Bloggy Moms

Monday, December 12, 2016

5 Tips for Staying Positive During the Holidays

The other day I was talking with a dear friend. She knows that our family has had it rough this year. My daughter had a brain tumor removed earlier in the year, we made a big move as a family and have had some financial struggles as well. She wanted to know how I stay so upbeat in the midst of all of these trials. I told her that I have my moments and even days where I get sad, but that I do try to keep as positive as possible. I also shared with her these 5 tips that help me especially during the holidays when I can easily find myself in the doldrums.

1. Look for ways to help others who may not have a very Merry Christmas.
Recently, our church had an Operation Christmas Child shoebox drive. My daughter and I filled a shoebox with fun items from the Dollar Tree for a girl who might not otherwise get any presents. A local bagel shop also had ornaments on their tree with children's names and wishes written on them. We picked a little 2 year old boy. He wanted Legos and some clothes. It was super easy to find these items. We'll soon wrap them up and drop them off at the bagel shop. It helps knowing that I am teaching my daughter to make someone else's Christmas special.

2. When the worries of the world keep you up at night, count your blessings instead of sheep.
I have a lot on my mind these days. On those nights when I can't seem to fall back asleep,  it really helps to think of all of the things I am thankful for. Sometimes all I can think of are the essentials like my family's health, a roof over our heads, food, clothes and people who love me. When you get right down to it, there are so many people who don't even have these basic needs met. I am blessed indeed.

3. Look for ways to make someone's day. It could be as simple as giving a compliment to a stranger like my daughter enjoys doing. It could also mean putting spare change in the Salvation Army bucket. Sometimes it's as easy as calling a friend who might need to be cheered up. It doesn't have to cost much.

4.  Have an attitude of gratitude. Look for blessings as you go about your day. Maybe today was the day your child made it to school on time. Maybe you realized all of the people who help you make it through the day. At last count, my daughter has 15 professionals who are helping her. That means I am not alone. I have help.
I also have an alarm set on my phone. It goes off at the same time every day. It reminds me to find joy in my day every day. There are many days when I need this reminder. It's often a way for me to reset my day. One time I was so stressed out. I happened to call a lady looking for answers. In the middle of our conversation, my joy alarm went off. I told this lady the reason for the alarm and proceeded to tell her that for that day she was my joy.

5.  Make Christmas simpler if you can. For me that means that instead of buying everyone on my list gifts, I try to make a few gifts. Those gifts are made with love. Homemade gifts also stretch my dollars further. I've also found that I'm no longer wishing for that special gift. I'm too busy enjoying giving to others.

Christmas can make many people depressed. I've discovered that when I take my eyes off of my challenges, I enjoy the season a whole lot more.  I hope that you'll find one or two of my ideas helpful. Have a blessed Christmas.

My family a few years back. They bring a lot of Christmas joy to me.

Thursday, November 24, 2016

Blessings Abound if You Look for Them

In the wee hours of the morning when I couldn’t sleep, (Thanks menopause.), I began to think of everything that I am thankful for. The first thing I thought of was that our house that’s closing escrow very soon. Then I shook my head and said, “No that’s not right. That’s material.” When I cam to my senses, I remembered what I am really thankful for is that the Lord spared my daughter this year. The brain tumor and even the surgery to remove it, could have ended her life. Whether my daughter is making me smile or causing more glitter strands on the top of my head, I will never take for granted that my husband and I were given the gift of her on this earth for awhile longer.
Today I’m thankful for my husband who realized his lifelong dream of becoming a teacher this year. When his first assignment left him with little time for our family, he sought out one that would be closer to home and was a better fit for his personality. He is such a good husband and father. As a child I did not have a very good role model in that department. I tell Princess all of the time that she is blessed to have a father who loves her so much. Every little girl in the world deserves a father like him.
My friends and family have been a huge support to my husband and I this year. One example of this is when Princess and I  recently visited with my older brother when we were in San Francisco for the day. He made sure that we found a restaurant that she would enjoy eating at. I assure you this was no small feat. Throughout Princess's crisis this year and after it, the outpouring of love from friends and family has been amazing. I have a few close friends who have stuck by me even when I could not be the kind of friend that they deserve. Even though I may not say it, I’m grateful for you.
I have many online friends who I may never meet. Some of these are in support groups that I belong to while others are fellow bloggers. Your encouragement to me is immeasurable. I hope that I can return the favor in some small way.
Moving to Northern CA was a much bigger task than I thought it would be. Packing up our house was huge but not as huge as starting a new life in really a foreign land to all of us. 
Now about the house, we couldn’t have asked for a better realtor. She has gone above and beyond the call of duty. She knew that our priority was moving to Northern CA so she rolled up her sleeves to put forth all of the necessary work to help us sell our house.
When we first moved up here, I knew we would need a new church. We have been blessed to find a church that loves on us. I look forward to making more connections at our new church home in the coming year.
We also needed a new school and new medical professionals for Princess. Finding the right school was a challenge. I do believe we have found one that will be perfect for our girl. I have also been working really hard to get my daughter all of her services (15 at last count.) We’ve been blessed to have found some pretty incredible people. Two of these are her OT and PT who work exclusively with children. Yesterday, Princess was able to play the Wii at therapy while strengthening her muscles.  I love the creativity of these therapists. So much fun!
Today, my Knight, Princess and I will enjoy a quiet Thanksgiving dinner together. We’ll be thinking of our loved ones near and far. We’ll also be thinking of and thankful for our Lord and Savior who bestows all of these bountiful blessings on us.

Happy Thanksgiving! 

My family and I Easter Sunday, just a few weeks before we discovered my daughter's brain tumor. 
Credit: My husband

Thursday, October 27, 2016

The Effect Bullying Had on my Daughter with Special Needs

My daughter is a very sensitive child. She has a warrior inside of her, but she's still very tender. Following a recent move, I was able to see how delicate she really is. 

