A Communication Win

 My husband will often reference this saying:  "When you're up to your a** in alligators, it's hard to remember the original intention was to drain the swamp."  

That's pretty much how we live each day. RJC was basically non-verbal until at age 4 1/2 or so she started to say some words. Now I would describe her as "low verbal" for lack of a better description. She does have words but her sentence structure is funky and she often relies on
"scripts" from various videos to try to get a point across. She also will sometimes put words to a special tune or she will use the "Roses are red, Violets are blue" poem as a starter then fills in her own words at the end, because those are ways that seem to help her organize her thoughts. Still, this limits her communication ability significantly so there is often agitation, confusion, miscommunication and general chaos going on around here. Sometimes it's low key but it's always there, lurking in the background.  This creates a sense of unease and we tend to feel like we are always waiting for the "other shoe to drop." The majority of this comes from the fact that our gal really has so much to say in her head but when she tries to express herself she does not have the words. On top of that, her understanding of what we are saying is limited so sometimes, even when we are agreeing with her, she is not aware of it and gets frustrated. When she gets frustrated, she yells which will sometimes escalate into hitting herself (arms and face) or, at her most frustrated, pinching others (usually me). It is heartbreaking. We know she is incredibly smart, but the language barrier is real and severe and constant. 

Every once in a while, she has a really good moment and we have what is very close to a meaningful conversation. That happened this morning.

We love to bake challah (a special type of bread that we make for Shabbos - Sabbath). We usually bake plain challah, but this week I decided to make three loaves instead of two, and experiment by making one with chocolate chips. RJC is not a chocolate fan but both my husband and I are, so I wanted to try it.  

This morning she was looking at the chocolate chip challah but she really wanted a piece of plain challah. This can normally lead to frustration on her part and she'll start to yell while we are trying to figure out what the problem is before it escalates. Instead, our interaction went something like this:

RJC is standing in front of the box that we put our chocolate chip challah in and she is pointing:

RJC:  No chocolate chip challah.

Hubby: I think she wants plain challah.

Me:  RJC, do you want plain challah?

RJC:  Yes, please.

Me (to my husband): I could go downstairs and get one of the plain ones from the freezer. 

Husband: We have a few frozen pieces up here.

Me: (getting the plain challah pieces from the freezer and showing her):  RJC, is this what you want?

RJC:  Yes please.

I give her the plain challah and she puts it in the box with the chocolate chip challah and start to leave the room.

RJC: I need bags please.

Husband to me:  She is pointing to the chocolate chip challah.

Me: (knowing she likes to put challah that is cut into sandwich bags): How many bags do you need?

RJC: Two please.

I hand her the bags and puts the challah pieces in the bags then bag into the box.

RJC:  Look. (Points to the chocolate chip challah): This is for mommy and daddy. (Points to the plain challah):  This is for RJC.

Me:  Great job! I love that you used your words so nicely.

When I sit down, she walks over with the bags of challah - both chocolate chip and plain ones. She hands them to me along with a marker. I know exactly what she wants me to do, as this is part of her OCD routine. 

Me:  What do you want me to do?

RJC:  Names please.

I write "Mom and Dad" on the bags with the chocolate chip challah and RJC on the bags with the plain challah. She holds them up and I know she wants me to take a picture. I do, and she happily puts away the challah.

As I was moving on with my morning, I couldn't stop thinking about this. I realize that I am so relieved that we had an issue that we were able to communicate successfully about - and then I realize what a gift this is and how hard she had to work at it. Well, really, how hard we all had to work at it. We cannot be distracted at all by other things when she is trying to communicate. We literally need to stop what we are doing and pay attention to her and though sometimes is difficult to do, if we have any chance of a successful interaction with RJC, we need to be all in.

The best part of this entire interaction was to see her relax as it went on and she realized that she was getting what she wanted. No voices were raised, there was no yelling, none of us were getting agitated. 

A communication win for sure! 

Time Away

We had a plan. 

RJC was going to go to her special needs overnight camp for two weeks, for the first time since the summer of 2019. She had been a camper there for quite a few years, though she had not gone in 2020 or 2021 due to Covid. The plan was that we were going to "staycation" for the first week because I am too anxious to be away when she first goes to camp; annoyingly so as we have learned from past experience. The second week we made reservations at a hotel about two hours away, and then we were going to visit friends for two nights before picking her up at the end of the camp session.  You know what they say about the best laid plans.

