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.
Sunday, November 10, 2019
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.
Saturday, July 20, 2019
And...Here We Go Again...Camp Time!
Tomorrow begins two weeks of overnight camp for Miss RJC. Every year I think it will be easier to send her off, yet every year that darn anxiety creeps in. On the positive side, she seems mighty relaxed about going. We did not "officially" tell her until today, but Hubby said he was totally sure she already knew. Granted, hard to miss the large suitcase I had started to pack and the piles of clothing in the (usually) empty room. She also did not have one single thing on her calendar in the month of July. As usual, she refused to even say the name of the month and when given any opportunity she tore out the month of July from calendars.
This year we decided to try something different while she is gone. Usually we drop her off and head out for a mini vacation. The problem has been that my anxiety is still sky high for a few days after we drop her off, so relaxing is difficult. I am generally distracted and will mention her and some oddball concern that I have. I admit, I am not the most fun person to be around for a day or two. What to do, what to do...
Our new plan is that we are both continuing to work this week but we each chose a day to plan a date night - something fun and local to do in the evening for both of us. My day is Monday - I made my plan, made the necessary reservations and I'm looking forward to it! Hubby's night is Thursday and he has told me he made the arrangements and we are good to go. I'm super excited to find out what he planned! We also have plans with friends for Tuesday, and Shabbos dinner with my inlaws Friday night. Over the weekend we will be spending an entire day with our NMC. The following week we both took off from work and hope to truly be relaxed by then.
What can I say? Sometimes we just need to understand ourselves and our limitations and go with them. RJC is honestly never off of my mind, even when it's just a "normal" day. I drop her off at her Day Program and I have a checklist in my mind that I go over while I drive to work. Did she have her lunch, did she remember her backpack, did I need to sign any paperwork or make sure I let the staff know anything important, what are our plans for that evening and did I plan for coverage for RJC if necessary etc. During the day I tend to stop and consider these questions again - just to be sure I've covered my bases. I may check in with the Hubby to be sure everything is smooth going. The two weeks that she is not here is simply odd. It feels strange to not know everything she is doing, or what her mood was that morning, or if she had some new bump or bruise that needs attention.
To be completely honest - I love these two weeks. I love that she is with people who care about her and I love that she is having fun with new people in her life. They are very good about creating a program that is unique for her. They make adjustments as necessary. Last year a big sleeping issue came up and they handled it beautifully. In fact, it worked so well that I modified my "Getting to Know RJC" document this year to include that procedure (c'mon, it cannot surprise you that I write up a document every summer)! She always comes home with some new skill. Last summer her expressive language improved tremendously! For my part, I enjoy sleeping in the dark, sleeping until 630 AM (instead of 5 AM), watching tv without needing the subtitles (RJC breaks headphones at an amazing rate, thus we are often listening to Barney while watching our own shows), being able to leave the house whenever we choose and without an actual plan, and simply enjoying our privacy as an old married couple.
It's getting late and since sitting down to write this, I have found myself feeling less anxious. It certainly helps that she is happily on her iPad and there is no self talk going on about when she is coming home or when she will see mommy and daddy or when it's time to go to back to the farm. This tells me that she is comfortable and relaxed about the idea of camp which in turn, helps me to remind myself that these two weeks are for her and about her. Our gal is truly becoming more independent and though she may be 27 years old, she has plenty of room for growth developmentally. As her parents, that is our main job. To give her skills and to love her enough to help her be as independent as she can, even if it's a bit painful and scary for us.
While she grows...so do we.
This year we decided to try something different while she is gone. Usually we drop her off and head out for a mini vacation. The problem has been that my anxiety is still sky high for a few days after we drop her off, so relaxing is difficult. I am generally distracted and will mention her and some oddball concern that I have. I admit, I am not the most fun person to be around for a day or two. What to do, what to do...
Our new plan is that we are both continuing to work this week but we each chose a day to plan a date night - something fun and local to do in the evening for both of us. My day is Monday - I made my plan, made the necessary reservations and I'm looking forward to it! Hubby's night is Thursday and he has told me he made the arrangements and we are good to go. I'm super excited to find out what he planned! We also have plans with friends for Tuesday, and Shabbos dinner with my inlaws Friday night. Over the weekend we will be spending an entire day with our NMC. The following week we both took off from work and hope to truly be relaxed by then.
What can I say? Sometimes we just need to understand ourselves and our limitations and go with them. RJC is honestly never off of my mind, even when it's just a "normal" day. I drop her off at her Day Program and I have a checklist in my mind that I go over while I drive to work. Did she have her lunch, did she remember her backpack, did I need to sign any paperwork or make sure I let the staff know anything important, what are our plans for that evening and did I plan for coverage for RJC if necessary etc. During the day I tend to stop and consider these questions again - just to be sure I've covered my bases. I may check in with the Hubby to be sure everything is smooth going. The two weeks that she is not here is simply odd. It feels strange to not know everything she is doing, or what her mood was that morning, or if she had some new bump or bruise that needs attention.
To be completely honest - I love these two weeks. I love that she is with people who care about her and I love that she is having fun with new people in her life. They are very good about creating a program that is unique for her. They make adjustments as necessary. Last year a big sleeping issue came up and they handled it beautifully. In fact, it worked so well that I modified my "Getting to Know RJC" document this year to include that procedure (c'mon, it cannot surprise you that I write up a document every summer)! She always comes home with some new skill. Last summer her expressive language improved tremendously! For my part, I enjoy sleeping in the dark, sleeping until 630 AM (instead of 5 AM), watching tv without needing the subtitles (RJC breaks headphones at an amazing rate, thus we are often listening to Barney while watching our own shows), being able to leave the house whenever we choose and without an actual plan, and simply enjoying our privacy as an old married couple.
It's getting late and since sitting down to write this, I have found myself feeling less anxious. It certainly helps that she is happily on her iPad and there is no self talk going on about when she is coming home or when she will see mommy and daddy or when it's time to go to back to the farm. This tells me that she is comfortable and relaxed about the idea of camp which in turn, helps me to remind myself that these two weeks are for her and about her. Our gal is truly becoming more independent and though she may be 27 years old, she has plenty of room for growth developmentally. As her parents, that is our main job. To give her skills and to love her enough to help her be as independent as she can, even if it's a bit painful and scary for us.
While she grows...so do we.
Sunday, June 30, 2019
A Day of Balance
I am not good at balance. I don't mean the "stay on my feet" type of balance (though I've been known to have some issues with that as well, from time to time). I mean the life balance issues.
My husband is excellent at compartmentalizing. He is at work, he focuses on work. He is at home, he is focused on us. He's at synagogue, he pays attention to the service. He's with friends, he enjoys their company and is involved in conversation. You get the idea. This way, he keeps his life balanced. Things get attention when he is ready to give them attention. He says it is because he can only do one thing at a time. I think it is a smart way to live.
