Bloggy Moms

Monday, December 30, 2013

A Day of Firsts

Wow today Princess made some amazing achievements! For most NT (Neuro-typical) kids these might be no big deal but for my sensory challenged, focus challenged drama queen they are huge.
The day started out innocently enough. We were invited to a birthday party in the morning, had plans to go visit the doctor for a flu shot (Only I didn't tell Princess about this until I absolutely had to.) and were going to end the afternoon with a visit to the tdoc (therapist).
On the way to the party, the thought occurred to me that I could possibly leave Princess at the party for an hour. I had an errand to run at the pharmacy. (In case you're wondering, they do know us by name.- I'll write more about this godsend in a future post.) During a break between songs on the radio, I asked Princess what she thought about being left at the party for about an hour. She responded affirmatively. We talked about what to do if she had any problems. She knows the hostess very well and had been to several of her child's parties before. A few minutes after arriving at the party, I politely excused myself but not before making sure that someone had my cell phone number in case an emergency arose. Upon my return an hour later, I found Princess smiling and happily engaged in a friendly game of Capture the Flag. It was brought to my attention that my daughter had a mild injury while I was gone but chose to keep playing even though there were no band aids. Yippee! Score one point for attending a party without mommy or daddy there the whole time. Maybe next time, I can leave her the whole time.
Near the end of the party, I told Princess that she was going to get a flu shot today. I told her that if she did a good job that I would take her to get ice cream. In the past we have had major meltdowns over blood draws and injections. I can recall at least twice where I had to physically hold her with the assistance of 3-4 medical professionals. Today Princess asked me not to discuss the shot with her as it made her nervous. When we got to the doctor's office, my daughter did well until it was time for the actual shot. Then she covered her arms and hid her head. With a little coaxing from me she finally gave the nurse access to her arm. I encouraged her to look at me,  not the needle. That (and a lot of prayer on both our parts) seemed to do the trick. For the first time ever she did not cry while getting vaccinated. Yippee again! Score another point for bravery at the doctor's office.
After a visit to the local ice cream shop, we went to the tdoc's for her weekly visit. We finally headed home for what I thought was going to be a relaxing evening. Princess has other plans. I had reminded her that she needed to pick up all of the clothes on the floor of her bedroom before starting any new activity. Typically she will just stuff the clothes in either the hamper or back in the drawer. Not today. Today she decided to go through her clothes. A purging of sorts if you will. At the end she had more room for her new clothes from Christmas. She also folded up her clothes neatly before gently placing them in the drawers. What's pretty incredible here is that I usually sort through her clothes when she is not home because she has difficulty parting with things. We can end up witnessing a meltdown or she and I can have an argument. Either way it is not a pretty thing. The fact that Princess was willing to go through her things on her own is a huge step for her. Yippee times three for this feat!
As I reflect upon today, I am reminded that a lot of people helped make today's successes happen. I am grateful for our village whether they be doctors, therapists, friends or family. We are blessed that so many individuals are uphold our little girl in prayer as well. These accomplishments might be short lived (and that is OK). For today I am proud and grateful.

Just a side note: If my memory serves me correct, this is the first  children's party that Princess has been able to attend much less been invited to for a variety of reasons. You can read more about my thoughts on birthday parties here

Tuesday, December 17, 2013

Homework Happiness

Yep you read that right! Homework happiness. Today for the first time EVER Princess completed her homework packet in one day. Well all but the Spelling pretest but that is because I insisted that she do that on Thursday. (I know I'm a big ole meanie.)

In the past homework was one of the biggest battles that we had with Princess. Tables were scratched, chairs were thrown, pencils were snapped. Everything that you can imagine happening, happened. We had lots of things happen during homework that one would not imagine as well. None of it was good.

It finally got to the point where I would ask Princess if she wanted to do homework. If she said no, I wrote " Refused to do homework." on her homework sheet for the day. This was not a battle that I was willing to fight on a daily basis. I knew that I would lose. Every. Single. Time.

Even though we asked for the school to stop assigning homework to Princess. They told us that she needed it. It would help her practice the things that she learned in class. They did agree to modify the amount of work but Princess still refused to complete her homework almost daily.

