This is not good at all. In fact, it's bad mommy behavior. Yet I can't seem to get moving - it's like I'm a deer in headlights. This is not my normal modus operandi. When it come to RJC I am very good about facing things head on, fighting (what I call) the "good fight." So why oh why is this so difficult?
I have received...let's say...more than one email from RJC's school transition person about scheduling site visits of day programs. Her Case Worker has also asked me to call and schedule a PPT meeting (Planning and Placement Team) so we can discuss options for next year. A friend has sent me contact information for somebody that I can use as a resource. Have I done any of this? That'd be a big ol' no. I think about it. I have good intentions. And I panic.
Now I am well aware that this is not useful behavior. June 2013 is going to come whether I like it or not, and the adult system is looming just eight short months away. The calendar stops for nobody.
I've spoken to parents who have children in the adult system and I am sorry to say that not one single one of them has said, "Oh no worries! There is the greatest program my son/daughter is attending. Let me give you the number!" Nope. I heard things like, "Well, we're trying a new program. The first one (or two, or three) didn't really work out." I've heard "There isn't always work to keep him/her busy." I've heard "It's a short day. The program is from 9-3." I was also told that education is not part of the adult system. Well, sure, I can ask a day program to provide an element of education if I really want to, but there are no actual licensed teachers in an adult day program and if RJC refuses to do the work then there's no obligation to find a way to motivate her to do it. After all, she's an "adult." Really? Anyone else find some...oh, I don't know...irony here?
I am not feeling warm and fuzzy about this transition.
After 17 years in the school system (she started at age 3) she is finally in a place that works for her. For the last six years I've sent her off every morning and I do not worry about her safety or her happiness. She spends the day with people I trust. I know they care about her. I know they understand how to teach her while allowing her to be who she is. I also know that I am informed of what is going on every day - both the good stuff and the not so good stuff - and I am not concerned that they are hiding anything. She comes home happy and tired because she has been stimulated and busy all day. She gets exercise and she enjoys being around everyone in her school. She has friends - not in the traditional sense of the word perhaps - but she is comfortable with her peers in her classroom. That's a big thing in the autism world.
And for some reason this all ends at the chronological age of 21. Never mind that developmentally she is not even close. Let's think about this...her favorite show is still "Barney" and her choice of books when we are at the bookstore are fairy tales. Mostly for the pictures.
Sigh. I will be making the call to the school district tomorrow to have this meeting set up, then the search for the day program will begin in earnest. Watch out though. I'm digging into storage and putting on my fighter's gloves. It's been a great six years and I haven't needed to enter the ring in a long, long time. I'm getting in the mindset, I'm hearing my theme song in my head (see my entry from 8/31/12) and I will no longer be that deer in the headlights. It's me against...whoever gets in my way.
Sunday, September 30, 2012
Tuesday, September 18, 2012
Decisions. Oy.
Decisions can be difficult. Decisions about my children can be beyond difficult. Even worse, I never know if I made the right decision. This recent Jewish holiday found me making decisions about both my children.
Child 1 decision: The Jewish High Holy Days of Rosh Hashana and Yom Kippur (the Jewish New Year and the Day of Atonement) are always very complicated for me when it comes to RJC. We love our synagogue community. RJC is accepted and welcomed when we go to services during the year and she has the opportunity to participate in services as well. These holidays, however, are a horse of a different color. There are so many people. Instead of a hundred or so we are talking multiples of a hundred. People who are not used to seeing my girl, not used to hearing my girl, well...they're just not used to my girl.
Every year I struggle with what to do. I could bring her to services. She would have the opportunity to be part of the very large community that attends during the holidays. She would see some familar faces. She would recognize some of the tunes. She would be a part of our community.
On the other hand, she would also be apart from our community. She would probably disturb others with her Barney self talk earning stares and possibly comments. She would probably be overwhelmed by the crowd, the perfume and cologne smells, the larger group of people, not being able to sit in her "regular" spot (during the holidays there are reserved seats for some and in order to sit in the front section we'd need to get there very early).
The other issue is a selfish one. If I have RJC with me the opportunity for me to get anything out of the service is just about zip, zero, zilch. As this is a service that requires concentration and contemplation, having RJC with me means my focus is on her. On her alone.
So every year when the holidays fall on a school day I send her off to school and feel guilty. Then I work it out in my head and feel ok about it. Then I get to synagogue and see my friends who made the choice to bring their kids and I feel guilty. Then I focus on the service and feel ok about it. Then I start to think about RJC and feel guilty. Well...you get the picture. Every year. So this year I made up my mind not to feel guilty. It worked. At times. Still not sure this was the right decision.
