Or maybe it's more like 21 for 21, as I've completely fallen off the wagon. Ah, but we've been busy with Halloweening around here. These photos are from last weekend--any photos tonight turned out dark, blurry, and soaking wet.
And I skipped another day. And the post before that was about baby food. And this post doesn't even have a picture. So, yeah, I think I'm running out of steam.
But, I must share with you, the most useful thing I have learned from reading Down syndrome blogs:
Take your four year old to the dollar store to buy a birthday present for his dad. Just like Kelle Hampton.
(Now, come on, you know you went and read through all her archives when you first discovered Down syndrome mama blogs, too. Admit it.)
Seriously, best idea ever. We did it tonight. I can't reveal what Toby bought, but the process was great fun. Also, this might be the only time you see the words "just like Kelle Hampton" on this blog.
So, what are you up to this month? You're still a friendly little guy, always happy to spread the smiles and make new friends. But you're getting a bit more picky about staying with babysitters getting passed around. (Thanks for interrupting my yoga class, twice. I get the message, no more YMCA childcare for you.)
You're getting sturdier as you sit--more likely to whine and cry when you get tired instead of falling backward onto your head. (How about we work on transitioning forward, instead? Really, it would be easier on all of us.) You're sitting in the cart seat as we shop, and you're steady enough to face forward in the stroller without your bucket. And still you managed to pull your toes up to your ears when we're strolling around. You're exploring toys more, banging them around, moving your fingers over them, seeing how they taste and feel and move. Your favorite perch seems to the the exersaucer these days. I don't blame you--with Toby running around I'd feel safer up off the floor, too.
You are a big fan of food right now. Bits of soft chicken or meatballs, baby puffs, pizza crusts, pasta, slices of fruits and veggies--we're adding tastes of finger foods to your meals of purees. You're remarkably coordinated when you want to get something into your mouth.
This month you rode in another plane--this time to visit mama's side of the family and to meet your little cousin. You didn't bother to show off your sitting skills much on that trip, though--plenty of family + wood floors meant that you were usually in someone's arms.
This month you slept through your first Buddy Walk, and just yesterday we went to the pumpkin patch with DSANI. Not even a year old, you're already filling up our schedule and introducing us to new friends. During this Down syndrome Awareness month, we owe you some thanks for sharing this community with us, kiddo.
Well, I missed a day. I'll blame weekends, deadlines, and the first family cold of the season. We took it easy today, skipped church all together, and finally got our of our PJs late in the afternoon to join our local Down syndrome group at a pumpkin patch. Photos? Of course.
I've gotten a couple of questions lately about what exactly Down syndrome looks like, day-to-day, with our nearly 9 month old. So, I thought I'd put together a little post about how the 3rd 21st is a part of our lives, today.
Of course, we must start with the disclaimer--a diagnosis of Down syndrome only means that one has 3 copies of chromosome 21. The symptoms & situations vary from person to person, as does the severity of many. So this is what our life looks like, not anyone else's.
Max's biggest hurdle right now is his low muscle tone. Hypotonia is very common for people with Down syndrome. Throughout his life this can impact motor skills--but also speech, digestion, sleep, you name it.
Down syndrome gives Max a few other challenges to deal with as he learns
how to move around. His limbs are short, so his arms don't reach the
ground as easily when he's sitting. That changes how he catches himself
from falling, which, in turn, changes how he experiments with pushing
into crawling position. He's hyper-flexible--which can be very cute
when he's sucking on his toes in the stroller. But it also means that
his muscles have to work extra hard to hold his body steady enough to
walk or grab a toy.
A physical therapist comes to our house to work with Max for one hour a week. This is a free service from First Steps, our federally mandated, state funded Early Intervention program. Right now we're working on strengthening his arms and shoulders (good for crawling, and also for playing) and learning to get out of sitting by leaning forward on his arms instead of flopping backward and hitting his head.
