Friday, March 1, 2024

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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Thursday, September 21, 2023

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. 

Monday, July 3, 2023

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. 

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

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! 


Tuesday, April 4, 2023

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!





Thursday, March 2, 2023

Yoga and Self-Regulating

When RJC gets frustrated, angry or anxious, her "go to" is to yell, jump up and down (landing especially hard on purpose), hit her arms and face, pinch me, etc. A few months ago, I had the opportunity to speak with an LPC (Licensed Professional Counselor) and we talked about the possibility of teaching her 1:1 using a modified version of Yoga. The goal would be for her to learn to breathe properly which should help her in situations when she needs to self-regulate. Other benefits would be giving her the opportunity for movement and flexibility and the added bonus of meeting a new person (socialization and communication) and having the experience of being in a new physical space that was set to feel calming.

It has been a few months and things are going well. RJC looks forward to going and is completely cooperative and invested when she is there. It has been interesting for me to watch. Before getting started with RJC, the LPC (I'll call her Sue for the purposes of this blog) asked me lots of questions about what the goals were, what RJC liked to do, the best way to communicate etc. Thanks to her dad, RJC loves Classical music (he plays it in the car for her) and she really enjoys The Nutcracker. Sue then developed a modified Yoga routine around the story of The Nutcracker. She would tell RJC the story with the music playing in the background and they would "act out" the story with modified Yoga moves. When they were finished, Sue would help her with her deep breathing and give her time to relax on the mat with the option of some light beanbags on her hands. Additionally, she could close her eyes and she had the option to put a beanbag on her eyes as well. RJC really loved the relaxing time and from the very start was quite willing to lay down quietly with the beanbags.

I was amazed at how quickly RJC took to both Sue and to Yoga.

Today I was even more amazed when I had the opportunity to witness the      real-life application of what she was learning. 

It was a difficult morning with an issue that had to do with two of her favorite things - baking and the calendar. She wanted to bake too much in too short of a period of time and she was not at all happy with me when I insisted that we come up with a better schedule. She was getting loud and repeating herself and I was quite concerned that her behavior was going to escalate. We worked through it (used visuals and reassurance) and once we had a plan that we both could live with and it was on the calendar, she looked at me and said, "Take a breath." Then she breathed in and blew a longer breath out, just as she was learning to do in Yoga. I joined her for a few more deep breaths and then we both sat quietly on the couch for a few minutes.

Ideally, it is my hope that RJC will learn to start her deep breathing when she first begins to feel negative emotions. In the past when I have tried to suggest it and model it, all it did was add fuel to the fire and her behavior would begin to escalate. This time, however, though she was initially yelling, she was able to gain enough control on her own to work out the issue with me and then realize that she was still feeling uptight and needed to breathe.

Today was a win. 



Monday, November 21, 2022

Overnights at Camp

While RJC spent a week at camp this week and my husband and I had a vacation alone, we truly enjoyed every moment. One of the things we also did, was to talk about what was working and not working for us as a family. We both agreed that one area we really needed to work on was finding time to be together - alone. 

We had been able to get a few hours here and there by ourselves, but anything more than that was simply not happening. We were talking about the obstacles involved and remembered that we had sent RJC for a few weekends at camp when they offer specific weekends during the non-summer months. She had even spent a New Year's Eve there. We decided to look at the possibility when we returned home from our vacation.

We found that there are camp overnights being offered, Saturday mornings through late afternoon Sunday. There is also transportation available which saves us a forty-five minute drive each way.  It also gives her the opportunity to experience traveling with friends (while being supervised) and an additional opportunity for independence. We looked at the overnights available and the themes that went with each overnight and chose the ones we thought she would truly enjoy. 

Seven weekends in all.

She has now attended three of the overnights and has been doing well. She is quite willing to get on the bus and has been reunited with a friend or two from her school days. She is sleeping and when she wakes up quite early, she is quietly waiting for the rest of her group to wake up. We send food along because she is quite fussy, but we have asked the camp to offer their food in the hopes she will try it. So far, she hasn't accepted their offerings (we have the same issue during summer camp). She participates in the various activities and enjoys bringing home her projects. 

