Thursday, September 18, 2014

Still Looks Like Asperger’s



My youngest son continues to struggle with growing anxiety, but I keep circling back to another feature.

Asperger’s.

I know that the first assessment done a year ago concluded that he wasn’t on the spectrum, but the admission of the evaluator not reading the notes we gave him on current and past behaviors, leaves me with so many doubtful questions.

It’s my understanding that under the new DSM-5 that for the first time, doctors will be allowed to consider a patient’s history instead of only the behaviors present at the time of evaluation. Our doctor chose not to do this, but only evaluated our happy-to-participate child. You see, my son was thrilled to be taken out of school for the assessment because he hates school so much, so he was engaged and willing in every test.

What the doctor didn’t see was my son pushing furniture around when becoming frustrated like he does at school and isolating himself, instead he was engaged.

Did this skew his evaluation?

I tried to share many of the behaviors we’ve witnessed over the years, but he dismissed them all. He even dismissed the school psychologist’s assessment that according to a neurologist we saw was screaming, “Your son is autistic”.

Here is one example:
I explained how our son hates toys and only wants to play with video games and talks in long monotone monologs about the game Minecraft.

The doctor’s response was, “We do not take into account ‘electronics’ as a child’s restrictive play.”

However, just tonight my son talked to my husband and I for over an hour about the history of video games. He showed us a chart he made diagramming all video game consoles dating back to 1973! He described in great detail the success and failures of the gaming systems, naming game developers dating back to the 1980s, such as Namco and Kaname. I haven’t even heard of these companies! He was able to provide interesting facts, such as how the sound production of Pac Man changed from the arcade game to the home system and how the home system had very painful game sound effects that failed to match the original arcade game, and as he described, “disappointing users”. This is a game that he’s never experienced first hand, but learned about on his own through online research. He also went into great detail about different gaming controllers and the difference of 1-bit and 32-bit visual graphics over the years. His lecture didn’t stop there, he even pulled up old commercials on YouTube dating back to 1985 showing me the original console advertisements. This all from a 9 year old boy!

How is this any different than a boy with Asperger’s who knows the history of horse racing. Does the fact that it’s electronics really make a difference in an assessment for ASD?

His voice was monotone and uniquely formal at times. He said, “Come again?” when needing me to repeat a question and acknowledged our leading questions by saying, “Ahhh, I see where you are going with this.” This is definitely unique language to our family and seems older than his age.

Our oldest son shared that our youngest sounded like he was giving a lecture to a class when he talks. He added, “He always sounds like that.”

This conversation was a special experience for my husband and I, we were stepping into his world and he was happy to share it with us. Compare that to earlier in the day when he told me that my questions about his day at school were annoying since they were a waste of his time.

Combine that with him spending recess alone everyday at school playing video games inside his head, not wanting to play with the other kids.

I can’t for the life of me see how this example doesn’t qualify as a restricted interest seen on the spectrum that’s affecting his social skills.

And for that matter, all the other features we’re seeing in his behavior.

Why does it matter?

Well considering that I had to pick him up early from school this week after he was acting out and refusing to participate and that his psychiatrist wants to double his dose of Prozac, I need to know what the underlining cause is of his challenges so that I can take the best course of action to help him.

This is why labels matter.

It points me in the right direction towards helping my little man.

So I’m going to seek another assessment.







Tuesday, September 9, 2014

Creating a 504 Once Again



My youngest continues to struggle in school.

Unfortunately, I’m not sure how to help him. So I’m starting with a 504 plan.

This week he was sent to the office to calm down after acting out in class. It was during the spelling test, he was putting his feet on his desk and refusing to participate. He told his teacher, “I hate school!”

I know for a fact that the spelling words weren’t an issue for him, I tested him the night before and he got them all correct, but still he didn’t want to participate in class.

When I asked him about it he told me that he was frustrated because they already had a spelling test on Monday. It was their pre-test. So in his mind, he had already completed the test.

He sometimes tells me that he hates school since it’s a waste of his time.

“It feels like a prison.”