I suppose there are other little things, too. Max's mouth is small, so his tongue sometimes out--which leads to double the raspberries. His nasal & throat passages are a bit small, too, so his breathing can get noisy when he's stuffed up, and he can make a startling snort/sneeze/grunt when he wants to scare babysitters. It's hard sometimes, when folks notice something about him, not to say, oh yes, that is the Down syndrome, because many of his quirks can be traced back to it. But he takes what he's got and makes it his own--hypotonia becomes cuddliness, a protruding tongue turns into his signature rockstar face.
So that's where we are today. I didn't really know about the physical impact of getting an extra chromosome before Max came along, so I'm happy to share what we're learning as we go.
Toby comes home from school every day with stories of his team of super heroes and their fights against evil on the playground. It sounds mostly harmless, but I wonder about how the team chooses their "bad guys" From Toby's descriptions, I'm not entirely sure that the "bad guys" are aware that they are a part of the game at all. Then again, I'm not sure whether the superheroes are targeting real preschoolers, or fully imaginary foes.
For as little concrete information as I've gathered about this game, he certainly spends a lot of time talking about it. Sorting out who's bad and who's good is serious work for a preschooler.
He's curious about real-life bad guys, too. His preschool held a lockdown drill at the beginning of the year, which led to lots of awkward conversations about why a "bad person" would be in the school in the first place. Earlier this week, his school had a real lockdown (while we were out of town) when two 18 year old boys shot at each other just blocks from the school. One of the teens is in the hospital now, the other is dead.
This summer Toby noticed a "bad man" at the swimming pool. He was a teenager, with a broad forehead and deep eyes. One side of his face moved a bit behind the other, putting his eyes a bit off of focus and his mouth in a scowl. Any adult would look at this teen and label him "disabled," but Toby--drawing on Disney villains and storybook illustrations--was convinced that he meant us harm. Even after a talk about how all people look different, Toby still eyed the teen with suspicion, ready to use his superpowers to defend himself if necessary.
It's hard work deciphering the real threats from the imagined. We're trying to raise a little boy who isn't afraid of difference, who sees beauty in all people, who learns not to stick labels of "good" and "bad" on complex human beings. But then, of course, he'll also learn that the "bad guys" can't always be spotted, classified and neutralized in time. He'll have to learn that our fears are much closer, much too close. Someday he'll see that two boys--not good or bad, just boys--can cause more damage than a supervillain.
So, we were in Texas for the past few days. And I am terrible at typing with my thumbs, so I just posted pictures and figured that my loyal readers (hi Lauren!) would figure it out. My brother (who is evidently also reading, hi Matthew!) says that is cheating. Whatever. I'm going to get one more picture post out of this trip before I return to writing real posts. Sorry folks, it's time to get out the slide projector:
Max got his first look at the ocean. He loved the waves. And he just kept on sucking his thumb through it all, even when he was covered in sand.
Toby averaged 6 trips to into the water per day. This Midwestern boy is ready to hitchhike to the shore and become a surfer.
We saw alligators. They don't photograph very well, but they were darn close. And if you read the rules I posted a few days ago, then you know that an alligator thinks of you as dinner if you're within 30 feet. We also checked out an aquarium, ate some local seafood, and drank plenty of margaritas.
But mostly we stayed back at the house and played with the cousins.
And made them pose for pictures.
All with a view of this off of our porch.
Four quick days to have my family together, to meet our newest little member (she & Max are just 6 months apart), to get a glimpse of the Texas shore and to relax and read and nap and eat and enjoy some vacation.
This week in PT Max started sitting (with some very active spotting) on a little bench. It's good practice for him sitting (there's less surface area there for him to support himself, so he's gotta work that core) and getting some weight on his feet to work toward standing. And unlike the therapy ball, I feel like I can do bench exercise with Max without dropping him. Our PT has several kiddos his size using the bench right now, so she couldn't leave hers with us. She encouraged us to find something the right height around our house.
She suggested a shoe box. I think that sounds like a wonderful reason to go out and buy some shoes. But until that happens, we found a Priority Mail box that was sitting around.
(Side note: I once got lectured at the post office for REUSING a free Priority Mail box, covering it in butcher paper to hide the old address, and trying to mail it--gasp--FIRST CLASS! The clerk watched as I unpacked my whole box and repacked it in a new box, and payed priority shipping, all while toddler-Toby was running amok. So, yeah, I know that these boxes are provided for free ONLY to be used for shipping. I'm pretty sure this post shows me breaking a federal law. Luckily, the government is shut down, so no one will come after me.)