I am completely the opposite of my husband. Wherever I am, I am thinking about a zillion different things. I will catch myself drifting to a different life area and will pull myself back and focus on what I'm supposed to. Inevitably, something else causes me to drift off into another life area. It is exhausting. I can be at a party with lovely people, enjoying their conversation and find myself thinking about what I'll do when I get home. That thought leads to what phone calls I need to make, what groceries I need to buy, what forms I need to fill out, what bills are due, and inevitably, all the RJC concerns. All of these thoughts are pretty quick - almost like photos flashing - and at the same time I am still paying attention to the conversation. It is like I have all parts of my brain shooting at once but I am aware of it all.
Needless to say, my brain is often tired and I often feel overwhelmed. It's how I felt when she was 3 1/2 years old and I was told that any language she has at age 5 is the only language she will have. I felt frantic to find a way to teach her to communicate. Of course, I now know that thought this was the working theory of that time, in reality, all these years later, she is still learning and gaining vocabulary/communication skills. When I remember this major dawning, I can settle back into a less frantic mode and find some balance.
Honestly, I was not always like this. Pre-autism days, I was pretty even keeled. I could focus on the present. I never had attention issues. What I have found is that as I am getting older, the autism issues become bigger, more immediate. I literally hear the clock ticking and I feel like I need to fix everything for RJC NOW, plan everything NOW. It is a feeling, (a realization?) that I need to know her future is secure.
Today, however, I had a day of balance. It was wonderful.
My hubby was at work so it was just me and RJC. We met a friend for breakfast and it had been many years since we had seen each other. We had a great time, then went to her house, took a short walk with her dog, and sat outside and chatted with her and her folks. It was lovely. I never once gave a thought to anything other than what we were discussing.
We came home and my husband arrived shortly after us. We snuggled in and watched some baseball (as a side note, we root for different teams and he was happier than me with the outcome) while RJC played on her iPad. We chatted about possible plans for the Fourth of July and things we had to do this week.
Next, our younger daughter came over to take RJC to dinner so hubby and I could have some time together. We went to dinner ourselves, then took a wonderful stroll after dinner. We talked about our future - some about RJC but also about our personal dreams and goals and the many things we wanted to do together. It was so much fun to plan for summer outings we could enjoy together. On the way home, we rolled down the windows and blasted the radio (Carly Simon needs to be blasted) and I sang away with no regard for how bad it sounded - I just lived the moment.
We came home and chatted with our daughter about how her time with RJC went, as well how her new job was, what she was up to etc. We then fell seamlessly into our evening routine of a shower and iPad for RJC, who then folded towels for me while I took care of other laundry issues. Hubby had a few things to do and our day finally settled into where we are now. RJC on her iPad, me blogging, and hubby catching up on one of his shows.
Even as I'm writing, I feel relaxed and happy. To be sure, having a few hours of just us as a couple always has a calming effect on me. It is reminder that I am not only an "autism mom." I am a wife and a woman in my own right, with my own identity and life goals.
Today was a day of balance!
My husband is excellent at compartmentalizing. He is at work, he focuses on work. He is at home, he is focused on us. He's at synagogue, he pays attention to the service. He's with friends, he enjoys their company and is involved in conversation. You get the idea. This way, he keeps his life balanced. Things get attention when he is ready to give them attention. He says it is because he can only do one thing at a time. I think it is a smart way to live.
I am completely the opposite of my husband. Wherever I am, I am thinking about a zillion different things. I will catch myself drifting to a different life area and will pull myself back and focus on what I'm supposed to. Inevitably, something else causes me to drift off into another life area. It is exhausting. I can be at a party with lovely people, enjoying their conversation and find myself thinking about what I'll do when I get home. That thought leads to what phone calls I need to make, what groceries I need to buy, what forms I need to fill out, what bills are due, and inevitably, all the RJC concerns. All of these thoughts are pretty quick - almost like photos flashing - and at the same time I am still paying attention to the conversation. It is like I have all parts of my brain shooting at once but I am aware of it all.
Needless to say, my brain is often tired and I often feel overwhelmed. It's how I felt when she was 3 1/2 years old and I was told that any language she has at age 5 is the only language she will have. I felt frantic to find a way to teach her to communicate. Of course, I now know that thought this was the working theory of that time, in reality, all these years later, she is still learning and gaining vocabulary/communication skills. When I remember this major dawning, I can settle back into a less frantic mode and find some balance.
Honestly, I was not always like this. Pre-autism days, I was pretty even keeled. I could focus on the present. I never had attention issues. What I have found is that as I am getting older, the autism issues become bigger, more immediate. I literally hear the clock ticking and I feel like I need to fix everything for RJC NOW, plan everything NOW. It is a feeling, (a realization?) that I need to know her future is secure.
Today, however, I had a day of balance. It was wonderful.
My hubby was at work so it was just me and RJC. We met a friend for breakfast and it had been many years since we had seen each other. We had a great time, then went to her house, took a short walk with her dog, and sat outside and chatted with her and her folks. It was lovely. I never once gave a thought to anything other than what we were discussing.
We came home and my husband arrived shortly after us. We snuggled in and watched some baseball (as a side note, we root for different teams and he was happier than me with the outcome) while RJC played on her iPad. We chatted about possible plans for the Fourth of July and things we had to do this week.
Next, our younger daughter came over to take RJC to dinner so hubby and I could have some time together. We went to dinner ourselves, then took a wonderful stroll after dinner. We talked about our future - some about RJC but also about our personal dreams and goals and the many things we wanted to do together. It was so much fun to plan for summer outings we could enjoy together. On the way home, we rolled down the windows and blasted the radio (Carly Simon needs to be blasted) and I sang away with no regard for how bad it sounded - I just lived the moment.
We came home and chatted with our daughter about how her time with RJC went, as well how her new job was, what she was up to etc. We then fell seamlessly into our evening routine of a shower and iPad for RJC, who then folded towels for me while I took care of other laundry issues. Hubby had a few things to do and our day finally settled into where we are now. RJC on her iPad, me blogging, and hubby catching up on one of his shows.
Even as I'm writing, I feel relaxed and happy. To be sure, having a few hours of just us as a couple always has a calming effect on me. It is reminder that I am not only an "autism mom." I am a wife and a woman in my own right, with my own identity and life goals.
Today was a day of balance!
Sunday, June 16, 2019
A Father's Day Post
It is not easy being a parent.
Let me start out by giving a shout out on this day devoted to dads. To all those dads who are there for their kids and who are actively involved within their family, you are appreciated, you are needed, and you are loved. I look back on the days that our girls were young and remember my husband playing "Pretty, Pretty Princess," endless playground visits, reading to our younger one and falling asleep on her floor, walking endlessly while carrying our older one while she screamed, and driving 26 hours to Walt Disney World with two other young ladies who were coming along to help us out because flying was not an option back then. I remember potty training (ug), going to school meetings (ug), and many many many trips to various doctors and specialists (ug). Through it all, he was the calm and rational one. As an Engineer, he looked at everything through that lens. What makes sense, what were the options and what was worth the risk. I cannot express how thankful I am that we were on this parenting journey together.
At this point, my husband is now a dad to two young women, RJC (27) and NMC (24). He is a full fledged "autism dad." He embraces the role of dad to both girls and over the years he has figured out how to move from one parenting style to another, depending on the child. Some will say that every parent does this. No two children are alike so parents have to parent each child differently. Fair statement.
