I’ve been having a hard time finding the words to say how amazing a mother my wife is. She’s been great since the day we brought my son home, but I’ve seen her really shine ever since we’ve been dealing with autism in our lives. All mothers deserve a nice day today, but man these mothers of autistic children should get a little extra recognition today.
My wife does everything for our family. I love you hon and I hope you have a great day!
I’ve had to come face-to-face with a rather ‘inconvenient truth’ lately. I shop at natural food stores now. I’ve become ‘one of those guys.’
You know the guys I mean. Shopping for granola, buying natural products, wearing their hair in a ponytail regardless of their age, wearing Birkenstocks with wooly socks.
Ok, well I don’t have a ponytail yet (that could take years to grow…maybe I could get a clip-on one?), and I don’t like to wear sandals (although in the spirit of telling the truth, I did use to wear socks with sandals a few years back until I was teased by our office secretary.)
I am a shopper now though at natural and organic grocery stores. Now that our son is on an organic, gluten/casein free diet, this is a necessity. We can get some stuff at our regular grocery store, but these special stores have so much more.
The first time my wife and I went to one to look for stuff for our son, I almost had the feeling I imagine one has going into an adult bookstore for the first time (not that I would know). What would I find in there? Should I make eye contact with anyone else? What if someone I know sees me going in there?
Ok, so it’s not like it’s embarrassing to go to a natural food store. But I know I used to think it was odd when a former co-worker of mine was eating organic stuff. He would always have some kind of drink with a weird name, lot of sprouts and tofu, and he even used something called “Tom’s of Maine toothpaste.” Well, as of a few days ago our house proudly contains some of “Tom’s” toothpaste (just for our son though, I’m being defiant and still using Crest.)
The first few times we shopped there I got a kick out of all the ‘earthy’ people I encountered. There’s really a few categories these shoppers fall into. There’s the middle-aged ponytail guys I already mentioned, there’s the really old couples who are rail-thin and are always looking at things like flax and/or natural toilet paper (which is one thing I think I’d definitely have a hard time buying. I’m all for the environment, but my butt needs a little more than sandpaper to get the job done). There’s also the goth-type looking chicks too who are kind of pale and look like they could use a hamburger.
The last few times we’ve gone though, I feel a bit more comfortable there. The more I’m learning about all the crap that’s in our regular foods, the more I appreciate a store like this. I thought we would be doing this organic thing just for our son, but I would probably do well to limit my intake of arsenic and other hormones that are in our foods. I’m hairy enough the way it is, the last thing I need is to accidentally get some more testosterone or something from a cow.
I appreciate that these people who own these stores and shop there are trying to do something to make us healthier and to save the environment a bit. I have quite a ways to go before I can be considered totally ‘green’ but just in the last couple of weeks our family has switched to natural cleaners and our food is definitely a lot better too.
So if you’re scared to go into a natural food store, don’t be. As far as I can tell, no one will bite you, and in fact I think I get a lot more smiles from people than I do at the regular stores. And now I know where to go if I ever decide to replace my deodorant with a pumice stone.
I’ve always been something of a professional worrier.
When I was little I was always worried about dying. All it would take was having a simple stomache and I would ask my parents, “Am I going to die?” “Am I going to be ok?” As I got older I graduated to more common worries that I suppose most people have like school, relationships, jobs, etc.
When my wife and I first got married, I actually wasn’t that worried about being a husband. It didn’t seem like rocket science to me. I knew it would take work, but I also knew that by doing the things that made us such a great couple before we were married (communication, prayer, etc.) that we would have an awesome marriage. And we have all these years.
But the thought of being a parent was definitely something that gave me cause for worry. I could wrap my head around being married, but being a parent? Now that was something I just couldn’t comprehend or even imagine that I’d be very good at.
When we found out my wife was pregnant, I was naturally thrilled…and also racked with worry! I had what I guess would be the typical first-time father worries, but also the nagging suspicion that somehow things wouldn’t work out for me like they do for most people.
In addition to the lifetime battle with worry, I’ve also had my share of esteem issues all these years. Where this comes from I haven’t a clue. I’ve always had an incredibly supportive family, teachers, friends, etc. and for the most part I’ve avoided any colossal failures throughout my life. But for some reason I always am convinced that I won’t be able to live the life that I imagine other people do.
This way of thinking has affected me throughout college, jobs, etc. I even remember being convinced that I would be one of the only people in the world who wouldn’t be able to figure out how to drive a car.
