Most of us know of the actor Robin Williams. I first saw him in the popular TV series "Mork and Mindy." Then several years later I saw him again in "Good Morning Vietnam." In the years since he has become one of my favorite actors. I love his quirky sense of humor. I also love how he jumps around from topic to topic so quickly. It is almost like stream of consciousness comedy. (Yep my own term right there. Feel free to use it.) I know I am not alone in my love for Robin Williams' body of work as he is one of the most popular actors of our time.
Can you imagine what it must have been like to be his mother? His brain is always on. I can imagine what family dinners must have been like. He was the life of the party but mealtimes took forever. When his mom asked him to clean his room, he had such trouble focusing that she probably ended up cleaning his room.
Can you picture being his boss? Picture this scenario: Robin is told to unload stock from a truck with some other fellow employees. The employees are quickly in hysterics by his actions but nothing gets accomplished.
On the one hand being Robin Williams' mother or supervisor is great because you are always laughing but on the other hand not much gets accomplished.
Wonder how I know so much? I live with a much younger version of Robin Williams. Princess is the life of the party. She has a very special charisma that lights up a room that she is in. However, getting her to accomplish anything takes lots of time and extra patience.
Take for instance the time we went looking for a brush at The Grove in LA. Princess and I had spent the night at a hotel nearby and were planning on spending the day at the American Girl Place there. I knew there were going to be lots of photo ops so I wanted her hair to look at least brushed but a brush was the one thing that I forgot to bring. I figured that I would be able to find a brush at one of the stores in The Grove. Wrong!! We walked from one end of the mall to the other with no success. What should have taken 5-10 minutes took us at least 1/2 hour. You see Princess feels it is her personal mission to pet every dog, talk to every small child (babies are best) and find something to compliment on every woman ( purse, earrings, shoes etc.)
When we finally arrived at the children's department in Nordstrom, the saleslady there told me that I could find a brush across the street at the CVS there. That would have required us walking back through the maze of dogs, babies and pretty ladies at least twice more since this drugstore was outside of the mall. I told the lady thanks anyways but I would just live with Princess' unkempt hair. This rude lady (Oh wait woman because true ladies are never rude.) replied " Well I guess you don't need a brush that bad." Lucky for her I did not complain to Nordstrom management about her. Lucky for Princess I did not let this rude comment ruin our day. We went on to have a lovely time at the American Girl Place, unkempt hair and all.
The above incident happened over 5 years ago but it is still a vivid memory. I still continue to deal with rude and ignorant people. I can choose to let them ruin my day or move on. Sometimes I can educate them but most of the time it is not worth my effort because they have a mindset that they could and would do better than I. Maybe some day I will have some of these naysayers come spend a day or even a week with our family.
For now I choose to pray for them and educate people through my blog. I also choose to embrace all of my daughter's personality. The fun, witty side as well as the inattentive side. The kind, loving and compassionate side and the not so kind side. I just pray for lots of peace and wisdom in raising my Robin Williams.
On an end note- A few years ago I told Princess that she didn't have to tell every lady that they had a pretty purse, necklace etc. Her response " But Mom how will they know that their purse, necklace etc. is pretty unless I tell them?" This response left me utterly speechless. To think that this child believes that it is her mission in life to bring cheer to others is just priceless. I love my little ambassador!
Bloggy Moms
Saturday, October 26, 2013
Monday, October 21, 2013
The Story Behind the Story
The other day I posted the following story on my Facebook wall:
Tonight Princess and I grabbed a bite at McD's. The cashier screamed at Princess and kept jerking her head around. She apologized to my daughter several times for scaring her and told me that she thought Princess was cute. Later I told Princess that I thought this young woman had Tourettes as her odd behaviors kept happening. I really felt for this gal. Turns out my daughter did too. She told me that she worried that this gal might not have any friends because of her behaviors. I explained what tics were and how the gal could not control them. I asked Princess if she would like to pray for her. She told me that she already had. Made me want to cry right there. Then I told her that maybe when there were no customers, she could go over and tell the cashier that she had prayed for her and that she knew what it was like to be different. Princess did so and even called her over to speak to her privately so as not to embarrass her. I would love to share this story with those professionals who told me that my child lacked empathy and compassion.
Suffice to say that over 50 people "liked' this story. It also garnered many comments from friends who either know my daughter or have experienced something similar in their lives. That being said, I decided to fill in the missing details. I specifically want to share with you, my readers, what the circumstances were that led some professionals ( ie. administrators) to come to the conclusion that my child lacked compassion.
When Princess was in preschool, she would occasional get aggressive with other children. We were blessed in that the school decided to let her continue there but the director did warn my husband and I that she saw something very wrong with our child. There was one time when Princess bit another child's finger quite hard. Since it did not appear that Princess had remorse, this administrator said that she lacked compassion and empathy. Later when I talked with my then 4 year old daughter about the incident, she told me that she didn't know what to say. She was kind of embarrassed. She also told me that the other child had asked her to bite her finger.
