Monday, November 25, 2013

Rory update.

Time for a Rory update...

We had therapy last week with her totally awesome and in high demand (BOO! YAY! BOO!) therapist, Miss Angela. Angela is phenomenal. She has a jammed schedule and works her magic to get Rory in once a month (we're on the cancellation list for any available appointment). I know a lot of people would get frustrated with once a month appointments but I'm choosing to be so grateful Rory likes her and is open with her. Angela and Rory have a great rapport already and I'm not switching again. I know if we work diligently on the things she's given us each appointment through out the month, it will be worth it. Eventually, her schedule will mesh with ours and we will get in to 2x a month or even more. I know it, I pray for it and I trust that it will happen.

This was our second session. Our behavioral health facility is brand new and beautiful. Half of the entire building is different therapist's offices for individual sessions. There are probably 15-20 offices for therapists of all kinds: men, women, young, old...there's someone for everyone, honestly. The other half of the building is home to "units" for different behavioral disorders. There's ADHD centered rooms, sleep disorders, etc. The best is a HUGE autism unit. There's a calm room, 4 therapist offices, special bathrooms and a giant playroom with Autism appropriate areas. Light tunnel, sensory walls, a swing, big soft play sets, a 5 foot by 5 foot ball's really great.

Last time we were in, Angela showed Rory the autism unit and promised we'd use it at an appointment if no one else was in the unit. Well this appointment it was free! Rory got to play while she chatted with Angela and it was really cool.

They used the ball pit a lot. Sensory wise, it was calming to Rory. She liked sinking down below the balls. (A lot of sensory kids like a little pressure or weight on them, they find it calming. Rory definitely likes several blankets or pillows on her)

The balls were 4 colors: yellow, blue, green and red. Angela used the balls to help Rory identify and put a color with each of her biggest fears.

Paraphrasing her words/reasoning:
Yellow, for Rory, represented being happy because the sun in yellow and Rory is happy when it's sunny. (Not a fear, but a goal.)

Red is people being angry or yelling at her.

Blue is people dying/going away forever because that makes her cry and tears are water and water is blue.

Green is going bald. She's not afraid of bald people but she's afraid of going bald and not having any hair because people would laugh at her.

When she was talking about going bald, I excused myself and cried in the bathroom for a few minutes. Imagine your child living with the fear of having no hair. I can't explain to her that going bald is just part of having a childhood disease like cancer and that people understand it. Because they don't. When I see a kiddo with a bald head, I immediately associate it with cancer and share a smile or hello with them. When you see a kid with a patchy head, pull spots galore...well the judgments are a little different. A kid with trich's baldness/hair loss looks very different from childhood cancer hair loss. It's kinda scary at times, honestly. Very different. Very hard to explain. Very difficult for me to accept, honestly. I'm not a very appearance oriented mom. I love cute outfits but I had to give up control of Rory's hairstyles and accessories long ago. She hasn't successfully worn a bow or barrette in her hair for longer than 20 minutes in 3 years. She can't handle her hair being braided or even put in a ponytail. She has strong opinions and inclinations when it comes to what to wear and what feels good that day. I've accepted it and I'm okay with it. In fact, I look forward to seeing what Rory wants to wear each day. She's 4 and it's a-okay to be "Fancy Nancy" every day. But the looks, the judgement at the grocery store, the head shakes, the flat out statements...ugh. It can be really hard to be mom of a kiddo with sensory issues sometimes.

Back to our session...

Angela worked with Rory on some coping mechanisms to calm her down when she feels the anger or worries bubble up in her belly. They spent a long time practicing angel wings (Deep, consistent breathing with repetitive arm motions) After that, Angela took her in the calm and quiet room.

That room was awesome. I wanted to lay down in there!! They had these individual "bed" type things with white tulle hanging from the ceiling, making like little tents. There was a white noise machine, cool air blowing through, light up headboards with LED lights that changed colors and patterns, LED lights in the ceiling to focus on and floor to ceiling bubble tubes with a very calming bubbly sound as bubbles traveled up and down the tube and the tubes changed colors softly. It was a great room! Rory laid down in one pod and focused on the bubbler for a while, doing her angel wings.

We are thinking about investing in a lot of those things to help her calm down at night or when she gets worked up...

All in all, it was a great session! I'm thrilled with Angela and grateful to have someone who takes us seriously and is willling to work through so much with us now. She specifically said we need to amp up our anti-anxiety efforts after Christmas in preparation for Kindergarten, which I. Definitely. Agree. With.

Another day closer towards Rory leading a normal life...


Unknown said...

Yay! I'm so glad that Rory had a good session. It sounds like Angela is wonderful and I am so happy that you found a good place for Rory. Hopefully some more sessions will open up soon. Hugs and prayers, friend!

Meghan said...

I am so glad Rory has found a therapist that you both love. I hope everything continues to go well! Sending lots of love your way!

Erin said...

Hi Kate,
I don't know if I've commented before, but I've been reading for a couple years. I have trich too- probably a more mild version than Rory's (just my eyebrows/eyelashes.)

I know you've probably already researched, but you can find small bubble lights fairly commonly. I had one that changed colors when I was in high school that I got at Spencer's. But what about maybe a small fish tank, with a filter? The sound the filter makes might help, and it would give her something to focus on. As long as you have the right setup, they can be very low maintenance so you're not adding any more to your plate.