When I asked him about recess he tells me that he plays by himself a lot. He tells me he’s playing video games inside his head. When I asked him if he would rather play with the other kids, he shrugs it off saying, “No mom, I’m fine, I need my alone time.”

I have a feeling his struggles are going to continue in the years ahead so I think it’s time to get an official 504 plan in place.

Thankfully his new principal agrees, telling me that to him it looks like my son has Aspergers. He also said that regardless of his diagnosis, he’s willing to give him whatever support he needs. I have to say, I’m loving this new principal!

Wish me luck.

* * *

This week I read two great articles I wanted to share with you, check them out!

Jordana Steinberg: ‘A story of overcoming’ mental illness
http://www.sacbee.com/static/sinclair/jordana/index.html

This article is about a girl who goes public with her diagnosis of bipolar disorder. It shares the tough journey through childhood from both the parent’s perspective and her own. It was heart wrenching at times as I read words that struck very close to home. It’s also interesting that the girl’s father is Senator Steinberg who was already fighting for mental health reform before he even knew that he had mental illness in his own family. Her description of her feelings of anger are remarkably close to what my son has shared and the mother’s words felt like my own. This article is worth your time!


“I Am Adam Lanza’s Mother” writer Liza Long: I’m not scared of my son anymorehttp://www.salon.com/2014/09/02/i_am_adam_lanzas_mother_writer_liza_long_im_not_scared_of_my_son_anymore/

This article is a follow up to the recent one I posted. I found it interesting that through her public exposure, they were able to get a diagnosis for her son, bipolar disorder. Since then, he was placed on Lithium and has been doing great. His mother no longer fears him.


Thursday, September 4, 2014

A Mother Shouldn't Have to Choose


From my very first blog post almost 5 years ago, I’ve carried a fear that there’ll be repercussions for writing about my son who has a mental illness. The last thing I ever wanted to do is harm my son or my family. To avoid this, I take steps to protect his identity and act cautiously when communicating with so many of you through email. I would love to post pics to show how my son is thriving, use my real name when communicating to other hurting parents, or respond to national news reporters, but I can’t take the risk of exposing my son.

So you can imagine my interest when I read Liza Long’s original story, “I am Adam Lanza’s Mother”, a post that went viral after the Newtown tragedy. I was impressed with her openness and so very thankful, yet I understood the risk she was taking. Which made her post all the more powerful.

Today she has written another post that exposes not her name, but her consequence for going public about her child’s mental illness.

In her recent article she wrote:
“And so my 750 words became an accidental but powerful manifesto for children’s mental health. In retrospect, I think that one of the things that resonated most strongly with parents in similar situations was the raw emotion in the piece. That’s because I, as the writer, was revealing truths to myself that I had been unwilling or unable to face. My first audience was myself.
So for me, and for many other parents, this is what “normal” looks like. People said that I was brave for telling my story. I did not feel brave; I felt helpless.”
I can relate to Long’s words. When I write to you, I write in a desperate place of feeling helpless. I’m a mom anxiously seeking answers for my child who’s suffering a terrible illness. Looking back, my blog has thankfully been a helpful tool for my son’s stability. I’ve been able to receive encouragement, direction, feedback and so much more from a community of parents who would otherwise be invisible to me.

So having experienced the benefits of sharing my child’s illness publicly, I was outraged to read that Long is now facing the consequences of her openness.

She’s being forced to choose between caring for her sick child or her healthy children.

This is a decision that no mother should EVER have to make.

Would a mother writing about her child’s cancer have to later choose between her children? Why is it any different for Long’s children because her child has a brain illness.

Some of you would argue that it’s for the safety of the siblings, but with the right support and medical care this doesn’t have to be an issue.

Long points out a very important reality:
“Families are afraid to speak up about or ask for help for their sick children, for the very real fear that they will lose their healthy ones, either to another parent (as in my case) or to the state.”
I admit, I was fearful of this in the beginning. I remember sharing with my husband that I was concerned about what I should reveal to the therapist at our son’s initial evaluation for fear that something I would say would bring harm to my other children. It felt a little like walking through a land mind. Would I say something that would make my entire family explode?

The stigma of mental illness is hurting not only those suffering, but the family that’s trying to help.

