May 7, 2017: A Much Better Week

 

And so concludes a better week than last week—a week that wasn’t Too Much. In fact, the only dreadful part of it was taking Sam for a cervical spine X-ray, which was decidedly horrible for both of us.

The ENT who reviewed Sam’s hearing test emailed me and said they wanted to schedule an earwax removal and a follow-up hearing test. Naturally, I was not thrilled about this idea. Sam hates having earwax removed and has shown himself to be an unwilling participant for hearing tests at this stage, so I figured it was likely just going to reinforce his hatred of all things audiology.

And so, I turned to my favorite hivemind on such issues: the Rockin’ Moms. Turns out several of them have been through the same thing, and they all had the same answer: Ask for a sedated hearing test. At this age, our kids aren’t yet old enough to be reasoned with, and there’s no point in making a bad association worse by trying to force another hearing test.

I replied to the ENT and suggested this, and she readily agreed. Wahoo! While he’s under anesthesia, they can do a very complete hearing test, and they can also clean out the wax and replace the tubes in his ears if needed. (We’re pretty sure they’ve fallen out, but they’ll know for sure when they look when he’s sedated. He fights so badly that they can’t get a clear look when he’s not sedated.)

The only negative to this is that anesthesia is always slightly scary. And with kids with DS, they need a cervical spine X-ray before they’re intubated. There’s a small chance of atlantoaxial instability (basically, too much space between two of the cervical vertebrae), and if they have that, then intubation is dangerous (and pretty much just not done, as I understand it).

We tried to have this X-ray when he was three (because at that time, that was the recommendation from the AAP for all children with Down syndrome). It was a colossal failure. He refused to cooperate. (Are you sensing a pattern?) The AAP has since revised their guidelines and said the X-ray can be done ideally between three and five years of age, or before intubation or any activities that can jostle the neck (gymnastics, horseback riding, etc.).

It’s a simple X-ray: They just stand in one spot, and the X-ray is taken from two views. The machine doesn’t even touch them. It’s completely noninvasive. But Sam plants his feet and flat refuses to do anything where doctors are involved, so it was a nightmare.

Normally they do it standing up: Imagine getting a passport picture. They tell you to stand with your back to the wall and look straight ahead, and they take your picture. Same idea with the X-ray. But Sam refused—despite me holding up a bag of chips and saying, “You want chips? First take a picture, then chips!” Also despite me holding up the iPhone with Thomas playing so he could watch a show while having his “picture” taken.

So we had to try the table instead. Again noninvasive—he just lies on the table, and they take the X-ray from above. Also a no-go where Sam was concerned. He completely freaked out. So they gowned me up and had me hold him, but I couldn’t hold him alone—he was kicking, slapping, thrashing, and throwing his head all over the place. I literally didn’t have enough body parts to hold down two legs, two arms, a torso, and a head.

So an assistant gowned up and said, “I’ll hold his head; you hold his body.” We tried…we really tried. Then they said, “Why don’t you two switch?” I think they thought I wasn’t holding his body well enough. So we switched, and after about thirty seconds the assistant said, “Uh, no. It was better the other way. My GOD he is strong!”

So back I went to holding down his body. In the end, I had to literally lie on top of him (trying to keep enough weight on him to pin him down, but not so much as to crush the kid!), covering his arms, legs, torso, and chest with my body, while the assistant held his head. And he still thrashed so badly that they’re not sure they got a clear picture.

It was horrible. We were all three covered in sweat by the time they took the two shots they needed. The tech who was holding his head reiterated, “I can’t get over how STRONG he is! Oh my god!” and then announced that her workout for the day was done. I replied that I needed a drink. 😉

And Sam, who had been screaming bloody murder for at least fifteen minutes, stopped screaming the minute we said, “All done!”, wanted a hug, and gave a big, shuddering final sob before calming down. Oh, and then when the tech offered him a sticker, he took it, yelled “No!”, and threw it at her. She started laughing and said, “He is really something!” Indeed….

