Mar 26, 2017: Gearing Up for the Big Trip!

Hello, all! Happy belated World Down Syndrome Day! It was actually Tuesday, but since I don’t blog on Tuesdays…

I love WDSD. I really, really do. It’s one of those holidays where there’s no pressure, just happiness. People all around the world celebrating those who sport that extra twenty-first chromosome: It’s awesome! Instead of my Facebook feed being filled with crabbiness, it was filled with pictures and stories of people with Down syndrome. It made my heart happy! (At the same time, I know mothers who have lost their children with DS over the past year, and for them my heart ached. Most of them chose to stay off Facebook for the day, and I surely can’t blame them. I think if my heart had been broken that way, I would’ve done the same.)

I started out my WDSD by giving a presentation at Pediatric Grand Rounds at Children’s Hospital of Oakland. There were about forty pediatricians in attendance, so I was pretty nervous, but it went very well. And it was a wonderful opportunity to spread awareness about the supports available for people with Down syndrome in our community, and to share with pediatricians about the diagnosis experience from a parent’s perspective. So I was glad to do it—although nervous, as I always am!

That was the first of two presentations I did this week—the second one was at a monthly meeting of the Pediatric Department at another local hospital. Again about forty people in attendance, but this time I only have five minutes to speak, so I had to compress my thirty-minute presentation into a five-minute “best of,” so to speak. All went well, though, and I was back home and in comfy work-at-home clothes by 9am!

Our whole reason for celebrating WDSD—Sam—was home sick for three days this week, so that wasn’t so much fun for him. After recovering from his second bout of the stomach virus, he came down with a respiratory virus. At first I thought it was allergies, because it started with the same swollen red eyes that Theo gets from hay fever (which he’s suffering from right now). Both of my kids looked like I’d punched them in the face!

Handsome boy with swollen red eyes:

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Close-up:

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But as it turns out, while Theo’s is legitimately hay fever/seasonal allergies, Sam’s was a respiratory virus. I took him to the doctor on Wednesday, and she confirmed it. I normally wouldn’t take him in for a respiratory issue that was really no big deal, except for two things: (1) We were flying out to Washington in a week; and (2) I was behind on his five-year well-child check anyway and needed to get the doctor to sign a form for kindergarten. I figured I might as well kill two (or three!) birds with one stone and get it all taken care of.

This was the first time we had actually seen the boys’ new pediatrician (other than one time years ago when I took Sam in for an ear infection or something). Their previous pediatrician retired and we switched over to this one, who comes highly recommended in the local disability community. (Rumor on the streets is that she has a disabled child, too, though I can’t say for sure whether that’s true.) I really liked her! She was very thorough and didn’t rush us, even though we had come in for like three things. She read over Sam’s medical history while we were there and gave me a stricken look when she got to the info about his hospital stay last year. “What is this? Hypercapnia?? That’s really bad!! What happened?” I explained the issue he’d had with stomach virus and dehydration, and she agreed that in the future, it’s a good idea to be safe rather than sorry and get him started on an anti-vomiting drug right away when he gets hit with the virus. It gives me some peace of mind to know his whole medical team is now on the same page for that one….

Anyway, Sam cooperated with exactly one of the six requests for his well-child check, but she signed off on it anyway. He allowed himself to be weighed (34 lbs!) but not really to be measured (38 inches was the closest guess we could get). For reference, a typically developing five-year-old is usually 40–45 inches tall and weighs between 30 and 45 pounds. So this is rather exciting news—after spending his first four years not even coming anywhere near the typical charts for growth, Sam is now not so far off!! He’s still a few inches shorter than a typical five-year-old and weighs on the low end, but he’s getting much closer! Not that it really matters—people with DS tend to be small in stature (and often battle weight issues), so we don’t have any real expectations, but it’s nice to know that he won’t be ridiculously tiny next to his kindergarten peers. I suspect he’ll be the smallest one in class, but not that much tinier than the others.

He flat refused to have his blood pressure taken, have his hearing checked, have his eyes checked, or one other thing that I’m forgetting, but no harm done. He has an eye appointment scheduled for May anyway, and he has a hearing test scheduled for next month. I don’t really have any concerns about his hearing at this point, but hearing issues are very common in DS, so it’s pretty routine to check.