This has to stop.

If society is so scared of our kids, scared of what they can do to others, they need to pull us off the floor and onto our feet and surround us with support and resources. NOT force us back into a closet of isolation.

People need to know that kids get better when parents can ask questions, seek support and receive care publicly.

Research has proven that children surrounded by love and support have very positive outcomes. If we want to prevent the next tragedy, we need to embrace these families and support them, not tear them apart and ignite fear, forcing them to once again remain silent and helpless.

What is happening to Liza Long will only bring more harm to us all.

Out of fear of losing our other children, mothers will stop taking.

And sick children will not get the care they need.

God help us all.


* * *

I highly recommend you read, The Origins -- And the Price -- of My Accidental Manifesto for Children’s Mental Healtha Huff Post article written by Liza Long, the same writer who wrote, “I am Adam Lanza’s Mother” a blog post that went viral after the Newtown tragedy.

* * *

The Origins -- And the Price -- 
of My Accidental Manifesto for Children's Mental Health
Huff Post
By Liza Long
Posted: 09/04/2014 9:56 am EDT

Sunday, August 24, 2014

Retiring Baby


It’s the night before the first day of school. Everyone is in good spirits, some more excited than others, but it’s good enough. My youngest sat in bed, cuddling his little blue bear, “Baby”. I smiled as I remembered the first time I gave him that bear. He was a small guy, maybe 3 years old. He was going to bed and experiencing his typical nighttime anxiety, not wanting me to leave the room until he was fast asleep. I sat at the edge of his bed and picked up the little blue bear and put it into his arms. He quickly cuddled it. I told him that he needed to be brave to take care of “his” baby. From that day on, “Baby” became part of the family.

As a mom of three boys, this teddy bear was uniquely special. None of my other boys owned a special doll or stuffed animal. It never crossed my mind that all kids didn’t do this, that is until I had all boys.

I remember the panic I felt when we first lost Baby. I thought he dropped him in a craft store while I pushed him and Baby around in the cart. But later that night, I was so relieved to find him safely tucked at the bottom of a closet. I think I cried I was so happy. This bear had become such a precious symbol of my youngest son’s childhood. It had become a treasure.

Fast forward to the night before school this week when my youngest calmly got out of his bed and carried Baby to the closet. Next, he reached up onto his tippy toes and placed Baby on the top shelf of his closet. Then he walked back to his bed, announcing that he was now retiring Baby since he was going into the 4th grade.

And just like that, the little blue bear was put back onto the shelf. He was dirty and worn at the edges, but he represented a job well done, helping my little one feel safe at night for all those years.

My husband heard of this big announcement and declared that we needed a special ceremony to properly retire Baby, so he pulled the little blue bear back down and asked us all to place a hand on him as he spoke sweet words. All the boys giggled at the silly ritual, but I couldn’t help but cry.

My little one was growing up.

I too, no longer had my baby.


* * *





Saturday, August 16, 2014

Summer Bipolar Cycles



Summer is coming to an end. Thankfully the boys did better than expected. I have to say it’s been our best summer yet, especially for my oldest. But we still experienced some highs and lows in what appeared to be bipolar cycling over a period of about 1 week.

It all started when my oldest son woke up in a really great mood. He was so happy about his latest computer interest. He talked excitedly about it, following me around the house, chatting up a storm.

That should have been my first clue.

My oldest isn’t usually this “up”. At one point, he didn’t even skip a beat when I closed the door in front of him to go to the bathroom. He continued on in a very excited tone telling me about all his incredible ideas. Throughout the day he continued to update me about his project like an excited child on Christmas morning.

Then day two started with a big shift.

Hello irritability.

My oldest became very argumentative and was irritated by everything we did. As his mood progressed down this path, I started to see old behaviors. Blaming others, initiating fights, threatening us. It was sadly familiar from his younger days that often ended with rages. As I tried to navigate his behaviors, I kept reminding him that this wasn’t him, but his moods being off. Understandably for him, none of that mattered since it felt real. Mood or no mood illness, he was in a mood to fight.

