July 7, 2013: Gluten-Fest 2013!

Hi all! My former blog site was having a lot of technical difficulties, so I decided to take the plunge and finally start up a new site on a more stable platform (or so I hope!). I’ll be porting all the content from the old site over to this one at some point, but at the moment you can still just go to www.snydereditorial.com to see any old posts you’re interested in. And from now on, come to foursmalls.com for your fill of Sam and Theo!

Okay, we’re a few days past the 4th of July, but happy 4th anyway! We had a fun 4th of July at our usual event–the neighborhood parade at Grandma and Papa’s house. Theo wasn’t overly excited by the parade, as he wasn’t fond of being out in the hot weather, but Sam seemed to really enjoy it. And Theo had his fun a bit later, when Papa and I took him in the swimming pool! We had hot dogs, potato salad, and corn for dinner, and just enjoyed a relaxing day. After we got home, Theo begged us to go see fireworks. We were on the fence about it, as it meant keeping the boys up way past their bedtime, but we ultimately decided to give it a try. And I’m glad we did, though Theo was kind of cranky about having to walk half a mile to the fireworks show. Oddly enough, Sam loved it! I’d had visions of having to pace back and forth with an overtired baby in my arms, because the show was set to start almost three hours past his bedtime. (My boys have early bedtimes–it preserves our sanity!) But Sam surprised me by being wide-awake and cheery. And once the fireworks started, he was rapt! He stared up at the sky, bounced up and down on his little bottom, and clapped happily when a particularly big one would explode. It was so cute! And Theo enjoyed the show too–just not so much the walk to/from the car. But it was fun overall, and I’m glad we went.

It was good to have a nice 4th of July because I have to say, the earlier part of the week stunk. Our beloved PT told me that she probably won’t be able to continue seeing Sam, as she’s been unable to get Kaiser to accept her as a vendor. (I found out yesterday that there is still a small glimmer of hope, but as of the early part of the week, it was looking quite dismal.) But the big blow was the news that my main client declared Chapter 11 restructuring. Why is this a problem? Let me share with you my frustration. I would keep this to myself except that said company has a public website all about the Chapter 11 filing, so it can’t be any secret. Still, I’ll refrain from mentioning their name.

So a couple of months ago, this client asked me to continue working on their books…but not invoice for them until July 1st. The reason was, they said, they wanted to keep all “plate costs” (which includes freelancer pay) for books in the same fiscal year as the book publishes, for accounting purposes. And their fiscal year begins July 1st.

Now, I could’ve said no–I’m entitled to be paid for work I’ve done, when I’ve done it. But I’m a nice person, and I’ve been working with this client for 14 years, so I decided to be agreeable about it. When you’re a freelancer, you always have to weigh the fact that if a client perceives you as “difficult” to work with, they simply won’t give you any more work–they have a whole stable of other freelancers to choose from who will happily take the work with whatever stipulations they put on it. So I didn’t like it, but I agreed that fine, I would not invoice until July 1st.

So we waited…and our bank account got pathetically slim. We had to leave a balance on our credit card for things like gas, food, and a $600 vet bill–which meant, of course, finance charges. Frustrating, but doable–I’d invoice on July 1st, be paid by July 15th or thereabouts, and we’d knock out that credit card bill.

So on July 1st, I sat down and paid what bills I could, and emailed my invoice for $3,600 worth of work that I’d done over the past couple of months. I looked at the sizable credit-card balance and sighed, but knew I’d be paying it off in a few weeks. On July 2nd, I got a call to tell me that earlier that day, the client had filed for Chapter 11. And every invoice submitted before that day that hadn’t been paid would be tied up indefinitely, until the proceedings are finalized. It would definitely be months before I get paid, and it could be years–but the client ASSURED me that they intend to pay all of their debts at some point.

