In the spring and early summer, Noa enjoyed spending time on her treadmill. She would usually spend about 20 minutes on the treadmill with Daddy. Later in the summer, Noa shifted her focus to a stationary bike that, until then, she couldn't really reach the pedals on. At first she struggled to turn the pedals smoothly but in recent weeks - with the help of some upbeat music - seemed to get the hang of it.
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As some of you know, we inexplicably misplaced Blue Green Yellow Doggy. It has to be somewhere in the house, and yet it’s location remains a mystery.
She has now accepted, as a replacement, the Doggy formerly known as Blue Doggy (or Doggy #2). I colored his nose yellow and his tail and mane green with a permanent marker. This doggy goes by the name: Greentail Doggy. In recent days, Noa has spent a lot of time asking me to confirm the doggy’s colors for her: Nose Yellow, Tail Green, Body Blue. We do not mention Blue Green Yellow Doggy. Noa and Mommy have been doing yoga everyday, in fact it's become a favorite part of the day for Noa. I filmed the whole routine I do with her because it's one that we seem to have created ourselves - a combination of stretches, yoga moves she already knew and moves that I added in response to the kinds of movements Noa seemed to be interested in being able to do (twisting her upper torso, ankle flexibility and opening up her hips.) The whole routine takes a little over 20 minutes. The video is in three parts. I've also included a few bonus videos. PART ONE - leg stretches Basic leg stretches (with the alternate leg straight and bent), some hip flexibility, ankle stretches and circles I do a bit of massage mainly on her lower legs and ankles as they tend to get especially tight.) PART TWO - back and twisting I for these stretches, I try to focus on getting Noa sit up and twist with her legs in various positions. She really seems to like moves where we have some give and take. Just after these moves, she adds in a few of her own which she does on ocassion. In the past few days she's started to add arm circles (which she likes from APE class with Matt) The final set of twisting moves are especially challening. While Noa's form may be lacking, she seems to understand what we're going for and she is really commited to the move. PART THREE - bonus moves In this first part of this Noa does one of her favorite moves called "Noa is a woo-woo chair." The woo-woo chair is a rocking gaming chair that that allows Noa to rock all the way onto her back. Noa loves it and seems to understand what she needs to do to rock back and forth this way, but can't quite get the momentum going to do the move entirely on her own. Sorry about the angle for the final set of moves, but these are nice both because they are moves that the two of us do in unison (which she really likes) and because she is able to move from one move to the next smoothly. TWO BONUS CLIPS The two clips below show Noa doing Happy Baby (a move that she particularly enjoys) and from this angle you can see what she is doing. Also a different angle on the moves we do in unison. She tends to round her back in the Cobra position, but if I reminder her with with a light touch on the back she does just to relax that. One of the most exciting developments has been Noa's desire to be independent, to do things, as she says, "self." She will also sign "self" though it oten looks more like "ten." Noa has been very interested in getting around the house by herself. Noa likes to go up and down the stairs on her own. She is able to cross from the top of the stairs to (and from the bathroom), and likes us to set up her walker so she can walk from the bathroom to bed (and from bed to the bathroom in the morning.) She is interested in trying to get around on her own, and is doing great with understanding her left and right. She also now dresses herself (which we know she's done at school for a while, but she hasn't wanted to do at home) and has shown an on and off again interest in wiping herself. Sometimes, if she wants to pull up her pants using both hands, she will lean her head against my chest so she can bend down. She also sometimes wants to stand on her own - for example standing up from the potty on her own - but sometimes really wants to walk on her own someplace where there isn't anything secure for her to hold on to. She's been using the walker more at home, though there isn't much space for walking more than one or two steps. She has also been interested in going out in her red wheelchair and pushing herself around – she will turn left or right if we ask her to.