As the day progressed, I tried to help him identify his feelings as they related to his actions. In a calmer moment, he clarified that, “Everything and everyone is bothering me!”

His mood continued for a handful of days. Thankfully he never escalated into a rage. But after a few days we had a light bulb moment.

My son’s sleep patterns had changed during this time. Instead of sleeping in as he normally did all summer, to our surprise, he was waking up early every day because he no longer felt tired. It even surprised himself.

He was cycling.

Once it dawned on us, it put everything into perspective.

He went from a stable, easy going kid who slept in, to a kid who woke up early every morning and cycled between being too happy, to being very miserable.

It really helped once my husband explained this to my son. I think for the first time my son could see proof of his illness outside of his moods. “It’s all connected Mom! I’ve been getting up early every day that my mood has been bad.”

And just like clockwork, the very first day my son slept in, the planets aligned and I had my son back to normal and he’s been doing great ever since.

Even my son recognized the difference when he shared, “I’m feeling better today, my brother was leaning on me and it didn’t even bother me!”

It made me think of all those years and all those rages so long ago.

He was cycling then. 

It was harder to tell since I saw very little stability to know what “normal” looks like for him, but seeing this recent cycle and the return of old behaviors in such contrast to what we have come to now know as “normal,” has validated for me our decision to medicate.

You may laugh and think, “Validation? You still need that?”

Unfortunately yes. I don’t think I’ll ever stop asking the question, “are we doing the right thing?”

But tonight I can rest in peace knowing that, yes, we are doing the right thing for our son.




Tuesday, July 1, 2014

Lithium 3 Years Later—Life is Good.



I’m sitting at a small, wooden desk, nestled into the corner of a beach house with an ocean view. A cool breeze drifts through my window smelling sweet like honeysuckle. Sunlight is dropping into the meadow creating an orange glow in the tall grass surrounding the house. In the distance I can see a mother deer tending to her babies, keeping watch as they nibble on the golden grass. I can’t complain about anything, life is really good right now.

We are 6 days into our week long vacation. I’ve been present, basking in the love of my family. Are things finally perfect? Nah, we still have the occasional meltdown from our youngest who’s easily overwhelmed and our boys still have a gift for finding the other’s weak spot, but considering our journey, life is pretty darn perfect right now.

The month of July marks the 3rd anniversary of our oldest son being on Lithium. Some of you have asked if we’re still seeing the benefits. I’m happy to share that we are. Our oldest continues to thrive in so many areas of his life and he contributes his success to Lithium. While packing for this very vacation our youngest had a friend over and I warned my oldest about the consequences of messing with his brother’s guests and my oldest quickly reminded me, “Don’t worry mom, I won’t do that, remember the last time that happened I wasn’t on my medication.”

He’s right, I don’t need to worry so much anymore. My oldest, now 13 years old (and taller than me) is getting so much more self control now that puberty is settling in, maturity has been a big helper. Sometimes I wonder if he still needs all his medication, then I’m reminded that he does when I see a small crack in his stability. Recently I experienced this when we were in line at a Starbucks. While waiting for a snack, his blood sugar was dropping and he started to have rapid mood changes. He started crying with tears running down his cheeks and seconds later he dropped his head back with uncontrollable laughter. All while strangers looked on. I haven’t seen these mood changes in years, so it surprised us both to say the least. Once he ate and his blood sugar stabilized, he was back to normal. Like I say, we only see small cracks.

My oldest finished his 7th grade year with honors. But that wasn’t his only success. He also did a class presentation all on his own, in front of his peers (a major victory) and socially he has grown too. He has a girlfriend. You might be surprised that I find this to be a good thing. It’s really helped with his self confidence and self esteem. It’s also exposed him to a bigger group of friends, opening up his world a little and giving him the confidence to go to events such as school dances. Their relationship is very innocent, which makes me happy, but I can see how much he has blossomed because of it. He seems to stand a little taller and feels like he fits in more at school. Years of living with a mood disorder can destroy a persons self esteem, but having a girl tell you that she likes you and knowing that she will stand by your side at school goes a long way in allowing him to see that he has value in this world and it’s more than just his mom who thinks so. Don’t we all need that?