The difference for an autism dad, however, is that as typical children grow up, it is natural that they grow through specific stages and parents grow with them. The relationship changes from parent-child to more equal footing. At some point, let's say between 18-25 when the brain has completely developed, a parent can usually take on a more supportive role rather than a directive, hands-on role. The child becomes an adult, they start to make their own life decisions, they are able to take on their own financial responsibility and the parents learn to navigate the world as parents of an independent adult. The parent may now choose to retire, they may become grandparents, travel, find a new hobby etc.
My husband will not be that dad to both gals. We are getting there with NMC. His general role with her now is to offer advice when asked with things like taxes or jobs. They have conversations about life that hopefully helps her stay the course and lets her know that while she is making her way in the world she always has dad to help her out.
Parenting RJC is a completely different way of parenting.
Let's compare parenting NMC vs. RJC. today - Father's Day.
NMC's day (age 24): She lives in an apartment in another town. Texts to say she is running late but will meet us at grandma and grandpa's. Shows up to grandma and grandpa's - eats lunch, chats with everyone about general life issues, tells some jokes, says she needs to get home, and she's off and running. We do not know the specifics of the rest of her day as she is completely in control of her own time and schedule.
RJC's day (age 27): She lives with us. Wakes up and comes to the living room in her jammies to play on the iPad. We tell her it's time to eat breakfast and get dressed. We tell her it's time to go grocery shopping and off we go. We come home and she puts away the groceries. We tell her it's time to go to grandma and grandpa's house. She packs her own food since she does not like what we will be having, gets in the back seat of the car and puts on her DVD player. We go to grandma and grandpa's and she wants to eat though the rest of us aren't ready so she sits at the table and eats while the rest of us are chatting. She isn't able to completely take part in the conversation but when she hears a word she knows she may comment (thought the comment is only generally related to our conversation we always stop and comment back). We eat, she plops down on the couch and hangs out. Occasionally she will call out a question to one of us or wants to engage in some scripting and we respond while continuing the conversation that we are already in. We tell her it's time to head out. We come home and she is happily back in her spot with her iPod. A little later we tell her it's time for dinner, time to get a shower, time to put on jammies, time to brush her teeth and hair, time to go to bed. Of course, there will also be various moments of general conversation or scripting. We may also decide to take a ride for ice cream and she will come along - she cannot be left alone. Ever.
During the week, as an autism dad, he is responsible for picking her up from her Day Program, taking her on various errands (he or she may need a haircut, he may have a chiropractic visit so he takes her along, or they may stop at the grocery store, the bank, etc). It may be an evening where he is coaching her Special Olympics team or he may need to help with some paperwork. If I have a meeting, he is on home duty. If he has a meeting or wants to do something socially, he needs to be sure to let me know ahead of time so that I am on home duty. If he wants to plan a date night for us, it needs to be planned ahead so that somebody is home with RJC.
Being an autism dad also means:
Happy Father's Day to my favorite (and yes, only) husband.
Let me start out by giving a shout out on this day devoted to dads. To all those dads who are there for their kids and who are actively involved within their family, you are appreciated, you are needed, and you are loved. I look back on the days that our girls were young and remember my husband playing "Pretty, Pretty Princess," endless playground visits, reading to our younger one and falling asleep on her floor, walking endlessly while carrying our older one while she screamed, and driving 26 hours to Walt Disney World with two other young ladies who were coming along to help us out because flying was not an option back then. I remember potty training (ug), going to school meetings (ug), and many many many trips to various doctors and specialists (ug). Through it all, he was the calm and rational one. As an Engineer, he looked at everything through that lens. What makes sense, what were the options and what was worth the risk. I cannot express how thankful I am that we were on this parenting journey together.
At this point, my husband is now a dad to two young women, RJC (27) and NMC (24). He is a full fledged "autism dad." He embraces the role of dad to both girls and over the years he has figured out how to move from one parenting style to another, depending on the child. Some will say that every parent does this. No two children are alike so parents have to parent each child differently. Fair statement.
The difference for an autism dad, however, is that as typical children grow up, it is natural that they grow through specific stages and parents grow with them. The relationship changes from parent-child to more equal footing. At some point, let's say between 18-25 when the brain has completely developed, a parent can usually take on a more supportive role rather than a directive, hands-on role. The child becomes an adult, they start to make their own life decisions, they are able to take on their own financial responsibility and the parents learn to navigate the world as parents of an independent adult. The parent may now choose to retire, they may become grandparents, travel, find a new hobby etc.
My husband will not be that dad to both gals. We are getting there with NMC. His general role with her now is to offer advice when asked with things like taxes or jobs. They have conversations about life that hopefully helps her stay the course and lets her know that while she is making her way in the world she always has dad to help her out.
Parenting RJC is a completely different way of parenting.
Let's compare parenting NMC vs. RJC. today - Father's Day.
NMC's day (age 24): She lives in an apartment in another town. Texts to say she is running late but will meet us at grandma and grandpa's. Shows up to grandma and grandpa's - eats lunch, chats with everyone about general life issues, tells some jokes, says she needs to get home, and she's off and running. We do not know the specifics of the rest of her day as she is completely in control of her own time and schedule.
RJC's day (age 27): She lives with us. Wakes up and comes to the living room in her jammies to play on the iPad. We tell her it's time to eat breakfast and get dressed. We tell her it's time to go grocery shopping and off we go. We come home and she puts away the groceries. We tell her it's time to go to grandma and grandpa's house. She packs her own food since she does not like what we will be having, gets in the back seat of the car and puts on her DVD player. We go to grandma and grandpa's and she wants to eat though the rest of us aren't ready so she sits at the table and eats while the rest of us are chatting. She isn't able to completely take part in the conversation but when she hears a word she knows she may comment (thought the comment is only generally related to our conversation we always stop and comment back). We eat, she plops down on the couch and hangs out. Occasionally she will call out a question to one of us or wants to engage in some scripting and we respond while continuing the conversation that we are already in. We tell her it's time to head out. We come home and she is happily back in her spot with her iPod. A little later we tell her it's time for dinner, time to get a shower, time to put on jammies, time to brush her teeth and hair, time to go to bed. Of course, there will also be various moments of general conversation or scripting. We may also decide to take a ride for ice cream and she will come along - she cannot be left alone. Ever.
During the week, as an autism dad, he is responsible for picking her up from her Day Program, taking her on various errands (he or she may need a haircut, he may have a chiropractic visit so he takes her along, or they may stop at the grocery store, the bank, etc). It may be an evening where he is coaching her Special Olympics team or he may need to help with some paperwork. If I have a meeting, he is on home duty. If he has a meeting or wants to do something socially, he needs to be sure to let me know ahead of time so that I am on home duty. If he wants to plan a date night for us, it needs to be planned ahead so that somebody is home with RJC.
Being an autism dad also means:
- that when she is having a difficult time he knows what to do that may keep her behavior from escalating. He also knows there may be nothing he can do to keep her behavior from escalating and that it does not mean he is a "bad" parent,
- that he needs to set aside his own needs because it is more important for her to be happy than for him to be happy. For example, he can certainly watch that movie he wants to see, but if he wants to be sure to hear it over the scripting it needs to be watched (and read) with captions,
- that he may not be able to retire early because he is financially responsible for her and having medical and dental insurance that allows us to keep her current doctors is important,
- that when she wants to go to X,Y or Z place, he will need to take her because she does not have friends she can call on the phone and say "hey, let's go!"
