I have started and deleted quite a few posts lately. I worry about how things I write will be perceived. I never want to sound as though I'm complaining about my life with RJC. While it's certainly complicated at times, I am very aware that there are families dealing with much more than ours. More than that, I would not want my life any other way - I adore, love, cherish, and need both of my girls, just as they are. I started writing in the hope of bringing an awareness of our successful moments and less than successful moments, so that when our family or other families with a child diagnosed with autism ventures out in public and has an issue or two, there will be compassion instead of judgment toward us and our children.
As RJC gets older, I am incredibly aware of the responsibility of raising a child who will never be able to be independent. It is beyond overwhelming. When she hit the age of 21, it became super-duper overwhelming (yes, that is a Barney the Dinosaur reference). Most of my days look like everyone else's days. I go to work, pay our bills, do the grocery shopping. I visit with friends, chat with family, and take care of business. There is an underlying anxiety, however, that generally causes me to feel distracted and deal with stomach issues and sleepless nights (such as tonight - it is currently 4:30 a.m. and I've been up for an hour and a half) on a pretty constant basis. I cannot remember the last day I had where I wasn't worried. I've always been a worrier, I swear I was born that way. Even as a young child I could take a small issue and turn it in to the world ending in my mind. I've mastered that now, thank you very much.
So the question is - how to get through it? Until I started to really focus on that question, I did not know the answer but I have discovered through a great deal of soul searching that the way to get through it is to count on the people around you for help. That can be tough, but really, isn't that what the world is about? Helping each other get through it.
Here's who I count on:
1. My husband. He is much less anxiety ridden and has been known to talk me off a ledge here and there. He tends to deal in facts and much more in the here and now. While my imagination takes me to all sorts of bad places, he pulls me back to where we are at the moment. I remember years ago when RJC was Kindergarten age, I was in high anxiety mode. "What about" and "What if" and "How will we" was just oozing. He finally said something like, "Can we just get through Kindergarten?" Ok, the man had a point. While I find it beyond amazing (ok, and in truth, sometimes annoying) that he can be practical and logical, I am also grateful.
2. Moms of special needs children. Over the years I have been blessed, and I mean truly blessed, to have met some amazing moms of children with autism as well as moms of children with other special needs (ok, on a personal note I don't care for that term but haven't found a good replacement yet). We all parent differently, we all deal with different issues, but we all understand. It is a deep understanding that brings with it an emotional connection. We may not hang out the way other people do with their friends (we are often limited by child care issues), but we are there for each other. It is amazing how caring a community this is. When we do manage to get together, at some point talk is inevitably about our children. We don't offer sympathy, we listen and we empathize. We don't offer solutions, we offer strategies. We don't compete we support. Communication is easy in that we speak the same language. While it's not often we can get together, when we do, I leave feeling "I've got this." And I know that on those days that I may need help, there are people I can reach out to for help. There are also days that somebody will recognize that I need help and reach out on their own.
3. Family. We have been very lucky to have a family who understands if we cannot be at a wedding, funeral, Bar or Bat Mitzvah, birthday etc. Both my side of the family and my husband's side of the family are accepting, concerned, and supportive. Nobody takes it personally if we cannot make a visit happen - we have never once had an issue with a family member who is annoyed by our limitations. On the flip side, when we do attend a family event, there is no pressure. Nobody expects our gal to behave perfectly nor does anyone flip out if she doesn't. We've actually been to weddings (we never take her to the ceremony but we've partied with the bride and groom), family dinners at restaurants and plenty of visits at people's houses. We've celebrated Passover and Thanksgiving together. By far, the most memorable family understanding moment - when she literally went through a wall at a summer house that somebody was renting. Um. Yah. True story. AND that family invited us back the next summer and still invites us places! We once spent a weekend with something like18 people one big house and subjected them to Barney videos...over and over and over again. They, in turn, helped us at the beach so RJC could play in the water and I could play Scrabble. I sure came out ahead on that one! Our first family vacation only came about because of a family member who insisted that we spend a week with him at the beach. Before that we had never even attempted a vacation. It is a cherished memory. Our family has accommodated us in so many different ways - they've gone to restaurants that they know RJC can handle, even if it's not really where they want to be. They've sent us articles or links to websites they've run across; not because they think she needs "fixing" but because they care about our gal. While our family is quite spread out now, we still find a way to stay in touch and best of all, get together.
4. Friends, special needs organizations, synagogue, and various professionals. Over the years we've built relationships with friends who do not have children with special needs but who completely and totally "get it." They understand when we take our own car in case we need to dash. They come miniature golfing or bowling because they know RJC can handle those activities. They ask about our gal and are truly concerned, but not in a "poor you" sort of way. In a true friendship sort of way. They cheer us on and they feel our pain.
We've been involved for many years with Special Olympics - cannot even begin to say what that has meant to our entire family. That may need a separate blog post.
Friendship Circle offers programs so she can participate in Jewish holidays as well as general fun stuff - like cooking and drum circles. There are program that are not only for our gal but for us. We've met awesome teenagers who are incredibly capable of getting her involved in the activity of the day. We've also met people who we can simply chat with while our gal is engaged in some fun and safe activity. It's fun for her and serves as a bit of respite for us.
Our synagogue has also been an amazing source of inspiration and support. It's a safe place for us to take RJC where she is accepted and appreciated. She can actively participate in the service. By far, the most unforgettable day that I still think of as a miracle - her Bat Mitzvah. Amazing. We'd have never attempted a Bat Mitzvah if we were left to our own devices but we were encouraged and supported and the people at synagogue never waivered on the idea that she would be successful. I still look back on that day and can feel the emotion.
We have spent years developing relationships with professionals who understand our gal. Doctors, dentists, even hospital personnel (shout out to Ct. Children's Medical Center)! In her younger, more volatile days, we were given appointments at times when the office was especially quiet as there was a true understanding of her needs. We hunted around and found those professionals willing to accommodate or gal. It's stressful enough to have a sick child or child in pain, so having people to make things as easy as possible? Priceless.
There are people who take RJC out and about in the community which gives her the opportunity to do things that she'd never do with us. She meets new people and makes her own personal connection. At the same time, this gives us a chance to spend time together as a couple or spend time with Naomi without the distraction of how to keep RJC amused and safe.
5. Work. Sounds strange, I know. However, when I'm at work and focused on what I'm doing, it's a distraction from the worry. As a side note, I also happen to be very lucky that I work with caring people and have some flexibility. It can be overwhelming in some ways to hold a full time job while trying to take care of everything that needs to be done with RJC (there's appointments, phone calls, and paperwork galore) but work is also a place where the focus is on something other than autism.
I think about the world as it is, the future of both of my girls, and what I can do to get us through the day safely and it is scary and overwhelming. The key is to remembering that I am not alone. And together, we will get through it.
Sunday, December 29, 2013
Sunday, October 13, 2013
Catching up
Time for catching up. I haven't blogged since RJC started her adult program. In truth, it's been stressful and crazy and when I'm overwhelmed and feeling defeated it seems wrong to blog. I don't think I'm honest when I'm in that kind of mood. So I'm catching up on the last three months.
Here it is in a nutshell...she was participating in two programs that one agency runs. After about 5-6 days, they felt one of the programs was not a good fit and she is now exclusively attending one program. She was assigned a 1:1 for a few hours of the day which I think has been incredibly helpful. For the most part, this is a recreational program. Is this my ideal? Nope. I strongly feel that we need to develop some work skills and proper behaviors so she can be out and about in the community, but I also strongly feel that until an agency understands her and her potential issues, taking her out and about is not safe. So now what? Well, interestingly, this agency is opening another program in a few months (hopefully) that is smaller and more geared toward what I think can work for her so I am biding my time. RJC is perfectly content to attend the current program so that's incredibly positive. She looks at the calendar and is aware of other participant's birthdays. She's learned to play Wii games - I guess socially that's a positive. Still, there's tons of other stuff I'd like to see happening for her and when the new program opens I'll be an active mama and make my voice heard. Again. My plan is to help them build an amazing program so her friends who have not yet graduated will join her there. I miss her having her circle of friends. So there it is.
Outside of the program, I'm thrilled to say that she is still thriving. I think back to people who told me that once she was 5 years old she would not be able to learn as fast and her acquisition of skills would slow down. They were wrong. Very. Wrong. Her language is still emerging. I find that so much fun and just incredible. She said "I love you" completely unprompted one night - beautiful. She has developed into quite the little shopper. While I loathe shopping of any kind, she is all over grocery shopping and clothes shopping. Her self-help skills continue to develop and she is officially able to shower without my help - hair washing and all (though I pop in a few times a week...just to be sure).
Today was an awesome day. We got together with a few of her friends from her old school and went to a trampoline place and then for ice cream. It was a new experience but she plunged right in there! When we went for ice cream, our kids sat at one table together and they all ordered for themselves (we moms only piped in for clarification). It was...amazing. I truly never thought I'd see the day.
So there you have it. All caught up in just a few paragraphs!
Here it is in a nutshell...she was participating in two programs that one agency runs. After about 5-6 days, they felt one of the programs was not a good fit and she is now exclusively attending one program. She was assigned a 1:1 for a few hours of the day which I think has been incredibly helpful. For the most part, this is a recreational program. Is this my ideal? Nope. I strongly feel that we need to develop some work skills and proper behaviors so she can be out and about in the community, but I also strongly feel that until an agency understands her and her potential issues, taking her out and about is not safe. So now what? Well, interestingly, this agency is opening another program in a few months (hopefully) that is smaller and more geared toward what I think can work for her so I am biding my time. RJC is perfectly content to attend the current program so that's incredibly positive. She looks at the calendar and is aware of other participant's birthdays. She's learned to play Wii games - I guess socially that's a positive. Still, there's tons of other stuff I'd like to see happening for her and when the new program opens I'll be an active mama and make my voice heard. Again. My plan is to help them build an amazing program so her friends who have not yet graduated will join her there. I miss her having her circle of friends. So there it is.
Outside of the program, I'm thrilled to say that she is still thriving. I think back to people who told me that once she was 5 years old she would not be able to learn as fast and her acquisition of skills would slow down. They were wrong. Very. Wrong. Her language is still emerging. I find that so much fun and just incredible. She said "I love you" completely unprompted one night - beautiful. She has developed into quite the little shopper. While I loathe shopping of any kind, she is all over grocery shopping and clothes shopping. Her self-help skills continue to develop and she is officially able to shower without my help - hair washing and all (though I pop in a few times a week...just to be sure).
Today was an awesome day. We got together with a few of her friends from her old school and went to a trampoline place and then for ice cream. It was a new experience but she plunged right in there! When we went for ice cream, our kids sat at one table together and they all ordered for themselves (we moms only piped in for clarification). It was...amazing. I truly never thought I'd see the day.
So there you have it. All caught up in just a few paragraphs!
Thursday, July 18, 2013
Looking to the Future - A Visit to a Residential Farm
I am not ready to have RJC live away from us. I feel I should say that up front. We are not currently looking for a residential placement. More like...searching around and dipping a toe in to see what's out there.
I do know that when that day comes and she is ready to be more independent from us, that I want it to be a place of my choice and I want her to have had enough of a transition (a REAL transition) to be comfortable with the move. There's a few issues of course, not the least of which is that we have no idea where we will retire...and wherever she is, we'd like to be close by. Yep, I will still be hovering. Even when I'm in my golden years.
Our first step toward to considering her future was to check out a residential farm we had heard about that is located in another state. I was nervous about the visit. I checked out the website about a hundred times and called to make the appointment for the tour. Of course, I asked a bunch of questions when I called. Still, driving there and knowing we were going to see an actual residential possibility was nerve wracking.
The drive there was beautiful. It was certainly in a nice area with lots of trees and wildlife around. There wasn't traffic. The day was clear. And hot. Super hot.
We arrived and immediately noticed construction going on. We found a parking spot and went into the main building where they welcome their visitors. The woman at the desk was nice and when our tour guide came in she left us to her. The tour guide was one of the "villagers" (what they call their residents). It was just my husband and myself and a recently arrived "coworker" (what they call their staff) from overseas. Off we went.
