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Special Olympian!

9/20/2021

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Our big event this weekend was the Special Olympics on Saturday. Noa had a great time and demonstrated her best horsewomanship ever! One key to this seemed to be the leg stretches we did while waiting for Noa's turn to ride. It completely transformed her leg position and her posture! 
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For the socially distanced Special Olympics, riders are video-taped and the judges look a the tapes later - so there are no medals on the day of the event.... Noa was not in favor of this policy. In fact, this year she seemed to be espcially interested in getting her "necklace" after doing "Special Horsey."
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. 
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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.
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Summer Vacay Recap

9/8/2021

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​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. 
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ACTIVITIES
Noa especially enjoying going on a couple of tandem bike adventures with Daddy. Due to scheduling conflicts in accessing tandem bikes, Noa had the opportunity to join a group of disabled Vets on her biking jaunts this summer. This group turned out to be a good match for Noa’s outgoing personality.
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A new activity this summer has been “riding Daddy like a horse” – a form of piggyback riding where Noa is supported by a seat on a backpack and stirrups. From the first “ride” she was applying her horseback riding chops, telling Daddy to turn left, turn right and go straight just as she would when horseback riding – in fact, this is one of her favorite parts of this activity. She will also sometime ask for headphones and music during these rides.  From their shared vantage point, Noa and Dad explored different shaped leaves and pine needles together. 
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Noa also enjoyed Literacy Camp, weekend horseback riding sessions and a few visits from her old friend Renee. Other than that, it was Mommy, Daddy, Noa together on staycation with lots of long outings in blue stroller (daddy jogging), shopping with red stroller (esp. when it was too hot and/or raining), spinning swing, braille, reading on the couch, treadmill, and yoga with meditation. Hugs and kisses with Doggy and two bye-byes with Electra Monkey slowly snuck into the routine of nearly every transition. There were times when she clearly had to go to the bathroom urgently but insisted on making sure Electra Monkey’s hands were facing just the right direction, and her arms where not twisted, before waving bye-bye.
INDEPENDENCE

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.
​She’s also figuring out how to get herself out of the upstairs bathroom and down to the dining table or to the couch on her own, and how to get from standing up with the walker in her bedroom to the stairs. 
PictureThe most interesting thing about going to the Zoo, in Noa's opinion, was the train ride.
COMMUNICATION

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. 

HYGIENE

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).

DOCTOR VISITS


​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).
MISC.
Over break we got Noa headphones that are imbedded in a headband and connect by Bluetooth with an mp3 player. She seems to like it and we hope that this may be able to take the place of zuzzies sometimes. She seems to really like “mediation music.”  ​
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Biking Fun!

6/13/2021

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Noa had a great time today at the NEC biking event in Lebanon, NH and it was an extra bonus surprise that her ol' buddy and pal Lily was there. 

Noa was so excited to be reunited with Lily - in fact, we'd never seen anything quite like it. When she realized she was saying hello to Lily, she got so excited that she turned around and gave me (Mommy) the most excited, jumping, squealing hug. It was like a thank you for a surprise gift. Of course, the whole thing was a complete surprise to us too but I didn't mind getting a big hug for it! 
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Even though we only spent about an hour at the event, it was about a day's worth of excitement.
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Spring Time

5/2/2021

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As folks may have noticed, Noa seems to be fascinated with jewelry lately. This weekend she decided she wanted earrings. We had quite a bit of back and forth in which she made it clear that she wanted the earrings ON her ears (not something - like medicine) in her ears. Like mommy. 
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I told I would give her earrings in the afternoon. I said this thinking we must have some old clip-on earrings somewhere. We did not. After failed attempts to find clip on earrings at Goodwill and Walmart, we had success at a nearby outdoor mall. We hoped to get Noa engaged in selecting and buying the earrings which she was not interested. On the plus side, she was very patient with the entire process was even agreed to wear a mask the whole time we were out and about. She really wanted those earrings.

Once we got home, she was thrilled  to wear a part of purple fluffy earrings on her spinning swing for about 25 minutes, after which she decided they would be better on Electra Monkey.

Noa was also glad that I put tags on her underwear (like she has at school) but wanted them to be right next to the seam, so I promised to fix them before the next day. In short, she got some very clear ideas about how she wants things to be and she's been very patient in explaining these things to me.