The first week was cancelled due to Covid issues and we were on edge waiting to hear about the second week. We do not tell RJC about camp until the day before she leaves so at least there would be no unnecessary anxiety if camp was actually cancelled. I had been storing her camp clothing and items at a neighbor's house so she truly had no idea that she may be going. Near the end of the first week, we did receive an email explaining the steps they took to make camp as safe as possible, and the second week was on. We let RJC know she was going to camp and we were quite excited to know we would still be able to have some time by ourselves. In the past couple of years we had gone alone for an overnight for less than 24 hours. We had been looking forward to a real vacation.

We dropped her off at camp and about an hour later, after taking care of administrative issues, we were on our way.  It is always a bit...weird...to find ourselves alone for any extended period of time. It takes time to get used to the quiet, takes time to realize that we can eat where and when we prefer, it takes time to remember we don't need to use "code words" or pantomime to communicate. I'd estimate it took about a day for us to adjust and we truly made the best of our time together.

Our hotel was very close to the water, so I was able to meditate outdoors in the morning, we went for walks, to a museum, on a sailboat (a replica of an 1812 privateer schooner), visited the oldest candy store in the U.S., toured a famous home, had ice cream (of course!), and I even bought...clothes...GASP! We met a friend we hadn't seen in thirty years for lunch - special for sure. The weather was gorgeous, and it did not take us long at all to find our groove. Amazingly, I had zero anxiety the entire time. We felt good about her being at camp as we have kept our world very small these last few years and we wanted her to have this experience to be with other people and to see that there really is still a big world out there.

The last few days of our vacation we spent with our very good friends - you know - the kind of friends who are more like family. It was fun and relaxing! A great afternoon spent on their boat, lots of yummy meals, took a nice walk, and chatted the days away. It was such a great ending to a great week and the time seemed to zip by.

When we dropped RJC off at camp, we set up a schedule of times she could make her calls and told the staff she could call us or her sister. Each call she made was to her sister. Now one may think we would be upset, but in truth, it made our hearts happy. They have a very special bond for which we are always grateful.

The week came to an end, and we picked up our gal from camp and headed home. We were all quite tired. The best news is that she did great at camp - we received no phone calls about any issues! A first in all the years she'd been going!

We have only been home one day, and we can see she is trying to readjust to being home. She is somewhat frantic about organizing the refrigerator and going over the calendar. She's been loud at times, and we are trying to readjust to that reality. Admittedly, it is a tough one. There is pretty constant noise around our house.  

That being said, there is a comfort and familiarity in having her at home. She is looking forward to getting back to her consistent schedule.  Hopefully her short time away enhanced her feeling of independence and made her more confident and comfortable about being with other people. For us, it helped us to appreciate the importance of spending time together. We have resolved to find more opportunities for her to practice independence and for us to have time for us. Now to actually do it...

An Unexpected Adventure

We were trying to remember our last vacation with RJC and we are fairly sure it was in 2019. Things have been dicey here with lots of yelling and obsessive behaviors and it so happens that circumstances changed, and we had the opportunity to get away for a few days. It seemed like a change of scenery was in order for all of us, even if it was only going to be for two nights.

The first issue was finding a place to stay. It was last minute, in the summer, so we were not sure we would be able to find any place with rooms available. We wanted to spend most of our time outdoors and we did not want to spend a huge amount of time in the car. Amazingly, we found a hotel just two hours away and the rooms had their own doors leading outside - so no walking through hotel lobbies. 

RJC was anxious about leaving but once she was settled in the car, stuffed animals in hand, we were on the road and she was happy to watch her DVDs. We stopped for lunch at a lovely spot on the water. It was a bit rainy, but we found an outdoor place with a covering. The employees were beyond accommodating so we were off to a decent start. RJC was a little anxious as she was so far out of her routine. We were worried that with the rainy forecast we would be unable to do much outdoors and since she refused to bring her iPad we were not sure how this short getaway would go (she only uses the iPad in our house, in a specific spot) but we were all in, so after lunch we continued on our way to the hotel.

We made it to the hotel, really enjoying the ride. The mountains were green and beautiful. The rain was annoying though luckily it was fairly light and not constant. We stopped at a farm which turned out to be...struggling. Still, we had the opportunity to walk a bit and we saw a few goats (oh my gosh, one of the baby goats was so adorable, trying to walk up a board and sliding down instead). We realized fairly quickly that there wasn't much here for us and RJC was fussing, so back in the car we went and headed to the hotel.

