Never Know What to Expect

We never know what to expect from our gal when something new is happening in her world.

We are having both of our bathroom showers and tub replaced. We did the small shower stall in our room first, which is in the back of the house. RJC doesn’t use that bathroom, so though it took a bit of time for her to get used to the comings and goings of those working on the bathroom, it did not directly affect her routines. She was also out of the house for the bulk of the work though there were days that she was home for a few hours while work was going on.

It took about 7 business days to complete the work (give or take) so it was important that she was able to tolerate the noise and the general tumult. She had her headphones on when they were here and that was very helpful. They also always said hi to her and if she said something first, they always acknowledged her. It was a very positive experience.

Today they started in the main bathroom in the hall, which is the bathroom she uses. Last night I took her to our bathroom and showed her the new shower and said, “Now it’s Rachael’s turn for a new bathtub and shower.” At first she said, “No thank you” but we explained it would be pretty and new. Not sure she really understood.

This morning, I reminded her that “her friends" are coming to work on the new bathtub and shower. Luckily when they arrived today, they were the same people who were here for the other shower, and she showed no signs of anxiety. I had moved her personal toiletries to our room and amazingly she was completely cooperative this morning, following me into the small bathroom without an issue.

I admittedly stressed a bit over this last night but our gal rose to the occasion like a champ!

All we can do is prepare her as best we can and then - we hope.

Today was a win!

s

A Few RJC Moments

 Life with RJC is unpredictable. She is so funny and smart and definitely has her own way of thinking. Conversation can be tricky as she has her own unique way of expressing herself (grammar is challenging and limited vocabulary) and she struggles with receptive language (abstract concepts are especially difficult and again, limited vocabulary).

 But in the end, we get there.

So here is a look at a few of our interactions that occurred over the year: 

1. RJC is on her iPad this morning.

RJC: “Can we go on a Safari Brazil?”

Me: Um, no. Sorry.”

RJC: “Grandma’s house!”

Me: “Yes. That we can do.”

She doesn’t acknowledge my response - just goes back to her iPad.

RJC loves large animals.

She will randomly list them off: cheetah, jaguar, elephant, giraffe, alligator etc. She often mentions “Safari” which she learned about from videos and from her multiple experiences on the Safari ride at Disney World (which I think she thinks was an actual Safari). She is drawn to traditional African clothing and likes to play bongo drums.

I am glad that she has enough skills to find videos related to Africa and safaris. An actual safari trip to Africa, with the long airplane trip, heat, and unfamiliar foods, loud noises and smells, would be stressful and would not fulfill her imagined version of what it would be. Add to that the dangers of being outdoors with large, wild animals. I shudder at the thought of her getting excited and trying to pet one. Yikes!

It is fun to catch glimpses of things that bring her joy. There is a bit of sadness for me that this is not an adventure she’ll have in real life, but I am happy that she is quite content with her internet visits.

2. We have been going to the same bagel store for many years and RJC is a favorite customer there. Weve known the owners for over 25 years so they know our family well.

She’s off to camp this afternoon so we stopped by the bagel store to pick up bagels to bring with her.

She finished her bagel, then got up from our table. She went up to counter, shook one of the gal’s hands and said, “See you on August 17!”

When we got to the car to head home, she insisted that we put the bagel store on our calendar for August 17th.

Our gal is a planner!

3. RJC was super excited to get new white shoelaces.

RJC: Mommy, take a picture of shoelaces please.

I get my phone and have her stand up. I lean over a bit so I can point my phone directly down at her shoes.

RJC: CHEEESE!

I couldn’t help it - I literally laughed out loud.

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Sigrid Bruk

Flexibility Success

 Every morning for many many years, RJC enjoys a plain bagel for breakfast. She used to like it toasted with cream cheese, but recently we bought a new toaster that she does not like, so she switched to not toasting her bagel and using butter.

Today we were supposed to go to the bagel store to pick up a fresh new batch of plain bagels for her, however my car is being looked at today (UG) so I preferred not to take her in it. I decided I was going to explain to her that we could not go to the bagel store today. I was not looking forward to this conversation.

We almost always have some bagels in the freezer. Hal keeps his bagels there but he did not have any plain ones. 

Sometimes RJC has plain bagels in the freezer. They are there because for whatever RJC reason, they have some perceived flaw. Most often they have too many air bubbles.

After a conversation with her about the car being broken (along with exaggerated sad faces on my part to help her understand) and a great deal of very close inspection on her part, of the bagels in the freezer, she was willing to take one from the freezer! 

We now have the bagel store on our calendar for tomorrow and she is currently back to her morning routine, and not obsessing over the issue. 

A major step in flexibility! I cannot stress how amazing this is for her to work at understanding what I was telling her and then to problem solve on her own - with NO negative behaviors! Not a one! 

A big step forward in receptive language and problem solving. 

So proud of my gal this morning!

Continued Growth - Never Give Up!

RJC was annoyed with me this morning. Usually this sort of interaction ends with her yelling and hitting her face.

Today it ended with her saying, “Sheesh mom!” (an expression I have never heard her use, but admittedly I have said it at various times of exasperation).

Even better, she moved on to do as I asked.

Honestly. I just stood there for a full minute and gawked.

How amazing is my gal! Gosh I just can’t get over how she continues to grow in so many ways.