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

A Problem with a Dime (yes, a dime)

A bit of background:

RJC loves coins. She does not care about their value as she does not understand that concept, but she does like to collect them and put them in plastic bags to use when we go someplace where she can put them in a tip jar. She does not understand the concept of a tip either, but she does know it makes people happy when she puts the money in the jar. So everywhere we go, she is always looking to find coins on the floor:  supermarkets, outdoors, restaurants - you'd be surprised at how many coins she can find.

This morning we were out getting bagels and I found a dime when I went to throw something in the garbage, so I handed it to her in the back seat. She got all settled in with her seatbelt on and then I hear, "Uh oh. Where's the dime?" 

And so it begins.

First, we hunt through the car. And we hunt and we hunt and we hunt some more. No dime. She starts to try to literally pull the back seat out of the car. It is a relatively new car so I would prefer that damage is none to minimal but the gal is on a mission. She is sticking her fingers in every small crevice she can find. I am looking as well but there is simply no dime to be found. She figures out how to pull the back seat down (I had no idea), but we still did not find it. She insists we look in the trunk. 

As we continue to look, her anxiety is increasing so she is getting loud. "Dime, oh dime, where are you?" ""Oh no, oh no. I can't find my dime." Etc. 

While this is going on, I am looking at my watch because we have things to get done this morning. I tell her that we need to go home and we will look again later. Her response is, "Let's call Daddy now." I have to agree, dad is a good coin hunter, but he is at work and calling is not an option. I tell her we will see him later and that he can help us look then. We arrive home and she grudgingly comes into the house with me. While I am getting some things done, she is still talking about the dime. "Can we try again for the dime?" "What happened to the dime, mommy?" and occasionally singing "Where oh where has my little dime gone?" My patience is holding up though admittedly wearing thin as I continue to reassure her that we will look for the dime later. I tell her to take a breath and we do so together. It seems to help a bit. 

I finished a few things I needed to get done and she sits and pets the cat. Now I hunt through our house looking for a replacement dime. I look everyplace I can think of, but there's just no spare dime to be found. Ug.

Our next planned activity is to take a walk and go to CVS to pick up a few prescriptions. Of course, as soon as we get in the car, she is asking about the dime, talking about the dime, and singing about the dime. We get to the parking lot and when we get out of the car to take our walk she is once again hunting through the car, pulling at the seats, looking under the seats, checking the floor and still - no dime.

As we walk, she is getting loudly verbal about the dime once again. "Mommy made a mistake with the dime," "I just can't find my dime," etc. At the same time, I am attempting to figure out how to solve this problem because it has been hours now and I am getting exhausted and more importantly I do not want this to escalate.  She yells at intervals as we walk on the trail but so far it is manageable. 

Then it comes to me. 

Our next stop is a very short ride to CVS to pick up some prescriptions.  We get back to the car and as she starts in once again about the dime, I tell her we will go to CVS and once we get home we will look again. We arrive at CVS and while she is still mumbling to herself "Ay yi yi" etc. I grab a bottle of sparkling water. I have her sit in a chair at the pharmacy where I can easily see her, but she cannot hear me if I whisper to the pharmacy clerk. I tell the clerk I am going to pay for the prescriptions on my credit card and I will pay for the drink separately with cash - and I need dimes with my change. She gives me three (precious) dimes and I put two in my wallet and hide one in my hand as we head back to the car.

"Let's take another look" I say. She starts hunting again and I use my best actress voice and say, "Oh! Hey look!" and open my hand to show her the dime.

She is beyond thrilled. "Here you are little dime, I found you!" She is all smiles. We get back in the car and on the drive home she is literally singing to her dime that she has clutched in her hand. I am beyond relieved. 

It amazes me how difficult these sorts of issues still can become huge problems in our household. Who would ever imagine that a lost dime would create hours of angst! Reasoning with her is not a possibility. She does not want a different dime; she absolutely wants her lost dime back. She has no concept that the dime is worth so little in value that all this time and energy being spent is way out of proportion to the issue. In her literal way of thinking, the dime is lost, it is obviously in the car, so it needs to be found in the car. 

