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.
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.
Saturday, August 25, 2012
Bye Bye Wisdom Teeth
The night before (preparation): RJC was not allowed to eat after midnight, and could not have anything to drink after 3 am. We had a very late dinner and kept her up until 10:30 pm in the hopes that she would sleep through the night. Once she went to sleep we poured out all of the pitchers of water and the orange juice. We hid the bags of popcorn as well as the straws (it's a big no-no to use straws after this surgery). I went to bed at midnight and set my alarm to 3 am so that I would be awake if she happens to get up and want something to drink. I couldn't quite figure out how I'd stop her but the loose plan in my head was to toss her in the car and drive around for three hours if necessary. Luckily, she slept quite well and as soon as she woke up we told her we were leaving - and we did - pajamas and all. She grabbed her favorite bear (Buddy), I gave her Ativan to help her relax and we were off to the hospital.
The arrival: We arrived and went to the assigned room where we found other families who had woken up at a ridiculously early hour to get their kids to the hospital. RJC was well behaved while we waited for our intake. Within half an hour or so we were called over to do the admission paperwork. We answered the same zillion questions we had answered previously but in truth, it felt good to know they triple and quadruple check things like allergic reactions and illnesses. Once finished, I requested a DVD player which was brought up within minutes. I also made sure there were clear notes about how things were supposed to go and was reassured that everything was in place.
Preop: We were called to follow a lady to the preop area. She brought us to our curtained space and was very helpful in setting up RJC to be able to continue watching her DVDs. So far, so good. RJC was happy and quiet. Hooray for Ativan. It didn't knock her out but it definitely took the edge off. We were there for quite a while, watching this cute little kid play on the floor and observing the hospital staff deal with a younger teen who was clearly telling them that she was not going to take the medication or have her surgery. I felt for her. The staff did a great job though, and eventually their patience led their patient to cooperating (Watching this interaction was really a large part of my morning). The dental surgeon came by to reassure us that this was very routine. Then came the important guy - the anesthesiologist.
Knocking her out: The anesthesiologist was young, maybe too young for my comfort level. I explained firmly my concerns and wanted to be sure there was a plan for how he was going to knock her out. We talked for quite a while about the "dart" (the shot that would only takes minutes to get her in a state where he could anesthetize her) and he was honest - it was "not pretty" and he didn't like using it but he understood that there were times that this was the only way. I was pleased that though this was not his choice of method, (especially having seen it used on RJC before - though that time it was not planned and was done in sheer desperation) he had a clear understanding that in some cases this was truly the only way to do so safely. I asked if there was a private room to move RJC where this could be done and they found one immediately. Again, they set her up with her DVD player and the plan was that he would sneak in, jab her, and walk out. Yup...that was the plan. The problem with the plan was twofold. First, RJC is hypersensitive to her surroundings and immediately felt that something was up. Second, it was a pretty small room and there were four or five people involved. It didn't go as planned. There was alot of screaming and I got out of the way quickly since I really did not want to be the one who got the shot. RJC slapped him pretty darn hard - the sound was seriously loud. One guy lost his badge which was later found on RJC's bed. She yanked it right off of his neck. In the end, the shot was given and within minutes she was looking at her hands funny and slurring her words. I really, really did not like this. It's very scary to see your child this way. They asked me to wear the hairnet and gown and go with her into the OR so she would feel less anxious with me there. Once they started the mask, I left...a little teary and feeling really bad about my part in this whole ordeal. Yes, in my head I knew this was best and was in fact, the only way. My heart told me different.
Postop: We went to the waiting room and the coolest thing ever - they gave us a number assigned to RJC so we could keep track of her progress. There are different colors shown on a screen by her name that allowed us to know when she was in the OR and when she was moved to the Recovery Room. It was not long at all before the surgeon came out to tell us he was done, gave us some instructions, asked if we had any questions, then suggested we head out quickly to the Recovery Room since she was waking up.
I had spoken to the anesthesiologist about my concerns in recovery. She would not tolerate the gauze in her mouth so the bleeding had to be under control and the gauze out before they started to wake her up. Previous experience in watching RJC coming out of anesthesia was that she became scared by the needles and machines and would stand on the stretcher completely freaked out. It was incredibly dangerous as then a bunch of staff would wrestle her down, putting her (and themselves) at risk for injury. We explained that it'd be best for all of the bells and whistles to be off of her before she noticed. He gave her some intravenous Ativan and they did an amazing job at hiding her IV under a big bandage so she didn't notice the needle. They also had some of the monitors on her back so she couldn't see them. Watching her come out of the anesthesia was creepy. Her words were slurred and she could not see well enough to maneuver her DVD player nor could she control her hand. Without getting terribly graphic, the anesthesia also made her sick to her stomach and there was still bleeding going on so...yeah.
