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!
Sunday, February 17, 2019
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.
Friday, December 7, 2018
Language Breakthrough(ish)
Months have gone by since I have posted. It seemed like there was lots going on with our gal for a while. She was not in her best place and it was exhausting. Most grating and frustrating and concerning was the constant yelling we seemed to be getting from her. She often appeared uptight. Like a guitar string about to break. The thought of sitting down to write about it after living it? Nope. Wasn't happening.
Lately, however, there have been some nice positives going on. This seems to happen. We get into cycles of negatives and suddenly it just turns around. We do not know why. You can bet that if we did know, we would be doing whatever needed to be done to get us here. Still, we can appreciate the now. She is more settled, less anxious, and the screaming has lessened considerably. There has also been a bit of a language breakthrough that we have been working on for...well...years. Literally. Years.
That very tricky "why/because" concept.
Here's what usually happens:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because I'm angry.
Here's what happened the other day:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because laundry.
My brain then went: Wait. What? So I zipped off an email to her Day Program and asked if it was possible that something happened having to do with laundry. Honestly...I know. Sometimes the things I say (or write) sound ridiculous, even to me. But I needed to try.
An email came back that yes, the previous morning they were working on teaching the task of doing laundry and she started to scream. It lasted a while and then all was well.
I was never so happy to know that my gal was screaming at her program. Over laundry.
Since then, I've been laser focused on finding different situations for us to work on the "why/because" skill. She has been more successful in avoiding the odd spiral she usually lands in and instead, has looked for ways to give us actual information. Nothing earth shatteringly important but enough for us to know that she is slowly grasping the concept.
For example, she had a bandaid on her arm.
Me: Why do you have a bandaid?
RJC: Because boo boo.
(YES)!
Me: Why are you yawning?
RJC: Because I'm tired. Not sleep yet.
(DOUBLE YES! TWO SENTENCES)!
Whoa. Usually she won't know what to answer so she will say "yes" as though she is agreeing with me. Yes, she has a bandaid or yes, she is tired. Or she will find a way to get into that cycle as described above.
These new responses were appropriate and gave me some information.
What does this mean you may ask? Why is this skill so important? In one word. Safety. It has always been my huge fear and major sadness that something may happen to our girl and she would not be able to communicate what happened. Every time she screams and we can't figure out the catalyst, it is a stab of fear in my heart. We are nowhere near her being able to tell us in clear words what the source of an issue may be. We are nowhere near to her being able to share anything abstract. We are nowhere near any type of consistency as she will still often reply "yes" to my "why" questions. Still, there is indication that she is starting to understand.
This is exciting. This will be slow. We will keep on keepin' on.
NOTE: A few thoughts:
The interesting thing about RJC and her autism is that her language continues to develop. I think back to the professionals who told us that she would stop developing language at age 5. They were wrong.
Also, language is also not something she simply learns from hearing other people. Language concepts need to be directly taught. Yet at age 21, she left school and pooof. No more Speech Therapy (or Occupational Therapy, or Physical Therapy for those who used to have them). Granted, this brings us to an entirely different topic on appropriate services for adults diagnosed with autism and how difficult they are to find, as well as expensive to obtain. Yet it needed to be mentioned.
Lately, however, there have been some nice positives going on. This seems to happen. We get into cycles of negatives and suddenly it just turns around. We do not know why. You can bet that if we did know, we would be doing whatever needed to be done to get us here. Still, we can appreciate the now. She is more settled, less anxious, and the screaming has lessened considerably. There has also been a bit of a language breakthrough that we have been working on for...well...years. Literally. Years.
That very tricky "why/because" concept.
Here's what usually happens:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because I'm angry.
Here's what happened the other day:
Me: Why are you yelling?
RJC: Because I'm angry.
Me: Why are you angry?
RJC: Because I'm mad.
Me: Why are you mad?
RJC: Because laundry.
My brain then went: Wait. What? So I zipped off an email to her Day Program and asked if it was possible that something happened having to do with laundry. Honestly...I know. Sometimes the things I say (or write) sound ridiculous, even to me. But I needed to try.