A year later when Princess was in Kindergarten, we started to see more aggression at school and at home. One day the playground supervisor told her to get off of the jungle gym. In her mind she had only been playing for just a short while so she didn't think it was time to get off. In her frustration she kicked several of her classmates as they walked by. The principal of the school suspended her for this action and for refusing to get off of the jungle gum. At our parent meeting that day, this principal also told us that she felt that our daughter lacked compassion.
That brings me to the day at Mc Donald's. I have seen Princess display aggression on numerous occasions but that doesn't mean she lacks compassion. She has shown me and others that she does have compassion and empathy for that matter. She does care about how others feel. One thing that is hard for her to understand is how her actions can affect others. I'm not sure where this comes from or what it called. Nonetheless I do know that my daughter cares very deeply for others.
So there you have it. My "Behind the Headlines" story. I hope you enjoyed it.
Stay tuned for future blog posts- Crying Wolf or Raising Robin Williams? Which one do you want to read next?
Tonight Princess and I grabbed a bite at McD's. The cashier screamed at Princess and kept jerking her head around. She apologized to my daughter several times for scaring her and told me that she thought Princess was cute. Later I told Princess that I thought this young woman had Tourettes as her odd behaviors kept happening. I really felt for this gal. Turns out my daughter did too. She told me that she worried that this gal might not have any friends because of her behaviors. I explained what tics were and how the gal could not control them. I asked Princess if she would like to pray for her. She told me that she already had. Made me want to cry right there. Then I told her that maybe when there were no customers, she could go over and tell the cashier that she had prayed for her and that she knew what it was like to be different. Princess did so and even called her over to speak to her privately so as not to embarrass her. I would love to share this story with those professionals who told me that my child lacked empathy and compassion.
Suffice to say that over 50 people "liked' this story. It also garnered many comments from friends who either know my daughter or have experienced something similar in their lives. That being said, I decided to fill in the missing details. I specifically want to share with you, my readers, what the circumstances were that led some professionals ( ie. administrators) to come to the conclusion that my child lacked compassion.
When Princess was in preschool, she would occasional get aggressive with other children. We were blessed in that the school decided to let her continue there but the director did warn my husband and I that she saw something very wrong with our child. There was one time when Princess bit another child's finger quite hard. Since it did not appear that Princess had remorse, this administrator said that she lacked compassion and empathy. Later when I talked with my then 4 year old daughter about the incident, she told me that she didn't know what to say. She was kind of embarrassed. She also told me that the other child had asked her to bite her finger.
A year later when Princess was in Kindergarten, we started to see more aggression at school and at home. One day the playground supervisor told her to get off of the jungle gym. In her mind she had only been playing for just a short while so she didn't think it was time to get off. In her frustration she kicked several of her classmates as they walked by. The principal of the school suspended her for this action and for refusing to get off of the jungle gum. At our parent meeting that day, this principal also told us that she felt that our daughter lacked compassion.
That brings me to the day at Mc Donald's. I have seen Princess display aggression on numerous occasions but that doesn't mean she lacks compassion. She has shown me and others that she does have compassion and empathy for that matter. She does care about how others feel. One thing that is hard for her to understand is how her actions can affect others. I'm not sure where this comes from or what it called. Nonetheless I do know that my daughter cares very deeply for others.
So there you have it. My "Behind the Headlines" story. I hope you enjoyed it.
Stay tuned for future blog posts- Crying Wolf or Raising Robin Williams? Which one do you want to read next?
Saturday, September 14, 2013
Phone Merry Go Round, Lies, and Hope
Hi all,
I know that I have been sporadic at best about posting here. There is a reason for that. We've had a rough summer to say the least. The start of school has not been any better.
Here's a glimpse into what I/we have been dealing with for the last few weeks.
Yesterday morning I got on the phone with the intent of talking to someone in charge at XYZ Insurance about the sudden change in Princess's treatment plan. That sure as heck did not happen. Instead I was told to call this number and that number. No one wanted to take responsibility or even knew who I was supposed to talk to about discharging Princess too early from the Purple Spot Intensive Center or (PSIC). Finally I got the number of the ABC Department. This is the team that sends out the Purple Response Team when Princess has a really bad flare up. They are the ones who also have the lovely in home crisis team that we found to be a complete waste of our time.
The gentleman who I talked to could barely speak English but somehow I was able to understand him. He told me that there was an Imelda (Not her real name) who worked there who indeed may have written a letter about Princess's care to the PSIC . He asked me if I wanted to talk to her but by that time I was so ticked, it would not have been pretty. This gentleman, who we'll refer to as TD from now on, told me that it was the doctor who made the decision to discharge Princess. I told him that it was my understanding that Imelda had written a letter that at the very least influenced the team at the PSIC to discharge Princess. He told me that that was incorrect. He stated again that the doctor made the decision. Round and round we went. About the only good thing that came out of that conversation was that TD told me that we have every right to use our own medical team. We should not be made to feel that we have to use theirs. I told him that if this is the case, then he needs to let his employees know this and to stop bullying us.