- that if he is tired from a long day he can go to sleep - as long as there is another adult in the house who is awake.
Happy Father's Day to my favorite (and yes, only) husband.
Sunday, April 14, 2019
When Something Just Has to Be Done
Today was THE day. I was running out of time.
Something just had to be done.
I was dreading it and had managed to avoid it but here we were.
We are having more work done in the house and the next step is taking out the carpeting in the bedrooms and replacing it with wood floors. As an aside, we are hoping this will be helpful for RJC's allergy issue. In any case, we are slowly getting the rooms ready for the work to be done and I knew her closet needed to be cleaned out. Her closet filled with stuffed animals and assorted clothing. By "filled" I mean that the closet door is difficult to open and there is nothing in there that could easily be found. The floor was piles of stuffed animals and clothing, the clothing that actually was hanging up was a mix of very old and incredibly old, with a few items that she actually still wears. I try to be sensitive to her private space and since the closet is always closed it was easy to ignore. Until today - because time was running out. Tick tock, tick tock...
The problem here is that it is difficult to convey in language she would understand, exactly what we would be doing. I couldn't simply say "Let's clean your closet. You can donate what you don't want and keep what you do want" because that was too many words and "donate" is not a word she understands. I needed a visual and needed to find words she would understand. I decided on a garbage bag and the words "keep" and "throw away."
Me (garbage bag in hand): "RJC, let's look in the closet. Tell me what we can throw out." (I hold up an item). "Keep or throw away?"
She looks at me. Doesn't respond. Then..."NOOOO!" and grabs it from then throws it back in the closet. She looks at me with wild panic in her eyes and I feel like the worse mom on the planet.
I realize that any item I ask about, she will throw back in the closet because in her mind that's where it belongs.
Not much to do but try again. Often, once I say something a few times I can literally see her process and eventually she will catch the gist of what I'm saying. I decide I will try to change the words to "bag" and "closet" because those are both concrete.
I go back in and pull out another item and hold it up. "RJC, bag or closet?" She looks at me. Doesn't respond. Then says "closet" and throws it back in. She stares at me, practically daring me to pick up another item. Still, this is progress. There was no yelling.
Now my plan is to model the behavior I'm looking for along with the words that I know she will understand.
I grab an item that I know she will not want - a really old shirt that no longer fits. "Look. Let's throw this out" and I put it in the garbage bag. Then before she can say anything I grab one of her stuffed animals that I know she still puts on her bed sometimes and I say "This we keep" and I put it on her bed.
She looks at me. Doesn't respond. Doesn't yell. It's disconcerting but I see an opening.
I quickly grab another old piece of clothing and say "Let's throw this out" and I put it in the garbage bag with the other item. Then I grab another favorite stuffed animal and say "Keep" and put it on the bed.
She looks at me. Doesn't respond. Doesn't yell.
I immediately grab another clothing item and say "Throw or keep?" I hold my breath as she is quiet then she takes it from me and puts it in the bag. I quickly grab another clothing item that I think she may want to wear again. "Throw or keep?" She takes it from me and puts it on the bed.
She understands.
We work for a while and slowly I realize that I'm not needed. She has moved me out of the way and is working through the items in her closet without me.
Something just had to be done.
I was dreading it and had managed to avoid it but here we were.
We are having more work done in the house and the next step is taking out the carpeting in the bedrooms and replacing it with wood floors. As an aside, we are hoping this will be helpful for RJC's allergy issue. In any case, we are slowly getting the rooms ready for the work to be done and I knew her closet needed to be cleaned out. Her closet filled with stuffed animals and assorted clothing. By "filled" I mean that the closet door is difficult to open and there is nothing in there that could easily be found. The floor was piles of stuffed animals and clothing, the clothing that actually was hanging up was a mix of very old and incredibly old, with a few items that she actually still wears. I try to be sensitive to her private space and since the closet is always closed it was easy to ignore. Until today - because time was running out. Tick tock, tick tock...
The problem here is that it is difficult to convey in language she would understand, exactly what we would be doing. I couldn't simply say "Let's clean your closet. You can donate what you don't want and keep what you do want" because that was too many words and "donate" is not a word she understands. I needed a visual and needed to find words she would understand. I decided on a garbage bag and the words "keep" and "throw away."
Me (garbage bag in hand): "RJC, let's look in the closet. Tell me what we can throw out." (I hold up an item). "Keep or throw away?"
She looks at me. Doesn't respond. Then..."NOOOO!" and grabs it from then throws it back in the closet. She looks at me with wild panic in her eyes and I feel like the worse mom on the planet.
I realize that any item I ask about, she will throw back in the closet because in her mind that's where it belongs.
Not much to do but try again. Often, once I say something a few times I can literally see her process and eventually she will catch the gist of what I'm saying. I decide I will try to change the words to "bag" and "closet" because those are both concrete.
I go back in and pull out another item and hold it up. "RJC, bag or closet?" She looks at me. Doesn't respond. Then says "closet" and throws it back in. She stares at me, practically daring me to pick up another item. Still, this is progress. There was no yelling.
Now my plan is to model the behavior I'm looking for along with the words that I know she will understand.
I grab an item that I know she will not want - a really old shirt that no longer fits. "Look. Let's throw this out" and I put it in the garbage bag. Then before she can say anything I grab one of her stuffed animals that I know she still puts on her bed sometimes and I say "This we keep" and I put it on her bed.
She looks at me. Doesn't respond. Doesn't yell. It's disconcerting but I see an opening.
I quickly grab another old piece of clothing and say "Let's throw this out" and I put it in the garbage bag with the other item. Then I grab another favorite stuffed animal and say "Keep" and put it on the bed.
She looks at me. Doesn't respond. Doesn't yell.
I immediately grab another clothing item and say "Throw or keep?" I hold my breath as she is quiet then she takes it from me and puts it in the bag. I quickly grab another clothing item that I think she may want to wear again. "Throw or keep?" She takes it from me and puts it on the bed.
She understands.
We work for a while and slowly I realize that I'm not needed. She has moved me out of the way and is working through the items in her closet without me.
She does an amazing job sorting what she wants and what she is willing to toss. To my surprise there are some clothing items she is keeping. She throws away a small drum which is another surprise, but keeps the larger one. She clearly understands what she is doing. In the end, she has filled the garbage bags, takes them out of her room and plops in the dining room.
She returns to her room then I watch to see what she will do. She takes everything off of her bed that she has decided to keep, and begins to put it all back in her closet. Neatly. I quietly leave her to her task.
When she is finished she comes over to me and says, "There. All done. Good job!" I had to laugh and of course I reply, "Yes! Very good job!"
Tonight she was playing on her iPad and suddenly looks up and says, "Thank you for cleaning, mommy." I reply, "You did a great job, RJC. Thank you for cleaning."
Indeed.
Because something just had to be done.
And it was.