Seriously, it was terrible. I hate doing that. I feel like I’m absolutely torturing the poor kid. But he does need that neck X-ray—I’ve been wanting to have it done for a while because he loves trampolines and bouncy houses, and without a clear C-spine X-ray, we really can’t be certain that he should be doing those activities. Plus, as much as sedation isn’t a great idea, it’s better than putting him through yet another inconclusive nightmare of a hearing test. And hopefully they can peek at his tonsils and adenoids while he’s under anesthesia, too—when he was younger, his ENT said his tonsils are on the large side and may eventually need to come out. (This is super common in DS.)

Anyway, cross your fingers that they got a clear X-ray and we won’t have to do that again. If we do, Chris is all over that. I have done my time.

In the car after the X-ray, you can see what a sad, puffy-eyed fellow he looks like—and his hair is curling because he was sweating so much.

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Perhaps it’s fortunate that the same night as the darn X-ray, we had our first respite evening! (That is, respite that comes to our house, rather than a group event—we’ve done some of those before.) I was very nervous about having some random person I’ve never met come watch my kids, but I ended up really liking the woman who came. She was friendly with a great sense of humor, and Theo warmed up to her immediately. (No great surprise there—he’s a people person!) She has six kids of her own, ranging from 10 to 19, and she just came across as very calm, capable, and fun. (Sam was rather fried from the X-ray trauma, so he greeted her and then just stuck his nose in his iPad, which I was fine with—poor kid had a long day!)

We went to dinner at a restaurant close by, and it was horrible. Chris and I are not overly picky—in all of the times we’ve eaten out together over the past thirteen years, I can only remember three other times that the food just wasn’t good. Most of the time, we’re pretty easygoing. But the food Friday night was really bad. Overcooked, rubbery chicken for Chris, a flavorless appetizer to share, and some weird, tough meatloaf-stuffed prawns for me. (It said prawns stuffed with crab! I love crab and I love prawns, so it sounded right up my alley! But apparently they mixed crab with ground chicken and made a “meatloaf” out of it. You couldn’t even taste the crab!)

Gross meatloaf-y prawn thing:

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So anyway, we had a good time because we had a break, which was lovely. And we stopped for ice cream after the crappy meal, so that was tasty! But needless to say, we’ll cross that restaurant off our list for future outings.

When we got home, and Theo and the caregiver were sitting on the couch talking. She said, “We’re talking politics!” and then proceeded to tell us how much she liked talking to Theo. “I can totally just chill with him—he’s like a little MAN when he talks. We talked about politics most of the night!” Cracked me up. Good thing she and he share similar political views, or there could’ve been fireworks. (Sam still had his nose in the iPad, not surprisingly.)

Before she left, Theo said, “Can you come back? Like really soon? How about in a couple of weeks? Wait, give me your number, and I’ll FaceTime you to set it up!” She gamely gave him her number, and I warned her that he probably means it! When we put him to bed, he reiterated that he REALLY liked her and thought she ought to come back.

I’m not sure how often you get the same caregiver through the agency, but I would certainly request her again—I came home to content, happy kids, which set my mind at ease!

On Saturday, we split up for the morning. Chris and Theo went shopping (Chris needed a new suit for the gala—his current suit was the one he bought for his sister’s wedding, eleven years ago, and it doesn’t really fit well anymore), while Sam and I went to music therapy at Down Syndrome Connection. We hadn’t been to music therapy since Sam was a tiny infant, because we’re usually busy on Saturdays. But now that Sam is old enough to actually get something out of these classes, I’m trying to make it a point to get him to more of them. I think it’s really nice for him to have time with his peers with DS, since he’s around typically developing kids all day during the week. It makes for a nice mix! Plus, the other DS parents around here I know rave about the music therapy class.

Anyway, I see now what all the fuss is about. What a great class! Sam loved it! I actually liked it much better than the Music Together classes we did when Theo was young, which were a similar idea. This particular teacher just had a perfect amount of energy and kept things really active and moving for the kids, changing smoothly from one music activity to the next so that they kids could easily handle the transitions but didn’t get bored. Essential with this age group!