On the rare day that Princess was in the mood to do her homework, she lacked focus and was distracted by everything including the lint in the air. What would normally take 5 minutes to complete, took Princess at least 30 minutes.

Now that everything is going so well for Princess and she is in a period of incredible stability, she almost begs to do homework daily. She has become the "self-starter" that she never was. I can actually be doing something in another part of the house while she completes her homework.

We are still taking this stability thing a day at a time but I am savoring every moment of every minute of every hour. I do hope it continues for a very long time.

I am trying not to worry when the stability will end. Right now I am trying to be "in the moment." To celebrate every victory no matter how big or small. For today it was homework happiness.

By the way, I wanted you to know that I have a Facebook page for this blog. Here is the link: Raising a Drama Queen on Facebook. I'm posting little nuggets there that I don't always post here. I am also finding it is a good way for me to get feedback from others. Check it out, then  "Like" it and share it on your Facebook wall. Thanks for your support.

Monday, December 9, 2013

Musings From My Little Philosopher

 "Stable is a place where horses live." I have seen this quote on a tagline of another mom of a special needs kiddo. Every time I read it, it makes me sad. I am sad because it means that this parent has given up hope that their child can ever be stable. I refuse to do that. I have seen times where my child is stable so I know it is possible.
I have to admit that we had a pretty yucky summer and early fall. There were times when it was pretty awful but I never gave up hope that one day my child would be stable. I somehow knew that with the right puzzle pieces (meds, school, therapy etc.) stability was possible.
Right now we are seeing more stability in Princess than we have ever seen. It really is a lovely thing. I don't know how long it will last so I am enjoying every moment, every hour, every day that Princess has it.
I asked her on Saturday why she thinks she is doing so well. Her response blew me away. For a 9 year old to understand this is remarkable. Here's what she said. "I think it is everyone being so positive with me. I have a lot of help. The pills I am taking help me. Dr. Godsend, my feelings doctor and Mr. Color are all there to help me." Dr. Godsend (not her real name) is her psychiatrist. The feelings doctor, as you probably guessed by now, is her therapist. Mr. Color is a counselor at school. Yep she got it right all of those things are part of the puzzle.
Then today I got this little nugget. Princess and I were in the car on the way home from her appointment. I don't even remember what we were talking about but all of a sudden she said, "I know why I was put here (on this planet.)" I asked her why. This is what she said, "I was put here to cheer people up, to pray for those who are sick and hurting. When I grow up, I want to be rich so that I can give to others who have no toys or food or homes. I want to make good choices from now on. I am so proud of myself." I almost had to stop the car because I was crying tears of joy. Then she said,
"Thank you for helping me so much." Wow! I do not make this stuff up. Incredible!
Like I said before we don't know how long this stability will last but we are definitely grateful for it.
This is what stability looks like. I don't care if my child is famous, gets all A's or is the star athlete. To me if she is stable and she has God's heart, that is what is most important.
I am here to say that stable is not just a place where horses live. I've seen it in my child and it is pretty amazing. 

Monday, December 2, 2013

Tough Choices

I have a confession to make. I am not perfect. I am sometimes selfish. Yes even when it comes to my own daughter's needs. You see sometimes things are going so well that I don't want to risk the possibility of things going south.
Today I had to make a tough choice. Some might say I had to put my big girl panties on.
For a few weeks now I have been putting off this decision. Sort of procrastinating if you will. I had decided that we had had enough changes that our family and Princess in particular would do well without this possible change.
Like all procrastinators my hesitancy came out of fear. I was afraid of what I would hear. Afraid of what the doctor would say. On the other hand if I put it off for much longer, I risked putting my daughter's well being in danger.
What I had noticed, after it was brought to my attention, was that my daughter's hands were shaking. I feared that it meant that the new medication that had brought so much stability to her, and in turn our family, was causing this.
After Princess went to school today and saying a little prayer, I called the doctor to get her input on this. This particular doctor has her messages go to voice mail but she is really good about returning calls in a timely manner. True to her character she called me back in about one hour. I explained the problem to her. She told me that it probably wasn't the new medication but another that Princess has been on for several years. With this particular drug we recently found the perfect dose. At a lower dose Princess's moods seem to not be as stable.
The doctor told me that we would need to decrease the dosage of this tried and true drug. So beginning tonight we did just that.
The doctor is hopeful that with the newer medication, we should not see any changes with the decrease in the other drug  other than the gradual lessening of the side affect. This mom, however, is worried. We'll know in the next day or two what our next steps need to be.
In the meantime I know that I made the right choice by telling the doctor because I was told that the longer we allowed the tremors to continue, the harder they would be to reverse them.
Even though we don't know what the near future holds, I can be confident in knowing that I made the right choice for my daughter by doing what needed to be done. Procrastination did not win here.
Have you ever let your fears win?