Later when we went to go pick up Princess at PSIC, I was recounting this story to one of the nurses. Who should happen to be sitting there but the PSIC's doctor!!! He confirmed what I already believed; that they were told that XYZ Insurance would not pay for more care for Princess at their facility. There is a letter that was emailed or faxed to PSIC but I do not have it yet. Princess's case manager at PSIC was on another line and could not talk to me. I will be trying to pursue this Monday. I am beyond irked. I was flat out lied to by XYZ Insurance staff not once but multiple times Friday morning as I tried to get answers.
In the midst of the flurry of my phone calls today, Princess's case manger through the school district called. She set up a meeting for Princess to meet the director of her new school on Monday and start on Tuesday. She told me that if Princess has problems accessing the curriculum at this school, that the IEP team can call an emergency meeting to look at other options. Regardless, there will be a 30 day IEP meeting at Ocean Coastal Academy (Not its real name) to see how Princess is doing there.
When we went to pick up Princess, I was discouraged because Princess was still in her night gown and it was 12 p.m. I told her that she needed to put on clothes before we left. That only took 45 minutes.( Insert smirk here). Then as we are exiting, Princess reaches under her tank top and pulls out her undergarment. My husband just took it and put it in one of the bags without missing a beat.
All of the way home Princes was talking non stop and I thought we'd have a repeat of last time. (We had to return Princess to PSIC in just over 24 hours because the Purple Spots were still there.) Thankfully we made it home without incident. It was funny because about 15 minutes before we arrived home Princess blurts out "Are we there yet? My bum is getting sore." I about busted a gut trying to stifle my laugh.
When we got home, I let Princess rent a movie on iTunes so that my husband could run a quick errand and I could take a breather. We had no major episodes/ incidents tonight. Princess did a few impulsive things and was a little non compliant but we did not see any Purple Spots creeping in.
We have found that since we never no when the Purple Spots will appear or when Princess will become impulsive, one of us has to be in the same room as she is just about all of the time. Makes for one tired mommy and daddy.
So hopefully the rest of the weekend will go well.
That's it in a nutshell. When things settle down a bit, I hope to be able to post/ write more often but for now I am just happy to have a little reprieve from our roller coaster life.
I know that I have been sporadic at best about posting here. There is a reason for that. We've had a rough summer to say the least. The start of school has not been any better.
Here's a glimpse into what I/we have been dealing with for the last few weeks.
Yesterday morning I got on the phone with the intent of talking to someone in charge at XYZ Insurance about the sudden change in Princess's treatment plan. That sure as heck did not happen. Instead I was told to call this number and that number. No one wanted to take responsibility or even knew who I was supposed to talk to about discharging Princess too early from the Purple Spot Intensive Center or (PSIC). Finally I got the number of the ABC Department. This is the team that sends out the Purple Response Team when Princess has a really bad flare up. They are the ones who also have the lovely in home crisis team that we found to be a complete waste of our time.
The gentleman who I talked to could barely speak English but somehow I was able to understand him. He told me that there was an Imelda (Not her real name) who worked there who indeed may have written a letter about Princess's care to the PSIC . He asked me if I wanted to talk to her but by that time I was so ticked, it would not have been pretty. This gentleman, who we'll refer to as TD from now on, told me that it was the doctor who made the decision to discharge Princess. I told him that it was my understanding that Imelda had written a letter that at the very least influenced the team at the PSIC to discharge Princess. He told me that that was incorrect. He stated again that the doctor made the decision. Round and round we went. About the only good thing that came out of that conversation was that TD told me that we have every right to use our own medical team. We should not be made to feel that we have to use theirs. I told him that if this is the case, then he needs to let his employees know this and to stop bullying us.
Later when we went to go pick up Princess at PSIC, I was recounting this story to one of the nurses. Who should happen to be sitting there but the PSIC's doctor!!! He confirmed what I already believed; that they were told that XYZ Insurance would not pay for more care for Princess at their facility. There is a letter that was emailed or faxed to PSIC but I do not have it yet. Princess's case manager at PSIC was on another line and could not talk to me. I will be trying to pursue this Monday. I am beyond irked. I was flat out lied to by XYZ Insurance staff not once but multiple times Friday morning as I tried to get answers.
In the midst of the flurry of my phone calls today, Princess's case manger through the school district called. She set up a meeting for Princess to meet the director of her new school on Monday and start on Tuesday. She told me that if Princess has problems accessing the curriculum at this school, that the IEP team can call an emergency meeting to look at other options. Regardless, there will be a 30 day IEP meeting at Ocean Coastal Academy (Not its real name) to see how Princess is doing there.
When we went to pick up Princess, I was discouraged because Princess was still in her night gown and it was 12 p.m. I told her that she needed to put on clothes before we left. That only took 45 minutes.( Insert smirk here). Then as we are exiting, Princess reaches under her tank top and pulls out her undergarment. My husband just took it and put it in one of the bags without missing a beat.
