Even two years ago, I would never have considered taking RJC to the mall less than two weeks before Christmas. It is one of her favorite ways to spend time, but the crowd, the noise, the lines...no way would I chance it. This year I decided to give it a whirl so we went to her favorite mall. She had the names of the places she wanted to go in proper order, and she knew exactly what she wanted at each place.
First stop - department store. We walked around forever and a day looking for the section that had pajamas. Finally I said, "Let's ask that lady." RJC walked right over to her and said, "Pajamas for winter with sleeves please." The lady hesitated, glanced at me, but I decided to give her a second before intervening. The light bulb went off and the lady smiled and said, "OH! Winter pajamas are over there" and pointed. "Thank you!" my gal replied, and off we went. Not only did we find the winter pajamas, but we found ones that she wanted and that fit. Store 1 - success!
Second stop - Disney Store. This store used to have the visitor's guides that come out of every year but they no longer sell them in the stores. Nevertheless, RJC insists on stopping there and looking for it. Sometimes it works out ok when it's not there. Other times...well...she gets a little loud. The store was packed but she negotiated her way around nicely. No book. She stopped, sighed, and said, "Time for nails." And off we went. No screaming. Store 2 - success!
Third stop - Nail salon. The ladies at this salon know our family well and are always accommodating. We have gotten past the language barrier on both sides and they all truly enjoy RJC who always has very clear instructions on how she wants her nails. I sat next to her and watched as she and the woman negotiated. "Red, green, red, green, red. And white snowflake." The woman wasn't sure which to start with - red or green - so she takes the two colors and holds them up. "Red first? Green first?" RJC chooses the red and they are off and running without any intervention from me. She finishes the nails and RJC reminds her about the snowflake. "Which finger?" RJC is a little perplexed and says, "Snowflake on red." She has six red nails so I intervene. "Snowflake on thumb? Big finger? Pinky?" "Snowflake on thumbs!" she says with relish. They both smile and once again, they are off and running. RJC is thrilled with the result but the woman is not yet through. She holds up some silver glittery polish and says, "Yes? On the snowflake?" RJC nods and the woman puts the finishing touch on. They are both smiling and before we leave the woman tells me "She cute." I must agree. Store 3 - success!
Fourth stop - Mrs. Fields Cookies. There is a young guy behind the counter who has helped RJC in the past. My girl is very picky about her cookies and though there is a full tray of chocolate chip cookie cups with M&Ms, they are not all equal in her eyes. She knows exactly which one she wants. It is difficult to point to a specific one in the case so the guy begins pointing to each one. He points and she replies, "no". so he points again. Again, "no." This goes on until he finally gets to just the right cookie cup and he is met with a resounding "YES!" He smiles and as he rings us up he tells me, "It's so great that she totally knows her mind." I think to myself that it's so great that he thinks this is a great trait because she just held up his line and he didn't care a bit. Store 4 - success!
Last stop - Au Bon Pain for lunch. Now this is going to be tricky because this place is packed and she orders unusual combinations of foods. There is a long line but I notice people who have helped us on past visits so I'm hoping for one of them. We do get a young woman who has helped her before and completely understands what it means when she says, "Chicken Caesar salad with nooo lettuce." She doesn't even blink. Now I also need to bring home a cup of soup but they are refilling the soup that we need. Leaving RJC at the table to come back for the soup isn't an option, but the thought of negotiating the crowd with her once again isn't on my fun list. I ask the cashier if I can pay ahead and then if she would let me know when the soup is refilled. I figured we'd head there on our way out. About ten minutes later, the cashier catches my eye, tells me the soup is ready then offers to get it for me. She gets the soup, a roll, puts a cover on it and puts in a bag. She is my angel. I ask her name. "Christian." "Oh my gosh, quite the perfect name for this time of year" I say. She tells me she was born on Christmas. Too perfect. And at our final stop - success!
As I am driving home, I think of how years of practice and exposure has allowed us to navigate this potentially difficult situation. She has come amazingly far in her ability and willingness to communicate. By interacting with many of the same people over the years, there is a comfort level on the other side of the conversation that is most often not there the first time somebody meets RJC. That comfort level allows her a modicum of independence. I also think about how I am not a fan of autism, per se, but how lucky I am that because of autism I often see the best of people. My child allows people to show the best side of themselves with their patience, their understanding, their compassion...and never their condescension. While it is true, we have also seen the very worst side of people, today it was all positive. Today at the mall, every interaction was a positive one.
In the battle of Mall vs. Autism during this holiday season, neither one of them won. They played on the same team so we all won. Wishing you all smooth sailing at your next trip to the mall - holiday season or not :) !
Saturday, December 13, 2014
Tuesday, November 18, 2014
Communication Challenges. It's What We Live.
I have been noticing how complicated communication is for RJC. Not like I haven't know this for years upon years, but now that she is making so many efforts to be social and to communicate, I can see how incredibly difficult this is and I feel for her. Communication is complicated in general, but when one adds autism into the mix it is overwhelmingly complicated. All day every day, we find ourselves in social situations. We need to make ourselves understood and understand others. Imagine knowing what you want to say but not being able to make yourself understood. Or hearing words come out of other people but not understanding what they are saying to you. The frustration, the confusion, the helplessness.
We work very hard in making RJC as independent as possible. Yet communication is a large part of being able to be independent, and this is one area where she is sorely lacking. Take the case of restaurants for example. For her to order her food herself we need to directly teach her what words to use. We basically give her a script to memorize. There are problems with this method. We cannot possibly know every question that will come her way. We cannot count on every wait person to have the patience to listen and attempt to understand her language, We cannot possibly know how each restaurant prepares a specific food, therefore ordering the same food in different restaurants has different results. For example, a Chicken Caesar Wrap, can result in getting tomatoes which she does not like, or not getting croutons, which she does like.
The other night when we were out, RJC ordered dinner and the waiter had less than no clue what she said. Granted, her syntax was incorrect, but surely the sentence "cheddar cheese soup and six packs of crackers in a bowl" isn't difficult to figure out. Neither is "cold water with ice cubes." So what the was problem? Did he stop listening because the sentence was oddly worded? Did she make him nervous because she was obviously not a "typical" twenty-two year old? Am I so used to her wording that I don't understand why others don't understand? Was he turned off by the fact that she was telling him what she wanted in a very scripted tone of voice? Whatever it was, she finished telling him what she wanted and I needed to repeat what she said (well, maybe "translate" is a better word to use than "repeat"). I imagine that is frustrating for her.
Even when she is able to communicate her general needs to the world, the world communicates back to her in complicated ways. While she is capable of ordering what she wants, there are often questions that come out of the blue that make no sense to her. For example, she may be asked questions like, "Do you want to make a donation to ___", Do you want that made with whole milk, skim milk or 2%?" "Do you have our rewards card?" People generally speak quickly and there is a good chance that while they were asking her a question she was talking about her purple friend, "Barney." After all, she put in her order. She was done. There is no concept that this is a two-way communication. Even if she was aware, she couldn't answer the questions that come at her because we cannot necessarily know the options that she would be asked, in order to teach her the correct response.
And this is just a restaurant! Add in the rest of her day and all of the communication that has to take place in order to be a part of the social scene and it's overwhelming. Is it really any wonder that meltdowns occur? Or that she escapes into the familiar scripts from Barney, Sesame Street or Wee Sing? Or that when we go to the mall she wants to go into the same stores in the same order?
It's amazing that she is as happy as she is. That she continues to work at socializing at all. That she navigates through a confusing world as well as she does.
We will continue to do our best to give her tools to communicate. Going back to the same places is helpful - she gets to know the menus, the staff get to know her, understand her, and come to a comfort level communicating with her. On top of that, we truly do not know what she is capable of or what she really understands so it is important that we continue to work on the proper use of pronouns, getting her to listen to others and try to answer questions. We also never know when she will meet up with some wonderful person who will work to understand her so that she can be independent in her interaction. We love those situations.
Communication challenges. It's what we live.
We work very hard in making RJC as independent as possible. Yet communication is a large part of being able to be independent, and this is one area where she is sorely lacking. Take the case of restaurants for example. For her to order her food herself we need to directly teach her what words to use. We basically give her a script to memorize. There are problems with this method. We cannot possibly know every question that will come her way. We cannot count on every wait person to have the patience to listen and attempt to understand her language, We cannot possibly know how each restaurant prepares a specific food, therefore ordering the same food in different restaurants has different results. For example, a Chicken Caesar Wrap, can result in getting tomatoes which she does not like, or not getting croutons, which she does like.
