Mar 5, 2017: Party Weekend

Happy Sunday, y’all! It’s party weekend around here—at least for Theo, who was invited to two birthday parties this weekend. On Saturday, he and Chris went to cousin Nik’s 9th birthday party. Sam and I were going to join them at the arcade, but Sam was having a rather uncooperative, crabby day, so he and I ended up staying at Grandma Kathy and Papa’s house and visiting with them while Chris and Theo went to the arcade. We all joined them for pizza after—Sam never misses a chance to eat “Za,” as he calls it, and he enjoyed the vanilla ice cream part of the ice cream cake, too. (I’m quite skilled at excavating JUST the vanilla channel for Sam, since he’s ultra picky and refuses to touch the cake part or the chocolate ice cream part. Is it possible he’s not actually related to me? Because you know I’d go for the chocolate part first!)

Today (Sunday), Theo has a party for a classmate—indoor soccer and basketball, so hopefully he’ll come home nice and tired! Meanwhile, Chris plans to take a couple of hours of alone time to work on a letter he’s been writing to our congressman, and Sam and I will hang out at home. We got quite a bit of rain last night, so it’s a bit too soggy for a park trip. The rain even yielded more snow on the top of our mountain, which is so pretty to look at! I keep trying to take a picture of it, but it doesn’t show up nearly as pretty in a picture as it is in person. Still, here’s a pic from this afternoon—looking across the street to the retirement home, with the mountain behind it. You can’t see too much of the mountain because the clouds are low, but you can see the snow a bit!

IMG_8556

Speaking of Theo and classmates, we had a surprising development happen about a week ago. Theo generally gets along with everyone, but for whatever reason, he and a fellow classmate have been like oil and water since first grade. I wouldn’t go so far as to call it bullying, but this particular classmate has been known to pick at Theo. (I say this not as a “my kid can do no wrong” parent, but based on what their teachers have told me—Theo has generally not been the instigator, although he will certainly snap back when poked!)

Anyway, turns out this kid came up to Theo about a week ago and asked if he could be his friend! I guess Theo said “sure” and then, after the boy walked away, said, “That was strange…” Their teacher overheard the exchange and emailed me about it. I said, “Does he really want to be Theo’s friend, or is he messing with him?” Theo’s teacher said she was pretty sure the request was genuine—she said, “I think he’s realized that Theo is very well liked by everyone in the class, and so he wants to be his friend.”

I’m happy about this for a couple of reasons. First of all, I’d certainly rather have Theo and this kid be friends than enemies—why have an enemy when you can have a friend? But second, as much as I know adults really love Theo, there’s always a part of me that worries a bit about other kids. In some ways he’s very much like any other boy his age, but in some ways he can be quite different—and sometimes different can equal disliked. (As someone who put up with her fair share of CRAP from classmates throughout school, I’m all too familiar with this.) So I was really happy to hear that apparently, he’s quite well liked by his classmates! Did my heart really good to hear that—I’m so glad his friends can recognize and appreciate all that is fun and wonderful about him!

Switching over to Sam, he’s had a great week in terms of speech development! He seems to be in a bit of a developmental leap there, which we are very excited about! We’ve been prompting him to string together more words (he normally just says a one-syllable utterance at a time, but will occasionally put together two one-syllable words), and so one evening he came up to me and whispered, “Suss,” which is what he calls the iPad. “You have to ask,” I replied. I prompted, “I…” and waited, expecting to have to prompt each word. Normally it goes something like this:

Me: “I…”
Sam: “I”
Me: “Want…”
Sam: “Want”
Me: “iPad”
Sam: “Pad.”
Me: “Please…”
Sam: “Peas.”

But this time, it went like this:

Me: “You have to ask. I…”
Sam: “I…want…more…pad.”

HOLY COW!! That is huge! A four-word sentence, with minimal prompting!! I whooped and hollered and cried a bit, while handing him the iPad. More iPad you shall have, boy!

By no means is he now regularly talking in sentences. He still requires prompting, and most of the time I still have to prompt each word one at a time. But it’s a huge step, and it’s very exciting for us!

