Feb 15, 2015: A Very Troublesome Week

It’s been quite a week around here…quite a week indeed. Pardon my flippant tone at times as I describe it, because I’ve chosen to laugh rather than cry about it!

Monday: Autism reassessment day. We woke the boys at the crack of dawn to spend 2 ½ hours in the car to go 30 miles. Oh, Bay Area traffic…how glad I am that I rarely have to deal with you! We got to the autism clinic in San Francisco with about 30 minutes to spare, and I promptly got yelled at by a janitor in the parking lot who wasn’t pleased with the spot I chose. Evidently he still needed to clean it. Fair enough, though I’m not sure that a tongue lashing was necessary—a simple request for me to move the car would’ve sufficed!

But the rest of the experience was…as good as such things can be. This assessment was actually through our medical group—Theo was already diagnosed through the school district three years ago. But the school district doesn’t provide the behavior therapy services that we thought might be useful at this stage (and that the developmental pediatrician and child psychiatrist both recommended), so we needed to have our medical group do a reassessment. Besides, we thought an assessment done at age 3 1/2 might not be entirely accurate, so now that he’s almost 7, it seemed wise to check in.

Not surprisingly, though, our medical group came back with a diagnosis of “autism spectrum disorder, level 1.” This is what used to be called “high-functioning autism,” and it’s the same thing the district felt Theo had. However, the DSM V (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition—the bible of the American Psychiatric Association, and what clinicians now use to diagnose things like autism) has done away with the term “high-functioning autism” and has also done away with classifications for Asperger’s and PDD-NOS (Pervasive Development Disorder—Not Otherwise Specified), both of which are subsets of high-functioning autism, so we are just left with “autism spectrum disorder, level 1.” Which is fine—the assessment team told me that literature on both high-functioning autism and Asperger’s would be useful to read, because that’s generally where Theo seems to fall.

So there’s no surprise here. I suppose, though, that I had secretly kind of hoped that he had fallen off the spectrum and was no longer considered autistic. But he is…and it’s fine. It doesn’t change who he is or who we are. It’s just a descriptor, nothing more.

We really liked the assessment team, and they really liked Theo. And I felt like they got a pretty decent picture of him, as far as one can tell in three hours. He was his fairly usual self—not totally autisticky, but not totally neurotypically behaving, either. Which is Theo most days—there are days where he’s off in Theo Land, and it’s painfully clear to me that autism does indeed describe him well…and then there are other days when he’s just on, and I wonder to myself whether he really is autistic, because he sure seems pretty darn typical. This particular day was an average day—neither on nor way off in space. So I felt like they got a pretty good picture of him.

They recommended two main things: ABA therapy and occupational therapy, as they still noticed a fair bit of fine-motor difficulty when he tried to perform some tasks. Fair enough. I set up the OT assessment that should lead to some more OT, as that will only cost us $20/week.

But the ABA therapy is another story. It is extremely expensive, even with the excellent insurance coverage we have. The other crappy event of the week was a five-figure tax bill, and there’s just no way we’ll be able to handle that and the out-of-pocket costs for ABA therapy. So ABA therapy is on hold indefinitely.

I’m not sure how I feel about that, to be honest. As I’ve mentioned on this blog before, I have some reservations about ABA therapy. But some people find it very helpful for kids on the spectrum, and Theo’s growing into some harder issues that are challenging for us to know how to parent…so we had sort of reached the point of saying, “Okay, we’ll give ABA a try.” And then the taxes…oh, the taxes! I suppose the bright side is that the last month or so has been better for Theo.  His behaviors definitely go in cycles, and we usually just wait out a cycle, and eventually he moves on to the next new development. But he had been stuck in a rough cycle for many, many months, which is why we finally decided to try ABA. In the past month or so, though, things have been better for him. So hopefully we’re on the upswing, since the ABA therapy just isn’t going to happen.

So as long as I’ve mentioned the taxes…yes, that was the big downer of the week. We thought we were actually doing pretty well this year. Taxes would be easy for just Chris’s salary, because he just works for a standard paycheck. However, my work is a mix of standard paychecks (with taxes already taken out) and freelance work (for which I must pay quarterly estimated taxes), which makes our taxes tricky. But this year, my main freelance client went belly-up late in the year, so the bulk of my income came from standard paychecks. And Chris and I both claim zero on our W-2’s, to ensure that the maximum withholding occurs, so I figured we were fine—I had paid a decent amount in estimated taxes for my freelance work, and we had claimed zero on all of our W-2’s.