Anyway…back to the point I was trying to make. I was so worried and convinced that I would be a horrible parent or that something would be wrong with my child. So it was a great relief to me the day our son was born. I didn’t pass out in the delivery room. I was actually somewhat helpful and supportive in there too if I do say so myself. (This should have come as a surprise. During one of our pre-birth classes, we watched a video of a birth and when the baby’s head starting coming out, I leaned over to my wife and said, “What the heck is that?!”)
I was so relieved to see that my son had 10 fingers and 10 toes and that he didn’t seem to have any kind of birth defects. This doesn’t mean I still wasn’t a total wreck (I almost barfed/crapped my pants when it came time to leave the hospital) but I was gaining a little confidence.
In the weeks/months that followed, I still had my share of worries/anxieties about everything in life, but I felt like I was learning this Dad job pretty well. I was changing poopy diapers, getting him to eat, having a blast playing with him, etc.
For some reason, I did have this nagging suspicion that something wasn’t quite right, but everyone always told me that boys developed slower so I tried not to dwell on it too much. But of course, the good times didn’t last and we soon learned of our son’s autism diagnosis. While it seemed to me that everyone else I know gets to have this awesome parenting experience, my path suddenly would be much different.
So what’s the point of my rambling today? Well, if you’re a worrier/hypochondriac like me, then having to deal with autism really is not fun. Now on top of the autism, we’re dealing with all the toxic buildup my son has. It’s starting to really wear me down. In the past on a good day, I felt lucky to make it through without having a nervous breakdown. Now, this worrier gets to think about all things autism, toxins, getting toxins out of the house, getting my son to eat, etc.
This is probably the worst possible scenario I can imagine for the perpetual worrier/hypochondriac. Everywhere I look now I’m convinced something is poisoning my son. Even if we’re able to do the chelation effectively and get this crap out of his body, who knows how much junk is floating around out there that can still get in.
Fortunately for the world, I’m not a person with very destructive tendencies. When dealing with something like this, I can see where some people go off the deep end and do things to try to escape. I guess my only real vice for me so far has been a bit of eating stuff I probably shouldn’t. But unless I gain 200 pounds, I guess there could be worse things.
Sorry for writing a mini-novel today. You may be thinking that I shouldn’t ‘worry my pretty little head off.’ That might be sound advice, but unfortunately I’m bald.
I don’t know where the time has gone.
It seems like only yesterday that we were planning for your arrival.
I worried so much about my abilities to take care of you.
Could I change a diaper? Could I hold you correctly? Could I calm you when you were sad?
It’s as if I’ve blinked and now you’re a beautiful little boy.
Curlyhaired, dimpled cheeks, the bluest of blue eyes.
A two-and-a-half year old free spirit who has captured my heart.
I feel like I’ve failed you.
I told you I would protect you and keep you safe.
But even with all my best efforts, you were diagnosed with autism.
How did this happen?
Was it the vaccines?
I had a sinking feeling every time you were immunized that this could be a mistake.
I may not have done the best job of protecting you then, but I will give every last ounce I have to helping you heal and recover.
I certainly do not love you any less because of your autism, but because I love you so much, I will fight for you.
Therapy, biomedical treatments…whatever it takes.
The world may tell me to cope with autism, but I will instead hope for a better life for you.
I will not let autism define your life.
You will choose your own path in life.
Autism will not choose it for you.
Whatever job you desire, relationships you seek, will be your choice, not the choice of autism.
I have never loved anyone in this world the way I love you and because of that it is my duty and honor to do all I can for you.
From the moment you were born I knew our little family was destined for greatness together.
Let our journey to your recovery be our finest hour.
We will show the world that we will not let autism take over our lives.
Someday you won’t always be so little.
But you’ll always be my beautiful son.
Love,
Dad
Sorry for my lack of updates recently. I just returned from a business trip to Las Vegas and am finally getting around to writing a new post. My trip to Vegas went well….I didn’t get sick on any buffets and I only lost $7 in the slots, so I didn’t have to have anyone back home wire me some money.
I wasn’t sure what my son’s reaction would be upon my return home. At first he just kind of looked at me like “oh that guys’s back.” But a little while later he came over to where I was sitting and rested his head on my arm. Before long he was taking me by the hand to go off on little adventures with him throughout the house. I saw the musical “Jersey Boys” while in Vegas and loved it so much so that I picked up some Four Seasons cd’s from the library. Josiah absolutely loves the cd and every time a song would end, he’d look over at the cd player as if he was trying to will the next song on a little quicker.
