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?
Bloggy Moms
Friday, November 29, 2013
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.
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!
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?
Tonight Princess and I grabbed a bite at McD's. The cashier screamed at Princess and kept jerking her head around. She apologized to my daughter several times for scaring her and told me that she thought Princess was cute. Later I told Princess that I thought this young woman had Tourettes as her odd behaviors kept happening. I really felt for this gal. Turns out my daughter did too. She told me that she worried that this gal might not have any friends because of her behaviors. I explained what tics were and how the gal could not control them. I asked Princess if she would like to pray for her. She told me that she already had. Made me want to cry right there. Then I told her that maybe when there were no customers, she could go over and tell the cashier that she had prayed for her and that she knew what it was like to be different. Princess did so and even called her over to speak to her privately so as not to embarrass her. I would love to share this story with those professionals who told me that my child lacked empathy and compassion.
Suffice to say that over 50 people "liked' this story. It also garnered many comments from friends who either know my daughter or have experienced something similar in their lives. That being said, I decided to fill in the missing details. I specifically want to share with you, my readers, what the circumstances were that led some professionals ( ie. administrators) to come to the conclusion that my child lacked compassion.
When Princess was in preschool, she would occasional get aggressive with other children. We were blessed in that the school decided to let her continue there but the director did warn my husband and I that she saw something very wrong with our child. There was one time when Princess bit another child's finger quite hard. Since it did not appear that Princess had remorse, this administrator said that she lacked compassion and empathy. Later when I talked with my then 4 year old daughter about the incident, she told me that she didn't know what to say. She was kind of embarrassed. She also told me that the other child had asked her to bite her finger.
A year later when Princess was in Kindergarten, we started to see more aggression at school and at home. One day the playground supervisor told her to get off of the jungle gym. In her mind she had only been playing for just a short while so she didn't think it was time to get off. In her frustration she kicked several of her classmates as they walked by. The principal of the school suspended her for this action and for refusing to get off of the jungle gum. At our parent meeting that day, this principal also told us that she felt that our daughter lacked compassion.
That brings me to the day at Mc Donald's. I have seen Princess display aggression on numerous occasions but that doesn't mean she lacks compassion. She has shown me and others that she does have compassion and empathy for that matter. She does care about how others feel. One thing that is hard for her to understand is how her actions can affect others. I'm not sure where this comes from or what it called. Nonetheless I do know that my daughter cares very deeply for others.
So there you have it. My "Behind the Headlines" story. I hope you enjoyed it.
Stay tuned for future blog posts- Crying Wolf or Raising Robin Williams? Which one do you want to read next?
Saturday, September 14, 2013
Phone Merry Go Round, Lies, and Hope
Hi all,
I know that I have been sporadic at best about posting here. There is a reason for that. We've had a rough summer to say the least. The start of school has not been any better.
Here's a glimpse into what I/we have been dealing with for the last few weeks.
Yesterday morning I got on the phone with the intent of talking to someone in charge at XYZ Insurance about the sudden change in Princess's treatment plan. That sure as heck did not happen. Instead I was told to call this number and that number. No one wanted to take responsibility or even knew who I was supposed to talk to about discharging Princess too early from the Purple Spot Intensive Center or (PSIC). Finally I got the number of the ABC Department. This is the team that sends out the Purple Response Team when Princess has a really bad flare up. They are the ones who also have the lovely in home crisis team that we found to be a complete waste of our time.
The gentleman who I talked to could barely speak English but somehow I was able to understand him. He told me that there was an Imelda (Not her real name) who worked there who indeed may have written a letter about Princess's care to the PSIC . He asked me if I wanted to talk to her but by that time I was so ticked, it would not have been pretty. This gentleman, who we'll refer to as TD from now on, told me that it was the doctor who made the decision to discharge Princess. I told him that it was my understanding that Imelda had written a letter that at the very least influenced the team at the PSIC to discharge Princess. He told me that that was incorrect. He stated again that the doctor made the decision. Round and round we went. About the only good thing that came out of that conversation was that TD told me that we have every right to use our own medical team. We should not be made to feel that we have to use theirs. I told him that if this is the case, then he needs to let his employees know this and to stop bullying us.
