Tuesday, April 30, 2013

Getting My MRI

Today I had my MRI for my myoclonic body jerks. It wasn’t so bad being that I didn’t get claustrophobic. In case your child ever needs one, let me give you the highlights.

First I had to come wearing no metal, which was no big deal other than my wedding ring finger feeling naked. Next I laid on the MRI table and ear plugs were placed into my ears. After that, ear pillows were placed on both sides of my head. Then a plastic mask/hood was placed over my face, connecting to the bed I was on. I could still see through a small window on the mask that was about 3 inches big. Above me was a glass ceiling that looked like blue sky, it was a nice touch I might add. The nurse handed me a devise to squeeze in case of emergency and then I was told to close my eyes.

A moment later I was slid into the MRI machine and then the procedure began.

As the MRI started, I was surrounded by incredibly loud noises, some sounded like noises from a star wars video game and other noises sounded like construction noises or grinding machines. The noises were varied and inconsistent, sometimes moments of silence would occur just before more banging or grinding noises. The first half was 40 minutes long and the biggest challenges was trying to stay perfectly still. Thankfully I only had one body jerk and an itchy nose that was dying to be scratched. After the first 40 minutes were over, the nurse slid me out and injected a dye into my bloodstream for more imaging. Then back into the machine I went for another 15 minutes or so.

After it was over I left feeling like I had attended a loud concert. It was a fairly easy procedure, but if your child has sensory issues it may be too much noise and it may be too difficult to stay still for so long. This was the case with my oldest when he had his MRI in 2010. Read this old blog post to see how we handled that:

http://mysonhas2brains.blogspot.com/2010/09/getting-mri.html

Now comes the waiting... I expect to get good news on Thursday when I see my Neurologist, but I admit it’s a little creepy thinking they might find something. It’s hard not to think of loved ones I’ve lost who also had MRIs and soon after began the fight of their life. But overall, I have a good feeling that everything is going to be just fine. I’m not going to worry about it.


Sunday, April 28, 2013

Nevada Buses Hundreds of Mentally Ill Patients to Other Cities

Nevada buses hundreds of mentally ill patients to cities around the country. Yep, you read it right. In an investigative report done by the Sacramento Bee, it was uncovered that over the past 5 years Nevada’s primary psychiatric hospital has been putting hundreds of mentally ill patients on buses and sent them to cities across America.

According to the report, this practice became evident when one of it’s bused patients with schizophrenia turned up in a Sacramento homeless shelter confused and suicidal after a 15 hour trip without medication, arrangements or important information. It’s important to note that this patient had never visited this city and didn’t know anyone there. The report said that the patient was advised by the Nevada hospital to call 911 when he arrived to Sacramento.

This is appalling! It would be unacceptable for any hospital to dump their patients on other cities if they were cancer patients or heart failure patients. So why is it that because the brain is sick that these patients don’t receive the same dignified care? Had anyone thought about the risks involved for the patients let alone the general public? These are human beings. They’re someone’s child, brother, sister, parent. These people deserve so much better!

I’ve known for some time that our mental health system is broken, but this is just disturbing. Please read the entire report. The first step in making a positive change is knowing that we have a problem. 

People... we have a big problem...

* * *

Nevada buses hundreds of mentally ill patients to cities around countryBy Cynthia Hubert, Phillip Reese and Jim SandersPublished: Sunday, Apr. 14, 2013 - 12:00 am | Page 1A
Last Modified: Tuesday, Apr. 16, 2013 - 10:51 am


http://www.sacbee.com/2013/04/14/5340078/nevada-buses-hundreds-of-mentally.html

Thursday, April 25, 2013

Lightening Strikes Again

Yesterday my oldest son went into a small rage. It’s been a long time since he’s done this, I can’t even remember the last episode. It was triggered by the bullying he faced at school earlier that day. A boy shoved him against a wall saying, “You wanna mess with me?” after the same boy tried to steal his drink and money earlier in the week.