We were slightly disheartened, but we were able to adjust. It was rainy for about a day and a half, yet we found things to do and places to eat outdoors under cover or we brought food back to our room. The room itself had a nice deck and when it wasn't raining it was a lovely place to sit and relax. We had a visiting chipmunk who hung around for the two days we were there. RJC loves nature - sitting outdoors for her is relaxing and she is often more settled when we are outdoors. We were in a beautiful state - very green and plenty of open space. 

Many of the places we went were family-owned businesses rather than large chains. We went to a small mini golf place with an arcade and other than seeing one other family briefly, we were the only ones there. At that point it was still raining, so we only played in the arcade. RJC shot basketball hoops (she is quite good at this), played skee ball, and a few other games. Hal and I played air hockey (so much fun). None of us cared about the little prizes we could choose from, so we left our points there for the next family to use. We went to a "country store" that was huge! I am not a shopper - in fact, the thought of shopping makes me cringe - but this place was great fun and I could have spent hours there. RJC, however, was having none of it, and was getting loud and anxious so we left. We were able to play mini golf once the rain stopped.  For the record, I could have done without the snake that was hanging out in the water on the first hole - yes - an actual live, big, creepy snake. Of course, with our family, ice cream is a necessity and there were plenty of places to find it. The highlight of our visit though...The Chocolate Shoppe! Major score! 

RJC had some difficulty adjusting initially, but as the weather cleared so did her mood and she ended up seemingly more relaxed than when we first arrived. She slept fairly well though I am glad we were not in a big hotel as she was up sporadically (4 am, 5 am, 6 am...) and would get a bit loud for short periods of time. Luckily, we had an end unit and she and I did not sleep near the wall shared with our neighbors and since we never heard of any complaints, we assumed they were either heavy sleepers or we were far enough from their room that they didn't hear her. Phew. 

On the way home we stopped at the same place where we had lunch on our way to vacation. Once again, the employees were amazing, and we made a nice connection with a woman who worked in a local school as a paraprofessional. We chatted about our families and life in general and it was one of those moments where I was certain that we were meant to have these days for our family. Although it was a spur of the moment idea, it was also a necessity to get away, even for just a few days. We had been quite isolated for these last couple of years and though we did not actually interact with many people on a personal level, we saw people while we were out and about, we would nod, smile and wave. It was a nice reminder that we are still part of a bigger world even though our world at home had grown incredibly small. 

An unexpected adventure, well worth the time and effort!

The "What If" Rabbit Hole

6:15 AM or so:

RJC loves to help around the house. This morning she was emptying the dishwasher while I was in the next room. She came to me holding two pieces of a broken glass and said “Oops. Sorry Mommy.”

Luckily it seemed to be a clean break into two large pieces. I gently took it from her and explained that I needed to vacuum the kitchen and that we both needed to put on shoes.

She was not happy. She wanted to finish unloading the dishwasher. She could not grasp the danger of a possible piece of glass on the floor. She had a mission and she was not at all pleased that her mission was now being delayed.

I was patient and continued to gently lead her out of the kitchen, telling her to put on her shoes. At this point, trying to make her understand the danger issue was second to getting her out of a dangerous situation. Yelling all the way, she did as I asked while I took advantage of the time she was out of the kitchen and started to vacuum. Having been distracted by the shoes, she let me finish vacuuming then went back to her task of unloading the dishwasher.

It is sometimes a jarring reality for me to face the reality that at 30 years old she is toddler-like in her lack of abstract concepts (such as danger). Of course this sets me up for a swirl of concerning “what if” thoughts.

“WHAT IF she hadn’t told me she broke a glass.”

“WHAT IF I wasn’t here and she was with somebody else. Would she have shown them the broken glass?”

“What if something else happens today that puts her at risk?”

Etc etc and so forth (as the King of Siam would say).

So yes, my initial reaction was to go consider all the awful possibilities but I had meditated this morning and read a bit of Psalms so instead of going too far down the “What if” rabbit hole I decided to go someplace else:

All is well at this moment.

She did the best she could.

I did the best I could.

And now we can both move on with our day.

May we all be safe and avoid the “What if” rabbit hole.

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Turning 30: Sometimes Ya Just Need a Party!

It has been a very busy time here as RJC just turned 30 years old. 

