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!!

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     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)

Field Trip Drama and Aha Moment

About three weeks ago I was told by Princess's teacher that Princess could not go on the upcoming field trip unless I went. This was because she has recently had some non compliant issues with the aides. The classroom teacher was not planning on going on this field trip so she felt that Princess might have trouble listening and following directions which is why I was requested to go. I know now that this is discrimination based on the 504 Rehabilitation Act but since I had already promised my daughter that I would go, I went ahead and went. 
I was told by Princess's teacher that I should drive my car down in case Princess had an issue and we needed to leave.
While on the field trip, I observed a few things that I thought were interesting. I am more convinced than ever that Princess would benefit from a highly trained 1:1 aide.
When we got to the place, one of the teachers had all of the kids line up to use the restroom. She asked me to go in with my daughter as perhaps she had been informed that I was there to help with her. Princess had no issues in the restroom. However, about 5 minutes after getting back in line with the other students, she whispered to me that she felt a little tinkle. I went in the restroom again with her. She told me that she needed a new pair of underwear. I did not have a clean pair with me.  I even went to the car to see if there was a pair in her back pack. Upon hearing there was no underwear Princess became increasingly agitated. She even told me that she wanted to go home because she wasn't having any fun on the field trip.  I told her that she had two choices: 1) to ignore the sensation or 2) let it get the best of her and then she would miss out on the field trip. I am happy to report that she let the feeling pass and was able to stay and fully participate.
Later there was a touch tank with sea creatures in it.  Princess told me that she wanted to touch the sea star (AKA star fish) but could only do it if there was a wipee or hand sanitizer available for afterwards. I asked around and one of the teachers found a wipee for us. I told Princess that I had one so that if she wanted to try touching the creatures she could. Well she did eventually try touching the sea star. She totally flipped out and started crying very loudly. I was able to comfort her and calm her down. Within a short amount of time, Princess rejoined her group.
I did notice that Princess did a little bit of pushing and shoving that had to be nipped in the bud.  She wanted to see what was in the touch tank but did not ask a boy to move over so that she could see. She also wandered off (not very far) at least once but I was able to bring her back to the group.
The rest of the field trip went without incident.
I am not sure how even Princess's teacher could have dealt with those things if she had been trying to attend to the needs of the other students.
IMHO, I feel that a properly trained aide could attend to Princess's needs. What would the teacher have done if she had a full blown melt down over the restroom or the touch tank issues?
When Princess was not having her issues, I hung back and did not hover. I tried to let her experience the field trip as fully as she was able.
Some may say that Princess acted the way that she did because I was there. Remember though she was already having trouble at school which is why her teacher told me that I had to go. Her teacher told me that Princess has had trouble on other field trips but that she tries to keep her by her side at all times. Difficult I am sure.
I noticed that Princess did not have any friends so to speak. She has been going to this school since December so I would have thought she would have had one or two little friends.  I digress. That is a topic for another day.

So here's my Aha! Moment:

As you may know I taught for over 23 years.  On occasion we would tell parents that if their child misbehaved, they could not go on a particular field trip. At a previous school I taught at, the sixth grade parents were told that their child might not be able to attend the yearly week long outdoor science camp if they had poor behavior. This was told to parents over a number of years until one principal told the teachers they could not make that statement or rule. At the time I often felt bad for the teacher and the other students who worked so hard to earn the field trip. In my naive opinion I thought that the other kids should not have to suffer and have their field trip potentially ruined because of another child's actions.
Now that I am the parent of one of "those" children, I think differently. If we look at field trips and overnight camps as part of the curriculum, then all children should be afforded the opportunity to go. If a child needs extra support, then a highly trained aide needs to be provided so that the child can access the curriculum.
In his book "The Explosive Child" Ross Greene says "Kids will do well if they can." This means that children don't mean to act up. They don't inherently want to misbehave. He believes that challenging children lack the skill set to make the right choices in many situations. I know this to be true for Princess. She has told me that she doesn't like being mean or annoying but in the moment she doesn't know what else to do. That is why it is crucial for her to have someone who can run interference or set her up for success ahead of time. I believe by not allowing students who chronically misbehave whether it is due to emotional health or other factors beyond the child's control, to not fully participate in the curriculum ( field trips, recesses etc.), we are denying them a Free and Appropriate Education. If my daughter needs an aide for this to be accomplished, then get her one. To me this is not really different than a child needing an aide for toileting purposes. This is also akin to a child needing a wheelchair or a wheelchair ramp to be able to fully participate in the school day. 'Nough said!
End of rant.

Oh No She Didn't!