To add insult to injury, the client is continuing operations as normal, and every invoice submitted after the filing on July 2nd will be paid as normal. It is only the ones paid on July 1st or the two weeks prior (since this client tends to pay in two-week turnaround cycles) that will be tied up. So if I had invoiced months before, when I did the work, I would’ve been long since paid. And if I hadn’t been so damned efficient in submitting my invoice on July 1st—the day they had told me I was allowed to invoice for the money that was owed to me—I also would’ve been paid just fine. But now, I’m basically screwed. Excuse the semi-coarse language, but let’s call a spade and spade: I am screwed.

Further, the company directed me to a website they have set up regarding the Chapter 11 filing, along with a hotline for if I have questions. On the website, the language about unpaid invoice is ambiguous and suggests that the vendors who have outstanding unpaid invoices may never receive their payment. I called the hotline and talked to someone and said, “Am I reading this correctly? Is there a possibility that I may never get paid the money that’s owed to me?” The woman confirmed my suspicions–although the company intends to make good on unpaid invoices (for what that’s worth), there is a possibility that we will never get paid.

And so I followed up with my tax accountant, who told me a different story–that in these situations, vendors often don’t see a penny of what they’re owed, and if they DO get some payment, it’s a small fraction of what they’re owed (maybe 10%, if I’m lucky). And I heard from a second accountant that this indeed correct–I likely won’t see a penny of that $3,600, and if I do, it will be a very small amount sometime way in the future.

I am furious, as you can imagine. I spent a lot of time working on those books—time that I could’ve spent with Chris and the boys! Or, time that I could’ve spent working on projects for another client who would actually pay me. And further, the client wants me (and all of the other freelancers) to continue working for them—they assure us that all invoices going forward will be paid. And I am very, very torn about what to do. On the one hand, this is by far my largest client–the bulk of my income comes from them. I’d say easily 75% of my income comes from them, in fact. And I’m not certain we can afford to give them up, even if we make more budget cuts–we operate pretty leanly as it is. On the other hand, this client has been going downhill for years–freelancers haven’t had a pay increase in 10 years, and in fact we’ve had pay cuts. Plus, they keep adding more and more tasks onto our job duties for the same pay we’ve been receiving for years—and we’re paid by the page, not hourly, so adding more duties on to what we already do effectively lowers our hourly rate. What used to be a good hourly rate is now not so stellar. And there’s also the issue of pride: This company just keeps doling out “abuse,” and I keep crawling back for more work, even though I’d like to leave. I’ve gained several new clients over the past year, but none gives me anywhere near enough work to give up the volume of work I get from this client.

Ugh, it’s very hard to know what to do. I am frustrated and angry and scared—$3,600 is a lot of money for us! And that lovely credit-card bill is staring me in the face, reminding me that it needs to be paid off. Sigh…

It has now been a few days since I wrote this (due to my technical problems with the blog), and Chris and I have pretty much decided that I will give up this client. Unfortunately, that also means cutting off Theo’s OT and several other expenses. The good news is that Theo has made HUGE progress in the past year, so he’s way ahead of where he was a year ago. The bad news is…well, he’s still got a ways to go. But we will try to work with him at home and hope for the best. Keeping an unreliable client just seems like too big of a gamble for us.

Anyway, enough on that topic. It infuriates me, but there’s not a lot I can do about it, other than file my claim with the courts for my unpaid invoices and hope for the best.

Let me take a moment to talk about one more unhappy topic before I switch back into cheery mode. You may notice this week that all of the photos on the blog now have a watermark with my copyright info on them. There exists a couple of lousy practices in the world of the special-needs community, and one hit somewhat close to home and inspired me to start watermarking my images. People have been stealing images of babies and kids with Down syndrome off the Internet and using them for their own purposes. Some set up fake charity websites using the images and try to get donations. But more often, the pictures are used to make special-needs kids the butt of cruel jokes. A fellow mom of two kids with Down syndrome had it happen last week–she had posted an innocent picture of her adorable little girl eating french fries, and someone stole it and made a cruel “retard” joke out of it. The mother found the joke while she was surfing the Internet–purely by accident. Can you imagine that? You’re just puttering around on the Internet, and suddenly you discover that your child has been used as the butt of a cruel joke that thousands of people have now seen? That breaks my heart, and I don’t want it to happen with Sam (or Theo, for that matter—although it seems to be an issue mostly with special-needs kids). So from now on, I’ll be watermarking my images. If you happen to want an unwatermarked copy of one of my pictures for whatever reason, just email me–I’d be happy to send it to you!

