Tuesday, October 30, 2012

Remarkable Child

I pretty much bawled my eyes out the first time I saw this video. Ok, who am I kidding, I cry every time I see this! Jodi DiPiazza, a remarkable child with autism, gives an amazing performance with Katy Perry. You’ve gotta see this!

I wish you all a happy Halloween and hope that you can create special memories without all the challenges the holiday can bring. For us, we hope to have our little one go trick-or-treating for the first time. His fears have kept him home in the past, but this year he says he’s ready to do it! Wish us luck!

Link to video:

Sunday, October 28, 2012

Let the Assessments Begin

This Monday morning I have a meeting with the principal and teacher of my youngest son so we can begin the journey of trying to help him. I’m hoping that they’ll agree to do some academic testing to see if my son has any struggles or if he’s just bored. Already I’m prepared for a little challenge since this principal has shown in the past to be resistant to testing and I’m sure he’s learned that I can be a little persistent. Should be a fun meeting (eyes rolling)...

I’m also preparing for my youngest son’s first psychiatrist appointment where the doctor will do an assessment to investigate the “voices” and other anxiety symptoms. Since this is our first appointment, I’m prepared to expect little since we’re just starting out. This is where experience helps, I’ve learned not to expect so much from the doctors in the beginning. I laugh when I think back to our first appointments with my oldest where I thought coming prepared with mood charts and video of behavior that I would leave with a clear diagnosis and treatment plan, boy was I wrong. Obviously now, I don’t have such unrealistic expectations and understand that this is a long process and patience is required.

On a positive note, we went to a fall festival at the boys’ elementary school and I got to speak to some of my oldest son’s former teachers who all were so excited to hear about how he was doing in middle school. One in particular made my heart swell when she gave me the biggest hug and said, “As a teacher there are always a few students you never forget. For me, your son is one of them. I think of him often and hope he’s doing great. I’ll never forget him, he was very special.”

Thursday, October 25, 2012

For the First Time

Yesterday my oldest son wore jeans for the first time since kindergarden. That’s 5 long years of sweat pants! If you have a chid with sensory issues you’d understand what a big deal this was. For him, the scratchy, tight material of denim was like sandpaper on his skin, over time it became unbearable. But thanks to some hand-me-down jeans we got from my cousin (Thanks T!) we were able to pull them out when we realized that all his sweatpants were in the hamper. At first he was hesitant, but I reminded him that this was the year for “firsts” and thanks to his stability all things from the past may be new again.

So he gave it a shot, and it turns out, he loves them!

I know it seems ridiculous to get excited about something so small, but what it represents is so much bigger. Our son is feeling better.

Tuesday, October 23, 2012

DSM Guide and a New Diagnosis for Kids

I read an article today in the Wall Street Journal about the revision of the DSM Guide (The scientific bible that doctors use to diagnosis mental illnesses). I have to say, I was disappointed in the latest news. The article exposed the battles between scientists over whether or not a new diagnosis will be created to reduce the number of children diagnosed with bipolar disorder. The hope is to provide better treatment for kids who aren’t responding to the typical treatment methods being used today and if anything, collect more research dollars into the field of mood disorders in children.

Hearing about the division among experts, some even quitting over the dispute, leaves me to believe that we’re still a long way off from getting a true understanding of what our children have. Even if they add the new diagnosis to the manual, I’m sure that there will still be a lot of divisiveness over it among professionals. On top of that, if they do add it, there currently is no recommend treatment plan for these kids, so all we’ve gained is a new label.

And what about kids who are responding to current treatment, will they maintain the “bipolar” label?

How will insurance companies respond?

How will doctors respond? I know at our previous HMO one of our son’s psychiatrists told me that she would no longer diagnosis children with bipolar disorder but instead would use this new label only. But does this type of blanket approach really help kids, or does it just reduce the number of kids diagnosed with bipolar disorder? In the end, she admitted that the medications used would be the same currently used for bipolar disorder. So in this case, will any good come out of this?