Later when we went to go pick up Princess at PSIC, I was recounting this story to one of the nurses. Who should happen to be sitting there but the PSIC's doctor!!! He confirmed what I already believed; that they were told that XYZ Insurance would not pay for more care for Princess at their facility. There is a letter that was emailed or faxed to PSIC but I do not have it yet. Princess's case manager at PSIC was on another line and could not talk to me. I will be trying to pursue this Monday. I am beyond irked. I was flat out lied to by XYZ Insurance staff not once but multiple times Friday morning as I tried to get answers.
In the midst of the flurry of my phone calls today, Princess's case manger through the school district called. She set up a meeting for Princess to meet the director of her new school on Monday and start on Tuesday. She told me that if Princess has problems accessing the curriculum at this school, that the IEP team can call an emergency meeting to look at other options. Regardless, there will be a 30 day IEP meeting at Ocean Coastal Academy (Not its real name) to see how Princess is doing there.
When we went to pick up Princess, I was discouraged because Princess was still in her night gown and it was 12 p.m. I told her that she needed to put on clothes before we left. That only took 45 minutes.( Insert smirk here). Then as we are exiting, Princess reaches under her tank top and pulls out her undergarment. My husband just took it and put it in one of the bags without missing a beat.
All of the way home Princes was talking non stop and I thought we'd have a repeat of last time. (We had to return Princess to PSIC in just over 24 hours because the Purple Spots were still there.) Thankfully we made it home without incident. It was funny because about 15 minutes before we arrived home Princess blurts out "Are we there yet? My bum is getting sore." I about busted a gut trying to stifle my laugh.
When we got home, I let Princess rent a movie on iTunes so that my husband could run a quick errand and I could take a breather. We had no major episodes/ incidents tonight. Princess did a few impulsive things and was a little non compliant but we did not see any Purple Spots creeping in.
We have found that since we never no when the Purple Spots will appear or when Princess will become impulsive, one of us has to be in the same room as she is just about all of the time. Makes for one tired mommy and daddy.
So hopefully the rest of the weekend will go well.
That's it in a nutshell. When things settle down a bit, I hope to be able to post/ write more often but for now I am just happy to have a little reprieve from our roller coaster life.
I know that I have been sporadic at best about posting here. There is a reason for that. We've had a rough summer to say the least. The start of school has not been any better.
Here's a glimpse into what I/we have been dealing with for the last few weeks.
Yesterday morning I got on the phone with the intent of talking to someone in charge at XYZ Insurance about the sudden change in Princess's treatment plan. That sure as heck did not happen. Instead I was told to call this number and that number. No one wanted to take responsibility or even knew who I was supposed to talk to about discharging Princess too early from the Purple Spot Intensive Center or (PSIC). Finally I got the number of the ABC Department. This is the team that sends out the Purple Response Team when Princess has a really bad flare up. They are the ones who also have the lovely in home crisis team that we found to be a complete waste of our time.
The gentleman who I talked to could barely speak English but somehow I was able to understand him. He told me that there was an Imelda (Not her real name) who worked there who indeed may have written a letter about Princess's care to the PSIC . He asked me if I wanted to talk to her but by that time I was so ticked, it would not have been pretty. This gentleman, who we'll refer to as TD from now on, told me that it was the doctor who made the decision to discharge Princess. I told him that it was my understanding that Imelda had written a letter that at the very least influenced the team at the PSIC to discharge Princess. He told me that that was incorrect. He stated again that the doctor made the decision. Round and round we went. About the only good thing that came out of that conversation was that TD told me that we have every right to use our own medical team. We should not be made to feel that we have to use theirs. I told him that if this is the case, then he needs to let his employees know this and to stop bullying us.
