Thursday, May 30, 2013

A Final Diagnosis

I have a final diagnosis.

My youngest son was diagnosed with an Anxiety Disorder.

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

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

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

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

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

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

When I asked him about how he has no filter and will tell teachers they are boring or other parents that he doesn’t like their kids, how he doesn’t easily engage in back and forth conversation, or how he walks the playground talking to himself instead of playing with other kids, the doctor admitted that our son has odd behaviors that can affect him socially and that as he grows these may become more apparent. He said that we may need to assess him again in 2 years to see if he has learning deficiencies in social skills. He referred to the newly created Social Communications Disorder, which according to John Elder Robison of Psychology Today:
Social Communication Disorder is described (in my opinion) as a sort of “autism lite,” where the person has some features of autism but not enough to meet the diagnostic standard under the new definition.
Robison points out the concern many critics have about this new label:
Here in America, it’s time to open a discussion about Social Communication Disorder and where it belongs. If it’s part of the autism spectrum or “autism lite” we need to make a decision about what services will support people with the new diagnosis. Otherwise we risk doing that population a great disservice – giving them a diagnosis that leaves them nowhere, with no indicated services or therapy.
So basically, this is just another label, but at this time it doesn’t offer much support.

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

He then recommended a book called, Helping the Child Who Doesn’t Fit in. Here’s how the book is described:
Remember the kids who just didn’t fit in? Maybe they stood too close, or talked too loud. Whatever the reason, we called them hurtful names, and they never understood why. Now, clinical psychologists Duke and Nowicki call these children “dyssemic,” and offer some ideas of how to help them.
Dyssemic children cannot readily comprehend nonverbal messages, much as dyslexics do not correctly process the written word. Yet nonverbal communication plays a vital role in our communication with others, and children who misunderstand or misuse it may face painful social rejection. In HELPING THE CHILD WHO DOESN'T FIT IN, Duke and Nowicki show parents and teachers how to assess the extent of a child’s problem, as well as how to help the dyssemic child.
Our doctor also mentioned that the medication our son was currently taking, Prozac, is a mood stabilizer (this was news to me) and that even though he wasn’t diagnosing him with a mood disorder, it would be helpful if he ever developed one as he got older.

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

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

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

So what do I think of all this?

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

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

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

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

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

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

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


Tuesday, May 28, 2013

Nervous for the Big Day

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

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

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

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


Sunday, May 26, 2013

Experiencing Pure Bliss

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

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

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

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

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

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

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

It was pure, beautiful bliss...



Thursday, May 23, 2013

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

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

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

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

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

In salon.com, Temple Grandin proclaims that the DSM-5 sounds like diagnosis by committee. She concludes:
Twenty years from now, I think we’re going to look back on a lot of this diagnostic stuff and say, “That was garbage.” So as I see it, we have a choice. We can wait twenty years and several more editions of the DSM before we start to clean up this mess. Or we can take advantage of the technological resources that are beginning to become available and start phase three right now.
 I choose phase three.
And the critics go on and on...

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

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

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

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

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

God help us all.


* * *

The NIMH Withdraws Support for DSM-5

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

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

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

Sunday, May 19, 2013

I’m So Proud!

On Friday my oldest son shared with me that he’s the “social brain” for his autistic friends at school. He explained that a lot of kids try to take advantage of these boys so he likes to protect them. He shared how at the book fair another boy manipulated his friend who has Aspergers to spend all of his book fair money on himself. Sure enough, the boy spent over $20 on a book for this kid, leaving no money for his own book. My son stepped in and worked with the school to get his friend’s money back so that he could get the book he intended to buy that day. He also shared how his friends easily get hyper-focused on their card games such as Pokemon, and as a result, they get their cards taken away by the teachers leaving them cardless for the lunch time tournaments. So my son explained how he likes to collect the game cards from these boys before class time so they don’t get tempted to take them out and risk losing them.

I can’t tell you how proud this has made me. To see him looking out for others, and helping them with their own struggles is so encouraging as a parent. Through the years we’ve experienced so many challenges and at times you wonder if your kids are learning all the good stuff you’re trying to teach them. This moment was a beautiful reminder that even though we don’t always see it, our kids are getting it! I am so proud of him.

Thursday, May 16, 2013

8 Survival Tips from a Mother in the Trenches.

Great Schools has asked my friend Dorothy O’Donnell to share a few tips/resources that may help other parents raising a child with a psychiatric and/or learning disorder. In the article she shares 8 essential survival tips—all of which I support. Please take the time to read it, especially if you’re just starting your journey, it could save you a lot of hardship in the future and help lead you down a path of success.

