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.

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.

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.

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.

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

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.

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.