Making forward movement. Small forward movement, but movement nevertheless. This week I took two baby steps toward RJC's adult future.
Baby step 1: I set up a meeting with...well...everyone. Our school system, her current Outplacement school and Department of Developmental Services. Yep. It is official. I can no longer pretend to ignore the fact that she is not going to be able to stay in school and I took the plunge and made the call to get the ball rolling. I am both pleased with myself and sick to my stomach.
Baby step 2: For whatever reason, trying to get SSI for her has been a ridiculously slow process. While I was just at the point of considering who I can call to get some help, she was approved. Of course, it couldn't just be a simple process. I received a letter that she was approved but that I needed to take her to the Social Security office in Hartford. UG. Really? Smart me - I called to be sure this was a necessary step and lo and behold it was not! The rep on the phone found the form they thought I needed to complete. Thank goodness my need to avoid any potential issues with RJC pushed me to make a phone call.
So there you have it. I have made some forward movement. Reading this over it is almost pathetic that I am sharing this somewhat proudly. You'd assume as a responsible parent I'd be doing this stuff. I assumed I'd leap right into it. What I am finding is that there is a great deal of emotional stuff that goes along with my baby turning 21 and it makes me want to crawl into my bed and put the covers over my head.
Forward movement is progress. Progress is good. So, I'm sharing.
Saturday, October 20, 2012
Monday, October 8, 2012
A Community of Strangers
We are a community of strangers. We do not know one another but we can recognize one another.
This week we're vacationing at Disney World. Yesterday we had a long, hot day and though we rested for a while in the afternoon, by the time the fireworks were over it was late and RJC was done. We made our way through the crowd to the bus area where we waited for our bus to take us back to the resort. RJC is not one for standing, so she was sitting on the cement. The bus came rather quickly and the man in front of us helped her up. I thought it was a nice gesture and thanked him. Just my luck, by the time we boarded there were no seats. Let the screaming begin.
All in all it was pretty much just two long screams then she plunked herself down on the floor of the bus. The same man leaned over to me and asked "Are you ok?" I smiled, said something like, "Yeah, she's just holding on by a string" and he replied "At least she's still holding on." Again, I politely smiled. I did think it was interesting that he didn't ask me if SHE was ok, since that's the usual question, but I was tired and mostly focused on keeping RJC in check.
The ride felt endless and I caught this man's eye again. He nodded, I nodded. Then as I was looking around to see where we were and hoping we were reaching our destination, I saw his son. He was in the eight to ten year old range and was diagnosed with Down's Syndrome.
It all made sense. Of course he helped her up. It was instinctual. Of course he asked if I was ok. He'd been there. He knows that "walking on egg shell" feeling when you're just praying silently that the screams stop there and don't explode into a full blown tantrum with a bus full of people.
We are a community of strangers and we're there for each other. Even when we don't realize it.
We made it with no other issues back to the resort and when we got off the bus we said our goodnights. He went his way with his family, I went mine with RJC. He probably did not give us another thought but I sure silently thanked him on our walk back.
There is something about knowing that somebody "gets it" when you're in the middle of it. There is something comforting about our community of strangers that helps us to plow on. You don't need to have a child with specials needs to be in that community. You just need to understand and be compassionate. We need our community of strangers to make it through. So let me say now to all of you who are part of this community - thank you in advance for those times that you help me...or somebody else...get through those moments. Thank YOU for being a part of our community of strangers.
This week we're vacationing at Disney World. Yesterday we had a long, hot day and though we rested for a while in the afternoon, by the time the fireworks were over it was late and RJC was done. We made our way through the crowd to the bus area where we waited for our bus to take us back to the resort. RJC is not one for standing, so she was sitting on the cement. The bus came rather quickly and the man in front of us helped her up. I thought it was a nice gesture and thanked him. Just my luck, by the time we boarded there were no seats. Let the screaming begin.
All in all it was pretty much just two long screams then she plunked herself down on the floor of the bus. The same man leaned over to me and asked "Are you ok?" I smiled, said something like, "Yeah, she's just holding on by a string" and he replied "At least she's still holding on." Again, I politely smiled. I did think it was interesting that he didn't ask me if SHE was ok, since that's the usual question, but I was tired and mostly focused on keeping RJC in check.
