Monday, December 30, 2013

Too Much Christmas

We had such a wonderful Christmas, even made a trip to the snow on Christmas Day to let the boys experience a white Christmas surrounded by family we love. Over the week we enjoyed late nights, yummy treats and lots of excitement, but unfortunately tonight, we started to see the threads of stability start to unravel.

This happened tonight after coming home from a small gathering to welcome a family friend home. It took place in a home my son had never visited before, surrounded by people that he didn’t know or only met a few times with the exception of his grandparents. He appeared to take a small nap while there, falling asleep on the couch while everyone visited around him, but as we arrived home, he was quickly in tears.

“The people there were scaring me, that’s why I closed my eyes and looked asleep.” Obviously concerned, I asked, “OH hun, what happened? Did someone do something?” He responded, “No one did anything wrong, they were just scaring me, it wasn’t their fault. He then started mentioning other moments in his day where he was frightened by a kid he saw playing outside. He wasn’t making much sense and the tears continued to fall.

My husband and I looked at each other, thinking the same thing,’s been too much, for too long.

Too much fun.

Too much change.

Too much sugar.

Too little sleep.

Too much Christmas.

We see the signs loud and clear. It’s time to reign it in and get things back on track.

It’s moments like these that remind me just how fragile he is. How easy a change in routine, or simply too much fun can make him sick. It reminds me that this illness is still a part of his life and that keeping him well is a constant balancing act. This is living with mental illness.

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As much as there was too much Santa, there’s never too much Christ. I loved knowing that we both received comfort in praying for healing through Christ our Savor as I tucked him into bed tonight. We don’t need much to feel the love of God, I am thankful to have Him by my side in times like these.

Sunday, December 22, 2013

Our Plan of Action: “Big Consequences”

I’m happy to share that things have been going good, I mean really good lately. My oldest son has been doing a wonderful job of controlling his violent anger towards us. On two separate occasions he became quite upset, but he didn’t threaten or harm us or any property. This is after we established new “big consequences” for such threatening behavior. His consequence are as follows: First, he’ll lose his bed mattress in his room for a week and will be required to sleep on the floor. This is not something he’d consider fun since he loves his bed. We figure that after becoming violent, he’ll have to live for a whole week thinking about his actions as he tries to go to sleep on the floor each night. Second, he’ll lose all electronics for a week and finally, third he’ll be demoted to riding in the back seat of the car. Which currently is a new favorite privilege of his that he recently earned when he turned 13. At this point we feel that he has enough control and is currently stable, but he doesn’t have enough incentive to control his anger. He’s spent years reacting to stress with violence and now it’s become somewhat of a habit. This is our response to the doctor wanting to hospitalize him in order to “teach him a lesson.”

In addition, we also contacted the school to come up with a plan on minimizing his stress through the rest of the school year. Especially when it comes to large school projects and tests that seem to happen all at once. Our hope is that by reducing his stress, he’ll have a better shot of controlling his actions while allowing him time to practice self control over smaller stress loads.

So far, things have been wonderful. It also helps that he recently had Thanksgiving break and is now on Christmas break. The true test will come when the workload increases and there are no breaks in sight.

At this point, we don’t know what the outcome of this plan will be, but we had to try something. I’m certain that if or when the time comes that he does face these “big consequences,” it will be one rough week for all of us. But if we have a chance of helping our son take control of his actions and learn from his mistakes while he’s still young, it will be worth it in the long run. (Fingers crossed)

But in the moment, as my house sparkles with Christmas decorations, my cup runneth over. I’ve been having so much fun with my kids. They’re being kind, helpful and polite. But more than that, I’m connecting with them, laughing with them and gushing with love over them. It honestly feels like a Christmas miracle.

Whatever it is, I am blessed.

* * *

Thank you for being a part of my life through letters and prayers. Though we’ve never met, I think about you and your families and I’m praying for you tonight. Merry Christmas my fellow Mama and Papa bears, may you hold your cubs close and be filled with joy.