Puberty has infected more than just one boy in my house. My middle son, at 11 years old, is already going through puberty and the changes are even more dramatic. Suddenly girls have become the most important thing in his life and the social circles just took on more importance. Gone is the sweet boy and inward comes a young man flexing his muscles and making sure he has on the best looking outfit as he rides by the house of the girl he loves. And texting, well let’s just say that it’s become his first line of communication. Oh man, my boys are changing so fast. I feel like I can’t keep up!

My youngest is doing pretty good. We’re still working on his emotion control. He tends to scream at a drop of a hat and his anxiety is strong too. We’re also trying to work on his social skills, helping him communicate better and we’ve reduced his electronic time to force him into the real world. Ironically, taking away his electronics hasn’t always stopped him from disconnecting from others. Just the other day I found him lying flat on his back on the couch with his eyes closed. When I asked him if he was ok he said, “Yep, I’m just paying a video game inside my head.” I wish I could say that this was the first time that this has happened.

While sitting on the beach earlier today, I watched my middle son fearlessly dive into the crashing waves and swim into deeper waters with confidence. Trailing behind I watched my oldest who’s always more cautious and my youngest whose anxieties keep him from trying new things, slowly inch further into the deeper water. Both keeping their eye on their middle brother. If middle brother was safe in the ocean, they too would be. I watched as my middle son recognized their timidness and joyfully called out to them to join him. They trusted him and followed.

In that moment I recognized that my boys are not on this journey alone. Beyond my husband and I, their middle brother is helping, along with their grandparents, their aunts and uncles, their teachers, their friends and even their girlfriends. They are surrounded by people who love them, who are helping to lead the way, no matter how deep the waters get. 











Friday, June 13, 2014

10th Annual Mood Disorders Education day


Well it’s that time again, time for Stanford’s Annual Mood Disorders Education day. I’ve had the privilege of attending this event many times and each time it’s a wonderful experience where I meet new people and learn new things about mood disorders in adults and children. If you’ve never been and live in the area, go now to the website to register and save yourself a spot. This is a FREE event, plus they serve you complimentary refreshments (bonus!).

Here are the details:

When:
Saturday June 28, 2014
from 8:30 am–2:30 pm

Where:
William R. Hewitt Teaching Center
370 Serra Mall
Stanford University
Stanford CA, 94305

Register: https://mded.eventbrite.com

Contact: Kathryn Goffin at kgoffin@stanford.edu

This event is free. However, they do ask that you register. Information about the event, including directions and a map, are on the registration website.

* * *

Here is a link to my review of last years event:

Unfortunately I’m disappointed to share that I won't be able to attend due to a prior commitment. But I still hope to post videos of the event once they become available online. If you yourself attend and want to do a guest post to share all that you learned, I would love that! Email me!

* * *

The Bipolar Disorders Clinic is part of the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine. We offer on-going clinical treatment, manage clinical trials and neuroimaging studies, lecture and teach seminar courses at Stanford University and train residents in the School of Medicine.

Clinic Chief Terence A. Ketter, M.D. is internationally known for his groundbreaking research on the neurobiology of mood disorders. More »

The Bipolar Disorders Clinic is also part of the Stanford Mood Disorders Clinic. Please see the Mood Disorders Clinic Brochure to learn about the clinic's vision and exceptional doctors and researchers, who specialize in the understanding and treatment mood disorders.


Friday, June 6, 2014

Boogie Men and Young Imaginations


Last year I wrote a post about my oldest son overcoming his fear of Slender Man. Today I was surprised to see several urgent emails in my mailbox from NBC Nightly News and the Today Show wanting to see if I would be willing to share my son’s experience about Slender Man on camera.

This comes after the arrest of two 12-year-old girls who allegedly stabbed their friend 19 times. Acccording to NBC news, the girls blamed their violent act on Slender Man.

I quickly declined the interviews, but asked my son about his feelings of Slender Man today.

First I should note, never did my son think Slender Man was real, instead, it was something that creeped him out until he bravely faced his fears in the woods one evening. For us, Slender Man was an opportunity for our son to face his fears head on and experience the peace that followed.