All of the way home Princes was talking non stop and I thought we'd have a repeat of last time. (We had to return Princess to PSIC in just over 24 hours because the Purple Spots were still there.) Thankfully we made it home without incident. It was funny because about 15 minutes before we arrived home Princess blurts out "Are we there yet? My bum is getting sore." I about busted a gut trying to stifle my laugh.
When we got home, I let Princess rent a movie on iTunes so that my husband could run a quick errand and I could take a breather. We had no major episodes/ incidents tonight. Princess did a few impulsive things and was a little non compliant but we did not see any Purple Spots creeping in.
We have found that since we never no when the Purple Spots will appear or when Princess will become impulsive, one of us has to be in the same room as she is just about all of the time. Makes for one tired mommy and daddy.
So hopefully the rest of the weekend will go well.
That's it in a nutshell. When things settle down a bit, I hope to be able to post/ write more often but for now I am just happy to have a little reprieve from our roller coaster life.
Friday, August 23, 2013
Mornings Are a Bear
My husband and I are blessed that Princess gets picked up at our door step every school morning by a District provided bus. This is a little perk that the District provides because Princess's home school doesn't have a program for kids like her. I'm not gonna lie here. I love this little perk. Read on and you'll see why.
The bus arrives at our door step at approximately 6:50 every school morning. This means that Princess really should be ready on the curb when it pulls up. In order to facilitate that happening, her alarm goes off at 6:00. Yes I know that is early.
To make it easier for Princess to get up in the morning, we try really hard to make sure she is in bed, lights out, by 8:30 every week night. But gosh darn it 6:00 still comes whether we like it or not.
When I set the alarm at night, I make sure one of Princess's favorite songs or playlists are set to go off. Usually it involves Michael Jackson. ( Princess is actually sad that she will never get to meet Michael Jackson here on earth because she loves his music so much. For some reason it resonates with her.- But I digress.) At about 6:05 or 6:10 I go in Princess's bedroom to encourage her to wake up. Typically that involves turning off her fans and turning on the lights. She takes some medication in the morning so I give her that with a glass of water in hopes that once she sits up to take it, she will get up out of bed and get ready. Right now at this time of year, that is a complete fantasy on my part. After the medicine is swallowed, Princess lays back down and plays possum until the last possible moment. This may sound drastic but I sometimes have to resort to taking Princess's sheet away to motivate her to get up. When she is cold and uncomfortable, she knows one of the quickest ways to warm up is to get dressed.
I find it humorous that the one thing that always succeeds in getting Princess up out of bed is her bladder. When that happens, she bolts out of her room with lightening speed but not before taking her school clothes with her to the bathroom.
This past Monday Princess missed the bus because she refused to get out of bed. It was funny though because shortly after it left, she got up, got dressed and we made it to school before the final morning bell rang.
On Tuesday I implemented a new strategy. I told her that if she made the bus then she would get 30 minutes of TV time after school. That did the trick. She once again waited until the last possible moment before getting out of bed but she worked hard to be ready for the bus. On this particular day, she was dressed except for her shoes when the bus pulled up. The District has a policy that children must wear shoes before boarding the bus so Princess put her shoes on quickly and boarded the bus with her shoe laces flapping in the wind.
This same tactic worked well for me on Wednesday so I upped the stakes for Thursday. I told her that not only did she have to be dressed but the dog had to be fed and her shoes needed to be tied before the bus pulled up.
This morning, Friday, I kept the expectations the same as the previous day. Princess did not meet my expectations but she was fully aware of them. As she was running to catch the bus with her laces flapping in the wind she said to me " Can I still watch TV after school?" My goal is to get her on the bus with as little drama as possible so I responded with " We'll see when you get home."
The interesting thing about all of this is that I have a very detailed chart that we used this summer during summer school. It tells Princess all of the tasks she must complete and how long she has for each one. I haven't used the chart since school resumed because for Princess the goal right now is to get on the bus. You can bet that I will start the chart again, maybe even next week, but right now we are taking baby steps.
Getting back to the beginning of the post where I said that I love the perk of the school bus, by the time Princess is actually ready for the bus, it is just so nice to be able to say "Your bus is here." Princess knows the bus is not going to wait for her. By the time that the bus arrives I am spent and need a little time to recharge. Having to take Princess to school means that my fuse gets a little shorter. That's why having transportation provided for my daughter is a blessing.
Can anyone relate? What do your mornings look like? Feel free to post comments directly on this site.
The bus arrives at our door step at approximately 6:50 every school morning. This means that Princess really should be ready on the curb when it pulls up. In order to facilitate that happening, her alarm goes off at 6:00. Yes I know that is early.
To make it easier for Princess to get up in the morning, we try really hard to make sure she is in bed, lights out, by 8:30 every week night. But gosh darn it 6:00 still comes whether we like it or not.