The ride felt endless and I caught this man's eye again. He nodded, I nodded. Then as I was looking around to see where we were and hoping we were reaching our destination, I saw his son. He was in the eight to ten year old range and was diagnosed with Down's Syndrome.
It all made sense. Of course he helped her up. It was instinctual. Of course he asked if I was ok. He'd been there. He knows that "walking on egg shell" feeling when you're just praying silently that the screams stop there and don't explode into a full blown tantrum with a bus full of people.
We are a community of strangers and we're there for each other. Even when we don't realize it.
We made it with no other issues back to the resort and when we got off the bus we said our goodnights. He went his way with his family, I went mine with RJC. He probably did not give us another thought but I sure silently thanked him on our walk back.
There is something about knowing that somebody "gets it" when you're in the middle of it. There is something comforting about our community of strangers that helps us to plow on. You don't need to have a child with specials needs to be in that community. You just need to understand and be compassionate. We need our community of strangers to make it through. So let me say now to all of you who are part of this community - thank you in advance for those times that you help me...or somebody else...get through those moments. Thank YOU for being a part of our community of strangers.
Sunday, September 30, 2012
Like a Deer in Headlights
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.
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.
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.
Friday, August 31, 2012
Getting Ready
It so happens I heard an old song today that I never gave much thought to but it really struck home for whatever reason. Nice melody too. I think it's my new theme song as we enter the official year of transition on Tuesday. Something tells me I'm going to have my hands full trying to get the right program for my girl. I've been there before. Battle on.
http://www.lyricsmode.com/lyrics/a/atlanta_rhythm_section/do_it_or_die.html
http://www.lyricsmode.com/lyrics/a/atlanta_rhythm_section/do_it_or_die.html
Monday, August 27, 2012
Donna, and the Terrible, Horrible, No Good, Very Bad Day
The start of week three of vacation. I have been known to say that Autism is poopy. This would be an understatement today. Today I was in the ring and got knocked out. No doubt about it.
It started off fine. RJC is still a bit swollen from her wisdom teeth surgery but she is in no pain - has not even needed Motrin. I was working from home and I took a break in order to entertain her. When she gets bored, trouble follows. We went for lunch and got her nail polish changed to a beautiful bright red. She was quite happy, though doing more self-talk than usual and louder than usual.
When we came home I went back to work and she was playing on her computer. Then it started. The screaming. Not just a few screams here or there. It was turning into a scream fest where one screech was louder than the next. I went into her room to check on her and talked her down. A few minutes later it starts again. This time it sounds like an animal dying. I check in on her and she loses it. She is pinching and scratching me but even worse she is hitting her cheeks. Now this concerns me. I remind her, "No hitting!" and she takes off. She's yelling full force then throws her body into our wall and goes right through it, taking down our doorbell with her. I have lost track of how many walls she has destroyed but last time we fixed a bunch of these holes it cost us over a thousand dollars. She's in a full frenzy now and goes right to my cell phone and throws it across the room. I quickly realize the next possible target is my laptop so I take care of that immediately and put it away while keeping an eye out for anything else that may go flying. All the while she is screaming at the top of her lungs. She finally asks for a washcloth which is usually one of the ways she calms herself and I take this as a good sign. I wet the washcloth and hand it to her and she whips it at me full force. Ok, try again. This time I am wiping her face gently and she is pinching me. We are not in a good space and in truth, my heart is pounding and I am doing my own self talk, "It's not her fault. It's not her fault. It's not her fault." I go for the Ativan which she takes willingly and that seems to stop her screaming pattern since she needs to swallow. Eventually, she winds down and asks to "lie down on the couch with mommy."
I was definitely not in any mood to snuggle. I was angry. What could I do though? She was calming down and I wanted to encourage that so we went to hang out on the couch together. She put her head on my lap and I read the paper. I was still pretty angry. She was just hanging out on the couch when she started. "I'm sorry mommy." Really? I was not ready to hear this. I was angry and my hand hurt where she pinched and scratched me. But what could I do? It didn't matter how I felt. I rubbed her forehead gently. As we sat like that I could feel myself feeling so sorry for her. She just has no "off" button.