He’s such a big fan of music, that right now we spend a lot of time with songs in the house whether it’s on cd, dvd, or our singing. We recently bought a recorder as we thought he’d get a kick out of that. He’ll now hand it to me and say ‘corder.’ I learned how to play it when I was like 7 or 8 years old and I can still remember a few tunes. I need to learn some more but for right now the sweet sounds of “Mary had a Little Lamb” and “Hot Cross Buns” can be heard in our house. I’ll soon be a regular Kenny G on the recorder (but without the frizzy hair). I’m hoping to learn some more of his favorites soon.
I guess Josiah is lucky that I’m something of a ‘triple threat.’ I can ’sing,’ I can ‘dance’ (I looked like one of Gladys Knight’s Pips while dancing to the 4 Seasons) and now I can play that recorder like it’s nobody’s business. I may not be performing in concert venues across the globe but as long as I have an audience of one amazing little guy who needs some songs, I’ll keep performing.
So a funny, fairly monumental thing happened yesterday. My son spoke a three-word sentence! For the most part now he’s still using one word ’sentences’ which we obviously still celebrate because we’re ecstatic that he knows as many words as he does. He’s added some two-word combinations recently like “Get Out,” “Shoes Off,” “Coat Off,” etc.
But yesterday at school Josiah uttered “Chicken All Gone!” They were getting ready to have lunch and I guess one second he saw his chicken nuggets on the table and the next second they were gone. He didn’t realize they had only taken them to heat them up so he became sad and kept saying “Chicken all gone!” I feel bad that he was sad about the nuggets being taken away but they were promptly returned when they were heated and it sounds like he devoured them.
When one of his therapists first told me he said this I just thought it was funny, but the more I keep hearing those words “Chicken All Gone!” running through my head, the more I realize what a big deal this was. Not only was it a three-word sentence but this came without any prompting from anyone else. He obviously was a bit perturbed about the missing nuggets and he intended to say something about it!
Who knew that three simple words would be such sweet music to my ears?!
At the risk of my blog becoming nothing but stories of peeing and pooping, here’s another bathroom entry.
Last night my son was playing in the living room and all of a sudden darted off to his room. We could hear him banging around in there and I knew he was looking for something. Perhaps a favorite toy or a blanket or something?
Nope, he came out with a book, stood in the middle of the room and proceeded to read the book while showing off his ‘pooping face’. I know anyone else who has a kid knows what that face looks like.
I guess that no matter what age you are, you need some good reading material while doing your business. It’s times like these that I’m reminded that our lives don’t have to revolve around autism 24/7 and there are simple things like enjoying a good book and a poop that can bring us all together.
Like father, like son I guess!
So today is World Autism Day. It’s been interesting to see all the news stories today. CNN is devoting a lot of coverage today to autism. It looks like you can view a lot of those stories right on the CNN website.
I used to think I was only noticing so many stories on autism because we are now dealing with it. Sort of like when you buy a new car…suddenly you notice lots of other people driving that same type of car where before you may have never noticed it.
But I have to think that people are noticing that there are so many reports on autism these days whether it’s stories about the vaccines or the rising numbers of those being diagnosed, etc.
I did in fact buy a “1in150″ shirt that I mentioned in a previous post and am wearing it today. It really is quite a nice conversation starter. People say “1 in 150 what?” And then I bombard them with more statistics and my thoughts on vaccines and all that is wrong with society. Just kidding of course. It does open up a nice dialogue though about how there are so many kids being diagnosed with autism and mine is one of them.
We enjoyed the 2nd part of our 4 part series for newly diagnosed families last night. There’s something comforting about being around other parents who are in similar situations. Not that I’m happy they have to go through it too, but at least we know we’re not alone. It amazes me how different each case of autism is. It’s not like other disorders and diseases where you pretty much know what you’re dealing with. One person may be dealing with a kid who can’t stop stimming on something while for another family the big issue is tantrums. It does help to get some hints from parents who have kids older than ours and who have lived to talk about it.
Wouldn’t it be nice if on World Autism Day next year we’re talking about being closer to finding a cure? Or that the numbers are now like 1 in 10,000? You never know.
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.
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.
