Sunday started with a bit of a challenge as the snow made her usual stroller ride impossible. But she ultimately agreed to a special time in her "Noa Chair" with drums and zuzzies and Bo together. This was so much fun, that she decided that she should have her drum on the swing as well.
 While having drums and zuzzies on the swing was fun, it was also a bit challenging to keep the zuzzies on her ears while also spinning and drumming, we added a hat to hold the zuzzies in place. Then, after swings she had a Zoom call with Aunt Pate and totally on her own remembered to thank her for a cool new apron (with a new kind of neckband that clicks together) and a new pair of blue socks. Noa was excited to go to school so she could celebrate the rest of her birthday with cottage and school friends. She's also excited about vacation in one week when she plans to go shopping.
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INDEPENDENT NOA Noa has gotten very good at toileting independently at home. This includes putting on gloves before wiping after a BM, flushing and closing the toilet. One day, in a startling move, Noa decided completely on her own to get up from the floor (using her walker) and make her way to the bathroom and use the T before coming downstairs for dinner. She did this completely on her own! The next day she told me that after finishing braille she wanted to go to the bathroom by herself and then return to her room to clean up her blocks. She got a bit turned around when she came out of the bathroom and ended up in Mom and Dad’s bedroom. But the next day we worked on the best way to turn the walker around and she was very happy. Noa also expressed an interest nail care and has gotten particularly good at filing her nails. WATER IN, WATER OUT Noa greatly increased her water intake over break (in part because she seems to have gotten over wanting only super hot water). While we were glad to have her hydrating herself, she tending to drink too much water near bedtime and thus had a few accidents. We will work on reducing her late in the day intake.  Noa shows off her many bells WALKING WITH MUSIC Noa spent a lot of time perfecting her ability to “walk with music.” This included twelve bells attached to various barrettes (which ultimately had to be anchored with back up barrettes so that one could jump without the bells slipping out of her hair). She also insisted on big bells on her shoes, and a variety of rattles in her pockets. Noa asked for new shapes and was very excited to discover her new shapes were also rattles! To keep the rattles in her pockets, she would only agree to wear shorts with deep pockets. At night she would wear shorts with zippered pockets to keep the rattles in place… until one day she realized that she could ask for shorts with zippered pockets during the day. We were impressed with the fact that she thought asking for the zipper pants herself - yet another great step forward in expressing herself and self-advocating.
GREAT WOLF LODGE Noa had a wonderful time at Great Wolf Lodge. She was very glad that Christian was there and we had most of our meals with him and his family. She was especially excited to hug friends and tell them that she loves them. Noa liked jumping up and down in the wave pool, but really enjoyed the pool called “Crooked Creek” in which you float around a circle in an innertube. The water was shallow enough that she could stand up in the innertube (which had handles) and walk around the circle independently. She also loved sitting in the innertube and floating, and liked to finish up by having Mom spin her around in the inner tube. Noa did great staying the hotel, she understood that things would be a little different, was patient with and interested in the new setting and agreeable when we had to get out of the water, though she didn’t like waiting for the elevator.
THE CHALLENGES FOOD – we continue to struggle with conversations around food, though after weeks of very vocal dissatisfaction with breakfast we finally figured out that what Noa wanted was eggs WITHOUT cheese and potatoes (rather than eggs with MORE cheese and potatoes). Still, she tends to act out when she doesn’t like something or wants more of something. She bent several spoons in frustration over break and also tends to make sounds and talk about colors or shapes when we try to talk to her about what she wants. THE TALK – Noa doesn’t like when Mom and Dad talk to each other. Especially during mealtime. We try to include her in conversations, but when it’s clear we’re having an exchange with each other (even a short one) she’ll often bite her hand or act out in some way. We have talked about the fact that everyone can talk to each other, but this continues to be a challenge.
All in all, a great break though Noa is also very happy to return to school.