The other night when we were out, RJC ordered dinner and the waiter had less than no clue what she said. Granted, her syntax was incorrect, but surely the sentence "cheddar cheese soup and six packs of crackers in a bowl" isn't difficult to figure out. Neither is "cold water with ice cubes." So what the was problem? Did he stop listening because the sentence was oddly worded? Did she make him nervous because she was obviously not a "typical" twenty-two year old? Am I so used to her wording that I don't understand why others don't understand? Was he turned off by the fact that she was telling him what she wanted in a very scripted tone of voice? Whatever it was, she finished telling him what she wanted and I needed to repeat what she said (well, maybe "translate" is a better word to use than "repeat"). I imagine that is frustrating for her.
Even when she is able to communicate her general needs to the world, the world communicates back to her in complicated ways. While she is capable of ordering what she wants, there are often questions that come out of the blue that make no sense to her. For example, she may be asked questions like, "Do you want to make a donation to ___", Do you want that made with whole milk, skim milk or 2%?" "Do you have our rewards card?" People generally speak quickly and there is a good chance that while they were asking her a question she was talking about her purple friend, "Barney." After all, she put in her order. She was done. There is no concept that this is a two-way communication. Even if she was aware, she couldn't answer the questions that come at her because we cannot necessarily know the options that she would be asked, in order to teach her the correct response.
And this is just a restaurant! Add in the rest of her day and all of the communication that has to take place in order to be a part of the social scene and it's overwhelming. Is it really any wonder that meltdowns occur? Or that she escapes into the familiar scripts from Barney, Sesame Street or Wee Sing? Or that when we go to the mall she wants to go into the same stores in the same order?
It's amazing that she is as happy as she is. That she continues to work at socializing at all. That she navigates through a confusing world as well as she does.
We will continue to do our best to give her tools to communicate. Going back to the same places is helpful - she gets to know the menus, the staff get to know her, understand her, and come to a comfort level communicating with her. On top of that, we truly do not know what she is capable of or what she really understands so it is important that we continue to work on the proper use of pronouns, getting her to listen to others and try to answer questions. We also never know when she will meet up with some wonderful person who will work to understand her so that she can be independent in her interaction. We love those situations.
Communication challenges. It's what we live.
Monday, September 22, 2014
What a Difference Six Months Makes.
Some changes took place in the last six months and what a difference six months makes!
The first adult program that RJC was in did not work out. They said there were constant behavioral issues with her. They wrote reports - none of which I actually saw - but they made sure to let me know they were writing them. For my part, I was frustrated that she spent her day playing Wii games. She did not go out in the community on a regular basis due to said behavioral issues. One thing led to the other and we made the decision to move her to a different program.
Fast forward six months. She has been in a new program that focuses on daily living skills. Though her start was a bit rocky, she settled in. She has been going out on a daily basis, and she has generalized skills she practices there. When we leave the dishwasher open she takes that as her cue to empty it and she does - no verbal prompting necessary. Same with folding towels - leave them out and she independently folds them.
The staff at her new program "get" her, like her, and she is very aware and sensitive to this. During the rocky period our Behavior Analyst and I met with the staff and we developed strategies to help her during her difficult times. They not only accepted the input but put it into action. It was a team approach which I was used to from her school days. Once she was in a more positive and supportive environment she once again began to thrive. Her language acquisition picked up, her use of language over tantrums picked up, and her demeanor was generally more calm and happy.
Once she was stable in her day program, we focused on what she can do after her day was over. After all, she was out of her program at 3 PM. In her school years she had an extended program until 7 PM. We added another day for horseback riding lessons and working on the farm. It has been beyond awesome. We then added a gym membership. She has gone from five minutes on the bike to twenty - twenty-five minutes on the bike. She listens to music that added for her on my iPhone and pedals happily. Before we go home she sits on the couch near the front desk and rests. The staff comes by to chat with her and she is part of the tapestry of the gym.
Six months ago I was stressed and a loss of what to do. I needed to get my tush in gear and make some changes but the thought of doing that was overwhelming. The good news is that I did indeed make the changes that needed to be made. She is busy with activities that add to the quality of her life. Her day program has meaning, her afternoons have meaning, and she is happy.
What a difference six months makes when we make them make a difference.
The first adult program that RJC was in did not work out. They said there were constant behavioral issues with her. They wrote reports - none of which I actually saw - but they made sure to let me know they were writing them. For my part, I was frustrated that she spent her day playing Wii games. She did not go out in the community on a regular basis due to said behavioral issues. One thing led to the other and we made the decision to move her to a different program.
Fast forward six months. She has been in a new program that focuses on daily living skills. Though her start was a bit rocky, she settled in. She has been going out on a daily basis, and she has generalized skills she practices there. When we leave the dishwasher open she takes that as her cue to empty it and she does - no verbal prompting necessary. Same with folding towels - leave them out and she independently folds them.
The staff at her new program "get" her, like her, and she is very aware and sensitive to this. During the rocky period our Behavior Analyst and I met with the staff and we developed strategies to help her during her difficult times. They not only accepted the input but put it into action. It was a team approach which I was used to from her school days. Once she was in a more positive and supportive environment she once again began to thrive. Her language acquisition picked up, her use of language over tantrums picked up, and her demeanor was generally more calm and happy.
Once she was stable in her day program, we focused on what she can do after her day was over. After all, she was out of her program at 3 PM. In her school years she had an extended program until 7 PM. We added another day for horseback riding lessons and working on the farm. It has been beyond awesome. We then added a gym membership. She has gone from five minutes on the bike to twenty - twenty-five minutes on the bike. She listens to music that added for her on my iPhone and pedals happily. Before we go home she sits on the couch near the front desk and rests. The staff comes by to chat with her and she is part of the tapestry of the gym.
Six months ago I was stressed and a loss of what to do. I needed to get my tush in gear and make some changes but the thought of doing that was overwhelming. The good news is that I did indeed make the changes that needed to be made. She is busy with activities that add to the quality of her life. Her day program has meaning, her afternoons have meaning, and she is happy.
What a difference six months makes when we make them make a difference.
Friday, July 11, 2014
The Hard Thing to Do is the Right Thing to Do
I really struggled with sending RJC to overnight camp for two weeks this summer. With her increase in communication skills, she was incredibly crystal clear that she absolutely did not want to go to camp. She wanted to stay home. She left no doubt about that.
The guilt for the week before we took her to camp was incredibly strong and kept me up nights. I believed, logically, that sending her to camp was the right thing to do for her and for me. In my heart, I hated that I was forcing her to do something she did not want to do. I worried because I did not know why she did not want to go - her communication skills just are not that developed for us to have that conversation. As her sister was a counselor there last year (and this year) we had many conversations where she assured me that last year RJC was completely happy. I knew that food was an issue last summer - she really did not like the camp food and was probably hungry. Other than that, I could not think of a bad experience she may have had.
I thought about why I wanted her to go to camp. For her benefit and mine.
For her benefit: at twenty-two years old, RJC and I are still incredibly close. We spend a great deal of time together and truth be told, we both enjoy that time. There is, however, the circle of life issue. It is simply a fact that I cannot get away from, as the years go by (and I am feeling those years, believe me). I need her to feel secure with other people. I need her to make connections with other people. I need her to communicate with other people. Being at camp for two weeks allows her to truly experience time with other people and realize that she can enjoy that time. I also wanted her to have experiences that she does not normally have on a daily basis - boating, language arts, music, swimming and other recreational activities (and taking a break from the iPad and Barney). Just as importantly, if not more importantly, she was taking care of herself more independently - using her words to communicate with people she does not know well, navigating a new schedule, sharing living space with more people. To be able to do this successfully and know that she is ok - this is the gift of overnight camp.
For my benefit: in truth, it's simple things. Sleeping uninterrupted (well, except when my own issues keep me up - lol), sleeping in the dark (heavenly), choosing how I want to spend my time, having quality time to focus on my marriage, and not having to concern myself with child care if we want to do something so we can spontaneously make a decision about what to do. Even the quiet of our household has been weird but nice. We watch television shows without Barney in the background, we do not repeat the daily schedule (or weekly schedule, or monthly schedule) a zillion times a day. Ok, twenty - fifty times a day, but it feels like a zillion.
