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.
Friday, May 1, 2020
Wednesday, April 15, 2020
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:
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.
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
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
Friday, March 13, 2020
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.
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.
Monday, February 17, 2020
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.
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.
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.
Wednesday, January 1, 2020
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.
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.
Sunday, November 10, 2019
Bumpy Days
We are having bumpy times. Like all families, we have good days and not-so-good days when we handle the bumpy times better than others. The not-so-good days for us are magnified when they include unexplained, difficult behaviors from RJC.
Recently we had a few days in a row where we could see she was experiencing a great deal of anxiety and agitation. How do we know? It is days of constant and very loud yelling, scripting from Barney, and the constant need to repeat the day's (and future days') schedule. It may not sound like much, but the constancy and loud volume of these behaviors make me want to pull my hair out. Literally. Instead, I have a habit of gritting my teeth and biting the inside of my mouth - neither of which are pleasant.
I am aware from experience that these behaviors could be much worse. In the past, these types of days would have been met with kicked in walls and physical aggression toward me and toward herself. In that sense we have made great progress and I am forever thankful to those who have helped us get to where we are today. Admittedly, I still never know if she will be going through our wall - sometimes we get lucky and she will bang it but not go through it - but mostly that behavior seems to be more under control than it was in the past. Nevertheless, when I see our daughter is obviously struggling with something and we cannot figure out what the issue is or how to help her, it is painful and stressful. That stress makes me cranky and weepy and most definitely whiny and while I would prefer to stay in bed and not deal with it, that is not an option.
What I tend to forget, as I beat myself up for feeling miserable, is that while all families have this experience, most families have a limited time period of this type of behavior. In a healthy situation, children are taught to express their feelings appropriately thus handling their emotions appropriately. Most children will not still NEED to live at home at age 27 because they are unable to take care of themselves (though they may make that choice). Emotionally, our gal is still a toddler in many ways and that is simply how things will be. This does not mean we will ever give up trying to help her find ways to express herself in a more healthy manner. It is simply a fact that she has a developmental delay that is significant and she always will.
Me, on the other hand? I am an adult with coping skills. So while I am cranky, weepy, and whiny, I am also capable of controlling that behavior so the only one who has to deal with it is my husband. When in public I can have a perfectly polite social conversation. I am able to go to work. Thanks to technology, I can avoid spam phone calls or put off chatting for a day or two until I'm in a better mindset. I am able to watch goofy tv that requires no brainpower which is a great way to avoid the world for a bit. I am able to exercise at home and while I've never been a huge fan of the "E" word, I am finding ways to make it work for me and yes, I find it helps.
We also are blessed - truly - to have a support team for RJC who still take her out and about during these times which gives us a bit of a break. We have friends who invite us for dinner, aware that we could use a break. As a couple, we have become so much better at talking things through and allowing the other person to vent when necessary. We have also become somewhat skilled at tapping in and out (in a manner of speaking) allowing us to take turns with the brunt of her behavior.
This morning, within about an hour, we could see that whatever problem, anxiety, or major issue she was dealing with had somehow been worked out and she was back to being just our RJC. She was happy to zip out for bagels and go to the grocery store (where she happily rearranged shelves). She has happily been playing on her iPad and is looking forward to music at Friendship Circle.
It is a puzzle. How did she work it out? She has nobody to talk her issues through with and reassure her that "this too will pass." Whatever demons, fears, anxieties, stressors she has, she walks alone while working them out. It absolutely breaks my heart that I am not able to help her. I can only hope that I am able to hide my own stress in reaction to hers, well enough so that it does not become added stress for her.
Mostly, I can only hope she feels our love through her pain.
It is so good to wake up today and have our RJC back. Now we can get ourselves back as well.
Recently we had a few days in a row where we could see she was experiencing a great deal of anxiety and agitation. How do we know? It is days of constant and very loud yelling, scripting from Barney, and the constant need to repeat the day's (and future days') schedule. It may not sound like much, but the constancy and loud volume of these behaviors make me want to pull my hair out. Literally. Instead, I have a habit of gritting my teeth and biting the inside of my mouth - neither of which are pleasant.