An email came back that yes, the previous morning they were working on teaching the task of doing laundry and she started to scream. It lasted a while and then all was well.
I was never so happy to know that my gal was screaming at her program. Over laundry.
Since then, I've been laser focused on finding different situations for us to work on the "why/because" skill. She has been more successful in avoiding the odd spiral she usually lands in and instead, has looked for ways to give us actual information. Nothing earth shatteringly important but enough for us to know that she is slowly grasping the concept.
For example, she had a bandaid on her arm.
Me: Why do you have a bandaid?
RJC: Because boo boo.
(YES)!
Me: Why are you yawning?
RJC: Because I'm tired. Not sleep yet.
(DOUBLE YES! TWO SENTENCES)!
Whoa. Usually she won't know what to answer so she will say "yes" as though she is agreeing with me. Yes, she has a bandaid or yes, she is tired. Or she will find a way to get into that cycle as described above.
These new responses were appropriate and gave me some information.
What does this mean you may ask? Why is this skill so important? In one word. Safety. It has always been my huge fear and major sadness that something may happen to our girl and she would not be able to communicate what happened. Every time she screams and we can't figure out the catalyst, it is a stab of fear in my heart. We are nowhere near her being able to tell us in clear words what the source of an issue may be. We are nowhere near to her being able to share anything abstract. We are nowhere near any type of consistency as she will still often reply "yes" to my "why" questions. Still, there is indication that she is starting to understand.
This is exciting. This will be slow. We will keep on keepin' on.
NOTE: A few thoughts:
The interesting thing about RJC and her autism is that her language continues to develop. I think back to the professionals who told us that she would stop developing language at age 5. They were wrong.
Also, language is also not something she simply learns from hearing other people. Language concepts need to be directly taught. Yet at age 21, she left school and pooof. No more Speech Therapy (or Occupational Therapy, or Physical Therapy for those who used to have them). Granted, this brings us to an entirely different topic on appropriate services for adults diagnosed with autism and how difficult they are to find, as well as expensive to obtain. Yet it needed to be mentioned.
Tuesday, August 28, 2018
My Comfortable Spot
This blog has become my Comfortable Spot. I love it here. I talk about some difficult stuff with complete honesty and it is a relief to get things off my chest. Writing also helps me to organize my thoughts while then leads to problem solving. Everyone should have a Comfortable Spot and this is mine.
In the past few months I have come to a somewhat uncomfortable realization about myself. I am no longer a good conversationalist. I used to be decent at the social thing. I could chat about various subjects - world issues, books, movies, sports, work, and various odds and ends that one would label "small talk." When meeting somebody for the first time, I was always interested in hearing about their lives. I loved learning about them and where they live, their families, their work, etc.
Today we went to meet somebody new. Somebody associated with a potential, very far-in-the-future program for RJC. It was an interesting, easy, flowing conversation with a tad bit of humor mixed in. When we left, I not only realized how relaxing it was to have an open, honest conversation but I also realized how often I feel incredibly awkward in a "normal" conversation. These types of conversations (that I used to easily slip into) have become much harder work.
I can easily slip into talking about my daughter and our family and all the craziness that surrounds us. It is literally on my mind all the time AND when I do talk about our family I speak with passion. I can get worked up, I can giggle at some things, and I can become emotional in all sorts of ways. We spend so much time in our household talking about how to do the everyday things that other people just go and do. Need to do the grocery shopping? First we need to talk about which one of us will stay with RJC in the store and which one will do our family shopping. Then we need to strategize - should we feed her first so we have a chance that she will be in a better mood or wait so that we can offer dinner and then a treat as reinforcement for good behavior? We need to remember the new program for safety in the parking lot - let's talk it over so we are on the same page. This is "normal" to me.
So now, when I am hanging out with people who do not work in some related field of special needs or live the life of special needs, I find that I sometimes feel uncomfortable. Instead of the easy banter I used to be able to enjoy, I talk about what is on my mind and about my family - and end up giving out much too much information and spending too much time talking about the day-to-day stuff that probably isn't all that interesting. I mean really. Nobody wants to talk about going to the grocery store.