I did do a few things to make myself more comfortable with this. I bought food for her and gave it to the camp. This way I know she is not hungry (a Jewish mother's nightmare, you know). I spoke to the counselors about helping her brush her teeth, letting her call whenever she wants to, and that I was concerned about her sleep. The camp, on their part, has emailed me to let me know she is eating just fine, the other campers get along well with her, and that she is sleeping great. She has called once - told me she went horseback riding and sounded just fine. She has only been there for five days so I can only continue to pray that the next week and change is just as positive.
Parenting any child is a challenge. No doubt about it. Add the autism spectrum to the mix and...well...it's just a different challenge that truly has me second guessing every decision. We are still making decisions for our adult daughter on the spectrum - decisions that other parents do not need to make when their child is twenty-two and older. While I worry about my younger adult daughter, it is a different type of worry. I trust that she knows how to make good decisions and we can have in depth conversations as needed. With RJC, I am making decisions that she may or may not like, but her dislikes and likes are not based on adult thinking. I have to be the adult making decisions for her and while I will always take her "wants" into account, I need to take her "NEEDS" into account. That's my job so that she will be able to have a functional, happy, safe, adult life without me. And sometimes the "wants" and the "needs" do not mesh.
That's when the hard thing to do is the right thing to do.
The guilt for the week before we took her to camp was incredibly strong and kept me up nights. I believed, logically, that sending her to camp was the right thing to do for her and for me. In my heart, I hated that I was forcing her to do something she did not want to do. I worried because I did not know why she did not want to go - her communication skills just are not that developed for us to have that conversation. As her sister was a counselor there last year (and this year) we had many conversations where she assured me that last year RJC was completely happy. I knew that food was an issue last summer - she really did not like the camp food and was probably hungry. Other than that, I could not think of a bad experience she may have had.
I thought about why I wanted her to go to camp. For her benefit and mine.
For her benefit: at twenty-two years old, RJC and I are still incredibly close. We spend a great deal of time together and truth be told, we both enjoy that time. There is, however, the circle of life issue. It is simply a fact that I cannot get away from, as the years go by (and I am feeling those years, believe me). I need her to feel secure with other people. I need her to make connections with other people. I need her to communicate with other people. Being at camp for two weeks allows her to truly experience time with other people and realize that she can enjoy that time. I also wanted her to have experiences that she does not normally have on a daily basis - boating, language arts, music, swimming and other recreational activities (and taking a break from the iPad and Barney). Just as importantly, if not more importantly, she was taking care of herself more independently - using her words to communicate with people she does not know well, navigating a new schedule, sharing living space with more people. To be able to do this successfully and know that she is ok - this is the gift of overnight camp.
For my benefit: in truth, it's simple things. Sleeping uninterrupted (well, except when my own issues keep me up - lol), sleeping in the dark (heavenly), choosing how I want to spend my time, having quality time to focus on my marriage, and not having to concern myself with child care if we want to do something so we can spontaneously make a decision about what to do. Even the quiet of our household has been weird but nice. We watch television shows without Barney in the background, we do not repeat the daily schedule (or weekly schedule, or monthly schedule) a zillion times a day. Ok, twenty - fifty times a day, but it feels like a zillion.
I did do a few things to make myself more comfortable with this. I bought food for her and gave it to the camp. This way I know she is not hungry (a Jewish mother's nightmare, you know). I spoke to the counselors about helping her brush her teeth, letting her call whenever she wants to, and that I was concerned about her sleep. The camp, on their part, has emailed me to let me know she is eating just fine, the other campers get along well with her, and that she is sleeping great. She has called once - told me she went horseback riding and sounded just fine. She has only been there for five days so I can only continue to pray that the next week and change is just as positive.
Parenting any child is a challenge. No doubt about it. Add the autism spectrum to the mix and...well...it's just a different challenge that truly has me second guessing every decision. We are still making decisions for our adult daughter on the spectrum - decisions that other parents do not need to make when their child is twenty-two and older. While I worry about my younger adult daughter, it is a different type of worry. I trust that she knows how to make good decisions and we can have in depth conversations as needed. With RJC, I am making decisions that she may or may not like, but her dislikes and likes are not based on adult thinking. I have to be the adult making decisions for her and while I will always take her "wants" into account, I need to take her "NEEDS" into account. That's my job so that she will be able to have a functional, happy, safe, adult life without me. And sometimes the "wants" and the "needs" do not mesh.
That's when the hard thing to do is the right thing to do.
Friday, June 27, 2014
Too Much Time Together?
I've been home full time for two weeks now. RJC and I are spending a huge amount of time together on a daily basis. I used to come home at 6:30 PM so my husband was spending three hours with her each day by himself. By the time I came home it was time for dinner, the nighttime routine and bed. Now that I am home full time I am doing the drop off and the pick up at her adult program, so my husband can work overtime. This means that RJC and I are together for all except six hours a day. We find activities to do together in the afternoon so she is not sitting around watching television or playing on the iPad. The down part of this...she has become so used to my presence that if I am out of site I will hear the yell "WHERE"S MOMMY?" I can literally be in the next room (and we have a small house) but I will hear the battle cry. She will direct most question to me rather than her dad. When he tries to respond she wants none of it. She has quickly gotten used to spending time together and is starting to show a dependency that concerns me.
On the other hand, there is a very positive aspect of all this time together. In just the few weeks I've been home I've had a great deal more energy, patience, and opportunity to work on some of the behaviors that are stopping her from working out in the community. She is a smart little cookie but her disruptive and sometimes frightening screaming behavior is a barrier to her future. I've decided to focus on this issue and have been working a great deal on "Use your words." For example, at her day program I was told that she was screaming because she wanted more ice cubes (I am not making this up, the girl screams over ice cubes). Our conversation went something like this:
Me: RJC, there is no more yelling. You need to use your words. How many ice cubes do you want at lunch?
RJC: Three
Me: Say, "I want three ice cubes please."
RJC: "I want three ice cubes please."
Me: Good job. No yelling. Use your words nicely.
RJC: "I want three ice cubes please."
Me: Yes. Good job.
The next day we practice in the car on the way to her program.
Me: What will you say at lunch today?
RJC: "I want three ice cubes please."
Me: That's right. There is no yelling. Use your words.
When I drop her off at her program the staff is there and we practice so the staff knows the expectation.
Me: What will you say at lunch today?
RJC: "I want three ice cubes please."
Me: Good job. There is no yelling. Use your words.
All went well that day at lunch.
The tough thing is that she does not generalize this behavior. Her initial reaction to almost everything - small and big - is to yell. If she is to ever work in the community or even when we are out and about in the community, this is not appropriate behavior. At twenty-two years old it is time to get this under control.
Since we are spending more time together, I have had more time to work on this issue. There are plenty of opportunities. We went miniature golfing and she was hot so she was yelling, "SHADE." When I say yelling, I mean loud. There were no trees for shade nearby and people were staring. She was agitated and irritated and not responsive in any way to my prompt "Use your words."
Me: RJC, you need to use your words. Stop screaming. If you use your words quietly then when we get home you can have some cookies and cream candy bar.
RJC: (thinking it over and more quietly now): No home. I want candy.
Me (slightly panicked): There is no candy bar here. It's at home. No more screaming for some candy bar (and I'm now thinking why oh why do candy bars have to melt in hot cars)?
RJC: Look over there, it's a snack bar gummy bear.
Me: (realizing there is indeed a snack bar): Do you want gummy bears at the snack bar?
RJC: Yes please.
Me: No more screaming while we play golf. It's not nice. Use your words. There is no shade here. In the summer the sun comes out. No more screaming.
RJC (giggles): It's summer. I want gummy bears. The baby is sleeping, shhhh.
Me: Yes. No more screaming. Use your words.
She held it together. I would remind her that she was doing a good job and I bought her the gummy bears.
This is a huge amount of work but since we are spending so much time together there are also many opportunities for working this on behavior.
Somehow though, I need to balance the positives of working on behaviors without allowing our relationship to turn into a dependency. My husband encourages me to get out so they still have time together without me. I have made plans for her to go to overnight camp again this summer for two weeks and she has been clear that she wants to stay home. She did fine last summer and my other daughter, who works at the camp, has reassured me a zillion times that she had fun and was not at all unhappy. While she prefers to be home because it is easier she needs to know that if I am not around she is still able to be ok. I completely understand this. Still, for me, this is a dilemma. I hate it when either of my children are unhappy. Hate it. It makes me physically ill. However, I am also incredibly aware that I am getting older and she needs to be ok without me always being in her presence. For whatever reason, this year is the year that this has become increasingly obvious to me. I wish I had worked on this issue earlier, when she was considerably younger, but I didn't. Big mistake.
