Summer Vacay Recap

​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. 

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. 

The 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. 

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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.”  ​