Sunday, March 31, 2013

Cutting Away Negative Self Image

The weekend my oldest son decided to cut his long hair off. He’s been sportin’ a shoulder length shaggy hairstyle for sometime now and held onto it because, “I can hide under it”. Well to our complete surprise, my oldest decided to request clippers at his last haircut. Anxiously I waited for his response as his long locks fell to the floor, but to my relief he only seemed momentarily shocked, but continued on with the cut.

Emerging under all that hair we saw a handsome young man who looks a few years older and has a smiling beaming ear-to-ear. As he puts it, “I feel so much happier now with this haircut!”

I have to admit I shed a few tears of joy as I saw his face in a way I haven’t in years. I was also so proud of his bravery to just “Go for it!”—something we rarely see since his anxieties keep this kind of action at bay.

Now, I pray that he gets a positive response at school, because we all know that what your peers think matter most. In the meantime, I’m embracing this new hairstyle and hoping that along with the long hair left behind, he left his negative self-image on the floor. Don’t we wish it could be that simple?


Thursday, March 28, 2013

Stress—It Does a Body Bad!

Good news! I got a call from the Neurologist office and they told me that the convulsions I was experiencing during my EEG were not caused by epileptic seizures. Unfortunately she couldn’t say much more since I’d have to wait until my doctor gets back in to discuss it further. But based on what we originally talked about at my first visit—and a little google searching—it looks like nonepileptic seizures can be caused by a lot of stress. According to epilepsy.com, nonepileptic seizures are caused by:
A specific traumatic event, such as physical or sexual abuse, incest, divorce, death of a loved one, or other great loss or sudden change...  they are a physical manifestation of a psychological disturbance...
...when a person experiences trauma such as physical abuse, sexual abuse, witness to violence, his/her body can absorb this trauma. Therefore, a seizure is the body’s way of expressing what the mind and mouth can not.
or as the Epilepsy Foundation simply puts it:

Nonepileptic seizures are one way that the body indicates excessive stress.

Hmmm... I wonder what possibly could’ve caused such traumatic, excessive stress in my life (said in a sarcastic tone). Maybe I should just refer my doctor to my blog so she could read for herself!

Another reason for nonepileptic seizures are sudden changes in brain function, such as a metabolic disturbance. Listed also was hypoglycemia, hypoatremia, cardiac arrhythmia, brain lesions, syncopal episodes, migraines and transient ischemic attacks; the National Institutes of Neurological Disorders and Stroke adds that narcolepsy and Tourette syndrome are other possible causes of nonepileptic seizures.
I imagine that when I see my Neurologist I’ll be referred to a therapist. I doubt that I’ll still have the MRI since my blood work looks fine, but I’ll have to wait and see. In the meantime, I’m just happy to hear that I’m not losing my drivers license. Or maybe my husband is happier since he won’t have to become a taxi driver for our boys. Praise God for small blessings!


Tuesday, March 26, 2013

Getting My EEG

Today I had my EEG. It was a lot more eventful than I imagined.

First I was told to stay up later than normal and get up earlier to make my body more prone to activity. Once there I was hooked up to the wires, which was a little weird since they have to scrub the skin cells in each area before adding the glue and wire. As the technician was going through my hair to scrub individual areas, I commented that it felt like he was looking for lice, thankfully he confirmed that I was lice free.

Next, I was told to relax and the lights went out and the testing began. At first I felt a few small body jerks, which made me feel relieved because I had worried that my test would be inconclusive if my body never jerked. But from there, things became a lot more active.

I was next told to start breathing in and out through my mouth rapidly for 3 minutes to make my brain waves change, kinda like hyperventilating. Toward the end of the 3 minutes it got harder to breath and I started to feel hot all over and then my body started to shake, I was having full on convulsions. These body shakes came and went constantly, with duration and intensity much longer than anything I ever experienced at home. I remember thinking... I can’t believe this is happening.

Next, they added strobe lights to flicker overhead as I rested with my eyes shut. Instantly I was shaking uncontrollably. My body seemed to take a life of its own and I remember the technicians asking if I was ok, then in an enthusiastic tone, they said, “we’re getting all of this on the video camera too”.