We addressed the bullying with the school principal and today the school is going to look into it, but the stress was too much for my son to handle and he unfortunately took it out on us. At one point he cried out, “I can’t help it, it’s all because of what happened at school.”

I believe him.

He’s been doing so good lately. Just the day before I was hugging him in the kitchen and was telling him how proud I was of him. He’s become so much better at handling stress and making wise choices. But yesterday’s episode reminded me that he still has an illness inside and he’ll be struggling with this his entire life.

During the rage I became physically aware of something. My son is a lot stronger than his younger years,  he’s almost 100 pounds (I’m 113) and now he’s as tall as me. This complicates things.

When he was younger I could pick him up during a rage, but that’s not possible now. As he got older we were advised to move him out of the house so he could cool off on his own, thus de-escalating the situation. This has worked like a charm, but now that he’s bigger, getting him outside has become extremely difficult. Yesterday it was almost impossible.

I’m concerned about this as he gets older. Soon we’ll have to remove the entire family and let him rage alone in our home. I have visions of my son locking us out for hours like he did last summer, or attacking the car if we try to drive away. None of this sounds good. Instead I hope that as he continues to mature, he’ll gain more self control and he’ll be able to deescalate without our enforcement. But yesterday reminded me that we’re not there yet.

After the rage was over my son fell asleep. The surge of chemicals ran their course and my son returned to me once again. It’s moments like these when I have to focus on all the progress we’ve made and know that the road ahead will still have some ups and downs. We’ve come a long way and one episode doesn’t take that away.


Sunday, April 21, 2013

My Retreat—My Restoration



This weekend I was privileged with the opportunity to go on a women’s retreat with my church—thanks to my father-in-law who helped make this happen and my dear husband who became Mr. Mom for the weekend.

As most moms feel, it’s hard to get away. I almost didn’t go because there are so many demands on me right now and a break from it all seemed impossible, but it was the best thing I could’ve ever done!

I spent the weekend in a quaint location with cabins around a small lake with 15 other moms who were each facing there own unique challenges. There’s something healing in hearing their stories, being encouraged by their victories and shedding tears for their sorrows. But one of my favorite experiences—to my complete surprise—was a mandatory 4 hour period of silence on Saturday morning. There was no talking, no electronics of any form, no musical instruments, just the sound of the wind across the lake and the small voice of God which repetitively told me, “Be still and know that I am God.” I was also reminded of God’s promise that no matter what happens in my life, He will never leave me nor forsake me. As I sat alone surrounded by nature, I felt a peace I’ve rarely ever experienced and as I returned back to the cabins to end our period of silence, I couldn’t help but smile. It really was that good.

Another highlight was how God seemed to put just the right people into my life. Within 30 minutes of arriving I met a kind woman who quickly shared her story of being a pastor’s wife. I shared with her how my 10 year old son has felt called to be a pastor and how he believes that God will use his challenges with his brothers to help others someday since he’ll know what it’s like to go through hard times. The woman then asked about his brothers’ challenges and I explained that my oldest had bipolar disorder and my youngest is being assessed for autism. In response, her face lit up and with a smile on her face she said, “I have bipolar disorder—and look at me, I turned out just fine!” She then expressed that she was an open book and would love to talk more.

I then met my roommate for the first time, a woman new to our church and after a few conversations I found out that she too was struggling with her children. I was able to share my story and encourage her that things do get better. At the end of the retreat she expressed with tears in her eyes that she felt God had blessed her in having us meet.

I love how God loves us. How he uses our pain, our struggles and our victories to help one another. I love knowing that God has placed people in my life to help me through the darkest times and how God is then able to use my story to do the same for others.

If you’re reading this now and you’re alone in your suffering, I encourage you to seek support. Even if you’re not connected to a religious group, you need to find a group to support you through this journey. It’s extremely common for families with children who have special needs to become isolated from every aspect of society just to survive the day. But that only takes you so far. Eventually you’ll burn out.  You can’t do this alone. You need to seek a shoulder to cry on and a listening ear. I promise you that you’ll find strength in others.