We have always been hesitant to tell her about summer camp too far in advance and we have found that even with the weekends, two days ahead of time seems to be sufficient. The first overnight she seemed a bit agitated but still got on the bus quite willingly. The last two times we told her, she said "ok" and that was that!

While RJC is gone, we've been using our time well. On her first overnight we were able to meet our cousins for lunch. We hadn't seen them in probably ten years. It was such a wonderful way to spend a few hours and a true treat to visit with them. On her second overnight we went to visit friends who had recently moved from our town. We spent hours just chatting away (and enjoying good food) and it felt so nice to have the time to do that. This past overnight we stayed home. We went to the movies for the first time since Covid started! We also got a few errands out of the way that we simply could not have done easily had RJC been with us. As odd as this may sound, just being in our home, experiencing quiet for extended periods of time, watching tv without subtitles, choosing where and when to eat, sleeping with all of the lights out...it took a bit getting used to, but we were able to relax and enjoy each other's company while knowing she was happy and busy. 

Oh! And every time she has gone...we napped. Yep - catching up on sleep and reveling in the quiet was a huge bonus. It is also a reminder that we are getting older - but reality is reality. 

We are not yet sure what we will do when she heads to camp for her overnight in December. It is fun to consider the possibilities. Obviously, we cannot go far or plan anything extravagant, but we are ok with that. It really is about spending some uninterrupted time together and for her to have the opportunity to get comfortable being places without us and learning to communicate and have fun with both her fellow campers and the camp staff. 

It is really a win-win. She gains experience and independence, and we gain time to be a couple. 


Tuesday, August 2, 2022

Ten Year Blogging Anniversary!

Ten years ago today, I wrote my first blog post.  I have written 106 posts and the blog has been read 35301 times. I never would have thought that I'd keep writing after she turned 21 but I do find it helpful for my own processing, to put things in writing, and I very much enjoy hearing from those who have taken the time to read a post here and there. 

When I started writing, our gal was not yet 21 and she was still in school. We loved her school and the idea of her leaving was truly devastating. When she was finally outplaced it changed our family significantly for the better and losing that support was scary. We were also struggling with the idea that chronologically she was going to be considered an adult when developmentally she was considerably younger. Much younger. We were beginning the process of finding her an adult program which was stressing me out significantly. I've always enjoyed writing and my thought on starting this blog was first, that I could get my own thoughts more organized if I wrote them down. Second, that l may be able to educate others on the realities of our family life which would perhaps then lead people to offer a bit of grace and kindness toward families like ours and ultimately this would then lead to a better quality of life for her. In terms of helping me to organize my thoughts, this blog has met that goal over and over and over again. That being said, I am not sure much has changed in the big picture, in terms of attitudes toward autism and families like ours but I do feel that people who have taken time to read a post or two may go away with some bit of new information or a new perspective, and that is enough for me to continue to want to write. 

Life has certainly changed for our family since she turned 21. She has been in two adult Day Programs (the first was a bust) then Covid came along, and we made the decision to completely pull her out. Once she was able to be vaccinated (feel free to find that post as it was an interesting and complicated journey) we started to completely self-direct her program and three days a week she goes to a farm and the other two days she is with me. We have had behavioral supports over the years though currently that is less "official" and is more of an "as needed" basis due to administrative issues. 

What has not changed is that she is still living at home and will be for the foreseeable future. Her sister has moved out and is living independently nearby and is very much involved in helping to care for her sister. RJC continues to gain skills and I often shake my head and think about the professionals who told us she'd "never" (fill in the blanks with many verbs). Though I understand that was truly the belief back then, I am glad that my stubborn genes kicked in (trust me, the women in our family are stubborn) and instead of shrugging our shoulders and accepting that news, we did research, we fought the system when necessary, and we are still continuing to find ways to advocate for our gal as well as for our community. 

The big difference? I am SO much more tired than I was ten years ago. But we are her voice, so tired does not matter as the journey continues.

Ten years from now I cannot imagine what I will be writing, just as ten years ago I had no idea our journey will have led us to this moment in time. We are grateful to family and friends who have offered kindness, support, and love our way.