There are some positives here and while they may seem small, they are actually quite big.

1. She did not hit herself or me at any time during this ordeal. Everything was kept verbal - yes, she was loud, she was repetitive, and she modified scripts to fit the situation. All of those things are a better choice than physical harm.

2. She continued listening to me. She was not thrilled about having to go in the house when she wanted to stay and hunt for the dime, but she followed my instructions.

3. She took a breath. Whoo hoo! We have been working on breathing and while she's always been willing to practice, when it came to practical use it was only used after a problem was solved. In this case, she took a breath with me in the middle of an angsty moment. This is exactly the skill we are working on. At some point the ultimate goal is that nobody would need to prompt her to do so, and she will self-regulate. It is a long-term goal and process. 

4. She apologized in her own sweet way. "Mommy, sorry I was loud today in the mommy's car and dime lost." I reassured her that she did a good job. 

It is just lunchtime, and I am emotionally tired but generally pleased with my gal for all of the above reasons, and generally pleased with myself for finding our way through this. 

Phew. 

Camp Time: Recharging for All!

Recharging!

It is that time again! We signed RJC up for two weeks of camp. and unlike last year when Covid was still lurking and her first week of camp was cancelled, we are expecting that she have two weeks of camp. While she is at camp, we take that time to recharge our own batteries and remember that we are a separate entity from our daughter. Most of the times, our lives are so completely enmeshed in hers that we forget to consider our own needs and desires. Not to say we don't enjoy life - we certainly do find time to spend together. But it is also true that to find time together takes a huge amount of planning. While she is at camp, finding time together is more...organic. My husband has time off from work and we do not have to consider and make plans for adult care. Our time is completely our own to do what we want, when we want, how we want to do it. We also have our own space which takes getting used to but is admittedly quite pleasant. We turn off lights, it's quiet, we are spontaneous throughout the day. Camp is a great experience for our gal, but it is also time for us to be a bit...selfish. While that comes with a smidge of a guilty feeling for me at first, it usually morphs into relaxation. Summer camp is truly a benefit for our whole family in various ways. This year the start of camp time has been a little big of a different journey.

In the past years, simply talking about camp was not acceptable. It would create anxiety for RJC. We knew she loved camp once she was there - she always has had an excellent experience - but for whatever reason, the thought of camp was difficult. We could not tell her she was going to camp until one or two days before it was time to leave. I'm pretty sure she knew she was going because she knows the calendar well and we have been signing her up for the same two weeks for years. Still, ignoring it and not putting it on the calendar was working for her so that's what we did. Last year I went so far as to pack her stuff up at our very kind and tolerant neighbor's house. Literally her camp clothing was strewn over her living room floor, and I would go over to her house, sit on the floor, and write her name in all of her clothing while packing her suitcase.

This year it has been a very different experience. Over the last year, she has been going to camp for approximately one overnight a month. She would leave early Saturday morning and come home Sunday in the late afternoon. She really seemed to enjoy those weekends. It appears that she has become very comfortable in spending time at camp and this summer we decided to try telling her about summer camp ahead of time. When we told her she was going, she wanted to see it on the calendar - and that was that. We saw no signs of anxiety or panic. We would mention camp here and there, just to be sure she truly understood and to gauge her reaction, and it was always quite positive. The people who work with her and know that summer camp is not a subject we talk about, were so used to avoiding the subject that we had to tell them it was fine to mention it. When they did ask her about it, we were all pleasantly surprised that she continued to have no negative reactions.

I actually packed at home and had the suitcases out for a good week or so before she was going to be leaving. She was not in the least bit phased. It was so much easier for me to gather together her clothing, write her name in everything, and pack her up. Granted, gathering everything took a few weeks, and since she still tends to destroy clothing, I had to make quite a few trips to various stores, but the stress of having to gather everything AND hide everything was lessened by being able to talk about it and simply take care of the task.