So, I am working on the screaming behavior for her and BOTH of us are working on the independence issue. I am also aware that my discomfort cannot keep her from learning the skills she needs to grow into the most independent adult that she can be so that she has opportunities in her future rather than limitations.
The question remains. Too much time together? Parenting. Man. It's tough.
On the other hand, there is a very positive aspect of all this time together. In just the few weeks I've been home I've had a great deal more energy, patience, and opportunity to work on some of the behaviors that are stopping her from working out in the community. She is a smart little cookie but her disruptive and sometimes frightening screaming behavior is a barrier to her future. I've decided to focus on this issue and have been working a great deal on "Use your words." For example, at her day program I was told that she was screaming because she wanted more ice cubes (I am not making this up, the girl screams over ice cubes). Our conversation went something like this:
Me: RJC, there is no more yelling. You need to use your words. How many ice cubes do you want at lunch?
RJC: Three
Me: Say, "I want three ice cubes please."
RJC: "I want three ice cubes please."
Me: Good job. No yelling. Use your words nicely.
RJC: "I want three ice cubes please."
Me: Yes. Good job.
The next day we practice in the car on the way to her program.
Me: What will you say at lunch today?
RJC: "I want three ice cubes please."
Me: That's right. There is no yelling. Use your words.
When I drop her off at her program the staff is there and we practice so the staff knows the expectation.
Me: What will you say at lunch today?
RJC: "I want three ice cubes please."
Me: Good job. There is no yelling. Use your words.
All went well that day at lunch.
The tough thing is that she does not generalize this behavior. Her initial reaction to almost everything - small and big - is to yell. If she is to ever work in the community or even when we are out and about in the community, this is not appropriate behavior. At twenty-two years old it is time to get this under control.
Since we are spending more time together, I have had more time to work on this issue. There are plenty of opportunities. We went miniature golfing and she was hot so she was yelling, "SHADE." When I say yelling, I mean loud. There were no trees for shade nearby and people were staring. She was agitated and irritated and not responsive in any way to my prompt "Use your words."
Me: RJC, you need to use your words. Stop screaming. If you use your words quietly then when we get home you can have some cookies and cream candy bar.
RJC: (thinking it over and more quietly now): No home. I want candy.
Me (slightly panicked): There is no candy bar here. It's at home. No more screaming for some candy bar (and I'm now thinking why oh why do candy bars have to melt in hot cars)?
RJC: Look over there, it's a snack bar gummy bear.
Me: (realizing there is indeed a snack bar): Do you want gummy bears at the snack bar?
RJC: Yes please.
Me: No more screaming while we play golf. It's not nice. Use your words. There is no shade here. In the summer the sun comes out. No more screaming.
RJC (giggles): It's summer. I want gummy bears. The baby is sleeping, shhhh.
Me: Yes. No more screaming. Use your words.
She held it together. I would remind her that she was doing a good job and I bought her the gummy bears.
This is a huge amount of work but since we are spending so much time together there are also many opportunities for working this on behavior.
Somehow though, I need to balance the positives of working on behaviors without allowing our relationship to turn into a dependency. My husband encourages me to get out so they still have time together without me. I have made plans for her to go to overnight camp again this summer for two weeks and she has been clear that she wants to stay home. She did fine last summer and my other daughter, who works at the camp, has reassured me a zillion times that she had fun and was not at all unhappy. While she prefers to be home because it is easier she needs to know that if I am not around she is still able to be ok. I completely understand this. Still, for me, this is a dilemma. I hate it when either of my children are unhappy. Hate it. It makes me physically ill. However, I am also incredibly aware that I am getting older and she needs to be ok without me always being in her presence. For whatever reason, this year is the year that this has become increasingly obvious to me. I wish I had worked on this issue earlier, when she was considerably younger, but I didn't. Big mistake.
So, I am working on the screaming behavior for her and BOTH of us are working on the independence issue. I am also aware that my discomfort cannot keep her from learning the skills she needs to grow into the most independent adult that she can be so that she has opportunities in her future rather than limitations.
The question remains. Too much time together? Parenting. Man. It's tough.
Friday, May 30, 2014
Isolation. One of the Realities.
Isolation is one of the realities of our family. We are often alone together. This is not necessarily bad, nor is it necessarily good. It just is what it is.
We were talking at dinner tonight about one of the realities of having an adult child with autism - the isolation of our family unit. Not that we are shunned or ignored or that people run screaming from us in the other direction. It's partly the result of having a child on the spectrum, partly from being exhausted (often from issues related to have a child on the spectrum), and partly due to the logistics of trying to plan adult time away. All of this equals isolation for our family as it becomes easier to simply stay home together. I have often told my husband that we would do just fine on an island by ourselves as we are pretty used to that. The island would be warmer and prettier than our house though.
Our younger daughter informed us that married couples spend less time with other people. It's apparently been researched. I can vouch that this is true for this married couple. Add to that the reality of having a soon-to-be twenty-two year old who cannot be alone. Ever. This means we have to plan everything ahead of time if we want to have any adult time, be it just the two of us as a couple or if we want to do something with other adults. Planning includes finding somebody to watch RJC and paying somebody to watch her. On top of that, there is no spontaneity. It's not like we turn to each other and say, "Hey, let's go to ___ tonight!" Other couples are pretty much freed up when their kids are 12,13,14? And certainly they are no longer paying babysitters as they can have their kids invite other kids to come over and hang out so they are not completely alone. This is not an option for us.
This makes for a complicated family dynamic. I can get melancholy, feeling like I'm missing out or tied down to my house. I miss my gal friends a great deal. But when I have an opportunity to get together with them I feel guilty that my husband is left behind with our gal (though he assures me it's fine). Going away for a weekend? I would absolutely love to but that is a long time to leave the two of them on their own. On top of that I feel guilty going away for a weekend and leaving my husband behind when we rarely get away ourselves. So even if I were to get away I'm not sure I'd actually relax and enjoy it. With all of this negative emotion associated with getting away it's not a surprise that we don't. And so the result is isolation.
I should point out that the unexpected benefit is that our little family spends much more time together than many families I know. We eat dinner together every night then watch some tv - Red Sox for sure - while we snack together. For the most part our Saturdays and Sundays are also spent together (though my husband may work a few hours). RJC plans our weekends and we can usually sneak in some errand that we need to do as well but again...we do it together. When we do have the opportunity to vacation we are constantly thinking about how to plan a vacation that RJC can not only tolerate but will enjoy, and secondary to that is the consideration of what the rest of us will enjoy. Sometimes the attempt to plan is overwhelming and we simply do not go on vacation. As a side note, Disney really ruined our one awesome vacation that our family counted on. Thinking about it - our social life is almost completely planned by our almost twenty-two year old on the autism spectrum. Ok, somebody else must see the irony here.
At one point we had a specific date night but my work schedule changed because there is no transportation to RJC's adult program so I spend over an hour in the car before landing at work at 9:30 AM. This also means I work until 6 PM. By then I'm not really energetic and excited to go out and about. We have recently found somebody who has started to take RJC for a good few hours on Sundays and we have tried to enjoy that time together. I will admit - I have been known to steal long naps during that time. Somewhat counterproductive to our goal of spending time together. But it's a start.
I completely understand that much of this isolation is self-imposed. My anxiety kicks in (see previous post and you will understand). But an equal amount is just reality. The reality is that there is a great deal of work to be done in planning to get out. The reality is that we have to figure out how to best pay for getting out. The reality is that we have to find somebody whose schedule allows them to watch her and who is trained to watch her. The reality is that when we do manage to have time alone we often have some errand to take care of instead of enjoying the adult time. The reality is that I'm tired. Often. And the thought of going out is then overwhelming. Which starts the cycle of isolation.
To be completely clear, I am not complaining. I am sharing our reality. I have given this a great deal of thought and I know that changes need to be made in mindset as well as actual action to be taken. Some days I'm up for it and other days, not so much. In the meantime, I will cherish the times we manage to organize adult outings, and I will just as equally embrace our isolation. For it is our reality. And it is ok.
We were talking at dinner tonight about one of the realities of having an adult child with autism - the isolation of our family unit. Not that we are shunned or ignored or that people run screaming from us in the other direction. It's partly the result of having a child on the spectrum, partly from being exhausted (often from issues related to have a child on the spectrum), and partly due to the logistics of trying to plan adult time away. All of this equals isolation for our family as it becomes easier to simply stay home together. I have often told my husband that we would do just fine on an island by ourselves as we are pretty used to that. The island would be warmer and prettier than our house though.