When school began in September, our new school district assigned her to a school they had just opened up. It was a school for children like my daughter or so they said. We soon found out that most of the children attending it had more severe behaviors than my daughter. They were very aggressive and hostile. After a few weeks at this school, my daughter began showing signs of distress not unlike those of a child being bullied. I advocated on my child's behalf, but to no avail. I really felt like my words were falling on deaf ears.

My daughter has a lot of needs both medical and behavioral. I often have to pick her up early from school or drop her off late due to her various appointments. On an early pick up day, a school administrator brought my child to the office. He informed me that Princess had been hit in the nose with a pencil. She was so distressed by the incident, that she missed over an hour of instruction while she calmed down. I asked questions to find out more details. I was told very little as no one saw anything.

Additionally,  on numerous other occasions daughter also told me that she felt threatened by several of the boys in her class. They called her nasty names and used racial slurs. She tried to inform the staff as to what was happening, however, they were often breaking up fights in the classroom or campus so they were not able to help her out. 

The Friday following the pencil incident, I pulled my daughter out of the school. That Monday I attended an emergency IEP meeting to make my request formal. The school district and school agreed this placement was not a good fit for my daughter. I've been working with the school district ever since to find a more suitable school. I believe I've found one, however, they are not ready to accept my child. They want to make sure everything is in place before she starts there.

In the meantime, my daughter has been through intensive therapy to help her deal with what she encountered at her previous school. Most days she has been doing extremely well. There are days though where she doesn't know what to do with all of her emotions.

Last week, we were in the car returning home from an appointment when I noticed she was angry with me for what appeared to be no reason. So I asked her about it.:

Me: I don't understand why you are upset with me. We've had such a good day. Have I done something to make you angry?
Princess: I feel like I am with you all of the time. I wish there was someone else I could talk to.
Me: Well you will see you dad soon and you can talk to your therapist tomorrow. I feel like there is something else.
Princess: I don't know how to say it without making you mad.
Me: Just say it.
Princess: I'm scared. What if all of the boys at my new school are mean? What if they treat me like the boys treated me at my old school?
Me: Well, when we toured the school, they seemed really nice and friendly.
Princess: What if that was just fake? What if they are really mean on the inside? (At this point the tears started flowing)
Me: Oh, baby! I'm so sorry you feel this way. I do think that this new school has a caring staff who won't let that happen. They told me they have a plan in place so you won't get bullied.
Princess: Mom?
Me: Yes.
Princess: I think I need a hug. Could you pull the car over and give me a hug?

At that point, I pulled into a neighborhood, stopped in front of a cute house with a basketball hoop and got out to give my daughter the longest hug in awhile. We both cried together. She cried because she was scared and relieved. I cried because my girl was so sad. My heart ached for her.

After our crying party ended, as I got in the car, I told my girl how proud I was of her for expressing her feelings. I also told her that I now know that when she is anxious and stressed, she displays anger. This knowledge can help us in the future.

As I work with my daughter's team to help her become emotionally strong, I hope and pray that she never has to endure what she went through this September. I believe the school she attended for just a few short weeks was ill equipped to handle her needs. In some respects, they did try to help. Unfortunately, it was not enough. When I first brought my concerns to their attention,  denied that anything was wrong. I kept trying to figure out a solution until it became apparent that the solution was to pull my child out of that school.

In all of this I have learned that my daughter will survive. In fact, I think she'll come out being a stronger person.

As I drove off on that day not too long ago, I reminded Princess that not all boys are mean. Not all boys are bullies. Her BFF, pictured below, is one of the nicest boys. We're pleased to have him (and his family) in our lives.

Princess and her best friend two years ago

Friday, October 7, 2016

Inclusion Isn't For Every Child, But It Should Be

Yep, I said it. I am not in favor of inclusion for my child. I know there are many parents who feel just the opposite of me. They want their child to be loved and accepted for who they are. Their desire is that other typically developing children embrace their loved one. I'll be the first to admit that I too wanted that for my daughter at one time. I still do, but at a different level. My husband and I tried for years to make our child fit into the round hole of public school. Heck, even private school, if we'd had the money, would have been something we desired. The truth of the matter is that is never going to happen.
My daughter, who I love and adore to pieces, is quirky. All of her challenges: autism, bipolar disorder, ADHD, OCD and sensory processing disorder; make her stand out among other children her age. I've worked really hard to teach my daughter how to behave so she doesn't stand out, so she fits in. The only problem is she doesn't see the importance of fitting in. It's too hard for her. I know other educators and professionals have worked with her on this as well. She gets frustrated when we work on changing her before she's ready.
Her peers for their part, are not being taught to love and accept my daughter where she is at. It's just not something that parents and educators typically teach those without challenges. Sure they are taught to not look at the skin color, cultural differences or even those with outward signs of disabilities. My daughter doesn't look different than her peers. She certainly acts differently though.
When we've pushed her to make the changes she is not ready for, she shuts down. It affects every part of her life from school to home to church.
Since 4th grade my daughter has attended a school where there are children like her.  It's the norm rather than the exception. She's still the quirkiest one in the bunch, but she is loved and accepted for her differences. The staff at the school are trained on how to nurture her strengths.
The only place where I place my daughter alongside he typically developing peers is at church. Even there, the other kids tolerate her. I don't get the sense that they are truly accepting her. No one goes out of their way to include my girl. I've never seen one of them invite her over to join in on the fun. There is a disconnect. I tell my daughter to look for opportunities to be a part of a group. Ask someone their name etc. Yet time and time again, I don't see this being reciprocated with her peers. I've never witnessed a child inviting my child to play a game or join in on a conversation. It's too difficult and uncomfortable for them. Maybe my daughter isn't the only one who needs to be pushed out of her comfort zone.
Parents of typically developing children tell me how this is such a difficult age for all kids. They are all struggling to find their place.  That I need to be more understanding.
On the rare occasion where my child is included and made to feel welcome, it happens because there is either a sibling of a special needs child present or a parent of a special needs child facilitated it.
In the past when my child attended a public school or even participated in an extra curricular activity aimed for mainstream children, things often ended poorly. She spent her days crying in class. I was constantly being spoken to by the adults in charge. It seemed like my daughter and I were the ones who needed to change. I was told  that I needed to teach my child how to belong. How to act like everyone else. What if instead mainstream parents and adults taught children to look for those who didn't fit in? Those on the outside of the circle would be a rare sighting.  As a society, we have a long way to go before all differences are embraced. I'm reminded that it's been over fifty years since Rosa Parks started the civil rights movement.  All these years later,  society still has a way to go before people of color are accepted everywhere. As far as acceptance for those whose differences are not as evident, I'm in this battle for all for the long haul. My daughter is counting on me.
For now, the only inclusion that I'm pushing for is at our church. One day, things will change.  I believe society is capable of it.