Yep! She did! Read on to find our what my little cherub who is not quite 9, did.
 I was going to write this post last week. It was going to be titled "There's Always a First Time." Well somehow life slipped away from me this week but this topic came up again last night.
 My darling angel has now taken to lying to get out of school. Grant you even though I taught for over 23 years and have seen it all, I was an almost perfect child. I am not exaggerating. All my mom had to do was to look at me a certain way or raise her voice a little and I would comply. I really never even dreamed of doing anything that would upset my mom. Yes I was totally compliant to a fault. Now I know that Princess is almost the opposite of me. I have come to realize that this is who she is. It is part of her make up or DNA if you will. I should not be surprised when she pulls a shenanigan but I am. Mostly because the things that she does happen much younger than I am ready for. The latest occurred last week and was confirmed last night. I did find out that it was worse than I originally thought.
 No Princess did not commit a crime but it sure feels that way to me. I am probably overreacting but nonetheless I am doing everything in my power to prevent her new trick from being perfected.
I bet you are asking yourself right about now what Princess did that was so horrific. Well she lied and told her teacher that she had thrown up in the restroom at school not once but three times. To Mrs. X's and my credit, we only believed her the first time.
What happened is that Princess was sick with some sort of stomach bug early Wednesday morning. Since she threw up twice, my husband and I decided to keep her home. Our downfall was that we let her watch endless hours of TV. Usually Princess only gets to watch 1 hour of TV a day but since she was ill we figured we would bend the rules a little. Wrong!!
Then on Thursday Princess woke up raring to go even eating a small breakfast. About 1 1/2 hours after Princess arrived at school, her teacher called me at home telling me that Princess threw up and that I should pick her up right away. I felt horrible but I know from experience that sometimes kids get sick a second day. When I brought Princess home, I again let her watch TV but not as much. I even went to the store to pick her up some Bananas, Rice, Applesauce, and bread (for Toast)- You know the old fashioned BRAT diet foods. On top of this I picked her up a few get well things that she could play with including a Monster's University Sticker Book. The first clue that I missed was that Princess ate all of this food and even wanted Jell-o. Later she ate a fairly good dinner as well. She never once complained of a stomach ache.
So along comes Friday. my daughter said she didn't want to go to school but I told her that she had to go because she was no longer ill. Lo and behold her teacher called me after school had only been in session for 30 minutes to tell me that Princess said she threw up again. Mrs. X said that Princess appeared fine to her but she did not want to make the call as to whether or not she should go home. I asked Mrs. X to put Princess on the phone. I told her that she needed to stay in school to learn. I stayed fairly close by the phone the rest of the day just in case the school called again. At the end of the day I received Princess's behavior sheet for the day that stated that she claimed to have thrown up at least one more time that day.
So I figured that this faking it was over and done with until last night. Wrong again! I had been asking Princess to finish her sandwich before she could have some ice cream. She complained that her lungs hurt so she couldn't eat. I told her that was OK but she wouldn't get any dessert unless she ate something nutritious. You know the drill. At one point I had gone to use the facilities so to speak. When I came out, Princess greeted me with " I just threw up in the kitchen sink? Can I still have ice cream?" I found this statement a little odd so I asked her to show me where she threw up. I looked and looked but I could not find any evidence that she had emptied the contents of her stomach. That's when she "fessed up" and admitted that she did not throw up. I guess she felt guilty about this because all of a sudden she spilled the beans that she did not throw up at school either, not even on Thursday.
Some might call me crazy but I still gave her ice cream because she did eat the peaches that we had agreed she would eat in place of the sandwich and she came clean with lots of information. Princess's therapist does this thing called amnesty where if the child is honest and remorseful about something, you can forgive them of the dirty deed. I felt that this qualified as one of those times. One thing that I do have to be careful about is to not use the amnesty card too much.
 After Princess went to bed, I emailed her teacher, her tdoc, pdoc, advocate, principal, and school todc to let them  know that Princess did admit to "lying" about getting sick to her stomach. I want to make sure that all of the adults in Princess's life have all of the facts so that together we can outsmart this smarty pants. In the end I hope that this is the demise of lying to get out of school but I know that it is probably not. The next time Princess is sick, my dh and I will not be so quick to let her have extra privileges. Stay tuned for more Drama Queen adventures.
** Abbreviations: tdoc= therapist, pdoc= psychiatrist, dh= dear husband

Calming Sunday Morning Mayhem

One of the difficulties in parenting a high needs child is getting to church on a consistent basis. Princess used to have meltdowns on Sunday mornings or just would have a difficult time overall. I found out this year that her 2nd grade Sunday School teacher just let her crawl around under the table most of the hour. He let her do that rather than having to deal with a non compliant child. After Princess had a major meltdown at church in October, her teacher gave my  phone number to our Disabilities Ministry Director. This wonderful lady worked with me to come up with a plan for Sunday mornings.

We met with another young lady to talk about Princess and to brainstorm creative ways to make Sunday School a more successful place for Princess and her classmates. In the end we decided it was best to have a 1:1 aide (We call her a shadow.) The plan is pretty comprehensive. I will say it's  like having an IEP only better because they gave me everything I asked for and more. We came up with a chart with target behaviors so that Princess could earn stickers for making good choices.  We figured out where she could go to calm down if the morning was just too stimulating for her.  It was decided that I would pack a snack and some water Sunday mornings since Princess can get really hungry or really thirsty. The aide will take my daughter on breaks if she needs them. She even brings gum as an incentive for Princess to earn at the end of the hour if she needs it.