Our younger daughter informed us that married couples spend less time with other people. It's apparently been researched. I can vouch that this is true for this married couple. Add to that the reality of having a soon-to-be twenty-two year old who cannot be alone. Ever. This means we have to plan everything ahead of time if we want to have any adult time, be it just the two of us as a couple or if we want to do something with other adults. Planning includes finding somebody to watch RJC and paying somebody to watch her. On top of that, there is no spontaneity. It's not like we turn to each other and say, "Hey, let's go to ___ tonight!" Other couples are pretty much freed up when their kids are 12,13,14? And certainly they are no longer paying babysitters as they can have their kids invite other kids to come over and hang out so they are not completely alone. This is not an option for us.
This makes for a complicated family dynamic. I can get melancholy, feeling like I'm missing out or tied down to my house. I miss my gal friends a great deal. But when I have an opportunity to get together with them I feel guilty that my husband is left behind with our gal (though he assures me it's fine). Going away for a weekend? I would absolutely love to but that is a long time to leave the two of them on their own. On top of that I feel guilty going away for a weekend and leaving my husband behind when we rarely get away ourselves. So even if I were to get away I'm not sure I'd actually relax and enjoy it. With all of this negative emotion associated with getting away it's not a surprise that we don't. And so the result is isolation.
I should point out that the unexpected benefit is that our little family spends much more time together than many families I know. We eat dinner together every night then watch some tv - Red Sox for sure - while we snack together. For the most part our Saturdays and Sundays are also spent together (though my husband may work a few hours). RJC plans our weekends and we can usually sneak in some errand that we need to do as well but again...we do it together. When we do have the opportunity to vacation we are constantly thinking about how to plan a vacation that RJC can not only tolerate but will enjoy, and secondary to that is the consideration of what the rest of us will enjoy. Sometimes the attempt to plan is overwhelming and we simply do not go on vacation. As a side note, Disney really ruined our one awesome vacation that our family counted on. Thinking about it - our social life is almost completely planned by our almost twenty-two year old on the autism spectrum. Ok, somebody else must see the irony here.
At one point we had a specific date night but my work schedule changed because there is no transportation to RJC's adult program so I spend over an hour in the car before landing at work at 9:30 AM. This also means I work until 6 PM. By then I'm not really energetic and excited to go out and about. We have recently found somebody who has started to take RJC for a good few hours on Sundays and we have tried to enjoy that time together. I will admit - I have been known to steal long naps during that time. Somewhat counterproductive to our goal of spending time together. But it's a start.
I completely understand that much of this isolation is self-imposed. My anxiety kicks in (see previous post and you will understand). But an equal amount is just reality. The reality is that there is a great deal of work to be done in planning to get out. The reality is that we have to figure out how to best pay for getting out. The reality is that we have to find somebody whose schedule allows them to watch her and who is trained to watch her. The reality is that when we do manage to have time alone we often have some errand to take care of instead of enjoying the adult time. The reality is that I'm tired. Often. And the thought of going out is then overwhelming. Which starts the cycle of isolation.
To be completely clear, I am not complaining. I am sharing our reality. I have given this a great deal of thought and I know that changes need to be made in mindset as well as actual action to be taken. Some days I'm up for it and other days, not so much. In the meantime, I will cherish the times we manage to organize adult outings, and I will just as equally embrace our isolation. For it is our reality. And it is ok.
Wednesday, May 21, 2014
From My Perspective - Life with Anxiety
Life with anxiety. It really needs to be addressed since it's such an integral part of my life. I usually write about RJC but today, it's all about me. I am a hugely anxious person. I have thought of this as a fault of mine. Something to get over, get past. Now, however, I think a bit differently. Like RJC's autism, anxiety is just part of who I am. I'd like it if it weren't part of my life, but since it is well, it just is.
From my perspective anxiety is a constant. Sometimes I am physically ill from the worry and angst. But often, anxiety is like an old bathrobe. I'm used to it. It's with me all the time. I work around it, with it, and through it.
I have met the kindest of people who tell me that I am "amazing" and "special" and that they "just don't know how I do it." While I totally appreciate the message I feel like I am deceiving them. Trust me when I say, I am neither amazing or special, and in truth, if they needed to do "it" for their child, they would. It might look different than how I do it, but they'd love and cherish and take care of their child just as I do. What I think some may not realize is how anxious I am on a daily basis.
What creates the most anxiety for me? Decisions we make are generally hit or miss and planning is all consuming on a daily basis and in the long term. This is not to say I wish my gal was different. I cannot ever imagine my life without RJC or life with her without her and her autism hanging around. It's part of who she is and I am completely at peace with that. Totally comfortable. But along with the autism piece comes anxiety which is sort of a byproduct - a side effect, if you will.
Often, this anxiety can be managed. Sort of and usually, anyway. I've kind of learned to embrace it and go with it - except on the really bad days but I'm only human. My husband is very familiar with my moments of high anxiety. It's when I cannot sleep and I walk around moaning and complaining and venting. On the positive side, I have an internal anxiety meter and when it starts to get above a 5 (on a scale from 1-10) then I know that this means something is definitely not working. So it's actually useful!
When does anxiety kick in? When she is not in my eyesight. On a daily basis this is the manageable kind. I have thoughts in the back of my mind such as: Is the ok? Is she with somebody who is taking good care of her? Is she safe? Is she having fun? Is she learning? Is she physically comfortable? Is she happy? Is she...well...there you have it. It is a constant in my brain. When I'm at work it's looming in the background. When my husband and I go out for dinner it's looming in the background. When we steal a weekend away, it's looming in the background. Sometimes it moves to the foreground and I cannot let it go. I have to call to be sure everything is ok. It's almost like that dull ache of an annoying tooth - not quite an all out toothache but it cannot exactly be ignored. I can easily get through it though, once I've put it in check. On the positive side, this mild anxiety has led me to make changes. We have learned that getting help from other people is helpful to all of us, we have changed her program when necessary, we have added activities that she loves that keep her busy and offer social and vocational opportunities. On the negative side, anxiety has kept me from doing things that other people would not think twice about doing. Going on an airplane with my husband? Nope. If something happens to both of us... I have enough anxiety getting in the car when it's just the two of us. I swear, I think we should be like the President and Vice President and always take separate cars. While I know this is impractical, it's still my thought process. So far...I've managed to get through that one. Taking a weekend with some girlfriends? Um...maybe...but not so far. Have not been able to make the leap. Partly because of the anxiety of leaving her, but also partly because if I do have a weekend away it feels like I should be with my husband since it rarely happens. Yep, the anxiety piece is constant and while mostly manageable it has it's plusses and minuses.
Anxiety kicks in anytime we have to make some decision that concerns RJC. They are often hit or miss. I think them out. Thoroughly. I am just never sure if my thought process will land us in the right place. Take the sleep issue - or lack thereof. My gal's sleep pattern has always been varied. There have been stretches of times when she has slept beautifully, then she goes through spurts of waking up yelling and not going back to sleep. I've tried a bunch of things. Melatonin - various dosages, various types, giving it to her at various times. Letting her stay up until she indicates that the is tired, rather than getting her to sleep at a certain time. Getting her to sleep at a certain team rather than waiting for her to indicate that she is tired. Hard mattress, softer mattress. Various blankets. Keeping it warmer in the house, keeping it cooler in the house. The latest suggestion from the doctor? Tylenol PM. Of course, I spent time talking to the poor pharmacist about all sorts of issues that may or may not arise, turning it upside down in my head to be sure this may work. But in truth. It's hit or miss. And even if it's a "hit' it may be temporary. Then we start again. This is how every decision is because the input RJC is able to give is limited. It's tiring and scary...and creates anxiety.
Planning on a daily basis. Definitely anxiety producing but generally manageable. RJC needs 24/7 supervision. We are very, very, beyond lucky to have some help but we still need to be meticulous in scheduling so the ball doesn't get dropped. It'd be awful to have nobody picking her up, or to have an appointment and realize there is no way to make it. Little things that can become big problems such as: do we have enough bagels so she will eat something in the morning? Who is dropping off and picking up at the day program? One of us needs to work overtime or fit in an appointment - how's that gong to happen? Vacation? That brings planning to a different level. What hotel will work? Do they have a pool? What activities can we do that we would all enjoy? Are there restaurants that have the limited foods she will eat nearby? All anxiety producing but usually manageable.
