Thursday, September 25, 2014

Our First Suspension

Our youngest son received his first suspension this week. It wasn’t a surprise since he’s had 3 days in a row of escalating behavior at school, spending at least half the day in the office each day. On one occasion, I was told to pick him up early since he was already in the office three times.

His suspension was a result of his explosive behavior in the classroom. He got frustrated over his math work, combine that with his embarrassment over the class laughing at a word problem that he thought was making fun of him. “He instantly went from 0-60!”, said the teacher, as he described him ripping up his assignment, throwing his books, shoving his desk across the room and hitting two kids after being removed from the class.

It was noticeable that these tough days at school where taking its toll. Everyday after school he would make himself feel better by taking two long baths. It was pretty effective, he would come out completely refreshed and ready to take on his homework.

In order to avoid rewarding him with a home suspension, which is what he would prefer, he served his suspension in the office all day.

It was interesting to see that after his day long suspension, he was great. As the principal reported, “He did fabulously today. He completed all of the work he was given before the end of the school day.” My son shared that he loved the office since it was nice and quiet. It’s obvious to me that the classroom is overwhelming him, leading him to these outbursts. Once we removed the sensory minefield, he did great and he didn’t take a single bath when we got home.

This school challenge is new territory for me. It’s pretty much the opposite of my oldest son who kept it together all day at school, then exploded at home. With my youngest, the worst is happening at school.

Homeschooling is definitely worth exploring.

As for good news, I’m pleased to share that a state agency for autism in my area has reviewed my son’s case and has decided to accept him into their clinic to conduct a second opinion assessment for Autism Spectrum Disorder (ASD).

I’m so thankful to hear this news, especially since they told me that they don’t typically do second assessments with the exception of rare cases. They also said that they’ll be reviewing every documented I provide and will be including it into their assessment. Which is such a relief since our first medical team didn’t review any of this information that documents first hand accounts from family, relatives, teachers etc. As well as the list of behaviors and symptoms we’ve seen over the years. I feel like this is our only hope at this point.

I still realize that my son may be too high functioning to make it on the spectrum, but I’m hoping that the end result will be help, regardless of the diagnosis.

Along with my thankfulness comes anger.

Last night I was feeling a lot of anger over this whole process. When my husband and I reviewed the current DSM for ASD, it seemed to fit my son in every category. He’s definitely mild on the spectrum compared to others, but it’s having a major impact on his life. The principal has already explained how the kids are scared of my son. He’s socially isolated and he’s scaring the kids with his outbursts. The principal explained that if he had a diagnosis, he could teach the other kids about it and help them understand.

Another reason why labels matter.

I’m disappointed that the first doctor that performed the assessment didn’t take into account his history of behaviors. I later learned that this is part of the new DSM, doctors are suppose to use any past behaviors as qualifying behaviors for a diagnosis. Unfortunately in our case, the doctor used only what he saw at the time of the evaluation.

It makes me feel like we’ve wasted a year.

And my boy is now suffering because of it.



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.

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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