Child 2 decision: RJC's sister, NMC, just started college and happily I picked her and a friend up from school so we could spend the holiday together. I get word that a swastika was found drawn in a building at her school. Just as disturbing, there are students who consider this "free speech." So what to do? I'm not comfortable sending her back to a potentially volatile situation. On the other hand, I am well aware that this is part of the world we live in and that she is no longer sheltered at a Jewish Day School. Ug.
I spend a ton of time on the phone with the school. I read the parent's list, I read the email sent from the school. I have multiple conversations with NMC and her friend, trying to gauge their comfort level. And now...a decision to make. I think she should go back to school and that I should let the school handle the issue as they seem to have things under control from what I can tell by our conversations. I am aware that this is an important issue for her to work through with her peers as well as on a personal level. On the other hand her safety is by far the most important concern so perhaps this is not the correct decision. I think she should stay home where I know she is safe. What to do, what to do? A decision needs to be made.
I drive the girls to school. NMC walks me to the Security Office so I can have a face-to-face conversation and get some comfort level that this was the correct decision. She has things to do so she kisses me goodbye and off she goes. She seems happy to be back at school, her new home. I have a conversation with Security, then a further phone conversation with a Residential Staff. I make the decision to leave and I hope it's the right one.
This was a holiday of difficult decisions. I'm not sure I did the right thing in either situation, but I know I thought them through carefully and as objectively as possible.
Good practice for the months to come.
Child 1 decision: The Jewish High Holy Days of Rosh Hashana and Yom Kippur (the Jewish New Year and the Day of Atonement) are always very complicated for me when it comes to RJC. We love our synagogue community. RJC is accepted and welcomed when we go to services during the year and she has the opportunity to participate in services as well. These holidays, however, are a horse of a different color. There are so many people. Instead of a hundred or so we are talking multiples of a hundred. People who are not used to seeing my girl, not used to hearing my girl, well...they're just not used to my girl.
Every year I struggle with what to do. I could bring her to services. She would have the opportunity to be part of the very large community that attends during the holidays. She would see some familar faces. She would recognize some of the tunes. She would be a part of our community.
On the other hand, she would also be apart from our community. She would probably disturb others with her Barney self talk earning stares and possibly comments. She would probably be overwhelmed by the crowd, the perfume and cologne smells, the larger group of people, not being able to sit in her "regular" spot (during the holidays there are reserved seats for some and in order to sit in the front section we'd need to get there very early).
The other issue is a selfish one. If I have RJC with me the opportunity for me to get anything out of the service is just about zip, zero, zilch. As this is a service that requires concentration and contemplation, having RJC with me means my focus is on her. On her alone.
So every year when the holidays fall on a school day I send her off to school and feel guilty. Then I work it out in my head and feel ok about it. Then I get to synagogue and see my friends who made the choice to bring their kids and I feel guilty. Then I focus on the service and feel ok about it. Then I start to think about RJC and feel guilty. Well...you get the picture. Every year. So this year I made up my mind not to feel guilty. It worked. At times. Still not sure this was the right decision.
Child 2 decision: RJC's sister, NMC, just started college and happily I picked her and a friend up from school so we could spend the holiday together. I get word that a swastika was found drawn in a building at her school. Just as disturbing, there are students who consider this "free speech." So what to do? I'm not comfortable sending her back to a potentially volatile situation. On the other hand, I am well aware that this is part of the world we live in and that she is no longer sheltered at a Jewish Day School. Ug.
I spend a ton of time on the phone with the school. I read the parent's list, I read the email sent from the school. I have multiple conversations with NMC and her friend, trying to gauge their comfort level. And now...a decision to make. I think she should go back to school and that I should let the school handle the issue as they seem to have things under control from what I can tell by our conversations. I am aware that this is an important issue for her to work through with her peers as well as on a personal level. On the other hand her safety is by far the most important concern so perhaps this is not the correct decision. I think she should stay home where I know she is safe. What to do, what to do? A decision needs to be made.
I drive the girls to school. NMC walks me to the Security Office so I can have a face-to-face conversation and get some comfort level that this was the correct decision. She has things to do so she kisses me goodbye and off she goes. She seems happy to be back at school, her new home. I have a conversation with Security, then a further phone conversation with a Residential Staff. I make the decision to leave and I hope it's the right one.
This was a holiday of difficult decisions. I'm not sure I did the right thing in either situation, but I know I thought them through carefully and as objectively as possible.
Good practice for the months to come.
Saturday, September 8, 2012
Autism is not (always) poopy
I've said it so often that I've considered making it a bumper sticker or putting it on a tee shirt. In fact, in the month of August I said it on practically a daily basis. Autism is poopy. Well I'm happy to report that today was the kind of the day that reminded me - autism is not (always) poopy.