All in all, because she was calmer, I was significantly calmer. In fact, I was quite pleased with myself as I went about the business of getting her ready without feeling anxious or any signs of impending panic. Every once in a while, I'd have a twinge of concern, but mostly I was moving right along, doing what needed to be done and not feeling physically ill or missing out on sleep (well, I do often still miss out on sleep but this time it was not due to worrying about camp).

Yesterday we dropped her off at camp and it went quite smoothly. It was a weird, on and off rainy day, though by the time we got to camp it was not raining anymore. It was probably also helpful that her sister came along, as they have their own special relationship. The intake process at camp is thorough and takes a bit of time, which I find comforting. I like knowing that there is a process in place that makes sure they have all of the information needed to best keep her happy, safe, and healthy - the three most important issues that we focus on a daily basis. She recognized some staff and a few campers which also helped make me feel more comfortable. When she met her bunk staff, she gave them a robust greeting and, as we would expect, immediately checked out the written daily schedule. As we continued through the intake process, we saw no signs of anxiety and when we gave her a hug goodbye (hugs really aren't her thing but she seems to know that it's my thing) it was a quick one and she was off to her bunk with her counselor without even a glance back.

We left camp and went out for a nice lunch. Came home and we were hit with the quiet. Our home, in general, is never quiet. Our gal likes to play on her iPad and we always hear her talking (or yelling). When we have the tv on, we have to keep the subtitles on in order to watch a program. So being home and not having that constant background noise is strange for us. Perhaps even a bit disquieting. We also were off of our own schedule as lunch was so late that we did not want dinner. We settled in to being alone and for dinner we chose to made individual cakes in the microwave. Who knew such a thing existed? So much fun! Talk about not keeping to a schedule. In general, my husband is a healthy eater who believes in three square meals a day (I, on the other hand, would never choose to eat three healthy meals and the idea of cake for dinner would work for me just about every day). For us, this was equivalent to living on the edge. The evening wore on and we were simply enjoying our time together. 

At some point, fatigue took over and my husband went to sleep but I was wired so I stayed up for a while. Eventually I made my way to sleep as well. I suppose I should not have been surprised, when at 4:30 am I woke up in a bit of a panic. It was inevitable. First, I am used to being up that early. Sleep does not come easy for me. Second, my nature is to worry, and anxiety is one of those things I struggle with on a daily basis (though meditation has been a huge help in this area). In any case, I tried to fall back to sleep but that was not happening. I snuggled in with my husband and often his heartbeat lulls me back to sleep, but my body and brain were just not having it, so here I am, awake and writing this post.

It may have been the rain that had started up again at night, or perhaps just the buildup of my run-away thoughts:  is it raining at camp and will she remember to put on her boots and not her sneakers, if she is having trouble falling asleep will the counselors know what to do, does she have her stuffed animals with her (I couldn't remember seeing them when we got to her bunk), will she eat dinner and if she doesn't like what they are having will the counselors remember that we dropped off food for her, and the list in my head of things to worry about just went on and on. 

I have found that writing things out is helpful to me in terms of organizing my thoughts - which is actually how I started blogging. So, as I sit here this morning and it is quiet, and my husband is still sleeping, I am feeling less like hopping in my car and zipping off to camp to check on her, and more like everything is fine because I have not received a phone call to suggest otherwise. My brain is settling and my stomach is feeling better. Yes, I may call camp at a decent hour to see how things are going. I may even take a bit of a nap this morning before we start our first official day of our own vacation.

I am sure I'll work through this, and I am looking forward to hearing about what RJC is doing at camp. It's always fun to go through her art projects when she gets home, and she also brings home a little book with pictures of her time at camp. Between the pictures and asking a few questions, we can usually get some idea of what she liked to do.

While I am frustrated by this bout of anxiety, I have learned that it is best to roll with it. History has taught me that this will pass and that I will settle into this time and will cherish and enjoy every moment, knowing that RJC is having fun and exerting a bit of independence. Exactly the goal of these two weeks. 