But now, back to happier topics than Chapter 11 and cruel jokes. How about the fact that I successfully ate gluten?! This is big news, people!! Big news!! A friend tipped me off on a product called GlutenEase that her gluten-intolerant friend takes when she wants to cheat and have a piece of pizza or a donut or something. And my naturopath had mentioned that such a product was available and that I might someday be able to eat small amounts of gluten occasionally, though I will probably never be able to resume a diet of which gluten is a regular part. So, I’ve been feeling pretty good lately–my gut has been slowly but steadily improving. And I went out and got this GlutenEase and tested it out Saturday—I took a capsule and then ate a cupcake. And oh my, did that cupcake taste good! And I didn’t get sick! I was mildly nauseated for a couple of hours, but I never got sick! In the past, even two bites of gluten has resulted in me being violently ill within a couple of hours. So this is amazing!!!

Based on the product reviews I read, this isn’t something you should do all the time or before a giant gluten binge. Rather, if you want to eat a little bit of gluten or you’re worried about cross-contamination, you take a capsule before the meal, and it helps you break down and digest the gluten. (The pill is a digestive enzyme.)

I’m so excited! I will definitely pick my battles and stay largely gluten-free, but it has been so hard to eat out, and I was wondering how I was going to manage when we’re on vacation next month (a vacation that I’m glad we already paid the deposit for, so we can’t back out–otherwise I’d be feeling very guilty for going, what with the stupid Chapter 11 filing). We eat most meals at home on vacation, but we do tend to pick up lunch if we’re out and about, and now I should be able to take a GlutenEase and have a few more lunch options available. Woohoo!

As long as we’re on the topic of pills, I’ll tell you our other pill success this week. Let me preface this by saying that we don’t typically take a lot of medications–poor Sam ends up on antibiotics all of the time for those darn ear infections, but other than that we’re pretty healthy. So we sound like pill-poppers this week, but we’re actually not. 😉 And this next decision was not one we took lightly–but we made it, and I’m now glad we did.

Theo has been having a lot of behavior issues over the last couple of months—enough that it was actually gently suggested to us that he might benefit from medication. We took that advice and tucked it away, but it’s not someplace we’re willing to go at this point—we both feel that medicating children is a last resort when you’re talking about drugs for ADHD, effects of autism, hyperactivity, etc. etc. etc.

But Theo’s behavior issues had also spread over into the nighttime. He used to be a great sleeper at night–in fact, all of his life he’s been a good night sleeper. (Naps were another story, but he was always great at night—until recently.) In the past couple of months, though, he’s started waking up at night. And at first it was fine—he’d go to the bathroom and go back to bed. In a way, we were glad, as he’s still in Pull-Ups at night because for a long time, he wouldn’t wake to pee. We figured maybe he was on the road to nighttime potty training.

But then he started getting up for other reasons, and he’d wake Chris up. Or me, if he couldn’t find Chris. (Chris usually sleeps in the room next to Theo’s, rather than in the master bedroom with me and Sam—he’d have a hard time doing his job if he was in with wakeful Sam, plus he and I have such different sleep schedules that sharing a bedroom is hard. Plus I’m an insomniac and he’s a restless sleeper–for a variety of reasons, we both sleep better if we each have our own space.) And Theo wouldn’t go back to sleep, or he’d wake up multiple times, and he’d get one of us up, too. Nothing we tried worked–positive reinforcement, incentives for staying in his room, punishment…you name it, we tried it. And it finally came to a head last week, when he was up and screaming for hours, multiple times, and Chris ended up getting a whopping 2.5 hours of sleep thanks to Theo, and was unable to go into work the next morning. (Due to a BART strike, he would’ve had to drive, and he didn’t feel as if he’d had enough sleep to make the long drive there and back safely. Luckily, it wasn’t a busy day for him, and he was able to work at home with no problem. But the point is, Theo’s night wakings cannot impact our lives in this way long-term.)