Tuesday, July 5, 2016

How My Childhood Did Not Prepare Me for Parenting My Child with Challenging Behaviors

I admit it. I was somewhat prepared, but not by my childhood. It was the childhood of my older brother. He gave my mom a run for her money. Everything she stood for, he did the exact opposite. I watched him give my mom a lot of gray hair and wrinkles. I often worried if my mom, who wasn't entirely stable, would end up back in a psych hospital after all of the antics he pulled.
I was two and a half years behind him. I vowed not to repeat his mistakes. Instead I was the exact opposite. When my mom said, "Jump!", I answered with, "How high?" I'm what some would refer to as a goody two shoes. I did not drink, smoke or do drugs. During my teen years, when I wasn't at youth group or working on school work, I was my mom's constant companion. I'm the one who stayed home and watched TV while both brothers were out doing God knows what.
Imagine my surprise when God decided to give me a very high spirited child. When I say, "Jump!", she questions, "Why?" Thankfully, she's still too young to participate in many of the same activities that my brother did. I hope and pray she does not. Still I brace and prepare for the what ifs. I would be naive to think that my daughter is going to skip that phase entirely.
I've seen her question my authority due to her Oppositional Defiant Disorder since she uttered her first words at the tender age of one. Over the years I've seen this behavior wax and wane depending on her stability. Currently, my husband and I are seeing an upswing in defiant behavior. At age 2, 4,  and 6; we could pretty much pick her up when she displayed this behavior. As she gets older, that's impossible to do.
I often think to myself, "How the heck am I going to survive puberty and adolescence with this child?" I try to remind myself of a few things:

  1. Breathe- Just like when she was little and I found myself having to take mommy time-outs, I need to do this when I feel like I am losing control.
  2. Ask the Experts-For us that is those who have gone before us. Those who have successfully launched their children into adulthood. I can also consult parents of special needs children to see what works for them or just to commiserate with them. Another group whose brains I can pick are professionals. We are blessed to have a team working with us. They often think of things that I have not.
  3. Find More Experts if Needed-During the tumultuous years of ages 7-9, I saw a therapist on my own on and off. I think it's time to consider that again.
  4. Pray, Pray and pray some more- I've seen firsthand the power of prayer. It often gives me a Person to vent to when I have no where else to turn.
  5. Take AA's motto to heart- One day at a time. Some days it is one hour or even one minute at a time. If I live in the moment and not worry so much about the future, I will have less anxiety.
Of course, I'm not perfect. I don't have all of the answers. I'm sure I'll make plenty of mistakes. I'm hopeful though, that with the above 5 techniques in place I will survive my daughter's tween/teen years in spite of not being a rebellious tween/teen myself.

Please comment below if you have any additional tips that will help me.

Credit to Johnny Diaz-"Breathe"

You can also follow our journey on Facebook at: Raising a Drama Queen: Adventures with Autism and Bipolar Disorder.

Wednesday, June 29, 2016

My Daughter: The Compliment Queen

The other day I was watching the TV show "America's Got Talent." They are in the auditions phase so there are really good acts and ones that are not as good. One that the producers chose to highlight was of a man who gives out compliments. That's his shtick so to speak. Unfortunately, he will not be making it to the next round. The judges were not impressed.
As I watched his act, I couldn't help but to think of my daughter. I affectionately call her The Compliment Queen. She feels it is her civic duty to compliment small children and ladies.
When she was around five or six, I tried to curb this a bit by saying, "It's OK if you don't compliment everyone." Her response was, " But mom how will they know their (purse, doll, dog etc.) is amazing if I don't tell them?" I was dumbfounded, and still am today, as to how to answer that question. Instead, I keep close tabs on her. I've also given her a few rules.  One of these is that she make sure it is alright with me before approaching the  intended recipient of her compliment.
My whole week was made yesterday when she made a little girl's day. We were finishing up eating at a fast food restaurant, when a young family arrived. I noticed that their daughter had a disability, but I wasn't certain if my daughter had. Still, I wondered what compliment she was ready to hand out. I could tell that she wanted to engage this family in a conversation, however, they were at the drink station filling up their drink cups. My daughter glanced at me before going over to them. I explained that it wasn't the right time. Thankfully, she complied and finished her own taco. Soon it was time for us to leave. I'd completely forgotten about this young family. My daughter, on the other hand, had not. After throwing her trash away, she slipped over to them and declared, "Excuse me, I just wanted to tell you that you are rocking those hearing aids." That phrase was music to my ears. I think the family was a little shocked that my daughter, who looks perfectly normal, would say something so kind. What they didn't know is that my child has her own disabilities that are often invisible to most people.
As we exited the restaurant, I made sure to give my Compliment Queen her very own compliment for brightening that family's day.
One day my daughter may not give as many compliments as she does now. That will be a sad day in my book. In the meantime, I will appreciate and applaud her efforts. May there be more humans in the world like her and the Compliment Man.

Tuesday, June 28, 2016

I Think My Get Along Button is Broken Too, But That's OK

Being the parent of a child with complex needs is hard work. It is often draining and exhausting. I am like most humans on this earth, I crave social interactions. I desire to have meaningful relationships. I, like my daughter with autism and bipolar disorder, want to have friends who understand me. I have known for years that my daughter's "get along button is broken." She can make friends just fine. Keeping and maintaining those friendships, however, is difficult for her.