Our tour guide was very sweet. She answered all of our questions, but was not particularly forthcoming about where we were headed. I asked her if she liked living there and she said something like, "It's good once you get to used to it. It's kind of like a group home but different." As our tour went on, I was amazed at how well she knew her way around! She took us on "shortcuts" and while I totally lost track of where we were, she totally knew every nook and cranny of that farm. She also knew almost everyone we came in contact with - villagers and (most) coworkers (though many coworkers were very recent arrivals so really, she knew everyone who had been there for more than a few days). People were very friendly. Residents always asked us where we were from (probably because they thought we may be new coworkers), and the coworkers introduced themselves and answered any questions. We saw many different workshops, along with a few that were closed due to people being on vacation. Still, there were so many businesses that we saw and everyone - villagers and coworkers - were proud to show us their work and explain what they do.
The farm itself was impressive, with many improvements going on to the physical set up. There were many businesses involved so opportunities for the villagers were varied. Our tour guide worked in two different settings and liked both. She showed us some of the items she personally had made and we were quite impressed. We were told that there are annual meetings held on the villagers' birthdays and any changes would be made to work sites when necessary. It sounded as though the villagers played an active role in choosing where they want to work. I like that. It shows a respect for their individual choices which I sometimes think can get lost in the shuffle of paperwork.
We did not see the inside of any of the houses where the villagers and coworkers live together. From the outside they looked nice. Nothing fancy, but certainly functional. It was explained that a few houses make up a neighborhood. Villagers eat in their houses but sometimes circumstances are such that they eat in another house in their neighborhood or may join in some activity with their neighborhood. There are house parents assigned to every house, and more than one resident told us about a set of house parents who live there with their younger children. It seemed as though there was a "family" type atmosphere with house parents, coworkers, and villagers all sharing living space. There is a rest time built in to the day. It reminded me of how a day is set up in Europe, where one may work in the morning, come home to lunch and to rest, then go back out to work for a few more hours in the afternoon.
All in all this was an interesting setting, though there were a few concerns I had for my RJC.
I wasn't clear on the supervision. It appeared that most of the villagers, even those who did not seem to be particularly verbal, were able to follow along and find their way around. Personally, I'd prefer much more overt supervision for RJC.
Second, the farm was so mellow that it was missing a feel of...oomph. Now it could certainly be that the day was beyond ridiculously hot (I was seriously sweating - I'm talking the run-down-your-back icky kind of sweat) so perhaps there was a lack of overall energy due to the heat. Still, I would have preferred to see more lively interactions/conversations. Mostly, everyone did what they were supposed to do and seemed happy to do so but it was awfully quiet. Don't misunderstand. I like peace and quiet as much as the next person but it was just so very mellow and quiet that it was a bit unnerving to me. It may just have been my personal "take" on the atmosphere, but I like to see and feel more energy. There also did not seem to be much air conditioning. We only saw air conditioning in the office when we first arrived, and this was a small window unit. While I am sure the fans were acceptable, I'd have preferred air conditioning for days like this. It was pretty brutal. Not that she needs to live in a palace, but I'd like her to be comfortable in her living space and her work space.
.
Third, from asking questions, I got the impression that the coworkers generally stay one year, maybe two, with a few who are there longer. When we were visiting, it seemed there was talk of new arrivals and people who were also getting ready to leave. I didn't ask how long the villagers stayed, but our tour guide said she was there "a while." I would prefer a more stable staffing situation for RJC. I think it is difficult for new people to learn how to most effectively work with her and I like her to make lasting connections.
All in all, there were so many great things about this type of setting and living arrangement. If I could use this as a blueprint and wave my wand to make some changes, I could see this being an awesome setting for RJC. As she gets older, I am sure her needs will change so I am open to returning again, especially at a different time of year when the coworkers are more settled and the weather is less oppressive. I'd be curious to see a day in the winter, as we did see quite a bit of outdoor farm work, and I'd be curious to see what goes on when that type of work is not available. There were plenty of indoor workshops as well so I'm assuming that the staffing of those get larger during the colder months.
We did not get much information about weekends. We saw a general outline of a schedule which included drama and bible study, though I assume those are voluntary. If I do return, I'd ask many more questions about the non-work hours. What happens after dinner and on weekends? Are there various therapies available? Do they go on trips outside of the farm and into the community? How involved is the surrounding community with the farm? How do they handle the boy/girl issues? Medical needs? Behavioral issues? Those were not the sort of in-depth questions we could get answered on this particular tour with this particular guide, so we'd need to return to ask more detailed questions.
I do not know of any residential settings like this in our state, and I wonder why. The general model promotes a healthy lifestyle (lots of exercise in just walking around the farm, plenty of work to keep people busy, and the menu seemed healthy). It appears to be almost self-sustaining (I imagine there are also grants, donations, and funds from the state). I also left with the impression that most coworkers do not receive a salary. Some receive a stipend or are attached to some type of social service program.
For our first venture to see something different I thought we did ok. It was overwhelming and I was tired and hot and really ready to leave by the end of the tour. It was a bit odd that nobody was around when we came back from the tour to ask us if we had any questions or just generally chit chat about what we saw. On the other hand, I wasn't surprised. It was a kind of laid back place in that way.
We'll continue to look as we hear about programs. I'm personally interested in settings that are not only the traditional group home settings, so definitely leave a comment if there is a place we should check out. At some point if we need to relocate, so be it. Just not anyplace too cold. Or too hot. It'd been to be "just right" on many levels. Looking forward to the future. A tiny step at a time.
I do know that when that day comes and she is ready to be more independent from us, that I want it to be a place of my choice and I want her to have had enough of a transition (a REAL transition) to be comfortable with the move. There's a few issues of course, not the least of which is that we have no idea where we will retire...and wherever she is, we'd like to be close by. Yep, I will still be hovering. Even when I'm in my golden years.
Our first step toward to considering her future was to check out a residential farm we had heard about that is located in another state. I was nervous about the visit. I checked out the website about a hundred times and called to make the appointment for the tour. Of course, I asked a bunch of questions when I called. Still, driving there and knowing we were going to see an actual residential possibility was nerve wracking.
The drive there was beautiful. It was certainly in a nice area with lots of trees and wildlife around. There wasn't traffic. The day was clear. And hot. Super hot.
We arrived and immediately noticed construction going on. We found a parking spot and went into the main building where they welcome their visitors. The woman at the desk was nice and when our tour guide came in she left us to her. The tour guide was one of the "villagers" (what they call their residents). It was just my husband and myself and a recently arrived "coworker" (what they call their staff) from overseas. Off we went.
Our tour guide was very sweet. She answered all of our questions, but was not particularly forthcoming about where we were headed. I asked her if she liked living there and she said something like, "It's good once you get to used to it. It's kind of like a group home but different." As our tour went on, I was amazed at how well she knew her way around! She took us on "shortcuts" and while I totally lost track of where we were, she totally knew every nook and cranny of that farm. She also knew almost everyone we came in contact with - villagers and (most) coworkers (though many coworkers were very recent arrivals so really, she knew everyone who had been there for more than a few days). People were very friendly. Residents always asked us where we were from (probably because they thought we may be new coworkers), and the coworkers introduced themselves and answered any questions. We saw many different workshops, along with a few that were closed due to people being on vacation. Still, there were so many businesses that we saw and everyone - villagers and coworkers - were proud to show us their work and explain what they do.
The farm itself was impressive, with many improvements going on to the physical set up. There were many businesses involved so opportunities for the villagers were varied. Our tour guide worked in two different settings and liked both. She showed us some of the items she personally had made and we were quite impressed. We were told that there are annual meetings held on the villagers' birthdays and any changes would be made to work sites when necessary. It sounded as though the villagers played an active role in choosing where they want to work. I like that. It shows a respect for their individual choices which I sometimes think can get lost in the shuffle of paperwork.
We did not see the inside of any of the houses where the villagers and coworkers live together. From the outside they looked nice. Nothing fancy, but certainly functional. It was explained that a few houses make up a neighborhood. Villagers eat in their houses but sometimes circumstances are such that they eat in another house in their neighborhood or may join in some activity with their neighborhood. There are house parents assigned to every house, and more than one resident told us about a set of house parents who live there with their younger children. It seemed as though there was a "family" type atmosphere with house parents, coworkers, and villagers all sharing living space. There is a rest time built in to the day. It reminded me of how a day is set up in Europe, where one may work in the morning, come home to lunch and to rest, then go back out to work for a few more hours in the afternoon.
All in all this was an interesting setting, though there were a few concerns I had for my RJC.
I wasn't clear on the supervision. It appeared that most of the villagers, even those who did not seem to be particularly verbal, were able to follow along and find their way around. Personally, I'd prefer much more overt supervision for RJC.
Second, the farm was so mellow that it was missing a feel of...oomph. Now it could certainly be that the day was beyond ridiculously hot (I was seriously sweating - I'm talking the run-down-your-back icky kind of sweat) so perhaps there was a lack of overall energy due to the heat. Still, I would have preferred to see more lively interactions/conversations. Mostly, everyone did what they were supposed to do and seemed happy to do so but it was awfully quiet. Don't misunderstand. I like peace and quiet as much as the next person but it was just so very mellow and quiet that it was a bit unnerving to me. It may just have been my personal "take" on the atmosphere, but I like to see and feel more energy. There also did not seem to be much air conditioning. We only saw air conditioning in the office when we first arrived, and this was a small window unit. While I am sure the fans were acceptable, I'd have preferred air conditioning for days like this. It was pretty brutal. Not that she needs to live in a palace, but I'd like her to be comfortable in her living space and her work space.
.
Third, from asking questions, I got the impression that the coworkers generally stay one year, maybe two, with a few who are there longer. When we were visiting, it seemed there was talk of new arrivals and people who were also getting ready to leave. I didn't ask how long the villagers stayed, but our tour guide said she was there "a while." I would prefer a more stable staffing situation for RJC. I think it is difficult for new people to learn how to most effectively work with her and I like her to make lasting connections.
All in all, there were so many great things about this type of setting and living arrangement. If I could use this as a blueprint and wave my wand to make some changes, I could see this being an awesome setting for RJC. As she gets older, I am sure her needs will change so I am open to returning again, especially at a different time of year when the coworkers are more settled and the weather is less oppressive. I'd be curious to see a day in the winter, as we did see quite a bit of outdoor farm work, and I'd be curious to see what goes on when that type of work is not available. There were plenty of indoor workshops as well so I'm assuming that the staffing of those get larger during the colder months.
We did not get much information about weekends. We saw a general outline of a schedule which included drama and bible study, though I assume those are voluntary. If I do return, I'd ask many more questions about the non-work hours. What happens after dinner and on weekends? Are there various therapies available? Do they go on trips outside of the farm and into the community? How involved is the surrounding community with the farm? How do they handle the boy/girl issues? Medical needs? Behavioral issues? Those were not the sort of in-depth questions we could get answered on this particular tour with this particular guide, so we'd need to return to ask more detailed questions.
I do not know of any residential settings like this in our state, and I wonder why. The general model promotes a healthy lifestyle (lots of exercise in just walking around the farm, plenty of work to keep people busy, and the menu seemed healthy). It appears to be almost self-sustaining (I imagine there are also grants, donations, and funds from the state). I also left with the impression that most coworkers do not receive a salary. Some receive a stipend or are attached to some type of social service program.
For our first venture to see something different I thought we did ok. It was overwhelming and I was tired and hot and really ready to leave by the end of the tour. It was a bit odd that nobody was around when we came back from the tour to ask us if we had any questions or just generally chit chat about what we saw. On the other hand, I wasn't surprised. It was a kind of laid back place in that way.
We'll continue to look as we hear about programs. I'm personally interested in settings that are not only the traditional group home settings, so definitely leave a comment if there is a place we should check out. At some point if we need to relocate, so be it. Just not anyplace too cold. Or too hot. It'd been to be "just right" on many levels. Looking forward to the future. A tiny step at a time.
Sunday, July 7, 2013
Continuing in the Face of Fear and Doubt (or) Mommy Worries
RJC is off to camp this afternoon. It's an overnight camp for two weeks and though she has been there for two weekends this past year, this is the longest time she will be away from home...and from me. A few years ago she did go to an overnight camp for a week and while it went pretty well, she also came home with a nasty, itchy, and unexplained rash. It turned her off from ever going back to camp and made me very wary of letting others take care of her. Looking back, I should not have let that scare me off from trying another camp experience but I did. On top of that, it was easier for both of us. Not the right attitude, I realize now, but it's where my head was at the time.
