Apr 30, 2017: A Week of Just Too Much

Some weeks are just too much. This was a week of too much. Which isn’t to say it was all bad—in fact, it had some very nice parts. But overall, I would say this week was Just Too Much.

Part of that was my own fault. Sam had his five-year checkup not long ago, and his pediatrician suggested we do a routine hearing test and vision test. And I requested a speech evaluation, because our district-funded speech therapy will end next month. (Which was another Too Much part of the week—I had to let our beloved speech therapist know that May will be our last month with her, and I felt terrible! Even though she knows full well that we love her and that this has nothing to do with her work with Sam and she was super cool about it, I still felt bad. I hate losing a wonderful member of Sam’s team!)

Anyway, for some reason I thought, “Why not get as many pain-in-the-rear appointments out of the way in one week as possible? I’ve already got Theo’s IEP meeting the last week of April, so we’ll do Sam’s speech evaluation and hearing check that week, too!”

Bad idea. Even though the speech evaluation and the IEP weren’t bad, both of those have a lot of emotion attached—and the hearing test just sucked. Which meant the week ended up being Just Too Much. Lesson learned: spread out these “fun” appointments a little more next time.

Sam bombed the speech evaluation, but that’s really okay—it means he qualified for speech therapy with no problem. I wrote a little more about that in this blog post, if you didn’t catch it earlier this week.

And Theo’s IEP was good overall. The team is all on the same page about how best to support him in school, so there was no argument over anything. He still needs relatively few supports, though we did tweak things a bit. He “graduated” from occupational therapy (after five years of it!!), because he now can write legibly when he really works at it. Plus, at this point they shift into much more work on the computer, so the need to practice handwriting isn’t as great. (I know some feel penmanship is an essential skill, but after watching my kid struggle with it for years, I don’t fall into that camp. He can sign his name and he can print legibly when he tries. We’re good with that.) And we added in a couple of supports like the ability to take a break during tests and the chance to test in a quiet location. (He’s having an increasingly hard time filtering out classroom noise—which is kind of funny since he makes a lot of noise! But regardless, he keeps bringing it up as troubling for him, so now he will be allowed to take tests in a quiet room if needed.)

But it’s all still fairly cut-and-dried, and it was all very amicable. Still, though, it’s never exactly fun to hear about areas where your child is struggling, so I wouldn’t exactly call the IEP meeting something I look forward to….

And then Sam’s hearing test: what a nightmare. What…a…nightmare.

While Theo and I both have sensory-processing disorder, Sam does not (as far as I know). However, he does have one area that he’s very sensitive about: his head. He does not like wearing anything on his head or face. No hats. He hates having his hair brushed. He screams bloody murder when you wash his face or hair. And he will not wear headphones of any sort—he recently proved on the plane that he would rather watch a muted iPad with no sound than wear soft, child-sized headphones so he could listen to the sound.

So I can’t say I felt overly optimistic about this hearing test. The last time he had one he was about two, and it was a nightmare. They have never been able to get an accurate reading of his hearing because he fights it so badly. I can’t say as I blame him: When he was a toddler and had repeated ear infections, they had to look in his ears probably a dozen times before they agreed to put tubes in—and he hated it.

So after that disastrous attempt at a hearing test when he was two, I decided not to torture him again unless I had some suspicion that he was having trouble hearing. At least not for a few years—I wanted to give him time to forget that he hates the audiologist.

Sometimes I do torture my kids—when I think it’s in their best interests. Sam isn’t a fan of swim lessons, but I make him do them because we live in California, where there are pools and lakes and rivers everywhere (not to mention a big ol’ ocean), and to me, knowing how to swim is a life-and-death matter. I also torture him with yearly blood draws (which he hates) because I know his thyroid levels must be monitored to manage his hypothyroidism. I also tortured him with an IV when he was seriously dehydrated last year and needed IV fluids to survive.

So when it’s a matter of health and safety, I torture him. I make him put up with something he hates, and I try to make it as painless as possible—but I don’t let him get out of it.