Going on a walk in the stroller is one of Noa's favorite events and one she insists on daily (and mourns the loss of when it rains) but the unwillingness to get her out of the stroller at the end of a walk has become a significant and limiting issue for us. These stroller stand-offs can last over an hour, often feature tears, hand-biting, attempts to hit or kick at us, some very animalistic growling. Often Noa will do attempt so do some stretches in the midst of this, though there isn't room to do these stretches in the stroller. She will also do what looks like an ASL sign, though we have no idea what it is. It looks like someone putting on a hat with the letter "c." She seems to be quite convinced it means something, we asked a few folks during Literacy Camp but no one recognized it. As with most Noa meltdowns, her behaviors seem to be more about communicating frustration than communicating a specific need. These stand offs often end with Noa needing hugs with Mommy for quite a while, some time sitting with Mommy, or on Mommy's lap (example of Noa trying to fit on Mommy's lap below.) We had one day this past week in which we got up, had breakfast, went on a walk, had a meltdown and by the time she'd recovered and it was ready for lunch is was after 5pm.
We have tried waiting out these spells. Giving her 5 minutes, then coming back again to see if she'll stand up. On the weekends this works fine, but when Mommy and Daddy also have to work and show up for other people it's a problem, especially if (as in the video above) we've gone walking on a rail trail so we're in a parking lot. We'd be glad for any support on figuring out how to deal with this kind of issue. Though Noa continues to do well during the day, we’ve been using a double diaper at night.
Sometimes Noa will get up for a late night potty break (between 11pm and midnight, but sometime she won’t. And frankly, Mommy and Daddy needed to get some sleep. This is definitely an area where we've lost ground. A couple of months ago we started to time meals with Noa. Meals were getting so long that they seemed to take up most of the day. We generally set the timer for 30 minutes but she still manages to stretch things out quite a bit with multiple requests for “one more bite.”
Recently Noa began purposely letting food drop on the floor. She finds this very entertaining, despite the fact that we've repeatedly tried to expressed that this is not funny and does not entertain us in the least. For most of the spring and summer we were successful in getting Noa to wear shoes with braces most days, especially if we were going to do something like APE or treadmill or PT, for which we could make a solid case. August did not fare as well and she may have only worn them a couple of times during August.
She still seems to have a red mark across the top of each foot from a favorite pair or Mary Jane style shoes. She just kept pulling them tighter and tighter until they left that mark (more than a week ago.) We sent a part of no-braces shoes to use as slippers. Over the summer, Noa actually wore shorts and tshirt nearly every day until she discovered dresses with pockets (which she wears with running shorts underneath.) She doesn’t always demand socks, but when she does they much be long! Of course, she continues to prefer long pants with long shirts but we’ve been glad to see her more flexible with the types of clothing she will wear. She has learned to enjoy pockets. She has been less flexible with colors. But she tends to do better with other people than she does with Mom and Dad when it comes to color. She seems to want as many colors as possible for most things (which explains the leggings we’re sending back with her.) At home she wears the leggings mainly for sleeping. As you may notice, she is still quite attached to her scarves. They now have plastic shapes on on one end (the end that also has a white tag) and will tell us she wants to put the "tags on the floor" - which basically means she wants to fling the scarves so that the plastic shapes make noise when they hit the floor (or anything in their way.)
As you will doubtless discover upon Noa's return to campus, she has regressed considerably in her behavior. Kind of a Terrible Twos Tyranical Teen.
As this has occurred on our watch, it's evident that Jeni and I have not been able to figure out how to work effectively with Noa to on her behavioral issues. We need help! Some of the challenges arise in situations in which she has previously struggled, made progress, and now regressed (i.e. in transitions). Some of the behavior is new and seems age-appropriate in the unpleasant sense (i.e. defiance, getting a kick out of engaging in negative behaviors, like food "falling" on the floor). And of most concern to us, some of the behavior reflects what comes across as the absence of some essential core values (empathy, kindness, care for others). We are especially concerned that this difficulty increases the unrelenting nature of her demands and make it impossible for her to develop and sustain meaningful relationships with peers or caregivers. |
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September 2021
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