The anesthesiologist came back and checked on her a few times. He was excellent at reassuring us that she was fine and we had a conversation about the meds for her aftercare. He told us we could stay until we were comfortable taking her home. One of the nurses did attempt to prod us into leaving but we were having none of it. We were staying until she was able to speak clearly and maneuver her DVD. At one point she said, "Give a hug" very quietly. But I heard her. I leaned over and we were wrapped together for quite a while. I don't know who needed that more - me or her. She fell asleep again and when she woke up she seemed more alert so we decided we'd bring her home.
Home: I won't go into the details of the home trip. Suffice to say, still sick to her stomach and not really strong enough to walk up the steps on her own. Not fun. We brought her straight to her room and she drifted off holding my arm. I was so tired but just could not sleep. Instead, I did a bit of texting (a great feat since I had one arm tied up) and watched her breathe. We were diligent in giving her the pain medication as well as the anti-swelling med. She was not intersted in food but did have some water. Eventually, she fell asleep for the night - with me in her bed. It wasn't an good night's sleep for me.
Day one of recovery: A disasterous morning. It started when she found out she could not have popcorn. For ten days. From there it was all downhill. Screaming and rubbing her arms and the worst part - she slapped her face. Ug. We finally got desperate and thought if we could get her outside for a while she'd be distracted, so we decided to go to ride the trolleys. We were just about there when it became obvious that she was still agitated so we turned around and went back home for Ativan. Then we were off the trolleys again. It was probably a better idea than staying home but it was definitely not relaxing. She was scripting like crazy. There was one real highlight of the day though. It was obvious that she was not in much pain! She was eating (pancakes - no syrup) and mac and cheese. I decided to change from the heavy duty pain med to Motrin and see if that would still keep the pain in check and as far as I could tell, it did. She has never complained in fact, and as the day went on she became more settled on this idea of no popcorn. We went over the calendar a zillion times which was probably helpful as well. In truth we are dealing with two issues. Not only the postop week coming up but the fact that she still does not have school. Dealing with this long unstructured time combined with this wisdom teeth ordeal has really added to her overall stress...and mine.
So here we are, the end of the first day postop. She seems to be much more settled, though very tired. In fact, at 8:30 pm she asked to go to sleep which is unheard of! She's a bit swollen still and is very bothered by the feel of the area by her teeth (well, more technically, by the holes where her teeth used to be) but she is asking to go miniature golfing tomorrow and we will accomodate her. For me, these two days have been exhausting. The worry alone about all of the things that could go wrong is exhausting. The preplanning was well worth the tons of phone calls and had that not been done, I cannot even imagine how we would have done this. All is all, it could have been a much worse experience. With that, I am looking toward my own bed. A good night's sleep would be helpful to my mental health. I'm quite sure.
The arrival: We arrived and went to the assigned room where we found other families who had woken up at a ridiculously early hour to get their kids to the hospital. RJC was well behaved while we waited for our intake. Within half an hour or so we were called over to do the admission paperwork. We answered the same zillion questions we had answered previously but in truth, it felt good to know they triple and quadruple check things like allergic reactions and illnesses. Once finished, I requested a DVD player which was brought up within minutes. I also made sure there were clear notes about how things were supposed to go and was reassured that everything was in place.
Preop: We were called to follow a lady to the preop area. She brought us to our curtained space and was very helpful in setting up RJC to be able to continue watching her DVDs. So far, so good. RJC was happy and quiet. Hooray for Ativan. It didn't knock her out but it definitely took the edge off. We were there for quite a while, watching this cute little kid play on the floor and observing the hospital staff deal with a younger teen who was clearly telling them that she was not going to take the medication or have her surgery. I felt for her. The staff did a great job though, and eventually their patience led their patient to cooperating (Watching this interaction was really a large part of my morning). The dental surgeon came by to reassure us that this was very routine. Then came the important guy - the anesthesiologist.