I will say, too, that although he was decidedly uncooperative at the doctor’s office, he charmed the pants off of everyone. He was super smiley with several people.

Cheery kid with a virus in the doctor’s office!

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He has this new thing where he walks up to certain people and puts a hand calmly on them and looks intently at them until they turn to look to see who’s touching them. When they lock eyes with them, he gives them a big smile and then walks away. It’s incredibly endearing—it’s hard to explain in words, but the way he does it kind of feels like he’s saying, “Hey, you look like you need to see a warm smile today. Let me just give you a little smile, and then I’ll go on my way.” Funny thing is, he doesn’t do it to everyone—in a room of ten people, he might do it to one. It’s almost like he zones in on one person that he thinks needs extra attention, and he gives it to them.

I suppose at some point he might zero in on someone who doesn’t want his attention, but so far it seems to only put a smile on people’s faces, which is nice to see!

In other Sam news, he got his first LICE BATH on Friday! No, he doesn’t have lice. But a child in his class apparently did, and I decided to adopt a “better safe than sorry” approach, because I do not have time to deal with a whole-house lice infestation. So I gave him a lice treatment just in case he had any of the little buggers on his scalp, waiting to multiply. Gross.

Sam also shared the virus love by giving his respiratory virus to his brother. I’m not too worried about that, though—Theo typically bounces back very quickly, and all he’s had is a minor cough. I’m just hoping all remnants of cough are gone by next weekend, as we’re supposed to have a play date with an immuno-compromised friend in Washington DC, and obviously that can’t happen if any of us is at all still sick.

Speaking of DC, we’re pretty excited about our trip! It’s jam-packed full of events already. One day we have a play date with a bunch of Sam’s Rockin’ friends—and their siblings, which means Theo will have kids to play with his age, too. Monday night I have a Rockin’ Moms Night Out—walking distance from the hotel where a bunch of us are staying, thank goodness. Not that I’ll need it to be walking distance or anything. 😉 Chris will take the boys to the dinner and then relax at the hotel with them.

Tuesday I have advocacy training all day at the hotel, so Chris will take the boys for the day. I think he may do one or two of the Smithsonian Museums with them. The museums are free, so even if Sam melts down and they have to leave after a short time, nothing is lost.

Wednesday is our big day on Capitol Hill! We spend all day meeting with members of Congress. California only has seven ambassadors going—and four of them are my family! Two others are from Southern California, and the final one is from the Central Valley. Considering that California has fifty-three congressional reps and two senators, that’s a lot for seven people to tackle. I’m actually team captain for California (not exactly sure what that entails, but I guess I’ll find out!), so my thought is that our two SoCal ambassadors can handle the SoCal reps, our Central Valley ambassador can handle Central Valley reps, and my little family of four can handle NorCal reps.

I’m told we can expect four to seven sit-down meetings, lasting 15–30 minutes each, and then for the rest of the reps we can just drop by their office and meet whoever is available informally, drop our information, and pick up business cards for staffers.

I submitted my request for about seven reps (I can’t remember exactly—it was a while back that I had to submit it), so we’ll see whether we get to meet them all. Our local Down syndrome organization covers nine counties, so I just asked to meet the reps from all of those areas. I’m pretty sure they’re all Democrats, so I’m going to be preaching to the choir on virtually everything. But I guess that makes my job a little easier!

In case you’re wondering what we’ll talk about, NDSS gives us three “asks” to discuss during the meetings. One is asking reps to join the Congressional Task Force on Down Syndrome. Easy peasy! One of the reps I asked to meet actually already belongs to it. A second ask concerns the ABLE Act—three support bills that will help make it a stronger program. (An ABLE account is a savings account that individuals with disabilities can use to save for their future—any money saved in an ABLE account is not counted against them when it comes to qualifying for services. ABLE was just passed last year, and states are in the process of setting up ABLE account programs. The finer details are still being worked out, thus the three support bills.)