When I set the alarm at night, I make sure one of Princess's favorite songs or playlists are set to go off. Usually it involves Michael Jackson. ( Princess is actually sad that she will never get to meet Michael Jackson here on earth because she loves his music so much. For some reason it resonates with her.- But I digress.) At about 6:05 or 6:10 I go in Princess's bedroom to encourage her to wake up. Typically that involves turning off her fans and turning on the lights. She takes some medication in the morning so I give her that with a glass of water in hopes that once she sits up to take it, she will get up out of bed and get ready. Right now at this time of year, that is a complete fantasy on my part. After the medicine is swallowed, Princess lays back down and plays possum until the last possible moment. This may sound drastic but I sometimes have to resort to taking Princess's sheet away to motivate her to get up. When she is cold and uncomfortable, she knows one of the quickest ways to warm up is to get dressed.
I find it humorous that the one thing that always succeeds in getting Princess up out of bed is her bladder. When that happens, she bolts out of her room with lightening speed but not before taking her school clothes with her to the bathroom.
This past Monday Princess missed the bus because she refused to get out of bed. It was funny though because shortly after it left, she got up, got dressed and we made it to school before the final morning bell rang.
On Tuesday I implemented a new strategy. I told her that if she made the bus then she would get 30 minutes of TV time after school. That did the trick. She once again waited until the last possible moment before getting out of bed but she worked hard to be ready for the bus. On this particular day, she was dressed except for her shoes when the bus pulled up. The District has a policy that children must wear shoes before boarding the bus so Princess put her shoes on quickly and boarded the bus with her shoe laces flapping in the wind.
This same tactic worked well for me on Wednesday so I upped the stakes for Thursday. I told her that not only did she have to be dressed but the dog had to be fed and her shoes needed to be tied before the bus pulled up.
This morning, Friday, I kept the expectations the same as the previous day. Princess did not meet my expectations but she was fully aware of them. As she was running to catch the bus with her laces flapping in the wind she said to me " Can I still watch TV after school?" My goal is to get her on the bus with as little drama as possible so I responded with " We'll see when you get home."
The interesting thing about all of this is that I have a very detailed chart that we used this summer during summer school. It tells Princess all of the tasks she must complete and how long she has for each one. I haven't used the chart since school resumed because for Princess the goal right now is to get on the bus. You can bet that I will start the chart again, maybe even next week, but right now we are taking baby steps.
Getting back to the beginning of the post where I said that I love the perk of the school bus, by the time Princess is actually ready for the bus, it is just so nice to be able to say "Your bus is here." Princess knows the bus is not going to wait for her. By the time that the bus arrives I am spent and need a little time to recharge. Having to take Princess to school means that my fuse gets a little shorter. That's why having transportation provided for my daughter is a blessing.
Can anyone relate? What do your mornings look like? Feel free to post comments directly on this site.
Wednesday, August 14, 2013
Back-to-School?
I have been thinking about this post all week. You see because of things that are beyond my control, my daughter did not start school on Monday like so many other children in Fullerton did. Since I became a SAHM I did not go back to school as a teacher for the first time in 9 years (Only the second time in over 20 years!). The only other time that I did not go back to teach in the Fall was the year that Princess was born. I was still on maternity leave until November of that year.
I am by nature a very positive and upbeat person. Sometimes this can be a detriment. This time, however, I must face reality and realize that this stinks. My daughter and I did not get to experience all of the first day of school joys with the rest of her school mates. Oh I know that we can make our own special memories when she is able to start school. We will take pictures. I will pack a special lunch. She will pick out a cool outfit to wear. Heck we may even celebrate the first day back with a special treat when she returns from her first day. For now I will try to forget all that she missed out on.
So what do I do when I need a kid fix? Well I borrow another kid for the day. My favorite kid to borrow is my BFF's daughter. She is Princess J. She is such a cool kid. On Monday I picked her up from day care and surprised her by taking her to the mall and spoiling her rotten. Those were the words of her grown up big sister. The whole time we were out there was no drama, very little whining and a whole lotta gratitude. She and I were able to talk about her day, her new teacher and her friends.
I know this may sound crazy but it is so nice to be able to take a child out and not have to worry about melt downs, wandering off or aggression. Don't get me wrong. I love Princess and we have done some pretty cool things together but I can pretty much count on her having problems wherever we go and whatever we do so those times out are becoming less and less.
Tomorrow Princess will start school. You can be sure that I will try to make as special as possible but I have to downplay of it otherwise those darn purple spots will return. You see too much excitement and stimulus aggravate them.
By the way if you were wondering what those purple spots were, they are aggression fueled by a chemical imbalance. Hopefully we are closer to getting all of this under control.
Photo courtesy of: http://www.dreamstime.com/stock-photos-schoolhouse-image9044943
I am by nature a very positive and upbeat person. Sometimes this can be a detriment. This time, however, I must face reality and realize that this stinks. My daughter and I did not get to experience all of the first day of school joys with the rest of her school mates. Oh I know that we can make our own special memories when she is able to start school. We will take pictures. I will pack a special lunch. She will pick out a cool outfit to wear. Heck we may even celebrate the first day back with a special treat when she returns from her first day. For now I will try to forget all that she missed out on.
