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.

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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

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.

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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...

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.”

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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?

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.

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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.

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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Medical Daily
By Ashik Siddique | Jun 05, 2013 07:13 PM EDT
http://www.medicaldaily.com/articles/16251/20130605/bipolar-disorder-diagnosis-soon-include-mri-test.htm

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.

A Final Diagnosis

I have a final diagnosis.

My youngest son was diagnosed with an Anxiety Disorder.

The doctor told me that though he did have features of autism, he felt that the underlining cause for all of his symptoms was anxiety. He clarified that this is something our son was born with and not something caused by his older brother’s rages. He said it was wired in him from birth and will continue to be a struggle for his entire life.

He also concluded that he does not have ADHD, which is something that the first neuropsychologist diagnosed him with. He explained that all of his inattentiveness and impulsiveness is due to his high level of anxiety he’s constantly experiencing. He said that my son’s anxiety is so high that it affects all aspects of his life, which would explain his sensory issues, his social issues, his rigidness and his trouble with transitions. He explained that his anxiety keeps his body so wound tight that it doesn’t take much to set him off, it can be a room of kids talking or a change in toothpaste.

When I clarified some of his behaviors the doctor said that it was sounding more like OCD, but he didn’t think it was necessary to give him that diagnosis since it’s also an anxiety disorder. Instead, he warned me to keep an eye on this as he gets older.

He told me that the problems we’re facing today will change as he gets older. At this age we may have trouble with him staying in the classroom, but as he gets older, he may refuse to date or even leave the house.

When I asked him how his restrictive interest in the game mindcraft (refusing to play with any other toys), his long monologs about mindcraft and his echoing of statements fit into the diagnosis of anxiety, he only said that he didn’t observe these behaviors during the evaluation and if it was autism he would’ve seen it then.

When I asked him about his monotone voice, the doctor acknowledged that he too picked up on that, but dismissed it.

When I asked him about how he has no filter and will tell teachers they are boring or other parents that he doesn’t like their kids, how he doesn’t easily engage in back and forth conversation, or how he walks the playground talking to himself instead of playing with other kids, the doctor admitted that our son has odd behaviors that can affect him socially and that as he grows these may become more apparent. He said that we may need to assess him again in 2 years to see if he has learning deficiencies in social skills. He referred to the newly created Social Communications Disorder, which according to John Elder Robison of Psychology Today:

Social Communication Disorder is described (in my opinion) as a sort of “autism lite,” where the person has some features of autism but not enough to meet the diagnostic standard under the new definition.

Robison points out the concern many critics have about this new label:

Here in America, it’s time to open a discussion about Social Communication Disorder and where it belongs. If it’s part of the autism spectrum or “autism lite” we need to make a decision about what services will support people with the new diagnosis. Otherwise we risk doing that population a great disservice – giving them a diagnosis that leaves them nowhere, with no indicated services or therapy.

So basically, this is just another label, but at this time it doesn’t offer much support.

In the meantime, the doctor told me that a certain amount of oddness is accepted because he’s still young. Unfortunately, his classmates don’t agree.

He then recommended a book called, Helping the Child Who Doesn’t Fit in. Here’s how the book is described:

Remember the kids who just didn’t fit in? Maybe they stood too close, or talked too loud. Whatever the reason, we called them hurtful names, and they never understood why. Now, clinical psychologists Duke and Nowicki call these children “dyssemic,” and offer some ideas of how to help them.

Dyssemic children cannot readily comprehend nonverbal messages, much as dyslexics do not correctly process the written word. Yet nonverbal communication plays a vital role in our communication with others, and children who misunderstand or misuse it may face painful social rejection. In HELPING THE CHILD WHO DOESN'T FIT IN, Duke and Nowicki show parents and teachers how to assess the extent of a child’s problem, as well as how to help the dyssemic child.

Our doctor also mentioned that the medication our son was currently taking, Prozac, is a mood stabilizer (this was news to me) and that even though he wasn’t diagnosing him with a mood disorder, it would be helpful if he ever developed one as he got older.