So why now? It is becoming increasingly obvious, even in the very short time that she has been out of school and thrust into the world of adult services, that she needs to have more skills in the area of independence. She has some impressive independent daily living skills, thanks to her most awesome school and our Board Certified Behavior Analyst! She showers with very limited help (and that includes washing her own hair), she is capable of heating food in the microwave or making herself a bagel and cream cheese, she dresses herself and can amuse herself for hours between the computer and the iPad. She can make her bed, empty the dishwasher, fold laundry (not that she does that very often) and will help take care of feeding the dog or letting her in and out of the house. The big area of dependence is: me. It's like I'm her very own teddy bear. She may not need me to do anything for her, but her preference for my physical presence is obvious. In turn, I am secure in the knowledge that she is fine. I can hear her computer in the background or can hear her buzzing around the kitchen and I have no worries about her safety. We are codependent in that way.
There was something that happened in my brain when she lost the safety net of school and I watched her struggle to get used to her new setting. In just the last two weeks I felt much older. It became very clear, crystal clear, that she would need to be able to adjust to other adults around and be ok with that. I had signed her up for camp before she graduated, and while I'm not thrilled that she is having anxiety around the idea of being gone for two weeks, I also know that this is the right thing to do. For her.
As her mommy, I do not want her to have a second of anxiety. I always want her to be happy and secure. I also know that it is part of the mommy job to figure out a way to give her that happiness and security when I'm not around. And not to be morbid about it, but at some point there is a statistical chance that I will not be around for the duration of her life. I would not be doing an important part of my mommy job if I did not prepare her for being with other people, in other settings, and finding a way to make that just as comfortable for her as when I am with her - or at least close to that level of comfort.
There are many positives in this new step. I'm sending her to camp where her sister is working. She has been there before so it is a familiar setting. I will be sending some food with her since she's quite fussy, so I won't need to worry about her being hungry. We've talked about some of the activities she'll be able to do and she seems quite thrilled about the prospect of horseback riding! There is plenty to do to that will keep her busy and she is bringing her "big Barney" with her - is there really anything else she needs?
Having her at camp for two weeks means there are perks for me...I plan to sleep in the dark every night and wake up in bed with my husband. We have plans to be away for three nights and though it includes a visit to a residential farm for adults with special needs, for the most part it's an honest-to-goodness few days vacation from work and house chores and just spending time enjoying my husband's company.
But that is NOT why she is going to camp.
She is going to camp so that we can both learn that we are ok when we are not together. That she can adapt, have fun, try new activities, maybe even try some new foods (gasp) and be able to find a way to communicate effectively with other people! She is also going to have the opportunity to be with other girls in her age range. Now that's exciting! I'm also hoping she will learn to get through difficult feelings. She's having some obvious anxiety about leaving for camp but learning to cope with that anxiety and finding out that she is an emotionally strong young lady who can make it through and come out happy and healthy on the other side of that emotion...well, what a gift. A lifelong gift really, that I cannot give to her by reading her a social story or trying to tell her she'll be ok. It's just a difficult emotional experience to get through. But the key is that I believe she can and will get through it and come out with a heightened self-esteem and self-reliance. What every mommy wants to give every child.
I don't remember who used to talk about giving their children the gifts of roots and wings (probably Oprah or Dr. Phil - lol). In any case, I get that now. It cannot be my own doubts or fears that hold me back from giving my girls their independence which leads (in my opinion) to a greater quality of life. RJC's independence will look different from my other child's independence, but nevertheless it is important to her emotional growth. Learning to cope and find a new way to be happy - now those are life skills.
The next two weeks won't be without their challenges for RJC or for me, but we will continue on and get through it and grow in ways that may surprise us. We never know what's around the corner, that's for sure, but the more tools in the toolbox, the better off we are for tackling the next challenge. So here we go...
So why now? It is becoming increasingly obvious, even in the very short time that she has been out of school and thrust into the world of adult services, that she needs to have more skills in the area of independence. She has some impressive independent daily living skills, thanks to her most awesome school and our Board Certified Behavior Analyst! She showers with very limited help (and that includes washing her own hair), she is capable of heating food in the microwave or making herself a bagel and cream cheese, she dresses herself and can amuse herself for hours between the computer and the iPad. She can make her bed, empty the dishwasher, fold laundry (not that she does that very often) and will help take care of feeding the dog or letting her in and out of the house. The big area of dependence is: me. It's like I'm her very own teddy bear. She may not need me to do anything for her, but her preference for my physical presence is obvious. In turn, I am secure in the knowledge that she is fine. I can hear her computer in the background or can hear her buzzing around the kitchen and I have no worries about her safety. We are codependent in that way.
There was something that happened in my brain when she lost the safety net of school and I watched her struggle to get used to her new setting. In just the last two weeks I felt much older. It became very clear, crystal clear, that she would need to be able to adjust to other adults around and be ok with that. I had signed her up for camp before she graduated, and while I'm not thrilled that she is having anxiety around the idea of being gone for two weeks, I also know that this is the right thing to do. For her.
As her mommy, I do not want her to have a second of anxiety. I always want her to be happy and secure. I also know that it is part of the mommy job to figure out a way to give her that happiness and security when I'm not around. And not to be morbid about it, but at some point there is a statistical chance that I will not be around for the duration of her life. I would not be doing an important part of my mommy job if I did not prepare her for being with other people, in other settings, and finding a way to make that just as comfortable for her as when I am with her - or at least close to that level of comfort.
There are many positives in this new step. I'm sending her to camp where her sister is working. She has been there before so it is a familiar setting. I will be sending some food with her since she's quite fussy, so I won't need to worry about her being hungry. We've talked about some of the activities she'll be able to do and she seems quite thrilled about the prospect of horseback riding! There is plenty to do to that will keep her busy and she is bringing her "big Barney" with her - is there really anything else she needs?
Having her at camp for two weeks means there are perks for me...I plan to sleep in the dark every night and wake up in bed with my husband. We have plans to be away for three nights and though it includes a visit to a residential farm for adults with special needs, for the most part it's an honest-to-goodness few days vacation from work and house chores and just spending time enjoying my husband's company.
But that is NOT why she is going to camp.
She is going to camp so that we can both learn that we are ok when we are not together. That she can adapt, have fun, try new activities, maybe even try some new foods (gasp) and be able to find a way to communicate effectively with other people! She is also going to have the opportunity to be with other girls in her age range. Now that's exciting! I'm also hoping she will learn to get through difficult feelings. She's having some obvious anxiety about leaving for camp but learning to cope with that anxiety and finding out that she is an emotionally strong young lady who can make it through and come out happy and healthy on the other side of that emotion...well, what a gift. A lifelong gift really, that I cannot give to her by reading her a social story or trying to tell her she'll be ok. It's just a difficult emotional experience to get through. But the key is that I believe she can and will get through it and come out with a heightened self-esteem and self-reliance. What every mommy wants to give every child.
I don't remember who used to talk about giving their children the gifts of roots and wings (probably Oprah or Dr. Phil - lol). In any case, I get that now. It cannot be my own doubts or fears that hold me back from giving my girls their independence which leads (in my opinion) to a greater quality of life. RJC's independence will look different from my other child's independence, but nevertheless it is important to her emotional growth. Learning to cope and find a new way to be happy - now those are life skills.
The next two weeks won't be without their challenges for RJC or for me, but we will continue on and get through it and grow in ways that may surprise us. We never know what's around the corner, that's for sure, but the more tools in the toolbox, the better off we are for tackling the next challenge. So here we go...
Wednesday, June 26, 2013
Let the Change Begin
Let the Change Begin. I received word today that RJC will start her new program. Tomorrow.
I went into her room and sat down on her bed to tell her the good news. I sat with her and watched as she struggled to understand what this meant. She had been asking to go back to her old school and though I told her she was "too big" the problem was that I had nothing to substitute for her old school because I did not know when she'd start her new program. I just told her, "Play with mommy." For a girl who needs and insists on structure (and by structure I mean a detailed schedule of her day), this was not good. So I sat with her as she typed away on the calendar in my iPhone, and I could literally see her coming to the understanding that she was not ever going back to her school. She asked about September and when I told her "no more school" she gave a pretty good screech. It was a struggle for her to understand and it was truly heartbreaking to watch her come to terms with what I was telling her. It made me angry that it went down this way when there really was no need to put her through this had The System worked.
I'm not sure how The System, that works with such a vulnerable and complicated population, can fail this badly at a transition that occurs for so many kids-turned-adults every single year. It seems to me that at this point in time there should be a seamless procedure in place. Nothing should be left for the end of the year. All of this paperwork should be completed by June 1st. Actually, for RJC, there were no changes after her meeting in May so why not automatically take care of the paperwork then? I didn't even know there was paperwork to be done after that meeting! I truly understand that everyone is overworked and overloaded at the end of the school year, which is exactly why this should all be done as soon as possible after a placement is found. This experience has affected RJC emotionally and I can only hope she finds a way to process it all in a calm manner.
It is my very deepest hope that we are moving forward from here. That this is our one blip in the screen for a while. What did I learn from this? I can see that I have a great deal to learn about The System. But guess what? The System has a great deal to learn about me.
Let the Change Begin. For RJC and for me. Not only is RJC making her change from school to adult day programming but I hope to find a way to change The System. Reminds me of her younger days. Looks like I have a new unpaid part-time job. Again.
I went into her room and sat down on her bed to tell her the good news. I sat with her and watched as she struggled to understand what this meant. She had been asking to go back to her old school and though I told her she was "too big" the problem was that I had nothing to substitute for her old school because I did not know when she'd start her new program. I just told her, "Play with mommy." For a girl who needs and insists on structure (and by structure I mean a detailed schedule of her day), this was not good. So I sat with her as she typed away on the calendar in my iPhone, and I could literally see her coming to the understanding that she was not ever going back to her school. She asked about September and when I told her "no more school" she gave a pretty good screech. It was a struggle for her to understand and it was truly heartbreaking to watch her come to terms with what I was telling her. It made me angry that it went down this way when there really was no need to put her through this had The System worked.
I'm not sure how The System, that works with such a vulnerable and complicated population, can fail this badly at a transition that occurs for so many kids-turned-adults every single year. It seems to me that at this point in time there should be a seamless procedure in place. Nothing should be left for the end of the year. All of this paperwork should be completed by June 1st. Actually, for RJC, there were no changes after her meeting in May so why not automatically take care of the paperwork then? I didn't even know there was paperwork to be done after that meeting! I truly understand that everyone is overworked and overloaded at the end of the school year, which is exactly why this should all be done as soon as possible after a placement is found. This experience has affected RJC emotionally and I can only hope she finds a way to process it all in a calm manner.
It is my very deepest hope that we are moving forward from here. That this is our one blip in the screen for a while. What did I learn from this? I can see that I have a great deal to learn about The System. But guess what? The System has a great deal to learn about me.
Let the Change Begin. For RJC and for me. Not only is RJC making her change from school to adult day programming but I hope to find a way to change The System. Reminds me of her younger days. Looks like I have a new unpaid part-time job. Again.
Monday, June 24, 2013
Graduation Day and Types of Tears
Turns out there are different types of tears. Graduation day proved that.
It's funny how you can build something up in your mind, and then when it comes, it's not as bad or as good as you expect. This was the case with today's graduation. I built it up to be an emotional, difficult time and it was. But not as bad as I thought. On the flip side, there were also some beautiful and memorable moments.
The graduation started out with RJC leading the graduates into the gym. "Hi Mommy, Hi Daddy, Hi Grandma, Hi Grandpa" along with shout outs to other people she knew and spotted, while waving with gusto. Couldn't help but to laugh. We all watched as the graduates took their places and we marveled that they were all in caps and gowns. That may not sound like a big deal, but to students with anxiety, sensory issues, need for routine etc. - it was a big deal. And everyone there understood that and appreciated the moment.
Every student was introduced and their teachers said a few words. The graduates came to the front of the room and stood with various degrees of understanding as to what this ceremony was all about. I watched as one student put his head on his teacher's shoulder in such a show of affection and comfort. Another student cheered himself on happily. Another had help walking over to the podium and was encouraged to stay in the general area. Each graduate had their own way of taking in the moment. This was not about their GPA and nobody spoke of scholarships. It was about them - their personalities and their growth. It was amazing to hear some of their stories - such huge accomplishments - some academic, others more about personal growth. Here's what RJC's teacher said about her:
" In May of 2005, P was blessed with another of my graduates. RJC entered P's room with another "concerned" mama wondering "Will it work?" Well it did work. And in the years with P, RJC enjoyed many great experiences. From the Big E to parks and the many great shows we saw over the years. Misunderstandings? A few. Calls to mom? A few. Maybe one or two (on a personal note, that just cracked me up). But, with P's guidance, RJC tried her best to learn and grow as a great River Street student.