I am aware from experience that these behaviors could be much worse. In the past, these types of days would have been met with kicked in walls and physical aggression toward me and toward herself. In that sense we have made great progress and I am forever thankful to those who have helped us get to where we are today. Admittedly, I still never know if she will be going through our wall - sometimes we get lucky and she will bang it but not go through it - but mostly that behavior seems to be more under control than it was in the past. Nevertheless, when I see our daughter is obviously struggling with something and we cannot figure out what the issue is or how to help her, it is painful and stressful. That stress makes me cranky and weepy and most definitely whiny and while I would prefer to stay in bed and not deal with it, that is not an option.
What I tend to forget, as I beat myself up for feeling miserable, is that while all families have this experience, most families have a limited time period of this type of behavior. In a healthy situation, children are taught to express their feelings appropriately thus handling their emotions appropriately. Most children will not still NEED to live at home at age 27 because they are unable to take care of themselves (though they may make that choice). Emotionally, our gal is still a toddler in many ways and that is simply how things will be. This does not mean we will ever give up trying to help her find ways to express herself in a more healthy manner. It is simply a fact that she has a developmental delay that is significant and she always will.
Me, on the other hand? I am an adult with coping skills. So while I am cranky, weepy, and whiny, I am also capable of controlling that behavior so the only one who has to deal with it is my husband. When in public I can have a perfectly polite social conversation. I am able to go to work. Thanks to technology, I can avoid spam phone calls or put off chatting for a day or two until I'm in a better mindset. I am able to watch goofy tv that requires no brainpower which is a great way to avoid the world for a bit. I am able to exercise at home and while I've never been a huge fan of the "E" word, I am finding ways to make it work for me and yes, I find it helps.
We also are blessed - truly - to have a support team for RJC who still take her out and about during these times which gives us a bit of a break. We have friends who invite us for dinner, aware that we could use a break. As a couple, we have become so much better at talking things through and allowing the other person to vent when necessary. We have also become somewhat skilled at tapping in and out (in a manner of speaking) allowing us to take turns with the brunt of her behavior.
This morning, within about an hour, we could see that whatever problem, anxiety, or major issue she was dealing with had somehow been worked out and she was back to being just our RJC. She was happy to zip out for bagels and go to the grocery store (where she happily rearranged shelves). She has happily been playing on her iPad and is looking forward to music at Friendship Circle.
It is a puzzle. How did she work it out? She has nobody to talk her issues through with and reassure her that "this too will pass." Whatever demons, fears, anxieties, stressors she has, she walks alone while working them out. It absolutely breaks my heart that I am not able to help her. I can only hope that I am able to hide my own stress in reaction to hers, well enough so that it does not become added stress for her.
Mostly, I can only hope she feels our love through her pain.
It is so good to wake up today and have our RJC back. Now we can get ourselves back as well.
Monday, September 2, 2019
The Rhythm of a Family
Yesterday hubby and I were out and about with RJC and stopped for something to eat. While we were sitting down waiting, we heard a noise. It was somewhat familiar. Not exactly words, not exactly yelling. More of a "Hey, I'm here" sort of noise. It took less than a minute to find the source. A young adult man, probably in his 30s (would be my best guess) with special needs.
First let me explain that I was very aware of the fact that I shouldn't gape. I hate when people stare at my family as every bit of my insecurity comes out then. This family was in front of me, a bit to the side, and there was a fair distance between us. The only person directly facing me was the older man who was in deep conversation with a different younger man. I couldn't help but to occasionally look up and at some point I started to wonder - will that be us in ten or fifteen years? I was not watching because I was disgusted, annoyed, or afraid. I was drawn to them as though somebody was holding up a mirror in front of me and I had the opportunity to possibly see my future. Had they ever looked my way they would have received a smile and nod - and I know they would have seen my gal and understood.
Let me try to share what I saw.
At the head of the table sat the father, probably later 60s, maybe a bit older. His son with special needs was next to him. Next came his mom, generally same age as his dad, and next to her was a young gal - perhaps in the 9,10 range. Across from the young gal was a younger gal - 6,7 range. I assumed they are the older couple's grandchildren. Next to her is the mom of these two gals, who appeared to be the daughter-in-law of the older couple, and next to her was another man, who appeared to be her husband - also a son of the older couple and thus, this young man's brother. He also seemed to be in his 30s and I couldn't figure out which sibling was older.