Then there is planning for the long term. Hugely anxiety provoking. This really came to the surface when she turned 21 and the reality of us getting older and her getting older really sunk in. We've talked about different possibilities, we went to visit a farm (yeah...no). We know what we'd like (in theory) but it does not seem to exist. The idea of creating our own long term program is overwhelming and gives me the biggest headache ever. The financial implications, the legal implications...yikes. And somehow we have to do this while working full time, meeting the needs of our other daughter (though she is an adult, we never stop worrying about our kids), making sure our marriage survives, keeping the house from falling down and you know...eating and sleeping someplace in there. So far that too has been manageable.
I do think it's possible that my anxiety is over the top at times. Sleepless nights for sure. Feeling weepy (I really, really hate that) or grumpy (other people really, really hate that). The medication thing - been there done that years ago - no thank you. So I drive my husband crazy, my friends crazy, and muddle through. I try to enjoy the adventure as it is. And so I move forward, anxiety and all.
That's my perspective on life with anxiety.
From my perspective anxiety is a constant. Sometimes I am physically ill from the worry and angst. But often, anxiety is like an old bathrobe. I'm used to it. It's with me all the time. I work around it, with it, and through it.
I have met the kindest of people who tell me that I am "amazing" and "special" and that they "just don't know how I do it." While I totally appreciate the message I feel like I am deceiving them. Trust me when I say, I am neither amazing or special, and in truth, if they needed to do "it" for their child, they would. It might look different than how I do it, but they'd love and cherish and take care of their child just as I do. What I think some may not realize is how anxious I am on a daily basis.
What creates the most anxiety for me? Decisions we make are generally hit or miss and planning is all consuming on a daily basis and in the long term. This is not to say I wish my gal was different. I cannot ever imagine my life without RJC or life with her without her and her autism hanging around. It's part of who she is and I am completely at peace with that. Totally comfortable. But along with the autism piece comes anxiety which is sort of a byproduct - a side effect, if you will.
Often, this anxiety can be managed. Sort of and usually, anyway. I've kind of learned to embrace it and go with it - except on the really bad days but I'm only human. My husband is very familiar with my moments of high anxiety. It's when I cannot sleep and I walk around moaning and complaining and venting. On the positive side, I have an internal anxiety meter and when it starts to get above a 5 (on a scale from 1-10) then I know that this means something is definitely not working. So it's actually useful!
When does anxiety kick in? When she is not in my eyesight. On a daily basis this is the manageable kind. I have thoughts in the back of my mind such as: Is the ok? Is she with somebody who is taking good care of her? Is she safe? Is she having fun? Is she learning? Is she physically comfortable? Is she happy? Is she...well...there you have it. It is a constant in my brain. When I'm at work it's looming in the background. When my husband and I go out for dinner it's looming in the background. When we steal a weekend away, it's looming in the background. Sometimes it moves to the foreground and I cannot let it go. I have to call to be sure everything is ok. It's almost like that dull ache of an annoying tooth - not quite an all out toothache but it cannot exactly be ignored. I can easily get through it though, once I've put it in check. On the positive side, this mild anxiety has led me to make changes. We have learned that getting help from other people is helpful to all of us, we have changed her program when necessary, we have added activities that she loves that keep her busy and offer social and vocational opportunities. On the negative side, anxiety has kept me from doing things that other people would not think twice about doing. Going on an airplane with my husband? Nope. If something happens to both of us... I have enough anxiety getting in the car when it's just the two of us. I swear, I think we should be like the President and Vice President and always take separate cars. While I know this is impractical, it's still my thought process. So far...I've managed to get through that one. Taking a weekend with some girlfriends? Um...maybe...but not so far. Have not been able to make the leap. Partly because of the anxiety of leaving her, but also partly because if I do have a weekend away it feels like I should be with my husband since it rarely happens. Yep, the anxiety piece is constant and while mostly manageable it has it's plusses and minuses.
Anxiety kicks in anytime we have to make some decision that concerns RJC. They are often hit or miss. I think them out. Thoroughly. I am just never sure if my thought process will land us in the right place. Take the sleep issue - or lack thereof. My gal's sleep pattern has always been varied. There have been stretches of times when she has slept beautifully, then she goes through spurts of waking up yelling and not going back to sleep. I've tried a bunch of things. Melatonin - various dosages, various types, giving it to her at various times. Letting her stay up until she indicates that the is tired, rather than getting her to sleep at a certain time. Getting her to sleep at a certain team rather than waiting for her to indicate that she is tired. Hard mattress, softer mattress. Various blankets. Keeping it warmer in the house, keeping it cooler in the house. The latest suggestion from the doctor? Tylenol PM. Of course, I spent time talking to the poor pharmacist about all sorts of issues that may or may not arise, turning it upside down in my head to be sure this may work. But in truth. It's hit or miss. And even if it's a "hit' it may be temporary. Then we start again. This is how every decision is because the input RJC is able to give is limited. It's tiring and scary...and creates anxiety.
Planning on a daily basis. Definitely anxiety producing but generally manageable. RJC needs 24/7 supervision. We are very, very, beyond lucky to have some help but we still need to be meticulous in scheduling so the ball doesn't get dropped. It'd be awful to have nobody picking her up, or to have an appointment and realize there is no way to make it. Little things that can become big problems such as: do we have enough bagels so she will eat something in the morning? Who is dropping off and picking up at the day program? One of us needs to work overtime or fit in an appointment - how's that gong to happen? Vacation? That brings planning to a different level. What hotel will work? Do they have a pool? What activities can we do that we would all enjoy? Are there restaurants that have the limited foods she will eat nearby? All anxiety producing but usually manageable.
Then there is planning for the long term. Hugely anxiety provoking. This really came to the surface when she turned 21 and the reality of us getting older and her getting older really sunk in. We've talked about different possibilities, we went to visit a farm (yeah...no). We know what we'd like (in theory) but it does not seem to exist. The idea of creating our own long term program is overwhelming and gives me the biggest headache ever. The financial implications, the legal implications...yikes. And somehow we have to do this while working full time, meeting the needs of our other daughter (though she is an adult, we never stop worrying about our kids), making sure our marriage survives, keeping the house from falling down and you know...eating and sleeping someplace in there. So far that too has been manageable.
I do think it's possible that my anxiety is over the top at times. Sleepless nights for sure. Feeling weepy (I really, really hate that) or grumpy (other people really, really hate that). The medication thing - been there done that years ago - no thank you. So I drive my husband crazy, my friends crazy, and muddle through. I try to enjoy the adventure as it is. And so I move forward, anxiety and all.
That's my perspective on life with anxiety.
Sunday, April 13, 2014
The Positive Side.
Not much is written about the positive side of autism. I know that I tend to be such a worrier that I sometimes do not look past my concerns enough in order to enjoy my gal for who she is as a person. It's not that I am not completely head over heels in love with my older child, just as I am with my younger one. It's that getting through the day to day stuff sometimes gets in the way of sitting back and objectively appreciating the little moments. I got to do that yesterday.
Yesterday it was pretty much RJC and I for a good chunk of the day. We spent time in the car traveling to and from the Aquarium, went to her favorite restaurant, and stopped at a cute beach for a short time to hang out near the water before heading home. It occurred to me that while this autism world can be all sorts of things complicated, I am a very lucky mom when I focus on the positives.
When we were visiting the Aquarium, I saw preteens and teens moping around, playing on their phones, obviously not interested in spending time with their parents - or at least not interested in looking like they were enjoying spending time with their parents. My girl however, had no such qualms. She would hold my hand and excitedly point out things of interest. "Look, there's a fish! And another fish! And more fish! And a penguin!" She was thrilled to be there and made no bones about it. People around us were alternately amused and perplexed but she paid no mind. She would go from one exhibit to the next, pointing out how cool everything was...loudly and with gusto. We went to the 4-D movie (honestly, that's what it's called) and she was completely involved, yelling at the screen and squealing when she got wet from a mist of water. Everyone in the theater knew she was there and knew how she was feeling about the movie. Every bit of her was involved in the experience. I honestly laughed out loud and felt no need to stop her from expressing herself. She was not bothering anyone and was completely immersed in her own happiness.
Next stop, one of her very favorite restaurants where they know her and remember her, even though we are only there 5-6 times a year. Employees make it a point to let her order on her own and repeat back so I can clarify. Those who are not assigned to our table will stop by just to say hi. She touches people in a way that I do not. Nobody remembers my name, but they all remember hers. She is the "Norm!" of that restaurant and it warms my heart.