Noa was excited that we'd moved the hammock outside. She usually wants to have her zuzzies on the hammock, but this weekend decided to make "Monkey Music" instead. It was great fun, even if it did look a bit like she was choking poor Monkey.
Noa has also enjoyed using her pockets to carry selected items around during the day, and taking things out of the drawer of her new bedside table. She's also been enjoying doing things by herself (standing up from the floor, playing piano, writing braille.) As soon as she has everything she needs, she waves us off with a "bye bye Mommy" or "bye bye Daddy." 
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Easter Styling!

4/4/2021

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Noa continued her adventures independence this weekend.

Noa enjoyed the gift of a new bed this weekend, which allowed us to rearrange things so that the path from the bathroom to bed, and bed to her dresser, are easier to navigate. She also now has a real bedside table with a drawer. 

Noa was very happy to pick her clothes this weekend and was especially pleased with her Easter outfit (pictured here.)

We also set up her piano in a new space which (unintentionally) made it possible for her to reach her bucket of out-of-circulation monkeys which included 10 monkeys and she told me where all of them should go (this one at the table, this one in bed, this one in the hammock.)  
Noa continues to like standing up with her walker. On Saturday, I asked her if she wanted to stand up by herself or with me. She replied, "self" and then added "Soon. Bye-bye Mommy." She was very proud to stand up and turn herself around, and get herself from her room to the walker to the stair to dinner almost by herself.

​All in all a great weekend.
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AMAZING MOVES

3/21/2021

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So, after last week's big surprise, I spied on Noa's room cleaning activities to see if I might be able to catch the lady in action... and I did! It's pretty exciting, if I do say so myself!!

The video is a bit long (even with a break in the middle). I started when she first reached in the direction of the walker. I just put it where it had been the week before. Towards the middle of the video, she realized she still had a few toys to pick up and I was afraid my camera might run out of space so I paused filming until she seemed to finish with that. 

I figured I'd include the full video here because I think the moves leading up to standing are also interesting. 
In other news, Noa had a quiet but fun weekend. Since she had her COVID shot on Friday and it was that time of the month, we just figured we'd take it easy and that seemed to work fine for everyone. She seemed to be a bit tired Saturday but other than that no real reaction to the second shot.
She was very glad to be able to do her spinning swing outside in the nice weather.
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Weekend Surprise!

3/14/2021

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Noa had a great weekend at home, which included a bunch of signs that we don't understand and a surprising and very exciting development!
The new signs started a couple of weeks ago - but this weekend there just seemed to be more. Maybe they will make sense to someone at Perkins? Sometimes, a sign will seem familiar, but the context doesn't quite make sense.
Now for the amazing story: One of Noa's usual weekend tasks is "cleaning up her room" - basically, she lays on the floor, we dump her toys on her head and she sorts them into four bins: bumpy blocks, brown blocks, balls and stuffed animals. This is usually a time when we can sneak off and doing something fun like dishes or laundry.  On Saturday, Noa was "cleaning," Jeni was in the basement and Ben was in the kitchen when Ben heard a noise. It sounded like someone was walking around upstairs. He thought it must be his imagination - still, he decided to check.

Upstairs, Noa's toys were all cleaned up (a bit odd because she often takes her time or get distracted playing with items) and Noa was gone. Jeni must have come up, he thought, but then where'd they go. That's when he saw Noa in the corner. STANDING with her walker. 

​To be clear: Noa had been lying on the floor. The walker was not within her reach, as far we knew, she didn't know where it was.
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An old photo, but the basic set up for room cleaning. The walker was closer to the top of the bed, and Noa was a bit further from the bed.
Because she had recently started getting herself from sitting on her bed to sitting on the floor, and scooching over to clean up her toys on her own, she is aware of where the bed is. We can only imagine that she managed to get to bed and got to standing from here. The walker was near the head of her bed, so if she was exploring from there she might have found it. Fortunately, the walker was facing the wall (not the door to her room, near the stairs) - she seemed to be just standing and waiting. 

This is SO far beyond ANYTHING Noa has done on her own at home. She was very proud of herself, and we were very proud of her (and slightly terrified - clearly we have to pay attention in a new way!) 
Also thought it might be fun to share this video of Noa in her new-ish purple swing. She got it from Grammy for her birthday, but we only got to set it up last weekend. As you'll be able to hear, she has her zuzzies with her. She seems to really enjoy it.
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Winter Vacation!