The final ask involves the ACA/Medicaid. That’s the one I’m most nervous about because it’s such a moving target—obviously even more so, now that the vote on Friday was pulled! I want to know what I’m talking about, but with things changing so rapidly, I’m nervous about not being able to keep on top of it. Basically, the ask currently involves requesting no caps and no block grants, because either of those would devastate services for people with disabilities in California (and I’m sure probably some other states, too, depending on their setup—obviously California is my concern!). Anyway, not surprisingly, all of the Democrat reps are likely to be on board with that request already, which makes my job pretty easy. I just need to know exactly where things stand when we head out to meet with people!

We take a break on Wednesday for a lunch ceremony where I’m accepting an award on behalf of our state advocacy coalition. And then it’s back to our meetings.

It’s going to be a long day. I’m not necessarily expecting Sam to make it through the whole thing. I think Theo will, but I’m not so sure about Sam. But we’ve been told personal stories make a big impact, so I’m working on preparing a leave-behind bio about Sam. That way, if he’s not with me when I meet with a rep (if Chris has had to take him outside or whatever), I can at least talk about him and leave them with a little piece about him. Click here to read my work-in-progress, if you’d like!

Wednesday also happens to be Theo’s birthday, so we’ve promised to take him to a restaurant of his choosing for dinner. I have a sneaking suspicion he’ll be falling asleep in his food by dinnertime, but we shall see!

On the free days we have while in DC, we’re hoping to hit the National Mall (though the forecast is for rain, so…harrumph!). We also may hit some museums and other sights, though we really haven’t planned anything concrete. When traveling with small kids, we find it best to keep a fair amount of flexibility in our plans!

Friday we head out to Lexington, three hours southwest, to spend Friday and Saturday with my aunt! Theo was just there with me in the fall, but Sam hasn’t been in a couple of years. And Theo is very excited to see his favorite cat, Severus Snape, when we go!

Sunday we’ll drive back up to Baltimore for our flight home. It will be a long day of travel: 3.5 hours of driving to the airport, 7 hours of flying/layover, and then another hour drive home from the SF airport. Wow, I’m going to have tired, grumpy children by the time we make it home!

Honestly, the flight is the part I’m not looking forward to with Sam. Theo will do fine—he loves traveling and flying. Sam…well, who knows? He won’t understand that Netflix won’t work on his iPad on the plane, so I anticipate that being a fight that lasts pretty much the entire trip. (He’s used to being able to put on his favorite cartoons on Netflix by himself. The fact that it won’t work is bound to throw him for a loop.) And I’m not entirely sure he’s going to be willing to comply with the “sit down and wear your seatbelt for takeoff and landing” part, so it may involve physically holding him in the seat for those times—which I guarantee will involve shrieking on his part. Obviously, it’s a nonnegotiable—he has to sit and be belted in for those times, and he cannot be on my lap. So we’ll just see how it goes. We may be the scourge of the plane by the time it lands. 😉

Sam also does extremely well with routine and not always so well when faced with new, overwhelming situations. I anticipate that a crowded airport may be a rather overwhelming situation for him, so I created a social story to try to demystify it for him.

Many of you probably know what social stories are, but if you don’t…they’re basically simple stories with visuals that walk a child through some event. They’re used a lot with kids on the autism spectrum, who often have difficulty with transitions or new/unfamiliar events. When I looked for a social story about airplane travel, all I found were ones that were far too complicated for Sam’s developmental level. I wanted something very simple, that just walked through the basic steps of airline travel and had pictures to show each step. So, I found an app that allows you to design your own social stories, and I downloaded it and created my own! If you’re looking for something similar, I highly recommend this app! I created the social story in all of ten minutes. I downloaded pictures of the San Francisco airport and related images from the Internet, and then simply dropped them into the book, typed the text, and recorded my voice reading it. Voila! A social story! Sam has been looking at it independently for days, though I will admit that without guidance, he rushes through it much too fast. 🙂 Anyway, the app is called Social Stories Creator and Library, if you’re interested. Here’s a video of the story I created:

Fun little weekend bit: My mom and I went to see a play at the local community theater this weekend, and it was so funny! If you haven’t ever seen Moon Over Buffalo, I definitely recommend it. I laughed out loud numerous times, particularly in the second act!