The dad and the brother were in a very serious conversation. In my imagination I thought that perhaps the younger man was getting some kind of advice from the older man...or vice versa. Either way, their attention was on one another. The man with special needs was making his noises and gesturing with one hand, while the other hand had a tight hold around his mom's neck. She was leaning in toward him - probably not voluntarily but as a result of his hold. He would pull her hard toward him and she continued smiling and having a conversation with the younger woman across the way and the two children.
Mostly my eyes were on the woman. I watched as she never showed an ounce of impatience or even acknowledged that it was possible that she was uncomfortable. Instead, she was smiling, nodding and listening to the younger children share whatever was on their mind and it appeared that there was no distracting her from the younger ones. At one point the young man let go of mom's neck, leaned over and grabbed at the younger girl, hitting her in the head. Her grandma immediately smiled and said something that was reassuring, and the young gal took it in stride. I wondered what her grandma said. Maybe something like "Oh, he must really like you to do that!" or "That's what he does when he's happy!" I also imagine the young gal had seen this behavior before as she was not at all flustered. The older man seemed to instinctively realize that something had happened, stopped his conversation with the brother for a quick moment, leaned over and said something (couldn't tell if he was talking to the young man or the mom) then quickly went back to giving his son his attention. It all happened in literally seconds.
I realized then that they had a rhythm. It is the same rhythm we seem to instinctually fall into when we are in a public setting. It is the rhythm that allows us to go out and about in the community. It is the rhythm that has been developed over many years. It's the rhythm that helps us know our roles and exactly what we each need to do in order to have a better chance at a successful outing.
Much like this mom who I was watching, I am the one sitting next to RJC when we are out and about. I hold conversation with others while holding RJC's hand if it is necessary, sometimes bouncing our hands up and down, responding to her endless, repetitive scripted questions and comments, while simultaneously listening and responding to whomever else is talking. I am aware when she has a knife in her hand (is it a safe butter knife or a sharp steak knife), when she is pouring water (we all prefer not to get drenched) and when her volume is starting to get loud. I notice if children around us seem scared or uncomfortable or simply curious. I notice when adults around us seem angry or uncomfortable or perhaps understanding. I take it all in, but I go on with our meal because, well, this is just US. It's our family, we are who we are, and we cannot break our rhythm or chaos will ensue. This I know.
At some point while I was not paying attention, they had left. I bet that it was his mom who said her goodbyes quicker than she would have liked, who took her son by the arm to be sure he got to the car safely. I bet it was his dad who hugged his other son, his daughter-in-law and grandchildren and maybe walked with them to the car but knew he needed to quickly get back to his wife and son. I wondered if their son still lived with them at home or if he was in a residential setting. I wondered if the mom ever stopped being tired, if the dad ever stopped planning for their future and trying to figure out how to keep their boy safe and happy. I wondered at what point in their lives would they feel relaxed, feel like they could have just time for the two of them - when their bodies, mind and soul were only focused on one another.
Then I thought about how much obvious love and strength there was at that table. The lucky young gals who learned from a young age that people are different but not less important, who should be valued and not feared. How lucky the brother and sister-in-law were to have this young man in their lives to enrich their relationship and give them the opportunity to practice and role model kindness and acceptance. How lucky the parents were to have this life experience and to know full well that some things are not to be explained or understood.
I also thought about the fact that some days those parents, the brother and his family, may have wished things were different - not because they loved their child less but because they were human.
I couldn't stop thinking about this family. For whatever reason they had touched my heart. I thought about this young man and how he was so obviously loved, cared for, and an integral part of this family's specific rhythm.
Then I took a deep breath, looked at my beautiful girl and my amazing husband, and we went home to our own rhythm.
First let me explain that I was very aware of the fact that I shouldn't gape. I hate when people stare at my family as every bit of my insecurity comes out then. This family was in front of me, a bit to the side, and there was a fair distance between us. The only person directly facing me was the older man who was in deep conversation with a different younger man. I couldn't help but to occasionally look up and at some point I started to wonder - will that be us in ten or fifteen years? I was not watching because I was disgusted, annoyed, or afraid. I was drawn to them as though somebody was holding up a mirror in front of me and I had the opportunity to possibly see my future. Had they ever looked my way they would have received a smile and nod - and I know they would have seen my gal and understood.