As the testing continued they stopped the strobe lights for a period in which I could relax and maybe fall asleep while they recorded my brain activity, however sleep was impossible because my body continued to shake with countless series of convulsions.

As the test ended the lights came on and they started to remove the wires from my head, but like an old engine turned off that continues to sputter, my body keep convulsing, until they finally came to a stop.

As I left the hospital I felt weak and dazed, even a little nauseous. I tried to call my Dad but couldn’t think of his number, my brain was definitely in a fog and it felt like my organs were still shaking a little inside. Surprised by this reaction, I had to call my husband to pick my up since I knew there was no way I could drive home. On the way home I sobbed. Not sure why, other than I was a complete mess.

Tonight I’m doing pretty good, just very worn out and feeling like my body and brain has taken a beating.

Now I wait to get the results. Hmmm... I wonder what they’ll say?


Monday, March 25, 2013

My Turn to See a Neurologist

I mentioned in last Friday’s post that my youngest son is seeing a Neuropsychologist today, but what I didn’t share was that I myself saw a Neurologist last week for the first time.

I have this strange thing happening to me lately and it’s gotten progressively worse. I’m having body jerks that send a jolt through my body causing my muscles to contract violently, sometimes just once or other times up to 20 times an hour. I decided long ago that they were nothing to be concerned about when my doctor told me they were normal for some people when they felt tired and drifting off to sleep. But over the years, the body jerks have become more pronounced. In just the last few months they have taken a life of their own and now happen when I’m walking around doing things at all hours of the day. Yes I’m tired all the time, but the body jerks are so strong that they can make me jump off the floor.

Over time I concluded my body was in protest after being rundown after years of stress. But a few weeks ago, the body jerks became relentless and by the end of the evening they were affecting my speech—enough to scare the crap out of me. So, I contacted my new doctor who upon hearing my symptoms immediately sent me to a Neurologist, explaining, “No, these are not normal!”

Last week I saw the Neurologist who agreed this wasn’t normal behavior and called these body jerks possible Myoclonic seizures. She said they sounded like a form of Myoclonic epilepsy and ordered an EEG to screen for it. She also ordered a ton of blood work and an MRI, just to rule out the rare possibility of a tumor. Something neither of us are worried about.

As she was ordering all these tests I told her how I read about these seizures and even though they can be caused by epilepsy and some horrible diseases, they can also be caused by stress. A psychological response to stress. I told her that if she knew half of what we’d been through in the last five years she’d see how this would be a perfect explanation for these seizures. My doctor grinned and said, “Yes, that’s a possibility, but I’m not there yet, we have a lot to rule out before we settle on stress as the root of this.”

In the meantime, my boys chuckle whenever my body jolts and say, “Look, Mom is tired again!” It’s turned into somewhat of a joke, but lately, I’m not laughing anymore.

Wouldn’t it be ironic if I was diagnosed with epilepsy and had to go on an anti-convulsant drug like my son? Life can be funny like that sometimes...


Thursday, March 21, 2013

Let the Assessments Begin!

On Monday my youngest son will begin his assessment with a Neuropsychologist for his suspected autism spectrum disorder. This is a first for us, being that my oldest never went through this kind of evaluation. I don’t know too much about it other than the appointment will be 2.5–3 hours long, if my little one can tolerate it. From there, hopefully she’ll have collected enough information to go to stage two which may include a large group interview where we’re told to invite outside family members such as brothers, aunts, uncles, grandparents, and even teachers and therapists all to answers questions about my son. She said that this is a unique service she offers that allows her to get a big picture of what’s going on and helps her form an accurate assessment.

I find this whole process interesting. I also think that every kid deserves such an assessment and wonder why these services have only been available to my youngest who has autistic features and not my oldest who has a mood disorder. I find it terribly disturbing that my youngest has had more testing and assessments done in his first few months of evaluation than my oldest has done in his 5 years of treatment. Something is wrong with that. But that’s a rant for another day and I’m honestly too tired for fighting words.

Instead, I’m hopeful. I hope the Neuropsychologist sees what we’ve all been seeing in my youngest. I hope that we have clarification and not uncertainty. I hope we leave with a report that will give me the tools to help my little one embrace his gifts and overcome his challenges. I’m hopeful for his bright future.