The aide could not attend our meeting so she and I talked at length over the phone before the first Sunday morning launch of our new plan. She was fully on board and wanted to do whatever it took to help Princess navigate the waters of Sunday mornings. I was asked to call her or the young lady in charge of placing the aides in the rooms if we were not going to make it on a given Sunday. I was told I could even call right up to the minute before class was to start. The aide has told me that it was no big deal if we didn't know until the last minute because she would just find another place to serve for that given morning.

I will say that the plan has had a few kinks to work out. Satan did not want us to succeed. (I personally think he is afraid of Princess. He's afraid because he knows that this is a child with a super big heart who loves God so very much.) Once we got the kinks worked out, the ship has sailed very smoothly.

Over time going to church on Sunday mornings has become the norm not the exception. I don't think we have missed a Sunday in about four months.  It's funny because Princess wasn't supposed to know about her aide. We were kind of doing it on the sly but she is so smart that she quickly figured it out. She's a quirky kid because she has this intense love/ hate relationship with her aide. There are many times when she wants nothing to do with the aide. She will even growl at her. Then there are other times when Princess wants to give her aide a hug.

The aide for her part just rolls with it. It is so nice because she really tries to tell me at least one positive thing that Princess did that morning. This past week she did two things that I thought were pretty amazing. She was the only one out of about 40 kids who knew the previous week's bible story. She was asked to come to the front of the class and tell it. According to the aide she even knew the little details. Pretty impressive for a child who appears not to be paying attention most of the time. She also volunteered to say a prayer near the end of the lesson before the students went back into their small groups. This just makes my heart sing.

Since Princess is going to Sunday School on a regular basis we are seeing other fruits as well. She donated a whole roll of quarters for their current missions project. This is money that she either earned or got from the Tooth Fairy. She is eager to learn bible verses. I will say candy is a great motivator for the verses. She has made another friend who has an aide like her. These are great accomplishments for her. My husband and I are so proud of her.

My proudest moment came this past Sunday on the way to church. The radio announcer was hawking a dating site. He said that choosing who you will marry is one of the most important decisions you will ever make. I turned off the radio and asked " What is the most important decision you will ever make?" My daughter replied "Following God." I almost cried tears of joy right there. She gets it. Between church and home, my daughter is making the connection that God is number one in her life.

One very cool way that I could see God's hand in all of this is who He chose to be Princess's aide. My husband was her son's basketball coach over 10 years ago. She feels like helping Princess is a way to pay it forward. Her weekday job is as an OT working with kiddos like my daughter so nothing that Princess does phases her. I feel so blessed.

My church is just another part of our village that is helping my husband and I to raise Princess.

Here's a link to my church, EV Free Fullerton. Here's more information about Disabilities Ministry at EV Free.

Yes, This Really Happened!!

Hi all,
When I tell people the things that my daughter does and says, I often wonder what they may be thinking.  Are they thinking I make these things up or that it must be rough sometimes? I just try take it all in stride as much as possible. I tell you I never have a boring day with Princess in my life.
What follows are two true stories that happened just yesterday and today.
Story #1:
Yesterday I told Princess to take a shower while I got her dinner ready. I was glad that she didn't give me a hard time because she usually prefers to take baths but I did give her the carrot that after her shower, she could watch TV while she ate dinner. So while I am getting her dinner ready, I hear a little voice calling me to come to the bathroom. I thought maybe she got some shampoo in her eyes but no I was wrong. When I got to the bathroom, she opened the shower door and hands me her sopping wet towel. At that moment I was not a happy camper. I was so upset because it made a huge mess all over the bathroom floor. Later when I had calmed down I asked her why she did that. It turns out that she hates that it takes so long for her privates to dry (esp. her crotch). So she thought that if she covered her privates with a towel then she could avoid this problem. We talked about how she could have used a wash cloth instead if she wanted to experiment, to fix her problem. I also told her the importance of washing down there. Once she told me why she had brought the towel in the shower, I relaxed a bit but I still had her clean up the water on the floor.
Story #2:
Princess’s sleep cycle is somewhat mixed up because of of meds. She has been taking naps after school. Then she still goes to bed on time but has been waking up around 5:00 in the morning. This morning she came into my room at 5:00 a.m. to tell me she couldn't find the dog. I told her to go back to bed because I was sure the dog was still in the house. Then when I went to go wake her up around 7:00, I noticed that her PJ's were on the floor. I told her that I wasn't upset if she didn't have any clothes on but that she needed to get up and get dressed. I ended up having to pull her covers off of her to get her to get out of bed. Lo and behold she was fully clothed (including shoes) and ready for the day. She also informed me that she had already brushed her hair and teeth. I'm glad to know that she was using her time awake so wisely. This is so not like my daughter. She usually waits until the last minute to get dressed.
Wanna know where the dog was? She was asleep on my husband's and my's bed but her coloring blended in with the comforter. Too funny.
By the way- Today I am going to try to keep Princess awake without a nap. Wish me luck. :).