Sunday, February 17, 2019
Vacation: RJC Style
A few months ago, an unexpected opportunity for a week's vacation opened up and since it had been a few years since we were away with RJC, we made the leap. We planned a week to get away from the ice and snow and spend some time in a sunny, warm place where we had family. We rented a small condo, a car, made the airplane reservations (have to love those credit card points) and off we went!
Vacationing with our gal is fun, somewhat complicated, but well worth it. A change of scenery, new experiences, family she has missed, and the opportunity to practice and generalize all those life skills we work on at home means that it's a different sort of vacation than when hubby and I go by ourselves. She is the priority. It doesn't mean it's less important or less enjoyable, but it is certainly a different sort of experience. We plan our days around her preferences which also means there are people we would like to see but can't see and places we may have liked to have gone that aren't appropriate for her so we make the choice to skip them. For us, it's definitely not worth the stress on us to stress her out. On the positive side, we all enjoy sports and animals and there were plenty of places that have these activities.
First we had to actually get there and I was concerned about the plane ride. Previous plane rides weren't particularly successful (really loud screaming, airlines not particularly accommodating) and I wasn't sure how the TSA process would go. Happy to say, all in all things went smoothly. The airline was so much more informed this go around (I imagine they have had many experiences in the years we've not been flying with RJC) and we were all allowed to preboard together. TSA also did a nice job and at one point while she was getting a bit stressed and starting to script fairly loudly at having to be separated from her teddy bear, the TSA agent recognized the issue and immediately gave it to her after the teddy bear went through the screening machine, even before she and I had completed the screening process. He did so with a smile and with no prompting from me. I was impressed and grateful and the rest of the process went smoothly. She did not even mind taking off her sneakers or taking her iPad out of her backpack. We did give her a small bit of valium on the ride there, but we decided to skip it on the ride home (well, hubby decided, I went along hesitantly) and she did great. Next time we plan to get TSA preapproved (which was the plan this time, but didn't quite work out for various reasons). As a side note, one of the Flight Attendants has a very young, nonverbal child at home. She immediately spotted RJC so we chatted through most of the flight and departed with hugs, one autism mama to another.
Our condo had a small balcony, overlooking a very cool area of water. RJC loved sitting there and watching the wildlife. She would point out everything, especially the stingrays and a very interesting fish that would literally leap high out of the water and come down with a huge splash. The birds were pretty and quite loud, and one liked to perch just a bit to the left of us so we had an excellent close up view. It was mighty loud too, which she thought was mighty amusing. She was so relaxed and happy sitting there. It was great to be able to read or chat with my hubby while she was amused by all of the action happening on the water. There was also a small (maybe 6-8 tables), poolside restaurant where she would have a bagel each morning and I would get my coffee. There were usually one or two employees as well as the owner there, and they would chat with us. A few were from our area of the country and they escaped to the warmth! They became quite big fans of RJC. All were comfortable with her and she would shake the hand of whoever was working that morning, and order for herself. She'd bring her precious quarters in her tummy pack with her and put a few in the tip jar (with literally no understanding of what a "tip" is, but she did know it made people smile). It was nice to have a no pressure start to our day!
There were a few highlights of the week. For sure, seeing our cousins who used to live near us was a big hit with her (actually for all of us). When she asks to see them we remind her that they are an airplane ride away now, so she was quite happy when she saw them again. When we visited their homes, she found a spot she where she was comfortable and happily hung out just listening and popping into conversation here and there when she recognized a topic. We were also able to go to the zoo, attend an NHL hockey game, and play a friendly yet competitive game of mini golf and air hockey with them at various times during the week, so we all had quality time together. Oh! This was also when RJC beat dad in an arcade basketball game - by a lot! So. Much. Fun.
Hubby's cousins also made a bit of a trip to see us and they, too, were very accommodating in making sure it was a success! We met on an outside patio hotel to chat and catch up, then headed out for dinner to a family friendly spot that RJC and the little cousins could enjoy as well. This was my first time meeting some of them and even hubby hadn't met some yet, so getting to know this side of the family was very special. It is so interesting that RJC doesn't have an understanding of "family" per se, yet she does seem to have an understanding that there are people who mean something to us, and therefore they mean something to her. She was content to hang out and now there are more people in her world. Does not get better than that!
Other activities during the week included going to an Animal Sanctuary which had some interesting animals that were rescued. Some were quite exotic! Once again, one of her favorite things was to find a comfy spot and watch the various ducks and fish around a lake. We also went to the Florida Aquarium (their 4D theater showed two movies, SCORE) and they had a Dolphin Sightseeing trip which we took. Though we were told there was an 80% chance of spotting dolphins we did not see any. Not a one. Hubby said we should have warned fellow passengers that I was on the boat and that they shouldn't get their hopes up (we have an ongoing joke about the cloud that follows me) but it was a beautiful ride, even minus the dolphins, so I felt no need to apologize :) RJC was very content to sit and watch the waves and her smile told us all we needed to know.
Hubby and I are already talking about heading that way again next year. It is so nice to be out of the wintery mix of weather we have around here, even if only for a week. A huge bonus to hang out with family. Besides which, there is preseason baseball to be had so that may be the newest experience we will attempt! It is definitely easiest to find a spot and stay in the general area when we travel with our gal so perhaps we can figure out a way to see more family and friends. That tends to be my personal priority, however, whatever we do next year, it will certainly be with RJC's needs as our priority because that's the way we roll around here.
So there you have it. Vacation: RJC Style! One successful week in the books!
Vacationing with our gal is fun, somewhat complicated, but well worth it. A change of scenery, new experiences, family she has missed, and the opportunity to practice and generalize all those life skills we work on at home means that it's a different sort of vacation than when hubby and I go by ourselves. She is the priority. It doesn't mean it's less important or less enjoyable, but it is certainly a different sort of experience. We plan our days around her preferences which also means there are people we would like to see but can't see and places we may have liked to have gone that aren't appropriate for her so we make the choice to skip them. For us, it's definitely not worth the stress on us to stress her out. On the positive side, we all enjoy sports and animals and there were plenty of places that have these activities.
First we had to actually get there and I was concerned about the plane ride. Previous plane rides weren't particularly successful (really loud screaming, airlines not particularly accommodating) and I wasn't sure how the TSA process would go. Happy to say, all in all things went smoothly. The airline was so much more informed this go around (I imagine they have had many experiences in the years we've not been flying with RJC) and we were all allowed to preboard together. TSA also did a nice job and at one point while she was getting a bit stressed and starting to script fairly loudly at having to be separated from her teddy bear, the TSA agent recognized the issue and immediately gave it to her after the teddy bear went through the screening machine, even before she and I had completed the screening process. He did so with a smile and with no prompting from me. I was impressed and grateful and the rest of the process went smoothly. She did not even mind taking off her sneakers or taking her iPad out of her backpack. We did give her a small bit of valium on the ride there, but we decided to skip it on the ride home (well, hubby decided, I went along hesitantly) and she did great. Next time we plan to get TSA preapproved (which was the plan this time, but didn't quite work out for various reasons). As a side note, one of the Flight Attendants has a very young, nonverbal child at home. She immediately spotted RJC so we chatted through most of the flight and departed with hugs, one autism mama to another.