There’s so much to consider...

The Long Battle to Rethink Mental Illness in Children:http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html

Sunday, October 21, 2012

What I Fear Tonight

I spoke with our oldest son’s psychiatrist about my little one’s “voices” and he first reassured me that this is fairly common in the kids that he sees and that he doesn’t think my youngest child is experiencing psychosis, but based on the running list of things we’re seeing from his anxieties to “the voices”, he does think it’s time to do an assessment.

You know what my first thought was?

I hope he doesn’t recommend putting my youngest son on medication.

Does it sound strange that I would think this since I’ve seen first hand the miracles of medication for my oldest?

I would never want to deny my children the opportunity to have a more fulfilling life, freed of symptoms that bring them harm, yet if confronted with the recommendation to medicate another child, I would feel scared all over again to take this step. I’m well aware of the risks involved with medication. I take it very seriously. Every night I pray over my oldest son that the medications he’s taking would do only good and no harm.

I don’t want to pray this over two of my children.

I know I may be getting ahead of myself, I just wanted to share that this doesn’t get easier.

Thursday, October 18, 2012

Little One has Voices Inside His Head

This past weekend we experienced a first with our youngest son. After losing a game with his brothers, he became upset, which is pretty typical these days. As I was consoling him, he yelled out, “Stop laughing at me!” I jumped to his brothers defense and said, “Honey, your brothers weren’t laughing at you.” He responded, “I know, it’s not my brothers, it’s the voices inside my head.”

I immediately tried asking him about it, but he responded quickly, “I don’t want to talk about it!” This was the same response he gave when he shared he had bad thoughts in his head about a month ago.

So the next day I tried to ask him again, hoping that once removed from the situation he would be more comfortable. At first he was very hesitant. So I reassured him that he wouldn’t get in trouble for anything he said and that nothing bad would happen by telling me.

Appearing reluctant, my little one explained that he had voices in his head. Not Mommy, Daddy or his brothers, but voices of other kids, “strangers”. He told me that they call him bad names like idiot and dork and laugh at him a lot. They also tell him to do bad things like steal money from my purse, to beat up his brothers or to destroy property. These are his words as he described it. When I asked what would happen if he didn’t do the bad things, he said he would get a headache. He said that the voices make him feel sad or scared. When I asked if the voices were real, inside the house or inside his brain, he said that they were inside his brain. He said sometimes they are just one voice or sometimes they’re a group of voices.

Hmmm... that’s unsettling.

We definietly can see the correlation of what he shared with me and his behavior lately. It isn’t uncommon for him to run out of a room screamming, “Stop laughing at me!” when the family is laughing together (never at him). He’s quick to assume that people are putting him down when they aren’t and overreacts to a lot of situations. He’s also been putting himself down a lot saying that he’s a horrible person.

I gently let him know that the voices weren’t real and I would try to help them go away forever, but he needed to let me know when they tell him to do bad stuff or laugh at him. Later that day, he came to me twice about the laughing inside his head, I told him that we could stop it if we sang a song together. He was very willing to participate and asked, “Can we sing You Are My Sunshine?” We did and it seemed to do the trick.

I spoke with his therapist and right now she thinks this is related to his anxieties. She thinks the voices are maybe his own thoughts and feelings that he’s struggling with. So we’re making a big effort to give him lots of positive feedback, remind him constantly that he’s a great kid with hopes to override any negative thoughts he has inside.

It does concern me that the voices were described as being “strangers”, sometimes more than one and that they make him feel sad or scared at times. Poor guy, no wonder he seemed so stressed all the time.

I’m glad that he finally opened up and shared what he was experiencing. Now if I can just figure out how to make it all better—because that’s what mama bears do!