Friday, November 29, 2013

Choosing God During the Rough Times

This morning I woke up early. Not my plan as we have a big day ahead of us. Then to top it off Princess did not get to sleep until after 12 a.m. (Long story.) Since I was awake already I chose to check Facebook while I was getting the sleep out of my eyes. That's when I spotted it: a post from another mom of a Special Needs kid. She was feeling discouraged. Just simple things really but for us who have Special Needs kiddos and deal with so much already, things can be magnified. It can be easy to let that attitude of discouragement eat at you. She was trying hard to be positive but needed some additional encouragement. I offered up some words of encouragement. Then I ended by saying that I would be praying for her.
I literally felt compelled to come write this post instead of trying to go back to sleep. Somehow I knew that everything will be alright if I don't get more sleep but that I needed to share how I look for God in the rough times. Some of you might know how it is when it comes to writing, you've got to get it out while the thoughts are swirling otherwise you will forget them or lose the opportunity.
I often wonder where the heck I come up with some of my thoughts because to me they sound like they are coming from a much wiser, older woman. Then I look back at my life and think "Yeah well I have lived quite a few lives in my short time here on earth." With that being said I do feel qualified to impart some wisdom.
One of the things that I struggled with early on when we first got the diagnosis for Princess was "Why me?" I have already had more than my fair share of pain and suffering. I was a good kid. I never did anything to really deserve a less than perfect child. Then God reminded me (and continues to remind me) "Why not you? I chose this special child for you to raise because I knew that you and your husband would be the perfect parents because of the trials and adversities you have faced." I have learned to embrace my calling. I consider it an honor to have been entrusted with this very special child.
The other day I was at a meeting with other moms of kids with special needs at my church. It was a small group so we went around and told a little bit about ourselves and our child. I mentioned some of the struggles that we had had recently with Princess. In response to this, one of the other moms said, " I bet you cry yourself to sleep at night." I wasn't sure how to reply to that because my answer would have taken time away from other peoples' sharing. At the time, I just gave a short answer and moved on.
 As I reflect on the Facebook post from earlier today and the comment from the lady at the meeting, I can't help but see how the two are related.
To me it all boils down to my attitude. I can choose to stay in bed and cry "Woe is me!" I can choose to compare my child to other children and become bitter. I can choose to continue to ask "Why me?". Or I can choose to look for God's blessings in the midst of our struggles. I choose the latter.
How do I do that? Well, it ain't easy. It is something I work very hard at. Every. Single. Day.
I look for the hand of God and the face of God everywhere. You know what? Because I choose that, I often find it win places where others might miss it.
I see God's hand when I am looking for the matching sock while helping Princess get ready for school. God knows that we could have a meltdown on our hands if just the right sock is not found so He helped me find it just as I was about to tell Princess that she'd have to choose another pair of socks or wear her shoes without them.
I see God's face in my sweet friends. They encourage me and do not pass judgment. They don't try to tell me how to parent my child because they know that I have to parent my child differently than they do. They do simple things like make my child a PBJ instead of insisting that she eat what everyone else is eating. They know that because of her sensory issues and anxiety, she might not be willing to try something other than her old standby. They check in on me and let me know that they are praying for me just when I need to hear their voice.
I see the hand of God in the details of providing just the right people at just the right time. The care and compassion that we have experienced from professionals on some of Princess's roughest days just blows me away. Sure we have seen some people who were not very kind but those people are few and far between. When we encounter them, I try to have the mindset of "What would Jesus do?". Sometimes it is to stand up to them or to let their superiors know but other times it to just let their words and actions fall like water off of a duck.
It's interesting because this summer we had a less than stellar experience with one of our community helpers that really bugged me. This individual was able to see our daughter and our family several more times. He started to see and understand my daughter's issues were through no fault of her parenting. Kind of funny how God worked that one out.
Right as I am typing this it is beginning to rain. I had planned to go to an outdoor mall today with my daughter and her BFF. I can look and be discouraged or I can be encouraged that that means that we are going to have a low key day. This is probably what Princess needs after a busy day like yesterday. We can still have fun today. It will just be different.
I see the face of God in my dear husband daily. He is the perfect mate to travel this road with. He is so gentle and understanding. I am the one who gets caught up in the moment. He brings me back down and helps me to focus on the little things. I am so blessed that he chooses to walk this path right beside me.
Trust me. My life has many ups and downs. I can choose to let those ups and downs waiver my faith in God or I can choose to look for His handiwork on a daily basis.
What are you going to choose?

