A Not Very Exciting Update (A COVID-19 Post)

I realize it's been a while since I've written. So here is the not very exciting update.

I love getting calls and texts from family and friends and catching up on what is new. The thing is, not much is new. We are really in a holding pattern. We still take our walks, and we are still doing driveway visits and taking car rides to nowhere. RJC helps with chores around the house - and we have discovered that she does indeed know how to use the Swiffer and will do when so when she sees something needs mopping up. She loves her iPad and enjoys baking. Once in a while I can engage her in something artsy thought admittedly that is not my personal forte. 

We did have two fun adventures to the beach! There happens to be a special needs beach just about an hour away and we went one time on a hot summer day, and a second time on a cooler day. Both were a nice escape and it was fun to do something different. It is very COVID-friendly. There were not many people so it was very easy to stay the minimal 6 feet apart. In reality, we hardly saw anyone so that was never even an issue. Reservations are needed and they assign each group a specific spot (no more than four people per group). We had friends meet us there in their own car and we were easily able to chat while social distancing. It was a beautiful and relaxing setting and watching and listening to the waves was a treat. 

It was also nice to be someplace different. One of the more difficult issues we are facing as time marches on is that we continue to have the cloud of COVID hanging over us. Our days are almost frighteningly the same and we do not see many people. RJC does not wear her mask for more than 15-20 minutes so we are very limited in where we go indoors. Even with a mask, I am not particularly comfortable indoors with other people around so that really limits us. I have some serious concerns as Fall seems to be passing quickly and at some point we will be dealing with ice and snow and cold. None of those things are on my "favorites" list and I hate the idea of being stuck inside, day after day.

We did think ahead to winter and ventured out to buy snow boots and warm coats. The plan is to still be outdoors at least for a little while each day. Maybe not for as long as we can be now but I think the key to sanity will be found in nature. There is something both comforting and "normal" about hearing birds, seeing squirrels and chipmunks, and the smell of the great outdoors. 

We have definitely had some bumpy days. I often do not know the source of her angst which makes it particularly difficult to "fix" her issue. Those days seem to come in clumps and then we have some really great days that follow when she is giggly and happy. Some of this may be related to allergies - at least that is our current theory. Her OCD tendencies are also going through the roof. She has spent hours rearranging her video tapes. She also like to rearrange our kitchen cabinets and the food in the refrigerator. While that sounds lovely, it can also be a mighty big pain in the neck to not be able to find anything where we originally put it! The really problem is that she is beyond bothered by little strings on her clothing. She is constantly picking at them (some that I cannot even see) and ultimately rips her clothing then throws it out. I am not a shopper even in normal times, so this has been a definite problem. 

I do wonder if this COVID craziness will effect RJC in the long run. I do believe she is amazingly resilient. She has shown that time and time again so it is my prediction that she will be just fine. Still, I'm her mom and I worry.  I worry about all of us actually. We are living in an unusual time to be sure. It will be wonderful - and weird - to be able to come and go in buildings as we please. To walk through stores in whatever willy nilly direction we choose. To see people's full faces - not only their eyes and hair. 

The bottom line is that we are doing what we need to do, we are generally happy and we are making it work. 

Hoping the same for all of you. 

Taken from my FB Page ( A COVID-19 Post)

RJC just asked me, “Is it a stay home September with you?” When I said “yes” she nodded and continued on with what she was doing. It appears that she is adjusting to this “new normal” and while it certainly is easier than when she was fighting it, it makes me sad. This past weekend I had to let her know we could not go to the Aquarium or the Zoo. Both of her favorite places were in her calendar for this month. I had dreaded telling her (worked myself up into quite a tizzy) and Hal and I had talked about different tactics to use. We finally settled on the straight talk. I listed all of the places we couldn’t go anymore that she already knew about, then added “and no more Aquarium or Zoo.” She stared at me a bit then went to her calendar on her iPad and said, “delete?” I nodded. She deleted. That was that. This pandemic has really made life complicated but this new complicit, passively- accepting-bad-news behavior has oddly made me sad. Is that where we all are now? Just a sad acceptance of the inevitable that the world we know it - the pleasures we enjoyed are no longer possible so - oh well? Ug. There is no guaranteed way to avoid getting sick but at the very least I’ll wear my mask, social distance and wash my hands without complaint. Because I want my old life back. I want to see and hug my family and friends, I want to go to shows and movies comfortably, I want to attend synagogue and share simchas and kiddush! Mostly I want to take my gal to her favorite spots with no worries about ending up on the news because she took off her mask. Just sayin’. And - I would love an end to the illness and deaths and divisiveness that we are bombarded with every day. I would love to not have anxiety about getting sick and trying to figure out who will take care of my gal (and though her sister is an adult I absolutely still worry about her like crazy), about my family members and friends getting sick, about all of the teachers and first responders’ health and safety, and really - globally - it is all such a concern. All of these feelings surfaced because my gal didn’t tantrum, didn’t hit herself, didn’t go through a wall. I know - I should be thrilled. But it made me sad. From here it’s time to move on with our day. Headed out for a ride with my gal then to a socially distant gathering of Friendship Circle moms. Life goes on in a weird way. But it goes on and for that - I will be grateful ☺️