We then stopped off at this little beach where she watched a guy bring in his canoe. He was having some difficulty balancing it and she laughed right at him. He smiled back a bit sheepishly when he finally landed on dry land and did not seem the least bit offended. She threw a few rocks in the water. The bigger splash, the better. It was not an expensive outing, just a stop along the way to appreciate the fact that warmer weather was here and enjoy the relaxing sounds of the water. She didn't mind making the stop. We didn't have any deep, long conversations but just enjoyed each other's presence. She was calm and though she did not want to stay long (she was quite tired out by then) she was happy enough to make the stop.
The ride home was great as she watched her DVDs and sang along. I knew exactly what scenes she was watching - over and over - and could hear her laughing at some of them and reacting to what was happening. "Oh no, he fell down!" she would shriek as she laughed and laughed, watching it again and again.
I realized, somewhere along the line that day, that most parents do not have their young adult child reach out for their hand or overtly express childlike joy. For sure, they enjoy their adult children in other ways that I will never experience with my older gal (I certainly look forward to the conversations and time spent with my younger (also) over 18 child). The difference is that RJC, while chronologically is an adult, is developmentally not anywhere near adulthood. Therefore she has no filters in terms of her emotions. While this is not a positive when dealing with the negative emotions, when I hit a day like yesterday, it's just awesome. It's a reminder of how to look at the world. A reminder to express joy and happiness over small things. A reminder to let loose, let everyone know how cool things are so they take another look. A reminder that you are part of a community and people enjoy your presence just because you are you.
Yep. There is a positive side. And we all have something to learn from my girl.
Yesterday it was pretty much RJC and I for a good chunk of the day. We spent time in the car traveling to and from the Aquarium, went to her favorite restaurant, and stopped at a cute beach for a short time to hang out near the water before heading home. It occurred to me that while this autism world can be all sorts of things complicated, I am a very lucky mom when I focus on the positives.
When we were visiting the Aquarium, I saw preteens and teens moping around, playing on their phones, obviously not interested in spending time with their parents - or at least not interested in looking like they were enjoying spending time with their parents. My girl however, had no such qualms. She would hold my hand and excitedly point out things of interest. "Look, there's a fish! And another fish! And more fish! And a penguin!" She was thrilled to be there and made no bones about it. People around us were alternately amused and perplexed but she paid no mind. She would go from one exhibit to the next, pointing out how cool everything was...loudly and with gusto. We went to the 4-D movie (honestly, that's what it's called) and she was completely involved, yelling at the screen and squealing when she got wet from a mist of water. Everyone in the theater knew she was there and knew how she was feeling about the movie. Every bit of her was involved in the experience. I honestly laughed out loud and felt no need to stop her from expressing herself. She was not bothering anyone and was completely immersed in her own happiness.
Next stop, one of her very favorite restaurants where they know her and remember her, even though we are only there 5-6 times a year. Employees make it a point to let her order on her own and repeat back so I can clarify. Those who are not assigned to our table will stop by just to say hi. She touches people in a way that I do not. Nobody remembers my name, but they all remember hers. She is the "Norm!" of that restaurant and it warms my heart.
We then stopped off at this little beach where she watched a guy bring in his canoe. He was having some difficulty balancing it and she laughed right at him. He smiled back a bit sheepishly when he finally landed on dry land and did not seem the least bit offended. She threw a few rocks in the water. The bigger splash, the better. It was not an expensive outing, just a stop along the way to appreciate the fact that warmer weather was here and enjoy the relaxing sounds of the water. She didn't mind making the stop. We didn't have any deep, long conversations but just enjoyed each other's presence. She was calm and though she did not want to stay long (she was quite tired out by then) she was happy enough to make the stop.
The ride home was great as she watched her DVDs and sang along. I knew exactly what scenes she was watching - over and over - and could hear her laughing at some of them and reacting to what was happening. "Oh no, he fell down!" she would shriek as she laughed and laughed, watching it again and again.
I realized, somewhere along the line that day, that most parents do not have their young adult child reach out for their hand or overtly express childlike joy. For sure, they enjoy their adult children in other ways that I will never experience with my older gal (I certainly look forward to the conversations and time spent with my younger (also) over 18 child). The difference is that RJC, while chronologically is an adult, is developmentally not anywhere near adulthood. Therefore she has no filters in terms of her emotions. While this is not a positive when dealing with the negative emotions, when I hit a day like yesterday, it's just awesome. It's a reminder of how to look at the world. A reminder to express joy and happiness over small things. A reminder to let loose, let everyone know how cool things are so they take another look. A reminder that you are part of a community and people enjoy your presence just because you are you.
Yep. There is a positive side. And we all have something to learn from my girl.
Sunday, March 9, 2014
Learn from My Experience.
Learn from my experience. While it is true that we are all only human, those of us who parent vulnerable adult children sometimes need to lean just a bit more toward the superhuman. We have lives in our hands, literally. Our children's happiness and safety rest on our shoulders and this needs to be embraced. It is a living, breathing issue, that needs constant monitoring and may include changes being made.
RJC's new program has been a bit of an adjustment (we had the one really bad day the first week) but since then she has been moving right along, learning the schedule and the staff's expectations. While it should come as no surprise that she is much happier and relaxed at home, it is amazing to me how big of a difference there is in her. She is a different person - more relaxed, using more language, willing to be more flexible. There's a part of my brain that screams, "WHAT WERE YOU THINKING IN WAITING TO MAKE THE CHANGE?"
I know exactly what I was thinking actually. Just some of my inner talking points:
What if we make a move and it turns out to be a bad move?
What if I cannot find another program for her?
What if I cannot find a way to transport her?
What if I just think she is not happy where she is, but she really is happy where she is?
What if the program has some of the elements I am looking for but not all of them?
What if the move confuses her?
What if she thinks she did something wrong?
It's all of the unknowns that sometimes keep me stuck where we are and afraid to take the plunge and make a change. But really. What is not an unknown in life? Nobody knows if they will have a job tomorrow, or a house, or their loved ones. I find that when I make decisions for myself I can choose to make a change or just suck stuff up for various reasons and still behave in a "normal" fashion. It's when I have to make decisions for RJC that things get dicey.
While she is quite verbal about very concrete issues, the more abstract issues are impossible for her to express. She is still not 100% reliable in her "yes" and "no" answers or in conveying accurately what she did during a specific day (she will sometimes say she went to the zoo when in actuality she is just wishing she went to the zoo). The only thing I really have to go on is communication from the program and her behavior at home.
Making the decision that the fit was not a good one took more time than it needed to because I was doubting myself. Plus, I am not a fan of conflict. I didn't want to upset the program, or my Caseworker, or the State of Ct. in general (yep, in writing that seems crazy). I did not want RJC to feel she did anything wrong or that she wasn't good enough to stay where she was. Maybe I was reading the situation wrong. Maybe this is a phase (of 7 months? Really?) that she will get through. Maybe I'm just tired and reading her moods wrong. Maybe it will get better; after all, she had that one good day a few weeks ago. Maybe if I ask to move her I'll seem picky and petty.
Lesson learned. As a parent, when you think something isn't working, it isn't working. Cut your losses and move on. Don't think about what could have been or what should have been. Deal with the here and now, do the research, trust the people you know you can trust, trust yourself, and make a move. Nobody's feelings will be hurt and if they are, they are taking the issue way too personally. For the agencies this is a business. For our children, this is their lives.
Whoa. Let me say that again. For the agencies this is a business. For our children, this is their lives.
Once a child leaves the school system and enters the adult system there is, in some ways, more flexibility. A family is not limited by the area in which they live. If a family chooses to transport their child then it does not matter where the program is as there is no law stating you must stay in a specific district. There is a right of portability - you can move your child. It's probably the best aspect of the adult world - well, that and the fact that there are no longer school vacations to do deal with every eight weeks or so. It's a bit of a mindset change but one to take full advantage of as soon as the need is evident. It also recently occurred to me that if people start moving their kids out of certain programs, at some point somebody will certainly wonder why. This is actually a quality control issue.
When I started on the path to the adult world I had expectations. Now that we are in the adult world, why would I lower those expectations? Now that I have my happy, funny, quirky gal back I will not ever doubt myself on this issue. Where and how she spends six hours a day matters greatly. Not only for those six hours but for the other twelve or so waking hours. It's not about her just being in a physical space. It's about how she is perceived and her perception of how she is perceived (I am a very strong believer in that fact that she is very aware of whether or not people are comfortable around her), it's about what she spends her time doing and whether or not it moves her daily living skills forward, it's about her being able to have fun and interact with other people. Bottom line, it's about the quality of her life.