If you too have found support, please share with us where you found it and how it’s helped you. I hope we can encourage one another.

* * *

I removed the annoying word identification that’s required for those who want to leave a post, hoping to make it easier for you!


Thursday, April 18, 2013

A Positive Step Forward

Tuesday we had our first meeting for our youngest son’s Autism assessment with the new team. It was a huge success. The assisting staff member appreciated all the information we provided and stated that it looked like autism to her and was surprised it wasn’t caught sooner through the school. She was also surprised that my son was denied and IEP and wasn’t receiving more therapeutic services at school. At the end of the meeting she reassured me that once he had his diagnosis she would be able to assist me on how to get the services I needed to help my son the best. As she clarified, it’s the law that the school has to help. Regardless of what happens, it sure felt good to be supported!

After our meeting my husband and I picked the kids up from school together. As we pulled up to the middle school to pick up our oldest son we witnessed a girl laughing and throwing my son’s Pokemon cards into the air and all over the ground after she had taken them from his backpack. As my son scrambled to gather his precious cards in a panic (he explained that he had a few from his cousin worth more than $100), my husband and I jumped out of the car and went face-to-face with the girl. I stared her down as my husband (who is 6'3") had a few words and made her apologize to our son. Just seeing her terrified face was satisfaction to me. As we drove away we high-fived our team efforts, but left feeling bad that our son couldn’t stick up for himself.

Baby steps, right?

Overall it was a winner day. As I was getting ready for our appointment that morning I was overcome with feelings of gratitude, knowing that some families wait an entire year before this day comes and today we were given this incredible gift. I am so thankful. God is good.



Tuesday, April 16, 2013

Encouraging Words...

Like many of you, I feel such heaviness and despair for those suffering the unimaginable this week. It’s easy to feel like we’re surrounded by evil, but as I watched the images of people racing in, putting their own lives at risk to help others, I’m reminded that there’s far greater good in this world.

I know it may seem cliche to post the famous quote circling the internet this week, but honestly, I can’t read it enough:

“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’”
—Fred Rogers
* * *

Link to see how you can help the victims:
http://www.huffingtonpost.com/2013/04/15/help-boston-marathon-victims_n_3087183.html 

Link to video above:
http://www.youtube.com/watch?v=LZbXM3Kzd7o&feature=player_embedded


Sunday, April 14, 2013

Buried in Questionnaires

Right now I’m buried in pages of questionnaires for my little one’s assessments that begin on Tuesday. I have 5 packets in all! You might know the kind, where they ask hundreds of questions such as, What age could your child stand alone? or When was your child first interested in sounds? Forgive me, but I have no idea... these are tough questions so many years later. It’s kinda funny when I hit the obvious ones such as Does your child prefer to play alone? or Is your child sensitive to sounds? These questions make me feel like I’m acing the test, just don’t ask me his Apgar score, because that’s going to require some homework!

On Tuesday, our appointment will be 2 hours with just my husband and I. Next month we continue with several hours of testing with my son, then we get the results at the end of May.

Speaking of results, I got a call back from the first Neurologist who we’ve decided to leave mid-assessment and she has asked that we read the report that she’s going to prepare. She said that after talking to family, particularly Grandma, she’s now comfortable diagnosing him with Aspergers. She said that she really liked talking to Grandmothers since they tend to know what’s best for the child. I agree that my son’s Grandmother rocks, she’s pretty spectacular, but I was a little offended that the doctor didn’t value any of the information I brought to the table. Also, any diagnosis that begins with the word “I’m now comfortable”, doesn’t sound very clinical.    

Either way, I look forward to starting over again this week with a new team. Maybe I should bring Grandma with us, she does rock you know!


Thursday, April 11, 2013

Does Your Kid Do This?