So we threw up our hands and decided to try melatonin. It’s a naturally occurring hormone, but it’s available in pill form. A lot of people use it for insomnia—I’ve tried it myself, though it didn’t do anything for me. And, more importantly, it’s fairly widely used among kids with autism (and also Down syndrome, actually), because they are known to have sleep issues.

So, we’re well aware that just because something is “all-natural,” that doesn’t necessarily mean it’s safe or effective. But we did our research, discovered that it’s been used for quite some time in kids with autism with no apparent problematic effects, and decided to give it a try.

And what do you know? Problem solved. Like, immediately. We give Theo a small dose 30 minutes before bedtime, and he goes to bed without fuss, sleeps all night, and wakes up in a considerably better mood the next morning. (Hmmm, maybe some of these behavior problems were tied to his lack of restful sleep over the past few months??) Chris and I get to sleep, too (well, as much as Sam lets me), and everyone is much happier.

So, melatonin it is. We’ll probably try to wean Theo off of it in a few weeks, after we’ve established a good sleep pattern again, but it’s wonderful to have found a solution for the moment! We were honestly tearing our hair out.

So, let’s see–what else did we do on the weekend? Saturday we started up soccer again, and then we headed to Davis to play at the park and go to the farmer’s market. Our heat wave finally broke, and it was a nice day for a drive. Noteworthy on Saturday (besides my gluten success!) was the fact that Sam pulled himself to a standing position for the first time! I was sitting on the grass with him at the park, just enjoying the shade and playing “airplane,” where I lie on my back, behind my knees, and lift him in the air so he’s balance on my lower legs and “flying” above me–he loves that game. And he wanted to do it over and over, and when I finally sat him on his bottom on the grass, he promptly grabbed my knees and pulled himself to standing, in position for more “airplane!” Five times in a row, in fact! Very exciting! He pulled himself to standing one more time at home later that night–to try to knock over a bunch of shampoo bottles he couldn’t reach while on his knees. Much like his brother, he loves to make a little mischief. 🙂

On Sunday, we headed over to the beach in Half Moon Bay–the same basic place we went for Father’s Day (except a different beach down the road just a bit). Given my gluten success the previous day, I decided to try it again. Last time we went to Half Moon Bay, we had exactly one choice for lunch–a fancy, expensive supermarket. It just so happens there’s a Taco Bell right next to this market, and Taco Bell is nothing if not cheap. (Plus, I have a great love of it, and I have sorely missed it over the past year, since everything on their menu has gluten.) So, we went to Taco Bell and feasted for a grand total of $10–about a third of the price we had to pay at the fancy market last time. Okay, okay, so it wasn’t very healthful…but it was good, and it was affordable. And that was good enough for me!

The beach was wonderful–mostly overcast with a few periods of sun. This was good because it kept us from getting charred. I had slathered a ton of sunblock on me and the boys, knowing that you can get burned even in overcast conditions, but still, the cloud cover kept it generally cooler and kept the sun from beating down on us. It was lovely! And the beach is where you find Theo at his best–Theo at the beach is cooperative, congenial, and happy as a clam. I think it’s a sensory paradise for him–loud, crashing waves, warm sand to roll around in, salty ocean smells… He just loves the beach. And so, we love the beach, too. I actually kind of hate sand (it’s dry and scratchy and gets everywhere), but I love the beach because it makes Theo so happy, and we have so much fun playing there. So I put up with the sand. 🙂

Before I sign off for the week, I have to share a thought that crossed my mind this week. Sometimes, my little baby with Down syndrome is actually more typical than his “typical” big brother! Now, technically, I suppose Theo isn’t considered “typical,” because a diagnosis of autism means he’s considered “special needs,” rather than typical. But we think of Theo as our typical child because (a) he only has 46 chromosomes (ha!), and (b) in so many ways, he is very typical. Sure, he has a diagnosis of high-functioning autism, among a couple of other things, but most people wouldn’t know that unless told–in so many ways, he’s just like any other five-year-old boy. So to us, he’s pretty typical.

