博客存档

It was Great until it Wasn't

9/12/2022

Noa had a tough weekend, though you'd never know from these peaceful photos taken less than an hour before things turned.

As we mentioned in our summer run down (previous post), Noa really struggled leaving a Fisher Cat's ball game and it seemed to do with leaving the highly stimulating stadium setting.

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!

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Noa's Summer Break

9/6/2022

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August was busy! Noa had a great break with lots of interesting developments... so let's get this summer break report rolling!

Navigation & Exploring

The biggest shock of the month came when we discovered that Noa had managed to finish cleaning her room, find her walker (on the far side of the room), find the door, find the stairs, come down the stairs and sit at the dinner table entirely on her own.

We didn't even know it happened until one of us happened to find her sitting at the table waiting for dinner as if it was the natural thing in the world!

Noa clearly knows one of us is watching, you can see how she navigates (and listens).

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

Noa also really enjoyed brailling over break. She now wants to do 12 lines per session, rather than 10, but she does them very quickly. Once she is done, she takes out the paper and puts it on top of her growing pile of braille compositions.

Horsing Around

Noa has been working very hard at horseback riding. The main focus this month has been on sitting "back and up" (which her back straight and her head up - if you ask her do this at school, she may also put her hands in the position as if holding a pair of reins).

She has also been doing some great stretching on the horse, and core work (riding with her feet out of the stirrups and her hands out at the side or above her head). The work she's been doing has been really impressive!

Play Ball...

While Noa REALLY enjoyed attending the first several innings of a NH Fisher Cats game with some family friends, she really didn't like LEAVING a Fisher Cats game. It was the only mega meltdown of the break, but it was a whopper. We spent a full 45 minutes in the parking lot trying to talk Noa out of her wheelchair and into the car. It was rough and her frustration was very intense. We suspect that she was having a sensory reaction (because she loved the sensory experience of being at the game - the music, the cheering, the announcers - and didn't know how to let go of that).

Noa with her hand over her heart for the National Anthem

Doctor, Doctor!

Noa and Dr. D

Noa finally realized that she LOVES the dentist. He does zuzzy stuff!! For this visit, she allowed "Dr. D" to look in her mouth for 6 sets of 10 and then talked about "Dr. D" for days - she knows she sees him in 6 months.

While she is less excited about seeing her GP in 1 year, she did really great there too... until there it was time for a shot. Still, we put this one in the "win" column.

Noa's bean plant

Noa enjoys an accessible bike event.

In other news...

The bean plant Noa brought home at the end of the school year produced a handful of beans!
Noa has a new monkey at home: "James Sahl" who does big breaths with her at home, just like James does at school.
Noa has some new (less noisy) zuzzies. She wasn't thrilled about having them as her bus zuzzies, but we hope she'll get used to them because the old ones are quickly dying.
Noa wasn't terribly interested in her usual yoga and treadmill activities over break, but she was interested in doing a stationary bike with fun (pop) music playing.
Noa was very interested in spelling all kinds of words over break.
Noa wanted to meet and know the names (and spelling of names) for everyone she met over break including: Eli (grocery bagger at Hannaford) and Gloria (works the register at Target). She also a lot of new friends at Visions Center for Creative Housing, where Daddy works: Anjela, Denise, Sylvia, Salem, Emma, Ashley (who is her special friend there) and even Congresswoman Annie Kuster, who came to visit Visions.

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.