just everyday news December 30, 2009
E has earned himself the nickname “The Creep” by mastering the art of cross-creeping. Sometimes, when he is on a slippery surface, he drops to his belly to do that belly crawl, but he mostly gets around on hands and knees these days. We also have seen him shift into half-kneeling (kneeling on one leg while pulling the other up to put the foot flat on the ground; first step in standing on one’s own) a couple of times since the past weekend.
fabulous new shoes to crawl into the new year
He has also started private OT with a focus on feeding and oral motor skills. He clearly feels very comfortable around his new therapist because he babbles around her. He works on all of the fun gross motor challenges she lays out for him, and then his reward is getting to swing for 10 minutes in preparation for us attempting to feed him. Usually he is in such a blissed-out trance after swinging for a few minutes that he allows his OT to do anything she wants with his mouth for about a minute… before he realizes it, snaps out of his trance and puts up a big fuss. Okay! Okay! Here! Swing some more!!
The anticipation and excitement that surrounded Christmas this year on T’s part was almost unbearable. Well, when you combined it with the fact that he wouldn’t go out and play by himself and instead insisted in staying inside and bouncing off of the walls. Mother Nature at least gave us a lot of reason to get out and shovel, dumping a lot of snow on us on Christmas Eve (14 inches?). The mercury then inched above freezing and the snow turned into slush, making it very heavy to shovel. On Christmas Day, the plow drove down the middle of the street, creating 3-foot walls of snow on either side… blocking in all of the cars parked along the side of the street. And then… it froze solid over night! Just in time for the snow emergency plowing rules. There were many very frustrated folks trying to get their cars out from behind those solid walls of snow and ice in time to not get towed.
Jo made us a lovely tenderloin roast on Boxing Day, and we spent the day sharing gifts and food with the whole family, which was wonderful.
Loving his stripey froggie from Nanny Connie... almost as much as the wrapping paper
Christmas is exhausting
Back to school feels like a long way away, even though it’s just next week.
Jolly Old St Triceratops
kids, generosity and money December 24, 2009
It’s fairly common around here to find, on the corners of intersections or on the pedestrian mall downtown, homeless folks with cardboard signs asking for money. It has to be the cardboard sign asking, because otherwise they can get busted by the cops. I’ve been known to give folks money, coffee cards, bus cards with a few bucks left on them… if I can spare it, I’ll share it. I’ve done this with T along before and explained that they need it more than I do. I don’t always have anything to spare.
He has seen me write checks for church. He brought home a collection box from his religious ed class to collect spare change for the UUSC. I’ve told him before that we use our money to support things we believe in. He also knows that school costs money, food costs money, clothing costs money, toys cost money…
He gets money from people for his birthday, and sometimes he gets change from us. He has an overflowing piggy bank and inherited his grandpa’s wallet for his paper money. A couple of years ago, he spent some money at the state fair to buy a toy tractor at the John Deere building. But he doesn’t seem interested in buying junk. He doesn’t want to buy lots of toys (except at the thrift store), or candy, or much.
He wants to give away his money. He wants to share it with people who are important to him.
I guess that the whole “we put our money where our mouth/heart/values are” thing has sunk in. The first time I heard it was when he got a $5 bill for his 5th birthday. He decided he wanted to give his $5 bill to his friend because he wanted to share and “Q likes money”.
Most recently, when we were making Christmas cards for teachers at school, he was finishing up an envelope for his preschool teacher from last year and then suddenly asked “where’s my wallet?”. When I asked him why, he said because he wanted to put a few dollars in his teacher’s envelope. I first tried the tack of “well, the envelope is already sealed”, but that was pretty easy for him to go around. I then told him that we had given her money last year when she was his teacher, and this year we were giving money to his Kindergarten teacher and her assistant. He was hard to dissuade.
That night when I thought about it, I wondered why I dissuaded him at all. I mean, we teach him all about supporting things that are valuable to us financially. School is obviously valuable to him. He wanted to be generous. Should I have let him put his money in his teacher’s Christmas card? It just seemed to me that that was not something he should have to spend his money on. But what should he spend his money on? Candy? Junk toys?