Knocking her out: The anesthesiologist was young, maybe too young for my comfort level. I explained firmly my concerns and wanted to be sure there was a plan for how he was going to knock her out. We talked for quite a while about the "dart" (the shot that would only takes minutes to get her in a state where he could anesthetize her) and he was honest - it was "not pretty" and he didn't like using it but he understood that there were times that this was the only way. I was pleased that though this was not his choice of method, (especially having seen it used on RJC before - though that time it was not planned and was done in sheer desperation) he had a clear understanding that in some cases this was truly the only way to do so safely. I asked if there was a private room to move RJC where this could be done and they found one immediately. Again, they set her up with her DVD player and the plan was that he would sneak in, jab her, and walk out. Yup...that was the plan. The problem with the plan was twofold. First, RJC is hypersensitive to her surroundings and immediately felt that something was up. Second, it was a pretty small room and there were four or five people involved. It didn't go as planned. There was alot of screaming and I got out of the way quickly since I really did not want to be the one who got the shot. RJC slapped him pretty darn hard - the sound was seriously loud. One guy lost his badge which was later found on RJC's bed. She yanked it right off of his neck. In the end, the shot was given and within minutes she was looking at her hands funny and slurring her words. I really, really did not like this. It's very scary to see your child this way. They asked me to wear the hairnet and gown and go with her into the OR so she would feel less anxious with me there. Once they started the mask, I left...a little teary and feeling really bad about my part in this whole ordeal. Yes, in my head I knew this was best and was in fact, the only way. My heart told me different.
Postop: We went to the waiting room and the coolest thing ever - they gave us a number assigned to RJC so we could keep track of her progress. There are different colors shown on a screen by her name that allowed us to know when she was in the OR and when she was moved to the Recovery Room. It was not long at all before the surgeon came out to tell us he was done, gave us some instructions, asked if we had any questions, then suggested we head out quickly to the Recovery Room since she was waking up.
I had spoken to the anesthesiologist about my concerns in recovery. She would not tolerate the gauze in her mouth so the bleeding had to be under control and the gauze out before they started to wake her up. Previous experience in watching RJC coming out of anesthesia was that she became scared by the needles and machines and would stand on the stretcher completely freaked out. It was incredibly dangerous as then a bunch of staff would wrestle her down, putting her (and themselves) at risk for injury. We explained that it'd be best for all of the bells and whistles to be off of her before she noticed. He gave her some intravenous Ativan and they did an amazing job at hiding her IV under a big bandage so she didn't notice the needle. They also had some of the monitors on her back so she couldn't see them. Watching her come out of the anesthesia was creepy. Her words were slurred and she could not see well enough to maneuver her DVD player nor could she control her hand. Without getting terribly graphic, the anesthesia also made her sick to her stomach and there was still bleeding going on so...yeah.
The anesthesiologist came back and checked on her a few times. He was excellent at reassuring us that she was fine and we had a conversation about the meds for her aftercare. He told us we could stay until we were comfortable taking her home. One of the nurses did attempt to prod us into leaving but we were having none of it. We were staying until she was able to speak clearly and maneuver her DVD. At one point she said, "Give a hug" very quietly. But I heard her. I leaned over and we were wrapped together for quite a while. I don't know who needed that more - me or her. She fell asleep again and when she woke up she seemed more alert so we decided we'd bring her home.
Home: I won't go into the details of the home trip. Suffice to say, still sick to her stomach and not really strong enough to walk up the steps on her own. Not fun. We brought her straight to her room and she drifted off holding my arm. I was so tired but just could not sleep. Instead, I did a bit of texting (a great feat since I had one arm tied up) and watched her breathe. We were diligent in giving her the pain medication as well as the anti-swelling med. She was not intersted in food but did have some water. Eventually, she fell asleep for the night - with me in her bed. It wasn't an good night's sleep for me.
Day one of recovery: A disasterous morning. It started when she found out she could not have popcorn. For ten days. From there it was all downhill. Screaming and rubbing her arms and the worst part - she slapped her face. Ug. We finally got desperate and thought if we could get her outside for a while she'd be distracted, so we decided to go to ride the trolleys. We were just about there when it became obvious that she was still agitated so we turned around and went back home for Ativan. Then we were off the trolleys again. It was probably a better idea than staying home but it was definitely not relaxing. She was scripting like crazy. There was one real highlight of the day though. It was obvious that she was not in much pain! She was eating (pancakes - no syrup) and mac and cheese. I decided to change from the heavy duty pain med to Motrin and see if that would still keep the pain in check and as far as I could tell, it did. She has never complained in fact, and as the day went on she became more settled on this idea of no popcorn. We went over the calendar a zillion times which was probably helpful as well. In truth we are dealing with two issues. Not only the postop week coming up but the fact that she still does not have school. Dealing with this long unstructured time combined with this wisdom teeth ordeal has really added to her overall stress...and mine.