When RJC came to my room, she curiously began a new journey to understand new written schedules, different workshop schedules, and of course, B's music with lemonade and popcorn on Friday. Her excitement for this made my Friday's!
RJC will soon begin working at ___ programs, both in (name cities) where I know she will make new friends. I will miss her cheerful morning greeting and her daily compliments about my "pretty glasses."
I loved it.
As wonderful as much of the ceremony was, it was impossible to get through the graduation without tears.
Some were tears of joy. I was truly so very proud of her. She has come a long, long, long way. This was obvious by the fact that she sat (relatively) quiet throughout the ceremony (though there was a bit of "Barney" talk and the standard wiggling and adjusting of clothing). We were blessed to have some special people join us - those professionals who were there for the very rough beginning years and who were the first ones who changed our lives for the better. There were some friends who missed work to share this moment and be supportive (as they always are). My in-laws came and they have been there quite literally since day one. I watched as two friends representing the parents of the school stood up and spoke eloquently (and with just a bit of their own tears). It was very impressive and I felt proud to know such women and thought about how our kids just adored each other. So yes, there was definitely an element of joy.
There were also tears of amazement . I was not only proud of my own gal but of her friends who graduated with her. Over the years I've come to know these young people and in some cases, their families. We've cheered each other's kids on at various holiday shows and award ceremonies. We've shared birthdays, vacation day activities, information, achievements and frustrations. Watching the graduates today and hearing what their teachers said about them was like watching the end of a "to be continued" television series. Sort of bittersweet where you're eager to know what happens next but you're also sad that this season is over.
Then there were those tears of loss. Remembering a student who was no longer with us, who would have graduated with this class. Tears about leaving this school where they kept her safe and happy and where she was cared for emotionally and physically. Where she had an opportunity to grow academically and personally. Where the staff and administrators are completely dedicated and consistently go above and beyond. This is a huge loss to all of us. I loved being able to feel secure when I sent her off in the morning and know that if there were a problem it'd be taken care of appropriately. That if she needed something it would be given. That if I had a question, it would be answered. This is a a huge loss.
There were tears of frustration and fear in thinking about RJC's future. The short-term future. We do not have a starting date for her adult program (yes, we thought we did and I know it will start at some point but apparently there is one darn sheet of paper that has not been faxed over - don't know why. Don't know specifically who. Very frustrating). Once she does start, we have no way to know how her adjustment will be. It is starting over for all of us. I will need to figure out this new system including who to call for what issues, how to best communicate, and how to be sure my gal gets what she needs. Then there are the big issues of her safety and happiness which I've not worried about in many years. The tears of frustration and fear were plenty.
Worst of all - tears of helplessness. The knowledge that her verbal skills are limited and that she will not necessarily be able to express her feelings. She may not understand that she is leaving her school for good. If she does understand that, she may wonder why she is leaving. It is probably confusing and I worry that she'll think she did something wrong. She may feel lost or sad but not be able to express that. There will definitely be people she misses and we all know how painful that can be. And THAT made me saddest of all. Those tears were the ones that could fill an ocean.
I'm glad the day is over. It is hard to explain that I so completely and totally love my girl for who she is, yet at the same time I wish with my heart and soul that things were different. I do not want her to feel scared or confused or unhappy. Yes, I know that every mom feels this way about their children and I feel this way about my other child as well. The difference is in the understanding and processing of those feelings. She may have all of these emotions that she cannot understand or express, and I will not know exactly what she is feeling or how to help her through it. I honestly do not know what she understood about today. She may be expecting to go back to school. I am not able to talk to her about her adult program because I don't know a starting date and we cannot talk about it until it can be added to the calendar. While I know this is not my "fault" it makes me feel like I am failing her in an important way. I cannot help her prepare for her new setting right now and at some point I will just be springing it on her. That seems wrong but there is no other way. It's The System.
So here we are at Graduation Day. Amazing how I spent almost the entire year thinking about and dreading this very day. And here we are. My conclusion?
It's funny how you can build something up in your mind, and then when it comes, it's not as bad or as good as you expect. This was the case with today's graduation. I built it up to be an emotional, difficult time and it was. But not as bad as I thought. On the flip side, there were also some beautiful and memorable moments.
The graduation started out with RJC leading the graduates into the gym. "Hi Mommy, Hi Daddy, Hi Grandma, Hi Grandpa" along with shout outs to other people she knew and spotted, while waving with gusto. Couldn't help but to laugh. We all watched as the graduates took their places and we marveled that they were all in caps and gowns. That may not sound like a big deal, but to students with anxiety, sensory issues, need for routine etc. - it was a big deal. And everyone there understood that and appreciated the moment.
Every student was introduced and their teachers said a few words. The graduates came to the front of the room and stood with various degrees of understanding as to what this ceremony was all about. I watched as one student put his head on his teacher's shoulder in such a show of affection and comfort. Another student cheered himself on happily. Another had help walking over to the podium and was encouraged to stay in the general area. Each graduate had their own way of taking in the moment. This was not about their GPA and nobody spoke of scholarships. It was about them - their personalities and their growth. It was amazing to hear some of their stories - such huge accomplishments - some academic, others more about personal growth. Here's what RJC's teacher said about her:
" In May of 2005, P was blessed with another of my graduates. RJC entered P's room with another "concerned" mama wondering "Will it work?" Well it did work. And in the years with P, RJC enjoyed many great experiences. From the Big E to parks and the many great shows we saw over the years. Misunderstandings? A few. Calls to mom? A few. Maybe one or two (on a personal note, that just cracked me up). But, with P's guidance, RJC tried her best to learn and grow as a great River Street student.
When RJC came to my room, she curiously began a new journey to understand new written schedules, different workshop schedules, and of course, B's music with lemonade and popcorn on Friday. Her excitement for this made my Friday's!
RJC will soon begin working at ___ programs, both in (name cities) where I know she will make new friends. I will miss her cheerful morning greeting and her daily compliments about my "pretty glasses."
I loved it.
As wonderful as much of the ceremony was, it was impossible to get through the graduation without tears.
Some were tears of joy. I was truly so very proud of her. She has come a long, long, long way. This was obvious by the fact that she sat (relatively) quiet throughout the ceremony (though there was a bit of "Barney" talk and the standard wiggling and adjusting of clothing). We were blessed to have some special people join us - those professionals who were there for the very rough beginning years and who were the first ones who changed our lives for the better. There were some friends who missed work to share this moment and be supportive (as they always are). My in-laws came and they have been there quite literally since day one. I watched as two friends representing the parents of the school stood up and spoke eloquently (and with just a bit of their own tears). It was very impressive and I felt proud to know such women and thought about how our kids just adored each other. So yes, there was definitely an element of joy.
There were also tears of amazement . I was not only proud of my own gal but of her friends who graduated with her. Over the years I've come to know these young people and in some cases, their families. We've cheered each other's kids on at various holiday shows and award ceremonies. We've shared birthdays, vacation day activities, information, achievements and frustrations. Watching the graduates today and hearing what their teachers said about them was like watching the end of a "to be continued" television series. Sort of bittersweet where you're eager to know what happens next but you're also sad that this season is over.
Then there were those tears of loss. Remembering a student who was no longer with us, who would have graduated with this class. Tears about leaving this school where they kept her safe and happy and where she was cared for emotionally and physically. Where she had an opportunity to grow academically and personally. Where the staff and administrators are completely dedicated and consistently go above and beyond. This is a huge loss to all of us. I loved being able to feel secure when I sent her off in the morning and know that if there were a problem it'd be taken care of appropriately. That if she needed something it would be given. That if I had a question, it would be answered. This is a a huge loss.
There were tears of frustration and fear in thinking about RJC's future. The short-term future. We do not have a starting date for her adult program (yes, we thought we did and I know it will start at some point but apparently there is one darn sheet of paper that has not been faxed over - don't know why. Don't know specifically who. Very frustrating). Once she does start, we have no way to know how her adjustment will be. It is starting over for all of us. I will need to figure out this new system including who to call for what issues, how to best communicate, and how to be sure my gal gets what she needs. Then there are the big issues of her safety and happiness which I've not worried about in many years. The tears of frustration and fear were plenty.
Worst of all - tears of helplessness. The knowledge that her verbal skills are limited and that she will not necessarily be able to express her feelings. She may not understand that she is leaving her school for good. If she does understand that, she may wonder why she is leaving. It is probably confusing and I worry that she'll think she did something wrong. She may feel lost or sad but not be able to express that. There will definitely be people she misses and we all know how painful that can be. And THAT made me saddest of all. Those tears were the ones that could fill an ocean.
I'm glad the day is over. It is hard to explain that I so completely and totally love my girl for who she is, yet at the same time I wish with my heart and soul that things were different. I do not want her to feel scared or confused or unhappy. Yes, I know that every mom feels this way about their children and I feel this way about my other child as well. The difference is in the understanding and processing of those feelings. She may have all of these emotions that she cannot understand or express, and I will not know exactly what she is feeling or how to help her through it. I honestly do not know what she understood about today. She may be expecting to go back to school. I am not able to talk to her about her adult program because I don't know a starting date and we cannot talk about it until it can be added to the calendar. While I know this is not my "fault" it makes me feel like I am failing her in an important way. I cannot help her prepare for her new setting right now and at some point I will just be springing it on her. That seems wrong but there is no other way. It's The System.
So here we are at Graduation Day. Amazing how I spent almost the entire year thinking about and dreading this very day. And here we are. My conclusion?
This is not an ending, nor is it a beginning. It just is.
And so the adventure continues.
Wednesday, June 12, 2013
21. The Start of the Future.
Yesterday was RJC's 21st birthday. It was a regular day. She went to school. I went to work. The family went to Friendly's. Yet in reality, life is changing - it's just slightly delayed. On June 24th, she will officially "graduate" from school (technically she'll get a Certificate of Completion) and move on to her new adult day program. The one I obsessed over for the last 10 months or so. So, I've been thinking about where we were, where we are, and possibly...where we are going.
Where we were and where we are:
1. Language
It's hard to pinpoint when RJC started to talk. It depends on how one defines "talk" actually. It was close to age 4 or so that words emerged. Does echoing count? She became very good at repeating what was said to her, but comprehending what was said did not come until much later. She could complete a sentence if we were singing and left out a word, but that's not actually communicating a point. She could script from Barney but again, not actually communicating. Communicating in sentences came at some point, but it was a slow process that sort of unfolded. I don't think we even realized it until it was just - there.
Today, she types her daily schedule in my phone. In fact, she has me scheduled for some events in the year 2014. She writes a detailed grocery list before we go shopping. She uses language to communicate and though her syntax is unique she is almost always able to get her point across. She still has challenges with pronouns (that is SO difficult to teach) and cause and effect. She is very concrete, making abstract concepts challenging. When her grandma died it was almost impossible to explain. To this day I'm sure she does not understand what happened but she will sometimes blurt out "Grandma died" which I assume means she is thinking about her and knows that "died" means "not here and will not be back." I am sure she has no idea where grandma is, though, or why she won't come back. Nevertheless, she seems to have come to some acceptance of her own definition of the word. She still scripts but it has meaning. At night we have our ritual. She says the beginning of the Shema (a prayer in Hebrew) and then:
Goodnight Mommy.
Goodnight Rachael.
Goodnight Mommy.
Goodnight Rachael.
Thank you for the two times for Mommy.
You're welcome Rachael.
She loves music and when she has something important to talk about, she sings it. She has her own tune she usually uses, though she has been known to use a more well-known tune. For example, if she wants to remind me that we are going to the mall she may sing "Rachael is going to the mall, to four places, hidee hidee ho." Point taken.
Her language is certainly functional. She uses it to get what she needs but she also uses it simply to make a connection. Her way of using language may not be the way that we use language, but it works. In the end, that's all that matters.
