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.

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.

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

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.

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.

 

Here is a picture of my sweet girl on a day when the purple spots are on vacation

Dennis the Menace on Steroids

Hi all,
Things have been pretty hectic around here to say the least.  Now that Summer is here I was going to try to blog once a week or once every other week. I guess that's not going to happen.
In the midst of our mayhem and chaos I have found something to laugh about. I am calling these last few days Living With Dennis the Menace on Steroids.
In the late 50's there was a TV show called "Dennis the Menace." On it a tow headed boy in a striped shirt and overalls was constantly doing something that caused his parents and his next door neighbor, Mr. Wilson, grief.
Since about Friday I have noticed that Princess has been doing things that are mischievous to say the least. My husband and I have taken to watching her like a hawk. At least one of us tries to be in the room with her at all times because we never know what might happen next. It's kind of like having a three or four year old.
Princess has always found her fair share of mischief but lately this has increased even more.
Here are a few examples in just these last two days. She got my biscotti jar that was full of change, out of the laundry area and dumped the contents on the living room floor. Mind you that jar weighed a good 10-15 pounds. She carried it about 50-100 feet without any assistance. A few minutes later she got a bag of Happy Meal toys out of the garage, emptied the contents on the family room floor and promptly began opening the little bags the toys came in. What she didn't know was that I was saving those to sell on Ebay some day. Most, if not all, were complete sets and could potentially fetch some nice pocket change. Not now they won't.  Before Princess and my husband went swimming, she put some Crazy Glue on the cement near the pool area. My husband promptly stepped on it. Which led to us  Googling how to remove Crazy Glue from skin. Later that same day, Princess left the Flubber/ Slime that we had made sitting on top of a piece of paper. Of course it had to be peeled off of the paper. Fortunately for us, the paper was replaceable. Today Princess made a disaster out of the family room while I was at Walmart. My husband said that she had a very nice set up in that room but when he went back to check on her, a few minutes later he came upon a very different scene. It literally looked like a tornado had blown in. Shortly after addressing this and while I was putting away groceries, Princess called for me to get my camera because she wanted me to take a picture of what she had done. She thought it would be funny to put her foot in the Fubber/ Slime that we had made yesterday. I guess I can be glad that: 1) The slime cleans up nicely and 2) That she didn't put on any of my American Girl dolls that I had allowed her to play with earlier. Yikes! The final thing my little angel did was to pull the little hair on one of my toes while I was standing in the pool. Her response: "Well I was just trying to make you look beautiful."
You are probably wondering why the change. The only thing I can think of is that, for reasons beyond my control, we had to stop her ADHD med and try a new one. This med has been one of her constants for almost three years now but the powers that be decided that we should try something else instead. Well after being on the new med for only four days Princess's doctor, my husband and I are all in agreement that she needs to go back to the previous med ASAP!!
Here's a picture of my darling's foot in slime.

VBS Fail!!

-->

     If you have been following this blog for any amount of time, you know that my daughter has had trouble at both home and school with aggression. Her school says that she doesn’t need a highly trained 1:1 aide. After today, I have more ammo that Princess needs a 1:1 aide or a therapeutic day school.

My friend recommended the VBS at a local church (not the church that we attend). She told me that if I told them about my daughter and requested a 1:1, then they would provide her one. Well I did this three weeks in advance of VBS. The director sent me an email saying that they might not be able to provide Princess with a 1:1. She said that myself or another family member might have to come be that 1:1 aide for the week. I am not too keen on this idea.Princess has never done well when I am a helper in one of her classrooms. I also think that can be hard for a child to have to have their parent there.

      Yesterday Princess did OK for the first day. She said she didn’t want to go anymore but we talked and processed on how to make things better. This morning she got up, got dressed and was ready on time. When I got to the church, she freaked out a little because the music was too loud. Then one of the counselors came over and gave her some headphones and her picture schedule of the day’s events. I was thrilled. It looked like the church got it. Wrong!

     A few hours later when I went to pick her up, I noticed that the counselor called someone on her walkie talkie.  I thought maybe it was just a coincidence that it was at the same time as I walked up. Wishful thinking! It was about Princess. The counselor told me that director wanted to talk to me. When I went over to where she was, she told me that Princess had been aggressive. I was officially told that they did not have the manpower to handle her and keep the other kids safe. I was told that Princess could not come back unless she had a family member come. Not gonna happen. I will just figure out something here at our house.

     What frustrates me most is that I expect this from sports leagues, dance teams, Girl Scouts, theater groups etc. but not from the church. The church IMO should be a place of acceptance for all. Heck even movie theaters are having special viewings for Autistic kids. I know that this church did some things to help but obviously not enough. I was told that her special buddy for the week was a teenager.

     The director told me that Princess was only listening to adults. She did not have an extra adult to help out with C. She also told me that she didn't want Princess to miss out on this opportunity but that myself or a family member would have to provide the extra support my daughter needs. She does not see that Princess will get teased if her mommy is there to help. I can work to get her more supports at home, school and at our church but I guess not everywhere. I am still so saddened by this. I wish I could just tell other moms and adults what it is like to have a kid like mine. And so I blog about this experience to educate others on what it is like to raise a high needs child.

One day Mental Illness will be more understood. One day....

BTW- This experience makes me even more grateful that our church has a really good disabilities ministry.

BTW2- I did ask the director to write a letter to whom it may concern telling what supports were in place and even with these supports Princess needed a more qualified aide to help her navigate VBS successfully. Hopefully I can show this letter to the school district in the Fall.

BTW3- My dh said “ Hey that’s kind of what the school said about Princess needing you to go on the field trip with her.”

This is a picture of Princess all ready to go to VBS this morning. (minus the flip flops)