Thursday, June 27, 2013

Another Night Ending in Tears...

It was a rough night tonight.

Tonight my oldest was triggered by stress from an earlier play date and his youngest brother having multiple meltdowns (his worst ever).

It all started when my oldest son bit his brother, from there things escalated to the point where I had to lock him outside of our home. But once he was outside he picked up our heavy patio furniture and began slamming it into the sliding glass door over and over. With each slam, I grew more terrified it was going to smash through and injury him, yet I knew he wasn’t safe to let inside. As I tried to warn him about the glass, he flipped me off with his middle finger, before once again slamming the glass. As the situation continued, he moved around the house, pounding doors and ringing our door bell non-stop. I found my youngest son hiding in the closet sobbing and terrified of his brother, who at the time, wasn’t acting like his brother.

I felt my body triggered back to a state that’s all too familiar. My heart was pounding and I was scared, scared of my own son. Once he was back inside, I could tell he still wasn’t himself. He was pacing, looking for something to destroy. At one point he was carrying the Playstation over his head, taunting me with threats to destroy it. When I asked him what he was doing, he would say in a sarcastic tone, “I don’t know.” He seemed to be enjoying the power he had over me, he could tell I was afraid.

And I was. I was scared because I didn’t know what he was going to do next. I felt responsible for keeping everyone safe, yet I didn’t know how to stop this spell over him.

I felt helpless.

After pulling a guitar sting off of a broken guitar, he walked around whipping it until I grabbed him and brought him to the ground. From there I held him in place. Thankfully not much longer my husband called and was able to coach him to the shower. He gave him the choice. “Get in the shower to calm down, or we’re going to call the police and have you brought to the hospital.”

He got in the shower.

From there I was able to give him his melatonin which slowly wound him down. He even wrote a note to his brother apologizing and expressing his love—all on his own. Thirty minutes later, I was tucking him into bed with his prayers like every other night.

Then I cried my eyes out.

Lord help me get through the summer...



Tuesday, June 25, 2013

Mark Your Calendar

For those interested, Stanford Bipolar Disorders Clinic is having their The 9th Annual Mood Disorders Dialogue Day on Saturday, July 27th at the Frances C. Arrillaga Alumni Center, 326 Galvez Street, Stanford CA 94305. The registration link will be available in early July at their website: http://bipolar.stanford.edu. For questions please contact Natalie Portillo at 650-498-4968 or nport22@stanford.edu.

I’ve gone the last 3 years and have learned something new at every event. It’s definitely worth going to!

Monday, June 24, 2013

More than Man’s Best Friend: A Guest Post from Jan

As a special treat to my followers who have furry family members, I have a guest post from Jan who after sharing with me her experience with her dog and how she’s helped their children, I asked her to share her story with all of you. Enjoy her guest post and please leave her a message below or share with us if you too have had a similar experience with a family pet, she’s looking forward to your feedback!

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Hi! I am a mother of 2 boys on the spectrum. My husband and I have been together for 20 years now. My kids are ages 10 and 13 years. Each has issues with anxiety, sensory integration dysfunction and possible mood disorder.

My eldest internalizes everything, while my youngest is explosive. Only my youngest has been diagnosed. He went through some difficult years, starting at age 6 and was prescribed Zoloft, for anxiety. After 2 weeks he reacted badly and was hospitalized. His rages had worsened and he threatened to harm us and himself. He asked us to take him to the hospital, so the doctors could help him. His doctor told us he has autism. Then he explained the spectrum and told us that he has Asperger’s. He was prescribed Abilify, while he was weaned from Zoloft, then switched to risperidol. While on the drug, his rages lessened, but he was still very edgy and explosive. After 6 months, while being weaned off of risperidol, he had a bad reaction and was taken off, cold turkey.

Through all of this we received some help we never expected. The year before our son was hospitalized, we had adopted a 10 month old puppy. Her kennel card read, Shepherd Mix. She definitely comes from a long line of mixes! We adopted a dog, because my boys were terrified whenever we were near one, and I wanted them to feel comfortable. I never imagined how much she would help us!

Our youngest was immediately drawn to her. He didn’t like her to be alone in her kennel, so he would sit in there, with her. Both boys took her to training lessons, and walked her daily. They played with her, fed her and groomed her. It didn’t take long to bond!