2. Behavior
This is tricky. We have had so many complicated and dangerous behaviors we've dealt with over the years I don't think I could begin to describe this issue in detail - this subject is really its own book. Here's some issues that stand out. When she was very young she would tantrum multiple times a day. Kicking and pinching combined with a high pitched and constant scream. In public and at home. Sometimes we knew why, other times we had absolutely no clue. We had to hand out business cards that explained autism as we left stores and restaurants with a screaming, kicking child, just so people would not call the police. When I was pregnant with our younger daughter the doctor asked if anyone was abusing me at home because I was so black and blue. Then there was a year where she literally would cover her ears anytime we were outdoors. We had a behavior plan in place to get her to keep her hands down. Since we worked on one hand at a time, she resembled Napoleon for a good chunk of that year. We dealt with bolting behavior for many years. This meant that before she went on a field trip I felt the need to scope out the area and draw (pathetic) maps showing areas of possible concern. I lost her once in the mall. We used one of those kid harnesses for many, many years and had to endure stupid comments from strangers who were clueless. Yep - still remember feeling really ticked off by that. We had the year from hell when she was self-injurious and would literally throw herself through our walls. She would bang her head and to this day we still have little "head dents" in our hallway. That year I hardly ever went anywhere other than to work. We went to medication but no relief.
Today, behaviors continue to be challenging though different. We have a better understanding of how to use behavior plans, we know she responds positively to visuals and we have had huge amounts of support from school and our BCBA (Board Certified Behavior Analyst). She has much more language which has decreased her frustration, thus decreasing some of the behaviors. She still needs to have structure and an understanding of what will happen with her daily schedule and prefers to have it written down. Yet if we need to make a change we usually can without too much of a problem. Of course, we have also learned to avoid huge issues. For example, if we are planning a vacation to Disney, we do not tell her until the night before when we cannot push off packing any longer. This way, we know that barring any last minute unforeseeable emergency, the vacation is 99% sure to happen. Cancelling a Disney vacation would NOT go over well. She likes her routines and we have learned to respect that about her without letting it completely rule our lives. It is a very fine balance. Very. I've learned to understand that routine = comfort. Just having that understanding gives me the patience to deal with some of the behaviors that pop up when the routine is interrupted. One of the biggest behavioral challenges continues to be the screaming. We are working on it though, and making progress.
3. Awareness of Others
It used to be that she really did her own thing, preferring to hang solo - looking at herself in a mirror or watching videos. Well, really pieces of videos over and over and over again. She didn't seem to be interested in other people or even notice what was going on around her. There was a situation where her curtains in her room had somehow started to singe and her room filled with smoke. She never moved from her bed. Once we figured out where the smell of smoke was coming from we opened her door and she was just sitting there. The fire department came to our house and she barely looked at the big fire trucks (yep, plural...sigh) in our driveway and in front or our house. In fact, the next day we had a visit from the Fire Marshall asking questions about her because they were concerned that she did not even glance up at a police officer who was trying to talk to her.
Today, she notices everything. Everything. We drive in the car and she points out ambulances, dogs, police officers, restaurants and stores. She knows how to get places and when I miss a turn she bursts out laughing, totally aware that I am lost. She will comment if I get my hair cut ("Mommy, nice hair) or if the phone rings she inevitably asks, "Who's that on the phone, Mommy?" She likes to make calls to a select few people who are very important in her life. She'll take my phone and I won't even know it until I hear her talking. It is completely her initiative.
Where we are going:
I have no idea. This is a journey with no map. We are mostly along for the ride and RJC is driving. I have my dreams for her and though I tend to plan, I've gotten used to having Plan A, Plan B, Plan C, Plan D...and so on. The best plan is not written in stone, but written in sand.
What I've learned over these 21 years is that it is absolutely necessary to be flexible. Change is not necessarily bad. There are lots of ways to get a point across and it's important to listen carefully. RJC is capable of all sorts of amazing things and should not be limited by my own fears. And most important of all - letting go (just a bit) is a good thing. Hardest lesson yet and still working on that one.
21. The start of the future.
Where we were and where we are:
1. Language
It's hard to pinpoint when RJC started to talk. It depends on how one defines "talk" actually. It was close to age 4 or so that words emerged. Does echoing count? She became very good at repeating what was said to her, but comprehending what was said did not come until much later. She could complete a sentence if we were singing and left out a word, but that's not actually communicating a point. She could script from Barney but again, not actually communicating. Communicating in sentences came at some point, but it was a slow process that sort of unfolded. I don't think we even realized it until it was just - there.
Today, she types her daily schedule in my phone. In fact, she has me scheduled for some events in the year 2014. She writes a detailed grocery list before we go shopping. She uses language to communicate and though her syntax is unique she is almost always able to get her point across. She still has challenges with pronouns (that is SO difficult to teach) and cause and effect. She is very concrete, making abstract concepts challenging. When her grandma died it was almost impossible to explain. To this day I'm sure she does not understand what happened but she will sometimes blurt out "Grandma died" which I assume means she is thinking about her and knows that "died" means "not here and will not be back." I am sure she has no idea where grandma is, though, or why she won't come back. Nevertheless, she seems to have come to some acceptance of her own definition of the word. She still scripts but it has meaning. At night we have our ritual. She says the beginning of the Shema (a prayer in Hebrew) and then:
Goodnight Mommy.
Goodnight Rachael.
Goodnight Mommy.
Goodnight Rachael.
Thank you for the two times for Mommy.
You're welcome Rachael.
She loves music and when she has something important to talk about, she sings it. She has her own tune she usually uses, though she has been known to use a more well-known tune. For example, if she wants to remind me that we are going to the mall she may sing "Rachael is going to the mall, to four places, hidee hidee ho." Point taken.
Her language is certainly functional. She uses it to get what she needs but she also uses it simply to make a connection. Her way of using language may not be the way that we use language, but it works. In the end, that's all that matters.
2. Behavior
This is tricky. We have had so many complicated and dangerous behaviors we've dealt with over the years I don't think I could begin to describe this issue in detail - this subject is really its own book. Here's some issues that stand out. When she was very young she would tantrum multiple times a day. Kicking and pinching combined with a high pitched and constant scream. In public and at home. Sometimes we knew why, other times we had absolutely no clue. We had to hand out business cards that explained autism as we left stores and restaurants with a screaming, kicking child, just so people would not call the police. When I was pregnant with our younger daughter the doctor asked if anyone was abusing me at home because I was so black and blue. Then there was a year where she literally would cover her ears anytime we were outdoors. We had a behavior plan in place to get her to keep her hands down. Since we worked on one hand at a time, she resembled Napoleon for a good chunk of that year. We dealt with bolting behavior for many years. This meant that before she went on a field trip I felt the need to scope out the area and draw (pathetic) maps showing areas of possible concern. I lost her once in the mall. We used one of those kid harnesses for many, many years and had to endure stupid comments from strangers who were clueless. Yep - still remember feeling really ticked off by that. We had the year from hell when she was self-injurious and would literally throw herself through our walls. She would bang her head and to this day we still have little "head dents" in our hallway. That year I hardly ever went anywhere other than to work. We went to medication but no relief.
Today, behaviors continue to be challenging though different. We have a better understanding of how to use behavior plans, we know she responds positively to visuals and we have had huge amounts of support from school and our BCBA (Board Certified Behavior Analyst). She has much more language which has decreased her frustration, thus decreasing some of the behaviors. She still needs to have structure and an understanding of what will happen with her daily schedule and prefers to have it written down. Yet if we need to make a change we usually can without too much of a problem. Of course, we have also learned to avoid huge issues. For example, if we are planning a vacation to Disney, we do not tell her until the night before when we cannot push off packing any longer. This way, we know that barring any last minute unforeseeable emergency, the vacation is 99% sure to happen. Cancelling a Disney vacation would NOT go over well. She likes her routines and we have learned to respect that about her without letting it completely rule our lives. It is a very fine balance. Very. I've learned to understand that routine = comfort. Just having that understanding gives me the patience to deal with some of the behaviors that pop up when the routine is interrupted. One of the biggest behavioral challenges continues to be the screaming. We are working on it though, and making progress.
3. Awareness of Others
It used to be that she really did her own thing, preferring to hang solo - looking at herself in a mirror or watching videos. Well, really pieces of videos over and over and over again. She didn't seem to be interested in other people or even notice what was going on around her. There was a situation where her curtains in her room had somehow started to singe and her room filled with smoke. She never moved from her bed. Once we figured out where the smell of smoke was coming from we opened her door and she was just sitting there. The fire department came to our house and she barely looked at the big fire trucks (yep, plural...sigh) in our driveway and in front or our house. In fact, the next day we had a visit from the Fire Marshall asking questions about her because they were concerned that she did not even glance up at a police officer who was trying to talk to her.
Today, she notices everything. Everything. We drive in the car and she points out ambulances, dogs, police officers, restaurants and stores. She knows how to get places and when I miss a turn she bursts out laughing, totally aware that I am lost. She will comment if I get my hair cut ("Mommy, nice hair) or if the phone rings she inevitably asks, "Who's that on the phone, Mommy?" She likes to make calls to a select few people who are very important in her life. She'll take my phone and I won't even know it until I hear her talking. It is completely her initiative.
Where we are going:
I have no idea. This is a journey with no map. We are mostly along for the ride and RJC is driving. I have my dreams for her and though I tend to plan, I've gotten used to having Plan A, Plan B, Plan C, Plan D...and so on. The best plan is not written in stone, but written in sand.
What I've learned over these 21 years is that it is absolutely necessary to be flexible. Change is not necessarily bad. There are lots of ways to get a point across and it's important to listen carefully. RJC is capable of all sorts of amazing things and should not be limited by my own fears. And most important of all - letting go (just a bit) is a good thing. Hardest lesson yet and still working on that one.
21. The start of the future.
Saturday, June 1, 2013
Almost 21 and Reflections on the Future
I generally look at the bright side of things. It drives some of my closest friends crazy. This post, however, is about the reality of the future for my gal, RJC, and I apologize ahead of time for the less than perky attitude I have about this. I considered not writing it. I've tried to be careful of the feelings of people reading this, especially those with younger children. It's really important to me to keep positive and look at all the awesomeness of having my RJC in our lives. Yet when I started this blogging adventure I promised myself that I would stay genuine and include the ups and downs of our lives. If that included showing myself in a less-than-really-good light, so be it. I would be honest. This is where I am now...so I am sharing.
This month RJC turns 21. The 11th of this month actually. I started this blog last August when I was just considering what life would be with a 21 year old child with autism. No more mandated services. No more school. I was wondering what I'd find and how things would be for her. It's been quite the year. I've learned alot about "The Adult System" yet still do not feel like I can comfortably navigate through it and be the best advocate for my girl. I've learned alot about myself. Not all positive. I've learned alot about my RJC. Always interesting and always complicated. In fact, the overall lesson of this year is that life with RJC is, and always will be, interesting and complicated. It's finding a sense of peace with this fact that is the challenge. And right now I am soooo losing that challenge.
When I think about her long-term future - ten, twenty, thirty years down the road and more - I find it so terrifying that I literally become ill. Having seen what I've seen and spoken to other parents whose children are already in The System, I cannot imagine what her quality of life will be. It worries me that at some point she will need to find her way without me and I am concerned that I've not prepared her for that. We are making small steps toward this, I suppose, with the two weekends away and the planned two weeks away at camp this summer. She doesn't know about those two weeks since separation from me causes such high anxiety for her that it's not fair to upset her this early. Not to mention the fact that I have my own anxiety around other people caring for her. Even so, temporary vs. permanent - a whole different ballgame. How do we really, really prepare her for a more permanent separation? I think about it. I consider it. I agonize over it. I wake in the middle of the night and am sick over it. Literally. Yet I've got nothing. I don't like to discuss it if I can help it, even with my husband or closest friends, as it is such an emotionally raw issue for me that I can barely have a conversation without becoming extremely emotional. I am not rational or practical about this issue. I am concerned that I am being selfish and only thinking of myself when I decide to play the turtle and not deal with this issue. I push it off, telling myself we have plenty of time. It feels morbid and somehow unlucky to consider the thought that something will happen "prematurely." On the other hand, I feel incredibly irresponsible in not making a long-term plan now, so that she is prepared. It's quite the quandry.
