Kind and Thoughtful

 This morning was a complicated one. Every Sunday we go to do our weekly grocery shopping. As there was a big winter storm headed this way, we did most of our shopping on Saturday. We saved a few things to get today, Sunday, so RJC would still be in her routine and so that she had the opportunity to be out of the house before being snowed in.

We got to the grocery store quite early, as the news showed that the snow would not begin until 11 AM. 

Side note: the snow came earlier than expected and it was snowing when we left the store. A reminder that Mother Nature does her thing when she's ready.

Back to our story - the store was not particularly crowded but there were other customers there and only one register had an Associate working. I am not a huge fan of self-checkout and while I will use it occasionally for a very small order, we had a few items, so we decided to wait in line. 

The line was moving along but too slowly for RJC who was getting antsy and loud. That happens much less than it used to, but I think she was feeling anxious, probably picking up on my own anxiety about the snowstorm. So, she would yell, then hold her hands over her ears and say, "too loud." In general, she says that because she knows she shouldn't be yelling and she's self-correcting. She will get into a cycle of yelling and self-correcting, then apologizing to me. She will do this quite a few times and eventually, once I have reassured her enough times, saying "It's ok, RJC" she will calm down. So here we were, stuck in the screaming cycle.

A few minutes later, RJC calmed down. Shortly after, an employee at the store told me that she went to the front desk and asked them to lower the music, as she thought it may be bothering RJC.

How kind and thoughtful is that!  

I was so touched and impressed that she recognized this behavior and acted to shut down a possible trigger.  For sure, sometimes when music is too loud, it does trigger this behavior. Though I am not sure that was the case in this situation, I simply thanked her and reinforced her kindness. Though it may or may not have been the case in this particular situation, clearly it could be in a different situation and//or with a different individual. She also let me know that any time we were in this store, if the music is too loud, we could go to the front desk and ask them to turn the volume down.

It is people like this, who cross our paths, that we are grateful for. It is complicated enough to be out and about and never be completely sure what will be.  To have somebody proactively come up with a possible solution to a difficult situation, instead of making a judgement or doing the "stare and glare" that we have experienced more often than we should have, is such a relief. Truly a load off of our shoulders.

I hope you all are enjoying the day wherever you are, and that if the time should come that you need a bit of grace, it will be granted. 

AND you will recognize it for what it is.

A Last Minute Change of Plans

We live in an area where winter includes snow. This means that sometimes we are stuck indoors, as driving in freezing rain or snowy weather is not comfortable for me. I do not even like being a passenger. Unfortunately, the ramifications are that we may have something scheduled that we cannot attend, requiring us to cancel or change the date. My original plan was to try to put off the decision until I saw what the weather would actually be as we got closer to the time we needed to leave the house.

It was quite a long morning of back-and-forth conversation, with me using terms like, "maybe" and "let's wait." RJC came to sit next to me on the couch where she could focus soley on me and not be distracted by her iPad. This was a very intense exchange. Eventually I could see she had gone from trying to understand, to feeling agitated as she was moving closer to me, and at that point I realized that it was kinder to simply cancel and reschedule. For her, even when I had her look out the window and I called her attention to the snow piling up, the terms "maybe" and "let's wait" were too abstract.

I give her huge credit for not getting loud and that she did not hit her arms or face. She was really trying to understand and trying to get me to understand her. 

I told her she could pick a new date, and she chose one in the summer. That took me aback for a moment as I thought she would want to go as soon as possible. Then it dawned on me that in the summer there is no chance of snow, and my gal was not going to take the chance of being disappointed again due to winter weather. 

RJC is both logical and smart, and it is always an amazing pleasure to watch her figure things out on her own and handle change and disappointment in a more appropriate way than in the past. 

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.

*******************************************************************************

 

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 :)