I'm discovering that I am more like her than I want to admit. In the past year, two of my very closest friendships have ended. I wish I knew what to do differently. Some of it, most of it, is beyond my control. Since my daughter has more needs than her typically developing peers, we have to miss out on many events where I can foster those friendships. Just this spring a dear friend of mine invited me to her son's play. We bought the tickets and looked forward to going. The morning of this event was a difficult morning for my girl, so I contacted that friend and we stayed home. My friend was gracious and understanding. From her viewpoint, that was no fun as I am sure she really wanted to see us. She was a proud mom and wanted us to celebrate her child's success with her. Then in April my daughter had a brain tumor that required my full attention for several weeks. I had to miss out on being a support to another friend who had foot surgery. I wanted so badly to be able to cook for her and take her to doctor's appointments. It never happened. For that I am sad. Still another friend had to go out of state to attend to her extended family. I really wanted to help her pack or bring her a care package. That didn't happen either. I am failing my friends.

 I'm not failing my daughter, though. Often I am on the phone, attending doctor's appointments, emailing my child's teacher or figuring out insurance snafus. When my child is home, I cannot leave her unattended. Although she loves people, peopling can be exhausting for her so we adjust to her schedule and her needs.

I have been told that my focus is too narrow. I only talk about my kid. I have become something that I never wanted to be; one of those parents who talk incessantly about their children. It has become ad nauseam.

Here's the thing though: If your child had cancer, wouldn't you do everything in your power to save them? Wouldn't you stop at nothing to find a cure? This little being who I love with every fiber of my being is depending on me to help her.

If I abandon her so that I can nurture my friendships, then I am a failure as a mother.  I am sorry that I cannot be the kind of friend that my friends need me to be. I'm not sorry that getting my daughter launched for life, leaves little time for anything else.

Society will pay for the alternative. If I don't step up and become a warrior mom, my daughter will look elsewhere to get help. She could very easily end up as a pregnant teen or a drug addict. She could even end up committing suicide. My due diligence is to raise her up to be a productive member of society not one who is a detriment to it. Unfortunately, this requires more of me than the average mom.

I'm not going to stop trying to be a good friend. I just might not be able to be the kind of friend my friend wish I was.

If you are a friend to a mom of a special needs child, please know that she is grateful for your friendship even if she has trouble showing you that. She may never be able to reciprocate that friendship equally. Thanks for understanding that and for loving her in spite of this.

One thing that I have learned from my daughter after all of her failed friendships is to never give up. There might be someone just around the corner who I have just not met yet.

Wednesday, June 8, 2016

To the Hospital Staff Who Performed Miracles of Kindness

In  late April of 2016 my daughter underwent emergency brain surgery for the removal of a brain tumor. This story is about all of the incredible people at CHOC Children's Hospital who helped my daughter, and our family, survive that scary time.
When I first learned  that an MRI  detected a mass on my daughter's brain, I was in shock and disbelief. I literally felt that all of the air in my body had just left me. The nurse practitioner who was delivering the news of the brain tumor was so compassionate. At a time when I felt so bad for not noticing all of the warning signs earlier, this medical professional said, "You did a good thing Mom. Many parents would not have taken her to the doctor when you did." She really lifted my spirits and gave me the courage to make all of the twenty million phone calls to family in friends over the next few hours.
Less than an hour after my conversation with the hospital's nurse practitioner, I was told that the neurosurgeon wanted to see me. My husband was at work that day so I talked to him by myself with no support. He was kind, gentle and compassionate as he explained where the mass was and what our next steps were. I honestly did not expect him to be telling me that he and his team would be removing part of my daughter's skull in order to operate on her brain the very next morning. He exuded so much confidence as he described everything in detail. This kind soul did everything he promised he would and then even a bit more. My daughter was in the hospital eight days. He saw her every single one of those days. One day in particular stands out. It was a Sunday. I know from past experience that many doctors don't see their patients on Sundays so it came as no surprise when my daughter's neurosurgeon, Dr. McMiracle, sent one of his partners to check on my girl. This doctor was a bit concerned with how my daughter was progressing.  He felt she might require a CT scan or another MRI. He left my child's bedside in order to call Dr. McMiracle. In less than 30 minutes, this wonderful doctor appeared before our very eyes. He double checked on his star patient, but ultimately declared that she was doing just fine. Our family is grateful that this doctor truly cares about his patients and goes the extra mile.
Another group looking out for my daughter was a team of certified nursing assistants (CNA's) assigned to care for her during the first few critical days following her surgery. These "sitters' stayed in her room and attended to her as if she was their own child.
 The first CNA who was assigned was not a good fit for my daughter. She did not know how to calm a frightened child and only added to my child's confusion. Thankfully, she was only with us for a few short hours on her first day post surgery. The next CNA was completely the opposite. She had experience working with children with autism. She knew exactly what to say and do to help her. She established protocol that all of the CNA's who followed her kept. It was so cute to hear each CNA tell the next CNA how things were done. Little tips and tricks that seemed to make caring for my child's unique needs a little easier.
My daughter on the road to recovery

One of the last CNA's came in my daughter's room like a bull in a China shop. She started cussing, but quickly realized where she was and stopped. I almost found the charge nurse to ask that this CNA be reassigned to another patient. Something told me to give this young lady another chance. I'm so glad that I did. Before her arrival my daughter had been having trouble finding the right words to communicate. It appeared that she had some speech delays after her surgery that may have been due to swelling on the brain. My husband and I had been told that a speech evaluation would be given to her the next morning. When they did come the following morning, my daughter was a different child. It turned out that in the middle of the night when my daughter was having trouble sleeping, the young CNA asked my daughter questions and sang tunes from "Frozen" with her. Overnight she had a language explosion. It was miracle. I'm so thankful that I decided to give this young, insightful CNA another chance.
Still another CNA took it upon herself to get my daughter up and moving. She was able to get her to walk down to the play room. Later on she took her out for some fresh air, her first in a week. I believe she was also instrumental in getting my daughter to actually eat something. Granted it didn't stay down, but it was a start.
My daughter has been home just over a month now. She's made remarkable progress in walking and talking during this time. She has built upon the efforts of the hospital staff. My family and I are grateful for the care that she received while she was a patient at CHOC Children's Hospital. So many of the staff there really went above and beyond the call of duty. We are indebted to them.