Hearing seemed, at this point, another matter. I know he can hear at least passably, because he responds to our comments and questions immediately—we rarely ever have to repeat ourselves with him. If he couldn’t hear, he wouldn’t respond accurately, right? And frankly, even if he has some mild hearing loss, I’m pretty sure he would not, at this point, keep a hearing aid in. Kid hates anything touching his ears, as I mentioned.

So we went to the damn audiologist, and by the end of the appointment, I wanted to punch her in the face. I didn’t—but Sam kicked her in the neck, and I actually kinda sorta cheered internally, because I really, really did not like her. (Clearly Sam agreed.)

Why did I detest her? Well, she kept making passive-aggressive comments suggesting that I had totally dropped the ball on his hearing tests. “He should’ve been in here every six months!” “You know, you could’ve brought him in periodically just to drop by and say hi and get comfortable with us!” (Um, good advice, but no one ever told me that!) “You should be playing games where you touch his ears!” (Also good advice, but this is the first I’m hearing of it.) And my personal favorite: When I said calmly and honestly at the end of the disastrous appointment, “I probably would have been more proactive, but I know he can hear us at least somewhat, and to be honest, I really don’t think he’d keep a hearing aid in,” she announced that my negative attitude was rubbing off on him.

Okay, lady. I’m well aware that a negative attitude can rub off on kids, but you don’t know me at all. If you did, you’d know that one comment about me doubting he’d wear a hearing aid does not indicate that I’ve been wholly negative about this.

If she’d been at the doctor with us any time he’s had to have his ears looked at in the past three years, she would’ve seen just how much I try to calm him, sing to him, reassure him that it’s not scary, and it’s just a light to peek at his ears, etc. She would also know, if she knew me at all, that I had spent the several days prior to the appointment cheerfully saying, “Sam! We’re going to go get your hearing checked on Friday! It’s going to be fun! You’ll get to play games and hear some sounds! And afterward, we’ll go eat pizza!”

But no. Apparently, me realistically explaining why I hadn’t been overly proactive on audiology visits was enough to convince her that I’m negative about it and that’s why he was flipping out. Sigh…and so I wanted to punch her.

I’m sure she’s a nice enough person, but let’s just say we will not be visiting her for his follow-up appointment in three to six months. And I’ll be sure to be Mary Freaking Sunshine for whichever audiologist we do see.

By the way, Sam did super during the behavioral test—the one where they play sounds in different parts of the room, and they watch to see whether he looks in the direction of his sound. He was totally cooperative and did exactly as they asked—even though they had spent the previous twenty minutes having me physically restrain him while they tried to jam an earplug in his ear to check his middle-ear hearing. (They started trying to do it with his permission, but he freaked. So then they asked me to hold him while they did it. And then I practically had to put him in a straightjacket hold—and he still refused to have that darn thing in his ear. It’s just a small, soft earplug, but he hates it, and he’s fiercely strong when he wants to be.)

So, bottom line: he appears to have borderline mild hearing loss—which was the same thing they said when he was two. But they can’t check the middle-ear hearing—where hearing loss often occurs in kids with DS—because he won’t let them put the earplug in.

So we shall play ear games for the next three to six months and then try again—with a different audiologist.

And can I just say that I can’t wait for the eye exam? I’m pretty sure they’re going to have to dilate his eyes, and he is not going to be a fan. Call me negative if you’d like—I call it realism. Most of his buddies with DS have not liked having their eyes dilated, and I remember hating it myself, so I shan’t blame him if he hates it. But he’s going to have to have that one done, because I have a feeling he may need glasses. (Don’t ask me how we’ll get him to keep those on, but I have heard that some kids are willing to wear them once they realize they can actually see with them on! And he’s not quite as finicky about that part of his face as he is about his ears, so there might be hope….)

The eye exam is on Chris’s birthday. Chris pointed out that for his birthday last year, we took Theo for an autism study. So clearly we do All the Fun Things on his birthday!