 Noa hangs out with Grammy Noa had a fun and fabulous Winter Break! Break started with a LONG drive to Maryland to stay in an AirBnB vacation house near Grammy, Aunt Pate, Uncle Jamie (who burps) and cousins Aidan, Electra and Petra. Noa adjusted well to the different space and seemed to really enjoy reading braille gift tags, giving gifts to appropriate recipients, and opening gifts addressed to her. She especially enjoyed getting gifts she'd specifically asked for:  Noa enjoys the long drive.
 Above: Noa shows off her outside purple gloves after Mom made them "better" by attaching blue sleeves that make the gloves go up to her elbows. Below: The full ensemble including wristbands with bells, scarf and hat with stars. She is also wearing a new pair of soft pants. 
As much as Noa enjoyed staying in a new house, she was very glad to get home where she enjoyed her usual home activities: braille, reading books, stroller, spinning chair, treadmill, shopping and getting a haircut. She actually also decided that she wanted to do yoga in the morning before breakfast. For yoga she wanted to wear "different" shoes (shoes with stars), and then put on shoes with braces and a soft sweater) after yoga. Noa especially enjoys doing her own "woo-woos" - which is something she's been working on for a long time. It's been a while, but Noa had a really great weekend and I got some great video of her on horseback, so here I am! Noa has been working to increase her independence and communication while riding. So this week, Noa's coach Auntie M put a bell on one of the horse's hooves so she could count his steps and then use that information to guide the horse - for example: take five steps and then stop. This turned out to be a genius idea because Noa has been obsessed with bells lately (she has them sewn onto hats, her shoes, wristbands, her coat and bracelets! The video below follows the trajectory of her learning how to do this - all in just one half hour session! You may hear extra bells - as a Christmas gift, Noa had made rhythms beads, with bells, for Aunt M's horses Evan and Crane. So Evan is wearing other bells - but they sound different from the bell is actually on Evan's hoof. That's what Noa is listening for.
Above left: Noa making rhythm beads for Evan. Above right: Evan wears the beads that Noa made for him.
 Noa kept herself - and all of us - busy this August! As usual, she loved Literacy Camp! Noa enjoyed entertaining visitors: Aunt Pate from MD, and family friends from NY. She had fun at a birthday party for a family friend in spite of a rather unfortunate (and lengthy) Happy Birthday Song meltdown. They started singing without warning - maybe that was what set her off? Luckily she found a nice young man whose shoulder she could cry on and when it was over (2 hours later) she bounced back as if it had never happened with happy jumping and hugs. She even gave Mom and Dad a break by doing a respite weekend at Visions for Creative Housing in Enfield, NH.
 Amazing progress was made at horseback riding! Noa has started riding independently (without her coach holding onto the lead.) This is especially impressive as it means that she has to kick the horse occasionally to keep him moving (something that is particularly challenging for her). Thanks to stretching sessions before leaving the house, her posture and leg position have much improved. When she is finishes with horsey, she asks for "proud clapping" and we are very glad to comply. Over the summer, she worked on posting up and down, and this past weekend she trotted for the first time!
Noa's newest friend is "1-2-3 Stars with Nick Monkey!" The phrase 1-2-3 Stars with Nick is one she has enjoyed saying since she moved to Bradlee Cottage (where she met Nick) just before break. Since she'd names another monkey after James, I asked her if she wanted to name another one of her monkeys after Nick. She said yes, but when I gave her the monkey she handed him back and told me that he should have stars on his ears. So... I did that and this is how all that played out...
Noa has been very focused on increasing independence. Taking a cue from the folks at her cottage, I got a small rolling cart for Noa's toiletries that we keep in the bathroom. In the top drawer she has her hair products, the middle drawer has diapers (for nighttime) and the bottom drawer has her slippers for after bath time. When it's time to get dressed, I lay her cloths for the day on top of the drawer. She has a special bucket that she can put her shoes and braces in at night and she takes them out in the morning to put them on. She seems to enjoy being able to do nearly all of her getting dressed/undressed routine on her own! She also does most of her toothbrushing routine on her own now (including rinsing the toothbrush and putting it away in a cup). She has also been getting around the house more independently and figuring new path from place to place on her own. She can now get from the floor, onto the couch and from there to the stairs or the table or the bathroom or the basement.
