Thursday, February 20, 2014

Another Assessment, Another Diagnosis

Total déjà vu.  I'm back from another assessment, sitting yet again at Starbucks (see also here) to decompress before doing daycare pick-up.  Except that this time, it's with an Awake tea misto instead of a chai latté.  

As it turns out, today's assessment did not at all turn out the way I had expected.  The excitement that I blogged about yesterday has quickly dissipated and been replaced by a feeling of helplessness, fear and worry.

This afternoon, my 3 year old received his 5th diagnosis.  Yup.  No word of a lie.  3 short years, 5 heartbreaking diagnoses.  In some respects, each diagnosis gets easier.  To a certain extent, you have already gone through grieving the loss of the child you thought you would have.  In other ways, each diagnosis reignites your initial fears and worries, reopening a raw wound that you thought had already healed.

Further to Logan's autism assessment, his psychologist had recommended we consult an ADHD specialist who comes to the hospital every few months to consult on very challenging cases.  She told us that the goal was to get a second opinion on the autism diagnosis, adjusting the medication for his ADHD and, possibly, prescribing something for anxiety.  I think that today was that much harder for me because I didn't at all see what happened coming.

As I sat with the specialist, responding to all sorts of questions while he watched Logan play, I glanced at the questionnaire he was filling in as he spoke with me.  The title of the questionnaire was something along the lines of "disruptive mood disorders".  And all of a sudden, I realized that the reason for the appointment was not exactly what I had been led to believe.  It quickly became clear to me that he was investigating an additional diagnosis.  

And so I sat, responding to question after question, wondering whether or not they were assessing my little guy for bipolar disorder.  The thought that Logan could potentially have bipolar disorder first popped into my head during our trip to Tremblant last March.  However, this concern was shortly replaced with the thought that he might be on the Autism spectrum.  Since then, bipolar disorder, or any other similar mental health issue, has been completely off my radar (aside from a possible anxiety disorder).  Until today. 

As I sat in that chair, responding that yes, he tantrums more frequently than 3 times a week (are you kidding me??????).  Yes, the tantrums are very intense and very frequent.  Yes, they seem disproportionate to whatever they are about.  Yes, he is a child who is generally easily irritable.  Yes, yes, yes, yes, yes, yes, yes.  To each and every question.

And suddenly, those mental health issues weren't just on the radar, they were slapping me across the face, shouting "watch out, here I come". 

And so it all went.  I knew before the doctor said a word that Logan was being diagnosed with some sort of a mental health disorder.  And sure enough, the new label that we can add to our binder of diagnoses is disruptive mood dysregulation disorder.  

So what is a disruptive mood dysregulation disorder and how is it different from other similar conditions, such as bipolar disorder or oppositional defiant disorder?  I have spent my afternoon trying to wrap my mind around this exact question.  

Disruptive mood dysregulation disorder is a diagnosis under the category of mood disorders rather than behavioural disorders.  It is a new diagnosis, only as of the DSM-V in May 2013.  It shares common symptoms with oppositional defiant disorder, but is considered to be more severe.  It is somewhat similar to bipolar disorder, except that children with disruptive mood dysregulation disorder present with constant, rather than episodic irritability.  

The doctor explained to me that, given that this is not a behavioural disorder, a standard behaviour management approach will not be effective when Logan is not regulated.  Which is exactly what we have experienced to date.  His ability to comply, regardless of the consequences and supports put into place, varies tremendously based on the current state of his emotional regulation, which fluctuates immensely.  The doctor basically said "it is like there is something explosive inside of him that he cannot control".  Amen.  I wish everyone could understand that. 

So what am I feeling after all of this?  Sad.  Fearful of what the future may hold for him.  Protective.  And exhausted.  

But I also feel misled.  

I had high hopes that today would bring answers of medication that might help ease our daily ongoing challenges when, in fact, that was not at all the goal of this appointment.  Although we have a deeper understanding, I can't help but feel that we are not a single step closer to much of anything at all.  We don't need answers as much as we need help, and that is not what today brought us.  Hence, I guess that what I feel most of all is disappointed.  Completely and utterly disappointed.  And, once again, just a little bit helpless.

As Logan and I left the hospital, walking to the car hand in hand, I said to him "Today was a really hard day for mommy".  And he looked up at me with his gorgeous brown eyes and said "Today was a hard day for me too.  This bag is really heavy".  And I couldn't help but crack up.  A reminder that despite my heavy heart today, there are always silver linings. 

4 comments:

Jaye-Dallas said...

I feel like a weeny with my teething concerns - you're a fierce mama with amazing strength. He's the luckiest little boy to have you as his advocate and mom.

Rosa said...

oh lindsay!! if u need to go for coffee let me know. im home all day with baby Gio. hang in there. u r a tough mommy. love u

Lynn said...

Sending you a big hug!

Jennifer said...

Wow. Sounds like the rubber band kind of day. Pulls you tight, then releases and you are all wobbly and stretched out. Sending you whatever emotional support you ask for!