Later when we went to go pick up Princess at PSIC, I was recounting this story to one of the nurses. Who should happen to be sitting there but the PSIC's doctor!!! He confirmed what I already believed; that they were told that XYZ Insurance would not pay for more care for Princess at their facility. There is a letter that was emailed or faxed to PSIC but I do not have it yet. Princess's case manager at PSIC was on another line and could not talk to me. I will be trying to pursue this Monday. I am beyond irked. I was flat out lied to by XYZ Insurance staff not once but multiple times Friday morning as I tried to get answers.
In the midst of the flurry of my phone calls today, Princess's case manger through the school district called. She set up a meeting for Princess to meet the director of her new school on Monday and start on Tuesday. She told me that if Princess has problems accessing the curriculum at this school, that the IEP team can call an emergency meeting to look at other options. Regardless, there will be a 30 day IEP meeting at Ocean Coastal Academy (Not its real name) to see how Princess is doing there.
When we went to pick up Princess, I was discouraged because Princess was still in her night gown and it was 12 p.m. I told her that she needed to put on clothes before we left. That only took 45 minutes.( Insert smirk here). Then as we are exiting, Princess reaches under her tank top and pulls out her undergarment. My husband just took it and put it in one of the bags without missing a beat.
All of the way home Princes was talking non stop and I thought we'd have a repeat of last time. (We had to return Princess to PSIC in just over 24 hours because the Purple Spots were still there.) Thankfully we made it home without incident. It was funny because about 15 minutes before we arrived home Princess blurts out "Are we there yet? My bum is getting sore." I about busted a gut trying to stifle my laugh.
When we got home, I let Princess rent a movie on iTunes so that my husband could run a quick errand and I could take a breather. We had no major episodes/ incidents tonight. Princess did a few impulsive things and was a little non compliant but we did not see any Purple Spots creeping in.
We have found that since we never no when the Purple Spots will appear or when Princess will become impulsive, one of us has to be in the same room as she is just about all of the time. Makes for one tired mommy and daddy.
So hopefully the rest of the weekend will go well.
That's it in a nutshell. When things settle down a bit, I hope to be able to post/ write more often but for now I am just happy to have a little reprieve from our roller coaster life.
Friday, August 23, 2013
Mornings Are a Bear
My husband and I are blessed that Princess gets picked up at our door step every school morning by a District provided bus. This is a little perk that the District provides because Princess's home school doesn't have a program for kids like her. I'm not gonna lie here. I love this little perk. Read on and you'll see why.
The bus arrives at our door step at approximately 6:50 every school morning. This means that Princess really should be ready on the curb when it pulls up. In order to facilitate that happening, her alarm goes off at 6:00. Yes I know that is early.
To make it easier for Princess to get up in the morning, we try really hard to make sure she is in bed, lights out, by 8:30 every week night. But gosh darn it 6:00 still comes whether we like it or not.
When I set the alarm at night, I make sure one of Princess's favorite songs or playlists are set to go off. Usually it involves Michael Jackson. ( Princess is actually sad that she will never get to meet Michael Jackson here on earth because she loves his music so much. For some reason it resonates with her.- But I digress.) At about 6:05 or 6:10 I go in Princess's bedroom to encourage her to wake up. Typically that involves turning off her fans and turning on the lights. She takes some medication in the morning so I give her that with a glass of water in hopes that once she sits up to take it, she will get up out of bed and get ready. Right now at this time of year, that is a complete fantasy on my part. After the medicine is swallowed, Princess lays back down and plays possum until the last possible moment. This may sound drastic but I sometimes have to resort to taking Princess's sheet away to motivate her to get up. When she is cold and uncomfortable, she knows one of the quickest ways to warm up is to get dressed.
I find it humorous that the one thing that always succeeds in getting Princess up out of bed is her bladder. When that happens, she bolts out of her room with lightening speed but not before taking her school clothes with her to the bathroom.
This past Monday Princess missed the bus because she refused to get out of bed. It was funny though because shortly after it left, she got up, got dressed and we made it to school before the final morning bell rang.