When my youngest would rage, we would have to restrain him, by sitting over, or behind him, while holding his arms. The dog was always right there, in protective mode. We thought it was because she thought we were harming him. Later, once his rages lessened, it became harder for us to recognize when he might become upset. Our dog still had the same reaction. She would stand over him, or sit on him and bark at us. Sometimes she would nip at us. At the time, they both weighed about 60 pounds. I’m not sure if it was her interrupting him, or her weight on him, or her concern for him, but she always made him feel better.

Now, my youngest does such a good job controlling himself and his emotions, it is hard for us to recognize when he will become upset. Our dog still alerts us. We usually notice as we try to leave the house. She stands over him or sits on him and barks as he tries to put his shoes on. That is when we realize he has a project, test or field trip at school and might rage. It can be anything though. A trip to an amusement park, a family gathering, or even a trip to the grocery store. It is helpful to know we need to take extra measures to help him that day. Sometimes it’s just remembering he might need extra help. It is easy to forget how hard he is working, every day, just to appear “normal”. It’s much nicer to be gently reminded, by our dog, rather than an incident once we are away from home.

Our dog is a huge part of our family. She is the best thing that ever happened to us. She helps our entire family, every day. She helped the boys recognize others’ feelings and empathize. By nurturing her, they gained confidence. She even helped with eye contact. It’s funny, they feel comfortable looking into her eyes, but she doesn’t like that! She lets them know how she is feeling, by body language. They know when she is happy, sad, angry, or afraid. They know they can change how she feels, by feeding, walking or playing with her, even comforting her when there is a thunderstorm.

Thank you Mama Bear for the opportunity to share our experience. I’m interested if others have had similar experiences with a pet.

* * *

Thank you so much for sharing your story Jan. Since my husband and youngest son are allergic to dogs, we aren’t able to experience this, but I can share that whenever my oldest is near his cousin’s dog he perks right up, their dog is a natural mood booster! To this day, my boys talk about the day they grow up and move out and get a dog of their own. I always respond with, “I hope you do.”

Please share with us, we’d love to hear your experience with pets in your life.

Tuesday, June 18, 2013

Post worth reading...

I came across this blog post through BlogHer and thought it was worth sharing with you. Many of you who are currently in the trenches and on your knees, as a mother watching their child suffer with a mental illness may find a connection to her words, the kind that reminds you that you are not alone.

* * *

How to Keep it Together
When Your Child is in a
Mental Health Crisis

by MavenOfMayhem

http://www.blogher.com/how-keep-it-together-when-your-child-crisis-or-not


Sunday, June 16, 2013

Happy Father’s Day

Today we had a wonderful Father’s Day. Our boys spent over two hours planning a special celebration party for their “Pop”. Our oldest son created a slide show that he played on the tv with images of their dad with cute drawings and words they created using their DSs. Then our middle son sang him a song while playing a guitar—yes, I did tear up a bit since it was so sweet, so did my husband. Then our youngest son organized a milk cap guessing game from his milk cap collection “Guess how many caps in the container”, along with a musical chair game played with stuffed animals. For the finale, they called for a family group hug around their “Pop”. It was so incredibly precious. I remember being in the center of the family hug, surrounded by my smiling boys and feeling pure happiness thinking... never forget this moment.

* * *

I want to wish all you Dads out there a happy Father’s Day. To the Fathers in my life, my Dad and my Father-in-law, I am so blessed to have you in my life and love you dearly! To my Father-in-law who I know reads my posts and continues to encourage me and cheer me on, I am so grateful for your love and support—it really does make a difference in my life. And to my husband, you are everything I wished for and more. Thank you for being such an amazing Dad to our kids and being by my side every step of the way. I cherish the man you are and the man you are teaching our boys to be. I love you beyond words...

Thursday, June 13, 2013

Round Two with the Neuropsychologist

We were asked to take our youngest son back to the neuropsychologist so he could conduct one more test before finalizing his report. The exam basically tested our son’s ability to read expressions and tone of voice correctly.

It was obvious during the exam that he didn’t have a problem with this skill, he even found the test humorous and could easily indicate when someone was grouchier than another. At the end of the test I asked the doctor a few more questions regarding his final diagnosis of anxiety.

I asked him, “What did you think of the information we provided you? (this included the feedback from grandparents and other relatives along with teachers and a close friend regarding what they observed in our son since he was 2 years old.)

He looked puzzled and said that he didn’t recollect this information.