He then recommended regular therapy. He told me it will be a fine balancing act in creating an environment that’s predictable enough that it allows him to function, but also doesn’t become so rigid that it just reinforces his anxieties, something he said we’ll definitely need help with.

He also said that I should get occupational therapy through the school to help him cope with his anxieties while there. But unfortunately, my school has already denied him getting OT because he doesn’t have an IEP, something they denied because he isn’t 2 years behind. My plan was if he was diagnosed with autism I could go back for an IEP, but now I don’t know what I’ll do to help him there.

At the end of the appointment I asked the doctor which DSM guide he was using for his assessment, and he said, “I’m using the new DSM-5 and support it completely, I could go on for at least 5 hours about why I prefer it to the previous version.”

So what do I think of all this?

I have mixed feelings. I accept that he has an anxiety disorder, this came at no surprise since we already knew he had this. But so does 75% of children with Aspergers. What surprised me was that all of his struggles were based on anxiety and not Aspergers, especially since he had what our Neurologist described in December as “textbook autism spectrum disorder.”

Do I wonder if this outcome is because of the new DSM released this month and the fact that Aspergers Disorder as a diagnosis was removed? I would be lying if I said I didn’t.

It’s also possible that the old DSM was faulty and that kid’s like my son should’ve never been diagnosed with Aspergers in the first place.

I will always wonder, but that doesn’t change reality.

The reality is that he has anxiety. We’re already treating this with medication. We’ve been advised to get him therapy to help him cope with his challenges and teach him social communication skills so he can fit into society.

If he was diagnosed with Aspergers, I don’t know if it would be any different, except we would have more support and services available.

Either way, my husband said it best, “At this point it doesn’t matter what they call him, in the end it’s up to us to help him, and that’s just what we plan to do.

Nervous for the Big Day

Tomorrow is the big day, one we’ve been waiting for ever since we met with a neurologist back in December. It’s when we hear the results of our youngest son’s assessment.

I have to admit, I’m feeling pretty nervous. With all the changes in the DSM, I’m uncertain as to what he’ll determine. Which is kinda strange when you think about it. Kids diagnosed a month ago were assessed with different criteria than they are today. With that said, I’m not even sure which guide our doctor is using for his assessments. Is there a transition period before the new DSM is put into place? A few months ago I asked one neuropsychologist how the changes in the new DSM were going to affect cases like my son and she said that the professionals in her own field were wondering the same thing.

I’m also nervous because when my son participated in the 2.5 hour testing, which I was able to observe behind a one-way mirror, I was concerned that my youngest wasn’t showing all of his traits in the limited time. He seemed more engaged than he typically is and things like his echoing of statements didn’t occur until we were back home after the testing was already complete. As a parent, you want the doctor to see all of the symptoms you see, but somethings can’t be reproduced in a clinical setting with a single adult in a room with all white walls. I wish they could’ve seen him interacting with other kids, or losing at a game or even going through transitions. But I’m sure the waiting list would be even longer if they spent that much time with each child. So it leaves me guessing on how this is all going to play out.

In the end, I’m hoping that the doctor recognizes what we see and that his final assessment makes sense with our experience. I also hope they can offer us some help. That’s what matters most.

Experiencing Pure Bliss

Today I experienced pure bliss. We went on our very first family bike ride. Over the years we thought about doing this, but it was always too complicated for one reason or another, so Dad took one or two kids on a ride while I stayed back with the others. Well last night my oldest declared, “Mom, you need to buy yourself a bike!” So after almost 20 years, I found myself on a bike, along with my entire family as we rode the nature trails surrounding our small town.

We kept our expectations low and our planned destinations short, but the kids did great, no complaining or fighting and our youngest was now strong enough to keep up with the others. In fact, he was so confident with his bike that he coached me on how to ride a bike since he knew it had been twenty years. I didn’t have the heart to tell him that you never forget, instead I just enjoyed his thorough instructions.

“Remember to keep your hands on your handles at all times Mommy.”
“Peddle your feet fast to go faster Mommy.”
“You’re doing a good job Mommy!”

After a while we took a break along a creekside where the boys exposed their toes to the ice cold water, followed by their entire bodies as they one-by-one decided to go a little deeper.

