Birthday Party and Spring Sing

  • Post category:School
  • Reading time:2 mins read

This will probably be one of my shorter posts because not much happened these past couple of weeks. We’re still dealing with James’ crankiness. I hate to think that this is his new ‘norm’. There’s got to be something causing this. Maybe the VEEG on the 8th will reveal something. Who knows?

 

Birthday Party

Last weekend we went to a birthday party for the son of one of Stacy’s best friends when she was growing up. It was good for her to catch up with some people she hasn’t seen in a while. A few of the kids at the party were interested in James and asked questions about him. We tried our best to explain James’ medical issues in simple terms that five-year-olds could hopefully understand. Some of them seemed sad for James, which is okay, I guess. I think it’s good that the kids are curious about James and aren’t afraid of him. I also think that it’s good that kids are introduced to other kids like James so that maybe they will feel more comfortable around someone with disabilities later in life.

 

James lies on a cushioned surface outdoors on a wooden deck, wearing a blue Teenage Mutant Ninja Turtles shirt with a white cloth draped over one shoulder. Bags and other belongings sit nearby, including a patterned bag and a colorful striped tote. Part of another person’s leg and arm are visible beside him. A brick wall, wooden railing, and green grass frame the background, giving the moment a relaxed backyard feel.
Chilling at the birthday party

 

Spring Sing

School has still been a little bit of hit and miss because of his ongoing high heart rate, congestion, and irritability issues. Stacy made sure that he was at school on Wednesday for the kids’ end of school year “Spring Sing”. We received a little bit of a bonus for sending him to school on Wednesday. Stacy received the email below from the occupational therapist (OT) that works with James at school. I redacted the names in the email for privacy reasons.

 

A written note describes an observation session with James, where an occupational therapist and another staff member watched him respond to movement activities. It explains that James turned his head to the right and moved his left arm as if requesting to walk, an activity he typically does with support. Because he had already spent 40 minutes in his stander, they took him into the hallway in his chair. There, he activated a big mac switch five times—with and without verbal cues—showing a 15–22‑second delay between presses. The note concludes that his actions appeared intentional and connected to his understanding that moving his arm could request more walking or hallway movement.
Email from school

 

Even though he’s been missing a bunch of school lately, he’s still rocking it!

I am very thankful that Stacy took a video and some pictures at James’ Spring Sing because I was at work. Here are a couple of pictures and the video that she took:

 

A group of people gather in a classroom‑style space. At the center, James sits in his high-low chair on wheels, wearing a white hat and a green outfit. Nearby are conga drums, a laundry basket, and a backpack on the floor. Another child sits on the floor in a blue shirt with colorful leg braces. The room has the feel of an inclusive activity or therapy session, with music instruments and personal items scattered around.

 

An adult adjusts James' blue hat decorated with Teenage Mutant Ninja Turtles characters and white stripes. James sits in a supportive chair with protective padding around his head and wears a bright green shirt. The setting appears to be indoors, giving the moment a feeling of attentive care and positioning support.