Recently our little one has been leaving a trail of Nerf crumbs around the house. This is due to his new behavior of picking small pieces off of his Nerf DS case. He said that he can’t help it and he tried to stop but his body won’t let him. He explained, “My mind can’t get off of it!”

He also reminded me that this is the same thing that he does to all erasers, good luck find one on any of his pencils because he picked them all off. I also noticed that he does the same to his fingernails and on a few occasions when he’s sitting close to me he’ll try to do the same thing to my fingernails.

Does your child do this or something similar?

Poor Nerf case, it doesn’t stand a chance...


Tuesday, April 9, 2013

Pastor Rick Warren’s Tragedy Hits Close to Home

In a letter published on CNN’s website, Pastor Rick Warren shared the news of his youngest son’s suicide this past week. His son, Matthew Warren died from an apparent self-inflicted gunshot wound at the age of 27 after fighting a lifelong battle with mental illness. Rick Warren writes:
“But only those closest knew that he struggled from birth with mental illness, dark holes of depression, and even suicidal thoughts. In spite of America’s best doctors, meds, counselors, and prayers for healing, the torture of mental illness never subsided.”
This is a heartbreaking tragedy. But for me, it’s also a reminder of the war we’re all up against.

Like Matthew, our children are facing a mental illness brought on during childhood, we too have good doctors, meds, therapists and prayers, yet I know deep down that our children’s lives are at stake and no matter how much is done, no matter how hard our children fight, this illness is a monster wanting to take their lives.

This rattles my heart for my family and for yours.

I think about you often. I think about your children and the stories you’ve shared with me through email. I know many of you are hanging on by a thread, some of you single parents, others with multiple special need children. Some of you have no insurance, while others have no support. Some of you have yet to expereince a day of relief, while others try to find sleep at night while their children sleep in a hospital bed miles away. Many of you are battling an illness with no name and others have a list of labels that keep changing. And we all worry about suicide at one time or another.

I’m thinking of you tonight and I’m praying for you. I pray that your child and your family will be spared the reality that Pastor Rick Warren’s family face tonight. I pray that our children will not only survive this illness, but will grow up to have joyful, fulfilling lives.

May God bless your children and your families and may God be close to Matthew’s family tonight.

* * *

Reference: Son of Pastor Rick Warren commits suicide, family says.
http://www.cnn.com/2013/04/06/us/california-warren-suicide/?hpt=hp_inthenews By Dana Ford, CNN updated 12:46 PM EDT, Sun April 7, 2013
Referenced April, 9th, 2013

Monday, April 8, 2013

Praise God—A Miracle Happened!

I’m so excited to share with you the amazing miracle God did in our life regarding our dilemma with our son’s autism spectrum disorder assessment.

After a week of calling my medical group to report the incident, I finally got in touch with a head nurse. I explained to her the disappointing situation with our current neuropsychologist. For clarification, the neuropsychogist does not work for my son’s medical group, instead she has her own private clinic. The reason we saw her for the assessment was because our insurance company puts “autism” under behavior health and not under medical, so we were not allowed to have the assessment done with the medical group.

As I explained to the head nurse that I wanted to look into appealing my insurance company to see someone out of my network because I had a bad experience with the current neuropsuchologist, she seemed to listen intently, then she said, “Let me look into this—I’ll get back to you.”

After a week of unreturned calls, I was prepared for another dead end, but later that day the nurse called me back. She said, “I contacted the appeal department and I have some bad news and good news. The bad news is that it would be a very long process to make an appeal to the insurance company and the results would most likely be disappointing. However, the good news is that I spoke at length with our top doctor who does our assessments here at the medical group and he has decided to do your son’s assessment.”

Oh my gosh... I know exactly who this doctor is! He comes highly recommended and his waiting list is over a year long!

As the excitement sunk in, the nurse continued, “We called your insurance company and they told us that they would NOT cover the costs for the assessment since this doctor is out of your network. However, we wanted to do the right thing here so we’re offering to do your son’s assessment at no cost. We promise he will get a fair and complete assessment.”

