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.

I'll See Your College Bound and Raise You a Van Bound

So often, I think that my daughter is heading down the same path as her peers and then I wake up from my fairy tale dream when I talk to other parents. Most recently I went to breakfast with my best friend. She is one of the most supportive people I know, but our girls are taking very different paths. Her daughter is headed for college. Mine is headed to the great chasm of the unknown. Her daughter is successfully participating in Cello lessons, Water Polo and is a budding chef. I'm just happy when my daughter leaves play rehearsals with a smile on her face. She's hoping that her daughter will get a scholarship to a university of her choice. I'm hoping that my daughter finishes the  current school year on a good note.
I listen, encourage and give advice when my dear friend asks but I have no experience to draw on except my own as a student. I have chosen to live in the moment. It's easier for our family that way. Some might find it odd that I truly do not even know what the end of summer will look like for Princess. Princess has been stable for over a year but because of her day to day challenges, we focus on helping her overcome whatever difficulties today has brought. Tomorrow or even next month may bring instability which could mean more hospital stays.
I've had people tell me that I should dream again for my child. That I am limiting her. I've heard that I am giving up hope.
I'd like to think of the way that we are approaching my daughter's future as freeing. I'm freed from the burden of worrying about the what ifs. I'm protecting my heart from disappointments.Our family is on a boat in a vast ocean. We'll have the calm times where we can take a few breaths of fresh air. We'll also have some tremendous storms where we'll have to hold on tight.
Honestly this week I'm happy because a school van transportation issue seems to be resolved. My daughter also completed two pages of homework without complaining. This morning she was ready for school on time. These are the things we celebrate at our house.
I do want to be supportive to my friend, but it is tricky because our girls are starting to lead very different lives. I'll do the best that I can because that's what friends do.
My daughter may never be college bound, but she'll be ready for the school van tomorrow morning. I hope....

My girl and her best friend a few years back.

What Does Stability Look Like?

For a little over a year my daughter has been experiencing the longest period of stability in her 10 year old life.  Her father and I couldn't be happier.
A question I hear over and over is, "Is stability possible?" Some people believe "Stable is a place where horses live." When Princess was so unstable due to her mood disorder, I knew that stability was possible but it sure seemed a long way off. I also believed that stable was more than just a place where horses live.
Before stability came to live at our home, things were pretty chaotic. Even though we tried really hard to set limits and keep a structured environment, the littlest thing could trigger a meltdown of epic proportions. Sometimes we knew what the triggers were but other times we walked on eggshells. It was not very fun to live at my house.
Then Dr. Wonderful prescribed Amantadine. About the same time, Princess started at a Therapeutic Day School. Those two things combined have helped my daughter achieve the level of stability she has today. There is still the occasional day where Princess will have a meltdown but those days are less frequent. Additionally the duration and frequency of the rages have diminished.
When I ask my child to pick up her clothes, she does so. When I ask her to help with dishes or laundry, I may have to ask a second time but she will complete the tasks. When it is time for homework, Princess gets right to work with very little assistance from me. When it is time to stop a preferred activity, my daughter stops. If my daughter makes a poor choice that requires a consequence, she accepts the consequence. Recently Princess got upset about something my knight was telling her. She didn't like what she was hearing but she willingly took a cool out in her room until she was calm enough to rejoin the family. On that same day she recognized what she was doing and said, "That was an outburst. I'm sorry." Tonight as she and I were running errands for Christmas, Princess asked me if we could go home. She's learning to listen to her body. She knows how important it is for her to rest when she gets tired or overstimulated. That's a big step towards maturity.  Finally Princess has shown no aggression towards my husband or I in a very long time.
Before stability all of the above was not possible. Homework and chores were not expectations because they required too much effort on Princess' part. No matter what sticker charts or behavior modifications we used, battles ensued at the mere mention of homework or chores. We believe that just going to school and performing simple tasks really took their toll on Princess.
There are a few things I learned a long the path to stability. One was that stability is not achieved over night. We spent three years looking for it. Princess went through many many medication trials. She's had a number of hospitalizations. Another thing I learned is just as a child with Autism or Downs Syndrome has that condition but they learn to function in society with it, so does Princess still have her alphabet soup of diagnoses. Lastly we see that all of the things that were making her act out have calmed down quite a bit.  However, I do find them lurking in the shadows. We are ever mindful of them.
I have no idea how long this period of stability will last but for now I am enjoying it. My knight and I are living in the present. When and if Princess becomes unstable again, we have hope that it will end because we've seen stability and we know how wonderful it is.