Thinking long term is an emotional and complicated process. I have at least come to one certain conclusion. There is no "right" or "wrong" way. Everybody deals with the issue in their own time, in their own way, with their own child's needs being the most important consideration. Truly, I have never met a "selfish" parent of a special needs child. I have heard parents speak only with passion and concern about their child and how difficult it is to make decisions concerning their child's future. I've never spoken to one single parent who did not, very carefully, consider every angle about their child's well being - emotional and physical - when it comes to makind decions about their child . They did not consider their own needs but only the needs of their child. How awesome. I have learned from them and have been grateful to them for leading the way.
That having been said, why is this so hard? What I've learned in this past year, up close and personal, is that there are limited options because we are limited by resources. I knew this before but I was so focused on getting us through the school years that I had not spent any time really researching the adult word. Now, with my gal on the brink of being thrown into that world, the reality is setting in. It makes me sad. And it makes me mad.
These decisions would be so much easier - or at least less gut wrenching - if there were programs available that supported whole familes. If there were a recognition that this is not about one person, but about a family dynamic. Adult programs that would include parents in their children's lives on a daily basis, while working to help the child gain their independence, allowing the parent to slowly get a sense of peace around not being the primary caretaker on a minute-by-minute, day-to-day basis. Where there is a slow process of separation for the benefit of all family members' mental health. What a concept. From what I've seen, it does not exist.
I daydream that we will be able to develop a program for RJC and her friends. I can picture it. I see a big farm with horses (she loves riding and it getting quite good at chores) and a greenhouse, small cottages surrounding the area that are quaint yet spacious for the residents. A guest house for when people want to visit. Perhaps a small bed and breakfast that the residents can help to run. She chooses work based on her ability and her preference. I picture a community area where everyone eats their meals together, planned by a licensed nutritionist who understands the complicated issues around food choices. There is an indoor swimming pool complete with a hot tub (her favorite), snack bar with healthy choices, ping pong tables, table games to choose from, a reading area with plenty of picture books, a computer lab, and a music area. There is a sensory room. The staff are well paid, have excellent benefits, and are motivated to work with my gal and her friends by their passion for helping people fulfill their potential. Various therapists are available - speech therapy, OT, PT. There are classes for those who want to continue making academic progress and classes focused on life skills. Caring and trained medical and dental staff are there on at least a monthly basis and at other times they are accessible when needed. Visiting artists run workshops. I see vans that take her and her friends into town so they can enjoy the movies, going out to eat, shopping, getting exercise, and participate in community events.
Then reality sets in because unless we win the lottery (with a very big jackpot) we have limited options for her future.
I do not know what will be. On the positive side, she has a day program to start after her graduation and I am very happy with that choice. It will be an adjustment but we can do this. It's the type of adjustment that will be somewhat tricky but definitely attainable. It will have its ups and downs, no doubt, but this one transition is in our realm of capabilities.
For the longer term? I can use some help. Anyone?
This month RJC turns 21. The 11th of this month actually. I started this blog last August when I was just considering what life would be with a 21 year old child with autism. No more mandated services. No more school. I was wondering what I'd find and how things would be for her. It's been quite the year. I've learned alot about "The Adult System" yet still do not feel like I can comfortably navigate through it and be the best advocate for my girl. I've learned alot about myself. Not all positive. I've learned alot about my RJC. Always interesting and always complicated. In fact, the overall lesson of this year is that life with RJC is, and always will be, interesting and complicated. It's finding a sense of peace with this fact that is the challenge. And right now I am soooo losing that challenge.
When I think about her long-term future - ten, twenty, thirty years down the road and more - I find it so terrifying that I literally become ill. Having seen what I've seen and spoken to other parents whose children are already in The System, I cannot imagine what her quality of life will be. It worries me that at some point she will need to find her way without me and I am concerned that I've not prepared her for that. We are making small steps toward this, I suppose, with the two weekends away and the planned two weeks away at camp this summer. She doesn't know about those two weeks since separation from me causes such high anxiety for her that it's not fair to upset her this early. Not to mention the fact that I have my own anxiety around other people caring for her. Even so, temporary vs. permanent - a whole different ballgame. How do we really, really prepare her for a more permanent separation? I think about it. I consider it. I agonize over it. I wake in the middle of the night and am sick over it. Literally. Yet I've got nothing. I don't like to discuss it if I can help it, even with my husband or closest friends, as it is such an emotionally raw issue for me that I can barely have a conversation without becoming extremely emotional. I am not rational or practical about this issue. I am concerned that I am being selfish and only thinking of myself when I decide to play the turtle and not deal with this issue. I push it off, telling myself we have plenty of time. It feels morbid and somehow unlucky to consider the thought that something will happen "prematurely." On the other hand, I feel incredibly irresponsible in not making a long-term plan now, so that she is prepared. It's quite the quandry.
Thinking long term is an emotional and complicated process. I have at least come to one certain conclusion. There is no "right" or "wrong" way. Everybody deals with the issue in their own time, in their own way, with their own child's needs being the most important consideration. Truly, I have never met a "selfish" parent of a special needs child. I have heard parents speak only with passion and concern about their child and how difficult it is to make decisions concerning their child's future. I've never spoken to one single parent who did not, very carefully, consider every angle about their child's well being - emotional and physical - when it comes to makind decions about their child . They did not consider their own needs but only the needs of their child. How awesome. I have learned from them and have been grateful to them for leading the way.
That having been said, why is this so hard? What I've learned in this past year, up close and personal, is that there are limited options because we are limited by resources. I knew this before but I was so focused on getting us through the school years that I had not spent any time really researching the adult word. Now, with my gal on the brink of being thrown into that world, the reality is setting in. It makes me sad. And it makes me mad.
These decisions would be so much easier - or at least less gut wrenching - if there were programs available that supported whole familes. If there were a recognition that this is not about one person, but about a family dynamic. Adult programs that would include parents in their children's lives on a daily basis, while working to help the child gain their independence, allowing the parent to slowly get a sense of peace around not being the primary caretaker on a minute-by-minute, day-to-day basis. Where there is a slow process of separation for the benefit of all family members' mental health. What a concept. From what I've seen, it does not exist.
I daydream that we will be able to develop a program for RJC and her friends. I can picture it. I see a big farm with horses (she loves riding and it getting quite good at chores) and a greenhouse, small cottages surrounding the area that are quaint yet spacious for the residents. A guest house for when people want to visit. Perhaps a small bed and breakfast that the residents can help to run. She chooses work based on her ability and her preference. I picture a community area where everyone eats their meals together, planned by a licensed nutritionist who understands the complicated issues around food choices. There is an indoor swimming pool complete with a hot tub (her favorite), snack bar with healthy choices, ping pong tables, table games to choose from, a reading area with plenty of picture books, a computer lab, and a music area. There is a sensory room. The staff are well paid, have excellent benefits, and are motivated to work with my gal and her friends by their passion for helping people fulfill their potential. Various therapists are available - speech therapy, OT, PT. There are classes for those who want to continue making academic progress and classes focused on life skills. Caring and trained medical and dental staff are there on at least a monthly basis and at other times they are accessible when needed. Visiting artists run workshops. I see vans that take her and her friends into town so they can enjoy the movies, going out to eat, shopping, getting exercise, and participate in community events.
Then reality sets in because unless we win the lottery (with a very big jackpot) we have limited options for her future.
I do not know what will be. On the positive side, she has a day program to start after her graduation and I am very happy with that choice. It will be an adjustment but we can do this. It's the type of adjustment that will be somewhat tricky but definitely attainable. It will have its ups and downs, no doubt, but this one transition is in our realm of capabilities.
For the longer term? I can use some help. Anyone?
Wednesday, May 8, 2013
We Do, We Don't, We Do
We thought we had a program. Then we didn't. Now we do. Technically, RJC has a program. I just think of it as "ours."
I had visited program A twice. Once by myself, the second time with my husband. We specifically asked if there was room in the program for her or if there was a waiting list. It wasn't an issue. After seeing a bunch of other programs (won't even comment of some of the things we saw) we decided to go with program A. Program A went to the school to observe RJC. Seemed like it was a "go" but then we started to hear rumblings that maybe this was not a done deal. Called Program A. I was told that the state budget was a concern and they were not sure they were taking new clients. I said something like, "Aren't all of the programs going to have this problem?" but never really got an answer. Waited for them to call me back with a more definite answer. And waited. And waited. Still waiting. They never called me but my hero Caseworker got in touch with them (they had asked him for her budget) and all of a sudden...we had no program.
My husband had left town for 12 days. This happened the day after he left and here we were at the end of April with no program. My Caseworker asked "What's your second choice?" Um...yeah...not so much a second choice. I was back to square one, spouse out of town, and things needed to move quickly. I called the school and decided to visit a program that I was scheduled to see earlier in the year - twice - but both of my visits were cancelled due to snow. Program B was very accommodating so I was able to visit within two days.
This was where I could picture RJC. Program B went to her school to observe, then came to our annual PPT (Planning and Placement Team). This agency has various programs and I could envision her being successful in two of them. They are a flexible enough program to accommodate that - and she will start off splitting her time between a work program and a more recreational program. My plan with RJC is always about being flexible so we'll see what works and what doesn't. Program B is willing to do the same.
I'm trying not to get too excited. There are huge state budget issues that are very precarious. We have to talk about a start date. RJC will be visiting soon, spending some days there with somebody from her current school. We have a really really really good possibility. I am hopeful that our state will do the right thing with the budget. I am hopeful that transportation will work out. I am hopeful that aftercare will work out since she will only be in a program for six hours per day. I am hopeful that the zillion pieces that need to fit together will come together quickly.
There is some sense of relief even if there are still issues up in the air. RJC has absolutely no comprehension of her graduation. We will soon be sharing ideas of how to best help her make this transition. Once we figure that out, we will need to share ideas of how to help me best make this transition...but that's for another post.
For now...we have a program. Phew.
I had visited program A twice. Once by myself, the second time with my husband. We specifically asked if there was room in the program for her or if there was a waiting list. It wasn't an issue. After seeing a bunch of other programs (won't even comment of some of the things we saw) we decided to go with program A. Program A went to the school to observe RJC. Seemed like it was a "go" but then we started to hear rumblings that maybe this was not a done deal. Called Program A. I was told that the state budget was a concern and they were not sure they were taking new clients. I said something like, "Aren't all of the programs going to have this problem?" but never really got an answer. Waited for them to call me back with a more definite answer. And waited. And waited. Still waiting. They never called me but my hero Caseworker got in touch with them (they had asked him for her budget) and all of a sudden...we had no program.
My husband had left town for 12 days. This happened the day after he left and here we were at the end of April with no program. My Caseworker asked "What's your second choice?" Um...yeah...not so much a second choice. I was back to square one, spouse out of town, and things needed to move quickly. I called the school and decided to visit a program that I was scheduled to see earlier in the year - twice - but both of my visits were cancelled due to snow. Program B was very accommodating so I was able to visit within two days.
This was where I could picture RJC. Program B went to her school to observe, then came to our annual PPT (Planning and Placement Team). This agency has various programs and I could envision her being successful in two of them. They are a flexible enough program to accommodate that - and she will start off splitting her time between a work program and a more recreational program. My plan with RJC is always about being flexible so we'll see what works and what doesn't. Program B is willing to do the same.
I'm trying not to get too excited. There are huge state budget issues that are very precarious. We have to talk about a start date. RJC will be visiting soon, spending some days there with somebody from her current school. We have a really really really good possibility. I am hopeful that our state will do the right thing with the budget. I am hopeful that transportation will work out. I am hopeful that aftercare will work out since she will only be in a program for six hours per day. I am hopeful that the zillion pieces that need to fit together will come together quickly.
There is some sense of relief even if there are still issues up in the air. RJC has absolutely no comprehension of her graduation. We will soon be sharing ideas of how to best help her make this transition. Once we figure that out, we will need to share ideas of how to help me best make this transition...but that's for another post.
For now...we have a program. Phew.
Wednesday, April 17, 2013
A Good Day
Today was the middle day of school vacation. Two days behind us, two more days to go. RJC has people to hang out with most of this week, but today was a mommy day and it was a good day. A really good day. One of those good kind of days that can almost make me forget the bad days. A day to be cherished.
We met one of RJC's school friends and his mom to go bowling. They bowled two games together - for the record, she bowled a 100 and a 110 without bumpers. They fell into a nice routine, both obviously enjoying themselves. RJC likes to acknowledge every strike and spare. She "gets" bowling. Then we went to their favorite restaurant where she ordered for herself but even better...she actually ate. She didn't play with her food, she didn't waste her food. She ate her food with obvious enjoyment. No lunch is complete without ice cream so that topped off the meal and we headed home.