HOLY COW!!!!!!

Through giggles, I asked the nurse, “So you’re telling me that you’re not billing the insurance company and you’re not billing me? So you’re doing this for free?” She replied, “We want to give you the best care you deserve.” Then she continued, “this doctor typically has a waiting list of about 1 year, but the doctor has agreed to get your son in as soon as possible. Let me transfer you to the appointment department.” After a few seconds a woman picked up the line and schedule all three required appointments for my son’s assessment with the first appointment in just over 1 week and the last one at the end of next month!

As I got off the phone I began laughing and crying all at the same time. The boys called out, “What’s wrong mommy, are you upset?” I laughed more and said, “No boys, these are tears of joy!”

I could hardly believe this unexpected turn of events. But what makes it more spectacular is that for the last two weeks I’ve been praying specifically that God would “fix” this situation. This was following a devotion where I was encouraged to once again “let go” of things and give them to God, so in an effort to do this, I gave this over to God and prayed that He would somehow get us approved to see someone out of our network, knowing full well that this was very unlikely. And just as God promises, He gave me more than I ever imagined. Not only did he give me someone highly recommended, but he gave it to me for free AND he gave it to me immediately.

I wish I could say that I had complete faith that this was going to be the outcome. But honestly, I struggled with this whole “give it to God” prayer. It was a rough two weeks that were filled with a lot of raw emotion. But thankfully God doesn’t need my help, He just needs me to have a mustard seed of faith and he can move mountains. Boy did he move some mountains!


...Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, “Move from here to there,” and it will move. Nothing will be impossible for you. (Matthew 17:20)

Thursday, April 4, 2013

Trying to Figure it All Out

Things are messy right now.

I still don’t know what we’re going to do about our youngest son’s assessment. I’ve placed numerous calls into the office of my son’s Neurologist who told us to get the assessment with the Neuropsychologist. I’m hoping he can request authorization with our insurance company to allow us to see someone outside our network who’s highly recommended in our area. I’ve also consulted several professionals in this field who all agreed that our experience was very unusual and that we should seek an assessment elsewhere.

In the meantime, I got a call from our current Neuropsychologist who may have heard from my Neurologist that I was unhappy. She asked if there was a problem and I outlined everything, expressing my concerns and disappointment. I also explained to her that parents in our area are not eager for our kids to be diagnosed with autism, but instead we’re eager for answers so that we know how to help our children. She proceeded to apologize profusely, even admitting that after talking to a family member of mine that she had a better understanding of what my son’s symptoms were and that she could see that I was an extraordinary parent who only wanted to help her child. I could tell she was sincere in that she never wanted to upset us, but I expressed that I had an issue with trust regarding her assessment based on her views expressed in our last meeting. At the end of the call, she asked if we could take a break and talk again next week to see how I felt then. I agreed, because until I know what’s available through my insurance company, I may need to keep lines of communication open with her. But even then, I don’t know if I could ever trust her assessment because I would always question if her final decision was made in an effort to resolve our conflict or if it was a true assessment.

It just feels like one more issue I have to face and I’m not looking forward to it.

I’m so exhausted.

And yes, I still have body jerks almost everyday. My doctor is moving forward with an MRI at the end of the month.

exhale... body jerk... inhale... and so life goes.


Tuesday, April 2, 2013

Is This a Doctor I Should Run From?

Our youngest son began his assessments last week with a Neuropsychologist. I’m sad to share that the experience was a major disappointment.

After about 1.5 hours of testing, the doctor told me that my son was too tired to continue and that we would continue again at the next appointment. Then she proceeded to tell me the following:

“I think your son has depression and ADD.”

I said, “Ok, but what about the Asperger traits he shows, how do they fit into this diagnosis?”

She said, “Let me tell you something, Aspergers is a bull shit diagnosis!”
(She was referring to Aspergers in general, not pertaining to my son specifically.)