Sam loved the dancing, the Hokey Pokey, playing with drumsticks, the hello song where each kid got to go up and play the special drum, and especially the dancing with streamers. Bubbles were a big hit, too. He got really tired after about an hour, but it’s a 90-minute class right at his naptime, so I was pleased that he made it an hour. And he did so great at participating and had a big smile on his face—it was wonderful! We will definitely have to go back. I got to meet some new DS buddies I hadn’t met before and see some old friends, too, so that was fun!

Meanwhile, after going shopping, Chris and Theo went to a birthday party for one of Theo’s friends. Theo said he had a great time—there was a huge bouncy house, which is always a big hit with him.

And then Grandma Kathy and Papa came up to watch the boys overnight so Chris and I could go to Down Syndrome Connection’s Gala for Giving. Whee! I didn’t think we were going to get to go, but thankfully Grandma K and Papa were able to come watch the boys overnight. It was a nice break for us, although we’ve all been fighting allergies and so I wasn’t feeling exactly tiptop. But we had a good time. The gala was beautiful, as usual, with delicious dinner! Chris and I bid on and won a package of tickets to the Blackhawk Auto Museum, which Theo has been wanting to visit, so that’ll make for a fun day trip.

Check out whose picture was gracing the candy station!

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Aren’t the tables pretty?

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Our org’s mantra on the dance floor!

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Silent auction:

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This year the gala had a live performer (usually they have a DJ): James Durbin! Honestly, I didn’t know much about him, because I don’t watch American Idol. Apparently he was the fourth-place contestant on Season 10, and he’s now the lead singer for Quiet Riot, which was a big heavy metal band back when I was in high school. But my interest was piqued when I learned he has both Asperger’s and Tourette’s syndromes. (Several medical professionals have told me that if Asperger’s were still officially diagnosed, that’s probably what Theo would be diagnosed with. The DSM V no longer classifies Asperger’s as separate from autism, so Theo earned the autism diagnosis…but his traits are much like a person with Asperger’s.)

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Lately, Theo likes to hear about people with autism doing things that he thinks are cool, and I try to clue him in when he knows autistic people. I don’t ever want him to feel isolated—just like Sam has his “tribe” of DS buddies, I want Theo to feel like he’s not alone in the world of ASD. And Theo is a big fan of hard rock music, so I knew he’d think it was cool that a rock star has a similar type of autism to him.

Thus, being a shameless groupie sort, I decided to go ask James Durbin for a picture for Theo. And what a nice guy! I told him I have a son with Asperger’s who’s a big rock music fan, and he couldn’t have been nicer.

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My fan-dom was further cemented later, when he did his acoustic performance for the gala. First of all, it was a good performance—he’s a talented singer, and he did a fantastic job on a lot of my favorite rock songs from the ‘70s and ‘80s. (He’s only 28 years old, but he covered a ton of great classic rock songs.) But also, several of the older people with DS (teens and young adults) joined him on stage for pretty much his whole performance, and he just couldn’t have been more gracious and welcoming to them. He seemed like he really enjoyed being there and playing the event, which was just really cool. I love anyone who loves members of Sam’s tribe!

They were all singing Journey’s classic “Don’t Stop Believin’.” Seriously awesome!

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So anyway, he’s got a new fan in both Chris and me. We very much enjoyed his performance, and I loved meeting him!

I also decided to go talk to Mark Ibanez, a major sports anchor in the Bay Area for nearly 40 years. He’s been the emcee of the gala for the past several years, and I’ve never talked to him. (If you’re a sports fan in the Bay Area, he’s a pretty big name. I’m not a real sports fan, but you can imagine he generally has quite a few people talking to him at the gala, since there are many sports fans around!) He has a son with autism, which is part of why he does our gala—he loves the community we have for families touched by DS, since he knows well that the journey with a child with a disability can be lonely if you don’t have a community around you. He mentioned that last night, and I’ve heard him speak of it in past years, too.