When we got home she wanted to bake "a yellow cake with chocolate frosting in two circle pans." So she did. She did everything independently. She got all of the ingredients out, measured everything correctly, broke the eggs without shells getting into the batter, and used the hand mixer to mix the batter. She knows that she can't lick the bowl (evil mom that I am) so she happily skipped off to play on the computer while the cake was baking. Once cooled, she helped me frost the cake then helped herself to the first piece.
A few hours later we were off to Special Olympics track practice where she did quite well. She didn't need me next to her at every given moment and participated quite nicely. When we first arrived, she went to take a walk around the track, quite independently. She really enjoys seeing
her teammates and the coaches so it was a nice way to spend an hour. She broke her personal record for the Long Jump. The weather was decent too!
Next stop - grocery store. Another favorite activity. This was a quick stop but she made sure to grab the pizza that she loves. We came home and she made herself quite comfortable while she munched her dinner.
So, it was a good day. Nothing big happened, but our good days are when the ordinary happens and it goes well. It's a lack of anxiety, limited yelling, and obvious contentment. It's enjoying the people she's with, participating in activities she likes, and (like the rest of the world) enjoying a meal or two. What's really cool is that when these days occur I really, really appreciate them. It does not escape me that other people would find a day like today to be...mundane. Just another day in the year. But us? Oh no. It was a good day. And good days are to be cherished.
We met one of RJC's school friends and his mom to go bowling. They bowled two games together - for the record, she bowled a 100 and a 110 without bumpers. They fell into a nice routine, both obviously enjoying themselves. RJC likes to acknowledge every strike and spare. She "gets" bowling. Then we went to their favorite restaurant where she ordered for herself but even better...she actually ate. She didn't play with her food, she didn't waste her food. She ate her food with obvious enjoyment. No lunch is complete without ice cream so that topped off the meal and we headed home.
When we got home she wanted to bake "a yellow cake with chocolate frosting in two circle pans." So she did. She did everything independently. She got all of the ingredients out, measured everything correctly, broke the eggs without shells getting into the batter, and used the hand mixer to mix the batter. She knows that she can't lick the bowl (evil mom that I am) so she happily skipped off to play on the computer while the cake was baking. Once cooled, she helped me frost the cake then helped herself to the first piece.
A few hours later we were off to Special Olympics track practice where she did quite well. She didn't need me next to her at every given moment and participated quite nicely. When we first arrived, she went to take a walk around the track, quite independently. She really enjoys seeing
her teammates and the coaches so it was a nice way to spend an hour. She broke her personal record for the Long Jump. The weather was decent too!
Next stop - grocery store. Another favorite activity. This was a quick stop but she made sure to grab the pizza that she loves. We came home and she made herself quite comfortable while she munched her dinner.
So, it was a good day. Nothing big happened, but our good days are when the ordinary happens and it goes well. It's a lack of anxiety, limited yelling, and obvious contentment. It's enjoying the people she's with, participating in activities she likes, and (like the rest of the world) enjoying a meal or two. What's really cool is that when these days occur I really, really appreciate them. It does not escape me that other people would find a day like today to be...mundane. Just another day in the year. But us? Oh no. It was a good day. And good days are to be cherished.
Sunday, April 14, 2013
The Challenge of Parenting a Child wtih Autism
I've been doing this parenting-a-child-with-autism thing for 20 years, 10 months, and 3 days. Not that I'm counting. Some days I do it pretty damn well. Some days I really stink at it. Many days it's a combination of both, but on my best days it's really neither. The best days are those days where we just move through without too much of a thought as to how autism will play in our plans. The challenge of parenting a child with autism is finding a way to have those best days.
Today it was the best of times, it was the worst of times. Today was one of those days where I did some things pretty well, and other things - not as well as I wished. RJC had spent her second weekend away and except for the first night where she didn't fall asleep until 2:30 AM (and apparently self-talked her way through the night) I understand it went well. We went to pick her up. So far so good. Then she got in the car and started to play on her iPad - Angry Birds. Well, let the screaming begin. No matter what I said she could not gain a modicum of self control. I am sure that being tired and anxious from the weekend did not help her escalated reaction. To be clear, I am talking about the kind of screaming that people hear through closed windows. It was that loud. I tried to talk her through it. Nope. The plan was to go grocery shopping and then for pizza and she was excited about it. It was on the calendar, and thus, it was to be. I explained that we couldn't do these things if she was screaming. Nothing I said was getting through and I finally drove home instead of to the grocery store. It was the right thing to do, though this decision escalated her behavior into pinching and self-hitting her face over and over. It was the right thing to do because it is important to never reinforce poor behavior. It was not the right thing to do in terms of showing understanding of her autism. I always have a difficult time with this balance. From my behavioral point of view, I did the correct thing. From my "mommy" point of view it was a pretty lousy choice to make. I do not believe this was a conscious choice of behavior. It wasn't like she was being a brat. This was her autism taking over. As a professional once told me, "She just doesn't have an 'off' button." So what I did pretty damn well today was to make a choice to attempt to make a connection between her behavior and what she gets to do so that once she makes this connection she can learn to control her reactions. What I did that was not so great was to resent the situation. I was annoyed that this was our moment to reconnect and it was a disaster. On the outside I was patient and understanding, speaking in a quiet tone. Gave her meds to get her through, washed her face with a cold washcloth and snuggled on the couch. On the inside I was angry that this was the first thing that happened as a reunited family. I wanted hugs and excitement and I got yelling, pinching and self-injurious behavior. I suppose to put a final good spin it, I can say that all calmed down as the meds kicked in and we were able to reinforce the good behavior with grocery shopping and pizza. It's been a quiet evening since.
The next five days will not be the kind of days I pray for - where autism does not play into our plans. It's school vacation. Can't even begin to put autism on the shelf. It's five days of juggling work and child care. It's five days of RJC asking me what her schedule will be when I really don't know. It's five days of trying to think of things that will keep her amused and busy, that won't cost a zillion dollars, that she enjoys. It's five days of never, ever forgetting that autism is in our lives. Five days that, experience tells me, will feel like fiveweeks months years.
After that, though, I will look for those days where we just move through without too much of a thought as to how autism will play in our plans. I will look forward to the lack of anxiety, the sheer joy of being with my girl. And I will work to find a way to have more of those days. Not because I deserve them - but because she does.
Today it was the best of times, it was the worst of times. Today was one of those days where I did some things pretty well, and other things - not as well as I wished. RJC had spent her second weekend away and except for the first night where she didn't fall asleep until 2:30 AM (and apparently self-talked her way through the night) I understand it went well. We went to pick her up. So far so good. Then she got in the car and started to play on her iPad - Angry Birds. Well, let the screaming begin. No matter what I said she could not gain a modicum of self control. I am sure that being tired and anxious from the weekend did not help her escalated reaction. To be clear, I am talking about the kind of screaming that people hear through closed windows. It was that loud. I tried to talk her through it. Nope. The plan was to go grocery shopping and then for pizza and she was excited about it. It was on the calendar, and thus, it was to be. I explained that we couldn't do these things if she was screaming. Nothing I said was getting through and I finally drove home instead of to the grocery store. It was the right thing to do, though this decision escalated her behavior into pinching and self-hitting her face over and over. It was the right thing to do because it is important to never reinforce poor behavior. It was not the right thing to do in terms of showing understanding of her autism. I always have a difficult time with this balance. From my behavioral point of view, I did the correct thing. From my "mommy" point of view it was a pretty lousy choice to make. I do not believe this was a conscious choice of behavior. It wasn't like she was being a brat. This was her autism taking over. As a professional once told me, "She just doesn't have an 'off' button." So what I did pretty damn well today was to make a choice to attempt to make a connection between her behavior and what she gets to do so that once she makes this connection she can learn to control her reactions. What I did that was not so great was to resent the situation. I was annoyed that this was our moment to reconnect and it was a disaster. On the outside I was patient and understanding, speaking in a quiet tone. Gave her meds to get her through, washed her face with a cold washcloth and snuggled on the couch. On the inside I was angry that this was the first thing that happened as a reunited family. I wanted hugs and excitement and I got yelling, pinching and self-injurious behavior. I suppose to put a final good spin it, I can say that all calmed down as the meds kicked in and we were able to reinforce the good behavior with grocery shopping and pizza. It's been a quiet evening since.
The next five days will not be the kind of days I pray for - where autism does not play into our plans. It's school vacation. Can't even begin to put autism on the shelf. It's five days of juggling work and child care. It's five days of RJC asking me what her schedule will be when I really don't know. It's five days of trying to think of things that will keep her amused and busy, that won't cost a zillion dollars, that she enjoys. It's five days of never, ever forgetting that autism is in our lives. Five days that, experience tells me, will feel like five
After that, though, I will look for those days where we just move through without too much of a thought as to how autism will play in our plans. I will look forward to the lack of anxiety, the sheer joy of being with my girl. And I will work to find a way to have more of those days. Not because I deserve them - but because she does.
Saturday, March 30, 2013
A Tale of Two Experiences
Today we had two vastly different experiences when we were with RJC. The first was very negative. The second, quite positive. What made the difference? Tolerance level, understanding, kindness, compassion, and common sense. All the characteristics we hope we teach our children. Apparently some people did not learn those lessons well.
Experience 1:
Went to the bagel store. It's a store we've been to before. RJC likes to get a small bottle of lemonade, then pours it into a cup with ice, puts a lid on it and drinks it with a straw. The entire bottle fits in the cup. All good. So today we expected the same thing but the guy won't give me a large cup. He said I had to pay for it. I assume he misunderstands - I just want a cup with some ice so she can pour in her lemonade. He does not misunderstand, he simply refuses. In truth, I was so shocked I didn't ask how much he wanted for a cup of ice. So I try explaining. He holds his ground. This is one heck of an expensive plastic cup I guess, and he feels a need to protect it. Or maybe he was protecing the ice. No matter what, this man is not giving up his plastic cup with ice to my obviously challenged daughter. I honestly have no idea what I said to the man. I'm sure I was polite. I'm sure I was trying to reason with him. I asked for the Manager and...sigh...he was the Manager. That plastic cup was like gold to him and he was not allowing my daughter to have it. No ice for her in a big plastic cup. True story.
Experience 2:
I am still seething from experience 1 and used some "not nice" language when explaining it to my husband. Off we go to a store where we are going to buy some riding boots and a helmet for horseback riding. Now I'm in a lousy mood and not really up for another problem, but I've told her we'd go so I feel obligated. We find boots, no problem, but the helmet is tricky. I don't know a thing about horseback riding and we want her to be safe so we have to ask for help. In steps my new favorite person. The most patient, kind, helpful person on the planet at that moment. Now helping RJC put on anything new can be a challenge, but helping her put on something that needs to be a bit snug - now that's a real challenge. One that this person is up to with good humor. RJC would start to sort of wander away or wiggle around and she would wait her out a minute then get back to doing her thing. In a fairly short time, we had a helmet that was both comfortable and safe. Amazing. Restored my faith in humankind. True story.
I know that after twenty years of parenting RJC I should be used to the ignorance that comes our way. I should be patient. I should be understanding. The truth is that I have become less patient and understanding. It ticks me off and I'm not an easily "ticked off" kind of woman. This sort of ugly behavior makes me want to scream. Do I expect accomodations that are expensive? Complicated? Would put other people out? Nope. I completely understand that there are just some things she will simply need to deal with. But really. A cup of ice? A plastic cup. With ice in it. Maybe that was why this bugged me so much. The idea that this was such a simple act that would have made her life easier but he could not bring himself to do this one simple act to make her happy. A cup of ice.
I'll call the store on Monday in hopes of speaking to the owner. What do I want? An acknowledgement that this employee was insensitive. A statement of empathy. Reassurance that the employees of this business will be educated as to how to be sensitive to an individual's special needs. That's what I want. What will I get? Stay tuned...