Tuesday, October 16, 2012

Palilalia Vocal Tic

If you’ve ever watched the tv show The Middle you’re familiar with Brick (the youngest child) and his quirky way of repeating his own words in a whisper. For example, he’ll say, “I’m going outside to play.” Then whisper, “to play.” I’ve always been fond of this character, maybe because my youngest son also whispers after making a statement.

Until this past week, I thought this pattern of speech was unique to my son and this character, but on a recent episode of The middle they outed this behavior as a “vocal tic.” So of course I ran to the web to see what I could find and sure enough there’s a vocal tic called Palilalia that describes this behavior. I also found a lot of other parents describing the same exact whisper in their kids. Don’t you just love the web!

Palilalia is described as being the involuntary repetition or utterance of the same word or phrase, often the speaker’s own words. It’s often associated with other conditions such as Tourette’s, Parkinson’s, obsessive compulsive disorder and autism. I imagine my son was using this behavior to cope with his anxiety as he was also showing other signs of OCD during this time. I think these kinds of ritualistic behaviors helped ease his anxieties. Thankfully this speech pattern has almost disappeared, only popping up every once and a while.

It’s interesting to me because my oldest son also had speech issues. When he was in preschool he developed a serious stutter and had to see a speech therapist to overcome it. Even though the therapist at the time thought he would have it to some degree as an adult, he eventually outgrew it.

I have to admit, no matter what you call it, I’ve always thought my son’s “whisper” was kinda cute. I’m sure I’ll miss it when it too disappears forever.

(Sorry no video clip of the actual whisper, if you want to see it, look on YouTube and you’ll see lots of Brick’s whispers. I was trying to avoid copyright issues and used only clips provided by ABC.)

Sunday, October 14, 2012

Hello Hypomania

It appears our oldest son may have been experiencing hypomania this week in the more traditional form. It only lasted about 2 days but the behavior was noticeable by everyone in our family, including our son.

I first noticed it when I picked him up from school, he was full of conversation, very excited and seemed pretty happy. Of course I enjoyed the positive mood and soaked in all the smiles. But once home, it became more pronounced.

He began talking non-stop about his creative ideas and plans, so much so that the other kids felt annoyed by the behavior and I too have to admit to feeling overwhelmed. At one point, he was in my office pacing back and forth, giving me great details about the plans he had in mind. His movements were so constant that I had to ask him to stand still since he was making me dizzy.

I then commented, “You seem to have a ton of ideas in your head.” He said with a huge smile, “Oh yeah, my brain is full of them! I just can’t stop thinking about them.” I then said, “You seem to be feeling pretty good today.” He responded with an even bigger grin, “Yeah I do, I feel really good!” Then he broke out in giggles and used his hands to cover his grins and laughs, trying hard to contain himself.

This was very unusual for us since we usually see irritability. My husband and I both agreed that his behavior seemed like someone on a drug. He was persistent, intense, full of creativity and plans, it’s like his brain was speeding on the freeway and nothing was going to stop it! He was clearly experiencing a mind altering mood!

As the day progressed, his elevated mood continued. By evening he was making plans to journal all his ideas down in a notebook so that he could eventually get to sleep.

When morning approached he was up earlier than usual and followed my husband around the house with his creative-based conversations. Though they weren’t really conversations since he was doing all the talking. At one point my husband excused himself to the bathroom, but my son kept rambling on outside the bathroom door. By afternoon, he was talking in-depth about the polar coordinates changing in our lifetime while I was trying to blow dry my hair, all cool stuff, but his passion was so over the top.

Then came the crash.

He started talking about school and some difficult moments, then the tears followed. He began breaking down, just minutes after a speech over his love of science, he now was crying in my arms. I held him tight and told him that everything was going to be alright.

We were in therapy about 45 minutes later, by then he seemed to be settled down and has been ever since. The therapist agreed that this was probably a breakthrough symptom.

It’s funny, even though my son has a working diagnosis of bipolar disorder, I don’t hold on to that diagnosis as something final. Especially when he has stability for long periods of time. Then I see this kind of behavior and think... maybe this really is a bipolar illness.