I fear I made a mistake. Not the first or last time, of course, but I’m really looking at how to approach this. When I got an allowance, I always spent it on candy. I can vividly remember standing in front of the candy display at Ben Franklin for upwards of 10 minutes trying to decide what to spend 32¢ on. But I find myself saying things like “honey, you don’t have to spend your money on that…” – meaning that he shouldn’t spend his, that I would spend mine on his behalf. The money we put in his teachers’ envelopes was, obviously, from the family coffers. It feels very strange to me to think of him giving HIS money to his teachers. But maybe it shouldn’t?
Happy Solstice December 20, 2009
We went to a Solstice ceremony at church. T liked it. Mostly he wanted to run walk the labyrinth, but he did enjoy the story about the sun being tired and resting in the embrace of Night’s arms. Was a very, very peaceful image. Tonight is the big Solstice service at church, at which they expect upwards of 700 people.
Happy Summer Solstice to my southern hemisphere readers, and happy Winter Solstice to those of you up here in the north. Tomorrow we go to our neighbor’s Solstice party, but sans Christmas pudding – never got made this year. Perhaps a cranberry one tomorrow – we’ll see if I get it made. Most importantly, I MUST get T out in the fresh air tomorrow. He played inside most of today and was a freak by 7 PM.
December 20, 2009
The Pogues & Kirsty McColl – Fairytale Of New York
tis the season. Do enjoy the Christmas song that doesn’t get airplay on the Christmas stations.
and the winner is…. December 18, 2009
…Chips from PLUMP, even though she says I don’t have to send her chocolate internationally. And why the heck not? I might wait until it isn’t high summer with you, though, if you don’t mind (say… March? April?).
You can e-mail me your address (onlywhoiam at gmail) and your choice of chocolate bar. I am partial to the Prairie Dog because I’m a milk chocolate fan and the chocolate + salty thing really, REALLY floats my boat, but friends of mine say the Chile Limón is also really good.
Thank you to all of you who shared your words of weekly awesomeness, from happy happy joy joy baby adorableness to babies finally healthy to recovering from loss and scratching wicked itches. They are all, each in their own way, a bit of inspiration, to keep us going. I loved reading them.
as promised December 12, 2009
…but don’t forget to go down two entries to “our apologies” and share your awesomeness of the week to be entered in the drawing to win a chocolate bar of your choice from local chocolatier B.T. McElrath.
So, life has given me an opportunity to sit still with a strong cup of coffee. Wife and elder boy are asleep, baby is playing happily by himself on the floor for the moment.
Clearly I typed that too loudly, because I hear T opening his bedroom door upstairs, and the baby just yawned. Oy. But onward:
We have just been to a feeding clinic to look for advice on how to get E eating more solids. Check that – eating ANY solids. We try at each meal but are lucky if we can get a teaspoon of food in him over the course of 10 minutes. Usually it’s sneak the spoon in while he’s not paying attention and wait 3 seconds for his tongue to push it back out. Clean off lip with spoon, rinse, repeat. Finger foods are worthless on the eating spectrum: they never make it into his mouth. I know it’s good for his manual dexterity to work on picking them up, so we continue giving them to him, he continues working on those fine motor skills and I just vacuum food off the floor at least once a day.
At the feeding clinic he was assessed by four professionals: a nurse practitioner, a dietician, an occupational therapist and a speech therapist. The dietician’s visit was the shortest: she declared that he would continue to get his nutrition needs met on his formula and suggested making it more concentrated so that he was getting more calories in less volume during the day, and making it super-concentrated right before bed in order to eliminate night wakings to feed. And if he did wake up overnight, I am to give him water.
The nurse practitioner went one step further and told me to ignore him when he woke up at night, and let him “self-soothe” (read: cry himself back to sleep). Although I have recently suggested that my crunchy parenting card should be taken away for my lack of adherence to some of the fundamental practices of attachment parenting (namely breastfeeding and baby-wearing), I cannot abide the cry-it-out theory of putting a baby to sleep. For one, I don’t think it’s good for babies. For two, we live in a small house and if I let E cry himself back to sleep, the entire household would be wide awake. The nurse practitioner told me that if he had been in his own room all this time instead of a crib next to my bed, he would have learned how to put himself back to sleep. Obviously she did not understand what I meant when I said “we have a small house” even when I added “we have only two bedrooms” and she knows that there are four of us in the family, nor does she know that the AAP says that “the safest place for your baby to sleep is in the room where you sleep”.