Here it is, hours later, and it still bothers me. This is where my fear of the future rears its ugly head. If she were to do this in a group home, what would happen? Would they call the police? A restraint? Would somebody lose their patience and hurt her, be it by accident or out of anger? How will she hold a steady job? Participate in a day program? These are the issues that keep me up at night. Almost every night lately, in fact.
I am older and more tired than I was just a few years ago. Yet somehow I need to make it all come together and work this out for my girl. Over this year I'll be researching options for day programs and will need to remember to focus on the staff. How do they train their staff? What do they do if a client becomes aggressive? What is the turnover rate of their staff? I'll need to talk to parents whose children are already in these programs to hear the pros and cons of their experience. I'm thinking this will be its own full-time job, but the most important one I will ever have. And now...I'm going to try to go to sleep and I have no doubt...I will fail.
It started off fine. RJC is still a bit swollen from her wisdom teeth surgery but she is in no pain - has not even needed Motrin. I was working from home and I took a break in order to entertain her. When she gets bored, trouble follows. We went for lunch and got her nail polish changed to a beautiful bright red. She was quite happy, though doing more self-talk than usual and louder than usual.
When we came home I went back to work and she was playing on her computer. Then it started. The screaming. Not just a few screams here or there. It was turning into a scream fest where one screech was louder than the next. I went into her room to check on her and talked her down. A few minutes later it starts again. This time it sounds like an animal dying. I check in on her and she loses it. She is pinching and scratching me but even worse she is hitting her cheeks. Now this concerns me. I remind her, "No hitting!" and she takes off. She's yelling full force then throws her body into our wall and goes right through it, taking down our doorbell with her. I have lost track of how many walls she has destroyed but last time we fixed a bunch of these holes it cost us over a thousand dollars. She's in a full frenzy now and goes right to my cell phone and throws it across the room. I quickly realize the next possible target is my laptop so I take care of that immediately and put it away while keeping an eye out for anything else that may go flying. All the while she is screaming at the top of her lungs. She finally asks for a washcloth which is usually one of the ways she calms herself and I take this as a good sign. I wet the washcloth and hand it to her and she whips it at me full force. Ok, try again. This time I am wiping her face gently and she is pinching me. We are not in a good space and in truth, my heart is pounding and I am doing my own self talk, "It's not her fault. It's not her fault. It's not her fault." I go for the Ativan which she takes willingly and that seems to stop her screaming pattern since she needs to swallow. Eventually, she winds down and asks to "lie down on the couch with mommy."
I was definitely not in any mood to snuggle. I was angry. What could I do though? She was calming down and I wanted to encourage that so we went to hang out on the couch together. She put her head on my lap and I read the paper. I was still pretty angry. She was just hanging out on the couch when she started. "I'm sorry mommy." Really? I was not ready to hear this. I was angry and my hand hurt where she pinched and scratched me. But what could I do? It didn't matter how I felt. I rubbed her forehead gently. As we sat like that I could feel myself feeling so sorry for her. She just has no "off" button.
Here it is, hours later, and it still bothers me. This is where my fear of the future rears its ugly head. If she were to do this in a group home, what would happen? Would they call the police? A restraint? Would somebody lose their patience and hurt her, be it by accident or out of anger? How will she hold a steady job? Participate in a day program? These are the issues that keep me up at night. Almost every night lately, in fact.
I am older and more tired than I was just a few years ago. Yet somehow I need to make it all come together and work this out for my girl. Over this year I'll be researching options for day programs and will need to remember to focus on the staff. How do they train their staff? What do they do if a client becomes aggressive? What is the turnover rate of their staff? I'll need to talk to parents whose children are already in these programs to hear the pros and cons of their experience. I'm thinking this will be its own full-time job, but the most important one I will ever have. And now...I'm going to try to go to sleep and I have no doubt...I will fail.
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