*Please note: This is my family's experience. Yours may be different.
Additionally, do not stop or start any medication without the advice of a licensed doctor.

Oh But She Seems So Normal

When I hear the above statement, sometimes it angers me but other times it makes me happy because it means that Princess is so stable that others don't see anything wrong. Sometimes I want to shout and scream about all of the unspeakable things my family has had to endure. Society wants a cure for cancer. I want a cure for mental illness.
Lest anyone think that I am exaggerating about my daughter's problems, I'm going to give you a glimpse into a day into our life.
July 21, 2013 did not start out like any other day. It was like many other days that summer. From almost the minute Princess woke up, she was ornery and uncooperative. Her birthday party had been the day before. She was still upset that only one person came to her party. Early on my husband and I decided to stay home from church because we sensed that things would go south rather quickly.
Around 11:00 I had to call the county's crisis line to ask someone to come out to evaluate Princess as she was becoming hostile, angry and aggressive. Shortly before this she had been chasing after me and attacking me with her stick pony. Anyone who says to just pull it out of her hands has no idea how strong a child fueled with anger and  adrenaline can get. I once had a police officer tell me that we just needed to spank Princess and she'd be fine.
Anyway back to the story. The crisis counselor told me that she'd have someone call us back. They knew us well because we were having a lot of problems with Princess. They had just closed the file on our case because they couldn't fix it in three weeks. One of their specialists had made the statment that our house was chaotic and that we let Princess "rule the roost." Again merely a parenting issue.
Sorry I keep getting side tracked but this is important history to  understand what happened next.
The head psychiatrist who oversaw our whole county's mental health crisis line called me back to say that they would not be coming out to our house that day. I said, " What if I get a black eye or a broken arm?" He replied that they still would not come out.
 Unfortunately some medicine that I had given Princess to calm her down was very short acting so it wore off after only a couple of hours.
During this time I had been texting some friends and family asking for prayer. They were people who I knew we could count on. One of them asked if she and her husband could come over to see us to give us a breather and offer support. After some discussion, my husband and I decided to agree to letting them come over. 
About 30 minutes later Clarice and Richard came over. Clarice had brought a  birthday present for Princess. Princess and I  oohed and ahhed over it while the guys were outside taking a breather on our back patio. Princess became agitated because she wanted to show Clarice the new doll she had just gotten for her birthday but Clarice and I were talking so she had to wait. For the first time ever, she attacked someone other than my husband or I. Clarice was left with scratches on her arms.  Princess got distracted by the swing outside and asked to go play on it. I agreed and all three of us went outside. Princess was only on the swing a few minutes before she left our property and started running barefoot down the street. I was certain she was headed for her friends house a few blocks away. I tried calling the child's mother while Clarice went looking for our husbands.
Before I knew it the friend's mother was calling me as I was calling her. She called me very concerned because Princess was hiding under a bed  and had made some alarming statements.
My husband got in our car hoping to get her and put her in it because he knew she would not willingly walk back with him.  After Princess refused to get in our car,  I had no other choice but to call the police even if I didn't think they could help us.
Twenty minutes later the police had still not arrived and by this time Princess had run off again. We really were not sure where she went.
I called the police again and was told that they were busy with other calls. Finally they arrived after my second call. By this time Princess was now back on our street but was in different neighbor's house hiding under the bed in the master bedroom.
Our neighbor, Jim and his wife, Betty came outside to talk to us. About the time the police finally arrived, Princess was on the move again. She moved into the neighbor's tent trailer so that is where the police officer talked with her. When he came over to the front yard where we were all gathered, he said that Princess recognized there was a problem and agreed to go to the ER.
Princess wanted to ride with Clarice and I so the guys took our car and followed us. By this time we were starving and Princess had fallen asleep in the back seat so we grabbed some fast food and proceeded to the ER. Once we got to the ER, Princess was an angel. This is how many ER's see kids like mine. Then they are assessed and sent home again. What the doctors don't realize is that children are rapid cyclers so it would just be a matter of time before she would rage again.
After triage, we were sent to a holding room in the ER and sent our dear friends on their way. Previously when Princess had been in the ER it was party time with TV and ice cream. What kid wouldn't want to show their best side in that situation? This time I told Princess there would be no TV. This set her off. Before I knew it lots of ER staff were in the room trying to subdue my child. It was not a pretty sight. Well after that the staff were pretty much on our side. They told us that since they had witnessed a full bown rage for themselves that they would advocate for us with the crisis team assessor who would make the call whether or not to admit her to a behavioral hospital. I was still not convinced since we had been at the ER  four times in the last month and had been sent home all four times. This time when the evaluator came, she read the reports,  and saw my daughter had been subdued, she decided not to interview my daughter as had been their previous practice. She felt there was enough evidence to admit her. Now the difficult task was finding a bed for her. If they were unable to find her a bed, she'd have to stay in the ER for up to three days until one was found.  Even though we live in surburbia, there are only 13 beds available for kids my daughter's age. After many phone calls and hours later, we were told that a bed had been found almost an hour away in another county. By the time we got my daughter checked in it was 6 a.m. the next day. My husband and I were exhausted.
I wish I could tell you that after that hospital stay, they found the right medications to bring her to stability. What happened instead was that, she had three more hospital stays over the next two months. She would be in a hospital for a week to ten days, come home for a few days, become unsafe again and have to be admitted again. Thankfully, my daughter's psychiatrist is forward thinking and wanted  Princess to try the new wonder drug but this wasn't until October.
In mid October we began to see a beautiful child emerge. We knew she was there all along but the fog of mental illness was clouding her.
This summer Princess has had two major successful events. She had an awesome birthday party and a fantastic time at VBS (Think Sunday School Summer Camp for a week.) She's also doing pretty normal things like going to the beach and a baseball game.
We may not be going on any fabulous vacation any time soon but I'll take what we have over the trips to  behavioral hospitals anytime.
I know all to well that Princess' current medicine regimen could stop working at any given moment. I am also aware the teen years are coming. They bring additional challenges to kids with mental illness because their hormones get out of sorts which in turn affects the balance in brain chemistry. For today I choose to not look to far into the future. For today I choose to focus on all of the blessings that stability brings into our lives.
The next time someone says that my child is typical, I just may thank them for that compliment but in my heart, I know how hard all of us have worked to get Princess to that point.
*Please note: All of the names mentioned here are fictitious but the people and events are not.