Our condo had a small balcony, overlooking a very cool area of water. RJC loved sitting there and watching the wildlife. She would point out everything, especially the stingrays and a very interesting fish that would literally leap high out of the water and come down with a huge splash. The birds were pretty and quite loud, and one liked to perch just a bit to the left of us so we had an excellent close up view. It was mighty loud too, which she thought was mighty amusing. She was so relaxed and happy sitting there. It was great to be able to read or chat with my hubby while she was amused by all of the action happening on the water. There was also a small (maybe 6-8 tables), poolside restaurant where she would have a bagel each morning and I would get my coffee. There were usually one or two employees as well as the owner there, and they would chat with us. A few were from our area of the country and they escaped to the warmth! They became quite big fans of RJC. All were comfortable with her and she would shake the hand of whoever was working that morning, and order for herself. She'd bring her precious quarters in her tummy pack with her and put a few in the tip jar (with literally no understanding of what a "tip" is, but she did know it made people smile). It was nice to have a no pressure start to our day!
There were a few highlights of the week. For sure, seeing our cousins who used to live near us was a big hit with her (actually for all of us). When she asks to see them we remind her that they are an airplane ride away now, so she was quite happy when she saw them again. When we visited their homes, she found a spot she where she was comfortable and happily hung out just listening and popping into conversation here and there when she recognized a topic. We were also able to go to the zoo, attend an NHL hockey game, and play a friendly yet competitive game of mini golf and air hockey with them at various times during the week, so we all had quality time together. Oh! This was also when RJC beat dad in an arcade basketball game - by a lot! So. Much. Fun.
Hubby's cousins also made a bit of a trip to see us and they, too, were very accommodating in making sure it was a success! We met on an outside patio hotel to chat and catch up, then headed out for dinner to a family friendly spot that RJC and the little cousins could enjoy as well. This was my first time meeting some of them and even hubby hadn't met some yet, so getting to know this side of the family was very special. It is so interesting that RJC doesn't have an understanding of "family" per se, yet she does seem to have an understanding that there are people who mean something to us, and therefore they mean something to her. She was content to hang out and now there are more people in her world. Does not get better than that!
Other activities during the week included going to an Animal Sanctuary which had some interesting animals that were rescued. Some were quite exotic! Once again, one of her favorite things was to find a comfy spot and watch the various ducks and fish around a lake. We also went to the Florida Aquarium (their 4D theater showed two movies, SCORE) and they had a Dolphin Sightseeing trip which we took. Though we were told there was an 80% chance of spotting dolphins we did not see any. Not a one. Hubby said we should have warned fellow passengers that I was on the boat and that they shouldn't get their hopes up (we have an ongoing joke about the cloud that follows me) but it was a beautiful ride, even minus the dolphins, so I felt no need to apologize :) RJC was very content to sit and watch the waves and her smile told us all we needed to know.
Hubby and I are already talking about heading that way again next year. It is so nice to be out of the wintery mix of weather we have around here, even if only for a week. A huge bonus to hang out with family. Besides which, there is preseason baseball to be had so that may be the newest experience we will attempt! It is definitely easiest to find a spot and stay in the general area when we travel with our gal so perhaps we can figure out a way to see more family and friends. That tends to be my personal priority, however, whatever we do next year, it will certainly be with RJC's needs as our priority because that's the way we roll around here.
So there you have it. Vacation: RJC Style! One successful week in the books!
Saturday, January 26, 2019
The Capacity to Learn
In the mornings before work, I often try to take care of some of the standard household chores. Sometimes unloading the dishwasher, sometimes laundry, sometimes a general sweep of the kitchen. I'm tired when I come home from work so having some small sense of order at the start of the day makes me feel accomplished. It is a wonderful feeling.
This week I was feeling particularly anxious about getting things done and there were two loads of laundry that needed to be folded and put away. RJC always takes care of the towels which is a big help. I happened to notice that a good deal of the laundry was clothing of hers. When she was still in school they had worked on folding laundry and at various times I had her help. Over time, though, I had simply started to fold and put away her clothing along with ours. Since I was in a bit of a hurry and really wanted to get it all done I called her over, handed her clothes and said "Here you go. Can you fold and put away?" She took the clothing without hesitation, went to her room and folded and put away all of her clothes. I was honestly completed shocked. First I figured she'd say (or yell) "No!" Once she took them from me, I assumed she'd just cram them into her drawer. Instead, she was compliant and content to help and folded everything with more care than I would have!
It started me thinking over the course of that day, that a big error I was making as her mom is that instead of thinking about her capacity to learn, I sometimes inadvertently create in her a sense of incapability. The result is that RJC is deprived of being a helpful family member and an independent young woman who feels the thrill of successfully accomplishing a task. It also potentially creates a young woman who comes across as entitled and assumes that others will be at her beck and call and will take care of her every need.
This is not at all the type of person I believe my gal actually is - and if she does behave this way at times it is because I have not allowed her to grow to her potential. That's on me. Not on her.
Believe me, this is not at all my intention when I do tasks that she is capable of doing for herself. Usually my thought process is:
Part of the struggle of having an adult child who needs constant supervision and still loves all things preschoolers love, is that it is easy to continue to actually view her as a child/toddler. It is so very easy to forget that she is also an adult who has indeed gained skills over the years and can continue to gain skills. It is also:
So on this morning when I was simply desperate for whatever small amount of help she may be able to give, I was completely floored by her willingness to help as well as her ability to complete the task. Yes, then in typical mom fashion I ran to grab my phone and record the moment. I also felt horribly guilty that I had not continued to reinforce this behavior and that I had assumed what she could not do, rather than what she was able to do.
The very thing that makes me crazy is when I see others underestimate her abilities. Yet I was doing it as well.
This was a lesson for me in dignity as well as in the importance of independence. She was so pleased with herself when she was finished that she came in to the bedroom where I was folding the rest of the clothing and said "All done. Good job RJC." Heck yah! It was a good job and she recognized it as such.
We have a Board Certified Behavior Analyst who is always encouraging us to try to teach new tasks to our gal. This month we have a goal to start to teach her to put food safely into the oven and take it safely out of the oven. We thought it would be appropriate since she loves to bake cookies and she has pretty much mastered the actual process of mixing the dough and dropping the cookies on the tray independently so this would be the last step in her being able to bake cookies independently. I admit, I balked. If you know me, you know I am a professional worrier and the thought that she could burn herself...I was not completely on board though I agreed we should try. You know what? I think she can do this. We will carefully think out the process and write the steps out for her. We will model the behavior, we will supervise very closely, we will prompt, and we will encourage and I believe that she will indeed be able to master this new task.
She will be proudly independent, she will be confident, and she will be successful. Exactly what we want for our RJC.
Actually it is exactly what we want for our both of our daughters. It is what they deserve and what we, as their parents, should feel obligated to give to them. Both of them.