So here we are, the end of the first day postop. She seems to be much more settled, though very tired. In fact, at 8:30 pm she asked to go to sleep which is unheard of! She's a bit swollen still and is very bothered by the feel of the area by her teeth (well, more technically, by the holes where her teeth used to be) but she is asking to go miniature golfing tomorrow and we will accomodate her. For me, these two days have been exhausting. The worry alone about all of the things that could go wrong is exhausting. The preplanning was well worth the tons of phone calls and had that not been done, I cannot even imagine how we would have done this. All is all, it could have been a much worse experience. With that, I am looking toward my own bed. A good night's sleep would be helpful to my mental health. I'm quite sure.
Wednesday, August 22, 2012
Wisdom teeth worries...
As my gal gets older we hit all sorts of new challenges...first there was puberty (it's own book of stories, really) and now we've come to the wisdom teeth issue. Her extraction is scheduled for Friday, just two days away, and already my anxiety is at full throttle.
We tried the procedure in the office. Yes, I was well aware that this was not going to work but apparently insurance companies do not like to pay for procedures to occur in the hospital that can occur in an office. Let's just say that when she shot up from the chair and ran down the hall screaming "NOOOOO" we knew our next step would be an outpatient procedure. Thanks to a wonderful fellow autism mom, I was able to get her into the local Children's Hospital here even though she is twenty and technically an adult. That's the good news.
There are challenges.
We have the "Before-the Procedure-Challenges." She cannot eat after midnight or drink clear fluids once she is four hours from the procedure. Since RJC is not one of those all night sleepers it means taking her out on Thursday night and staying up late in the hopes that she'll sleep until morning and I will not have to fight with her when she wants a snack at 2 am.
Then we have the "Day-of-Procedure-Challenges." First, she is not an easy girl to knock out. The little drink they give her doesn't affect her in the slightest. Of course I tell them this at the hospital but they insist they know better and give it to her anyway. When this doesn't work, they try to get her to walk with them to the OR so they can put the mask on. Again, not happening. Next step is the idea of putting in an IV. That's what previously caused her to run down the hall screaming when we were at the office so...no. Last time we had a procedure done we went through all of these options (again, I tried to tell them...) and were holding up the OR schedule by about an hour and a half. Finally a guy came running across the room, totally took her by surprise and jabbed her with a needle. Creepy when her eyes started to roll back and she was moving in slow motion but effective. Looks like this is the plan this time as well and I'm not looking forward to it. I can only hope that they will forgo all of the other options so as not to prolong the inevitable. Second, RJC does not come out of anesthesia well. She basically freaks out. Stands on the little stretcher and screams, ripping at all of the stuff attached to her. Last time it took six people to get her back to lying down safely and in order to do that they grudgingly took out all of the various monitors and needles attached. She will also not be the least cooperative if she wakes up with gauze in her mouth. I'm working with the hospital staff now to avoid these issues, but so far there is no actual plan in place. We will talk about it when we get there, I suppose, but I'd be so much more happy if we could make a plan. Now. As in...not Friday. Sigh.
Still to go, the "Many-Days-After-the-Procedure-Challenges." Her most favorite go-to food? Popcorn. The one specifically mentioned food she cannot have for ten days? Popcorn. Feel my pain, here? She should also rinse with salt water (um...yeah) and hold an ice pack on her mouth (sensory issues abound in my gal). No straws can be used for the first few days. We can probably get around that one but she won't be happy. There are lots more "no" things on the list that will be a problem: nothing hot the first day (soup - an everyday food), nothing acidic the first few days (OJ - another everyday food, mutliple times a day) and nothing crunchy for a while (bye bye crackers).
I'm working hard to see if we can get something to ease her anxiety and keep her sleepy the first two days. Not that I'm a fan of a medicated child, but in this situation I think it's best for her to be able to sleep alot the first few days. She will not do this on her own. We've used valium and ativan in the past for other situations though they barely touch her, especially when her adrenaline kicks in. Telling her to sit and relax is a foreign concept. I'm still working on this and I have two days. The oral surgeon doesn't want to prescribe anything like this because they don't know her. Same with the hospital staff. So I'm working through our pedicatrician. Fingers crossed.
RJC does not know she's going into the hospital. She would obsess and her anxiety would go through the roof. I have been telling her the story of her previous times there so she is remembering some of her previous experiences. Interestingly, she has wonderful memories of her previous times there and is always asking to go back. I'm hoping that Friday morning she'll feel the same way. In the meantime, I am up in the middle of the night trying to picture this being successful. There are so many steps along the way where I need other people to understand that RJC is...well...different. Not just different from a typical twenty year old but different from many kids on the spectrum. I have found that often medical professionals lump all kids on the spectrum in a category with no concept of the idea that it is called a spectrum for a reason. I then need these professionals to work with me to help them work with her (did you follow that)?. That takes a special type of "professional" since often the whole "work with the mom" thing is not what comes naturally.