A Reason for Hope

I have wanted to share all of our good news but wasn't sure how to go about it but finally am taking the plunge. Please know this is my experience. All children are different and respond to psych meds differently but since my daughter has done so amazingly well on this new medication. I felt compelled to share about it with you.
I've blogged in the past a little about out journey so far. You can read more about it here .
In December of 2012 we started our first of many new normals but Princess was stable. Unfortunately the medication that made her stable also made her crave food especially carbs. She ballooned up to over 100 lbs by May of 2013. Her pdoc weaned her off of that med with the hopes of starting a new med soon. Well becasue of an insurance snafu we did not get to start my daughter on a new medication  So last summer Princess was in and out of medical facilities over the course of two months trying to get her meds just right. She would get discharged and be home a few days then would end up having to go right back because she would become so unsafe.  Some  parents with children like mine have coined the term "Street and Treat." That was very true for us. For a while I felt like I was living in the movie "Groundhog Day."  My husband and I were seriously considering a Residential Treatment Center because things had gotten so bad.
In September we were finally able to get Princess in a therapeutic day school that the public school agreed to pay for but she  was still very sick.
In October when we were at our wit's end, our pdoc suggested we try this new med she had heard about at a conference that she recently attended. She said that it had been used to control behaviors in kids like mine. It had been used for a long time in Parkinson's patients but just recently in kids. With nothing to lose I agreed to try it. I was scared to death that this was not going to work and we would eventually end up having to place my child  in an RTC in a few months. Well lo and behold it was the wonder drug.
I cannot begin to tell you what a difference this drug, Amantadine, has made in my daughter's life! She is like a different child. She can attend and focus. She her acts of aggression are considerably less frequent and shorter. Her executive functioning has improved dramatically. Her SPD issues are almost non existent. The change in my child is so dramatic that I cannot believe it is the same child. It is like her behaviors were getting in the way of us being able to see who she truly is inside.
Even when she was stable in 2012, she was nothing like what we are seeing now. Her teachers are noticing as well. I can honestly say that I am enjoying spending time with my child. I no longer dread when the next rage is coming.
Two additional benefits are that we have decreased her other meds significantly and she has lost all of the weight she put on. We were able to go off of one med and are dereasing another. It is the pdoc's hope that eventually Princess will only need to be on one or two meds in addition to Amantadine.
I'll end this by saying that if any of what I am saying sounds intriguing to you, I encourage you to ask your child's doctor  about considering Amantadine for your child. I'm posting some links to some studies/ research about Amantadine if you are interested. Here's one. Here's another. The second link has the information about 1/2 to 2/3's of the way down the page. The facility is a highly respected residential treatment center in Texas.
We had almost lost all hope. We are beginning to dream again.
Never give up!