Experience 1:
Went to the bagel store. It's a store we've been to before. RJC likes to get a small bottle of lemonade, then pours it into a cup with ice, puts a lid on it and drinks it with a straw. The entire bottle fits in the cup. All good. So today we expected the same thing but the guy won't give me a large cup. He said I had to pay for it. I assume he misunderstands - I just want a cup with some ice so she can pour in her lemonade. He does not misunderstand, he simply refuses. In truth, I was so shocked I didn't ask how much he wanted for a cup of ice. So I try explaining. He holds his ground. This is one heck of an expensive plastic cup I guess, and he feels a need to protect it. Or maybe he was protecing the ice. No matter what, this man is not giving up his plastic cup with ice to my obviously challenged daughter. I honestly have no idea what I said to the man. I'm sure I was polite. I'm sure I was trying to reason with him. I asked for the Manager and...sigh...he was the Manager. That plastic cup was like gold to him and he was not allowing my daughter to have it. No ice for her in a big plastic cup. True story.
Experience 2:
I am still seething from experience 1 and used some "not nice" language when explaining it to my husband. Off we go to a store where we are going to buy some riding boots and a helmet for horseback riding. Now I'm in a lousy mood and not really up for another problem, but I've told her we'd go so I feel obligated. We find boots, no problem, but the helmet is tricky. I don't know a thing about horseback riding and we want her to be safe so we have to ask for help. In steps my new favorite person. The most patient, kind, helpful person on the planet at that moment. Now helping RJC put on anything new can be a challenge, but helping her put on something that needs to be a bit snug - now that's a real challenge. One that this person is up to with good humor. RJC would start to sort of wander away or wiggle around and she would wait her out a minute then get back to doing her thing. In a fairly short time, we had a helmet that was both comfortable and safe. Amazing. Restored my faith in humankind. True story.
I know that after twenty years of parenting RJC I should be used to the ignorance that comes our way. I should be patient. I should be understanding. The truth is that I have become less patient and understanding. It ticks me off and I'm not an easily "ticked off" kind of woman. This sort of ugly behavior makes me want to scream. Do I expect accomodations that are expensive? Complicated? Would put other people out? Nope. I completely understand that there are just some things she will simply need to deal with. But really. A cup of ice? A plastic cup. With ice in it. Maybe that was why this bugged me so much. The idea that this was such a simple act that would have made her life easier but he could not bring himself to do this one simple act to make her happy. A cup of ice.
I'll call the store on Monday in hopes of speaking to the owner. What do I want? An acknowledgement that this employee was insensitive. A statement of empathy. Reassurance that the employees of this business will be educated as to how to be sensitive to an individual's special needs. That's what I want. What will I get? Stay tuned...
Sunday, January 27, 2013
A Weekend Away
RJC was away once before this - for a week - and it did not go well. It was about two and a half years ago and the camp we sent her to did not take good enough care of her. Nothing horrible happened but it was a negative enough experience that she did not want to go again. I also had a difficult time getting comfortable with trying again so we didn't.
The camp RJC went to this weekend was one with which we were familiar. Her younger sister and one of our very trusted babysitters had worked there previously during the summer. We got to know quite a few of the staff and we knew other families whose children had very positive experiences. We would play around with the idea of sending her, then I'd back off. Last summer I actually tried to sign her up for a two week session, but the camp had some concerns and preferred we start with a weekend. Not to mention I was really late in sending in paperwork so there was no room anyway. A few months ago I told our most wonderful case worker that we were considering a weekend and the next thing I knew he had signed her up. Thus, a weekend away.
First and foremost, RJC had a very good weekend at camp. Maybe a blip or two along the way but nothing horrible. The staff had all positive things to say and they would welcome her back. RJC seems to have mixed feelings about it. Since she's been home she has said multiple times, "All done camp." She has also said, "It was so much fun at camp." My guess would be that while she was ok with being there she'd prefer the comfort and familiarity of home. Well, I feel like that after four days of vacation as well, so I get it. It doesn't worry me and we are planning to send her for another weekend in the spring.
The most amazing thing to me is what the weekend did for me and my hubby. The first night she was away I was not at my best. I was worried and didn't sleep well. I called the camp early in the morning and they called back about an hour later. Once I had heard she did ok (well, she was up "very early" and had packed but that doesn't sound terribly horrible) I was able to relax.
Hubby and I went to synagogue. Though I will sometimes meet him there with RJC for the last half an hour or so, it had been a long time since I went to services without having her with me. It was actually so intense for me to be there with no worries about RJC that I found myself teary at times. Really weird.
We decided to go to an afternoon movie then out for dinner. The movie we wanted to see was not around here so we ventured off to the area where we used to date. It was pretty cool. It was like we were dating again. We didn't have to find a movie with lots of physical comedy or one that was rated G or PG. We were free to make a choice based on our own preferences. What a concept! We sat in the middle of the theater with no worries about finding a seat up front so if RJC was self-talking nobody would be bothered, and we didn't need to worry about kicking the person in front of us. It was a great movie that we watched in comfort. And it felt like a date.
We went to dinner at a crowded restaurant. We did not feel antsy and nervous while waiting. Instead, we chatted with a very nice couple while waiting about half an hour to get our table. We did not check the menu for chicken fingers. We did not feel a need to rush through our meal. We took our time, we ordered some wine. And it felt like a date.
Though we sent RJC in the hopes she'd have a great experience and would gain a taste of independence, it turned out to be a great weekend for us. It took some time to settle in to the idea that we were at home with no children. The knowledge that we were on our own time schedule and that we could make our own choices for two days also took some time to settle in. Yet once we got used to being on our own it was actually relaxing. It was a time to reconnect. To have conversations that were uninterrupted. To laugh about stupid things. To stop and pay attention to the quiet. We really, really appreciated the quiet.
We picked up RJC today and things are back to normal. Our normal anyway. RJC is obsessing over the calendar for the week. Endlessly it seems. As I type I can hear Barney in the background. We took her to one of her favorite pizza places tonight. And it no longer feels like a date. But it does feel like our life. And so. It's all good.
The camp RJC went to this weekend was one with which we were familiar. Her younger sister and one of our very trusted babysitters had worked there previously during the summer. We got to know quite a few of the staff and we knew other families whose children had very positive experiences. We would play around with the idea of sending her, then I'd back off. Last summer I actually tried to sign her up for a two week session, but the camp had some concerns and preferred we start with a weekend. Not to mention I was really late in sending in paperwork so there was no room anyway. A few months ago I told our most wonderful case worker that we were considering a weekend and the next thing I knew he had signed her up. Thus, a weekend away.
First and foremost, RJC had a very good weekend at camp. Maybe a blip or two along the way but nothing horrible. The staff had all positive things to say and they would welcome her back. RJC seems to have mixed feelings about it. Since she's been home she has said multiple times, "All done camp." She has also said, "It was so much fun at camp." My guess would be that while she was ok with being there she'd prefer the comfort and familiarity of home. Well, I feel like that after four days of vacation as well, so I get it. It doesn't worry me and we are planning to send her for another weekend in the spring.
The most amazing thing to me is what the weekend did for me and my hubby. The first night she was away I was not at my best. I was worried and didn't sleep well. I called the camp early in the morning and they called back about an hour later. Once I had heard she did ok (well, she was up "very early" and had packed but that doesn't sound terribly horrible) I was able to relax.
Hubby and I went to synagogue. Though I will sometimes meet him there with RJC for the last half an hour or so, it had been a long time since I went to services without having her with me. It was actually so intense for me to be there with no worries about RJC that I found myself teary at times. Really weird.
We decided to go to an afternoon movie then out for dinner. The movie we wanted to see was not around here so we ventured off to the area where we used to date. It was pretty cool. It was like we were dating again. We didn't have to find a movie with lots of physical comedy or one that was rated G or PG. We were free to make a choice based on our own preferences. What a concept! We sat in the middle of the theater with no worries about finding a seat up front so if RJC was self-talking nobody would be bothered, and we didn't need to worry about kicking the person in front of us. It was a great movie that we watched in comfort. And it felt like a date.
We went to dinner at a crowded restaurant. We did not feel antsy and nervous while waiting. Instead, we chatted with a very nice couple while waiting about half an hour to get our table. We did not check the menu for chicken fingers. We did not feel a need to rush through our meal. We took our time, we ordered some wine. And it felt like a date.
Though we sent RJC in the hopes she'd have a great experience and would gain a taste of independence, it turned out to be a great weekend for us. It took some time to settle in to the idea that we were at home with no children. The knowledge that we were on our own time schedule and that we could make our own choices for two days also took some time to settle in. Yet once we got used to being on our own it was actually relaxing. It was a time to reconnect. To have conversations that were uninterrupted. To laugh about stupid things. To stop and pay attention to the quiet. We really, really appreciated the quiet.
We picked up RJC today and things are back to normal. Our normal anyway. RJC is obsessing over the calendar for the week. Endlessly it seems. As I type I can hear Barney in the background. We took her to one of her favorite pizza places tonight. And it no longer feels like a date. But it does feel like our life. And so. It's all good.
Saturday, January 12, 2013
Still Looking.
Still looking for that right program. Thought I should post an update since it's been a bit of time since I've updated.
I've seen quite a few adult programs over the past two months. I have found that this experience is very difficult to blog about. First, I would never want to say anything negative about a program since things I may find negative for my child, another parent will not. I would never want to be responsible for a parent not viewing a program due to my comments. Our children are all different and have different needs. Second, it's beyond emotional. I cannot even begin to explain the stress and responsibility I feel about making this decision for my girl. It equals many sleepless nights and many crazy days trying to juggle work and this hunt which has become like a full-time job. It is not fun. Just sayin'.
There are two programs that I would consider at this point. Neither is making me jump up and down and that worries me. I worry that I'm considering programs that have the "absence of bad" rather than looking for a great program. That doesn't seem like the best method when going about this. It's not fair to RJC in the end.
The big question...what to do, what to do? The good thing is that I am not in this alone. My husband is very involved and he wisely said something to the effect of "No decision is final. If something isn't good we can change it." Well, yeah. I just want to avoid the "if something isn't good" part from the start.
Part of the problem is that all of these programs look great in writing and even sound good philosophically. We have met many incredibly dedicated professionals for which I am grateful. The day-to-day reality of the programs we are seeing is what makes me question things. Down time, crowded space, clients that I cannot be able to envision RJC spending her day with, due to differences in age, time spent on being busy with activities that fill up time but do not seem to have a goal of developing a lifeskill. Did I mention down time? Ug.
I honestly don't know how to make this decision. I'm very glad we started this process early in the year. Still gives us time. What I REALLY wish was that there were tons of great programs out there and our decision would be difficult because there were so many great programs we didn't know which to choose. Sigh. In truth, this is not the problem. That is a societal issue but apparently not one that will be solved any time shortly. With all of the younger ones who will be in the adult system in the next five to ten years I sure hope it becomes a societal issue that people care about. For now, it's just my personal problem.
So...still looking.
I've seen quite a few adult programs over the past two months. I have found that this experience is very difficult to blog about. First, I would never want to say anything negative about a program since things I may find negative for my child, another parent will not. I would never want to be responsible for a parent not viewing a program due to my comments. Our children are all different and have different needs. Second, it's beyond emotional. I cannot even begin to explain the stress and responsibility I feel about making this decision for my girl. It equals many sleepless nights and many crazy days trying to juggle work and this hunt which has become like a full-time job. It is not fun. Just sayin'.
There are two programs that I would consider at this point. Neither is making me jump up and down and that worries me. I worry that I'm considering programs that have the "absence of bad" rather than looking for a great program. That doesn't seem like the best method when going about this. It's not fair to RJC in the end.
The big question...what to do, what to do? The good thing is that I am not in this alone. My husband is very involved and he wisely said something to the effect of "No decision is final. If something isn't good we can change it." Well, yeah. I just want to avoid the "if something isn't good" part from the start.
Part of the problem is that all of these programs look great in writing and even sound good philosophically. We have met many incredibly dedicated professionals for which I am grateful. The day-to-day reality of the programs we are seeing is what makes me question things. Down time, crowded space, clients that I cannot be able to envision RJC spending her day with, due to differences in age, time spent on being busy with activities that fill up time but do not seem to have a goal of developing a lifeskill. Did I mention down time? Ug.
I honestly don't know how to make this decision. I'm very glad we started this process early in the year. Still gives us time. What I REALLY wish was that there were tons of great programs out there and our decision would be difficult because there were so many great programs we didn't know which to choose. Sigh. In truth, this is not the problem. That is a societal issue but apparently not one that will be solved any time shortly. With all of the younger ones who will be in the adult system in the next five to ten years I sure hope it becomes a societal issue that people care about. For now, it's just my personal problem.
So...still looking.
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