Wednesday, December 18, 2013

A Story Worth Reading about Raising a Child with Mental Illness

One of my followers shared this link with me and I knew it was a “must share” the moment I saw the video. It’s a news story by CNN called, “My Son is Mentally Ill’ So Listen Up.” The story starts with a pretty in-depth video, introducing you to a 14-year old boy who has Bipolar disorder and psychosis. He’s been hospitalized more than 20 times and has attempted to take his own life. This story takes an inside peek of what many of you are already familiar with, it’s the struggles, the pain, the fears, the stigma and the love. Stephanie Escamilla decided to speak up so her and her son could share their story after feeling frustrated that the only time the country pays attention to mental illness is after a tragedy. This story goes beyond the struggle of one family, portraying what’s happening inside homes all over America. It shows how broken the system is and how far we need to go, yet it’s clear that the love of one parent can truly make a difference.

Sit back when you have a few moments, this is a very in-depth story that’s definitely worth your time.

My Son is Mentally Ill’ So Listen UpBy Wayne Drash

Sunday, December 15, 2013

Richard Dreyfuss and Susan Boyle Share their Story.

I recently read two articles, one about actor Richard Dreyfuss opening up about his bipolar disorder diagnosis and one about “Britain’s Got Talent” Susan Boyle who discovered recently that she has Aspergers disorder. What I found to be interesting, but not surprising, was that both felt relieved after getting their diagnosis. Dreyfuss shared that it took away his guilt because he realized that this was something he was born with and Boyle shared how she felt relieved and more relaxed about herself. 

So do labels matter?

Yes they do. For those suffering, labels open up a new world filled with support and resources. More importantly, it helps a person understand their own life experience.

Personally speaking, as a mother with a child diagnosed with a mood disorder, a label provides a path to wellness. Results may not be immediate, but at least I know where we’re headed and I have support along the way.

Check out the stories below, I think you’ll find them as interesting as I did.

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Richard Dreyfuss reveals bipolar diagnosis 'took away all of my guilt'

Susan Boyle: I have Asperger's syndrome

Bonus article (mentions how long it took to find the right medication):
Richard Dreyfuss Opens Up About His Battle with Bipolar Disorder

Monday, December 9, 2013

The Mommy Christmas Date

The line was at least 10 people long. It was raining out and this was the only coffee shop close enough to the therapist’s office. This was a special occasion, a “Mommy Christmas Date”, a family tradition I started with my boys years ago that begins with a trip to the store to purchase a new painted glass ornament for our Christmas tree and ends with a cookie and hot cup of cocoa, with whipped cream of course. We decided to squeeze in our date before our therapy appointment on Friday.

The line was long in the little coffee shop and patience was running short. My youngest went into meltdown before the date even started when he found out we weren’t going home to get his iPod before the therapy appointment. It was one of those days where he was stuck on a thought and we couldn’t help him shake it. But dang it, we were going to have fun today on our special date, tantrums and all.

As my older two boys tried to ignore their complaining little brother and enjoy their hunt for the perfect ornament, I spent my time trying to distract my little one into having some fun, hoping I could get him back on track. But as the date came to a close, he was still persistent on not having fun without his iPod in his pocket. His protest continued into the crowded coffee shop until he decided to go outside into the rain to show me how he was refusing to have any fun.

I decided to ignore his protest, and smiled at his brothers who patiently waited in line with me. Then at one point I looked back to check on the little one who was no longer pouting under the rain drops, but instead had his body firmly pressed against the outside entrance to the coffee shop. He stood with his feet apart and his arms crossed, firmly shaking his head “no” side-to-side, telling the pleading couple standing before him that they could not enter the coffee shop.

Mortified, I ran to the door and immediately apologized to the couple who awkwardly giggled as they explained how my son was refusing to let them in.

Thankfully they seemed understanding as they could tell I had my hands full.

I have to admit, as embarrassing as this scenario was, I also wanted to laugh. I should have know that my little one could be so bold!

Thankfully this story ends on a happy note. As my little one went into round two of running outside the coffee shop, my oldest looked at me and said, “I’ll go outside with him, it’s too overwhelming anyways in here with the crowd.” Then a few minutes later both boys came back inside from the rain. This time my little one apologized and stood back in line. Surprised, I turned to my oldest son and he responded with, “I fixed it! I told him that the way he was acting was going to earn him a “no pass” at home (which means no electronics) and explained that if he started behaving now he could still earn a “pass” tonight when we got home!”

And just like that, at the end of our special “Mommy Christmas Date” we all sat together laughing and smiling while enjoying a warm cup of cocoa.

God bless us everyone… and the poor couple who came upon my little one.

