Ezra,  Family,  Special Needs Parenting

DMDD: Disruptive Mood Dysregulation Disorder – Our “Missing Piece”

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Our son Ezra – who is now eight years old – has been quite the enigma, hasn’t he? If you are new to our family’s blog – or perhaps visiting via Pinterest or some other social media platform, I highly recommend reading our son’s story in detail, as this post really builds on what I’ve written about him in the past. The nutshell version (TL;DR) is this: Ezra was diagnosed with ADHD, Adjustment Disorder, and sensory differences in 2014; Oppositional Defiant Disorder in 2015; separation anxiety in 2017; and yesterday we received additional diagnoses of DMDD and unspecified anxiety disorder.

Yesterday we received additional diagnoses of DMDD and unspecified anxiety disorder for our son. As I drove home with a diagnosis that WASN'T autism, I still had this phrase in my head: "This is the missing piece." "This" being DMDD, not autism. DMDD is our missing piece. 

Now, for the long version.

To save some time, below is the most recent update on Ezra that I wrote earlier this year – please read if you haven’t already.

Update Spring 2018:

It’s been some time since I’ve written an update about Ezra. He has made significant progress in the last two years.

In May of 2016, at his IEP meeting, his team initially wanted to “mainstream” Ezra and put him into a typical / regular education kindergarten class. His dad and I felt that this would be a mistake. We knew that Ezra needed a smaller class size and more one-on-one education than a regular education class would allow. After nearly an hour of deliberation, we still had not reached an agreement with his IEP team. At that point, the LEA representative said that when there is an impasse such as this – the school defers to the parent if possible.

So instead of a mainstream class, we opted for a placement called “Social Behavior Support.” This consists of one teacher and two aides in a class of ten or less. The class spans K-2 children who have social and emotional needs but no cognitive deficits. We decided that this would be his setting for kindergarten.

June 2016: Preschool Graduation: Ezra’s Trials and Triumphs

September 2016: This is how we survived the summer

We did not find out his school placement until just a few days before he started Kindergarten, but he was placed in a school about 3 miles from our home (and we have since moved even closer).

This class has offered Ezra both incredible support and opportunity for academic growth and achievement. Because of the small nature of the class, they were able to individualize his learning. In kindergarten, he was doing first grade math and reading – while still being supported and able to work on his social skills through the use of social stories, visual aids, calming bins, and “Zones of Regulation” materials.

In September of 2016, Ezra graduated out of Intensive In Home Services after seven months of service (this is far longer than IIHS normally runs). We also made the incredibly hard decision to leave the OT clinic we had been using – due to its distance from our home and the strain of traveling with a special needs kiddo AND a toddler so far twice a week. This decision was made easier because Ezra’s current therapist was moving out of state, so the transition was as smooth as it could have been.

We took a brief therapy break, then began in-home OT with a local clinic and resumed outpatient counseling for Ezra with the LPC that he had been seeing throughout the summer and fall of 2015.

As stability and consistency increased, our stress levels decreased. Ezra no longer was demonstrating any physical aggression toward us – and only a little bit at school and with peers.

Overall, we’ve learned how to “manage” Ezra better. We found ways to take what we had learned in the parent training aspects of day treatment and IIHS and found ways to adapt those things to meet the needs of OUR family. We’ve simplified his rules and do our best to stay “consistent.” (It’s a true illusion, but we try!) Most of all, Ezra grew and mature, which made things easier (slowly) over time.

November 2016: Dear Moms of Preschool Boys: It gets easier, I promise

December 2016: When the Christmas spirit is no longer broken and joy is less of a choice

January 2017: Attention needs: the ADHD child and the momma who loves him

January 2017: A very long life and family update (with lots of pictures!)

March 2017: ADHD Hack: the only four rules we have for our ADHD child

At the beginning of 2017, my husband got a pay raise. In March, we put an offer on our first home. In April, we moved into a wonderful community with a huge basement playroom, a fenced-in yard, and kids all around who regularly are seen riding bikes and running through the neighborhood. It’s quite reminiscent of days-gone-by. But yes, Virginia, there are still neighborhoods like this that exist! Our neighborhood also has a pool.

With Ezra in an even closer school, we began to visit a closer YMCA  – which gave Little Brother and I a much-needed routine while Ezra was in school. We also use the YMCA on the weekends, school breaks, snow days, and summer.

Again – consistency in schedule, routine, and not driving all over town has made things much calmer. Our church is also close-by and has done much to help us through some of our darkest days of special needs parenting.

March 2016: How to help your special needs child succeed in church

April 2017: Never enough: an honest look at what special needs parenting is like

Halfway through kindergarten, they began to push Ezra into a regular education kindergarten class. First – just for specials, lunch, and recess. At the beginning of 2017, they started with one subject at the end of the day – social studies. If he was managing okay during the day in the SBS class, he would get to go to regular at as an incentive. He responded incredibly well. At his kindergarten IEP meeting, he dropped his preschool exceptional child designation of “Developmental Delay, Atypical” and received his grade-school designation of “Emotional Disability.” They also increased his regular education allotted minutes per day, allowing him to add more subjects in regular education if they deemed he could handle it.

June 2017: My Broken Hallelujah: Thoughts on the Last Day of Kindergarten

The summer had its challenges, of course, as it was our first summer with no extra programming for Ezra. Thankfully, Little Brother was becoming a good playmate for Ezra. Between LB, the YMCA, the neighborhood pool, and afternoon quiet times of stories and K’nex – we developed an off-school routine that worked well.

Another factor in having a calmer summer schedule were not having to travel for OT and knowing where he would be going to school for first grade: he would remain with the SAME teacher and the SAME aides in the K-2 SBS class that he was in for Kindergarten. The only unknown was who his regular-ed teacher would be for the subjects he would push-in.