One morning she told me she wanted to do woo-woos with different shoes (without braces) and put on braces later. I think she figured that she could sit up taller without the braces (which is probably true) but it turns out she needed the extra weight of the braces on her feet to get all the way on her own. Still, we very were impressed with her thought process and her ability communicate what she wanted to try.
 Am I saving the best for last? Hard to tell... but it's awfully cute! One of the books Noa likes to read with Mommy right now is "A Pocket for Corduroy" which ends with Corduroy and Lisa nuzzling noses. One day, showed her what it meant to nuzzle noses and that so nuzzling noses became a regular part of reading that book. Still, when she decided (without the book and in a totally different setting) to nuzzle noses with 1-2-3 Stars with Nick Monkey, it took me a moment to figure out what she was doing. "Are you nuzzling noses with 1-2-3 Stars with Nick Monkey?" I asked. Clearly the answer was yes. As you can see, nuzzling noses has become a "thing" and she figured out how to take into day to day life all on her own! Bonus Summer Photos
Noa likes to turn right, so imagine my surprise when decided to turn left at the top of the basement stairs today! I'd set myself up to video her turning right and then reaching across the hall with her back to me, but this video is even better it shows Noa figuring it out with a bit of side coaching from Mommy, and she did it! Recently Noa figured out how to stand up from the floor in her room, and make her way to the stair, without using her walker... but we've never been sure how she does it. So I staked her out quietly this weekend and finally caught the big moment. At one point, you'll see that she bonks her head on the floor. As it happens, Ben happened to come home in the middle of this effort and she heard him downstairs and, I think, wanted him to come up. I'm also including a short video from a couple of weeks ago that shows Noa (after standing up with her walker, finding her way to her bedroom door and to the stairs to go down to dinner.
 
Sunday we went apple picking, which was also great fun. She really enjoyed picking apples and putting them in the bag. The hayride was also great fun - and the fact that it was also a windy day made it even better as far as Noa was concerned!
The experience this week was quite similar and leads us to believe that we may need to work with someone(s) to come up with a meaningful strategy for helping Noa process these situations. It would be a shame if it meant not being able to go live events because she enjoys them so much. The setting was the open house for Visions Center for Creative Housing (Ben's work), where Noa has been several times, has friends and enjoys a variety of swings. The open house included a rock band that was (to Mommy's mind anyway) way too loud, but of course Noa loved it. We were there for a few lovely hours and Noa had a great time. The problem arose when the band wrapped up and it was time to go. She became obsessed with talking about her ears, asking for more music and swings and then getting frustrated, asking for zuzzies but then hating them, some head slapping, hand biting, etc. Everything was just bad or at the very least unsatisfactory. About 20 minutes into the car ride home she calmed down (mainly because we were on the highway with the window open) but once we were home it all started up again - though a bit more weepy then lashing out anger. It just seemed like nothing was right. The fact that Noa's much beloved zuzzies are on death's door doesn't help. We're trying to transition to new ones. We hope that the return to school will serves as a bit of a reset!
While we were impressed, and more than a little terrified, to discover that she was looking for the stairs on her own, we know that this is an area of the house that is very familiar to her. But we were really surprised that she'd crawled around the room enough to find her walker - which we thought was beyond her desire to explore on her own. Noa really seemed to enjoy getting around on her own as much as possible over break (both with her walker and crawling on the floor). She can get from her bed to the floor on her own, and from the couch to the floor as well. Braille Like A Boss
Play Ball...
 Doctor, Doctor!
 Noa chills with Mommy, Daddy and Congresswoman Annie Kuster.  Noa enjoys the pool at Visions with her special friend Ashley and Daddy.  Noa loves the hammock swing at Visions for Creative Housing. |
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September 2021
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