Plans Interrupted and Finally a Date Night OR Finding a New Normal (a COVID-19 Post)

Plans Interrupted:

This week was not what we expected. This past winter we had signed RJC up for two weeks at her overnight camp and my husband was able to get vacation for both of these weeks (practically unheard of)! We were excited because these are the only two weeks we have when it's just the two of us, 

We had started to research vacation possibilities and had finally settled on where we wanted to go and found a hotel. At this point, the virus was in its very early stages. Our state was not yet sheltered in place, not many people were wearing masks, and all businesses were still open. We were, however, beginning to hearing more about it and decided to wait and see what would happen. It was just a few short weeks later that things began to explode quickly and we put our plans on hold. Though still hopeful, as the weeks went on it became obvious that our gal was not going to camp and we were definitely not going on vacation.

Finally a Date Night:

It has now been four months since RJC and I have been together at home. Other than my once a week grocery shopping trip we are literally together. She cannot be unsupervised and we are not comfortable going places as she has not mastered wearing a mask for more than 15-20 minutes (though we are working on it). This week we asked our younger daughter, NMC, if she is comfortable watching her sister for a few hours. My husband decided to take one of his two weeks vacation and the idea of having just a few hours together, by ourselves, was just too good to pass up. She immediately said yes and lo and behold, we had a date night.

Now this may not sound like the biggest, fanciest date on the planet but to me? I may as well have been Cinderella at the Ball.  First stop? Coffee! The coffee shop we hoped to go to had already closed so we went to our regular standby. We found a parking spot in the shade and sipped coffee while chatting. Uninterrupted. We mostly discussed the future, especially RJC's future. We had a great deal of "what if" situations and eventually settled on the fact that we could not make plans now because things were changing on a daily basis. We discussed the fact that whatever we decided would be for her benefit and not for ours. We would not necessarily do what is easiest but what we think would be most meaningful to her. It is somewhat scary to think about how much she still depends on us to make every life decision for her. It has been 28 years and it will be forever. Forever that we are making decisions for her based on what we believe she wants, she enjoys, and allows her the best quality of life. Honestly. That is a huge amount of pressure. It is also what a parent does - for as long as their child needs. We concluded the conversation by realizing that right now decisions cannot be made much in advance as things change in our world on a daily basis. Still, it was nice to have expressed, out loud, philosophically what we both wanted - for her to be happy, safe and healthy.

From there we were off to husband's eye doctor appointment. I waited in the car and had a conversation online with a good friend about our girls. It was nice to be able to do so without interruption. I could think before I wrote. When we were finished, I read. It was quiet in my car. There was literally no noise other than my own breathing. I started to drift off from my reading and just sat with nothing in my brain. It was an odd feeling but I was starting to (gasp) relax. He came back to the car and we were off to...

Dinner! We chose a restaurant where we could never bring RJC and where we could eat outdoors. We checked out the area first and noticed that the servers were all properly wearing masks and gloves. We looked to see if there was an outdoor table with plenty of space. This was our first time eating out and it was pretty strange. Once we were settled, we were just so happy to chat. We chatted about all sorts of things - but not about our kids. Sometimes we just sat quietly and appreciated each other's company. It was lovely. There was a nice breeze and awesome company. We enjoyed it so much we checked in with NMC to see if she needed to get home or if we could continue our date. With the green light to continue, we went to...

An outdoor mall! It was not busy at all. We could walk without our masks and when we got to the one spot where we saw more people than we had hoped, we simply turned around. We zipped into one store for something I needed for our house and then - CHOCOLATE! The store was going to close shortly but we made it! Hubby was happy with his dark chocolate and I was thrilled with my large chocolate pretzel with small peanut butter cups on it. We found a bench to sit on, across from a restaurant that was playing mellow music through speakers. We may have snuggled a bit, sitting close together with his arm around me and just - being us.

All good things must end, right? So it was time to head home. We chatted a while with NMC before she needed to leave. RJC had a great evening and was perfectly content to hang out with her sister. NMC brought her dinner over and they did some baking together. It reminded me that we need to find ways to have some sense of normalcy when we can. NMC said she'd be happy to come over more often and stay with her sister so we can go out, even if just for a walk or to run an errand together.