So what do I do when I need a kid fix? Well I borrow another kid for the day. My favorite kid to borrow is my BFF's daughter. She is Princess J. She is such a cool kid. On Monday I picked her up from day care and surprised her by taking her to the mall and spoiling her rotten. Those were the words of her grown up big sister. The whole time we were out there was no drama, very little whining and a whole lotta gratitude. She and I were able to talk about her day, her new teacher and her friends.
I know this may sound crazy but it is so nice to be able to take a child out and not have to worry about melt downs, wandering off or aggression. Don't get me wrong. I love Princess and we have done some pretty cool things together but I can pretty much count on her having problems wherever we go and whatever we do so those times out are becoming less and less.
Tomorrow Princess will start school. You can be sure that I will try to make as special as possible but I have to downplay of it otherwise those darn purple spots will return. You see too much excitement and stimulus aggravate them.
By the way if you were wondering what those purple spots were, they are aggression fueled by a chemical imbalance. Hopefully we are closer to getting all of this under control.
Sunday, August 11, 2013
Highlights of Our Summer Vacation
I love that FaceBook has reconnected me with so many family and friends. I have FaceBook friends from my high school and college years. I have FaceBook friends who are former parents and students that I have worked with or taught in the past. Many extended family members are friends as well. I enjoy reading their posts and seeing what they are up to. However, sometimes it is hard to see what a great life they are living. They are basking in the sun while vacationing. They are excited that their child just got accepted into a major university or baseball club team. Their daughter just completed her very first ballet class. FaceBook is a place where I can rejoice alongside of them. It is also a painful reminder of how very different my life is.
Since Princesses Purple Spots flared up so badly this summer, we were restricted to where we could go and what we could see. Most of Princesses days were spent at home swimming, doing crafts and reading. We know from experience that the more outside activities that Princess participate in, the worse her Purple Spots become.
The other day I was talking to my husband. I made the comment that while some people tour the Major League Ball Fields or the famous California Missions, our family has toured other lesser known facilities. At one Purple Spot Clinic, I told the intake staff member there that perhaps my family should get their own parking space. I mean we are now becoming regulars. We know the staff members on a personal basis and they know us.
As a result of Princess's condition, we had a very limited repertoire of events that we participated in this summer. When Princess was not confined to home, many of our outings consisted of checking in at the Purple Spot therapist's office or the Purple Spot doctor's office. Sometimes our only outing for the day meant a trip to the pharmacist to pick up more medication. Princess really wanted to go to the beach or have play dates over but those activities only exacerbate her diagnoses. Come to think of it, we did not go to the beach once this Summer.
If you know me, I like to be on the go. I am an extrovert. My energy comes from being with people. If I am cooped up too long, I become rather difficult to live with. My husband knows this even though he is the antithesis of this. He would rather stay home doing work around the house. Since he realizes what I need, he will watch Princess so that I can attend bible study or get together with a friend. For my part, I will stay home with Princess so that my husband can go to Home Depot or any other masculine store so that he can get the supplies that he needs for his garden or any other current fix-it project he may be working on.
And so as Summer vacation draws to a close for us, I can't help but to notice what a very different experience our family had this Summer than many of my friends and family. It may be this way for a while. And I am OK with that as long as Princess gets what she needs. It is also important that my husband and I, who are caring for her, get the breaks that we need so that we can be the best possible caregivers for her.
P.S. You can read more about Princesses Purple Spots here.
Here's a picture of some of the bounty from my husband's current number one stress reliever.
Since Princesses Purple Spots flared up so badly this summer, we were restricted to where we could go and what we could see. Most of Princesses days were spent at home swimming, doing crafts and reading. We know from experience that the more outside activities that Princess participate in, the worse her Purple Spots become.
The other day I was talking to my husband. I made the comment that while some people tour the Major League Ball Fields or the famous California Missions, our family has toured other lesser known facilities. At one Purple Spot Clinic, I told the intake staff member there that perhaps my family should get their own parking space. I mean we are now becoming regulars. We know the staff members on a personal basis and they know us.
As a result of Princess's condition, we had a very limited repertoire of events that we participated in this summer. When Princess was not confined to home, many of our outings consisted of checking in at the Purple Spot therapist's office or the Purple Spot doctor's office. Sometimes our only outing for the day meant a trip to the pharmacist to pick up more medication. Princess really wanted to go to the beach or have play dates over but those activities only exacerbate her diagnoses. Come to think of it, we did not go to the beach once this Summer.
If you know me, I like to be on the go. I am an extrovert. My energy comes from being with people. If I am cooped up too long, I become rather difficult to live with. My husband knows this even though he is the antithesis of this. He would rather stay home doing work around the house. Since he realizes what I need, he will watch Princess so that I can attend bible study or get together with a friend. For my part, I will stay home with Princess so that my husband can go to Home Depot or any other masculine store so that he can get the supplies that he needs for his garden or any other current fix-it project he may be working on.
