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.

A New Twist on a Familiar Experience

This is the first summer that RJC is going to camp for a second two week session. As usual, we held off telling her she was going, until a few days before we were dropping her off. She tends to obsess over her calendar and certainly over changes from her routine, so we try to give her enough time to process the change but not so much time that she is overly obsessing. Happy to say when we did tell her, she was completely fine with it AND gave me a high five! 

The amount of preparation for her to go to camp for two weeks is exhausting. Luckily, the camp plans very far ahead so all of the paperwork is done months ahead of time. The camp also sends a list of items needed with suggested amounts, so we cannot forget anything. I start to work on the list quite a bit ahead of time. That means we literally have to hide some of her clothing because we do not want to take a chance that she will rip some (usually because of a stray hanging string that bothers her) and we will be short on the amount of clothing she needs to have. The other day when I finally went to pack her suitcase, I actually forgot where I hid some of her clothing and had a few moments of panic before my husband reminded me where everything was! PHEW!

During the other three seasons of the year, RJC has been going to this same camp for an overnight, one or two weekends a month. This has been so helpful in her comfort level at camp for the longer duration during the summer. Though most of the counselors are different, there are enough familiar people for her (and me) to feel comfortable. She has also been going to this same camp for years, so she is familiar with the setting and the general schedule (which she basically memorizes on the first day).

Her first session at camp this summer went well. We received this lovely note from her counselors at the end of camp, in part stating: "She was so helpful and nice with everyone even when presented with challenges you could see tenderness and kindness" and "Her joy was special to witness." I was very pleased to see that one of her counselors from the first session was her counselor again this session. It makes the transition easier for RJC as well as for the counselors who are new to her. The camp collects a huge amount of information before campers arrive and I also send a one page "Getting to know RJC" sheet to help support them to support her. We also drop off some essential food items though we do encourage the counselors to offer her the camp food. So far that has not been much of a success, but I think it is always worth it to try.

Drop off this session was quite quick. We went through all of the stations in less than an hour and the next thing we knew she was giving us kisses and hugs goodbye and was off with one of the counselors. She appeared to be quite relaxed and "at home" at camp and she knew exactly what to expect.

So here it is, the first morning after dropping her off and I wake up feeling a bit antsy. It is so crazy to me that after all of these years of her attending camp, I still find it somewhat uncomfortable to wake up and know she is not at home. That being said, I am also looking forward to these next two weeks. My husband and I have some fun plans (you can bet ice cream is on that list), and we are aiming to get an item or two crossed off of our long "to do" list that is simply easier to do when RJC is not home. So emotionally, I am working on balancing my mama heart that always wants both of my kids right next to me, with my mama heart that is so proud of both of my kids for their independent spirits.

I do wonder if this will ever become easier. I remind myself that it is important for RJC to be out and about, making connections with other people, living her best life, and exploring her independence. It is my role to support her and give her skills for the future. We are so lucky to have camp as a stable part of her life. She usually comes home with a new skill, or we can see that she has had some new experiences, and my bit of anxiety is all worth it.

Hoping you all are having a wonderful summer too :)

A Mini Golf Success!

We were busy yesterday! Started with a mile walk and ended at mini golf. The theme of mini golf was a Safari and my gal sure loves big animals! She just had to wear her Safari hat.

The big news is that for the first time ever, I was able to get her to take turns while we played. Usually she will take her turn, let the next person take their turn, then just keep taking turns herself until the ball is in the hole.

Though I had to prompt her with “wait, it’s mom’s turn” every single time, she actually listened and waited! Whoo hoo!

Added bonus: I got a hole-in-one…RJC got TWO holes-in-one!

A really lovely day together!

Routine

RJC has an evening routine.

First she showers, then she comes to the living room, turns off all of the lights, puts on PBS and mutes the television. She will often (but not always) drift off to sleep on the couch, usually a few minutes before 10 PM which she considers to be her bedtime.

At that point I wake her, help her brush her hair and teeth and bring her to sleep in her own room. She says the first two lines of the Shema, we have our scripted goodnight dialogue, and she’s asleep in no time.

Tonight she fell asleep by 9:30 which rarely happens. I figured she must be tired so I woke her up to get her started with her routine. She opened her eyes, checked the time and said, “10:00.” Then promptly went back to sleep on the couch.

Moral of the story is: Don't try to mess with the routine!

Communication - Still a Challenge After All These Years

 RJC: “Mommy, can I put the table clock in the sunroom for the birthday?”

Me: (pause while trying to figure out what a table clock is).

“Can you say that again please?”

RJC: (looks up in the air and concentrates on what she is saying): “Mommy, can I put the table clock in the sunroom for the birthday?”

This time she says it more slowly, obviously wanting me to understand her.

Me: (perplexed): “Can you show me the table clock please?”

RJC reaches into a bag, picks up a plastic birthday tablecloth she bought for Hal’s birthday next month, and shows it to me.

Me: “Oh what a good idea! You can put the tablecloTH (and I over emphasize the “th”) on the table in the sunroom on dad’s birthday! Can you say ‘tablecloTH?”

RJC: repeats it exactly as I said it, with an emphasis on the th sound.

Me: “Excellent, you’ve got it! We can do that on daddy’s birthday.”

RJC: “Ok. Thank you mommy.”

She happily puts it back in the bag.

Communication is still such a huge chore for her but when she’s motivated to get her point across she’ll work at it.

We had another of these communication issues last night when I couldn’t understand what shirt she wanted me to buy her. That one took longer and her frustration showed as her voice got louder. We eventually worked it out.

I can only imagine how frustrated she is on a daily basis - both communicating and understanding. Very proud of my gal this morning for sticking with me as we figured it out!

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122Bill Chernock, Cindy Gervais and 120 others