When you think of it in those terms...learn from my experience.
RJC's new program has been a bit of an adjustment (we had the one really bad day the first week) but since then she has been moving right along, learning the schedule and the staff's expectations. While it should come as no surprise that she is much happier and relaxed at home, it is amazing to me how big of a difference there is in her. She is a different person - more relaxed, using more language, willing to be more flexible. There's a part of my brain that screams, "WHAT WERE YOU THINKING IN WAITING TO MAKE THE CHANGE?"
I know exactly what I was thinking actually. Just some of my inner talking points:
What if we make a move and it turns out to be a bad move?
What if I cannot find another program for her?
What if I cannot find a way to transport her?
What if I just think she is not happy where she is, but she really is happy where she is?
What if the program has some of the elements I am looking for but not all of them?
What if the move confuses her?
What if she thinks she did something wrong?
It's all of the unknowns that sometimes keep me stuck where we are and afraid to take the plunge and make a change. But really. What is not an unknown in life? Nobody knows if they will have a job tomorrow, or a house, or their loved ones. I find that when I make decisions for myself I can choose to make a change or just suck stuff up for various reasons and still behave in a "normal" fashion. It's when I have to make decisions for RJC that things get dicey.
While she is quite verbal about very concrete issues, the more abstract issues are impossible for her to express. She is still not 100% reliable in her "yes" and "no" answers or in conveying accurately what she did during a specific day (she will sometimes say she went to the zoo when in actuality she is just wishing she went to the zoo). The only thing I really have to go on is communication from the program and her behavior at home.
Making the decision that the fit was not a good one took more time than it needed to because I was doubting myself. Plus, I am not a fan of conflict. I didn't want to upset the program, or my Caseworker, or the State of Ct. in general (yep, in writing that seems crazy). I did not want RJC to feel she did anything wrong or that she wasn't good enough to stay where she was. Maybe I was reading the situation wrong. Maybe this is a phase (of 7 months? Really?) that she will get through. Maybe I'm just tired and reading her moods wrong. Maybe it will get better; after all, she had that one good day a few weeks ago. Maybe if I ask to move her I'll seem picky and petty.
Lesson learned. As a parent, when you think something isn't working, it isn't working. Cut your losses and move on. Don't think about what could have been or what should have been. Deal with the here and now, do the research, trust the people you know you can trust, trust yourself, and make a move. Nobody's feelings will be hurt and if they are, they are taking the issue way too personally. For the agencies this is a business. For our children, this is their lives.
Whoa. Let me say that again. For the agencies this is a business. For our children, this is their lives.
Once a child leaves the school system and enters the adult system there is, in some ways, more flexibility. A family is not limited by the area in which they live. If a family chooses to transport their child then it does not matter where the program is as there is no law stating you must stay in a specific district. There is a right of portability - you can move your child. It's probably the best aspect of the adult world - well, that and the fact that there are no longer school vacations to do deal with every eight weeks or so. It's a bit of a mindset change but one to take full advantage of as soon as the need is evident. It also recently occurred to me that if people start moving their kids out of certain programs, at some point somebody will certainly wonder why. This is actually a quality control issue.
When I started on the path to the adult world I had expectations. Now that we are in the adult world, why would I lower those expectations? Now that I have my happy, funny, quirky gal back I will not ever doubt myself on this issue. Where and how she spends six hours a day matters greatly. Not only for those six hours but for the other twelve or so waking hours. It's not about her just being in a physical space. It's about how she is perceived and her perception of how she is perceived (I am a very strong believer in that fact that she is very aware of whether or not people are comfortable around her), it's about what she spends her time doing and whether or not it moves her daily living skills forward, it's about her being able to have fun and interact with other people. Bottom line, it's about the quality of her life.
When you think of it in those terms...learn from my experience.
Saturday, February 8, 2014
And Another New Beginning
I am not always a fan of change and yet another "new beginning" was not on my list. However, things were not going well at RJC's current program. It doesn't matter why. We needed to make a change and find a new program. It had been in the back of my mind for a few months that this might need to happen, but I really wanted to make this work. I wanted her to be happy and thriving. She had just left her beloved school when she graduated in June, started a new program that didn't work out so we already had to make an adjustment, but things were still not going well. Her behaviors were escalating at home and I was getting notes and phone calls from the program that were concerning me. I knew things weren't going great but I kept thinking...it'll get better. In truth, not every program fits every person. It was not my gal's "fault" nor was it the program's "fault.' This was just not a proper fit and it was becoming very difficult. Finally, there was the proverbial "straw that broke the camel's back" and I was on the phone to my Caseworker. He immediately had a program in mind so I made the call and the wheels were in motion.
Hubby and I went to visit, along with our Caseworker and the Behavior Analyst who was now working with us at home. We went for the tour and asked a slew of questions. I was pleased to realize that we were speaking the same language - there were terms we used that we all understood. There was an underlying philosophy to this program that I was happy with...so we went for it. It meant that hubby and I both needed to adjust our work schedules and that I would be spending over an hour in the car before I finally arrived at work but it didn't matter. A change needed to be made and we all just needed to deal. The wheels of change tend to move quite slowly, as there is an approval process that includes budgetary issues, so it was a very long month before all was approved and she could make the move.
Days 1-3 were great. Then came Day 4. Not so great. In fact, it was really awful. However, what WAS great was the communication around the incident. It was immediate, it was thoughtful, it was about problem solving and not blaming. Communication centered around what steps might be helpful in the future and our input as parents was not only encouraged but welcomed. While I could have done without the situation, I was also reassured that when a situation comes up, it will be handled quickly and professionally.
We've now made it through 10 days and the last five days, all communication has been positive. She is obviously happier at home which is a huge relief. She's laughing and being silly and using her language again. She has clearly communicated that she likes her new program. The note that came home on Friday expressed that they were grasping her communication style (it's not always words, there are lots of nonverbal cues that can be tricky) and that they really enjoyed having her in the program. They explained that she could now get her own little animal to take care of and suggested a hamster as they noticed she was drawn to the one they already had there. Wow. An active observation that leads to a suggestion. How cool. As a side note, I will say that the "animal care" part of this program was something I was immediately drawn to. It's very, very cool.
And so...sometimes a new beginning is necessary. It's scary, but when it's the only thing to do then it's what needs to be done. I know I tend to procrastinate because it's the fear of jumping out of the fire and into the frying pan possibility. On top of that, change is inherently scary. Nevertheless, there comes a point when, if it's the best thing to do for your child, it's what you do.
Here's to another new beginning...
Hubby and I went to visit, along with our Caseworker and the Behavior Analyst who was now working with us at home. We went for the tour and asked a slew of questions. I was pleased to realize that we were speaking the same language - there were terms we used that we all understood. There was an underlying philosophy to this program that I was happy with...so we went for it. It meant that hubby and I both needed to adjust our work schedules and that I would be spending over an hour in the car before I finally arrived at work but it didn't matter. A change needed to be made and we all just needed to deal. The wheels of change tend to move quite slowly, as there is an approval process that includes budgetary issues, so it was a very long month before all was approved and she could make the move.
Days 1-3 were great. Then came Day 4. Not so great. In fact, it was really awful. However, what WAS great was the communication around the incident. It was immediate, it was thoughtful, it was about problem solving and not blaming. Communication centered around what steps might be helpful in the future and our input as parents was not only encouraged but welcomed. While I could have done without the situation, I was also reassured that when a situation comes up, it will be handled quickly and professionally.
We've now made it through 10 days and the last five days, all communication has been positive. She is obviously happier at home which is a huge relief. She's laughing and being silly and using her language again. She has clearly communicated that she likes her new program. The note that came home on Friday expressed that they were grasping her communication style (it's not always words, there are lots of nonverbal cues that can be tricky) and that they really enjoyed having her in the program. They explained that she could now get her own little animal to take care of and suggested a hamster as they noticed she was drawn to the one they already had there. Wow. An active observation that leads to a suggestion. How cool. As a side note, I will say that the "animal care" part of this program was something I was immediately drawn to. It's very, very cool.
And so...sometimes a new beginning is necessary. It's scary, but when it's the only thing to do then it's what needs to be done. I know I tend to procrastinate because it's the fear of jumping out of the fire and into the frying pan possibility. On top of that, change is inherently scary. Nevertheless, there comes a point when, if it's the best thing to do for your child, it's what you do.
Here's to another new beginning...
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