Oh no…how wrong we were. How very, very wrong. You know how I worked my fanny off this past year? Apparently I worked enough to bump us into the next tax bracket…but by a mere $7,000. So that $7,000 put us in a high enough tax bracket that we lost our child credits and a bunch of other credits from our taxes. So we were sort of the “poor rich”—made enough to get bumped into a higher tax bracket, but not enough that we have extra money laying around with which to pay said taxes!

Also, apparently I should’ve had more taken out from my W-2 clients. I thought claiming zero was sufficient, but it’s not—apparently I should’ve also told them to withhold about 20% extra from my checks. I didn’t even know you could do that…or that I should be doing it.

Coming up with a five-figure sum when most of our savings recently went to thousands of dollars of car repairs and vet bills is fun enough, but I find myself really depressed about having work extremely hard this year, sacrificing time with my family…for nothing. For a giant tax bill. Frankly, it stinks. (Well, I should say we paid off a lot of debt this past year, so it really wasn’t for nothing. But it feels like nothing because our savings is depleted and we’re staring at a giant tax bill.)

So I find myself questioning my priorities: Should my priority be to work my tail off, even though it just means bumping us into a higher tax bracket and me losing time with the kids? Or should I say the heck with it, and toss the business I’ve worked to build for 16 years out the window, for the most part? Right now I’m leaning toward the latter. I think at this point, I’d rather live on a shoestring and have less work stress than kill myself working for very little other than a big tax bill.

I even looked around to see if we could find cheaper rent somewhere, but we can’t. Rents have risen fairly substantially in the three years since we moved here, and our landlord has kept our rent the same. Everything renting around us is now renting for more than we pay…which is pretty insane, because I’ll tell you that our rent isn’t anywhere close to cheap!

So…yeah. I’ve been depressed and frustrated about this for the latter part of the week. I think we’re going to go live in a yurt off the grid somewhere and grow our own food. Given my egg obsession, all we need is a good veggie garden and a bunch of chickens, and we’ll be set. 😉

I’ve also been feeling rather down about my weight for quite some time. I think I’ve stopped piling on weight since I changed medications, but I haven’t been able to take off any of it, despite getting a fair amount of exercise every day. So, when two of my jobs asked me for headshots (for a website and for a PowerPoint presentation) and I realized that there have been pretty much no pictures of just me taken since our wedding almost eight years ago, I decided that I’d get a haircut to perk me up and so Chris could take a decent picture of me for my employers. But we’ve been trying to stick to a fairly tight budget (and this was before the tax appointment—sheesh!), so my big splurge was the $8.95 haircut sale at Great Clips.

Learn from me people: Do not be sucked into the $8.95 sale at Great Clips! Not if you want to walk out with a shred of dignity, that is. Worst…haircut…ever! I told the guy that I wanted a bit of a change from my all-one-length ponytail hair, and he suggested some long, face-framing layers. Sounded good, so I settled back for my cut.

Wow. The thing about layers is, I think they’re supposed to blend nicely, not look like stair steps. Mine did not. They were so bad, in fact, that Chris, who is never anything but complimentary about my appearance, took one look and said, “Wow! I think I see what the guy was trying to do, but I don’t think he did it very well!” (Apparently he thought this was complimentary! Eeek!) As I fretted about my newly cut mullet, he helpfully added, “Hey, it’s perfect for your new job—business in the front, party in the back!” And then he played me “Achy, Breaky Heart,” in honor of the ultimate mullet-wearer: Billy Ray Cyrus. At that point I killed him. Okay, maybe not. But he’s lucky he survived. 😉

The next day, I went to the salon where I take the boys to get their hair cut, and I threw myself on their mercy and begged for help. The woman who was supposed to cut my hair took one look and said, “Um…I need to go get Jacob. He’s good at fixing problems.” So Jacob came over, messed with it a bit, and said very politely, “Was this a professional who did this cut?” Oh dear…yes. He was supposed to be, anyway! An hour later, and after Jacob had done his bit and then called in the big guns (the salon owner) to fix the giant chopped-off gap that Jacob himself couldn’t fix, I had a decent haircut. I now have long bangs, by the way, because that was the only way to fix the hack job. There was too big of a chunk taken out of one side to do anything else.