The first wheelchair my daughter used. I have a similar one in the trunk of my car that sits mostly unused now.

Monday, May 30, 2016

The One Fear That I Have For My Daughter who has Biploar Disorder

As May 2016 draws to a close and with it Mental Health Awareness Month, I wanted to share with you a big worry that I have. It's not being hospitalized again  for behaviors. We've dealt with this before. It was scary the first time. We'll know what to do when/ if my daughter needs this again. It's not even if The Wonder Drug Amantadine, stops working. I'm convinced that Dr. Wonderful, Princess's psychiatrist, will find something else. It may take awhile to achieve stability, but it will happen. It's not even that my child may need to live in a group home as an adult. I've resigned myself to the fact that she may never go to college.
My greatest fear is that my daughter may one day have to live at a residential treatment facility. Since California does not currently have any for high flight risk patients, Princess would most likely have to go out of state. In 2013, when my daughter was so unstable, we were seriously considering an out of state placement. We're so thankful that with a therapeutic day school and an amazing combination of medications, Princess has been stable for almost three years.
I know of at least three families who have had to place their children in residential treatment facilities. Two of these children are currently out of state. It's gut wrenching hearing their stories.
I worry if attending one of these facilities may do more harm than good. I worry that no one will love on my daughter like her father and I do. I worry that she'll be at one for a very long time.
Some people may ask why I am worrying about something that may never come to fruition. I say that I know the realities. My daughter is still in puberty. In the next few years as her hormones potentially throw the chemicals in her brain off kilter, instability and a placement in a residential treatment facility are very real possibilities. I've seen and heard of this happening with many children with mental illness. Sometimes there are even typically developing teens who require an out of home placement.
I do cling to the hope of one family that I know of whose daughter is doing very well. This mother shared with me how hard it was having her child out of the home. It was very necessary for the rest of the family's safety and well being. Now this young lady is making incredible strides. The RTC she attended gave her the tools that she needed.
For today, I live in the present. I'm choosing to focus on the fact that my daughter is doing well. She's learning how to advocate for herself. Her school has been giving her the tools to help her live well with mental illness. For that I am grateful.
P.S. I know that my friends whose children are at RTC's would covet your prayers. Thanks.

Sunday, April 24, 2016

When a Walmart Employee Stood Up For My Daughter

My daughter and I encountered an amazing champion the other day. I've been wanting to write about our experience, but I am a little embarrassed that we even needed her help. You see my daughter has bipolar disorder. Normally she runs and jumps like most other children her age. Recently, one of the medications that we have been giving her to stabilize her moods, has caused her to have weakness on the right side of her body. The most noticeable aspect of this is that she walks with a limp. We're trying to get rid of the offending drug. Since it will take awhile for the effects to lessen, she lives with the limp for now.
She's pretty good about not letting the limp get in her way. I have noticed that it gets worse when she is tired or has walked a lot. Knowing this I was not surprised when she asked me if she could use an electric cart at Walmart on a recent shopping trip there. Since we hadn't used one before, we asked the women at customer service if she could use one. I was polite and explained that my child had a limp. After looking at us quizzically, both employees said no. They told us that the carts were for adults. Upon hearing, this my daughter skipped off to the in store McDonald's to order a snack.
When we got there, I was stopped by a Walmart employee. She had heard the whole exchange a few minutes previously. She felt that we were discriminated against. She informed me that the carts were there for anyone who needed them. Then she confirmed this with her manager. I made sure to get his name so that when we went back to get the cart, I could tell the women at customer service who it was who gave us permission to get one.
My daughter and I placed our order at McDonald's and waited for it at the counter. The next thing I knew our new hero was riding up on the cart. It wasn't enough for her to tell us she felt we had been wronged. It wasn't enough for her to confirm with the manager that my child was entitled to a cart. No, this kind and caring lady went further out of her way. She secured and brought the cart to my child.
My heart was singing at the actions of this compassionate woman. She didn't need to hear our story. She believed us and wanted to make things right.
Once we got our food, my daughter happily climbed aboard her new ride. Since my mom had had to use a cart like this in her later years, I knew how it operated. I gave my daughter a quick tutorial and we were off.
My daughter was so happy to not have to worry about her leg slowing her down. I stayed close by her assisting her as needed while we shopped. At one point, the cart stopped working so we flagged down another employee who called guest services to bring another cart. I don't think the employee who initially denied my child the cart, wasn't too happy to bring out a replacement cart. She did though.
When we were done with our shopping, guess who was waiting to ring us up? Yep, our new friend.
While I was finishing paying for our purchases, I chatted a bit with our helper. I thanked her profusely as I explained why we needed the cart. She wished us well and sent us on our merry way.
I'm not certain how long my daughter will have this limp. I hope it won't be permanent. Whatever the case, I'm glad there our people like the employee at Walmart, who go out of their way to make sure my daughter has what she needs.
  My daughter happily motoring along