Tuesday, March 19, 2013

The Power of Friends

Lately my oldest son has formed a connection with a group of boys at his school. As he explained it, we’re the “nerd lunch bunch” and “they all have issues like me.” He doesn’t specifically know what the kids are dealing with—only that one has Aspergers—but he knows that they all have IEPs and like to play card games with him.

This group met in the beginning of the school year, but lately their bond has grown and now my son looks forward to spending lunch with them everyday. As he explained, “Since we all have stuff wrong with us we don’t tease each other, and when we get teased by outsiders it doesn’t bother me as much since we’re all together.”

I’ve also heard him share, “Lately one of my friends has been acting out a lot, but that’s ok, it’s probably because they’re adjusting his meds. We just try to help him act right at school.” He’s also shared how the group looks up to him to organize the lunch games and make decisions for the group, he explained, “It’s like I’m the leader or something!”

What I’ve also noticed is his chipper mood lately, he seems really happy lately and he’s bringing that joyful energy home after school.

But what I find the most significant is the statement he made this morning before going to class. He said, “I feel so much better about myself now that I have these friends!”

Wow, the power of friendships... incredible!


Sunday, March 17, 2013

Missing the Small Things

I have to admit that we’re struggling with going to church lately. Our boys fuss so much during the service that we find ourselves managing their behavior and not focusing on the sermon. It’s exhausting to say the least.

Overtime we’ve found it harder to get us ready in the morning and instead have opted to stay home because it’s easier and we’re just too tired at the end of the week to fight over one more thing with the boys.

So now our attendance has become sporadic over the last few months and I find it affecting my spirituality. I don’t feel as connected and find that I’m not focused on God enough during the week. This is something I definitely want to change, but I haven’t figured out how to help my kids enjoy a large room of people with loud noises and long periods of sitting still. The easy solution would be to have them join the children’s programs, but they don’t want to be there either because it’s a small room with lots of kids and again, noise.

Sometimes it’s the small challenges that wear on you over time.

I miss my church.



Thursday, March 14, 2013

Beautiful Minds Lecture Series


For those in the Atlanta area, you might be interested in the following event:

BEAUTIFUL MINDS LECTURE SERIES:
The Impact of Bipolar Disorder on Loved Ones

DATE:
Wednesday, April 3, 2013 at 6:30 PM

LOCATION: Emory University - Briarcliff Campus
1256 Briarcliff Rd, Building A
3rd Floor Auditorium
Atlanta, GA 30306


LECTURE SERIES #3: A panel of experts will take questions from the audience about living with a loved one who has bipolar disorder. The panel includes: Jeffrey Rakofsky MD (Psychiatrist and Bipolar Expert), Nadine Kaslow PhD (Psychologist and President-Elect of the American Psychological Association) and Yvonne DeBellotte (parent of a child with bipolar disorder).

Come with questions you would like answered about the challenges you have encountered as a caregiver. These may include:
Coping with anger, frustration, grief, exhaustion
Feeling unsupported by the mental health system
Believing your loved one will never get better
Blaming yourself
Wishing your loved one would take their medicine
Wanting to hide the diagnosis from others
Having financial difficulties
Lacking effective coping skills

This seminar will offer the caregiver an opportunity to discuss feelings and pose questions to a diverse panel that may be able to offer insights and suggest available resources. The panel discussion will be followed by a performance from an individual with bipolar disorder.

We look forward to seeing you there.

SPONSORED BY:

The Emory University Mood and Anxiety Disorders Program and The Sean Costello Memorial Fund for Bipolar Research


Sunday, March 10, 2013

“Let Me Tell You About My Mods...”

My youngest son has been showing a very typical trait of Aspergers Disorder lately, he has been talking nonstop about Mindcraft Mods, especially when we’re in the car and the actual game of Mindcraft is out of his reach. Yes, Mindcraft seems to be his obsession lately.