We filled it full of stuffed up newspaper. We crumpled the newspaper, rather than putting it in flat, because I didn't want a big heavy bench landing on baby's toes. So, crumple, crumple, squish, squish--Toby and Max enjoyed this part of the project.
Then, the fun part. Max, he's a spitter. So we went to work laminating the whole box with duct tape. Yay for pretty colored tape! Toby decided it also needed to be decorated with Max's name.
Ta-da! Bench! Here we are using it.
C'mon, Toby, back up a little so that we can actually see the bench.
That's better. Sort of.
The bench is about half an inch too tall--we want Max's feet flat on the ground when he uses it. So I haven't given up on the idea of buying some shoes just to make another, shorter bench. But until then (or until he grows a bit) we've had good luck putting a thick book under Max's feet.
There you go, there's your therapy craft project for the day!
I wasn't feeling all that opinionated today, so I was thinking that I might post about my thrifting luck this morning. But then the mail came. And I learned that after six months of telling me otherwise, our insurance will not cover "services that are related to development delay."
I could give you a play-by-play of the phone conversations I've had over the past months. I could complain that in these conversations I repeatedly mentioned "Down syndrome," and no one thought to double check that "delays" were covered. I could admit that, in true insurance-speak, nothing was ever promised. But it's a dull story, one that's played out many times before, and it ends with our insurance not covering Max's private speech therapy.
The speech therapy that we've been attending monthly, all year, under the assumption that it was covered.
We're okay on the money. It's not how we were planning to spend it, but we've got it. More than that, it just hit hard that there are so many questions and so many clauses and so many hoops, and I don't know anything about what we've gotten ourselves into. I hate that.
I hate that the wording of the notice implies that the insurance company thinks that my son isn't worth fighting for. That his delays are to be expected and not worth fixing.
It was an awesome green jacket, with a designer label, by the way. I went to the thrift shop looking for a fall jacket, and I found one that I kind of love, and I'm hoping the weather is cool enough that I can wear it tomorrow. So, there's that.
Last weekend we walked for "Down Syndrome Awareness."
Last spring, when Max was not yet two months old, several friends alerted me to World Down Syndrome Day, March 21 (that's 3/21--which is a pretty good little pun). According to the internets, we were all to wear lots of socks or mismatched socks or do something with socks in order to "raise awareness." (The sock thing confused me. I blamed it on postpartum sleeplessness, but then I saw this post that explained my dubiousness much more clearly.)
And right now I'm doing it again. I'm blogging every day this month "for Down syndrome awareness."
Awareness? In the words of a famous sword-fighter, "You keep using that word. I do not think it means what you think it means."
Thing is, I don't really think there are many people out there who are unaware of Down syndrome. Heck, most lay people can diagnosis Down syndrome from 50 yards away.
So why do we write or walk or donate? Education? That's good, there's certainly a lot I didn't know about Down syndrome a year ago, and a lot I'm still learning. Advocacy? Oh, that's better. I don't just want people to be aware that my son exists, I want to make sure he has opportunities and safety and respect. Acceptance? Absolutely.
Awareness is a soft word. It's easy to get folks on board, because there's nothing to disagree with. But there's also nothing behind it.
So, despite the words on the button to your right, I prefer to think that I'm blogging this month "for community." This is my chance to get some of my thoughts down, and to read what others are up to. To find a few new blogs and to let someone else read mine, and hopefully we can both encourage each other a bit.
I walked "for advocacy," hoping that our local group can use the money to reach out to families and provide opportunities for people of all ages with Down syndrome.
I'm happy to celebrate, educate about or work for acceptance of having 3 copies of that 21st chromosome. But awareness? Nope, not a goal. We can do better than that.
"Clapping. Max is all about clapping. It's his favorite."
"He's clapping already?"