Friday, April 8, 2016

How I Helped My Daughter with Autism Feel at Ease at the Eye Doctor's

As part of my daughter triennial IEP, she was given an informal vision test by the school nurse. Sadly, but not surprisingly, she did not pass the far sighted portion of it. This means that she has trouble seeing things that are up close. We were told that she would probably need reading glasses.
 One of the reasons that I am not surprised that my daughter needed glasses is because she comes from a long line of spectacle wearers on both sides of her family. I myself have worn glasses since I was in fifth grade. For many years I needed to wear them to correct astigmatism and  for distance, nearsighted. In the last few years, my eye doctor added farsightedness. So yes I officially wear bifocals now. My husband has worn reading glasses for many years. He is now wearing his glasses most of the time. Many of my daughter's extended family also wear glasses.
I thought that being around all of these vision impaired people would make my daughter see that it was OK or even cool to wear glasses. We are not weird or odd. I was mistaken in this belief.
Like anything that is new or unfamiliar to my child, she became anxious about the thought of wearing them. The idea of the office visit itself brought on a lot of anxiety. My daughter is not alone in her feelings of overwhelming anxiety. Anxiety is almost synonymous with autism. My daughter will worry herself sick when presented with a new situation. Sometimes just thinking about something will overwhelm my girl.
The idea of getting new glasses made my daughter fret like a wet hen. She expressed to me on several occasions how nervous she was. Fortunately, I have a few tricks up my sleeve.
It just so happened that I needed to get my eyes checked for a new pair of glasses. I cannot go to my own eye doctor's appointment with Princess since I need to keep an eye on her so I scheduled mine the day before hers. While there I noted that there were two new optometric assistants whom I had not met before. I made it a point to get to know them. I had a plan.
Finally, the day of the exam came. After my daughter got home from school, I encouraged her to put on some comfortable clothes, not pajamas, as that is her go to outfit at home. I also made sure she got a snack.  She grabbed a book as well. All  of these actions were to make her life easier as well as mine. 
Once we arrived at the eye doctor's, we had to wait a bit.  On the way to the office, I had told Princess about the two new office members. I told her that one of them thought I was funny. I also let her know that the other one, a gentleman, seemed kind and helpful.Princess knows both of the doctors, a married couple, from church. She'd been to their office before, however, it had been awhile. When it was time for her to go back an office staff member brought Princess back. She wanted me to go with her so I did. I knew that once she saw Dr. R, she'd warm right up to him. That's exactly what happened. Once I saw that my daughter was at ease, I quietly excused myself so that I would not become a distraction. I also wanted my daughter to have a sense of independence. After the exam, Dr. R. informed me that Princess did indeed need a pair of reading glasses. We discussed easing her into wearing them by only having them at home. I suggested that after she saw how much they helped her with homework and reading at home, she would then want to use them at school as well.
Soon it was time for my little fashionista to pick out her glasses. The female staff member came over to assist her. Princess did not show any signs of apprehension or anxiety over this process. It was like she was picking out clothes with a trusted friend.
I'm so proud of my daughter. On this day she was confident and poised. Once the glasses arrived, there will be an adjustment period. I do anticipate that she will have anxiety over being teased about them. I know that her team at school and I will help her conquer this fear head on.
Bit by bit I am learning to instinctively help my child by easing her into things. Telling her ahead of time about the new office members helped her see that they were friendly and not scary.  Going back with her to the exam room and leaving when I sensed she was comfortable showed her that she doesn't always need me by her side. She knows that I'll be there if she does need my assistance. Suggesting that she wear her glasses at home assured her that she wasn't going to have to jump into something before she was ready. Finally, being in contact with her teacher and school staff will help boost her confidence. She knows these people and I have her back.
With just a few minor adjustments, my daughter will be rocking her new glasses in know time at all.

Thursday, February 25, 2016

Looking Back: My Daughter's First and Best Behavioral Health Hospitalization

My daughter's been blessed with pretty good physical health. She's rarely sick and hasn't had to miss much school due to illnesses. Her mental health has been almost the opposite. Even though she's been stable over two years now, she's missed a lot of school due to behavioral health challenges.
She was diagnosed in August of 2011 with bipolar disorder, however it wasn't until over a year later that she had her first hospitalization. As luck ,or divine providence, would have it, I was out on stress leave from my teaching job so I was able to be available throughout her entire stay.
In October of 2012 my husband and I were attempting to get our daughter ready for school. For whatever reasons she still had not transitioned back to  school. She was having an extremely difficult time getting ready for school every day. We saw a lot of aggression and self- injurious behaviors during this time. Finally one morning, I made the dreaded phone call to our local police to ask for assistance. I truly was hoping  that we could eventually make it to school that day. The officers who came out that day didn't really know how to help us, but they were able to diffuse the situation. My child calmed down enough so we were able to transport her in our vehicle to an Emergency Room not in our city, but still close by. My daughter was seen by the triage department before being taken back to the ER's psych ward. It was a scary place for sure.
At the time we had insurance through my work that was pretty amazing. We only needed the doctor on call to approve hospitalization for my girl. For all of her future hospitalizations, she was on government insurance. We had to jump through many hoops to get approval on each of those occasions.
The problem we had this time was not with getting someone to agree that my daughter needed hospitalization, rather it was finding a bed.  The hospital we went to didn't have a place for an eight year old with mental health issues. We had arrived at the ER around 10 a.m. that morning. By 6 o'clock that evening the nurses still hadn't  found a bed in a neighboring city. I finally spoke up and asked what the hold up was. It was then that I discovered that they had only been looking in the county that we live in. I implored them to look into other counties. Finally at 9 p.m. a bed was found in different county over 100 miles away. I didn't care, I was elated that one had been found. My husband and I called our therapist who then called the facility to make sure it was a quality hospital. Once the decision was made, we signed tons of paperwork to pre-admit her. I think it was almost midnight before we were told that the ambulance that would be transporting our daughter had arrived. At this point my child was calm and almost angelic. The ambulance workers strapped her in and buckled her in just to make sure. This was a new and terrifying experience for all of us so I rode in the back while my husband followed behind in his car. I recall that it was about 4 a.m. when we arrived at our destination. It was eerily quiet  and dark in the hospital corridors.  When we reached the youth unit, we signed more paperwork while the nursing staff took our daughter's vitals. Normally, when a child is admitted to a hospital, the parents are allowed to see where there child will be staying and in most cases, will be offered a bed to sleep on. In behavioral health hospitals, this is not the case.  We were ushered out while our precious baby was whisked off behind a set of locked double doors. That first experience that morning was not as traumatic as it might have been because my daughter was tired and ready for bed. As we were escorted out the front door of the building we were told the normal visiting hours. We were also told that since we'd traveled quite a distance, we could see our girl in a few hours.
As we stumbled out into the pitch black darkness of the early morning hours, numb and in shock,  I looked down at my watch. It was 5 a.m. I still hadn't slept a wink and was suddenly overcome with exhaustion. My husband and I had no clue where the nearest hotel was. We both looked up at the same time and noticed one right across the street from the hospital. It was a godsend, an expensive godsend, but a godsend nonetheless.
After we checked in, we promptly fell into a fitful sleep. I woke from my slumber sooner than my husband so I went down to get a breakfast. Then I brought my husband up something to eat so that we could see our cherub as quick as possible.
I don't know why I thought it would be easy to see my daughter that first morning. It was one of the roughest days I had ever experienced up until that point. As the double doors closed at the end of our visit and we left, our beloved child cried gut wrenching sobs. I knew that she was where she needed to be. I knew she was safe. Still, it was hard.
The hospital staff encouraged us not to visit every day so we went back home. Over the course of the next 10 days we saw our daughter as often as we could. I talked with her social worker every day. When she was discharged, we couldn't find an outpatient program close to our home, so my daughter and I stayed at a nearby motel. On the first weekend, we were advised by our private therapist to stay close to the hospital instead of making the trek back home. Our therapist felt that our child might not be ready for a home visit yet. She also thought that if she needed to return to the hospital, being close by would help her return to the place she had been at. As it turned out, my girl was still unstable and required more hospitalization. She was accepted back at this wonderful hospital since she was in their outpatient program. She stayed for another 10 days inpatient before resuming their day treatment program.
While at this facility, the social worker acted as a liaison between myself and the school, and myself and the doctor. I later learned this is the exception, not the norm at most behavioral health hospitals. In fact we  never experienced this level of care and concern again.
The entire nursing staff worked with our family and our child in a loving, but firm manor.  At home, we implemented many of the coping skills that our daughter learned though.
It was rough, really rough leaving my pride and joy in the hands of strangers. At the end of my girl's stay there, they were no longer strangers, they were almost family.
In the years since this hospital stay I have come to realize how rare it is to come across such a wonderful behavioral health facility as this one was. For that I am truly grateful.
Look Mom! I found my smile