So when I walked by him in the lobby and he said hello, I stopped and asked him about his son and mentioned that one of our two has autism as well. His son is just a couple of years older than Theo, and we had a great chat about how his son is doing and what life is like. His son is nonverbal, which adds a layer of challenge that we know well, given that Sam is also mostly nonverbal, and we had a good talk about how different life looks when communicating with your child is a challenge. We both laughed about how the problems that seem huge to some people seem little to us, given what we watch our kids struggle with. He was super nice and gave me a big hug—maybe I’ll have to become a sports fan. 😉

Another cool thing was the premiere of a video Wicked Wild Kyle made to raise awareness is his daughter Madi’s honor. Wicked Wild Kyle is actually Kyle Burnett, who was recently in our news because he stopped to help an elderly woman who was badly beaten in a mugging. (Click here for the story.) His family are also members of our local org. He recently decided to create an awareness rap video about Down syndrome, and Madi and several of our other members are in it. Even if you’re not a rap fan, I think it’s fun to watch! Look for an adorable little girl with glasses, wearing a pinkish shirt. That’s Sam’s buddy Avery—she is such a sweetie!

We stayed overnight at a hotel, since Grandma and Papa were staying at our house, and when we got back on Sunday, we took the boys to Theo’s school to participate in the garden workday. Sam lasted about 90 minutes, which was much better than last time! He had fun breaking up clods of topsoil with his hands, which was actually quite helpful, since we were spreading it in garden beds.

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After 90 minutes, Chris took Sam home so he could do some work in our own yard (mowing, weeding, mulching, painting, etc.), and Theo and I stayed for another 90 minutes. Theo mostly talked because his favorite audience was there (his beloved teacher), but that’s okay—at least he was outside and sort of working! And he did manage to pull out quite a few carrots from the garden beds, too. Meanwhile, I helped pull all the old plants out of the beds, spread the topsoil, spread manure, and then moved out to the front of the school, where we spread tons of mulch. All this to say, three hours of garden work, and I am sore! Feeling the fibromyalgia today, methinks. But hey, at least it was productive! The school garden is such a nice complement to the school that I enjoy going to help out with it and make sure it stays going. I’m really impressed by the few parents and faculty members who managed to pull everything together to put the garden in and maintain it—it really is impressive, and the least we can do is help out a couple of times a year. We got a big ol’ box of going-to-be-tossed veggies, too. Theo has in mind that he and Chris will make soup for dinner with them.

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In a final bit of good news, I managed to get Sam’s speech therapy set up at the same place he does occupational therapy. It’s far from our house, but so were ALL the options, and at least this one is out in the boondocks so I can drive there without fighting traffic. If I could get the appointments back to back, that would be awesome…but not the case yet. So, I’ll be driving out there Thursday late afternoons, and then again Friday mornings. Maybe I should just stay overnight?! Ha ha. But they’re forever having people switch schedules, so I may eventually be able to get the appointments together. And I really like the people who work there, so that’s a plus. I am still really sad about losing his current speech therapist, but sometimes you gotta do what you gotta do….

Anyway, without further ado: pictures!

How cute is this shirt?!

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Oooh, chilaquiles! I LOVE these! Tortilla chips mixed with black beans and tomatoes to make a delicious Mexican casserole thingy, and then topped with fresh avocado, radishes, cilantro, and queso fresco. So good!

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Naughty, naughty kitty:

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Coloring a card for teacher appreciation week:

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This was yummy, too! Fattoush salad with seasoned chickpeas, tomatoes, Persian cucumber, and soft-boiled egg:

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The eight-week trip for next summer is now plotted out! Do you see your location flagged? If so, expect to be seeing us! (We’ll be traveling counterclockwise, going through the middle of the country on the way out east, then driving north up into New England, then heading back across the northern parts of the U.S. Unfortunately, we had to give up Mackinac Island—that’ll have to be another trip…

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Naughty kitty part II:

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A homemade Italian veggie soup with shaved parmesan. It had homemade ciabatta croutons in the bottom of the bowl, soaking up the broth. Yummy!

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The shirt speaks the truth:

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This kid said “pot” and then actually DID something when I put him on the pot! So he earned himself a nice plate of bacon as a reward:

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We always get the most amazing views in hotels. HA!!! (Okay, the trees are pretty, but the top of the building isn’t particularly scenic.)

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