I know that it can be a long road to sleeping through the night and even though exhaustion from getting up as many as four times a night to soothe the crying baby frequently clouds my mind, I’m pretty clear on the fact that letting my kid cry himself back to sleep is not acceptable to our family. I was very, very close to saying “hey! Did I take a wrong turn in the hallway and accidentally step into the sleep clinic? What gives?” – but I silenced that snark and just flatly told her that E doesn’t “self-soothe” and letting him cry until he falls back to sleep is not an option for our family. I suppose that was nicer.
The OT rubbed him with lotion and tried getting into his mouth with a Nuk brush. Not so much in love with that. She then introduced to him a crazy vibrating crocodile on a stick. Fun to touch, but not welcome on the face or in the mouth. She and the speech therapist tried to feed him a variety of foods: applesauce, a bean soup which I had brought that he had happily snaffled up at lunch a week before* and – here the blue ribbon healthy food choice: pureed Kraft Easy-Mac (you know, microwaveable pre-made mac and cheese) and neon orange cheesy poofs! I was kind of proud of the face that he made at the Easy-Mac (it sort of said “what the hell is this?”), and, as is his m.o. with all finger foods, he picked up the cheesy poofs, looked at them and then threw them on the floor with an air of great dismissal.
moooooooom, bring me some cheesy poofs!
*the bean soup: I make a 5-bean + lentil soup every now and then, probably from now on far more ‘then’ than ‘now’ since I’m the only one in the family who will eat it and I end up giving at least half of it to friends because I get so sick of eating it for lunch every day. Anyway, it’s not baby food: fry an entire onion in bacon grease, add loads of water and all of the beans, cook for a long time, add a chopped carrot, some lentils, a large spoonful of minced garlic, spices to taste… 4 hours later or so you’ve got a delicious soup. At least I think so. I had a friend over and we were chatting after eating our soup, E in his high chair, and I absentmindedly put a spoonful of soup “broth” (thick, beany, bacony deliciousness) in his mouth and… he liked it! Hey Mikey! And he proceeded to eat – by his standards – a LOT of it. With enjoyment and leaning forward toward the spoon with an open mouth.
He, of course, has not repeated this behavior since. We figure it was a perfect alignment of the stars, the moon being in just the right phase, the weather being perfect, him being at just the right stage of wakefulness and hunger and the fact that my friend fed it to him.
So… the final word of the day, 2 hours after we arrived and me with a cranky, tired baby: E needs more OT and PT, because gross motor development corresponds to oral motor development. Once a month of each is NOT enough. Weekly!
We also went to a local NP who specializes in kids with developmental differences for a once-a-year check-in to make sure we have all of the Ds health bases covered, and she said the same thing. More occupational, physical and speech therapy. Private. The school system is not providing enough.
When I came home from the feeding clinic with a blissfully sleeping baby, I was depressed. I was depressed all day. My overarching question was: how much therapy does a child need to be successful? Truly successful? What is successful? Is successful being at age level for development? Is anything less considered unacceptable and call for more therapy? Does all play need to be therapeutic in order to meet all of those goals on the Hawaii Early Learning Profile? Free play time is obviously NOT okay.
Where is the balance? When do I get to say “no, I am sick of driving this kid to all of these appointments, I am tired of his naps being interrupted, I am weary of begging friends to care for my older one while you piss off my baby trying to get him to do things that he is not ready or willing to do”? Doesn’t it count that I see my child making progress on his own, even when no one is pushing him ahead? Amazingly, when we miss “intervention” (HATE THAT WORD) sessions because of sickness or other obligations, his teachers come back 2 weeks later and say “wow, he’s doing so many new things!”, sounding slightly incredulous, as if he couldn’t make any progress on his own, without their assistance or supervision.
