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. 

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.

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.

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.