I also got a date with Chris on Saturday night, which was a treat! The company that provides Sam’s occupational therapy periodically hosts “respite nights” where the kids and any siblings can come play for three hours while parents get a little time to themselves. This time, it was an Alice in Wonderland theme, so they did crafts and played games related to the movie, as well as watched the animated movie (the old version) if they wanted. The boys had a good time, and Chris and I enjoyed our date! We decided to a try a restaurant that had been recommended to us near the respite event, and it was really yummy! We had a Brussels sprouts appetizer that was to die for! Then I had lobster tacos for my entrée, while Chris had salmon. We split a cookie sundae for dessert.

Before I end this post, I must also mention that Theo got his second-trimester report card yesterday! Honestly, I don’t give a hoot about the scores on it in general. I have long since realized that it’s nearly impossible to quantify a child’s ability, so I look at the scores only to see whether there’s any areas where he is struggling and perhaps needs some additional support. What I’m much more interested in is the teacher’s independent comments about him, and here’s what his teacher said: “I appreciate Theo’s excitement for school and learning.” I couldn’t be more pleased about that! I told Theo’s teacher at the beginning of the year that our main goal was for him to continue enjoying learning, and clearly that is happening! I strongly feel that as long as he likes learning, he will continue wanting to learn, which is the most important thing to us!

She also commented “It is obvious that Theo is taking all of his own knowledge and internalizing it with the concepts we learn in class. He has an impressive ability to apply and connect concepts from one subject to another.” What I found interesting about this is that it’s exactly what his first preschool teacher said about him, when he was just three years old—that he’s surprisingly good at connecting different concepts together. He is indeed—and I think that’s part of what makes him so darn good at arguing! He will pull knowledge from other areas and use it (very effectively, I might add!) against you in an argument. Note to Theo’s future spouse or partner: I fear you have your work cut out for you in the arguments department!

I’ll leave you with a little funny. I don’t want to share too much detail, out of respect for Theo’s privacy, but I will say that we have been dealing with a particularly persistent behavior issue that had us banging our heads against the wall. We talked to our therapist about how to handle it, and she suggested a behavior contract, drawn up with Theo and signed by Theo and us. So, we crafted the behavior contract, very carefully, and all three of us signed it. It went very well the first week, and then this past week (the second week)…not so well. We reminded our future-lawyer son about the contract, and he promptly, without so much as missing a beat, found a loophole and outsmarted it. I don’t know how, since we were very careful to make it (we thought!) ironclad, but no—he found the loophole. He always finds the loophole. I should not be surprised. And he is going to be an incredible lawyer someday!

I think I’ve rambled on long enough, so let me say this: Would-be thieves, if you’re wanting to burgle our house when we’re gone, don’t bother. We have an alarm and we’re having a housesitter stay and take care of the pets. So you’re double-thwarted!

Also, I’ll try to post short blog updates from my phone while we’re gone, but no promises. Last time my phone app was kind of wonky, so I don’t know whether it will work. If not, you’ll get a nice, long dump when I return!

And without further ado, pictures!

Our cats are jerks. Here they are stealing bacon off the counter!

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Theo’s spring pictures came home. I never order them (because we have family pictures done every fall that I generally like better than the school pix), but I might have to order this set. It makes me laugh every time I look at it because it’s so Theo!! (Also, his head looks huge, and I give myself kudos for birthing that…)

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Cobb-type salad with crispy mushrooms, pears, gorgonzola, pecans, and avocado. Yummy!

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Usually Sam naps at school. But being home sick for three days, he napped at home. Or stood in his crib, threw things, and generally wrought havoc. See him standing on the left side of his crib?? He was very pleased with himself! At one point I spoke through the monitor and said, “Sam, it’s nap time! Lie down and go to sleep!” and he just replied happily, “Oh! Mom!”

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Salmon tacos with Asian-pickled cucumbers and avocado, with seaweed salad. So yummy!

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I love Timehop. This popped up on my memories the other day—our house when we took possession, but before we moved in (and before the junk haulers took away all the stuff left by the previous owner). Our kitchen was so bleak and grimy! It looks so much more warm and welcoming now, I barely recognize it in its former state!

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It was National Puppy Day this week, so Zoe says hi!

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Chris pointed out that my picture of Zoe looks freakishly like a pug picture we have hanging on the wall!

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Oooh, these were super good! Pizza dough “tostadas” with spinach pesto and tomatoes on top, served with Mexican street corn:

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Handsome fella:

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