard work with the glasses start to evaporate, my wife and I have had to step back and laugh a bit at our current glasses standoff. Either we are just getting better at dealing with these daily challenges or we’re just going a little crazy. Maybe a little of both!

At least in the midst of all, my son has also shown a sense of humor. This morning we were trying a lighthearted approach to getting him to wear his glasses. My wife started tickling him and telling him that he needed to wear them. So what does he do? He starts looking at us with an impish gleam in his eyes and keeps saying, “Glasses! Glasses!” I know somewhere inside of this kid lies a little jokester. As he teased us with those words, all we could do was laugh.

So we’ll see who breaks first with this glasses standoff. My hope is it’s just a passing phase and in a few days we can try to find something a little less stressful to chuckle about.