And here, the thing that is giving me the most pause: yesterday our school OT S. came over. She comes once a month. I like her a lot. I think E does too. She is respectful of him, she is gentle, she never forces him to keep going when he obviously needs a break. If something is too much or too scary to him, she backs off for a little while and tries again later. We call her “Magic S.” because every time she works with him, he does something new and incredible either the same or the next day. For example: he started belly-crawling within an hour of one of her visits, and after she worked with him on a couch cushion, moving from sitting to supported kneeling and then back into sitting, he pushed himself into a seated position from hands and knees the very next day. She watched him getting into hands and knees and rocking, doing his belly crawling, coming back into sitting so easily and proclaimed him amazing. “He does so much. He’s going to go so far. You do all the right things for him. You have all the right toys.” But she’s not one of those enablers who only says positive things in order to make someone feel good about oneself. She has worked with hundreds of children with Down syndrome and I think she has an idea of what she’s talking about. She watched E place a ball at the top of a ball run, release it, watch it all the way down and then clap when it got to the bottom, and said (literally, agape): “OH. MY. GOSH.” – because, she told me, she has worked long and hard with so many children to get them to just release the ball from their hands, much less put the ball where it belongs, let it go, watch it make its way to the bottom and then applaud. When I told her what all of these medical professionals have been telling us about him needing so much more therapy, she agreed with adding some OT with a focus on feeding, but pointed out that they are all coming from a medical model of “if it isn’t perfect, then it’s broken, and must be fixed”. i.e., because he’s not at age level development, it’s not right and it needs to be worked at until it is.
She pointed out to me that E is constantly making progress. He has never plateaued – he keeps moving on. He makes his progress at a slower rate than his typically-developing agemates, but he is constantly making progress. We are all aware that his development is going to be slower and no amount of therapy is going to change that fact. Nothing is going to ‘click’ one day in a PT session and voila, suddenly he can do everything that his un-genetically-enhanced friends can do.
He is successful. He is happy. He is making progress. He is tenacious, opinionated, charming, feisty, stubborn and lovable. Is that enough? Can’t that be enough?
suet in Minneapolis? December 11, 2009
hey! whoever navigated here looking for where to get beef suet in Minneapolis: Everett’s! 38th and Cedar!
our apologies as we experience a brief pause. December 11, 2009
Intelligent words are brewing. I’m trying to discern what I think about the medical profession’s cry for more-more-MORE! therapy (OT and PT and ST) for E, Christmas is looming, NO PRESENTS HAVE BEEN ORDERED YET (gah!), it has snowed and gotten wicked cold – you know it’s cold when T’s school keeps the kids indoors – and I’m enjoying this eggnog latte I made myself far too much to set it down and write a decent blog entry. But it’s coming. As soon as I clean off the dining room table and put the nice snowflake tablecloth on it.
In the meantime, I would love to know who is actually reading this blog regularly enough that I get 20+ hits a day – I know that’s nothing compared to a lot of bloggers, but to me, 20some people actually reading what I write? Daily? AWESOME – so if you want to check in and tell us the most wonderful thing you have experienced this week, I will put your name in a hat and draw one name out next Friday, December 18. The winner will receive a chocolate bar of her or his choice from local chocolatier B.T. McElrath. No one is disqualified, so local people who live down the street or hang out with me regularly or sit in the same pew at church as I do – weigh in!
I’ll start by saying that my heart was filled to brimming and then overflowed, spilling a metaphorical puddle of happiness all over the floor at school, while listening to the 8th graders at school sing a beautiful Christmas song in 4-part harmony (8th grade boys singing bass – yipes! – ) in the atrium, watching their teacher lead them in song and knowing that THAT amazing teacher is likely going to be T’s class teacher. For one: the atrium has amazing acoustics. For two: the kids have amazing voices. For three: the teacher loves singing and music and it has so clearly rubbed off on his students. Oh. So. much. awesomeness.
What’s your story? C’mon, you know you want chocolate and we all need to read happy stories right now to give us some buoyancy in the sea of holiday preparations and hubbub, which can get terribly busy and often stressful.
good riddance to november December 1, 2009
November, you may go away now.
H1N1 for me, Jo and T. (None for E. Thankful for that.) My flu faded into a sinus infection. T’s is starting to act the same way. Hoping to get rid of his before antibiotics are needed.
Redundant scrotal infections for E. 2 different kinds of antibiotics. Nasty procedure called a VCUG (thankfully came back totally clear). Most recent case of swelling turned into a totally yucky abscess which suppurated on Thanksgiving. (Said suppuration actually made baby VERY HAPPY.) This issue is going to carry into December but it is on the horizon of being resolved.
E’s eardrums are pretty flat – not moving much when sound waves are coming at them which indicates probable fluid behind the ears. Grr. Trying so hard to avoid tubes.
MOVING ON TO DECEMBER and trying to focus on the beauty of the season, the excitement of my elder son, the megawatt smile of my younger and how much I love my wife. Working on keeping us all healthy.
