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.

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

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

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.

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.

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.