As our journey continued back into town, we stopped at a local restaurant and ate lunch outside, I laughed as I watched my oldest and youngest, who are notorious for being very picky eaters step outside their comfort zone and try new foods, even shrimp!

At one point my husband and I looked at one another with smiles, in complete disbelief, that our kids were being so amazing. We were experiencing true family time.

For the rest of the day we all walked around feeling so happy as our kids announced, “We should do this everyday!”

It was pure, beautiful bliss...

DSM-5 and The Critics—God Help Us All!

The new DSM-5 guide is being released this month, it’s the first major revision in 20 years. For those unfamiliar, it’s basically considered the bible for psychiatric disorders, it’s where labels of mental illnesses are defined. It’s used by doctors to diagnose their patients, by researchers and by insurance companies for billing purposes. So it’s a pretty big deal.

For some time now, there’s been a lot of controversy over the new revised guide from labels being removed to new labels being added. For example, the Aspergers label has been removed and those with these symptoms should now fall under the new Autism Spectrum Disorder label. According to Slate.com, a study by Fred Volkmar, director of the Child Study Center at the Yale School of Medicine has already predicted that up to 75% of those previously diagnosed with Aspergers would not qualify for the more restrictive label of Autism. So families fear that those kids will now lose services or if newly assessed, like my son, may receive none at all.

Then there’s the new label for kids with anger issues who were once previously diagnosed with Bipolar Disorder, they will now receive the new label of Disruptive Mood Dysregulation Disorder (DMDD). The media identifies this with kids having severe temper tantrums. People now worry that kids will get unnecessary labels and those kids previous labeled with Bipolar Disorder will now be lumped into this category. How will insurance companies decide to cover their meds and necessary therapies? Not to mention how schools will address it.

This is just a sneak peek of what the controversy has been about. But now as the DSM-5 is released this month, there’s a growing backlash. One of the most notable is the National Institute of Mental Health (NIMH), the world’s largest funding agency for research into mental health, has indicated that it is withdrawing support for the manual. This is serious stuff folks!

In salon.com, Temple Grandin proclaims that the DSM-5 sounds like diagnosis by committee. She concludes:

Twenty years from now, I think we’re going to look back on a lot of this diagnostic stuff and say, “That was garbage.” So as I see it, we have a choice. We can wait twenty years and several more editions of the DSM before we start to clean up this mess. Or we can take advantage of the technological resources that are beginning to become available and start phase three right now.

 I choose phase three.

And the critics go on and on...

So what does that mean for us? For our kids? How will this affect my son’s assessment that he’s currently participating in? Will we look back and think this was all garbage? Will we still be confused years later? I’d like to think that we’re doing the best we can with what we know today, but it doesn’t help when the professionals don’t agree. Who do we trust?

The more I read about symptoms in children, the more things seem similar. Sometimes I laugh when I read blogs on one illness because I’d swear it was written for another illness.

It makes me wonder how wide is that spectrum? Could bipolar, schizophrenia, autism, ADHD, ODD, PDD, Anxiety, Depression etc. all be on one large spectrum? It seems there’s a lot of the same medications used to treat these different illnesses and new research is showing some connections between them. 

It makes me wonder, what will we think when we look back on this 20 years from now?

Our precious children are depending on us to make the best decisions. 

God help us all.

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The NIMH Withdraws Support for DSM-5

http://www.psychologytoday.com/blog/side-effects/201305/the-nimh-withdraws-support-dsm-5

Temple Grandin on DSM-5: “Sounds like diagnosis by committee”

http://www.salon.com/2013/05/18/temple_grandin_on_dsm_5_sounds_like_diagnosis_by_committee/

The DSM-5 is here: What the controversial new changes mean for mental health care

http://www.foxnews.com/health/2013/05/21/dsm-5-is-here-what-controversial-new-changes-mean-for-mental-health-care/

You Do Not Have Asperger’s
What psychiatry’s new diagnostic manual means for people on the autism spectrum.

http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/autism_spectrum_diagnoses_the_dsm_5_eliminates_asperger_s_and_pdd_nos.html