"No, no, he's not doing it himself. But he loves it when other people clap..." and as I ramble on about how adorable Max is when he tries to grab onto clapping hands, I realize that our therapist has lost interest. No, that's too harsh. She's still listening to me, as a friend and mom, tell stories about my son. But she's realized that this story isn't for her--there's no milestone to check off.
That's why we have physical therapy once a week. And it's why (even though I like our therapist and mostly enjoy the sessions) I sometimes resent it. As a mom, I notice Max's personality emerging. Our therapist notices his development.
Last week at our library's storytime the librarian brought out a parachute at the end of the session. The parents fluffed it up and down slowly, and the babies watched in awe. Seriously, cutest little photo-op ever. They loved it. Max sat tall, and watched the colors move down, and then up, up, up over his head. He raised his chin way up, and he didn't fall over backward. It was the same movement he had practiced in PT, and I grinned thinking, "This is good practice." And immediately I hated thinking that. Because really, what can be happier or more carefree than a bunch of babies watching a floating parachute? Of course it's learning for all of them, but who wants to ruin it by thinking about that?
I am incredibly thankful that we've got someone coming into our house to do this work. But that doesn't mean that I can't get fed up with the relentless necessity of noticing how all the little parts of a normal childhood are just therapy in disguise.
Monday mornings are the best part of this whole stay-at-home-mom gig. After a weekend of friends and Buddy Walking and church and family, this is my time to clean up and catch up.
Lately, I've been spending every spare minute on the weekends working on a writing project. It's freelance work for a publisher, so I can't say much about it. It's a new process for me--writing drafts, reading feedback, trying again. I'm working with a tight word count, and I'm trying to make my writing fit into a larger project, so there has been a lot of fiddling and questioning and rewriting. I haven't worked this hard on my writing since college, and it's been a great--if sometimes tiring--exercise.
And, that means that I completely abandon any responsibility around the house all weekend.
So today is for groceries and laundry and picking up toys. It's for sorting through the bag of wet rain gear that got thrown into the car after the Buddy Walk. It's for enjoying the silent house.
After a weekend of mess-making-play and work that involves shifting the same words again and again on a computer screen, Monday mornings feel productive. In an hour my whole house will look different--calmer if not actually cleaner.
The photo above is from a recent sand painting by a group of visiting Tibetan Buddhist monks. They created this picture over four days at our library. At the end of their visit, they wiped away the sand and released it into a local river, with their blessing. I considered taking pictures of my messy house to accompany this post, but really, who wants to look at that? This seemed a fitting image for contemplating the impermanence of a clean home.
Our team collected $1718 for the Down Syndrome Association of Northeast Indiana.
Wow. Just wow. Big huge thanks are owed to our friends and family. I'm still kind of floored by the response we got as we asked for donations. I figured we could raise $500. I set our goal at $800 to give us something to reach for. Y'all doubled it, and then kept on giving. Thank you.
We've received such amazing love and support from our friends and family this year. And now so many of you have shared something with the wider Down syndrome community, too. I hope that your gifts are used to make all of the individuals with Down syndrome and their families feel supported the way we have been.
And, I'm taking your faith in Max and in our family as a bit of a challenge. Now that we've gotten through the newborn adjustments, it's time for our family to get more involved in DSANI. We want to stay active in their socials and playgroups for Max's age group so that we can meet other families that are in a similar place on this journey. And I'm hoping we'll find ways to contribute to the programming for other ages, as well. I want to hear from families with older children, and I really want to meet more adults with Down syndrome. I'm guessing there's a lot to be learned by people who are farther along this particular path.
The walk itself was fun. We had a good group of friends to keep us company. Several folks asked for photos of Max, because he's just so darn cute. He slept during the 1.5 mile walk, but was awake before and after to make his appearances. Toby had a blast running around with the other kids. The rain mostly held off during the walk, and the sun beat down as soon as we crossed the finish line. There were hotdogs and cupcakes and a bounce house and a train. Overall, the walk has raised $45000 for DSANI, and I'm guessing that number will continue to rise as straggling checks come in this week.
Look out, friends, I've already got some ideas on raising money for next year.
