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.
Sunday, January 27, 2013
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.
Saturday, December 8, 2012
Todayland.
Lately I've been stuck in Tomorrowland. Specifically, what will happen to RJC's world once June arrives? Where will she spend her days? Doing what and with whom? Then I get that sick stomach feeling, can't sleep, and have visions of, well, nothing good.
Today, however, was one of those days where I not only recognized RJC's growth, but felt it. I felt her making her wishes known. I felt her presence. It is not often that I manage to live in the present, especially when it comes to RJC. Today was one of those special days. It was all about living in Todayland.
It started off this morning when she announced her wish to go to synagogue. We got ready and went for the last half hour of services. She looked quite grown up in her black skirt and nice sweater. Ok, we could have done without the sneakers but they were black and didn't look all that bad! We arrived and she immediately went into the room with the toys and played a bit then we went and joined my hubby in the service. She did a good job at being (relatively) quiet. She sang along. She was content. There was lunch at synagogue and she waited patiently while others helped themselves. When it was her turn she was quite independent in getting herself lunch. She put her own cream cheese on her bagel and helped herself to some macaroni and cheese. She used the correct utensil to eat, and used her napkin. She threw out her garbage after lunch and sat with me while I chatted with some friends.
Later in the day we went shopping. Not one store, but two. As this is the holiday season, both stores were quite crowded and we were not getting anything for her. In Yesterdayland, this was risky business. In Todayland, we walked in together with her arm wrapped in mine. She saw some toys that caught her interest for a bit but didn't obsess over them. She played with the CD player that customers can hear music on before they decide if they want to buy. Again, it wasn't obsessive. She listened for a bit then moved on with me.
We went to dinner. She ordered for herself (ok, so I needed to do some translating). She ate a good deal of her meal instead of playing with it. There was no "Barney" talk (a victory indeed)! My hubby and I chatted through dinner. RJC looked like any other young gal in the restaurant. Maybe even better behaved since she wasn't texting on a cell phone! Lol!
When we came home she went right to her computer. When it was time to light the Chanukah candles we called her to the kitchen. We were skyping with her sister which she found interesting (if not a bit confusing) and she made an attempt to sing the prayers along with us. She seemed to have an understanding that lighting the menorah was special and signficant. She didn't make a move to blow out the candles.
A little later she showed off her most recent self-help skill and washed her own hair. Since then she has been playing quietly on the computer and every once in a while I can hear her singing along.
There is something to be said for living in Todayland.
Today, however, was one of those days where I not only recognized RJC's growth, but felt it. I felt her making her wishes known. I felt her presence. It is not often that I manage to live in the present, especially when it comes to RJC. Today was one of those special days. It was all about living in Todayland.
It started off this morning when she announced her wish to go to synagogue. We got ready and went for the last half hour of services. She looked quite grown up in her black skirt and nice sweater. Ok, we could have done without the sneakers but they were black and didn't look all that bad! We arrived and she immediately went into the room with the toys and played a bit then we went and joined my hubby in the service. She did a good job at being (relatively) quiet. She sang along. She was content. There was lunch at synagogue and she waited patiently while others helped themselves. When it was her turn she was quite independent in getting herself lunch. She put her own cream cheese on her bagel and helped herself to some macaroni and cheese. She used the correct utensil to eat, and used her napkin. She threw out her garbage after lunch and sat with me while I chatted with some friends.
Later in the day we went shopping. Not one store, but two. As this is the holiday season, both stores were quite crowded and we were not getting anything for her. In Yesterdayland, this was risky business. In Todayland, we walked in together with her arm wrapped in mine. She saw some toys that caught her interest for a bit but didn't obsess over them. She played with the CD player that customers can hear music on before they decide if they want to buy. Again, it wasn't obsessive. She listened for a bit then moved on with me.