Tuesday, November 26, 2013

Reflections on Thanksgiving Thoughts From a Mom of a Special Needs Kid

I know that many of you have seen or read about people on Facebook posting one thing a day that they are thankful for for the past month or so. Heck maybe even some of you reading this may be thinking of your thankful thought for today or tomorrow. I did not participate in this new ritual this year. I'm not sure exactly why. I do know one of the reasons was that I was afraid I might miss a day. So instead I'd like to tell you about a few things/ people that I am blessed by.

First of all I must thank God for all of the blessings in my life. While that might sound like some Christian lingo. Like you expect from me. Let me explain. Even though this past year, even the past five months have been incredibly difficult for my family, we know that God has been with us every step of the way. He brought a new friend into my life who has been an invaluable resource and encouragement to me. He gave us a new educational advocate. We liked the former one fine but she was just too expensive. Our new advocate is affordable, close by and best of all she has a child like my daughter. She has walked many miles in my shoes. She is able to help my husband and I navigate the rough waters of the school system. As I have mentioned previously, our church has an incredible disabilities ministry. It is through this ministry and the staff and volunteers who run it, that my daughter has been able to find a place where she feels loved and accepted on Sunday mornings. I am eternally grateful to God for this.

Princess has been to no less than six elementary schools in her short education, four in just the past year alone. We have lived in the same house since her birth. We recently were told that she would be at the same school for the remainder of the school year. When I heard that I wanted to shout "Hallelujah!" from the rooftops and mountain tops. This is something to be grateful for indeed.

The school that Princess is currently attending serves kids like her who need more structure with a loving staff. They work on academics and behavior goals with lots of positive reinforcements. At first Princess hated this new school, but in the last few weeks she seems to be complaining less. I'll take that as a sign that she is adjusting. I am grateful for this new school and the staff who work there.

I am thankful for medical professionals who take the time to show my family and I love and patience. There was one time this summer when things were not so nice but the nurses showed Princess grace when she did not deserve it. They understood that her illness was making her make choices that were not pleasant. They could have easily given in and been harsh but instead they took the high road. There was one nurse in particular who shared with Princess that she had a son about her age. She loved on her as if my daughter was her own. We have often wondered if we would ever get a chance to thank her in person. Well you know what? God knew that was a desire of our heart so recently he gave us the chance to do just that.

Princess was at the medical facility where this nurse works getting a cut looked at. After the doctor fixed it up, we headed out to our car. Who was out in front of the building? Why none other than our angel of mercy! Our family got to thank her in person. We were able to tell her how much her kindness meant to us. As she was walking away to get back to work, Princess ran up to her and asked to give her a hug. It brings tears to my eyes just thinking about it.

Even though Princess is a friendly outgoing child, she struggles with maintaining friendships. Those few friends that she does have mean the world to her. I think that they mean more to her than the average child. The friends she does have have to be able to forgive her and show lots of patience. Princess has three friends who are a blessing to her and in turn a blessing to us. One is a friend she doesn't see much but who is very dear nonetheless. Another is a boy that she met at church. They enjoy just hanging out whenever they are able to. The third friend is my best friend's daughter. I am grateful as I see this friendship blossom. They are so good for each other. This friend remembers the not so good times but chooses to focus on the good times that the two friends share. I am told that this friend and her mother pray for our family every morning on the way to school. We are blessed indeed!