So, though our plans were interrupted, in their place was this wonderful time together. I wasn't two weeks, it was four hours. It did not matter. It was exactly what we all needed. Hubby and I needed time together and some quiet. RJC needed time with her sister and enjoyed her time without me hovering around. 

This virus has changed life drastically for us and so many, but today?  Though our plans were interrupted we found a new normal. Date night may look different but it is just about being together. And so we were.

Tired but Still Kickin' - (a COVID-19 Post)

Here we are, mid-July.

RJC has been out of her Day Program for approximately four months and we are unsure when she will be returning. For now I am being a bit like Scarlett O'Hara and I'll think about that issue another day. For now, we have been mostly doing ok with some continued bumps in the road. Some bumps are small, others are more like boulders, but mostly I would say we are someplace in between the two.  

I am making a conscious effort to focus more on the positives than the negatives because it helps me to sleep and because I do not want to be that cranky, negative person. It's not a character trait I like in myself and I definitely do not want to get caught up in the pouty, negative stuff. On the other hand, it is our reality so I'll share a few of the negatives we have been experiencing:

• She is often loud and I am not sure why that is. There is a great deal of very loud self-talking going on which then leads to yelling which then leads to slapping her arms and face, jumping up and down, kicking things etc. I am sure there is a source but I often do not know what that source is, so it appears to come from nowhere. We can be having a really great time and then...BOOM. This has happened pre-pandemic for sure, but it is occurring more often. 
• Other than the hour and change per week that I head to the grocery store, we are together. That is lots of together time. My concern is that she is getting very attached and it will be more difficult when we get back to some semblance of pre-pandemic time and she is with other people. There is nothing I can do about this right now, but it is something I think about.
• She is spending lots of time on her iPad. Lots. I feel guilty, then I don't. I imagine there are plenty of neurotypical kiddos on electronics these days. I do need to pay attention to when it's time to take a break though. Sometimes I just cave in and go with the electronics because she is quiet - and appears to be happy. I suppose that it's a negative because it goes against my general instinct to keep her engaged more in the community BUT the community isn't available so...
• She truly does miss going to her favorite spots - the farm, the Aquarium and the Zoo, especially. She is actually expecting to go to the Aquarium and the Zoo in the August as they are on her calendar. I haven't figured out how to handle that since they are indeed open but they have very strict guidelines that visitors need to follow. Unfortunately I do not think we would be able to handle those guidelines appropriately yet. This makes me both stressed and sad and soon I'll need to tackle this one.
• Her obsessive-compulsive issues are definitely kicking in. This has always been an issue but it has intensified. While at first glance it may appear nice to have an organized refrigerator and pantry, it has become a bit frustrating when we cannot find things we have put away. She moves all sorts of foods into various plastic bags and puts food we left in the fridge to defrost back into the freezer.  We are working on trying to talk her through this as well as labeling certain items with "Do not move." She is also spending time with her hundreds of videos, moving them from here to there and back again. It isn't a problem per se, as we certainly do not care what she does with them, but it is an added issue that we can see is bothering her so much that she is compelled to move them around yet again. 

Now the positives. I have been thinking about this quite a bit and at first I was so deep into all the negatives that it was hard to come up with positives. Once I started, though, I was surprised to discover that this time does indeed come with some advantages. So here is the flip side of our reality:

• Her language skills are improving. Over the years I have fallen into a habit of trying to extend a few phrases into actual sentences. Much of the time we spend in the car on our "rides to nowhere" she is communicating about what she sees. Instead of just saying "yes" or "ok", I will give her a short response and then I will try to ask a question to keep the exchange going. I have noticed that her grammar is generally improving and that she is a very willing participant in back-and-forth verbal exchange. She may still be scripting but she is also a bit more impulsive in her use of language and she is beginning to self-correct. Sometimes I need to remind her to slow down and that often helps her to gather a thought.
• We are exercising! Every morning we are walking about 1 1/2 miles and we have hit the 2 mile point a few times. We tend to walk at the same place so we often see the same people there and they are beginning to recognize her. It is beyond heart warming to see her give somebody a big "Hi!" followed by some sort of compliment ("I like your hat" or "I like your pretty yellow sneakers"). Just as heartwarming is when they reply back or when they initiate a greeting! She looks forward to going in the mornings and usually after our walk we each have a bottle of water and we take a short drive through town. It is nice to have a routine like this to start our day.
• She is eating more healthy. It is easier to skip buying certain foods when I am the only one at the grocery store. Instead of baking cookies or a cake every week, we are baking once a month. We also have gotten into a routine of having an apple for a snack. My husband thought of using a bit of protein powder in her pancakes. She's even eating hamburger (I have no idea why but I am not complaining). Also added to the list of healthier foods these days are bananas and humus. 
• She is enjoying driveway visits. We take a ride to visit face-to-face with friends, from an appropriate distance away. It has been enjoyable for her to see familiar faces. We sometimes get out of the car and set up chairs (I keep them in the car now - just in case we have an impromptu visit). She has never said "no" to a suggested visit and she is happy as a clam to hang out with people. She has been especially happy since we have been able to see grandma and grandpa!
• The saying, "it takes a village" definitely applies here. She has received cards and gift boxes from various friends and it makes her day to see her name on an envelope or box. She does not necessarily understand where they are coming from but she thinks it's a blast to open something. Getting the mail every day is one of her highlights and this mom is very grateful to all who have thought of her. 