We went to dinner. She ordered for herself (ok, so I needed to do some translating). She ate a good deal of her meal instead of playing with it. There was no "Barney" talk (a victory indeed)! My hubby and I chatted through dinner. RJC looked like any other young gal in the restaurant. Maybe even better behaved since she wasn't texting on a cell phone! Lol!
When we came home she went right to her computer. When it was time to light the Chanukah candles we called her to the kitchen. We were skyping with her sister which she found interesting (if not a bit confusing) and she made an attempt to sing the prayers along with us. She seemed to have an understanding that lighting the menorah was special and signficant. She didn't make a move to blow out the candles.
A little later she showed off her most recent self-help skill and washed her own hair. Since then she has been playing quietly on the computer and every once in a while I can hear her singing along.
There is something to be said for living in Todayland.
Wednesday, November 21, 2012
Another Day, Another Program Visit
I went to visit another potential program for RJC a few days ago and am still trying to process all that I saw. This was a large program with quite a few facets to it - a paid work program as well as a day program that is more recreationally based. I had a meeting with the Directors of both programs first. I've come to the conclusion that it's difficult to hear their words and then reconcile to what one actually sees in action. For sure, whatever program RJC ends up in is one that I will have visited more than once. It's just that overwhelming.
This particular program was going through a "transition" (I believe this is a code word for change in personnel who has a different philosophy than the previous person in this positition). I did have a good feeling about both of the Directors I spoke with - they seemed committed and caring - so that was a bonus.
Walking around the program I had feelings all over the spectrum (pun definitely intended. Get it?) On the one hand I saw staff who were engaged in whatever activity was going on and they were friendly and open to having conversation. I did not see any out of control behaviors by staff or clients and the place was clean. On the other hand, I did see clients who seemed less than enthused. I also saw quite a few older clients and not many of them were engaged in social activities. Some were quite involved in solitary activities. I did not see any staff trying to engage those who were choosing not to participate. How do I gauge the quality of a program such as this? Trying to picture RJC there...I wasn't feeling it. Yet I could not put my finger on the problem.
There was one moment where I saw something that I thought could be done differently and started to offer my opinion...with some detail and passion. Oops. It was not exactly negatively received but I can't say they said, "Wow, good point! We should relook at this issue." Hmmm...maybe this was part of the problem for me. I'd like to think that any program RJC goes to is one that is open to suggestions.
All I know is...I didn't run out of there pulling out my hair, nor did I leave there feeling reassured and thinking that I found the place for RJC. This is going to be an ongoing process I know, yet I keep hoping that something wonderful is just beyond the door I'm about to walk through. So far...not quite the case.
More visits to come. This is becoming my other full-time job. Another day, another program visit.
This particular program was going through a "transition" (I believe this is a code word for change in personnel who has a different philosophy than the previous person in this positition). I did have a good feeling about both of the Directors I spoke with - they seemed committed and caring - so that was a bonus.
Walking around the program I had feelings all over the spectrum (pun definitely intended. Get it?) On the one hand I saw staff who were engaged in whatever activity was going on and they were friendly and open to having conversation. I did not see any out of control behaviors by staff or clients and the place was clean. On the other hand, I did see clients who seemed less than enthused. I also saw quite a few older clients and not many of them were engaged in social activities. Some were quite involved in solitary activities. I did not see any staff trying to engage those who were choosing not to participate. How do I gauge the quality of a program such as this? Trying to picture RJC there...I wasn't feeling it. Yet I could not put my finger on the problem.
There was one moment where I saw something that I thought could be done differently and started to offer my opinion...with some detail and passion. Oops. It was not exactly negatively received but I can't say they said, "Wow, good point! We should relook at this issue." Hmmm...maybe this was part of the problem for me. I'd like to think that any program RJC goes to is one that is open to suggestions.
All I know is...I didn't run out of there pulling out my hair, nor did I leave there feeling reassured and thinking that I found the place for RJC. This is going to be an ongoing process I know, yet I keep hoping that something wonderful is just beyond the door I'm about to walk through. So far...not quite the case.
