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:
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
We felt her pain and brought a few plastic medals (two for Noa and a few more for any other riders who needed them) and that seemed to satisfy her in the moment, though she did ask for a couple of her heavier real medals when we got home. They just make better noise.
In spite of the lack of medals, we all enjoy socially distant setting. It gives us a chance to commune to with the other riders and families at Noa's stable. Noa enjoyed the picnic lunch after (and wanted to know and spell everyone's name), and especially enjoyed a foot-push swing they have on the premises.
Noa seemed to really enjoy having her special riding cloths on (she helped to button some of the buttons on her shirt), and when we got home she refused to take her outfit off until after going out on her stroller ride. Of course, wore the medals all night, to bed and then to Potter on Sunday. She informed me that she wanted to put them on her walker at school.
It’s probably no surprise that Noa enjoyed her August vacation. Nor is it surprising that she’s excited about going back to school and back to Potter Cottage.
Noa was VERY interested in being able to maneuver around the house more independently over break. She used to insist that she walk with Mommy or Daddy in the house, but over break mostly insisted on walking either with her walker or by herself.
Even with the walker, she’d insist that we give her verbal directions and not touch the walker. When standing up from sitting on the floor, she didn’t even want us in the room. She also figured out – on her own – how to get off the floor after yoga by using the couch. She can also get from the sofa or her bed to the floor on her own. She’s getting much better at crawling as well – so once she gets on the floor she can crawl to where we’re going to play or engage in an activity.
Despite her push for independence and an ever-increase more proactively expressing herself, we faced some rather long stand-offs (especially toward the end of the month) in which we knew what Noa didn’t want, but had a hard time getting her to tell us what she wanted (even when she seemed to know what she wanted, she would fall back on chains of vaguely frustrated signs that didn’t communicate anything – for example, “red, blue, pink, purple, music, shapes, orange”).
While this is very much typical Noa behavior (at home anyway), it seemed very much at odds with her desire to be more independent. Interestingly, these struggles seem to happen most often after she’s had a negative response to something we’ve suggested, offered, or even just mentioned.
A new phrase that Noa really enjoyed over break is “bye-bye, see you NEVER.” This started with me wanted to differentiate between things that we will see later, and things that go in the trash (you’ll see tissues again, but not this tissue). She really seems to think it’s fun to say and seems to get the idea of it. Before coming back to school, we sorted her toys into bins for: “home,” “school,” and “never.”
Noa asked us to spell things for a lot over break, especially names of foods.
Our struggles with applying deodorant continue. At home she will only allow a very expensive hand lotion to be used on her underarms. It’s not effective as a deodorant. We understand she has a bit more flexibility with this at Potter.
Noa will very rarely allow us to treat the ongoing build up in her ears (I think we got three chances to treat it over of the entire month).
Noa had two doctor visits over break: one with the dentist, one with her GP for her annual physical.
While it took quite a lot of in-office negotiating and bit of hand biting (after having already spent 24 hours preparing for the scenario at home), when Noa did finally consent to 4 sets of 10 second sessions she did great and was a rockstar. The dentist did mention that her gums were somewhat red and sensitive because her current brushing doesn’t get to the gum lines on top and bottom. He wasn’t concerned but suggested it was something to work on.
Noa also did remarkably well at the GP, in great part because Noa was very clear ahead of time about what she would and wouldn’t allow, and we were able to respect that. She had a list (which we listened to repeatedly for 24 hours): chest, back, head, nose, mouth, ear, ear, finger (for oxygen), tummy, hand, hand, then “finished, see you in one year.” She expressly (and very politely) requested “no arms please.” She also wanted to wear long sleeves (one of the few battles we won). Also, no legs, knees or feet.
Usually at the doctor’s office we have to keep her wheelchair moving the whole time or she starts complaining, but she stayed very calm this time (she did have the zuzzies going) and just constantly repeated her list of things we could examine for “10” and then “finished, see you next year.” After about 20 minutes going over medical history stuff, Noa seemed to be losing it a bit so we asked if we could move on to the exam, which we did with Noa instructing the doctor what should come next.
While we lucked out by not having to do a shot – which would have broken the “no arms” rule – it was great to have two positive doctor experiences and Noa really seemed to appreciate the fact that her wishes were respected. Full disclosure: Noa did bite Mommy on the arm at the GP (she may have been trying to bite her own hand, but once she realized it wasn’t her hand… she didn’t exactly hold back).
This blog is managed by Noa's Mommy, with editorial support from Noa's Daddy.