Raising a child with mental illness: What I wish I’d known
8 great survival tips from a mother in the trenches.

http://www.greatschools.org/parenting-dilemmas/7309-childhood-mental-disorders-parenting-tips.gs



Tuesday, May 14, 2013

Bipolar and the Flu Connected?

This past week I read multiple news stories about the latest study by the  Journal of the American Medical Association Psychiatry that has linked the flu in pregnant mother’s to an increased risk for bipolar disorder in their children. What was interesting was that the study indicated that the third trimester was the most dangerous time, a time when most women begin to relax being that the baby has already developed so much. In my case this study doesn’t apply since I didn’t have the flu and we have a genetic predisposition to mental illness, but for some of you, this may be something you want to read.

The only thing that disturbed me about this particular news article was the headline:
New Study Links Influenza Infection With Bipolar Disorder; Moms Really Can Drive Kids Crazy

Really... let’s blame the moms one more time because moms just don’t get enough blame as it is already. I know the writer was trying to be witty or something, but I wish the media would be more careful about the blame they direct towards moms. 

(getting off my soap box now...)

Friday, May 10, 2013

Sometimes It’s Hard Not to Laugh

Yesterday I had my youngest son write a note in a card to his great grandmother to wish her a happy Mother’s Day. As I headed upstairs to handle something, my oldest son yelled out, “Oh NO! Mom, you have to see what he wrote!”

There in bold, large letters covering half of the card it said,

“Even if you DIE, I still love you.”

Trying hard to keep a straight face, I explained to my little one that Great Grandma may not like to read the word “DIE” in her Mother’s Day card. In a matter-of-fact tone, he respond, “Well she’s almost 100 years old, so she’s going to die soon.”

After a little fancy artwork, we were able to camaflouge the word “Die”, but the memory of it still makes me giggle.

Kid’s say the darndest things...






Tuesday, May 7, 2013

I’d Rather He Pick His Nose!

And the picking continues...

Recently I shared a photo of my youngest son’s DS case and how he’s slowly picking the Nerf material apart. Well yesterday I saw evidence that he’s moved on to other things... like my leather ottoman. First I noticed small brown pieces all over the carpet. Feeling slightly annoyed since I’d just vacuumed, I investigated further and found how he’d picked apart the leather on two corners of the ottoman leaving a trail of leather morsels behind. After sharing this with my husband, my husband mentioned, “And he’s doing it to our walls too!” Turns out he’s picking off the texture on our interior walls and also the material on our bar stools. 

I couldn’t get too angry, I was bummed, but I do realize that the poor kid can’t help it. Half the time I don’t think he even realizes it’s happening until after the fact since he’s usually playing with his DS or something when he does it.

After a mild scolding he explained, “I can’t help it mommy, my mind won’t let me stop.” I begged him to please do it to his DS case or anything else he owns, but not the furniture. Please, not the furniture...



Sunday, May 5, 2013

Sadie's Story: A bipolar child





One of my regular followers who I was blessed to meet in person a few years ago wrote a touching, yet honest article about raising her daughter who was diagnosed with early onset bipolar disorder. As a talented writer, she’s able to eloquently put into words an experience we’re all very familiar with. As an added bonus, a video was also made with her daughter (5th grade) who shares her experience in living with this challenging mental illness. I am so proud of this mama bear and her beautiful daughter to step out and share their experience so that others don’t have to face this alone. Please, click the link below to read their entire story and maybe share Sadie’s video with your kids—my son enjoyed it and could relate to it as well.

*  *  *

Dancing in the rain: the story of a bipolar child

Thursday, May 2, 2013

All is Well

I’m happy to share that my MRI results came back looking good. I was able to see my brain for the first time, pretty cool I have to say! There’s something strange about seeing my “insides” whether it’s my guts or my brain matter, it’s a humble reminder that I’m made of real flesh and bones.

My doctor is now looking into my iron levels, she discovered that I’m borderline anemic and apparently that can really mess with your body. We also talked about my hormone levels shifting as I enter into my 40’s, as she said, “that can cause a lot of unusual stuff!”

If the body jerks continue, she also suggested looking into therapy. As she put it, “you appear to seem pulled together and handling everything pretty well, but considering your circumstances with your children and their challenges, it would be healthy to touch base with a therapist so you can talk one-on-one about what you’re going through to help keep your stress levels low. Maybe schedule a few appointments every 5 years.”

Hmm... maybe I’ll look into that. Has anyone else done that?