Tomorrow is our first Buddy Walk. I'm excited, and floored by the support we've received from our friends and family. I'm hoping for a beautiful sunny fall day tomorrow (the forecast is calling for muggy summer rains), and lots of pictures to share with you this weekend.
But before that, I decided I need to give Toby the what-we're-doing-on-Saturday briefing. I'm not sure exactly why. I
suppose I want to make sure that he feels comfortable asking questions.
if I'm being honest, I'm worried that Toby will say or do something
that will embarrass me. That's unfair of me, I know. And most of the
time I try to just let things be, and wait for Toby to bring up his
questions on his own. But two days before we were going to a big old
celebration of Down syndrome, I found myself trying to explain this all
to Toby, again.
We told Toby the words "Down syndrome" as soon as Max's diagnosis was confirmed. Unfortunately, at the time, tiny Max was still in the NICU, and Toby wasn't even allowed to visit him. After months of waiting for his new brother, Toby was getting passed around to friends and relatives while Christer and I visited Max in the hospital. Poor kid, he associated the words "Down syndrome" with the sickness that was keeping Max away from home. It took months for his young mind to untangle "Down syndrome" from those first few scary weeks.
I'm still uncertain how to explain Down syndrome to Toby. There are lots of cute little books out there, and little videos and whatnot, that all explain that a kid with Down syndrome is "just like everyone else." Toby finds these boring. He knows that his little brother is just fine. And I'm hesitant to explain Down syndrome in a way that will color the way he thinks of his brother.
So yesterday we watched this video. It's a fabulous video, and I would recommend it to older kids and teenagers. But really, Toby is still to young. Again, like the everyone-is-the-same children's books, he was just bored.
So for now, Toby knows that Max has Down syndrome. He knows that this involves Max having 74, or maybe it was 47, of something or other. He knows that it will take more work for Max to learn some things that were easy for him. It took Max longer to learn how to breathe, and that is why he was in the hospital. It is harder for him to learn to sit, crawl, and walk, and that is why a teacher comes to work with him once a week.
He knows that tomorrow some of his friends will come walk with us at the Buddy walk, and that hot dogs and cupcakes are involved. He's excited to wear his new T-shirt.
And I am trying to remember that really, there's no need for me to worry about this. Toby is going to understand Down syndrome better than the rest of us. And someday he'll find this blog, and he'll probably think all this fuss about nothing is boring, too.
This morning I met a mama who is waiting to adopt a little guy with Down syndrome from abroad. The little boy is one year old, and I cannot imagine what it must be like sitting around waiting for red tape, knowing that your child is waiting for you.
Our quick chat got me thinking about the difference between adopting and getting a freebie.
And those thoughts lead me to questions about joining this whole Down syndrome club. The support and encouragement we've received, though our local Ds group and through blogs and through research--it's all ABOUT people with Down syndrome, not FROM people with Down syndrome.
I'm an honorary member in this community--and yet the whole community seems to be made of honorary members.
And maybe that's why I was a bit hesitant in joining a blog challenge associated with Down syndrome. What right do I have to identify myself as a member of the club? I didn't ask to be included. I'm so new to this that I don't really know what it means for me, let alone have any advice for anyone else. I'm almost as ambivalent about putting a label on myself as I am about letting Down syndrome define my son. And, let's not forget, I don't have Down syndrome. I'll always be learning about that 47th chromosome from the outside.
But I joined in for the same reason I'm blogging at all. Because I think these early questions matter. Because it helps me sort things out to write them down. Because I might meet some other folks asking the same questions, or those who have come up with some of their own answers.
Because if I'm asking these questions, then that means I'm already in. I'm in the club, one way or another.
Yup. It is. 31 blog posts in October for Down syndrome awareness, or something like that. I went back and forth on whether to give it a go. Partially because I'm still puzzled over the word "awareness." Partially because I don't know that I'll manage to post every day. And while I was busy puzzling over whether or not I wanted to participate, I forgot that October started yesterday. So I am already one day behind.
But, I do like posting here, especially when I don't wait until midnight to do so. And it'll be fun checking out some new blogs. So, one day late, here goes. 31 posts in, well, 30 days. Be prepared to be aware.