In other health news, I won Mother of the Year for sending Sam to school for nearly a week with a contagious rash. He’s a very rashy kid—gets rashes all the time, and they are usually nothing and clear up within a day or two. So we assumed this was the usual random rash that would clear. Ah, we were wrong! Turns out it’s impetigo! So nothing serious, but it is contagious. Ooops. I’d feel worse about that, except he probably got it from preschool anyway. He’s now on antibiotic cream for it—which he hates because he hates us touching his face. He screams bloody murder every morning and every night when we put it on, even though it takes all of fifteen seconds. Fun times…

But in happy medical news, Theo’s teeth cleaning went well—no cavities! Sam has to have a dental exam before entering kindergarten, so I made that appointment. Another one that will be fun—he has always flat refused to open his mouth for any dentist. I plan to bribe the dentist to sign the “I checked his teeth” form that the school needs. 😉 (If you’re thinking I should worry about this, I’ll tell you that he’s actually quite good about letting us brush his teeth twice a day, so I assume his teeth are probably A-OK. Someday, he’ll decide of his own accord that the dentist isn’t actually the devil in a white coat.)

And the last bit of crud during the week was that we were turned down for childcare for Sam through the Regional Center. This is so disheartening. It wouldn’t be disheartening if they just didn’t provide childcare at all—that I would understand. But the fact that they provide it if you work outside the home but will not provide it if you work at home is just flat disheartening. They told me outright, “If you worked in an office, we’d give you as much childcare as you need. Can’t you go work in an office somewhere? If you work out of your home, we can’t give you anything.”

I explained how silly this is: Yes, I could work in an office, but it would add at least two hours of commute time onto my day, every day. Which would mean at least ten extra hours of childcare needed a week! Doesn’t it make more sense to continue working at home and use less childcare, thus saving the state money? Apparently not.

To me, this is a very silly system. If you’re going to offer childcare, it shouldn’t matter where a person works! In this day and age, so many people telecommute—I’m definitely not out of the ordinary in that! And to me, logic dictates that the less childcare you can use, the better—so it’s actually a plus that I work at home and thus would need less! But I guess they don’t see it that way.

I do understand that it’s probably some sort of effort to keep people from abusing it: You could have someone say they work at home and actually just sit around and eat bon bons and watch soap operas all day. But I have an incredible paper trail (including tax documents) showing that when I work at home, I’m actually working—and still, it wasn’t enough. Sigh…

I have to say, on a personal level, this makes me feel totally devalued—as if the work that I have put my heart and soul into for sixteen years isn’t actually work. But that’s a personal issue I just need to work out. On a logistical level, this is all just a pain in the rear.

The solution? I’ll cut back my work hours considerably (which somewhat kills me, given all of the effort I’ve put into growing my business), we’ll go back to a system of juggling childcare between the two of us, and I’ll embark on the long, hideous paperwork process of applying for IHSS, so I can essentially get paid for being unable to work much. I don’t like that solution: I would like to be able to continue being a working, taxpaying citizen, helping to support my family. But that doesn’t seem to be doable, so we’ll do this less-palatable solution.

It’s a pain, though. Let me give you a glimpse into the silly paperwork side of all of this! In order to apply for IHSS, we must first secure a Medi-Cal Waiver for Sam. But to apply for the Medi-Cal Waiver, we must first have respite care for the boys. So next week, I have some random person I’ve never met coming to my house to babysit the boys for two hours so that they can bill the Regional Center for respite…and I can then begin the paperwork to apply for the Medi-Cal Waiver. I do not like the idea of some person I’ve never met watching the boys, but I have to do it at least once to even be able to apply for the darn waiver. So silly…so very silly. (I will say, these respite providers have gone through background checks, fingerprinting, TB tests, etc. So they’re probably just fine. But I don’t like leaving my kids with someone I don’t know. Needless to say, we’ll be going to dinner five minutes away, and we’ll undoubtedly come home early to ease my mind!)

If the IHSS doesn’t work out, we can borrow from Chris’s retirement for a year or two and pay it back gradually. That’s an even less desirable solution, but if a rock becomes a hard place….

And last but not least, we could always use the money we have saved for next year’s road trip—and not go on vacation. That is my least favorite solution of all, so hopefully we won’t do that. But it’s a possibility, if we end up having to.

Point being: This will not break us. We aren’t in any danger of losing our house. We will certainly still be able to feed and clothe our children. We have options, thank goodness—I am well aware of just how fortunate we are in that regard! I can only imagine how rough this might be on some families, and thankfully we have some options. But what a pain in the rear…. And to think, this would all be moot if I just worked in an office instead of at home.