Our days are not particularly interesting nor are they particularly varied, but we are definitely trying to make the best of our time. I so wish I could get a peek into her brain and figure out how she is processing all of this. This major life style change, of which she has no control must be puzzling. Yet over time, she has managed to figure out that life is different and she has even found ways to make her days more routine - something that she strives for and thrives on. She is generally content, if not thrilled with the situation. 

I wonder if there will be long-term effects on her that we have not considered. Of course, I wonder that about myself, the rest of our family and friends, and everyone in the world who is finding their way through this time. Yet this is out of my control, so I will continue to focus on the positives and try to find even more ways to make this a positive experience. It is definitely challenging my mama skills. 

Would love to hear positives in your lives right now, so please...share!

Going Backward to Move Forward (a COVID-19 Post)

It occurred to me today, as I was driving around aimlessly with RJC, that I had done this before. Many times and years ago, when my gals were toddlers and preschoolers we had done this - hopped in the car and just drove around with no actual destination.  Circumstances are such that I find we are doing it once again. 


The summer when RJC was five years old, and NMC was two years old, was a hot and muggy one. We had no air conditioning in our home and my mom had been laid up - I believe she had hurt her foot - so I was on my own during the day with the two girls. At that time, RJC's behavior was volatile and she could run incredibly fast, not to mention she loved to climb and jump and was generally impossible to keep up with. On top of that she was lacking in both expressive and receptive language. There was a huge amount of yelling and tantrumming occurring. NMC was a mild mannered toddler, but a toddler nevertheless. It was not safe for me to be out with both of them by myself. One went one way, the other went the other way, and it was nerve  wracking trying to keep them safe. As a last resort, I would put them both in their car seats after lunch and drive around for hours. Usually NMC fell asleep and RJC was mostly happy enough to drive around while I played her music. It was the quietest part of my day.


Fast forward twenty-two years and I find that RJC and I are together, 24/7. There is only so much we can find to do with our time. We take a walk every day, we do some chores at home, sometimes we bake or she will "chat" with somebody on the phone, and then she spends a huge amount of time on her iPad - with Barney the Dinosaur, Sesame Street, Wee Sing, and Shari Lewis, to name a few of her favorites. Being home that long with little stimulation has lead to various behavioral incidents over very small issues, the likes of which we have not seen in years. She is truly lacking stimulation. What to do, what to do?


Without thinking through any details, I spontaneously asked her if she wanted to go for a car ride. She immediately responded 'yes" so we zipped out to the car and we were on our way. I put the Beach Boys station on Pandora (she does enjoy their music), opened the windows a bit and off we went. At first, she was asking where we were going. "For a ride" I replied. It took her a while before she stopped asking because usually when we are in the car we have an actual destination. A few times she asked "Where's dad?" and "Where's home?" I just kept telling her we were going for a ride then we would go home and then see dad. After a while of repeating that same response and as she had the time to process it she happily looked out of the window and began to comment on everything she saw. Everything.


"Look, it's a girl running exercise."
"The boy is on the bicycle."
"It's a city" (when we were coming down a mountain and she saw buildings in the distance).
"How many dogs? One, two, three, four!"
"It's a big truck and construction."
Each time she made a comment, I would respond in some way. If possible, I would ask her a related question so that she would need to continue to use her language. It wasn't exactly "conversation" but for us, it's the closest thing we have.


Every once in a while we would enjoy moments of complete quiet then something would catch her eye and she would comment again. She seemed truly relaxed, was enjoying looking out the window and once in a while she would start to laugh. It's a wonderful sound, by the way. She has a great giggle and sometimes it grows into an actual belly laugh that makes me laugh in turn! It is a rare and delightful sound.


Today was the second time we decided to take a ride, but this time we included two stops at friends' homes. We pulled into their driveways and had some social distancing chats. She was perfectly content to say her "hellos" and answer a question or two. Other than that, while we were chatting, she was sitting and listening, looking out her window, and was content. Truly content. Never once getting loud, never once asking to go home.