Oh, and as usual, my money-saving plan backfired, since I got to pay for the $8.95 haircut and the much higher salon price.

Lesson learned: Never trust the $8.95 haircut. Ever.

On the bright side, the entire week was not crap, despite autism and taxes and crappy haircuts. Sam had a great week at school—he is really doing terrific! Which is a good thing, because I got a lovely letter from the school district (yet another highlight of the week!) saying that they are now denying him all occupational therapy, physical therapy, and speech therapy services, since we refused their offer of special ed placement. Which is actually completely against the law—Chris found legal documentation that says they can’t refuse additional services just because the parents don’t agree to a specific part of the IEP. But our lawyer says this is standard practice and no surprise. The upshot is that Sam will now have to go three to five months without therapy services. I don’t really mind for OT and PT—his fine motor is fairly strong, and he gets an hour a week of PT through our medical group already—but I do mind for speech therapy. He’s just making such huge progress in speech, and missing up to five months of that seems really a step backwards in his progress. But there’s really nothing we can do about it. I had thought about paying for speech therapy out of pocket for five months, but then…oh, that’s right! Giant tax bills! So no… At least he’s around typically speaking children every day now, so that’s a type of “therapy” in itself, I suppose. There’s just no directed speech therapy at this point.

Theo and I actually got to share Valentine’s Day lunch with Sam and his preschool buddies on Friday, as Theo had the day off school and we arrived to pick up Sam a bit early. Sam, of course, stopped eating the minute I arrived, but he did lick some frosting off a cupcake, so that’s something. 😉 And Theo thoroughly enjoyed taking part in the tiny little party they had.

Another bright spot in the week was my medical outreach work for Down Syndrome Connection. It’s going great! We’ve sent materials to five new hospitals in the past week, and one of them let me know a couple of days ago that they’ve already made use of the materials with two new families this week. And I have appointments this coming week to drop off materials at four other hospitals. I’m starting to work on a training program for nurses, and I’m having a lot of fun with the work—it’s very nice to do something rewarding that I feel so strongly about!

And speaking of people with Down syndrome…we met two on Saturday! The weather has been glorious (though rain would be most welcome!), and Saturday was going to be 75 degrees and sunny, so we decided that after a crappy week, a beach trip was in order. We headed over to Half Moon Bay, a small beach community located a ways south of San Francisco. We stopped at a grocery store there to pick up sandwiches for lunch, and Chris motioned for me to look at the salad bar. There was a tiny girl there putting together a salad for her lunch, and she clearly had Down syndrome. I shouldn’t call her a “girl,” though, because when she and her mom caught sight of Sam and came over to introduce themselves and ask how old Sam was, I asked the young woman how old she was, and she replied that she’s 21 years old! People with DS often look younger than their years, but I was surprised my guess was so far off—I had her guessed for about 12 years old! She was physically tiny, though, which may be part of why I had her guessed so very young. But anyway, she’s 21, and she informed me that she doesn’t drink much—only on special occasions. At which point her mom laughed and said, “Well, she doesn’t drink much, that’s true—but she loves to order drinks!” We chatted a bit then and later, when they were leaving the store and we were still eating, and I asked if they were headed to the beach as well. Nope—turns out the girl (I wish I’d gotten her name!) is on a basketball team that practices in Half Moon Bay, so they come out almost every weekend during the season.

It was really a delightful experience. I meet so many babies and young kids with Down syndrome, and I’m immediately drawn to them. But I don’t often get to spend much time with adults, and I always enjoy meeting them. Honestly, you hear enough “oh sure, he’s cute now, but just wait until he’s an adult—it’s a whole other story,” and you start to really look forward to your own encounters with adults, so you can form your own opinions instead of just hearing bitterness spewed from some angry-with-life person. And I walked away from this meeting feeling great about Sam’s future. This young woman was so poised and friendly and well-spoken; she was a pleasure to talk to, and her relationship with her mother appeared to be very warm and positive. Her mom didn’t speak for her, make her salad for her, or baby her in any way—this was simply an adult daughter and mother who spent the morning at a basketball game and then stopped to have lunch together. It’s the kind of relationship I envision us all having with Sam when he’s older—he won’t be someone to be babied or coddled, he’ll be an adult, capable of much and a pleasure to have around.