I must conclude this list by mentioning my husband, AKA Princess's dad. He has had to shift his thinking about what a dad should teach his daughter. He has has to learn a whole set of acronyms and jargon. He has attended many IEPs. He is the one who is able to redirect Princess when she gets agitated. He loves Princess the way a child should be loved, unconditionally. He did not sign up for being a parent of a child with special needs but he is embracing it. He is choosing to let it make him a better man.  Those of you who do not have a child with special needs may not be aware of this but many dads of these children throw in the towel or are in denial about their child. Princess's dad is not one of these men. For this Princess and I are grateful.

At the end of the day I can choose to focus on the negative, the hardships we have experienced this past year or I can look for God's blessings. I choose to actively seek His blessings on my family's life.

May all of you have a blessed Thanksgiving. Keep looking for God's blessings in your life no matter how big or small.

Saturday, October 26, 2013

Being Robin Williams' Mom

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!

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?

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.

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.

Wednesday, August 14, 2013


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:

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.

Saturday, July 27, 2013

The System is Broken

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

Sunday, July 14, 2013

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.

Tuesday, June 18, 2013

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)

Wednesday, May 29, 2013

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.

Friday, May 24, 2013

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

Tuesday, May 7, 2013

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.

Thursday, May 2, 2013

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. :).

Wednesday, May 1, 2013

Dining Out Drama

I remember when C was two and we went on a family vacation to Legoland. On the last day of our trip we decided to go to Ruby's for breakfast. C got so agitated by the noise and activity that she literally could not keep quiet. She threw what we then thought was a typical two year old tantrum. My husband and I spent our meal taking turns with C outside.

Then there was the time when Princess was 5 and we went out to eat with my MIL. Princess decided to crawl under the table numerous times but the best part was when she dunked her grandmother's roll in her coffee. Ever the gracious lady, my MIL, made the best of it but I was so embarrassed.

Over the years we learned that it was too stressful to take Princess out to eat at any sit down restaurant with wait service. We were relegated to fast food establishments or Princess's favorite, Soup Plantation, a serve yourself buffet style restaurant. 

This brings us to my husband's recent birthday dinner. My husband chose The Cheesecake Factory to dine at. I knew we would have to wait for a bit to be seated. I came fully prepared. I packed a back pack full of sticker books and an iPad to keep my daughter occupied while we waited. Since Princess gets really hungry and thirsty at a moment's notice, I even packed juice and a snack. Lucky for us we were seated in twenty minutes. Princess wanted to sit next to the birthday boy and so I obliged her. He helped her to choose what she wanted to eat. Shortly afterwards the lovely waitress took our order. Of course Princess wanted to chat it up with the lady. I tried to explain to her that the waitress had other tables to wait on but ever the gracious host, the waitress obliged Princess and talked with her a bit.

When our appetizers came, Princess took her turn and even waited for them to cool down. During this time my husband and I were trying to have a conversation. Typically Princess doesn't like it when she is not the center of attention and tries to thwart our efforts to carry on adult conversations. Not this time, our daughter kept herself entertained while we talked.

Pretty soon our meal came. Princess is a pretty picky eater so I didn't have high hopes but my husband and I told her that if she didn't eat a good meal she wouldn't get some cheesecake. Well she surprised us and ate a decent meal.

When we were done eating, we decided that the birthday boy should get his own slice of cheesecake while Princess and I shared one. In the past Princess hasn't done well with any form of sharing (toys, food etc.), but lately she has been doing much better in this area. I was still holding my breath when the cheesecake came because things can turn on a dime in our little world. Well someone else must have taken my daughter because she actually shared her cheesecake with me while her dad ate his own slice. She never even complained once about having to share with me.

What surprised me even more about this whole dining out experience, was that Princess acted like any other neurotypical  8 year old child would. She did not go under the table. She did not lie down when she was done eating. She ate her food nicely and was polite the whole time. We did not have to leave because of an embarrassing meltdown.

In the past this has not been the case at all. This goes to show that persistence pays off.
I think one of the keys for us has been that we are trying to sit as a family at the dining room table at least three times a week. This is where we practice our table manners instead of doing this in the restaurant.

Yea for mom, dad and Princess!

Here's the birthday boy with his number one fan!!