I am not a fan of wasting time with her. Of course we have "down time" but we are also often thoughtful about what we will be doing or what skill we will be working on. These are unusual times, however. We do not have access to places where we can practice skills like waiting in line, how to order, navigating stores, etc. As she is not generally conversational and the one and only person she has long-term access to is me, her language skills are not getting much practice. While driving around in the car is not ideal, there is something to be said for having a calm and happy gal. Certainly watching her anxiety melt away as we drive up into the hills and twist and turn on the back roads, is a gift. A gift for both of us. Acknowledging her comments and encouraging her verbal skills is quite fun for me and often leads to new vocabulary. It is also nice to have exchanges that are not calendar related!


So indeed, hopping in the car for rides to nowhere has been a few days of déjà vu. At first I felt like we had regressed and I had somehow failed in planning ways to keep her engaged and continue to teach skills. Time to call a bit of a time out, cut myself a break, and see this time for what it is. These are difficult times for everyone. I truly do not know anyone who has not had moments of frustration, fear, or anxiety. Why would I expect that this would be different for RJC who literally has not one iota of a concept about what is happening in the world right now? Of course she is anxious. Nothing is the same, nothing is predictable, nothing is how it should be. For her, these rides are relaxing, stimulating and an opportunity to practice her language. 


No more guilt feelings here. Sometimes we need to go backward to move forward.

Update (a COVID-19 Post)

People always ask, "how are you?" when we first start chatting. HA. Well, that's a mighty loaded question. Here's the update on our family.


I like to think that I am a fairly even tempered, generally optimistic gal. I work through my anxiety - even laugh at myself - and I handle most of our complicated autism-related issues relatively well. I'm used to them, I have an amazing professional support team as well as a small army of wonderful people, relatives and friends, who care about our family.


This week I have not lived my best "Autism Mama" week.  It was rough. There was so much screaming and self-hitting from my gal, and there were some teary moments for me. I had to resort to giving her meds - something we have avoided for quite a while now. They are "as needed" and this week they were needed three times. Ug. Mostly I've gotten past that reaction and can be pretty stoic but this week was seriously trying. I've been trying to figure out why  I have had such a negative reaction and I truly believe it is the complete lack of control I feel. And lack of sleep. Usually, even when things are going awry, I can get a handle on what needs to be done. But this? Living with such uncertainty and a HUGE fear that we will get sick, is really playing into every inch of my anxiety. As RJC and I are very emotionally connected, I feel like RJC feels my mood and it is contributing to her difficult behavior.


In truth, currently the biggest issue for me is that if (G-d forbid) RJC should need to go to the hospital, she would not be able to have anyone with her. This is beyond a nightmare of mine. She has no communication skills for this type of situation - zero - none. If anyone were to ask her a question that happens to require a "yes/no" response, it is possible she will answer - BUT the answer would not necessarily be accurate and most likely she would not have understood the question. She would simply be taking a guess that "yes" or "no" was likely to make the person asking the question happy. She does not "do" medical procedures easily. If she has a cavity she needs general anesthesia and knocking her out is a problem in and of itself, even when we are with her, and if she sees somebody coming at her with a needle? Hoo boy. Not gonna be pretty. Then there is the safety issue. She is not about to stay in a bed by herself, she will be terrified to be separated from us, and the trauma she would suffer? I am not sure it would ever be able to be reversed. I have contacted DDS (Department of Developmental Services), the Governor, and my Representative. I am emailing and calling. So are so many other families around this state who have the same concerns.


So this morning, I woke up and my first thought was that it's a new month.  Then I decided to remind myself, "suck it up buttercup" and get a move on with the day. Reminded myself that yesterday was over and today was a new opportunity. Well, it's only about halfway through the day right now, but so far it's been significantly better.  Nothing has changed except my attitude. Now that sounds mighty simplistic, probably because it is. However, it's all I've got and I simply cannot continue the way I was. Taking care of RJC requires a clear head and a positive attitude so that's what I am doing for today. Just for today. I can do anything for twenty-four hours, right?


Amazingly, some truly lovely things happened today. Small things, but lovely things. First, it was supposed to rain all day, but the rain stopped and it was on the warmer side (60 F) so RJC and I were able to take our walk. We usually go a bit over a mile, but today we just kept on moving along and walked close to a mile and a half. Then I went through the drive-thru to get a cup of coffee and another car was trying to come in through a different entrance so I let her cut in front of me. When I went to pay for my coffee, she had already paid for me. Made me teary! Then when we got home, a package came for RJC with a  Sesame Street DVD for her that she's been asking for over and over. It wasn't supposed to come until Monday, but it was here! She was so excited to see her name on a package and when she opened it she literally kissed the DVD and said, "I am so happy." Melt my heart! Then Rabbi Shaya from Friendship Circle called her via FaceTime and it was one of the sweetest, most heartwarming interactions I've seen her have via technology. She knows him well and was beyond thrilled to share some easy "conversation" (he knows how to talk with her so it doesn't stress her out) and some Hebrew songs! As it also happens to be Friday night, I am looking forward to lighting Shabbas candles with RJC which is always a highlight for us. So there you go. A small change in attitude and a big change in how the day is perceived.