After all we’ve been through, is it strange that I still think this way?

Do we ever feel ready to accept a diagnosis?

Thursday, October 11, 2012

Are You Glad Your Child has a Label?

Visit NBCNews.com for breaking newsworld news, and news about the economy

This week the TODAY show did a segment on whether or not labeling your child is helpful or detrimental.

Now in a perfect world I would absolutely not want my child labeled, but under our circumstances, yes, I’m very glad my child has a label, even if it’s a “working diagnosis”, it serves our purpose.

First, without the label we would still be without medication. Being that medication has been the single most important step in helping our son, I don’t for a minute want to go back to those years where he was falling apart everyday. If anything, I wish we had the label sooner and could’ve avoided all the pain and hardship our son has experienced such as the loss of friendships, the destruction of his self-esteem, the physical pain of his symptoms and the loss of what was suppose to be his childhood. Not to mention the suffering his family has experienced.

Second, without the label we would still be in pointless therapy sessions that promise that all of our problems would be solved if we established yet another sticker program, or in the other extreme, we would be facing the false belief that our child was just a bad seed and would end up in prison and there was nothing we could do about it.

Third, without the label we would be without services, such as our 504 plan, which has been the most valuable tool we’ve had to help our son thrive in school. It has given us the Study Skills class that has been key to our son’s middle school success and it has given us important accommodations that allow our son to avoid triggers and remove barriers needed to learn.

And last, the label has brought us understanding and compassion. Having a mental illness is hard enough, but the judgements of others makes it more difficult. With the social circles that we feel safe, being able to share our son’s “label” has given our family acceptance, patience, and love.

Now, some would argue that having a label means that my husband and I are off the hook for our parenting, but I would argue that this isn’t the case. If anything, it’s proven to be tougher. Now that we have a label, we know that we didn’t create our son’s symptoms with bad parenting—I agree that this feels reassuring—but we still face judgements from the outside world. Our son doesn’t wear his “label” on his t-shirt, so when we’re in public, we still get the negative judgments of bystanders who are witnessing a meltdown. Plus, with our son’s label, we have to parent in a whole new way and depending upon what doctor you’re talking to, it may be different approaches. Then unlike your typical parent, we meet weekly with therapists who are evaluating our parenting skills, letting us know where we’ve messed up. Believe me, there is no getting off the hook for us, if anything, we’ve needed to step up our game!

As for the stigma associated with labels, yep that pretty much sucks, so as a parent we’re careful with who we share the label with, while at the same time trying to instill in our son that he has nothing to be ashamed of. If he chooses to go public someday, we’ll be the first behind him. In the meantime, I hope to change the world around us—one person at a time—so that the fear of a label’s stigma is never the reason someone avoids the treatment they need.

So I was curious, how would you answer the question that the TODAY show asked? Has your child’s label been helpful or detrimental?

Sunday, October 7, 2012

An Unexpected Adventure

Today was quite an adventure. I took my oldest son on a drive to a nearby college town to buy an office chair through a Craig’s list ad. Little did we know that this would turn into quite an adventure!

When we arrived at the office building that listed the ad we were greeted by a kind older gentleman who was in the process of closing down his engineering business where he did wind tunnel testing. After a 30 minute conversation, we found that this man had a lot in common with my son. First he was an engineer, which is what my son desires to be when he grows up and he had a love of building and inventing stuff, just like my son!

As the visit continued, we long forgot about the chair, but instead found ourselves in his lab where he demonstrated his wind tunnel equipment. As the loud machine started to take off, he invited my son to stand in the wind as the machine roared. First, I should share that my son LOVES the wind, nothing makes him happier than a windy day. Within minutes the machine was slowly increasing it’s speeds up to more than 60 mph. Then as the machine hit it’s top speed, I joined in the fun with my son as the machine blew100 mph winds into our bodies. I have to say, it was as fun as a roller coaster, we could actually feel our bodies being pushed over while we laughed nonstop!