Funny thing is, Sam had been relatively quiet in the store—just sort of minding his own business. But when this young lady and her mom walked up, he immediately yelled “Hi!!!!!” and reached his arms out to the young woman. And later, when they were chatting with us while we finished our sandwiches, Sam kept throwing his cup so that the woman would pick it up for him, and he was in his full flirting glory. He yelled an exuberant “Bye!!!!” after them as they left, too. I couldn’t help but wonder if Sam somehow recognized a fellow member of “the club.”

That’s Chris’s and my sort of code word for a potential sighting of someone else with DS: We’ll say softly to the other person, “Member of the club” or “Member of the tribe.” We’re referring, of course, to the T21 (or Trisomy 21—the type of DS Sam has) club—the best club we never knew we wanted to join. 🙂

It’s funny what a “club” it is. I’ve never met friendlier people than those who share a connection with someone with an extra chromosome. It’s pretty cool, actually—just sort of a “hey, we share something in common!” that breaks down normal social reserve. After we left the grocery store and went to the beach, it happened again. We were playing with the boys at the water’s edge—I was watching Theo, and Chris was following Sam as he trudged along down the shore. (Lucky for us, this time Sam was not a fan of the cold ocean water, so he stayed away from the water! He liked to go play on the wet sand, but he didn’t have any interest in running into the waves this time. He kept shaking his finger at the water and saying, “No, no, no!” and then signing “cold.”) I saw Chris pause for a moment and speak to a woman who had a little boy, and from the tilt of the boy’s head, I immediately thought, “Member of the tribe!” But the boy was quite a bit bigger than Sam, so I wondered if perhaps I was wrong.

Nope, not wrong. Not two minutes later, the woman picked up her son and walked over to us. “I just wanted to introduce myself,” she said with a smile. “This is my son, Nathan. He has Down syndrome. I wasn’t sure about your little guy so I didn’t say anything to your husband…but then I saw you were wearing a DS shirt, so I figured he must have it!” I laughed and said, “I wondered the same thing! I saw your little guy and wasn’t 100% sure, so I didn’t say anything!” Turns out Nathan and Sam are just a couple of months apart—Nathan’s just bigger than most pipsqueaks with DS. And what’s more, the woman’s older son is just a month younger than Theo! And they live in the same town where my mom and sister do—they had just driven down to the beach for a nice little day trip. Small world!

The beach was definitely the right decision for us yesterday. It really perked us up after a crummy week. The weather was gorgeous, and the boys played hard for 3 ½ hours before we packed it in for the day. The traffic was positively dreadful—apparently we weren’t the only ones with the beach idea!—but it was worth it for such a good day. It’s funny…the beach is the one place where I see Theo completely relax. He enjoys many things, but he’s usually in a state of high alert at all times, rather tense even when he is happy. But the beach is the one place where I consistently see him just totally relax and light up in a big, calm smile. It’s sensory paradise for him, I think, with the warm sun, cool breeze, crashing white noise of the waves, salty smell, etc. He played nonstop for 3 ½ hours, just splashing around in the waves at the water’s edge, building sand forts, pretending to spy sea creatures, etc. He definitely did not want to leave! It won’t surprise me if I see him live out at the beach someday…it’s definitely his idea of paradise. Sam loves it, too, but Sam is a happy, easygoing chap most places. For Theo, the beach seems to be the one place where he finds utter bliss. Good thing we live relatively close to the ocean, methinks…

Anyway, I’ve rambled enough. This coming week will be better…because it just has to be better. I’ll be running all over the place doing medical outreach work, but at least that’s fun and rewarding!

Hope you all have a lovely week—and for my readers out in the east, I hope you warm up soon! I leave you with a gallery of pictures…and also with this video of one of the other bright spots of the week—Theo riding a two-wheeled bike with pedals for the very first time!

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