His speech therapist has been working on this as well. Here are a few videos from this week. She also drew a little picture of three numbered circles (1, 2, 3) to work on counting at the same time: She bribes him with Fritos, and she was having him ask for one, two, or three chips by placing the correct number of Fritos in the circle with the associated number. When she texted a picture of it to me, I wrote back, “So how long did it take for him to figure out to ask for three every time?” She replied, “Oh, he had that figured out on the first round. He asks for three every time unless I take away that option, in which case he asks for two!” Smart boy—and clearly one who understands the idea of countability, at least on a small scale!

I love how he says “two” here!

The way he says “three” slays me!!

And I love the way he says “EAT” here!

You can see here that he only required prompting on three of the four words in the sentence!

And finally (moving on from chips), you can see he has learned the associated letter sounds that go with the letter (as well as being able to recognize the letter!) and that he can quickly match the letter with its mate. Things like this are why I’m confident that academically, he can succeed in kindergarten. Talking may be a real struggle for him, but he clearly knows what he wants to say—it’s just a matter of saying it!

Because of the way Sam’s services will change after May (due to his IEP), we will have to give up this speech therapist then. (She is private and doesn’t take insurance, so we can’t use her that way.) I’m sad because they work so well together! Hopefully whatever SLP the district assigns will be just as good as the one he’s been working with—and we’ll also probably supplement with one through our insurance, so hopefully he/she will be good, too.

In other news, I had my post-op appointment and was cleared for exercise, so I am back to walking the boys to school and had my first trip back to the gym today! Thank goodness. I really felt like a couch potato these last four weeks, unable to exercise. I refuse to even step on the scale. Before surgery, I had religiously gone to the gym at least six days a week (often seven) for an hour a day for fifteen months, and I hadn’t lost a single pound. (Seriously, I think I have the world’s most irritating metabolism!) I can only imagine what I’ve gained since I’ve had to sit like a lump for four weeks! But anyway, now I’m back at it. Wheee!

I also had my first individual acupuncture session this week. WOW. Just wow! I’ve been going to group acupuncture for several months, which is just sort of an overall wellness thing. They put five needles in each ear for overall wellness and pain relief, and it works very well for me. But I finally snagged an individual appointment, and WOW! I told the doctor specifically what I wanted to target (fibromyalgia pain, an annoying urinary issue, and if anything could help lifelong insomnia, awesome), and he put in six needles and left me alone to relax for twenty minutes. He advised me that the fibromyalgia was workable since it’s fairly new (within the past couple of years), as is the annoying bladder issue. But the insomnia, he said, was likely to take much longer to see results, because it’s been a chronic, lifelong problem. Fair enough.

Anyway, I got up from the table after my twenty minutes, and WOW! The pain that had been radiating up my leg when I walked in (seems to be a common trouble spot for me the past six months or so) was completely gone, as was the pain in my joints. Gone, gone, gone!!

Of course, it comes back after a few days, but slowly…and manageably. It’s not like on Day 3, I’m suddenly in a lot of pain. It’s more like after a few days, I start to notice the stiffness creeping back in. And it gets a little worse day by day, but then I go back for another treatment, and I get relief again.

And it’s a whole heck of a lot better than it used to be! When I finally went into the doctor and got the diagnosis of fibromyalgia, I was in pain pretty much every day, with it being worse at night. Many nights I would be running a low-grade fever, too. Ever since I started acupuncture, that rarely happens. I’m still stiff at night sometimes, but not nearly as bad—and I’m not getting fevers from it anymore. It’s glorious, I tell you—glorious! I am so relieved to have found a way to manage the pain. I suspect my family is glad I have, too, because I’m probably much more pleasant to be around, given that I’m not in pain all the time. 😉

Anyway, the individual acupuncture appointments are a little hard to score, since our medical group only offers acupuncture at one location and only has a couple of practitioners. But the doctor said I can continue having them and filling in with group acupuncture whenever I want, so I shall do that—between the two, I think this is all very manageable.

Last but not least, I have to share that I worked at the 16th annual Developmental Disabilities conference at UCSF this past week. I manned a booth for our local Down syndrome organization, but I also gave a presentation on talking to new families who have received a DS diagnosis, myths about Down syndrome, and the resources our organization can offer to local families.