What’s interesting to me about his marathon lectures about Mindcraft Mods (Mods according to my son are modifications to the game that he invents) is that he doesn’t really want to have a conversation about them, instead he prefers to just talk at me, most of the time it sounds like he’s giving me instruction on how one would play the modification in the game. I tend to nod my head a lot and give feedback such as “nice” or “hmm”, but most of the time I can’t seem to figure out what he’s talking about. I guess you have to play the game to understand.

Something I’ve noticed that’s a characteristic of Aspergers is that my son does not like to be interrupted during these long monologs and finds any unrelated questions to be a major irritant and just a waste of his time, so I try my best to listen. His brothers on the other hand have had enough of the “Mod talk”, as they beg me, “Mom, please make him stop talking about mods—I can’t take it anymore!”

I have to admit, I find the whole thing kinda cute, maybe because he seems true himself during these moments, plus he always ends his speeches with, “Tomorrow I’ll tell you more about my latest Mod, ok Mommy?”

Ok, kiddo!


Thursday, March 7, 2013

Latest Research—Illnesses Connected Genetically?

One of my followers shared this New York Times news story with me this week. In the largest genetic study for psychiatric disorders, researchers discovered 5 disorders that share genetic risk factors. They include,schizophrenia, bipolar disorder, autism, ADHD and major depression, all which share common genetic factors that point to a specific signaling system. This is an exciting study that takes us one step closer to better treatment. And for families like mine who have children with different disorders in the list above, this study helps bring understanding for what we’re experiencing firsthand in our homes.
http://www.nytimes.com/2013/03/01/health/study-finds-genetic-risk-factors-shared-by-5-psychiatric-disorders.html?_r=0

The New York Times
By GINA KOLATA
Published: February 28, 2013

Consulted: March 7, 2013

Tuesday, March 5, 2013

A Prescription for Bullying


Today our psychiatrist wrote out a prescription for my oldest son on how to deal with bullying. He pointed out that kids are taught to ignore bullying, but they are never taught what to actually do. Here is what he told my son to do the next time he faced a bully:

1. Change the subject
For example, a kid says, “Your shoes are dorky”. You respond with, “The superbowl was so fun to watch, did anyone else see it.”

2. Say something funny
Many comedians have learned to take the attention that is placed on them and turn it into an audience by being silly and making people laugh. Though don’t make fun of the bully.

3. Agree
For example, A kid says, “Your shoes are dorky”. You respond with, “If that’s what you think.”

4. React only a little
Say, “that hurt my feelings.” But remember that you need to keep emotions small so that you don’t reward the bully with explosive reactions.

5. Leave
Just walk away.

By taking one of these actions, a bully is not rewarded by getting you upset and in the end, they lose interest in bullying you. As our psychiatrist pointed out, these are great tools that you can use for the rest of your life.

* * *

According to our psychiatrist, this prescription was inspired by the following book:
Simon’s Hook; A Story About Teases and Put-downs [Paperback]




Sunday, March 3, 2013

Temple Grandin—An Inspiration

I just finished watching the movie Temple Grandin for the first time, I know most of the world has, but if you’re like me and haven’t yet, you’ve got to see this!

I could write an essay about this movie, but I will spare you. I just wanted to share how much this movie gave me a relatable perspective of what my boys go through regarding their sensory issues. It helped me understand what my boys experience and why they react so extreme to what seem to be minor things in life. The scene where Temple struggles going through automatic sliding doors looked just liked the season where I couldn’t get my youngest to go into a Target during Halloween or how he would go into full blown panic mode if he saw an unfamiliar dog walking on his path. As Temple explained, these things “hurt”.

I was also fascinated with her squeeze machine and how she used it to calm herself down, I’ve witnessed this first hand with my boys, we like to call it “heavy hugs”.

I cheered when Temple’s mother opposed the medical community’s advice of having her child committed and instead gave her daughter an opportunity to find her way in the world. As her mother said, she’s “different not less”. This inspired me to continue to fight for my boys and trust my mother bear instincts.

But nothing inspired me more than seeing Temple overcome so many impossible barriers and through her undying persistence, give the world an incredible gift through her brilliance.

This is a must see! I warn you though, you may shed a few tears...

Link to Video:
http://youtu.be/cpkN0JdXRpM

YouTube Video by:
risonrg