This are difficult times, no doubt about it. I also know we will have bad moments because that's just life. The point is - today has been a good day so far. I'll take it.

Dealing with Change (a COVID-19 Post)

Currently the entire world is dealing with a virus - a killer virus that we are still learning about and that has everything in our personal lives turned upside down. Businesses are closed (when possible, employees are working from home but there is a huge amount of people applying for unemployment - including me) and meetings are happening via technology, supplies such as toilet paper, paper towels, hand sanitizer, eggs etc. are limited. In our state, people are told to stay home unless there is an essential reason to go out. If you do go out, keep it limited to as few people as possible (one person to grocery shop, no groups over 10 people) and wear a mask.  Grocery stores are limiting the numbers of people who can be in at one time, have arrows to show shoppers which way to go in the aisles, have employees wearing gloves and sanitizing the belt after each order, and have put up plexiglass guards at the registers. Schools are closed and parents are helping their children navigate online learning. "Social distancing" is a new term - people need to keep a minimum of 6 ft. apart.


And that is only a few of the changes we are seeing - worldwide - not just local. Literally, this is our world right now.


RJC has been struggling but we are slowly adjusting. This is a Facebook post I shared today, as we are now in our second month of this new lifestyle:

It’s been an interesting and complicated morning with RJC. As she is extremely calendar oriented she likes to review all her planned future activities in the morning. This includes favorite trips such as the Aquarium, the Zoo, specific restaurants, visits to grandma and grandpa’s house, Special Olympics, her sister’s upcoming birthday, etc. Many of these have been on her calendar for months and those dates are approaching.
This morning I finally had to tell her that everything was closed. I started with showing her the Aquarium website which had the words “temporarily closed” in a paragraph. Then I reviewed the places she already knows are closed: school (it’s what she calls her Day Program), shopping, restaurants, movies, synagogue etc.

She just kept staring at me and I could see it was registering. I told her we could go in the summer (hoping that will be the case) and she should pick a new date. Slowly she started looking at the calendar and then began to change the dates to July and August. She kept looking at me after each change, with the saddest and most confused eyes ever.
It was both heartbreaking and a relief. Heartbreaking because she does not know what is going on. The confusion and sadness on her face was painful to me. A relief because she managed to handle it without hurting herself or me, or destroying property. Yes, there was yelling. But honestly, I want to yell too.
I’m also imagining that even this summer when hopefully things do reopen, the experience will be different. It is possible that some of the places she wants to go sadly may not reopen at all. I cannot imagine there will be large crowds allowed which will mean longer lines. There may be a requirement to wear masks. Perhaps there will be limited hours at first. All of these new circumstances will require relearning and adjustments for RJC. I don’t see an end to her anxiety and confusion and it just makes me so sad for her and other families in the same situation.
She is currently obsessing over the new
dates and I imagine this will be the major
topic of “conversation” - such as it is in our
house - for the few weeks. We will endlessly be reviewing the calendar and I will be trying to reassure her. The kicker is, I don’t actually know what will be and there is certainly the chance we will be needing to revise the calendar again.
So I try to remember this:
(Kohelet/Ecclesiastes)
Everything has an appointed season, and there is a time for every matter under the heaven. אלַכֹּ֖ל זְמָ֑ן וְעֵ֥ת לְכָל־חֵ֖פֶץ תַּ֥חַת הַשָּׁמָֽיִם

The Unknown of the Weeks to Come

We are in the midst of a complicated time in our country - well really, in the world. With this comes a huge amount of unknowns and as of today, my gal's Adult Day Program is closed for a minimum of two weeks. RJC and I will be buds, hanging out and...what exactly?


I am well aware that we are not alone. Schools, colleges and universities, community centers and daycares are closing. Broadway and Disney have closed. I expect that many other places will follow suit. I completely understand why the closures are taking place and I personally believe it is important to contain this virus and consider the lives that are being saved.


With that, I am looking at two weeks of loss of structure for my gal. She enjoys her Day Program and truly looks forward to going. She doesn't do much when she is home except watch videos of Barney, Sesame Street and the like on her iPad. Sometimes she ventures downstairs to watch her video tapes. She is certainly willing to fold laundry, empty and load the dishwasher, do some baking, and she makes her own breakfast and lunch. Still, I'm trying to figure out what to do with the rest of the hours that loom ahead for us.