On Tuesday I implemented a new strategy. I told her that if she made the bus then she would get 30 minutes of TV time after school. That did the trick. She once again waited until the last possible moment before getting out of bed but she worked hard to be ready for the bus. On this particular day, she was dressed except for her shoes when the bus pulled up. The District has a policy that children must wear shoes before boarding the bus so Princess put her shoes on quickly and boarded the bus with her shoe laces flapping in the wind.
This same tactic worked well for me on Wednesday so I upped the stakes for Thursday. I told her that not only did she have to be dressed but the dog had to be fed and her shoes needed to be tied before the bus pulled up.
This morning, Friday, I kept the expectations the same as the previous day. Princess did not meet my expectations but she was fully aware of them. As she was running to catch the bus with her laces flapping in the wind she said to me " Can I still watch TV after school?" My goal is to get her on the bus with as little drama as possible so I responded with " We'll see when you get home."
The interesting thing about all of this is that I have a very detailed chart that we used this summer during summer school. It tells Princess all of the tasks she must complete and how long she has for each one. I haven't used the chart since school resumed because for Princess the goal right now is to get on the bus. You can bet that I will start the chart again, maybe even next week, but right now we are taking baby steps.
Getting back to the beginning of the post where I said that I love the perk of the school bus, by the time Princess is actually ready for the bus, it is just so nice to be able to say "Your bus is here." Princess knows the bus is not going to wait for her. By the time that the bus arrives I am spent and need a little time to recharge. Having to take Princess to school means that my fuse gets a little shorter. That's why having transportation provided for my daughter is a blessing.
Can anyone relate? What do your mornings look like? Feel free to post comments directly on this site.
The bus arrives at our door step at approximately 6:50 every school morning. This means that Princess really should be ready on the curb when it pulls up. In order to facilitate that happening, her alarm goes off at 6:00. Yes I know that is early.
To make it easier for Princess to get up in the morning, we try really hard to make sure she is in bed, lights out, by 8:30 every week night. But gosh darn it 6:00 still comes whether we like it or not.
When I set the alarm at night, I make sure one of Princess's favorite songs or playlists are set to go off. Usually it involves Michael Jackson. ( Princess is actually sad that she will never get to meet Michael Jackson here on earth because she loves his music so much. For some reason it resonates with her.- But I digress.) At about 6:05 or 6:10 I go in Princess's bedroom to encourage her to wake up. Typically that involves turning off her fans and turning on the lights. She takes some medication in the morning so I give her that with a glass of water in hopes that once she sits up to take it, she will get up out of bed and get ready. Right now at this time of year, that is a complete fantasy on my part. After the medicine is swallowed, Princess lays back down and plays possum until the last possible moment. This may sound drastic but I sometimes have to resort to taking Princess's sheet away to motivate her to get up. When she is cold and uncomfortable, she knows one of the quickest ways to warm up is to get dressed.
I find it humorous that the one thing that always succeeds in getting Princess up out of bed is her bladder. When that happens, she bolts out of her room with lightening speed but not before taking her school clothes with her to the bathroom.
This past Monday Princess missed the bus because she refused to get out of bed. It was funny though because shortly after it left, she got up, got dressed and we made it to school before the final morning bell rang.
On Tuesday I implemented a new strategy. I told her that if she made the bus then she would get 30 minutes of TV time after school. That did the trick. She once again waited until the last possible moment before getting out of bed but she worked hard to be ready for the bus. On this particular day, she was dressed except for her shoes when the bus pulled up. The District has a policy that children must wear shoes before boarding the bus so Princess put her shoes on quickly and boarded the bus with her shoe laces flapping in the wind.
This same tactic worked well for me on Wednesday so I upped the stakes for Thursday. I told her that not only did she have to be dressed but the dog had to be fed and her shoes needed to be tied before the bus pulled up.
This morning, Friday, I kept the expectations the same as the previous day. Princess did not meet my expectations but she was fully aware of them. As she was running to catch the bus with her laces flapping in the wind she said to me " Can I still watch TV after school?" My goal is to get her on the bus with as little drama as possible so I responded with " We'll see when you get home."