Wednesday, December 4, 2013

Life in Shadowland—Guest blog from Kelly Schmidt

Today I’m honored to share with you a guest blog from one of my followers, Kelly Schmidt, mom to Nathaniel, and a recent Ph.D. graduate in a developmental psychology program. I was really moved by her story and her description of living in shadowland, realizing that we are neighbors in this isolating place. She puts into words what so many of us experience day-to-day. I am grateful for her story because I can rest in knowing that I am not alone, I think you will too.

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Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)
This piece was written in June 2011. Events described below occurred in July 2010

When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems. Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting. I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality. His smile is high wattage, his giggle is contagious. He is scary-smart and has an amazing memory. Sometimes he is so thoughtful and concerned about others, he takes my breath away. He has a very strong faith and knows more about the Bible than many adults. He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel. He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly. He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders. The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD. The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes. He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome. He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Home is where the explosions occur. Home is where there is defiance, anger, and violence. Home is where frustration boils over to punches, requests lead to rebellion, and yelling and tears are almost daily occurrences for all members of the family. Peace is fleeting. Quiet, dreadful anticipation of the next meltdown or outburst is the norm.

It is a lonely and shameful place, here on the edge of two worlds. We seem to belong in the world of families with “typical” children because to almost everyone Nathaniel appears to be a “typical” child. But, he is not, so we don’t. We don’t fit neatly into the world of families with children with special needs either. Learning disabilities, mental retardation, autism – people “get it” when a child has a diagnosis like that and they feel compassion for the child and family. Families of children with visible or recognizable special needs face many challenges, but there is usually a network of support for them – support groups, special education services, therapies, teams of knowledgeable medical professionals. I don’t think anybody has sponsored a walk-a-thon for neurodevelopmental disorders. We live in the shadows of those two worlds. Alone. Frustrated. Afraid.

Shadowland is dominated by fear. Fear is a primal emotion. Fear activates the brain’s “fight or flight” response. Countless parents over the centuries have chosen to fight their fears in response to a threat toward their child, maybe even laying down their life to save their child. What is a parent to do, then, when the threat they face, the fear they feel, comes from the very child they innately want to protect? Who wants to live in fear of their beloved child? I don’t want to, but I do.

I have been punched, slapped, kicked, bitten, pinched, and head-butted for years. During the 3 months that we had him on stimulant medication for the ADHD, he attacked me daily. Learning karate has been a great thing for Nathaniel, but it has made him strong and his physical actions have power. Last summer, he slapped me across the face hard enough to make my nose bleed. A few days later, he threatened me with scissors.

Sadly Nathaniel’s little brother has been a frequent target of physical aggression as well, probably more often than me. Joel has witnessed most of the violence directed at me, including the bloody nose incident. I worry so much about the impact of this on Joel’s emotional well-being. Kevin and I try to protect him as best as we can, but the violence still occurs on too-regular a basis. And so there is guilt, and sadness, in Shadowland.

Life in Shadowland means frequently feeling helpless, ineffective, beaten down, and demoralized. It is so ironic that one of the main topics of my dissertation is parenting self-efficacy – the notion of feeling both confident and competent to complete the task of parenting. My self-efficacy with Nathaniel is generally very low. The “usual” parenting strategies do not work with him.

So life in Shadowland also means that we must search, question, research constantly. Maybe this book will have some answers. Maybe this professional can help us. This website, that therapeutic technique – or this medication. The day the psychiatrist prescribed an “atypical anti-psychotic” medication as a mood stabilizer, I cried. Who wants to think about their child taking a medication like that? But it has helped – quite a bit, actually. For that, we are very grateful.

Life in Shadowland means being on edge most of the day – scanning, searching, evaluating, predicting. What will set him off this time? Has he had enough sleep? Did he eat recently? Being overly tired and/or hungry lowers his threshold for problems. Can we safely get through this event, that outing, that trip or vacation without incident? So much unpredictability, so much stress.

This hypervigiliance comes at a cost. It is exhausting to live in Shadowland. Watching, waiting, negotiating, managing, reacting, calming, containing, cleaning up – it sucks me and Kevin dry. Parenting these days is not as physically tiring because the boys are able to do so much more for themselves. The mental fatigue is unbelievably overwhelming, however.