I then asked him what he thought of the school psychologist’s observation? Again he looked confused.

So I asked, “Did you read all of the information we gave you?”

He said, “I admit that I did not.”

Though I appreciated his honesty, I was upset. I felt my heart sink with disappointment. Didn’t he value the input we had to share, wouldn’t that give a more complete picture of our son’s behaviors besides his observations inside a clinical observation room? Plus, I worked so hard on providing him that feedback, the least he could’ve done was read it, it would have taken less time than it took for me to wait in the waiting room that day.

Moving on from this disappointment I asked him many more questions in trying to understand his final assessment. He did admit that though he did not see autism, he did see something, but he wasn’t sure what it was. He drew me a picture with a long line and said that a “normal” person would be on the left side of the line and a person with very clear autism (trouble speaking etc.) would be on the right side. He said he would put my son in the middle.

As I sat there I remembered the final thing the doctor said to me before I left the last appointment. He said with a smile, “You should be happy because your son does not have autism.”

I recalled a few days later when I took my son to the yogurt shop where we were surprised to see our friends and I watched my son withdraw and go into a total meltdown because, “it’s too loud and too crowded and I don’t want to play with kids.” At that moment I chuckled as I thought of the doctor’s final comment, thinking to myself, I don’t feel so happy. My son has challenges, similar to those with autism, yet he can’t get the help those kids get. Instead of occupational therapy for sensory issues, I was told to read a book to learn how to help him fit in.

As I explained this experience to the doctor, I told him, “He may not have autism, but he has a lot of challenges and he needs some help!”

With that he said that he would request in his report that the school evaluate him to see if he qualifies for occupational therapy, but warned me that he may not be severe enough to qualify. Considering our school district, I already know what the outcome will be—no occupational therapy.

The doctor then explained that he thinks that the underlining cause for all of my son’s symptoms is a mood disorder.

Ah.... a mood disorder, welcome back old enemy.

He explained that maybe the reason that our son is showing these autistic traits, especially in the “real world” is because his moods affect his ability to function. His depression and anxiety shut down his desire to be social, makes him cling to routine and meltdown over transitions. It also intensifies his sensory expereince and affects his ability to focus and function in everyday tasks. Which is why during the assessments, which were conducted in a room free of all outside stimulus, he appeared to communicate well, have good eye contact etc. He also said that when a chid has a highly focused interest, as seen in kids with high functioning ASD, they do not take electronics into consideration. So my son’s intense interest in the Minecraft computer game was not considered in his assessment.

He also told me that along with therapy, I should look into the Social Communications Disorder (as mentioned in our last meeting) and also NonVerbal Learning Disorder NLVD. But he felt pretty strong that mood issues were the underlining cause.

I asked, “So this is a lot like what my oldest has, except that it presents itself differently?”

He said, “I couldn’t have said it better.”

* * *

It’s been 2 weeks since this appointment. We met with our psychiatrist yesterday and he acknowledged how hard it is for kids who have autism traits, but lack the severity to get services. He recognized that they still need help so he told me to find out on my own how to help him, using treatment for Asperger kids as a guide. He also said that he wasn’t convinced that our youngest would struggle like our oldest had, instead he felt that he would do well as he matured.

Would do you think?


Sunday, June 9, 2013

In His Own Words... My Son Shares His Experience with Bipolar Disorder

Tonight I had an enlightening conversation with my oldest son. Most of our conversation I’ll treasure for me alone, but he’s given me permission to share with you, in his own words, what it’s like to have a mood disorder.

My son shared that prior to medication, most of the time he felt sadness. The kind of sadness that makes you want to end your own life. He also felt anger a lot and that would lead to rages. Other times he would feel happy.

He found that the hardest experience to describe was his quick changing moods. There was a time when his moods would change from happy to sad in a matter of moments. It would scare him and often he would cry out for help to make his moods stop changing, or he would bang his head on the ground hoping to disrupt it. But he said that trying to explain what it felt like is impossible, “it’s like seeing something so beautiful that there’s no words for it, only this wasn’t beautiful, but mysterious.”

He also talked about seeing “shadow men” hallucinations, I could tell this made him uncomfortable to talk about, as he said, “It still freaks me out.”