I’ve given this presentation several times, but usually to small groups. This time, it was to 275 professionals in the medical field: doctors, nurses, social workers, psychologists, Regional Center workers, etc. Every time I give the presentation, I tweak it a bit based on feedback I get. And I think I’ve finally hit the sweet spot with it! I got a lot of really positive feedback on it—had a lot of people stop by the booth afterward to tell me how informative they thought it was and that they really appreciated the positive look at the topics from a parent’s perspective. A few asked about possibly having the presentation done at their own hospitals, which is great—we’ve been trying to get scheduled into more hospitals, so I’ll be very happy if this leads to a few more speaking engagements!

The funny thing is, I really hate public speaking. I do it because I think the message we’re sharing is very important, and I can do it—but I’m definitely not comfortable doing it. I sweat profusely, and I white-knuckle the podium every time. But people tell me I appear very calm, so I guess I hold all that nervousness on the inside. (And if they got close enough, they’d probably notice the sweat!!)

Anyway, just as after Cincinnati, I am again battling a multiday headache, but hopefully it will go away soon. I enjoy working conferences, but I end up with a nasty headache every…single…time, which I suspect has to do with the tension of being a mostly introverted person who has to be on and talking to people all day long! Good thing my normal day job allows me to sit quietly at home….

Hope you all had a wonderful week! Next weekend it’s time for my annual Summit Weekend with my two BFFs! This year, we’re doing it in San Francisco, so I don’t have to fly anywhere—wahoo!! Not sure what Chris and the boys will do, but I’m sure they’ll find some fun adventures to have. Until next week…

Looking very proud of himself after uttering his four-word sentence:

2017-02-27 19.14.26

“Mom, I know you’re excited about the talking, but please leave me alone to watch Thomas!”

2017-02-27 19.15.47-1

Udon noodles with butternut squash, cucumbers, radishes, pumpkin seeds, and toasted sesame seeds. Tasty!

2017-02-27 20.37.48

Leave the cat alone for five minutes, and she’s into the salmon:

2017-02-28 20.14.48

After being nibbled on by the cat, the salmon eventually made it into this curry:

2017-02-28 20.47.02

Sam wanted the melted ice from my iced mocha. Notice the weather outside the car window? It was hailing!

FullSizeRender

When he couldn’t get anymore through the straw, he took off the top for full access. Who was the geneticist who told me he’d never be able to problem-solve? I never taught Sam how to take a lid off….

IMG_8552

The rigatoni with brussels sprouts tasted good but didn’t look very pretty. Notice what it was supposed to look like in the background!

IMG_8494

The problem with commuting to SF for a conference–even at 5:30am, you sit in 30 minutes of traffic waiting to cross the bridge.

IMG_8495

Probably the only time I’ll ever be listed as guest faculty at at UC university!

IMG_8497

Why do the men in my house do this? The spindle is RIGHT THERE. It would be so easy to put the fresh roll on! And look–the garbage can to throw the old roll in is RIGHT THERE TOO! So why? Just why?!

IMG_8504

Vegetable larb salad. Super yummy!! The carrots were pickled with shallots and vinegar, and the mushrooms and broccoli were tossed in a soy glaze:

IMG_8506

Theo and his beloved teacher on Dr. Seuss’s birthday:

IMG_8507

I was exhausted after the conference and laid down on the couch in my pajamas. Who came up to cuddle with me but this snuggle bug?!

IMG_8513

Homemade falafel with roasted sweet potato salad. Really yummy!

IMG_8514

Are these camera leggings not super fun?! I don’t usually wear pale pink, but I loved the cameras!

IMG_8516

He was deliberately goading his brother (and very happy about it!) on the way down to San Jose:

IMG_8526

He stole the remnants of Chris’s chai tea and drank them, then ran around the house like a wild man, with sprays of chai going all over the floor. I would’ve been annoyed except that when I came upon him, he had gotten a towel and was very carefully cleaning up his mess, with nobody haven’t prompted him to. How could I be mad at that?!

IMG_8538

He picked out his outfit to wear to meet Congress. Looking snazzy!

IMG_8547

 

 

 

Leave a Reply

Your email address will not be published. Required fields are marked *