Today my son no longer fears Slender Man. He was actually surprised when he heard the news story saying,“Why would those girls want to kill someone for Slender Man? Slender Man is a character in a game that you run from—that doesn’t make sense!”

Gone is Slender Man from my boys’ imaginations, but we’ve faced other online mythical creatures since then. Such as “Jeff the Killer” a mythical creature who tells you to “go to sleep”, then once you do, the creature kills you. For about a month, this made sleeping a challenge for my youngest who then feared falling to sleep.

I’m not going to blame the internet for these experiences, though they’re scary and unfortunate, they’re nothing new to our society. When I was a kid, I was terrified of dolls that could kill you or poltergeists that came out of tv sets. As far as I’m concerned, there will always be boogie men and young imaginations. 

If you ask me, Slender Man did not cause this crime. I think it’s a waste of time to put all of our focus on Slender Man and shame the creators of this mythical creature.

Instead, we need to dig deeper and put our energy where it will make a difference. 

Let’s stop looking at the cartoon and look at the girls before us.



In case you missed my original post, here it is:

'Slender Man' Cited in Stabbing Is a Ghoul for the Internet Age

Friday, May 23, 2014

Discovery Health Psych Week: Must See TV




Link to Video Above:
http://www.discoveryfitandhealth.com/tv-shows/psych-week/videos/bodhi-faces-his-own-demons.htm

It’s mental health awareness month and Discovery Health is doing their annual Psych Week. Each day they will be uncovering different mental illnesses and show how people are coping with them. If you aren't able to view this programming on your tv, check out Discovery Health’s website for the many video clips available for previewing.

Here is their schedule:

Monday May 26th:
8 PM: Born Schizophrenic: Jani's Story
9 PM: Born Schizophrenic: Jani's Next Chapter
10 PM: Born Schizophrenic: Jani and Bodhi's Journey

Tuesday May 27th:
8 PM: The Woman with 15 Personalities
9 PM: The Town That Caught Tourette's
10 PM: 20/20 Mysterious Minds

Wednesday May 28th:
8 PM: This Is Autism
9 PM: I'm Pregnant And...OCD
9:30 PM: I'm Pregnant And...Bipolar
10 PM: 20/20 Mysterious Minds

Thursday May 29th:
8 PM: Hoarding Buried Alive
10 PM: 20/20 Mysterious Minds

Friday May 30th:
8 PM: My Strange Addiction
10 PM: Sleep Sex

Saturday May 31st:
8 PM: Born Schizophrenic: Bodhi's Story
9 PM: 20/20 Mysterious Minds

Sunday June 1st:
8 PM: Hoarding: Buried Alive—10 Biggest Hoards Marathon
10 PM: Hoarding: Buried Alive Season 5 PREMIERE


http://www.discoveryfitandhealth.com/tv-shows/psych-week

Saturday, May 10, 2014

You are Mighty Because You Mother!


A friend shared this powerful video with me, and I wanted to pass it on to you.

* * *

You are mighty, because you mother!

Wishing you all a day of peace. A moment to love and feel loved, even if the storm is over your home. Even when it doesn't feel like it, you are making a difference. Though the illness creates chaos, and the child throws daggers at your heart. Your love is felt. It is remembered. It is making a difference every day.

If not now, someday you will see this. I promise.

Stay strong my mamas, you are not alone. I am beside you, cheering you on.

Happy Mother’s Day to the moms who I have never seen, but feel everyday.

Thank you for being a part of my life.

* * *

Link to Video:
http://youtu.be/Xa-7jtvi7J4

YouTube Video Published: Apr 8, 2013
Download at http://JourneyBoxMedia.com/mighty
Based on a blog post by Lisa-Jo Baker you can get her new book, Surprised by Motherhood here http://amzn.to/1qYhMyi Described as "rocket fuel for weary mamas," this is the perfect Mother's Day gift. Read the first three chapters for free over herehttp://lisajobaker.com/surprised-by-m... She invites you to connect with her on Twitter at @lisajobaker. Great video for Mother's Day.
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