The thing is, that for me, the grocery store trip was a major hurdle in my day and when we get through it I want to tell somebody!
Luckily, I have this blog. It's My Comfortable Spot. It's where I can say how things really are and not feel bad about doing so because that's the entire purpose for writing. I can write all sorts of things and people can choose to avoid reading all together or stop reading when they are tired of the topic. It won't hurt my feelings because I will never know. It's also a great place to play the honesty card. Again, it's the purpose for writing. I don't sugar coat anything and I'm not particularly careful with my words. It's easy to be here.
Still, I'm thinking that this is an area where I need to improve so here's my strategy: to remember to talk about whatever it is people talk about (you lead, I'll follow), and to remember that everyone has struggles...and we don't need to air them in every conversation.
That being said, I will also cut myself a break and know that My Comfortable Spot is here when needed...and so are my friends.
In the past few months I have come to a somewhat uncomfortable realization about myself. I am no longer a good conversationalist. I used to be decent at the social thing. I could chat about various subjects - world issues, books, movies, sports, work, and various odds and ends that one would label "small talk." When meeting somebody for the first time, I was always interested in hearing about their lives. I loved learning about them and where they live, their families, their work, etc.
Today we went to meet somebody new. Somebody associated with a potential, very far-in-the-future program for RJC. It was an interesting, easy, flowing conversation with a tad bit of humor mixed in. When we left, I not only realized how relaxing it was to have an open, honest conversation but I also realized how often I feel incredibly awkward in a "normal" conversation. These types of conversations (that I used to easily slip into) have become much harder work.
I can easily slip into talking about my daughter and our family and all the craziness that surrounds us. It is literally on my mind all the time AND when I do talk about our family I speak with passion. I can get worked up, I can giggle at some things, and I can become emotional in all sorts of ways. We spend so much time in our household talking about how to do the everyday things that other people just go and do. Need to do the grocery shopping? First we need to talk about which one of us will stay with RJC in the store and which one will do our family shopping. Then we need to strategize - should we feed her first so we have a chance that she will be in a better mood or wait so that we can offer dinner and then a treat as reinforcement for good behavior? We need to remember the new program for safety in the parking lot - let's talk it over so we are on the same page. This is "normal" to me.
So now, when I am hanging out with people who do not work in some related field of special needs or live the life of special needs, I find that I sometimes feel uncomfortable. Instead of the easy banter I used to be able to enjoy, I talk about what is on my mind and about my family - and end up giving out much too much information and spending too much time talking about the day-to-day stuff that probably isn't all that interesting. I mean really. Nobody wants to talk about going to the grocery store.
The thing is, that for me, the grocery store trip was a major hurdle in my day and when we get through it I want to tell somebody!
Luckily, I have this blog. It's My Comfortable Spot. It's where I can say how things really are and not feel bad about doing so because that's the entire purpose for writing. I can write all sorts of things and people can choose to avoid reading all together or stop reading when they are tired of the topic. It won't hurt my feelings because I will never know. It's also a great place to play the honesty card. Again, it's the purpose for writing. I don't sugar coat anything and I'm not particularly careful with my words. It's easy to be here.
Still, I'm thinking that this is an area where I need to improve so here's my strategy: to remember to talk about whatever it is people talk about (you lead, I'll follow), and to remember that everyone has struggles...and we don't need to air them in every conversation.
That being said, I will also cut myself a break and know that My Comfortable Spot is here when needed...and so are my friends.
Wednesday, August 8, 2018
Home Renovations and Autism
We have reached the point where we just cannot stay in the house as it is and need to do some serious updating and renovating. Even me, “Queen of Accepting Mediocrity” has finally thrown in the towel so we are taking the plunge. We’ve gone on like this for a quite a while now, mostly waiting until a good amount of time has gone by that our gal wasn’t still creating huge holes in the wall and/or throwing things. While I am hesitant to say that we are good to go (trust me, if you went through even one of these episodes you’d never say “oh that will never happen again”) we need to have our home back. I need a space that is relaxing and comfortable. Hubby also made a very good point. We aren't always able to visit with people so we need a place where we can actually invite people in and not feel slightly mortified. That was the winning argument.