2/21/2021

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Noa had a great winter break, thanks in great part to Aunt Paté (and yes, Noa pronounces it much like the liver spread) who came up from Maryland for the week to help up since Mommy was still very much laid up.
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Noa was thrilled to spend the week with Paté , who she hadn't seen for over year (and who used to be an ASL interpreter, so they already have a special connection.) She very quickly decided she wanted to do almost everything with Paté and did a wonderful job of communicating with her and was, for the most part, very patient when Paté didn't precisely understand what she was asking for or what order things "should" be in. Noa spent most of the week with one hand or the other just sitting in the "p" position.
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​Much of the week was spent just relaxing (swings, hammocks, going on walks with Daddy, sorting shapes and coins, reading braille, cleaning her room, stretching). Paté gave Noa a hair cut and later in the week, when we finally got her interested in doing some table work, she spent quite a bit of time using the brailler - in fact she didn't want to stop brailling!
BOTHER HIGHLIGHTS: before Aunt Paté's arrival, we celebrated Noa's birthday. She got two "blanket sweaters" - one blue and one brown, and a gold bracelet which she wore for a couple of hours and then put on Electra Monkey (with all the other bracelets) - and it's still there. She also got some more scrunchies with scarves attached, I put a few in her duffle bag. 

Of course, Noa is excited about getting back to school too and on Sunday morning was already talking about getting back to school. 
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(btw: ​Paté did quarentine before coming up to say with us)
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Weekend Requests

1/27/2021

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Another quiet, mostly indoor, weekend in the Land of Noa. While Noa seemed to be fine with staying in (as long we promised to keep checking the weather in case it suddenly got warm), she did make use of the occasion of being indoors to make several specific and interesting requests. 
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The requests started early in the day. While she initially didn't want to wear shoes with braces, she ultimately agreed to wear them (since we were going to do treadmill) but only if the shoes had shapes on them. Fortunately, we had a pair of sneakers with a triangular design that proved to be acceptable. This was followed by the request that her "later" shoes (after treadmill) would have stars on them. 

So, while Noa was on the treadmill, Mommy removed the "stars" from an old pair of too-small shoes and sewed them on to her current indoor shoes. 

Noa also requested that her morning treadmill workout be followed by changing shoes, hammock and spinning swing... all before breakfast. The shoes with stars, by the way, were a big hit.
During breakfast (which Noa insisted was breakfast, not to be confused with brunch or lunch, which would be followed by chocolate ice cream that she clearly wanted to save for a later lunch-dinner meal), Noa requested that after breakfast Mommy should put snaps on Electra Monkey's feet. Noa sorted coins while Mommy sewed on the snaps.

Noa tested out the snaps by having leaning down  from her chair and making Electra Monkey tap dance so she could hear the clicking on the floor.

She, again, wanted to where her pink hat and scrunchie scarf pretty much all the time (except when showering).

All in all, letting Noa call the shots this weekend turned out to be a pretty good thing, and it helped us to get over the hump of not being able to do some of the outdoor activities that tend to dominate her focus when she is home.

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The Weekend Exploits of Suburban Adventure Girl

1/17/2021

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This was a bit of an unusual weekend for Noa. Despite her commitment to the rugged stylings of a Suburban Adventuress, this was perhaps the laziest and most uneventful weekend ever experienced by the Sahl household.

Everyone slept late. After trying (without success) to negotiate a guaranteed end of rain, to be followed by a walk in the blue stroller, Noa seemed to give herself over to the rain-inspired lethargy of the day.

Noa rejected any suggestion that she walk on her treadmill, ride on her bike or even do yoga with Mommy. She decided, instead, that she wanted to hang out in the hammock (with zuzzies), hang out in her spinning swing (with zuzzies) and rock in her Woo-woo chair (with zuzzies.) She also enjoyed cleaning up her room, jumping after swings and reading her journal, but most of the day was about going from chair-to-chair.
Noa enjoyed carrying Mommy Monkey over her shoulder everywhere and insisted on wearing her pink knit cap (which she'd worn to bed - with her hair scarf still peeking out) ALL WEEKEND! She only let me take if off her once, Sunday morning, to brush her hair and put the scarf back in her hair. 

​While it was a bit out of the ordinary for a Noa weekend,  the rainy weather seemed to have a similar sluggish affect on all of us so, so we just decided to roll with it.
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On Sunday, Noa talked to Grammy on FaceTime and did a great job communicating that she was eating breakfast and that later she was going to walk to the car and go to school.

​Overall a very chill weekend.
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