The interesting thing about all of this is that I have a very detailed chart that we used this summer during summer school. It tells Princess all of the tasks she must complete and how long she has for each one. I haven't used the chart since school resumed because for Princess the goal right now is to get on the bus. You can bet that I will start the chart again, maybe even next week, but right now we are taking baby steps.
Getting back to the beginning of the post where I said that I love the perk of the school bus, by the time Princess is actually ready for the bus, it is just so nice to be able to say "Your bus is here." Princess knows the bus is not going to wait for her. By the time that the bus arrives I am spent and need a little time to recharge. Having to take Princess to school means that my fuse gets a little shorter. That's why having transportation provided for my daughter is a blessing.
Can anyone relate? What do your mornings look like? Feel free to post comments directly on this site.
Wednesday, August 14, 2013
Back-to-School?
I have been thinking about this post all week. You see because of things that are beyond my control, my daughter did not start school on Monday like so many other children in Fullerton did. Since I became a SAHM I did not go back to school as a teacher for the first time in 9 years (Only the second time in over 20 years!). The only other time that I did not go back to teach in the Fall was the year that Princess was born. I was still on maternity leave until November of that year.
I am by nature a very positive and upbeat person. Sometimes this can be a detriment. This time, however, I must face reality and realize that this stinks. My daughter and I did not get to experience all of the first day of school joys with the rest of her school mates. Oh I know that we can make our own special memories when she is able to start school. We will take pictures. I will pack a special lunch. She will pick out a cool outfit to wear. Heck we may even celebrate the first day back with a special treat when she returns from her first day. For now I will try to forget all that she missed out on.
So what do I do when I need a kid fix? Well I borrow another kid for the day. My favorite kid to borrow is my BFF's daughter. She is Princess J. She is such a cool kid. On Monday I picked her up from day care and surprised her by taking her to the mall and spoiling her rotten. Those were the words of her grown up big sister. The whole time we were out there was no drama, very little whining and a whole lotta gratitude. She and I were able to talk about her day, her new teacher and her friends.
I know this may sound crazy but it is so nice to be able to take a child out and not have to worry about melt downs, wandering off or aggression. Don't get me wrong. I love Princess and we have done some pretty cool things together but I can pretty much count on her having problems wherever we go and whatever we do so those times out are becoming less and less.
Tomorrow Princess will start school. You can be sure that I will try to make as special as possible but I have to downplay of it otherwise those darn purple spots will return. You see too much excitement and stimulus aggravate them.
By the way if you were wondering what those purple spots were, they are aggression fueled by a chemical imbalance. Hopefully we are closer to getting all of this under control.
Photo courtesy of: http://www.dreamstime.com/stock-photos-schoolhouse-image9044943
I am by nature a very positive and upbeat person. Sometimes this can be a detriment. This time, however, I must face reality and realize that this stinks. My daughter and I did not get to experience all of the first day of school joys with the rest of her school mates. Oh I know that we can make our own special memories when she is able to start school. We will take pictures. I will pack a special lunch. She will pick out a cool outfit to wear. Heck we may even celebrate the first day back with a special treat when she returns from her first day. For now I will try to forget all that she missed out on.
So what do I do when I need a kid fix? Well I borrow another kid for the day. My favorite kid to borrow is my BFF's daughter. She is Princess J. She is such a cool kid. On Monday I picked her up from day care and surprised her by taking her to the mall and spoiling her rotten. Those were the words of her grown up big sister. The whole time we were out there was no drama, very little whining and a whole lotta gratitude. She and I were able to talk about her day, her new teacher and her friends.
I know this may sound crazy but it is so nice to be able to take a child out and not have to worry about melt downs, wandering off or aggression. Don't get me wrong. I love Princess and we have done some pretty cool things together but I can pretty much count on her having problems wherever we go and whatever we do so those times out are becoming less and less.
Tomorrow Princess will start school. You can be sure that I will try to make as special as possible but I have to downplay of it otherwise those darn purple spots will return. You see too much excitement and stimulus aggravate them.
By the way if you were wondering what those purple spots were, they are aggression fueled by a chemical imbalance. Hopefully we are closer to getting all of this under control.
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