Anyway, the weekend was a nice break from the week. On Saturday I went to a baby shower for our friend Roxann, who is expecting a baby girl! And then when I got home, we wandered over to the Art & Wine Festival for a bit. Theo saw lots of school friends and his beloved teacher, so he was happy—and Sam was happy just to people-watch with us.

Three out of the four of us (I was the only one spared!) had horrible allergies on Saturday, so on Sunday we escaped to the San Francisco Zoo. It’s right across the street from the ocean, so allergies generally aren’t bad there. And indeed, Chris stopped sneezing when we were there—after sneezing well over fifty times the day before. Poor guy was miserable! Theo’s eyes swelled up again, too, and even Sam had a runny nose. Allergies are bad right now!

It was a beautiful day at the zoo, and we all enjoyed seeing the animals! A nice end to a week that was…well, just too much.

Theo got a haircut last week and asked them to style it as a mohawk:

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Sam “helping” me spread mulch last weekend:

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I typically don’t post potty pix, but this one is just cute—and shows nothing—so I figure it’s okay. Doesn’t he look adorable sitting on his “throne”? (And why don’t we all sit cross-legged on the potty??) Now if only he’d use it for its intended purpose….

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Marking out the road trip! My friend who lives in Iowa was appalled to see that the cat looks like she’s crapping on Iowa!

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Oooh, this was yummy! Gnocchi on a homemade cream sauce. I made my first roux for that sauce! Also, roasted broccolini:

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Cutest thing ever: baby geese out for a walk with Mom and Dad! They even almost stayed in the crosswalk while crossing the street!

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Oooh, this was good, too—if you like mushrooms! It was bibimbap (a Korean dish) with roasted mushrooms, sautéed spinach, pickled cucumbers, and fried eggs:

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This one was yummy, too! Quinoa with roasted sweet potatoes, soy-glazed cucumbers and edamame, and fried egg:

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Another good one! Lots of good stuff this week. Farro salad with avocado, pickled rhubarb, ginger-roasted walnuts, and sautéed celery:

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Chris got to go to a Giants game and watch from his company’s suite at AT&T Park! He had a lot of fun. I stayed home and watched La La Land after the boys went to bed—I’m not sure I see what all the hype was about, though it was an okay movie. On the level of good stuff, though: If you have Netflix and haven’t yet watched The Crown, go do it right now! What a terrific series! We flew through it and are now disappointed to have to wait until November for more!

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Me and Roxann at her baby shower!

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Congressman Eric Swalwell is my new BFF. Not only was he awesome when we visited in Washington, but I got an email from his staffer this week that Congressman Swalwell has agreed to co-sponsor the three ABLE support bills in the House! That was one of our “asks” during the Buddy Walk on Washington, so I was thrilled that he ended up doing it! But anyway, he also sent us this signed picture in the mail—his staffer took it when we were in the office. I showed it to Theo, who said, “Can this be in my room? Can I keep it??” He was very excited, as Congressman Swalwell was one of his favorites!

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Very tasty again—a wonton noodle salad with pickled carrots and cabbage, and sautéed cashews:

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Zoo pics from today! A baby prairie dog!

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This prairie dog liked Theo:

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Sam, lookin’ tall!

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Slide!

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Sam insisted that Theo had to pull him in the wagon—he wouldn’t let Chris or I do it!

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Note Sam’s “excited” pose!

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Cool antelope-y things:

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Hello, giraffe:

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Sam was not feeling this selfie (and, full disclosure: it was taken while he sat on the potty, so he was not amused). But I post it to show my skin! A couple of months ago, I was feeling really depressed (another story for another day), and I treated myself to Rodan + Fields skincare. A good friend recently started selling it, and I have been noticing that my skin is looking decidedly older. While I’m not typically vain, I can’t say I enjoyed seeing my skin age. So on my very sad day, I messaged my friend and said, “Hook me up with a trial of Rodan + Fields. I need a pick-me-up.” And I look at this picture now and think, “Hey! I think that stuff might actually be working! My skin looks much healthier than it did two months ago!”

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Last but not least, two cute speech therapy videos. Sam is doing so good on his speech lately—we are so excited!

 

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