I expect we will take a few walks outside and some car rides to nowhere. If grocery stores stays open we will venture in at odd hours, when there are most likely to be less people, as it is one of her favorite errands! Other than that, I'm not really sure what to do. I'm not a fan of crowds under the best of conditions, and with all of this going on I am happy to take a step back from larger communal gatherings. I can't quite picture what our days will look like. It's a bit daunting.


I'm also concerned that with two weeks home with me, comes an added degree of clinginess. As it is, she is happiest when on my hip (metaphorically speaking, of course). This past year she has made strides in independence from me, showing a willingness to hang out with her dad as well as her support team. Two weeks with mom though? I am not sure where this will leave us.


The first problem, however, is in explaining to her that she is not going to her program. I am not looking forward to that. I don't want to say that anyone is sick, as that could scare her. I don't have a date that she can return so that complicates the conversation. Luckily I have this weekend to figure it out and hopefully by Monday she will have gotten the general idea.


It's exhausting that at 27 years old, we are still dealing with the issues that people with toddlers and school-aged children are dealing with - lack of comprehension and the need for full time supervision.  It is what it is. I know that. But I am already emotionally tired just thinking about what is ahead.


From our family to yours - hope you are all safe and have a plan set to deal with the unknown of the weeks to come.


We are going to be winging it here.

Routine Interrupted

I am a fan of routine. I like to know what is coming, I like to know what I am doing, I like to know what is expected. Still, when change comes or some surprise occurs, I handle it well. It doesn't usually throw me off much. I adjust and move on.


RJC likes her routine. She counts on it. Over the years she has developed some flexibility if a change of routine occurs. This came with direct teaching and practice. Still, a change in routine is not something she is comfortable with and we never know how she will handle it. It can be a really difficult adjustment, complete with hitting herself, screaming, jumping up and down, throwing things, destroying property etc. It is also possible that a change in routine can be a minor adjustment, consisting of some yelling and perseveration which includes many, many repetitions about what the new plan is and every detail thereof.


Today was one of those days that walked the thin line between the two possible reactions. 

Routine Interrupted.

It's a holiday - President's Day. She had a regularly scheduled day at her Day Program, I was working as usual, but Hubby did not have to work.


Here's our routine on a regular day:
Hubby is up around 5:15 and out of the house at 6:20 or so. Now, this is a small thing but the very key to our problem this morning: before Hubby leaves for work, he will usually put my lunch in my car so I cannot forget it. Every once in while he will leave in the refrigerator. Keep this in mind for later ;)


RJC's routine on a regular days is that when she hears his wake up alarm go off it wakes her as well. She then listens until she hears him get out of bed. She comes in to our room, hops in his spot, and returns to sleep for 60-90 minutes. She gets up, plays on her iPad, helps with chores (usually either laundry or dishes), makes her own breakfast at 8 am, gets dressed, we brush hair and teeth, she gets her lunch (she makes it herself the night before) from the fridge, she gathers any recycling and/or ties up the garbage to bring outside, and we leave the house.


This morning was not a regular morning because Hubby was home. Though he tried to stay out of the way, his mere presence disrupts her routine. Since he did not need to be up early to get to work, he did not get up until 6:30. As a result, RJC slept later than usual which had her confused. She comes to our room while looking at her watch and is unsure of what to do. I say, "Do you want to lie down for a few minutes?" She looks at me doubtfully, says "yes", but a few minutes later is ready to get moving. Needs to get back on schedule. She plays on her iPad. There aren't any chores because our timing is off. She makes her breakfast, etc. Things are now actually moving along quite well.


Then comes the wrench in the works. Hubby had already put my salad in my car, but his salad will still in the refrigerator. The two salads are NOT exactly the same. His has more of a variety of veggies, and they are veggies that I do not enjoy.


RJC finds his salad and assumes it is mine. I explain that my salad is in the car and that this salad is dad's so it stays here. She is confused and not happy. Too much language, too early in the morning. In retrospect, I could have immediately taken Hubby's salad and put it in the downstairs refrigerator, then grabbed mine from the car but hey...it was early and I had already started down the path of no return.


She was trying to wrap her head around this salad issue. I was trying to explain the situation and we were both getting exhausted. She was getting loud. I was getting repetitive and feeling like a hamster on a wheel - round and round and getting nowhere. Eventually I did indeed take Hubby's salad to the refrigerator downstairs and said, "Let me show you mom's salad in the car." Eventually, I convinced her to come with me to the car, showed her the salad, and all was well. Mostly.