Living in Shadowland requires thick skin. The heart-stabbing pain of being the focus of your child’s rage and violence is beyond words. It is not easy to de-personalize the experience, but you must. Faulty neural wiring and biochemical breakdowns are the root causes of his behavior, not some flaw in me or Kevin. Some of you reading this may think that our parenting styles have caused Nathaniel’s problems, or that I am exaggerating the seriousness of the situation. I will be the first to admit that Kevin and I have made, continue to make, and will make mistakes in the future, but we did not cause him to be this way. But you believe what you want – I have thick skin and I know the truth.

That brings me to the worst part about living in Shadowland – the absolute isolation and loneliness we feel. We are, by definition, hidden. I know of only one other family living with a child who is a little bit similar to Nathaniel, except that her challenges are present in all settings, and she is adopted. I really don’t know another mother who scans the room for sharp objects when her child starts to become upset, or who has had to stop on the highway to place car seats in separate rows in the minivan so that one child can be protected from the violence of the other child, or who rejoices over a voluntary apology for an earlier abusive attack by her child. On the one hand, of course I am thankful that he does not display this behavior at school or church with other children and adults, but on the other hand, I feel ashamed and embarrassed to explain to his teachers that they get the Dr. Jekyll while we get the Mr. Hyde.

Naturally I have spent a lot of time trying to work out the “why’s” – Why is Nathaniel like this? Why me, Lord? But that is the best part of living in Shadowland – I have been forced to my knees over and over again to seek comfort and courage. I have latched on fiercely to God’s promises in Jeremiah 29:11 and Romans 8:28 that He ultimately has a plan for me and for Nathaniel that He means for good, not for evil. I have to remember that we are created by God in His own image to suit his purposes and that he does NOT make mistakes. The refiner’s fire is not an easy place to be and I often beg for relief, but He is an On-Time God so I must trust that He will bring me through this time of trial.

I don’t know if we will always live in Shadowland. Nobody can tell us Nathaniel’s prognosis, although both his psychiatrist and psychologist are guardedly optimistic based largely on the fact that he does not have problems in settings other than at home. Lately we are having more good days than bad days, so for that we give thanks. My motto is “Prepare for the worst and hope for the best”. If we have already seen the worst, praise God. If not, I must still praise God because He is in control, even in Shadowland.

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Kelly Todd Schmidt is a city girl from Pittsburgh married to a country boy from Iowa; they split the difference and have lived for the last 12 years in Columbus, Ohio with their 2 boys (ages 11 and 8), a large garden, and a dog who is probably diagnosable on the DSM. In her life BC (Before Children) Kelly worked as a social worker and developmental therapist in a birth to 3 early intervention program, then enrolled in a Ph.D. developmental psychology program. She set a record for the department in number of years to completion but finally graduated this past May. She is now looking for the right job and in the meantime is making it with the help of good contemporary Christian music, tea, dark chocolate, Clorox wipes, and the Food Network.

Sunday, December 1, 2013

Holding Our Ground—Hospitals Shouldn’t be Used for Punishment

We had our oldest son’s psychiatrist appointment last week to discuss whether or not to add an antidepressant to his current meds. After careful consideration, our doctor decided to wait on it and observe him more over the weeks ahead. He didn’t feel like his recent behavior was due to a manic state or even depression but maybe stress and his inability to handle his feelings.

Once again our psychiatrist encouraged us to have him hospitalized and said it would be like “jail” to him and may teach him a lesson to not act violently towards his family. He agreed that he wasn’t unstable, but thought it was besides the point and that the unpleasant experience may discourage him to act this way in the future.

My husband and I stood our ground and told him that we refused to use the hospital as punishment, instead we firmly believe that the hospital should be a place of healing. We explained that if we use it to “teach him a lesson”, it may be harder for him to use when he’s legitimately sick. If on the other hand he was raging and we couldn’t get him under control or he was seriously putting our safety at risk, we would bring him there in a heartbeat. But at this time, we can see that he has some control and isn’t taking steps to seriously harm us.

So we decided that we would come up with our own tough consequences to help him learn to control his bullying behavior towards us. We’ve witnessed his ability to stop his behavior when an outsider comes into our home and hope that this same control can be used in the future.

I want to focus on the source of his stress, specifically school. If there’s anything we can do to decrease his stress there, we can possibly eliminate the violent behavior. In addition to the continued therapy to work on coping skills. But as many of you know first hand, it’s all trial and error. I guess we’ll see what success we have and go from there.

On a positive note, my son has been a joy to be around all vacation, indicating that his moods are stable for the time being. Wish us luck as we start back to school this week.