I do tend to be the real life version of "When You Give a Mouse a Cookie." Once we start doing something it inevitably leads to the need to do something else. This project is growing. On the positive side, our house is not very large. We are also excited to get to the end result so while we aren't looking forward to doing all of this, we are very much looking forward to having it done. That's motivating.
Home improvement is stressful for anyone. Add autism to the mix and there's an added dimension of stress to the process. We have been strategizing to try to figure out how to make this least impactful on our gal. We do not want a stressed out RJC (one stressed out woman in the house is plenty enough for Hubby). Here's a look at what we have been generally trying to consider in making this process bearable.
The first issue was figuring out when to do this. Since we need to be out of the house for a few days while the wood floor is fixed and finished, we decided we'd need to do this while the three of us are on a planned little getaway. That also means that we needed to come up with a plan quickly since that little getaway is coming up quickly!
Fixing the floor means taking everything out of the living room/dining room and apparently not wearing shoes on the floor for at least two weeks after they are done. The challenge is that RJC wears her sneakers until she takes her shower at 7 (not 6:59...7). We could not figure out how we were going to get her to put on slippers as this is so out of the routine. We decided that the best way to do this is to make a new rule starting immediately when she came home from camp. As soon as we come in the house we need to change to slippers. She was not thrilled and there was some loud protesting but we have been consistent about insisting that she change into her slippers. She now will do it with a reminder but usually no more protesting. I imagine that soon it will become part of her routine.
The other part of this is that we need to move all of the furniture out of the living room/dining room. The large pieces will need to wait until the very last minute before we leave, but we need to at least clean out everything. The bookshelves, the knickknacks, the various drawers, etc. RJC has certain items in certain places. She was not in the least bit cooperative when I started to move things around and put them in different rooms. In fact, she was downright loud and unhappy. I attempted to explain that we are getting a new floor...she looked at me like I had two heads. Finally I decided to leave some of her stuff out then slowly move it out, letting her know where it's going and that seems to be working. She has seen everything else moved out and seems to also understand none of the items are being thrown away and she sees them in other rooms. As I am now moving her things she is giving me some side glances but she's not fussing anymore. As of tonight, there are only 5 small items of hers left that I have moved to one empty shelf. Those will be easy to move at the last minute. Everything else is pretty much emptied out, and cleaned off and we mostly just have to move the actual furniture. Again, a last minute chore.
On the list of fixes and renovations to come, the other ones that will directly affect her are new furniture and new carpeting. She has officially killed the couch. It's not just broken it's super broken. I can't explain what she did, but the part of the couch that she sits on is lopsided - the back that she leans on as well as the foot part that kicks out. We are now looking for a couch that she cannot break. HA! Do they even make such a thing? We also need to do this quickly because if we are going to go through the trouble of moving the furniture out to fix the wood floors, we are not putting a broken couch back on the new floor. The new couch needs to be ordered and ready by the time we come back from our little getaway. Tick tock tick tock. The pressure is on. We've looked in some stores, we've called a few places, we've been online. Finding RJC proof furniture that we also like is not easy. The sales people have tried to help us but when we explain what we are looking for they pretty much look perplexed and a bit fearful. Yep. This will be fun.
As for the carpeting, its the same issue. We need to take the furniture out of her room so I do not want to put back her broken dresser. Yes, I realize this does not make us sound good. We have lots of broken furniture. Please don't judge. Just believe me when I tell you it's been complicated. In any case, before we take care of the carpeting we will need to find a new dresser for her room, preferably one that will hold up.
Other than these projects, there are others we will be doing that hopefully they will not impact her world as directly. For now we are walking a tightrope. Some things just need to be done and there is no way to do them without her cooperation, or at least without her tolerance. She has certainly grown emotionally in the last few years so we really think this is the time. It needs to be the time because my own tolerance for the whacky set up we have been living with is gone. I want my home back.