I truly cannot believe that time has gone by so quickly. This was an emotional event for me. Somehow, as long as she was still in her 20s it felt like we still had plenty of time to teach her things that would increase her independence and things she would need to know when we were not around to support her anymore. Somehow as the number 30 was getting closer, I was feeling more and more anxious as it seemed like she was about to step firmly into the category of "adulthood" and that my husband and I were clearly getting older as well - as proven by the additional medical tests and vaccinations ordered by the doctor ;) 

So, I had this idea that we needed a party to mark the occasion and flip my thinking to put a positive and joyful spin on this birthday. Initially, the thought of a party created even more anxiety. We usually celebrate with just our small, immediate family. We needed to think about it. Who were her friends? Would we be able to supervise a group when we had our hands full supervising RJC? What would she and her friends actually do at a party? We wanted it to be outdoors, so what would we do if it rains? On top of that, party planning is so far out of my wheelhouse that I knew it would create added anxiety instead of letting the joy in.

Talking it out, I realized that the majority of her time that she has spent with peers in these last two years has been with Friendship Circle - a Jewish organization that supports children and adults with special needs. They have been our lifeline. I gave them a call and explained what we were thinking and after checking to see if some staff could help us out both with being a planning resource and to help at the actual party, we had the green light and we were planning a party. I also checked to see when her Jewish birthday was this year (the Jewish calendar is different from the secular one) and we decided to plan her party on her Jewish birthday. Between a few conversations and many texts...a party was planned. 

We invited those who she had been seeing at events these last few years as she knew them well. We wanted them to feel comfortable and bring family members and/or others with them so they would have support if needed. Also, their parents are others who were part of their support network were our friends as we share our journeys with one another. We decided to have it in a space that all of the participants were familiar and comfortable with, and it could be moved indoors if necessary. I appreciated the support and guidance around how to do evites (I felt very techie), supplies needed, etc. We decided to keep the party to one hour so as not to overload our gal. My many questions were answered with patience and encouragement. Or course, RJC's sister was coming, and she was happy to help on the day of the party. It was all coming together.

The day of the party arrived and by then I had gotten past anxious and truly looking forward to it. We had hired her music therapist for a musical component (by far she is one of RJC's favorite people and music is a great love of hers), a face painting artist (or hand painting or whatever worked for the individual), had some sidewalk chalk available if anyone was so moved, as well as a big card that everyone could sign so she would have a keepsake. Being that this was her Jewish birthday we kept the tradition of giving tzedakah (charity) and supplied people with quarters for them to put in the tzedakah box. This was familiar to all of the participants since they had done this many times at Friendship Circle events. For me that was a highlight - to watch her walk around with her sister and offer people this opportunity to give tzedakah. It was suggested that we have somebody take pictures so that we could just enjoy the party and that was one of THE BEST ideas ever.  We asked a teen volunteer who was interested in photography to be our photographer and she did an amazing job. We had cake and plenty of water since we were outdoors and BOOM! A party was had! 

On the way home I cried a few happy tears. It was worth the effort to have found a way toward celebration and happiness as our gal was hitting her milestone birthday. Chatting with parents and other adults who were there for RJC was great fun, but by far, the best part of the party was watching RJC having a wonderful time in her "Happy Birthday To Me" shirt and her face painted like a cat. 

Practically speaking, we are planning to meet again with our lawyer who specializes in Special Needs Estate Planning again, to update a few things and try to better understand how to best be sure that RJC will be taken care of in the future. Emotionally speaking, I have mostly settled into the idea that times moves forward no matter how I feel about it, so I should jump on the opportunity to celebrate and be joyful. 

Sometimes ya just need a party!

No More Apologies,

I have had people say lots of kind, well meaning, and interesting things to me about our daughter. 

"I don't know how you do it."

"I could never..."

"She has only gotten this far because of you."

"You're a Saint."

I never know what to say in response to any of these so I usually stutter around for a "thank you" because I am well aware that what was said is offered as a compliment and I appreciate that.
But here is what I think in my head: 

You could do it because there is no option.

Never say never. My mom told me that many times, and though she never said it in this context, it is fitting.

She has gotten this far because of HER. Yes, we were helpful, as were her many teachers and various other professionals, our family members who have never wavered in offering encouragement and support, and our friends who have listened to me vent and cheered her on. Ultimately, though it has been all her - who she is - resilient, stubborn, loud, smart, determined.

I am no Saint. Not even close. I lose my mind some days. I do not sleep well and I struggle with anxiety, pretty much on a daily basis. I mutter under my breath, I vent to close friends, I cry and yell to my husband, and I have many days where I have doubts about what we are doing or should be doing.

