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Weekend Adventures - Sept. 20

9/20/2020

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Noa had a great weekend. Overall in a good mood. She loves being back at school. On Friday, she seemed quite tired after her "good week" at school. You can see in the photo below, she is dozing off with a water bottle in her hands.
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The big event for Noa this week was getting a new desk. We wanted her to have a work space that allowed her to move from one activity to another on her own a bit more. She was VERY happy with the desk and spent quite a bit of time there (mainly playing the piano and sorting coins) but I showed her around to where other items are and she helped to pick where some went. I'm brailling items for her as well so she can find them. She even has a built in cup for doggy to sit in, and she likes the star stickers. The white board directly in front of her is magnetic. ​
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Noa also did really well as horseback riding this weekend. She is preparing for the Special Olympics which they will do with videos of the riders. She did a great job turning right and left, stopping and telling the horse to walk.  We're working on actually giving the horse a little kick to walk (she moves her foot but it's not quite a kick), and also working on keping her head up which is also a challenge.
In other news, we have a few new clips of the mystery sign. Noa was doing something a bit different this weekend - starting the "c" part of the word over her head and then moving it down. It looked a bit more like a sign that I had some vague memory of but couldn't quite remember. In the top clip she uses one hand, but in the bottom clip she uses both hands.
She did a bit better standing up out of the stroller this weekend. Of course we also started every walk with a long discussion about standing up "fast fast" after stroller. While we still had delays and mysterious demands, the situation as a whole was a bit less emotional and not as lengthy or difficult to get past. 
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Noa Land Stand Offs

9/7/2020

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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. 
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Food for Thought

9/7/2020

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​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. 
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Tyranisaurus Teen

9/7/2020

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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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