This picture was taken a few weeks before my daughter came home from her first hospital stay.

Wednesday, February 17, 2016

Why My Daughter is an Only Child

For years my daughter begged my husband and I to give her a sister. I don't think she fully understood how difficult a request that was. Even though she knows that her father had cancer, she doesn't realize that the chemotherapy that saved his life rendered him incapable of creating a new life via natural means. Before my husband underwent chemotherapy, we did take measures to freeze some of his little swimmers in hopes of having another child. In Vitro Fertization was something that we considered eventually doing. It is pretty expensive and not 100% effective.
 Our situation is pretty unique because my husband's second bout with cancer came at the same time as my pregnancy with our daughter. We thought about trying to have another child when our daughter was around four. At that time my dad had passed away. I received enough money from his estate to consider doing In Vitro or possibly adoption. When I broached the subject to my husband, he replied, "We're thinking of getting a dog not having another child." I laughed when I heard his response. I wasn't surprised though.
At the age of four our little cherub was already a handful. Even though my husband came from a large family and we had agreed to have three or four children in our brood, he knew his limits. So the topic of having additional children never came up again.
We'd actually been married for six years before our daughter was born. About a year or two after we were  married, I became pregnant. Sadly that pregnancy ended in miscarriage. It happened very early into the first trimester so we never learned of the sex of the baby. I believe in my heart I was carrying a little girl. We named her McKenna. One day I will see her again in heaven. I imagine her running into my arms and saying, "Mommy!" Knowing this gives me great comfort.
It wasn't until four years later that I finally conceived Princess.  My husband and I had dealt with the onset of my mom's mental illness and my husband's testicular cancer in the years before that. In fact we were told that we could try to get pregnant after our first battle with the beast of cancer because that time he'd only had surgery and radiation. We had to wait six months after the treatments ceased to try to conceive. We didn't get pregnant right away. My husband's doctor suggested that he come back and see him in six months if I still wasn't pregnant. My doctor took a different approach. He suggested that we increase the frequency of our conception efforts around the time of my ovulation. His plan worked! I became pregnant within a month of this method.
As I previously stated, my husband's cancer returned at the same time as I was pregnant. It turned out to coincide almost exactly with my our daughter's conception. I might even be so bold as to say that looking back my husband discovered a cancerous lump the same day as our daughter was conceived. It was surreal. We were announcing that cancer had reared it's ugly head. At the same time we were announcing a new little life growing within me. My mom's mental health issues became worse during that time period as well. Essentially I was dealing with cancer and an unwell mother all while pregnant with my child. It was a stressful time to say the least.
As the years progressed, we saw the signs of ADHD in Princess which was later diagnosed as bipolar disorder and just this past October we added autism to my daughter's diagnoses. Life with her has certainly been a roller coaster.
This past week I've been having more car chats with Princess as I transport her to and from school while we wait for some school transportation issues to be resolved.  During one of these the subject of my miscarriage came up. My wise child said, "I know why God didn't let my sister live." I asked her why. Her response blew my mind. She replied, "Because God knew how hard it is for me to get along with other children and to share my toys. Maybe if my older sister had lived, we would always be arguing. It's much easier for me not having a sister." Wow! She's right. I honestly don't feel that she could have handled a sister. Before my daughter was stable, there were many days when she wasn't safe to be around. Yes it is hard for her to be an only child. I'd venture to say that for her, for us, adding another human to our household would have been too much.
As for the dog, we did get a one. She's added a lot of joy and love to our family. I guess my daughter did get a sister after all.
My daughter and her fur sister on the day we adopted her.