Then my son’s eyes lit up as he explained that he had another feeling he felt maybe five times in his life. He called it, “crazed with power.” He said a feeling would come over him that made him feel like he had one thing that he needed to do, “to destroy and get rid of anything in my path that would try to stop me.” He said it was like he was a robot programmed to do one thing and he couldn’t do anything else. “If you tried to stop me, I would hurt you.”

He explained that this crazed power was fun, but dangerous. He said he would feel overpowered with energy and that he felt like he could do anything. He said that this kind of power might make you want to jump off a cliff, but you wouldn’t have the understanding that it could kill you. He also described it as a feeling of being stronger than anything, he said that he felt like he could stand in front of a moving train and not die because he would be stronger than the train coming at him. He said he felt like he could survive anything, like he had an “infinity of lives.”

When he was experiencing this crazed power, he said that he didn’t pay much attention to those around him, he said, “It’s like everyone else was a speck of dust and I had to get through them.” He also said that he would take down anyone who stood in his way. That’s why he would rage against me.

In comparing his energy level during this time, he explained that if a normal person ran a marathon they’d start to wear down and tire out. But when he was feeling his crazed power, he felt like he could run two marathons and it would have no effect on his body—he’d never get out of breath. He felt like he could always do more, more, more... in the end he described it as “infinite energy.”

My son shared that sometimes he could sense these moods coming, but he didn’t know what to do with it, “should I lock myself up or tie myself down?”

I may not have understood it at the time, but I saw this “crazed power” he talked about. There was a particular look in his eyes. I could also feel an energy coming off him. I could feel it in my gut, it always made me anxious. Even today if he raises his voice I can feel my body tense up, fearfully anticipating the return of this negative energy.

Thankfully, since he’s become stable on Lithium, these symptoms are almost gone. As he said, “I feel like a normal kid most of the time with normal kid problems.” As his mom, I would agree.

* * *

I’m so incredibly impressed with my son’s ability, at only 12 years, to put into words what I’ve witnessed for years. When he was younger, he didn’t have the cognitive ability to express these experiences, but now that he’s older, I’m able to learn so much more about what he experiences as a child with a mood disorder (Currently diagnosed with Bipolar Disorder NOS). 

I wanted to share with you—with his permission of course—so that you too may understand what your child may be going through, especially if they’re younger. I hope people can understand that our kids don’t desire to be oppositional, they really want to do the right thing and please their parents, but our kids are battling a war inside their brain. As we like to say, “the brain is making mistakes and there is no control.”

After hearing what my son has dealt with for so many years, I can only say that he’s absolutely amazing. That fact that he’s been on the honor roll his entire first year of middle school, that he’s making new friends and overcoming challenges and ultimately thriving under these conditions is miraculous. I’m so incredibly proud of him.

Tonight we ended our long talk with a hug and laughed as he could barely fit on my lap, with his knees scrunched up to his chin. He may be as tall as me, but he’ll always be my little man.



Friday, June 7, 2013

MRIs for Bipolar Disorder

Research is taking one step closer towards having an MRI brain scan to test for Bipolar Disorder. The latest study published in Psychological Medicine was able to accurately screen for Bipolar Disorder in 73% of those tested. This progress brings much hope to those who spend years suffering through symptoms as they’re misdiagnosed and treated with the wrong medications. As a parent, this would be a dream, to know with certainty that we’re making the right decisions for our child’s care would be such a blessing. Unfortunately we aren’t there yet, so be careful with organizations promising a diagnosis with a brain scan of any form, but be hopeful that we’ll see this in the years to come.

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Tuesday, June 4, 2013

Cautiously Welcoming Summer

Summer vacation started one week early this year due to our school’s cutbacks.

I read on Facebook other parents celebrating the start of summer, but for me, I cautiously welcome it.

Summer traditionally has been our hardest season since we have more behavioral issues brought on by boredom and lack of structure. Both of which I try my best to eliminate, but nothing beats the distraction that school provides.

As the final week of school approached my oldest son showed his typical mood swings, for him, facing the end of school brings tears and irritability. Thankfully as he matures, I’m able to remind him of this transition and help coach him through it.

Experience. That’s one thing I’m thankful for. As the years go on, now over 5 years, we’re better able to predict challenges and prepare for them before they happen. And when they do happen, we can remind our son that there’s light at the end of the tunnel. We can remind him of past successes and feel confident ourselves on how to get through familiar challenges. I’m sure there’s new stuff coming our way, but I remain thankful for the small successes.

Tonight it’s experience.