Our everyday life is complicated for sure and like all families we trudge through and hope for the best. We have issues with the mundane, everyday events. Going places takes a great deal of planning, talking over the "ifs" - if this happens what should we do and if that happens what should we do. Illness and injuries, even small ones, are complicated. We are not always sure what the issue is when our gal does not feel well. We are not always sure how she has gotten hurt - we only see the result - a black and blue mark or an infection that has appeared. We are not always sure why she is yelling or hitting herself and we are definitely not always sure how to help. 

A few evenings ago we were having a "regular" evening. My husband and I were watching a show with the subtitles on because our gal was on her iPad listening to her videos on YouTube. Many years ago we made the choice to take the computer out of her room and give her an iPad so that she would hang out with us in the living room. We did not want her be isolated. Unfortunately, the headphone use was an issue over time and they because a tactile problem. We have tried just about every type of headphone but she is miserable. So this is how we adjust. Not ideal but it works for us. 

In any case, it was time to give her some meds and get her into the shower. That means stopping our show while I get up to get the meds, then stopping again to be sure she gets in the shower. Then stopping again to help brush and dry her hair. Each time I would come back to the couch, say "sorry" and we would continue watching. The third time I came back and said "sorry" my husband turned to me and said, "You know you never need to apologize for taking care of our daughter, right?" 

WHOA. That was a revelation. I had not even realized I was doing it. I thought about it for a bit and it occurred to me that I often apologize for our daughter in many different situations - or for our own actions concerning our daughter - and perhaps I should stop (well, unless she dumps water on somebody or is incredibly disruptive, both of which she has done). She is who she is. We are who we are. Our family is what it is because we have made carefully thought out choices and we do not need to apologize for those choices. For sure, easier said than done. It is a habit.

Just the other day I took her to get a manicure. First time in years. We went to a place we have never been before and I was definitely feeling nervous. I did call ahead and gave a general heads up but did not go into much detail - just said I was not sure how it would go. The woman did not sound at all concerned so off we went. There was a tv on and amazingly it had exactly the type of show she likes to watch - a nature show all about large animals in the wild. Then she started fussing. Loudly. "Take off my bra?" "Mommy will count to three and take off my bra?" "All done bra!" I answered as usual, "When we get home" and tried to get her to focus on the tv show but to no avail. Of course the other customers had no idea what the underlying issue was and there was literally no way they were not hearing her loud declarations (and to their great credit, nobody stared or glared either).  In the past I would apologize and share her autism diagnosis. This time I shrugged and made a blanket statement, "Not much in our home is a secret." That broke the ice and the other customers were quite good natured, even amused, commenting that they totally agreed with her.

It was an interesting experience. Nobody was upset, nobody asked questions, nobody stared or glared because of the constant and repetitive chatter. In fact, it was a way for me to connect RJC to the group - something I never considered.  It was a good start to the "no more apologies" approach! 

Why it took 29 years for me to get to this point...I have no idea. I am not sure this is going to be life changing in any significant way, but it does make me feel as though I am giving RJC a bit more dignity and respect for who she is. That is important to all of us as a family but mostly I feel that it is important for her. We always make the effort to keep her happy and keep her safe. Now we are finding a small way to simply let her be her. Seems like the right thing to do.

Snow Day

 RJC and I are stuck home today. She loves being on her iPad but we have found other things to do as well!

Baked challah. She braided both of them.

Exercised. We like the HASfit videos on YouTube. Today we tried a short low impact video. It is complicated for her because they are facing us. So when they put a foot back, she puts her foot forward. When they touch a foot to the side and bring it back to the middle, she takes a regular, full step to the side. Even when I tried standing in front of her so she could do what I do she was unable to follow. I tried a hands on approach, literally moving her feet (as best as I could) but the coordination just isn’t there. Doesn’t matter though. She is still moving so I’m taking it as a win!

Laundry - she put the first load in. I’ll have her move it to the dryer. She has always folded towels and recently she has been folding all of her own laundry and puts it away. Have to say she’s quite good at it!

Lunch - she independently prepares her own lunch at the beginning of the week for every day. She’ll get her own plates etc. as well. She likes Cheerios with cheese, 3 party cake muffins and crackers/pretzels with cheese. She’s also very good about cleaning up after herself!

Planning to do a few “connect the dots” later.

What are you up to today?