It started as a thought. The Bushnell Theater in Hartford, which is a professional theater in our area, is about to open their Broadway season with "Mary Poppins." To get things started, they had a free event today with various activities related to Mary Poppins as well as a showing of the movie (the sing-along version, complete with subtitles for the songs so the crowd could sing along). Historically, this type of event has not always gone well for us so hubby and I were weighing the pros and cons. It was one of those days where I was feeling pretty energetic so I tossed caution to the wind and off we all went.
When we arrived, RJC immediately spotted quite a few kites which got her excited! We stopped for a few minutes to watch a lady teach some dance steps. RJC wasn't interested in participating but she happily sat down and watched for a while. We moved on and could see where to get the kites so we stood in line for a while and RJC patiently waited, alternating between sitting and standing. She got her kite and went to the table to draw a picture of a flower and put her name on her kite, then excitedly went off to fly it. It was a perfect day for this - quite windy since it was just before a downpour. She was laughing and so thrilled to being flying her kite. Then came the drizzle. The sky was getting darker, the wind was getting gustier, and it was obvious that the rain was about to come down full force. We ran into the theater, RJC laughing all the way. We sat down, watched people sort of aimlessly milling about so I took RJC for a walk and discovered they were letting people in to the theater. Why not? I checked with the hubby who was willing to give it a try.
We found great seats near the door (ok, it's been 20 years, we know not to push it) and though we had to wait about half an hour for the movie to start RJC happily sat scripting relatively quietly. The movie started and she took my hand and gave me a kiss. There are no words. We sat holding hands throughout the entire movie. She loved every moment. Clapped along, made relevant comments, never once asked to leave.
Now I realize that this event was not targeting 20-year olds. In fact, I'd guess most of the kids were in the 8 and under range (with most in the "and under" range). The thing is, we couldn't do this stuff when she was 4, or 5, or 10, or 15 for that matter! It took us 20 years. The point is...we did it...and she loved it.
I started to think about everything RJC has not had to deal with. She never dealt with the social horrors of middle school or high school, the pressures of getting good grades, the concerns around college or boys. While these are usually things I mourn as losses, today I celebrated my girl just where she is and for who she is. I was teary thinking how difficult this would have been had she been the age of most of the kids who were there, and felt very proud to have had this experience today. I was teary wishing my mom was around to enjoy and share in this great victory of ours since she always participated in these activities and was with us plenty of times when we had to make a rushed exit. Mostly though, I was teary thinking how much I loved my girl and how sometimes, just sometimes...autism isn't poopy.
It started as a thought. The Bushnell Theater in Hartford, which is a professional theater in our area, is about to open their Broadway season with "Mary Poppins." To get things started, they had a free event today with various activities related to Mary Poppins as well as a showing of the movie (the sing-along version, complete with subtitles for the songs so the crowd could sing along). Historically, this type of event has not always gone well for us so hubby and I were weighing the pros and cons. It was one of those days where I was feeling pretty energetic so I tossed caution to the wind and off we all went.
When we arrived, RJC immediately spotted quite a few kites which got her excited! We stopped for a few minutes to watch a lady teach some dance steps. RJC wasn't interested in participating but she happily sat down and watched for a while. We moved on and could see where to get the kites so we stood in line for a while and RJC patiently waited, alternating between sitting and standing. She got her kite and went to the table to draw a picture of a flower and put her name on her kite, then excitedly went off to fly it. It was a perfect day for this - quite windy since it was just before a downpour. She was laughing and so thrilled to being flying her kite. Then came the drizzle. The sky was getting darker, the wind was getting gustier, and it was obvious that the rain was about to come down full force. We ran into the theater, RJC laughing all the way. We sat down, watched people sort of aimlessly milling about so I took RJC for a walk and discovered they were letting people in to the theater. Why not? I checked with the hubby who was willing to give it a try.
We found great seats near the door (ok, it's been 20 years, we know not to push it) and though we had to wait about half an hour for the movie to start RJC happily sat scripting relatively quietly. The movie started and she took my hand and gave me a kiss. There are no words. We sat holding hands throughout the entire movie. She loved every moment. Clapped along, made relevant comments, never once asked to leave.
Now I realize that this event was not targeting 20-year olds. In fact, I'd guess most of the kids were in the 8 and under range (with most in the "and under" range). The thing is, we couldn't do this stuff when she was 4, or 5, or 10, or 15 for that matter! It took us 20 years. The point is...we did it...and she loved it.
I started to think about everything RJC has not had to deal with. She never dealt with the social horrors of middle school or high school, the pressures of getting good grades, the concerns around college or boys. While these are usually things I mourn as losses, today I celebrated my girl just where she is and for who she is. I was teary thinking how difficult this would have been had she been the age of most of the kids who were there, and felt very proud to have had this experience today. I was teary wishing my mom was around to enjoy and share in this great victory of ours since she always participated in these activities and was with us plenty of times when we had to make a rushed exit. Mostly though, I was teary thinking how much I loved my girl and how sometimes, just sometimes...autism isn't poopy.
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