More visits to come. This is becoming my other full-time job. Another day, another program visit.
Thursday, November 8, 2012
Baby Step
I did it!
For those of you who know me well, one of my biggest issues with RJC is feeling comfortable when she is...well...not with me. I am well aware that this is a problem, especially as she is becoming an adult and independence is a key component to adulthood. Even if that is independence is limited, it should be encouraged. See? I know this. The problem is in the execution.
Today however was a baby step forward. I was talking to RJC's caseworker - one of my favorite people in the world - and mentioned that I'd like to sign her up for a "Weekend in the Country." It's a program through a camp I am very familiar with since my younger one worked there one summer. Well he was right on that and within half an hour she was signed up. End of January. Yikes.
Nope I haven't mentioned this to RJC and won't until a few days before. No sense in both of our anxiety levels rising. Besides that, on a selfish note I'd rather avoid the constant scripting and obsessing that will come along with hearing the news of her exciting weekend.
This is tough stuff. I have so much hope that it is a successful weekend and she enjoys herself enough to want to go back. I hope she doesn't feel abandoned but rather feels like it's a big deal to be on her own. It's a step toward independence for RJC and a leap of faith and trust for me. Baby step indeed...but it's a step.
For those of you who know me well, one of my biggest issues with RJC is feeling comfortable when she is...well...not with me. I am well aware that this is a problem, especially as she is becoming an adult and independence is a key component to adulthood. Even if that is independence is limited, it should be encouraged. See? I know this. The problem is in the execution.
Today however was a baby step forward. I was talking to RJC's caseworker - one of my favorite people in the world - and mentioned that I'd like to sign her up for a "Weekend in the Country." It's a program through a camp I am very familiar with since my younger one worked there one summer. Well he was right on that and within half an hour she was signed up. End of January. Yikes.
Nope I haven't mentioned this to RJC and won't until a few days before. No sense in both of our anxiety levels rising. Besides that, on a selfish note I'd rather avoid the constant scripting and obsessing that will come along with hearing the news of her exciting weekend.
This is tough stuff. I have so much hope that it is a successful weekend and she enjoys herself enough to want to go back. I hope she doesn't feel abandoned but rather feels like it's a big deal to be on her own. It's a step toward independence for RJC and a leap of faith and trust for me. Baby step indeed...but it's a step.
Wednesday, November 7, 2012
First Visit Thoughts
I was feeling like an emotional mess today and found myself wondering why since I tend to be pretty level headed and low maintenance. Honest! Lol. Really? I actually had to think about why I was so emotional today? Not for long. Today was my first visit to a possible program for RJC. Pretty sure this would be the reason for the edgy emotions. Until today, though, I did not realize how my personal issues would be magnified through this process.
It is incredibly difficult for me to recognize RJC as an adult. As strange as this sounds I see her as a perpetual child as there is just nothing "adult" about my girl. She is all about Barney the dinosaur, teddy bears, and Disney World. She is twenty years old and has no interest (or knowledge of) boys, driving, texting, Facebook, etc. We are still paying for babysitters because she is not safe alone. Checking out these adult programs is uncomfortable for me because I feel like I am thrusting a defenseless child into an environment that does not fit her, yet because of an arbitrary number (her age) I have no choice.
The other issue is that I know what I want for her but it is not necessarily what she would choose for herself. Yikes. First and foremost, I want her to be safe. I also want her to have peers, to be with people she likes, to be exposed to fun and different activities, and to have opportunities to use her brain and do some thinking. Here's the rub. She would be perfectly content in a workshop environment where she goes in, sits and does the same thing day after day, week after week, month after month (you get the point) and she does not need to necessarily engage in any social interaction. Honestly! She'd be perfectly content! I just can't let that happen. It is my personal and deep belief that she needs to be a social being...to some extent...whether or not it is her preference. She often does like to be with people, even if she does not seek out company or initiate contact. It's just not a strong perference or need. I feel like we (the collective "we" in this case being our family members, her teachers, various professionals, and family friends) have worked so hard and for so many years to get her to understand how to function as part of a group and how to enjoy some social time that I'm not willing to throw it away. So ideally, she will have a program that combines the two. Maybe not in one day. Maybe she'll need to have a workshop setting and a different, more social setting. But I just can't let go of having her make human connections. The struggle of course is...am I putting my values on her? Sigh. I just do not know.