Camp weeks are here. Time for ALL of us to recharge, lean into new experiences and make some new, wonderful memories. 

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UPDATE:  I called camp and spoke with an Admin. They did take her through her individualized evening plan. While the other campers were getting ready for bed, she helped set up for breakfast and they walk around camp if needed, to tire her out. This way she sleeps better (and obviously, so do her fellow bunkmates). The admin also reassured me that she saw her this morning and she was happy and relaxed.

I apologized for calling, telling her that I should have trusted the system. She immediately replied that it is never a problem to give a call and that they are fine getting "reminders." 

Cannot tell you how much better I feel, and now we are ready to get moving and have some fun! 

A Win Today!

 RJC loves birthdays. She plans our family "parties" for each of us, picking out the type of cake she wants to bake and whatever decorations and other birthday-related item she chooses at the time. This month is my husband's birthday, and her plan was derailed. Not once, but twice.

First, she wanted to bake him a vanilla cake with vanilla frosting. The problem is that his birthday is during Passover, so we do not bake the standard cake from a box during this time. She was pretty dug in on her idea but over a period of a week or so, where I repeatedly told her "No vanilla cake. Special chocolate cake for Passover," she finally gave up on her idea and got on board with the special chocolate cake.

Sidenote: she promptly threw out the full, unopened can of vanilla frosting. She saved the box cake, however, and bought a different kind of frosting to pair with it for her sibling's birthday. 

The second disappointment came when she found a special birthday hat on the internet that she wanted to buy. My husband and I took her to the specific store where she had seen it online. We asked the employee for help and she kindly took us to where it should generally be and sadly, they did not have the hat. We walked up and down the many aisles and still, no hat. Once I realized the hat definitely was not at the store, I sneaked a peek to see if it was available online but alas, it was not. RJC continued walking up and down the aisles looking for this specific party hat while we were trying to help her understand they did not have it. 

History tells us that this is the perfect storm for a meltdown and by continuing to wander through the store we were simply postponing the inevitable. We just could not figure out our next step of getting her out of the store without the preferred item. My husband finally said, while literally winking at me, "Why don't we try the store next door?" We felt mighty certain there would not be this specific hat but two thoughts: 1. She may find a different hat she'd be happy with and 2. We have time to try to figure out how to avoid a meltdown getting her back to the car.

She was agreeable so we went next door in search of this hat. As we walked around and around and around again, with no sign of the hat, I gently suggested we go back to the first store to see if there was a different hat we could buy instead. To my surprise she agreed.

Truthfully, I was not sure that she understood that we were going to look for a different hat, but she actually did. We walked around and she would stop and pick up different hats, examine them closely, then put them back with a sigh. Finally, a hat caught her eye. It looked nothing like the original one she wanted but she looked at over, and said, "I like this one." 

My inner me was celebrating as we walked over to the cashier (who had helped us originally and was quite surprised to see us return). RJC handed over the hat and the cashier was all smiles as she cashed us out, well aware that this was a win.

There has been no more talk of vanilla cakes or wishing for the other hat. She seems happy enough with the new plan and amazingly we seem to be past the issue.  For her to change plans about something important to her, especially when she has been talking about it for a while, is a very big deal. She is truly showing flexibility and acceptance of a different outcome than what was expected. In fact, though we could see she was getting a bit anxious (her voice gets louder, she states over and over again what she wants) her behavior never escalated past a general annoyance. Totally appropriate!

It is interesting that we still can never quite count on how she will react to change. Some days are just easier than others for her to accept a new plan. If we knew what it was specifically that was helpful in these situations, we would use that strategy every time. Whatever the reason, we are happy that in this situation she much less stressed than usual and she was pleased with the outcome. 

In the end, her plan for a vanilla cake with a specific hat became a chocolate cake with a different hat - and she is ok. 

A definite WIN!