Let me try to share what I saw.
At the head of the table sat the father, probably later 60s, maybe a bit older. His son with special needs was next to him. Next came his mom, generally same age as his dad, and next to her was a young gal - perhaps in the 9,10 range. Across from the young gal was a younger gal - 6,7 range. I assumed they are the older couple's grandchildren. Next to her is the mom of these two gals, who appeared to be the daughter-in-law of the older couple, and next to her was another man, who appeared to be her husband - also a son of the older couple and thus, this young man's brother. He also seemed to be in his 30s and I couldn't figure out which sibling was older.
The dad and the brother were in a very serious conversation. In my imagination I thought that perhaps the younger man was getting some kind of advice from the older man...or vice versa. Either way, their attention was on one another. The man with special needs was making his noises and gesturing with one hand, while the other hand had a tight hold around his mom's neck. She was leaning in toward him - probably not voluntarily but as a result of his hold. He would pull her hard toward him and she continued smiling and having a conversation with the younger woman across the way and the two children.
Mostly my eyes were on the woman. I watched as she never showed an ounce of impatience or even acknowledged that it was possible that she was uncomfortable. Instead, she was smiling, nodding and listening to the younger children share whatever was on their mind and it appeared that there was no distracting her from the younger ones. At one point the young man let go of mom's neck, leaned over and grabbed at the younger girl, hitting her in the head. Her grandma immediately smiled and said something that was reassuring, and the young gal took it in stride. I wondered what her grandma said. Maybe something like "Oh, he must really like you to do that!" or "That's what he does when he's happy!" I also imagine the young gal had seen this behavior before as she was not at all flustered. The older man seemed to instinctively realize that something had happened, stopped his conversation with the brother for a quick moment, leaned over and said something (couldn't tell if he was talking to the young man or the mom) then quickly went back to giving his son his attention. It all happened in literally seconds.
I realized then that they had a rhythm. It is the same rhythm we seem to instinctually fall into when we are in a public setting. It is the rhythm that allows us to go out and about in the community. It is the rhythm that has been developed over many years. It's the rhythm that helps us know our roles and exactly what we each need to do in order to have a better chance at a successful outing.
Much like this mom who I was watching, I am the one sitting next to RJC when we are out and about. I hold conversation with others while holding RJC's hand if it is necessary, sometimes bouncing our hands up and down, responding to her endless, repetitive scripted questions and comments, while simultaneously listening and responding to whomever else is talking. I am aware when she has a knife in her hand (is it a safe butter knife or a sharp steak knife), when she is pouring water (we all prefer not to get drenched) and when her volume is starting to get loud. I notice if children around us seem scared or uncomfortable or simply curious. I notice when adults around us seem angry or uncomfortable or perhaps understanding. I take it all in, but I go on with our meal because, well, this is just US. It's our family, we are who we are, and we cannot break our rhythm or chaos will ensue. This I know.
At some point while I was not paying attention, they had left. I bet that it was his mom who said her goodbyes quicker than she would have liked, who took her son by the arm to be sure he got to the car safely. I bet it was his dad who hugged his other son, his daughter-in-law and grandchildren and maybe walked with them to the car but knew he needed to quickly get back to his wife and son. I wondered if their son still lived with them at home or if he was in a residential setting. I wondered if the mom ever stopped being tired, if the dad ever stopped planning for their future and trying to figure out how to keep their boy safe and happy. I wondered at what point in their lives would they feel relaxed, feel like they could have just time for the two of them - when their bodies, mind and soul were only focused on one another.
Then I thought about how much obvious love and strength there was at that table. The lucky young gals who learned from a young age that people are different but not less important, who should be valued and not feared. How lucky the brother and sister-in-law were to have this young man in their lives to enrich their relationship and give them the opportunity to practice and role model kindness and acceptance. How lucky the parents were to have this life experience and to know full well that some things are not to be explained or understood.
I also thought about the fact that some days those parents, the brother and his family, may have wished things were different - not because they loved their child less but because they were human.
I couldn't stop thinking about this family. For whatever reason they had touched my heart. I thought about this young man and how he was so obviously loved, cared for, and an integral part of this family's specific rhythm.
Then I took a deep breath, looked at my beautiful girl and my amazing husband, and we went home to our own rhythm.
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