This week I was feeling particularly anxious about getting things done and there were two loads of laundry that needed to be folded and put away. RJC always takes care of the towels which is a big help. I happened to notice that a good deal of the laundry was clothing of hers. When she was still in school they had worked on folding laundry and at various times I had her help. Over time, though, I had simply started to fold and put away her clothing along with ours. Since I was in a bit of a hurry and really wanted to get it all done I called her over, handed her clothes and said "Here you go. Can you fold and put away?" She took the clothing without hesitation, went to her room and folded and put away all of her clothes. I was honestly completed shocked. First I figured she'd say (or yell) "No!" Once she took them from me, I assumed she'd just cram them into her drawer. Instead, she was compliant and content to help and folded everything with more care than I would have!
It started me thinking over the course of that day, that a big error I was making as her mom is that instead of thinking about her capacity to learn, I sometimes inadvertently create in her a sense of incapability. The result is that RJC is deprived of being a helpful family member and an independent young woman who feels the thrill of successfully accomplishing a task. It also potentially creates a young woman who comes across as entitled and assumes that others will be at her beck and call and will take care of her every need.
This is not at all the type of person I believe my gal actually is - and if she does behave this way at times it is because I have not allowed her to grow to her potential. That's on me. Not on her.
Believe me, this is not at all my intention when I do tasks that she is capable of doing for herself. Usually my thought process is:
- I'm in a rush, let me just get this done myself.
- She's tired/grumpy/busy with her iPad so I'll just take care of this.
- I know she can only fold the shirts so I may as well do them while I do the rest of the clothing (note: turns out she can do all of the clothing)
- I don't have the patience to be sure she does it right/make sure she puts everything in the right place/argue with her to get it done.
Part of the struggle of having an adult child who needs constant supervision and still loves all things preschoolers love, is that it is easy to continue to actually view her as a child/toddler. It is so very easy to forget that she is also an adult who has indeed gained skills over the years and can continue to gain skills. It is also:
- Easier to avoid conflict, especially if it's a task that will take some insistence on in order for it to get done (experience a full blown tantrum that includes huge holes in the wall and it can be easy to convince one's self of the justification for this one).
- Hard to find the time to teach skills.
- Difficult to know how to teach skills.
- Hard to restrain one's self from "saving" the her when she is having difficulty.
So on this morning when I was simply desperate for whatever small amount of help she may be able to give, I was completely floored by her willingness to help as well as her ability to complete the task. Yes, then in typical mom fashion I ran to grab my phone and record the moment. I also felt horribly guilty that I had not continued to reinforce this behavior and that I had assumed what she could not do, rather than what she was able to do.
The very thing that makes me crazy is when I see others underestimate her abilities. Yet I was doing it as well.
This was a lesson for me in dignity as well as in the importance of independence. She was so pleased with herself when she was finished that she came in to the bedroom where I was folding the rest of the clothing and said "All done. Good job RJC." Heck yah! It was a good job and she recognized it as such.
We have a Board Certified Behavior Analyst who is always encouraging us to try to teach new tasks to our gal. This month we have a goal to start to teach her to put food safely into the oven and take it safely out of the oven. We thought it would be appropriate since she loves to bake cookies and she has pretty much mastered the actual process of mixing the dough and dropping the cookies on the tray independently so this would be the last step in her being able to bake cookies independently. I admit, I balked. If you know me, you know I am a professional worrier and the thought that she could burn herself...I was not completely on board though I agreed we should try. You know what? I think she can do this. We will carefully think out the process and write the steps out for her. We will model the behavior, we will supervise very closely, we will prompt, and we will encourage and I believe that she will indeed be able to master this new task.
She will be proudly independent, she will be confident, and she will be successful. Exactly what we want for our RJC.
Actually it is exactly what we want for our both of our daughters. It is what they deserve and what we, as their parents, should feel obligated to give to them. Both of them.
Thursday, January 17, 2019
The Concept of "Nevers" vs. The Concept of "Always"
Yesterday, I was on a phone call with an employee from Social Security. She was asking me a bunch of questions because it was time to reevaluate RJC to see if she is still eligible to receive SSI. I know. I find it crazy too but such is the system. She asked questions like:
"Is she employed?" (no)
"Does she still live at home?" (yes)
"Has she been married within the last two years?"
Now you'd think I would simply say "no" to that last question but my snarkiness came out and I replied, "She still watches Barney the Dinosaur and he is her true love."
There was silence, then she said so very kindly "I am sorry. I know these questions can be very hard."
Well yah.
For whatever reason, this is one of those areas that sets off my HUGE sadness about my gal and her autism. Maybe it is because there is nothing that has ever made me happier than being married and having my girls. The idea that RJC has that same door closed to her breaks my heart. Yes, I understand that if she were a neurotypical child, it would not mean she would necessarily get married and have children - maybe she wouldn't want either of those things for a zillion different reasons - but she would have the capacity to make her own choice.
This is one of those life things that she cannot choose. It is just an "is."
Most days I do not dwell on the idea that RJC is diagnosed with autism. Mostly I think of her as her. I know her autism affects every part of her being, but I think of those things as RJC traits. Just part of her personality and everything else that makes up who she is.
Then something small happens - in this case a perfectly appropriate question - and I am lost in the reality of autism as an entity. What it means to her, what it means to our family, what it means to our extended family, what it means to our friends, what it means to the stranger who is seated next to us, what it means for her future...and so forth and so on.
When it comes to RJC, I am often asked about the practical issues of having a gal diagnosed with autism; the worry about where she'll live when I'm gone, the complications of figuring out if she's sick or what happened during the day when we were not around, the difficulty in keeping her safe, the craziness of trying to take her on vacation or to the dentist. I can answer these questions pretty easily and factually.
These other issues though. They are emotionally painful.
The Concept of "Nevers."
For example:
She will never go to a concert or movie with friends.
She will never have a driver's license.
She will never travel on her own
She will never go to college.
She will never have a date.
She will never buy a house or rent an apartment.
She will never hold a full-time job independently.
She will never be able to share her inner most thoughts.
She will never get married.
She will never have children.
She will never have grandchildren.
Please, if you are thinking any of the following things, do not say them to me:
"G-d doesn't give you more than you can handle" OR "Everything has a reason."
"She won't realize what she's missing."
"Lots of people don't have these experiences."
"My typical child won't (fill in the blank) either."
For me, these are not helpful to hear. Instead, just wait me out because shortly everything will feel different. How? Why? Here it is...
When one of these "Nevers" comes up, it sends me into a tailspin for a day or so. I feel sad, I feel resentful. Not at RJC but at Autism. Then I feel angry and guilty that I feel this way because Autism is a part of RJC. Then I manage to move on.
Because inevitably The Concept of "Always" appears.
She will always seek out mom, dad, or NMC (not necessarily always in that order).
She will always be happy when her iPad is working.
She will always enjoy planning outings to her favorite places.
She will always love her calendar.
But here are the big winners:
She will always see people exactly as they are and accept them exactly as they are (unless they are mean in which case she will be smart enough to stay away).
She will always be authentic.
She will always forgive.
So there you have it. The Concept of "Never" vs. the Concept of "Always." In my day-to-day life I need to focus on the concept of "always." Yet the reality of life is that every once in a while the concept of "Never" is going to creep in and it's not going to be pretty.