That said, there are ways in which Sam, a decidedly non-typical baby due simply to his extra chromosome, is actually more typical than Theo. And I actually kind of love to see it, because I delight in every typical thing Sam does–it just does my heart good to see all of the oh-so-typical things he does!

Sam, more mobile by the day, has entered the delightfully typical phase of throwing things in the toilet. This is one Theo didn’t do–and I’m kind of glad he didn’t, because I didn’t end up fishing things out of the toilet all the time! But still, it’s also rather amusing that Sam is doing it. The minute I forget to close the door to the toilet stall in the master bathroom, he crawls in there and tries to toss something in. You’ll see evidence in this week’s album–as well as evidence of him dumping out the dog water, which is another very typical stage that Theo also went through. 🙂

We’ve also started leaving a little play tunnel out for the boys to play with. They use these tunnels frequently at things like Gymboree classes–I guess a lot of babies like to crawl through them. And Sam is no exception–he loves it! But looking back, I remember Theo at roughly this development stage, and he had no interest at all in anything like that. He likes them okay now, but still not all that much–one of the birthday parties he went to last weekend was at a place with tons of climbing tunnels and tubes, and all of the kids loved it…but not Theo. He was far more interested in other things. Just not his cup of tea, I guess.

And within the past week or two, Sam was very fussy one night, and Chris couldn’t get him to calm down. (He had an ear infection, which was a large part of the problem.) But the minute I picked Sam up, he calmed right down. Chris felt kind of bad that he hadn’t been able to calm Sam, and he said sadly, “He doesn’t want anything to do with me–he only wants you.” I felt bad for Chris but reminded him that he should actually probably be happy about that, because it’s actually very typical for babies to be really attached to their moms at some point. Theo was never like that, so it’s all new to Chris and me–Theo was always a very equal-opportunity kid. As long as Chris or I were around, it didn’t matter which one–he seemed equally comfortable with both of us. Which, really, was wonderful–it was great that he felt comforted by either one of us. But I do think Sam is actually more typical in that regard–being very attached to mama at certain points in his life.

Also, Sam is now working on “nesting” objects in other objects–he likes to take a small object and put it in a cup, for example. That’s a visual-spatial task that Theo never really did, even though it’s very common for babies at a certain developmental stage. It makes sense now–Theo struggles with puzzles and other visual-spatial tasks, so I’m sure that type of activity wasn’t easy for him as a baby, either. And at the time, I thought nothing of it. But now, seeing Sam engaging in that activity reminds me that Theo didn’t…and I think in this case, Sam is actually the more typical of the two.

And finally, Sam has reached mischief-maker stage, which means there are times when I’m having to tell him no. And when I do, he sticks out his lip, looks devastated, and bawls–very typical. Theo, on the other hand, never really picked up on facial expressions, nonverbal cues, and tone at this age. I remember Chris and I having to really exaggerate our emotions when we were upset with him about something, just to try to get the idea across. And he would just look rather bewildered. Now, I look back and realize that probably was related to autism–he honestly probably couldn’t understand the emotions we were trying to get across. Now that his language is much more advanced, we can explain to him that we’re upset, and he gets it. But at Sam’s age, when so much is tone and nonverbal cues, he just didn’t really get it. And so that’s yet another way that Sam is far more typical–like most babies, he gets it when you’re not happy about something, and he reacts accordingly. (This actually gives me a big sigh of relief–Sam is at a fairly high risk for having autism as well, due to being a boy, having Down syndrome, and having a sibling with autism. But Sam has some signs that are decidedly NOT autistic that give me hope that Down syndrome will be his only diagnosis. Fingers crossed!)

Anyway, I share this not to point out Theo as being atypical, but rather to point out how neat it is to see Sam developing very, very typically in some areas! When he was born and we were told he had Down syndrome, we really didn’t know what to expect. But as he grows and we grow with him, it’s neat to learn that in so many ways, he’s just like any other little boy. Okay, an exceptionally cute one. 😉

Anyway, time for me to wrap up for the week. Happy July, all!

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