She was loud in the car, scripting from Barney and having a tough time settling down. Luckily it's a bit of a ride, so by the time we were at her Day Program she seemed relatively content. I would guess it was the realization that she was about to be in a place where she could anticipate what she was doing and what was expected of her.


It is so interesting how such a small thing to us can be such a very big thing to her. Hubby and I were quite thrilled that none of this resulted in a smashed wall, a thrown telephone, or any self-slapping. She was truly showing some
self-control. She was anxious and getting loud but was also trying hard to understand the situation and deal with it.


Progress for sure.


Food for thought. We have a tendency to allow her routines to take over without noticing. We all just fall into our roles. I also think that most families are like this. We all have our tasks we need to do before work or school within a limited amount of time, and the way we get them done in a timely manner is to find a routine that works and stick with it. Is this necessarily a bad thing?  Definitely not. This is the sort of thing that helps a family function.


For our gal, though, routine is a double-edged sword. On the one hand it is extremely helpful. Daily life is complicated for her. She struggles to get through a day. There is so much language she cannot understand which means so many things we ask of her cannot be explained. If her day is made easier for her by letting her have some control and creating routines to help her with that control, it seems to be appropriate.


On the other hand, life throws curveballs. If we do not prepare her for changes or surprises, we are not preparing her for the long term. At some point she will probably be in a situation when other people will need her to make a change in her routine. A world when Hubby and I are no longer here.


So - time will tell. We will need to give some thought as to how to best help her develop flexibility while still allowing her to have comfort in her routines. Tricky? For sure. Important? Absolutely.


Ironically, we need to make flexibility a new routine.

Finding Significance In Our First Walk of 2020

January 1st is always the start of a secular new year, but it often doesn't feel that way. For me, it is simply a continuation of endless days in a row - work, family, chores, a bit of fun, repeat. This year was different. For one thing, this year was our first since having children that we spent New Year's Eve and part of New Year's Day alone. Youngest was working an overnight shift last night and then she went back to her own place, and RJC spent the evening celebrating at her summer camp. It was the first time we decided to sign her up and give this try (and may I add, she did great)!


The second difference occurred because we decided to take a walk since we had a few hours before we needed to pick up our gal. It's winter here, about mid-thirties. We dressed appropriately and took a ride to a spot where we had never been. We have always enjoyed taking walks together but 2019 threw us a bit of a curve ball in that Hubby was dealing with a medical issue so he was unusually tired. As 2019 was coming to a close, we had spent almost the entire year with him needing to have tests, office visits, procedures, specialists, treatment, etc. and most were about an hour away. It was tiring and stressful and complicated with RJC needing constant supervision but now the year was winding down, he is in a much better place medically (thank G-d) and we are beginning 2020 with all things pointing in the right direction.


As we were walking along, we were holding hands and he was leading the way, gently guiding us around and over slush, mud, puddly spots, patches of snow. When we hit ice (and by "hit" I mean we both went slip-sliding) we turned around and navigated back. We saw some lovely views, we appreciated the quiet, we acknowledged a few fellow walkers we happened upon, and in general just enjoyed the cool air and each other's company. I reflected on how this walk mirrors our life together. We go hand in hand every day, navigating different obstacles.


So what was so significant about this specific walk? As we walked along, I started to feel better than I had in a long while. It was almost like the fresh air was offering a fresh start. Now, this may sound a bit odd (and hopefully nobody is offended) but in the spirit of sharing truthfully, I will share what I was thinking as my mind was wandering all over the place. First and foremost, I was thinking how happy I was to be walking with my Hubby who was feeling good and energetic. Then as my mind wandered, I was thinking about how in our religion, people will take a walk after sitting shiva (a certain period of time after a person's death when one is in mourning ) which basically indicates that they are reentering public life. I also thought about, how on Rosh Hashanah, we take a walk to a natural body of water and symbolically throw away our sins, giving one a new start. This walk became that significant moment to me, when we were getting our old normal back. It was becoming a way to let go of 2019 and look ahead to 2020, resuming our activities that we love doing together - like our walks.


It is funny how a small thing like taking a walk can have such a big emotional impact. In truth, I was having difficulty feeling any comfort level with the fact that he was feeling better. I was always watching him carefully, making sure he didn't do too much or that he wasn't pushing himself to quickly to heal. It was difficult to allow myself to be comfortable with his healing process, to trust the doctors and the process.


Until we took a walk.


Now I would guess that when my Hubby reads this (and he will, because when I write about him he always reads what I write before I publish it - seems only fair) he will think I have lost my darn mind. I am always overthinking and over worrying (which I admittedly was doing) and while he does his best to help me control it, it's who I am. So I would bet that he would never in a million years think our walk was anything but a walk.


For me, it was a beginning.