Clicking my heels three times and hoping for the best.
I do tend to be the real life version of "When You Give a Mouse a Cookie." Once we start doing something it inevitably leads to the need to do something else. This project is growing. On the positive side, our house is not very large. We are also excited to get to the end result so while we aren't looking forward to doing all of this, we are very much looking forward to having it done. That's motivating.
Home improvement is stressful for anyone. Add autism to the mix and there's an added dimension of stress to the process. We have been strategizing to try to figure out how to make this least impactful on our gal. We do not want a stressed out RJC (one stressed out woman in the house is plenty enough for Hubby). Here's a look at what we have been generally trying to consider in making this process bearable.
The first issue was figuring out when to do this. Since we need to be out of the house for a few days while the wood floor is fixed and finished, we decided we'd need to do this while the three of us are on a planned little getaway. That also means that we needed to come up with a plan quickly since that little getaway is coming up quickly!
Fixing the floor means taking everything out of the living room/dining room and apparently not wearing shoes on the floor for at least two weeks after they are done. The challenge is that RJC wears her sneakers until she takes her shower at 7 (not 6:59...7). We could not figure out how we were going to get her to put on slippers as this is so out of the routine. We decided that the best way to do this is to make a new rule starting immediately when she came home from camp. As soon as we come in the house we need to change to slippers. She was not thrilled and there was some loud protesting but we have been consistent about insisting that she change into her slippers. She now will do it with a reminder but usually no more protesting. I imagine that soon it will become part of her routine.
The other part of this is that we need to move all of the furniture out of the living room/dining room. The large pieces will need to wait until the very last minute before we leave, but we need to at least clean out everything. The bookshelves, the knickknacks, the various drawers, etc. RJC has certain items in certain places. She was not in the least bit cooperative when I started to move things around and put them in different rooms. In fact, she was downright loud and unhappy. I attempted to explain that we are getting a new floor...she looked at me like I had two heads. Finally I decided to leave some of her stuff out then slowly move it out, letting her know where it's going and that seems to be working. She has seen everything else moved out and seems to also understand none of the items are being thrown away and she sees them in other rooms. As I am now moving her things she is giving me some side glances but she's not fussing anymore. As of tonight, there are only 5 small items of hers left that I have moved to one empty shelf. Those will be easy to move at the last minute. Everything else is pretty much emptied out, and cleaned off and we mostly just have to move the actual furniture. Again, a last minute chore.
On the list of fixes and renovations to come, the other ones that will directly affect her are new furniture and new carpeting. She has officially killed the couch. It's not just broken it's super broken. I can't explain what she did, but the part of the couch that she sits on is lopsided - the back that she leans on as well as the foot part that kicks out. We are now looking for a couch that she cannot break. HA! Do they even make such a thing? We also need to do this quickly because if we are going to go through the trouble of moving the furniture out to fix the wood floors, we are not putting a broken couch back on the new floor. The new couch needs to be ordered and ready by the time we come back from our little getaway. Tick tock tick tock. The pressure is on. We've looked in some stores, we've called a few places, we've been online. Finding RJC proof furniture that we also like is not easy. The sales people have tried to help us but when we explain what we are looking for they pretty much look perplexed and a bit fearful. Yep. This will be fun.
As for the carpeting, its the same issue. We need to take the furniture out of her room so I do not want to put back her broken dresser. Yes, I realize this does not make us sound good. We have lots of broken furniture. Please don't judge. Just believe me when I tell you it's been complicated. In any case, before we take care of the carpeting we will need to find a new dresser for her room, preferably one that will hold up.
Other than these projects, there are others we will be doing that hopefully they will not impact her world as directly. For now we are walking a tightrope. Some things just need to be done and there is no way to do them without her cooperation, or at least without her tolerance. She has certainly grown emotionally in the last few years so we really think this is the time. It needs to be the time because my own tolerance for the whacky set up we have been living with is gone. I want my home back.
Clicking my heels three times and hoping for the best.
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