On the positive side, when I went to visit this program today I observed clients getting along, focused on what they were doing, and seemingly happy. They were talking to each other and nobody was sitting around doing nothing. It so happened I also recognized two of the clients and they would be fine "peers" for RJC to be around. The woman who was giving us (I went with school personnel) the tour and answering our questions was very forthcoming and direct. Traits that I like. She did not stumble around for conversation, she was calm and organized. More traits that I like.
It probably got a bit awkward when I ventured into the sensitive area that concerns me. That is, I have an adult daughter who has no interest in boys, no concept of "stranger danger", no recognition of safety issues. How did the program handle these sort of things? (Translate - please keep my child physically safe and do not allow anyone to molest or abuse her). Her response was reassuring. She talked about how the setting was seen as a professional environment and there are clear behavioral expectations. She and the staff are very aware of these issues and are aware that there were clients who could be interested in "negotiating relationships" (and yes, I thought that was a funny term but at least now I know the buzz words to use when bringing up this rather sensitive topic) and basically said the adults were on top of it. Ok. I felt like it was not lip service. She seemed sincere. More importantly, I was looking for any sign of a problem in this area while I was there and I must say I thought all interactions were appropriate. When I return - did I mention that is no way one visit will do it for me?- I will be looking carefully for any signs of a potential issue in this area. It is my nightmare area.
So it's only visit one and I feel like this program has a lot of what we are looking for in a program. I am not sure it would fulfill all of my hopes and dreams for my girl and I'm thinking I need to look more and see if this can become a component of a program for her. It is also not a workshop setting, which is still what I think RJC would like (ok, I know she would) and it would be unfair to choose a program based on what I WISH she would like. Sigh. It is very overwhelming.
Oh. And there is that annoying issue of the times of the program. Seriously...it's 5 1/2 hours per day. 9 am - 2:30 pm. Does anybody in the state of CT honestly believe that our most vulnerable and needy population only needs to have services available for 5 1/2 hours per day? Especially when they are adults. Most adults work 8 or 8 1/2 hour days. Why are our adults deprived of the opportunity to be busy for a full day? There are of course, other issues, like transportation. But I digress.
Today was an interesting day and a good first step. What I learned is that I need to get past the emotion of all of this and be able to make some objective decisions. "Objective" is probably not my best character trait when it comes to either of my children. This will be a challenge.
First visit thoughts shared. Feedback welcomed.
It is incredibly difficult for me to recognize RJC as an adult. As strange as this sounds I see her as a perpetual child as there is just nothing "adult" about my girl. She is all about Barney the dinosaur, teddy bears, and Disney World. She is twenty years old and has no interest (or knowledge of) boys, driving, texting, Facebook, etc. We are still paying for babysitters because she is not safe alone. Checking out these adult programs is uncomfortable for me because I feel like I am thrusting a defenseless child into an environment that does not fit her, yet because of an arbitrary number (her age) I have no choice.