In a relatively short time though, RJC will do something or say something that brings everything back around to her loving, authentic way. Everything and everyone, including me. She may hop into bed with me in the morning and hold my hand. She may ask to call NMC to be sure she is really coming over to take her someplace. She may sing along to Barney (in English, Hebrew, or Spanish), she may quiz us on dates that we are supposed to take her someplace, or she may want to "help" in the kitchen and then prompt us to tell her she did a great job.
All of those things are so much of who RJC is that they make me smile. Sometimes they make me laugh. Sometimes they make me feel the need to share who she is with the world because truly, most people are not like RJC. Yet if they were, I have no doubt the world would be a better place.
The Concept of "Always"...always wins.
"Is she employed?" (no)
"Does she still live at home?" (yes)
"Has she been married within the last two years?"
Now you'd think I would simply say "no" to that last question but my snarkiness came out and I replied, "She still watches Barney the Dinosaur and he is her true love."
There was silence, then she said so very kindly "I am sorry. I know these questions can be very hard."
Well yah.
For whatever reason, this is one of those areas that sets off my HUGE sadness about my gal and her autism. Maybe it is because there is nothing that has ever made me happier than being married and having my girls. The idea that RJC has that same door closed to her breaks my heart. Yes, I understand that if she were a neurotypical child, it would not mean she would necessarily get married and have children - maybe she wouldn't want either of those things for a zillion different reasons - but she would have the capacity to make her own choice.
This is one of those life things that she cannot choose. It is just an "is."
Most days I do not dwell on the idea that RJC is diagnosed with autism. Mostly I think of her as her. I know her autism affects every part of her being, but I think of those things as RJC traits. Just part of her personality and everything else that makes up who she is.
Then something small happens - in this case a perfectly appropriate question - and I am lost in the reality of autism as an entity. What it means to her, what it means to our family, what it means to our extended family, what it means to our friends, what it means to the stranger who is seated next to us, what it means for her future...and so forth and so on.
When it comes to RJC, I am often asked about the practical issues of having a gal diagnosed with autism; the worry about where she'll live when I'm gone, the complications of figuring out if she's sick or what happened during the day when we were not around, the difficulty in keeping her safe, the craziness of trying to take her on vacation or to the dentist. I can answer these questions pretty easily and factually.
These other issues though. They are emotionally painful.
The Concept of "Nevers."
For example:
She will never go to a concert or movie with friends.
She will never have a driver's license.
She will never travel on her own
She will never go to college.
She will never have a date.
She will never buy a house or rent an apartment.
She will never hold a full-time job independently.
She will never be able to share her inner most thoughts.
She will never get married.
She will never have children.
She will never have grandchildren.
Please, if you are thinking any of the following things, do not say them to me:
"G-d doesn't give you more than you can handle" OR "Everything has a reason."
"She won't realize what she's missing."
"Lots of people don't have these experiences."
"My typical child won't (fill in the blank) either."
For me, these are not helpful to hear. Instead, just wait me out because shortly everything will feel different. How? Why? Here it is...
When one of these "Nevers" comes up, it sends me into a tailspin for a day or so. I feel sad, I feel resentful. Not at RJC but at Autism. Then I feel angry and guilty that I feel this way because Autism is a part of RJC. Then I manage to move on.
Because inevitably The Concept of "Always" appears.
She will always seek out mom, dad, or NMC (not necessarily always in that order).
She will always be happy when her iPad is working.
She will always enjoy planning outings to her favorite places.
She will always love her calendar.
But here are the big winners:
She will always see people exactly as they are and accept them exactly as they are (unless they are mean in which case she will be smart enough to stay away).
She will always be authentic.
She will always forgive.
So there you have it. The Concept of "Never" vs. the Concept of "Always." In my day-to-day life I need to focus on the concept of "always." Yet the reality of life is that every once in a while the concept of "Never" is going to creep in and it's not going to be pretty.
In a relatively short time though, RJC will do something or say something that brings everything back around to her loving, authentic way. Everything and everyone, including me. She may hop into bed with me in the morning and hold my hand. She may ask to call NMC to be sure she is really coming over to take her someplace. She may sing along to Barney (in English, Hebrew, or Spanish), she may quiz us on dates that we are supposed to take her someplace, or she may want to "help" in the kitchen and then prompt us to tell her she did a great job.
All of those things are so much of who RJC is that they make me smile. Sometimes they make me laugh. Sometimes they make me feel the need to share who she is with the world because truly, most people are not like RJC. Yet if they were, I have no doubt the world would be a better place.
The Concept of "Always"...always wins.
Tuesday, January 1, 2019
No Riding the Alligator
Hubby and I are planning a trip to Florida and RJC will be coming along as well. Our very patient, loving and generous cousins have offered to have all of us stay with them.
There's just one teeny tiny issue:
There is an alligator that pretty much lives outside their place.
An alligator.
Now over the years we have told RJC some important rules. The rule: "No riding the dog" was especially important when she was smaller and larger dogs were looking mighty fun to hop on. We needed to say it as a reminder if we were going to somebody's house or we were out and about in the community and we spotted a large dog. "No riding the dog" was a part of our repertoire. Still, we had never considered that we would need to tell her "No riding the alligator."
The big problem is that we are not absolutely sure that she would care what we tell her once she sees the thing. She really, really likes alligators. In fact, any big sort of creature is right up her alley. Like alligators. So sadly, we are not staying with these most beloved cousins but instead we have rented a condo.
I kid you not.
RJC has always had very good motor skills and no comprehension of danger. When she was young, she also did not have the receptive language skills to understand rules. This is a dangerous combination. We used a toddler harness for a ridiculously long time. As she has grown in size, I thank goodness she has also gained language skills so we can remind her about the safety rules. While her increased language skills have given us some peace of mind, when something is really enticing to her...like an alligator...we cannot count on her to remember or care about the rule.
So if you happen to meet up with us while we are on vacation and you happen to hear one of us say to RJC, "Remember. No riding the alligator." We aren't kidding.
There's just one teeny tiny issue:
There is an alligator that pretty much lives outside their place.
An alligator.
Now over the years we have told RJC some important rules. The rule: "No riding the dog" was especially important when she was smaller and larger dogs were looking mighty fun to hop on. We needed to say it as a reminder if we were going to somebody's house or we were out and about in the community and we spotted a large dog. "No riding the dog" was a part of our repertoire. Still, we had never considered that we would need to tell her "No riding the alligator."
The big problem is that we are not absolutely sure that she would care what we tell her once she sees the thing. She really, really likes alligators. In fact, any big sort of creature is right up her alley. Like alligators. So sadly, we are not staying with these most beloved cousins but instead we have rented a condo.
I kid you not.
RJC has always had very good motor skills and no comprehension of danger. When she was young, she also did not have the receptive language skills to understand rules. This is a dangerous combination. We used a toddler harness for a ridiculously long time. As she has grown in size, I thank goodness she has also gained language skills so we can remind her about the safety rules. While her increased language skills have given us some peace of mind, when something is really enticing to her...like an alligator...we cannot count on her to remember or care about the rule.
So if you happen to meet up with us while we are on vacation and you happen to hear one of us say to RJC, "Remember. No riding the alligator." We aren't kidding.
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