And so as Summer vacation draws to a close for us, I can't help but to notice what a very different experience our family had this Summer than many of my friends and family. It may be this way for a while. And I am OK with that as long as Princess gets what she needs. It is also important that my husband and I, who are caring for her, get the breaks that we need so that we can be the best possible caregivers for her.
P.S. You can read more about Princesses Purple Spots here.
Saturday, July 27, 2013
The System is Broken
Hello,
I was planning on writing the blog post this past week but encountered a bump in the road. Just know that if you pray my little family would really covet your prayers.
On with the topic!
As a result of some challenges we had to put Princess (her new name for this blog :) ) on a different insurance. We were told by the professionals who work with us that this was a good option and that we could get Princess the medical help that she needed. They were somewhat aware that it would not be as good as what we previously had but it couldn't hurt to try. Besides it would be a fix for an imminent need. Mind you neither of these professionals had ever had any personal experience with this insurance but they had clients who had.
So I called the powers that be and set up Princess on this insurance. A few days later Princess visited her regular doctor who gave us some prescriptions to fill. When I dropped them off at our local pharmacy, I was told one of the medications that Princess had been taking for almost three years, would not be covered. For the next three weeks her doctor and I begged and pleaded with the insurance to OK this medication. We were denied time and time again because Princess had never tried the shorter acting version of the same medication. So with an attitude of cautiousness we tried the "new to us" medication. It was as if I had given my daughter a sugar pill. It had no effect on her whatsoever. In fact this post highlights the effect it did have on her.
Thankfully Princess's doctor is very wise and encouraged me to apply to the manufacturer of the good medication. This process took about two weeks to complete. The prescription for the tried and true medication based on Princess's need arrived via USPS about four days after we started on the new medication.
During the time that all of these medication issues were happening, Princess started to have increasing flare ups with a recurring problem. For the sake of the blog I will call them purple spots.
We took her to the ER for these purple spots. The doctors there told us that indeed she needed more care for them but since she was on this new insurance, another person would have to come out to inspect her purple spots. After about three hours at the hospital, a gentleman came out from the purple spot wannabe clinic. He interviewed Princess and then myself about these purple spots. He made the determination that the purple spots were not that bad since they had mostly gone away by the time he arrived. He did, however, tell us that members of his clinic would be monitoring the purple spots. A few days later, the purple spot monitors came out to our house to see if they could help us out. To put it mildly, in addition to not helping with the purple spots, they actually made them worse. We asked for some in home therapy to help us learn how to best manage the purple spots. We were told that we would have to give up our professional team in order to get this wonderful and highly acclaimed therapy.
I was not willing to give up what I know to be exceptional service. I know that I will not get a phone call back from their doctors or therapists in what is often less than 30 minutes. There are many times that I have had to call on the weekends. I always get a call back in a timely manner from both professionals that help us with Princess. In addition our professional team have been very supportive of our entire family for the past few years.
The purple spot clinic team did give us a few numbers to call should the purple spots get out of control again. Unfortunately the individuals on the other end of the phone were of no help either. They told us that if Princess's purple spots were not at a certain level ie did not cover a certain percentage of her body, then they could not help us. Princess's purple spots were now starting to affect the rest of the family's quality of life but still no help was provided.
Let me stop here and say that Princess's doctor was well aware of how bad the purple spots had become but she didn't want to prescribe any medication for them until we had the other medication snafu resolved. Her fear was that a new medication for the purple spots might interfere with the medication for attention.
At one point in all of this madness, I was on the phone with one of the members of the purple spot clinic venting my frustrations, she said "We hear that complaint a lot. This seems to be a problem. The system needs fixing." She was frustrated as well. She was just a messenger following the protocol of the clinic.
I had another clinic worker tell me that she felt bad that her clinic could not help us. She felt that Princess's purple spots required a higher level of care than her agency could provide.
On a recent day, Princess's purple spots were really bad. They were affecting her quality of life. By this time we had had numerous county people and clinic people tell us that the spots weren't bad. One community helper even asked us if we had tried washing her skin. Another purple spot doctor told me "We will not be coming out to your house today." At that point, I ended the phone call rather quickly.
One thing about these purple spots is that eventually they merge into one giant purple blotch. That is exactly what happened. Once they became a purple blotch, the clinic assessor determined that Princess could get the medical attention that she needed.
Unfortunately there was a very high price to pay. I hope and pray that my sweet girl can fully recover from the insurance agency's need to control costs.
Princess's purple spots are starting to diminish but the giant blotch could have been prevented had the insurance given her the treatment and the medications she needed in the first place.
As an aside, about a week after starting with the new insurance, I attended a new member orientation where I found out that their motto went something like this " We strive to provide the best medical treatment necessary in the most cost efficient manner." I feel like it should have read " We strive to provide medical treatment that is cost efficient to us but you may not get the best treatment."