The other issue is that I know what I want for her but it is not necessarily what she would choose for herself. Yikes. First and foremost, I want her to be safe. I also want her to have peers, to be with people she likes, to be exposed to fun and different activities, and to have opportunities to use her brain and do some thinking. Here's the rub. She would be perfectly content in a workshop environment where she goes in, sits and does the same thing day after day, week after week, month after month (you get the point) and she does not need to necessarily engage in any social interaction. Honestly! She'd be perfectly content! I just can't let that happen. It is my personal and deep belief that she needs to be a social being...to some extent...whether or not it is her preference. She often does like to be with people, even if she does not seek out company or initiate contact. It's just not a strong perference or need. I feel like we (the collective "we" in this case being our family members, her teachers, various professionals, and family friends) have worked so hard and for so many years to get her to understand how to function as part of a group and how to enjoy some social time that I'm not willing to throw it away. So ideally, she will have a program that combines the two. Maybe not in one day. Maybe she'll need to have a workshop setting and a different, more social setting. But I just can't let go of having her make human connections. The struggle of course is...am I putting my values on her? Sigh. I just do not know.
On the positive side, when I went to visit this program today I observed clients getting along, focused on what they were doing, and seemingly happy. They were talking to each other and nobody was sitting around doing nothing. It so happened I also recognized two of the clients and they would be fine "peers" for RJC to be around. The woman who was giving us (I went with school personnel) the tour and answering our questions was very forthcoming and direct. Traits that I like. She did not stumble around for conversation, she was calm and organized. More traits that I like.
It probably got a bit awkward when I ventured into the sensitive area that concerns me. That is, I have an adult daughter who has no interest in boys, no concept of "stranger danger", no recognition of safety issues. How did the program handle these sort of things? (Translate - please keep my child physically safe and do not allow anyone to molest or abuse her). Her response was reassuring. She talked about how the setting was seen as a professional environment and there are clear behavioral expectations. She and the staff are very aware of these issues and are aware that there were clients who could be interested in "negotiating relationships" (and yes, I thought that was a funny term but at least now I know the buzz words to use when bringing up this rather sensitive topic) and basically said the adults were on top of it. Ok. I felt like it was not lip service. She seemed sincere. More importantly, I was looking for any sign of a problem in this area while I was there and I must say I thought all interactions were appropriate. When I return - did I mention that is no way one visit will do it for me?- I will be looking carefully for any signs of a potential issue in this area. It is my nightmare area.
So it's only visit one and I feel like this program has a lot of what we are looking for in a program. I am not sure it would fulfill all of my hopes and dreams for my girl and I'm thinking I need to look more and see if this can become a component of a program for her. It is also not a workshop setting, which is still what I think RJC would like (ok, I know she would) and it would be unfair to choose a program based on what I WISH she would like. Sigh. It is very overwhelming.
Oh. And there is that annoying issue of the times of the program. Seriously...it's 5 1/2 hours per day. 9 am - 2:30 pm. Does anybody in the state of CT honestly believe that our most vulnerable and needy population only needs to have services available for 5 1/2 hours per day? Especially when they are adults. Most adults work 8 or 8 1/2 hour days. Why are our adults deprived of the opportunity to be busy for a full day? There are of course, other issues, like transportation. But I digress.
Today was an interesting day and a good first step. What I learned is that I need to get past the emotion of all of this and be able to make some objective decisions. "Objective" is probably not my best character trait when it comes to either of my children. This will be a challenge.
First visit thoughts shared. Feedback welcomed.
Thursday, November 1, 2012
And So it Begins...For Real
We had our first transition meeting. It was...not inspiring. I left feeling a bit on the defeated side while oddly pumped up to change the world. Yes I am aware that changing the world is not going to happen, but this type of meeting just gets me in that mind set. It also made me teary. Literally. I hate when that happens.
Basically, what I found out at this meeting was what I had already heard from other people who have children in the adult system (but was hoping I had misunderstood). At this time, RJC lives at home and we are planning for that to continue, so we are looking for an adult program that replaces her current school program. She currently has programming for about ten hours per day. Adult programs are about six hours per day. A bus transports her to school. Transportation may or may not be provided, depending on (mostly) her budget. There is no educational component and there is nothing that she is "required" to do as she is seen as an adult who can make her own decisions. In other words, if she refuses to participate in work or whatever activity she has scheduled, she does not "have to" participate. Once she turns twenty-one the programs are set up for her as though she is chronologically twenty-one years old (with a few supports) and not developmentally a seven year old (or a two year old, or a twelve year old, depending on the situation). She currently receives speech therapy. Speech therapy is not generally offered at an adult program (nor is Occupation Therapy or Physical Therapy). There is currently a Board Certified Behavior Analyst who works with RJC. We probably will not find a program that will have a BCBA. In fact, from what I am hearing, the whole behavioral issue is going to be a big question mark. One of those things that "varies from program to program."