Sunday, February 7, 2016

Solving the Mystery of the Missing Cookie or Outsmarting My Child

Recently my husband started a new job that takes him away from our home for most of my daughter's waking hours. He's out the door before the rooster crows and back home long after the sun has set. Understandably this change has been extremely hard on our daughter. After an extra hard day, I decided to make some Valentine chocolate chip cookies for my girl. You know the ones that you break apart and pop in the oven. The beauty of these nuggets of goodness is that I can bake only a few a time. That way I have a little control over how many my sweet toothed daughter eats at once. She's a sneaky little one. She'd eat a dozen in a sitting if I'm not careful. So on this particular day I baked two rows of four. By my calculations that is eight. Or so I thought. 
After the cookies finished, I pulled them out of the oven to cool. I told my daughter she could have four cookies, but no more. I thought it would be a nice treat for her to have the remaining cookies in her lunch pail for school the next day. 
I left to go do something else in the house. When I returned, there were only three cookies left. At first, my daughter tried to convince me that there were really only seven cookies to start with. Somehow I must not have counted right. I thought back over my steps and was sure there had been eight. I explained to her how I knew there must have been eight to start with. Since that tactic didn't work, she told me that our clever dog must have tipped over the cookie sheet and eaten just one. I informed my clever child that if the dog had done this, she would not have eaten just one cookie. I also would have heard her get into the cookies since she is not stealth when stealing people food. My daughter and I began to argue about the missing cookie a bit. I finally told her that I would just not be baking anymore cookies anytime soon since we could not solve this mystery. Finally her guilty conscience helped her a bit. She suggested that perhaps she may have "estimated" incorrectly when she took her share of the cookies. 
Lesson learned: Next time I'll only bake the exact amount I'd like my child to eat or pay closer attention to them. 
Some may say she only ate one extra cookie. To me it is the principal of the matter and eating only what you are allowed to eat. We're obviously working on being honest too. We've still got a long way to go on that one.

These were the remaining two cookies left the next morning. 
I'm not sure who ate one more. I just know it wasn't me.

Wednesday, January 20, 2016

Monday Err...Wednesday Morning Chaos

Two days ago my husband started a new teaching job. In a city 50 miles away. That means that he has to leave the house by 6 a.m. to make it to work on time. I worry that he'll get stuck in traffic and be late. As I was worrying about this in the wee hours this morning, I decided to pray instead for a clear path for him. Then I drifted off back to sleep. I was awoken by what I though was my alarm. It was in fact my husband wanting to know if our daughter had made it to school OK. My eyes jolted awake as I realized her school van would be arriving any minute. Yikes!
I quickly sprang into action. I found my daughter playing in our family room and watching T.V. I mean if no one is going to make you get up and get dressed why not have a little fun? Thankfully, we had picked out her clothes for the day last night. I grabbed them and told her to get dressed spit spot. Then I grabbed her morning meds along with her favorite drink of choice, apple juice. While I was running around like a chicken with its head cut off, she was still in turtle mode, slow. I may or may not have gracefully encouraged her to speed the pace up. Then I ran over to see what was on the lunch menu for the day. It was Nachos and Cheese. Nope not a meal that my child would eat. I made my daughter's lunch in under three minutes. At that moment my daughter emerged from the rest room fully clothed with all but her shoes and socks on. I looked out the kitchen window and saw that the school van had just pulled up. I told my daughter to tell the driver that she'd be right out. She instead asked me to do that while she got her jacket. I had her look down at what I was wearing- my pajamas. She tiptoed out to the waiting car and explained that she was running a few minutes behind. Her jacket was no where to be found. Just as I was about to give up I spotted it. My daughter was still taking her own sweet time with her shoes and socks. Her socks have to be lined up just so otherwise they don't feel right on her feet.  I should be so happy though because there was a time when she wouldn't even wear socks. After what seemed like an agonizingly long time, my child had her shoes on and was out the door. Just as she was going out, she noticed a few sprinkles. She asked for an umbrella, but I assured her she'd be alright. I thought we were in the clear when all of a sudden she remembered that we had been charging her iPod overnight. I would have told her to get in the van, however, I was still in my PJ's. As luck would have it the iPod and headphones were not in the same place. I located both in under a minute and handed them to my girl. 
I gave my daughter a kiss and reminded her to make good choices as she left the house for the final time this morning.
I think that all of the above was accomplished in under 10 minutes. Like lightening! Whew!
I was going to call the school or email them to request that my daughter not receive a pink slip for keeping the van waiting. After all, wasn't it my fault? Wasn't I the one who overslept? Then I remembered a few things. My bedroom door was closed so I wouldn't hear my child at play. Additionally, my alarm clock had been unplugged. When I woke up in a start,  my child was happily playing even though she knew it was a school day. In my mind she did nothing to help herself. In fact she contributed to her delay this morning. I'm going to just leave this one alone today. Usually, although I hate to admit it, I would have tried to rescue her. Nope today she will have to take the natural consequences of her actions.
This afternoon, we'll have a chat about better choices for tomorrow.
In case you're wondering I'm still in my jammies as I type this.

Sunday, January 17, 2016

An Announcement From Google

I'm passing on the following note from Google. Thanks so much for following our journey.

"An update on Google Friend Connect

3 weeks ago by A Googler
In 2011, we announced the retirement of Google Friend Connect for all non-Blogger sites. We made an exception for Blogger to give readers an easy way to follow blogs using a variety of accounts. Yet over time, we’ve seen that most people sign into Friend Connect with a Google Account. So, in an effort to streamline, in the next few weeks we’ll be making some changes that will eventually require readers to have a Google Account to sign into Friend Connect and follow blogs.

As part of this plan, starting the week of January 11, we’ll remove the ability for people with Twitter, Yahoo, Orkut or other OpenId providers to sign in to Google Friend Connect and follow blogs. At the same time, we’ll remove non-Google Account profiles so you may see a decrease in your blog follower count.

We encourage you to tell affected readers (perhaps via a blog post), that if they use a non-Google Account to follow your blog, they need to sign up for a Google Account, and re-follow your blog. With a Google Account, they’ll get blogs added to their Reading List, making it easier for them to see the latest posts and activity of the blogs they follow.

We know how important followers are to all bloggers, but we believe this change will improve the experience for both you and your readers.

Posted by Michael Goddard, Software Engineer"
Love and Hugs,