Knowing what I know now, I would have never put my baby girl on this sorry excuse for insurance. Our goal is to get her back on quality insurance in the very near future.
I leave you with one final thought. After this experience, I am not so certain that government run insurance is the answer to our country's medical crisis.
I was planning on writing the blog post this past week but encountered a bump in the road. Just know that if you pray my little family would really covet your prayers.
On with the topic!
As a result of some challenges we had to put Princess (her new name for this blog :) ) on a different insurance. We were told by the professionals who work with us that this was a good option and that we could get Princess the medical help that she needed. They were somewhat aware that it would not be as good as what we previously had but it couldn't hurt to try. Besides it would be a fix for an imminent need. Mind you neither of these professionals had ever had any personal experience with this insurance but they had clients who had.
So I called the powers that be and set up Princess on this insurance. A few days later Princess visited her regular doctor who gave us some prescriptions to fill. When I dropped them off at our local pharmacy, I was told one of the medications that Princess had been taking for almost three years, would not be covered. For the next three weeks her doctor and I begged and pleaded with the insurance to OK this medication. We were denied time and time again because Princess had never tried the shorter acting version of the same medication. So with an attitude of cautiousness we tried the "new to us" medication. It was as if I had given my daughter a sugar pill. It had no effect on her whatsoever. In fact this post highlights the effect it did have on her.
Thankfully Princess's doctor is very wise and encouraged me to apply to the manufacturer of the good medication. This process took about two weeks to complete. The prescription for the tried and true medication based on Princess's need arrived via USPS about four days after we started on the new medication.
During the time that all of these medication issues were happening, Princess started to have increasing flare ups with a recurring problem. For the sake of the blog I will call them purple spots.
We took her to the ER for these purple spots. The doctors there told us that indeed she needed more care for them but since she was on this new insurance, another person would have to come out to inspect her purple spots. After about three hours at the hospital, a gentleman came out from the purple spot wannabe clinic. He interviewed Princess and then myself about these purple spots. He made the determination that the purple spots were not that bad since they had mostly gone away by the time he arrived. He did, however, tell us that members of his clinic would be monitoring the purple spots. A few days later, the purple spot monitors came out to our house to see if they could help us out. To put it mildly, in addition to not helping with the purple spots, they actually made them worse. We asked for some in home therapy to help us learn how to best manage the purple spots. We were told that we would have to give up our professional team in order to get this wonderful and highly acclaimed therapy.
I was not willing to give up what I know to be exceptional service. I know that I will not get a phone call back from their doctors or therapists in what is often less than 30 minutes. There are many times that I have had to call on the weekends. I always get a call back in a timely manner from both professionals that help us with Princess. In addition our professional team have been very supportive of our entire family for the past few years.
The purple spot clinic team did give us a few numbers to call should the purple spots get out of control again. Unfortunately the individuals on the other end of the phone were of no help either. They told us that if Princess's purple spots were not at a certain level ie did not cover a certain percentage of her body, then they could not help us. Princess's purple spots were now starting to affect the rest of the family's quality of life but still no help was provided.
Let me stop here and say that Princess's doctor was well aware of how bad the purple spots had become but she didn't want to prescribe any medication for them until we had the other medication snafu resolved. Her fear was that a new medication for the purple spots might interfere with the medication for attention.
At one point in all of this madness, I was on the phone with one of the members of the purple spot clinic venting my frustrations, she said "We hear that complaint a lot. This seems to be a problem. The system needs fixing." She was frustrated as well. She was just a messenger following the protocol of the clinic.
I had another clinic worker tell me that she felt bad that her clinic could not help us. She felt that Princess's purple spots required a higher level of care than her agency could provide.
On a recent day, Princess's purple spots were really bad. They were affecting her quality of life. By this time we had had numerous county people and clinic people tell us that the spots weren't bad. One community helper even asked us if we had tried washing her skin. Another purple spot doctor told me "We will not be coming out to your house today." At that point, I ended the phone call rather quickly.
One thing about these purple spots is that eventually they merge into one giant purple blotch. That is exactly what happened. Once they became a purple blotch, the clinic assessor determined that Princess could get the medical attention that she needed.
Unfortunately there was a very high price to pay. I hope and pray that my sweet girl can fully recover from the insurance agency's need to control costs.
Princess's purple spots are starting to diminish but the giant blotch could have been prevented had the insurance given her the treatment and the medications she needed in the first place.
As an aside, about a week after starting with the new insurance, I attended a new member orientation where I found out that their motto went something like this " We strive to provide the best medical treatment necessary in the most cost efficient manner." I feel like it should have read " We strive to provide medical treatment that is cost efficient to us but you may not get the best treatment."
Knowing what I know now, I would have never put my baby girl on this sorry excuse for insurance. Our goal is to get her back on quality insurance in the very near future.
I leave you with one final thought. After this experience, I am not so certain that government run insurance is the answer to our country's medical crisis.
Here is a picture of my sweet girl on a day when the purple spots are on vacation
Subscribe to:
Posts (Atom)