Saturday, April 20, 2013

The Queen of False Alarms

Hi all,
You know that time where someone pulled a prank on you? The one where you wondered if you were being Punk'd? Well that's been me lately. I'm not sure if it's because I am new to this SAHM thing or because Princess is smarter than all of us or because shall I dare say the school is not following through like they should before calling me to come down to the school.
The first time it happened I was miffed because my day was interrupted to come pick up Princess from school. We worked so hard to get her to be going to school full time again after a loooong break in her schedule. I was at home probably doing laundry or washing the dishes. (Two chores that I never seem to finish or be caught up on for long.) When all of a sudden my cell phone rang. Thanks to lovely Caller ID, I could tell right away that it was Princess's school. They were calling to tell me that she wasn't feeling well and to pick her up. As it turned out my daughter's teacher had been out for a few days and she was missing me. On top of that one of her medications was making her sleepy so the substitute and the school assumed she was ill. As soon as we walked out of the office, Princess perked up.
After this incident, I informed the school that from now on I wanted to only be called if Princess had a fever or was throwing up. I know from experience that my daughter can be a hypochondriac but apparently her new school does not.
About three weeks later I received another phone call from the school. This time they told me that Princess needed a new pair of underwear. They told me that she told them that she had tinkled in them. I asked if they could check because in the past she has had a problem where she thought she had tinkled but it was just her sensory issues making her think this. The office manager told me that because of privacy laws and health laws they could not.  I was informed that Princess could not return to her class unless she had clean underwear. So I quickly ran to the school to bring new underwear and a few spares for future tinkle episodes.
Yesterday's crisis took the cake. This time Princess's teacher called me to say that Princess started her period. What?  Yep you read that right, her period. Princess refused to put on a pad. Her teacher felt that she would feel uncomfortable  without a pad so I should come and get Princess.
I totally freaked out. I mean my daughter is only 8 1/2. I had seen some of the tell tale signs but I had not talked about puberty or periods to Princess. I felt like the loser mom.
So I gathered some clean clothes and made my way to the school once again. On my way there I called my husband and told him. I asked him to call our daughter's therapist because she always has good insight into these things. She is a great resource for my husband and I since Princess is such a high needs child. Then I called our pediatrician whom we adore.  I called her since Princess was on the very young side to be having Aunt Flo visit on a monthly basis. Of course the doctor was on lunch break so I left a message with her exchange. Then I called my BFF who has a 21 year old daughter so I know she's been through this before. Thankfully my BFF was able to take my call and comfort me a bit.
My biggest concern was that I would mess up my reaction and "the talk" horribly causing my daughter to be scarred for life. My BFF told me that she would be available for Princess to talk to if I needed her to. God bless her!
When I got to the school office, Princess was sound asleep in the nurse's office. My first thought was that this whole thing had really taken it's toll on Princess. Poor kid. After I woke her up, I again asked her if she wanted a pad to which she shook her head. Then we gathered her things and walked to the car. Once there I started asking her about what happened and what she told the teacher.  From the way that she was talking I questioned whether or not everything had been fully investigated before the teacher jumped to the conclusion that my little cherub had started her period.
Princess said that she wiped her bum after a BM and noticed blood on the tissue. She wasn't sure if it had been in the front as well.
About this time, the pediatrician called back. She gave me some things to look for. She also told me that if Princess had indeed started her period that we would have to get her hormone levels checked. Oh joy! More blood work. I told her that from talking to Princess that I thought this may be a false alarm.
After I got off of the phone, I took my daughter to the restroom where we were going to have lunch. (Hey this is a big day! We have to celebrate! Besides I hadn't had lunch yet when all of this commotion began.) Thankfully for us, there was no one in the restroom. I checked things out so to speak and questioned Princess a bit more. It seems she was a bit constipated so she strained. So that is what happened.
This was a big relief to me because I wasn't ready to deal with monthly visits from Aunt Flo just quite yet. Just getting Princess to wear a training bra was a huge undertaking that involved lots of drama. I can't even imagine what having to wear a pad will be like for my texture sensitive daughter.
I do however have to continue to encourage Princess to eat more fruits and vegetables. She also needs to drink more water.
Later that day, against the advice of our family therapist, who had called me back while we were eating;  I took Princess to the bookstore so I could get some books on the topic of periods since this is now part of my daughter's vocabulary. After carefully looking over The Care and Keeping of You: The Body Book for Younger Girls and The Care and Keeping of You: Journal 1 for Younger Girls, I purchased them along with a couple of books that Princess wanted. Both books are published by the great folks at American Girl. Last night, before bed, we read a little bit about bras but that was all that Princess was interested in for the time being.
The reason that the therapist did not want me to get the books was because she was afraid they might be more than what Princess is ready for. Since she is not really interested in them, I can read aloud the parts that she is interested in and that are relevant to her. The publishers also have a book for older kids.
As I said at the beginning of this post I am not sure if all of these false alarms are because I am new to this SAHM thing or that the school is not fully investigating Princess's claims. I think the school has never seen the likes of a kid like Princess. I think I need to help them out a little so that my daughter can stay in school more. I don't want to be Negative Nellie but Princess could still end up outsmarting us all.
Can this cute kid be getting ready for puberty? Please Dear Lord not yet!