I responded with, “Yes, I know that Aspergers Disorder will be removed from the DSM in May, but the symptoms are being moved under the Autism Spectrum Category.”

She repeated, “No—Aspergers Disorder is a bull shit diagnosis, it never existed and that’s why it’s leaving the manual!”

Note: According to many News sources, symptoms of Aspergers are suppose to be put under the umbrella of Autism Spectrum Disorder in the DSM 5 in May 2013. Here is what CBS News reported:
The familiar “Asperger’s,” along with some similar disorders, will be lumped together under autism spectrum disorder, “to help more accurately and consistently diagnose children with autism,” the APA said in a statement.
So I asked the doctor, “If Aspergers never existed, what do people with Apergers Disorder have? ADD or high functioning autism?

She didn’t respond. So I asked, “What does Temple Grandin have then?”

She paused, appearing stumped and said, “She’s a rare case.”

She then explained that there is no way that my son has autism since she connected with him and he gave her eye contact.

I pointed out that his eye contact is inconsistent and that I have friends of the family that he never looks at when speaking and instead looks to the side of them.

She said that she can tell an autistic child when they come into her office because there is nothing to them. They are a dead end, they can not be helped. They will grow up to face suicide and prison. She then explained that it would be better to have bipolar disorder since with that illness at least you have medication.

At about that time my jaw was on the floor. Did she really say that?

I said, “It’s my understanding that the autism spectrum is very wide and that you can have children that can’t speak on one end and others that are brilliant professors on the other end, for example like Temple Grandin.”

She then said that once kids are diagnosed with Aspergers their parents give up on them and the kids have no future.

Then the doctor went into a rant about the parents in my area who are eager to have their children diagnosed with Autism. “You think it’s premier to have your child diagnosed with autism. Where I’m from it’s a devastation and you should be pissed off if your child was thought to be autistic.”

I explained that in no way was I eager to have my child diagnosed with autism, I just wanted her to look at all the facts and figure out how we could help my son.

I then asked about some of his traits, such as his obsession with one computer game, his long monologs about it, not allowing back and forth conversations, his desire to not play with other kids, his necessity for a rigid schedule with everything occurring at the same time and his preference to eat the same food everyday, along with his sensory issues and OCD traits. I asked, “What are these symptoms of if not Aspergers?” She said, “ADD”.

Then she asked if there were traits when he was little, I said yes. (Even though it was already outlined for her in my provided notes) I explained that he was content to play for hours by himself and that family members recalled it being highly unusual that he wouldn’t play with all the other kids when he was little.

She said looking confused, “Ohh, that does sound like autism.”

Then she appeared to cry and said, “I just felt a connection with your son and I don’t want to diagnose him with autism because it will ruin his life, the label will follow him everywhere.”

Confused I asked, “So you don’t want to diagnose my son with autism because you like him and don’t want to hurt him?”

At this point I felt like the ground was falling underneath me. Wasn’t she the doctor? Wasn’t it her job to remove her emotions and look at the facts and make an assessment based on her education and her experience, not based on the fact that she liked my son?

The conversation continued after this with her appearing to cry several times and then saying that she needed more time to make the assessment. At one point she just looked confused by it all.

I told her to take as much time as she needed and that I would provide her with anything she needed to make the assessment.

Then she leaned over and handed me a post it with her name on it and said, “Now if anyone asks you I want you to tell them that I told you that your son was severely gifted and that’s all.”

I left confused, appalled and extremely disappointed. At this point, how can I trust her assessment?

Her emotions, he preconceived notions about parents in my area, her views on children with autism being a lost cause and her belief that “aspergers kids” don’t exist doesn’t seem like a sound place to evaluate my son.

In the end, I can accept a diagnosis of depression with ADD, but with all that I just experienced, I don’t know if I can accept it from her.

I left with one thought... is this woman a genius and sees what no one else sees, or is she inadequate and I should run the other way?