As to my questions about how these programs are overseen and by whom, how staff are trained and the minimum requirements for them to be hired, how the State of Ct decides to fund a program etc...those are questions I need to ask RJC's caseworker and the various programs when I visit.
I don't think I'm asking for too much when I think about what I want for RJC. I want her to be safe, to be happy, to be surrounded by people who understand and appreciate her. I want her to be able to spend her time at work being challenged to her potential and using all of the skills we spent twenty one years developing (along with many, many professionals who went above and beyond to help her). I want her to look forward to going to her program each day the way she looks forward to going to school. I want her to have leisure time with peers her own age and an opportunity to try new things and go new places.
So, what now? Well, I need to get answers to some very important questions (see paragraph 3). I need to start looking at programs and figuring out what will work for her. I need to figure out how to sew together a few programs together, if necessary, to be sure all of her needs are met. Most painful to me, I believe I need to get some politicians on board - they need to understand the disconnect between school age years and adult programs and then they need to help fix that disconnect.
We are on our way. It's only the start of November and I have about eight more months to get this all figured out for RJC. Eight months. Less than a year. Yup. I see another sleepless night coming. And so it begins...for real.
Basically, what I found out at this meeting was what I had already heard from other people who have children in the adult system (but was hoping I had misunderstood). At this time, RJC lives at home and we are planning for that to continue, so we are looking for an adult program that replaces her current school program. She currently has programming for about ten hours per day. Adult programs are about six hours per day. A bus transports her to school. Transportation may or may not be provided, depending on (mostly) her budget. There is no educational component and there is nothing that she is "required" to do as she is seen as an adult who can make her own decisions. In other words, if she refuses to participate in work or whatever activity she has scheduled, she does not "have to" participate. Once she turns twenty-one the programs are set up for her as though she is chronologically twenty-one years old (with a few supports) and not developmentally a seven year old (or a two year old, or a twelve year old, depending on the situation). She currently receives speech therapy. Speech therapy is not generally offered at an adult program (nor is Occupation Therapy or Physical Therapy). There is currently a Board Certified Behavior Analyst who works with RJC. We probably will not find a program that will have a BCBA. In fact, from what I am hearing, the whole behavioral issue is going to be a big question mark. One of those things that "varies from program to program."
As to my questions about how these programs are overseen and by whom, how staff are trained and the minimum requirements for them to be hired, how the State of Ct decides to fund a program etc...those are questions I need to ask RJC's caseworker and the various programs when I visit.
I don't think I'm asking for too much when I think about what I want for RJC. I want her to be safe, to be happy, to be surrounded by people who understand and appreciate her. I want her to be able to spend her time at work being challenged to her potential and using all of the skills we spent twenty one years developing (along with many, many professionals who went above and beyond to help her). I want her to look forward to going to her program each day the way she looks forward to going to school. I want her to have leisure time with peers her own age and an opportunity to try new things and go new places.
So, what now? Well, I need to get answers to some very important questions (see paragraph 3). I need to start looking at programs and figuring out what will work for her. I need to figure out how to sew together a few programs together, if necessary, to be sure all of her needs are met. Most painful to me, I believe I need to get some politicians on board - they need to understand the disconnect between school age years and adult programs and then they need to help fix that disconnect.
We are on our way. It's only the start of November and I have about eight more months to get this all figured out for RJC. Eight months. Less than a year. Yup. I see another sleepless night coming. And so it begins...for real.
Subscribe to:
Posts (Atom)