So...the countdown to Friday begins. I know that if we can just get through the first few days we should be ok. I chose this date to do the extraction because it gives her time to heal before school starts. Please don't send me your horror stories, but any words of encouragement or success stories are welcome. Make that...needed.
We tried the procedure in the office. Yes, I was well aware that this was not going to work but apparently insurance companies do not like to pay for procedures to occur in the hospital that can occur in an office. Let's just say that when she shot up from the chair and ran down the hall screaming "NOOOOO" we knew our next step would be an outpatient procedure. Thanks to a wonderful fellow autism mom, I was able to get her into the local Children's Hospital here even though she is twenty and technically an adult. That's the good news.
There are challenges.
We have the "Before-the Procedure-Challenges." She cannot eat after midnight or drink clear fluids once she is four hours from the procedure. Since RJC is not one of those all night sleepers it means taking her out on Thursday night and staying up late in the hopes that she'll sleep until morning and I will not have to fight with her when she wants a snack at 2 am.
Then we have the "Day-of-Procedure-Challenges." First, she is not an easy girl to knock out. The little drink they give her doesn't affect her in the slightest. Of course I tell them this at the hospital but they insist they know better and give it to her anyway. When this doesn't work, they try to get her to walk with them to the OR so they can put the mask on. Again, not happening. Next step is the idea of putting in an IV. That's what previously caused her to run down the hall screaming when we were at the office so...no. Last time we had a procedure done we went through all of these options (again, I tried to tell them...) and were holding up the OR schedule by about an hour and a half. Finally a guy came running across the room, totally took her by surprise and jabbed her with a needle. Creepy when her eyes started to roll back and she was moving in slow motion but effective. Looks like this is the plan this time as well and I'm not looking forward to it. I can only hope that they will forgo all of the other options so as not to prolong the inevitable. Second, RJC does not come out of anesthesia well. She basically freaks out. Stands on the little stretcher and screams, ripping at all of the stuff attached to her. Last time it took six people to get her back to lying down safely and in order to do that they grudgingly took out all of the various monitors and needles attached. She will also not be the least cooperative if she wakes up with gauze in her mouth. I'm working with the hospital staff now to avoid these issues, but so far there is no actual plan in place. We will talk about it when we get there, I suppose, but I'd be so much more happy if we could make a plan. Now. As in...not Friday. Sigh.
Still to go, the "Many-Days-After-the-Procedure-Challenges." Her most favorite go-to food? Popcorn. The one specifically mentioned food she cannot have for ten days? Popcorn. Feel my pain, here? She should also rinse with salt water (um...yeah) and hold an ice pack on her mouth (sensory issues abound in my gal). No straws can be used for the first few days. We can probably get around that one but she won't be happy. There are lots more "no" things on the list that will be a problem: nothing hot the first day (soup - an everyday food), nothing acidic the first few days (OJ - another everyday food, mutliple times a day) and nothing crunchy for a while (bye bye crackers).
I'm working hard to see if we can get something to ease her anxiety and keep her sleepy the first two days. Not that I'm a fan of a medicated child, but in this situation I think it's best for her to be able to sleep alot the first few days. She will not do this on her own. We've used valium and ativan in the past for other situations though they barely touch her, especially when her adrenaline kicks in. Telling her to sit and relax is a foreign concept. I'm still working on this and I have two days. The oral surgeon doesn't want to prescribe anything like this because they don't know her. Same with the hospital staff. So I'm working through our pedicatrician. Fingers crossed.
RJC does not know she's going into the hospital. She would obsess and her anxiety would go through the roof. I have been telling her the story of her previous times there so she is remembering some of her previous experiences. Interestingly, she has wonderful memories of her previous times there and is always asking to go back. I'm hoping that Friday morning she'll feel the same way. In the meantime, I am up in the middle of the night trying to picture this being successful. There are so many steps along the way where I need other people to understand that RJC is...well...different. Not just different from a typical twenty year old but different from many kids on the spectrum. I have found that often medical professionals lump all kids on the spectrum in a category with no concept of the idea that it is called a spectrum for a reason. I then need these professionals to work with me to help them work with her (did you follow that)?. That takes a special type of "professional" since often the whole "work with the mom" thing is not what comes naturally.
So...the countdown to Friday begins. I know that if we can just get through the first few days we should be ok. I chose this date to do the extraction because it gives her time to heal before school starts. Please don't send me your horror stories, but any words of encouragement or success stories are welcome. Make that...needed.
Subscribe to:
Posts (Atom)