As our tour came to an end, the engineer shared his struggles as a child, not fitting in, being a little different and smarter than most. He even shared that both of his adult children had Aspergers and never quite fit in with the school system. My son nodded his head in agreement and was encouraged to hear how this engineer went from struggles to success as he lived out his passion.

On the drive home we were both still giddy from this unexpected adventure when my son said, “That man is an inspiration to me, I’ll never forget him!”

I love how God puts the right people in our life—at the right time. I don’t think today was an accident.

Thursday, October 4, 2012

Need Your School Advice!

My Little One’s Storyboard

I recently attended a 4-week baptism class with my youngest. It was a great opportunity to see how my little one responds in a learning situation. Especially since he’s constantly complaining about not wanting to go to school. By the end of the course, I learned that my son is not a typical student and may need a unique classroom to help him reach his full potential.

Let me paint the picture for you. We were sitting in an intimate class setting, basically my youngest and one other child and his dad. As the teacher gave the lesson, she shared information, asks questions and looked for feedback. The other child sat nicely in his chair, giving responses when asked while giving his complete attention to the teacher. My youngest on the other hand started out seated upright, for about 2 whole minutes, then slowly slid down his chair, sometimes appearing upside down in his seat, sometimes on the floor, but always in constant motion. He may have answered the first question, but after that he was completely bored, complaining aloud, “This is soooo boring.” Sometimes his response to the teacher would be a simple grunt or grumble or the defeated words, “I’m dying now, can we go home...”

After what appeared to be a dreadful experience for my son, the teacher then said, “Ok, let’s get a piece of paper and draw what we’re talking about.”

Like a light being switched on, my youngest perked right up and ran to the art supplies. Then in a joyful manner, he drew a stick figure storyboard with a grid of the entire lesson by looking at pictures from his bible.

At the end of the class the boys shared their drawings. The other child presented a sweet drawing of a cross on a hill of grass and blue skies above. Then my son had his turn. In great detail he explained the steps to Jesus’ crucifixion from the point of where Jesus prayed to have it taken from him, to the people yelling at Pilate to crucify Jesus, Pilate’s response and the beatings that followed from the roman soldiers. He then explained how they laughed at Jesus and put a crown of thorns on his head and lead him to the crucifixion. He then finished by sharing how Mary found his empty tomb and Jesus returned.

When he was done talking we all stood with our mouths open, then the other parent looked at me and said, “He has something special, have you ever thought about taking him out of the public classroom and putting him where he’ll thrive?”

(Can I say how much I appreciated this parent’s non-judgemental attitude toward my son! I loved that he didn’t think of my child as a bad kid for not participating well during the lesson, but rather saw that my son had a unique learning style and as he told me, “could do something pretty special someday.”)

Hmmm... It got me wondering. Maybe the reason my son hates school so much is because it doesn’t serve his learning style. I remember even his preschool teacher saying that he seemed to learn differently. While all the class focused on her, he would be doing his own thing in the back of the class, appearing tuned out, but as soon as he was tested, he proved to know all the material, to everyone’s surprise.

So what academic environment does a kid like him thrive in?

Any suggestions? I would love to hear your thoughts!

Tuesday, October 2, 2012

Say it Forward

Today I participated in the Say it Forward campaign that was created by the International Bipolar Foundation to help put an end to the stigma associated with mental illness. Their goal is to reach 10,000 people this year. It’s an easy form, just click the link below, add a short personal message, add the emails you want to send it to and click send! What’s sent is a letter explaining the campaign and a list of myths and truths regarding mental illness. Stigma hurts because it often prevents people from getting the medical help they need. All that’s needed is a little education and you can change the way people think. Please help by being a part of this change by clicking on the link below, it may save a life!

* * *