Sunday, April 14, 2013

Birthday Party Drama

Most school age kids expect to get invited to lots of birthday parties during their formative years. Fortunately my daughter doesn't know what she is missing. When Princess was in preschool, it was protocol to either invite the whole class or as many as you could to your child's birthday party. Then in Kindergarten everything changed for us. Princess was only invited to one party the whole year. ( That party as detailed below, turned out poorly.) Then in first grade Princess was only invited to one party as well. We chose not to attend that one as it was at a local karate studio. Part of the party would be dedicated to enticing the children to sign up for classes. Then in second grade Princess had even fewer invites. Yep that means zero. This school year, has been a repeat of last year in the number of invites but I believe it is partly due to the fact that Princess changed schools mid year. I can also attribute it to the fact that there are fewer students in Princess's current class thus fewer opportunities for party invites. Hey a mom can dream can't she?
Since Princess wasn't getting many invites and I wanted her to experience parties, I started to bring her to my students' parties that I was invited to. This worked somewhat OK until she sort of aged out of being invited to 5 year olds parties at the ripe old age of 7. Let's face it, I felt bad that my daughter wasn't being invited to many parties so I wanted to make up for that.
There was of course a reason that Princess was lacking invitations to parties (and play dates for that matter). Princess lacked social skills to get along with her peers. She was an odd bird. Kids tend to shy away from kids that are not like them.
Remember the party that Princess went to in Kindergarten? Well it was at a bounce house place called Pump it Up. Since I was a working mom, I didn't know many of the moms and dads who were there. They knew each other but didn't reach out to me. At one point during the party I almost left because people were talking about Princess right in front of me. Saying that she was aggressive and mean etc. They either did not know that I was her mother or did know but didn't care. I wanted to grab Princess and run straight out the door but instead I stayed and tried to be gracious.
Over the years I have found that Princess does not do well in these bounce house type parties. I think there are too many kids and too much activity. Princess gets too excited and over stimulated. Then she has a hard time calming down.
My daughter has had difficulties at her own birthday parties as well. We try to invite a mix of kids from school, church, and family friends. She likes to have a pool party since her birthday is in the summer. There have been lots of times that the party goers are enjoying themselves while my sweet girl is in her bedroom upset over something. I always feel like I am on the brink of telling everyone to go home but then at the last minute Princess pulls it together. We are blessed because our friends are very understanding and just go with the flow. I bet if I ever had to pull the rip cord on a party, my dear friends would still leave quietly without any hard feelings.
I have learned over the years not to plan too much for Princess's party. We don't do a big BBQ. We get Little Caesar's Pizza, a veggie platter and cupcakes. Princess likes to decorate but we keep that even low key as too much will set her off. We also keep the party time short because the longer it goes, the more likelihood that she will get irritable.
I am a little sad that Princess doesn't get invited to more parties. I do wish that more parents would be more understanding of Princess. Princess has told me a few times that kids have told her that their parents do not allow them to play with her at school. It does feel at times like Princess is an outcast. I am proud of my daughter because most days she just carries on and tries to be the best person that she can be. For that I am grateful.

This is Princess at her 7th birthday party at American Girl Place in LA. Last year we went back to doing the pool party thing.