Another thing that we discovered over the summer was a high correlation (and causation) between his bowel habits and his behavior (including sensory seeking, attention problems, verbal aggression, and overall anger/meanness). To honor his growing identity, I will not divulge too much about this. But we have added both medical and natural supplementation to regulate his digestion. It’s an on-going problem, but when his tummy is regular – he is FAR calmer, more focused, less sensory-seeking, and kinder.

Over the summer, I began to feel frustrated with taking him to outpatient counseling. While he had good rapport with his LPC, I didn’t feel like it was really accomplishing anything (other than stressing me out). His LPC agreed that he needed an in-home approach, and for the first time suggested that some of the lingering behavioral problems that were concerning may in fact be AUTISM.

This is the first time that ANY professional has suggested Ezra might be on the spectrum. We found an LPC through another company who could work with our ENTIRE family, in-home, every weekend. This was helpful because Russ was able to join in the therapy.

Much of the distress within our home is due to how Russ and Ezra interact with each other (as they BOTH have mental health problems, anxiety, and are so darn alike). It’s still an ongoing battle with those two, and I have honestly given up trying to “fix it.” (I need to write a blog post about that!) I think that their relationship may always have its challenges, but we continue to see improvement the older that Ezra gets.

This LPC also sat down with me privately and we went through the DSM-V autism spectrum disorder diagnostic criteria. She felt confident in giving Ezra an autism diagnosis. Not everyone recognizes an LPC’s diagnosis as valid, so we are also pursuing independent autism testing at ABC of NC, a local autism organization. Thanks to a massive wait-list, this won’t happen until July of 2018. We are fine with this. An official ASD diagnosis won’t really change much at this point. He’s already receiving school services and therapy services and doing very well across settings, but it may help us in the future. Seeing him as “autistic” has also helped both Russ and I deal better with some of those little “quirks” that we were seeing that we could not seem to understand or “fix.” (Interestingly enough, we are seeing MORE stimming-like behaviors such as ripping things, as well as rigidity and social blind spots the older Ezra gets. I feel under DSM-IV he may have more readily been diagnosed as autistic under the Aspergers diagnostic criteria.)

This LPC retired at the beginning of 2018 and we decided to end all behavioral therapy / counseling for the time being and just try to go it on our own and be a “normal” family for a while. So far, so good.

For first grade, they altered Ezra’s day a bit. He started the day in regular ed for reading and language arts, specials, lunch, and recess. Then he would return to SBS for math and social studies, ending the day there. He did so well with that, that they upped his minutes at his 1st grade IEP meeting and designated him as a REGULAR ED student who receives special needs services a “resource services.” Over the last two weeks (April, May 2018) he has spent a few days ALL DAY in regular ed. Most days he only does math in SBS as a way to calm down and have less noise in the middle of the day. As of May 1st, they have reduced his special education minutes to ***90 minutes per day!!!***

He has only had one instance of physical aggression towards a peer THIS ENTIRE SCHOOL YEAR! All of his teachers have glowing things to say about Ezra.

Between home and school, Ezra is working on second grade math and reading at a 3rd grade level (or above). He is showing giftedness and intense interest in the areas of math and science. He continues to place extremely high on all academic-related testing required for his grade level. His school has an “academically gifted” program that starts in 3rd grade. He will undergo rigorous testing during 2nd grade to qualify for AG placement for third grade. His teacher has already thought ahead and written in special accommodations into his IEP so that he can perform as well on the AG testing as we know he is capable of doing – such as being able to test one-on-one and have frequent breaks to help with focus.

For second grade, he will again use the K-2 SBS class as his “home base.” His SBS teacher (who we will have for yet another year!) will continue to be a go-to contact for us and manage his IEP. He can ALWAYS go back to the SBS class any point in the day he is in distress or needs extra support.

He also NO LONGER needs an aide at church!

We continue to have to adjust his medications and our parenting as he grows. It’s not always rainbows and butterflies – some days we feel like we are dealing with two 2-year-olds (especially when both of the boys are having an “off” day).

BUT – the consistency of home, church, school, YMCA, neighborhood all unchanging for the last year and going forward from here on top of managing his bowel habits better on top of Ezra just GROWING UP AND TURNING INTO A BIG KID – it’s hard to believe he is the same child that I wrote this post about initially nearly four years ago now.

Over the last year, we have been waiting patiently for our turn at a highly renown autism clinic in our state for comprehensive autism testing. Throughout the course of that year, it was always in the back of our minds…this might be autism. 

I often operated under the assumption that it WAS autism. Other days, I was unconvinced. If Ezra had autism, it was very high functioning, atypical, and non-classical.

However, this underlying idea of this might be autism helped me (sometimes) approach Ezra with more compassion, especially in regard to his quirks, stims, and rigidity.

I could write a book on all of the minute little things that Ezra does that are autism-like. However, I could also write a book on all the ways in which Ezra really “breaks the mold” when it comes to an autism diagnosis.

I bring this up because I’ve been pretty open with friends and family about our pursuit of this diagnosis and why I thought it might be appropriate for Ezra. I really did not know what the results of his testing would be, but I knew that this clinic would do right by us and give us the most appropriate diagnosis – be it autism or not. I knew that we would have an answer and be able to move forward after our results appointment, either closing the book on autism or accepting and embracing it fully.

autism testing

The autism clinic did a full round of testing, to include…

  • Hour long intake appointment / interview with parent (me) and child (Ezra)
  • RIAS-2 intelligence testing
  • ADOS-2 autism testing
  • Three parent questionnaires completed by myself
  • Detailed parent interview (that lasted about 2.5 hours)
  • (Vineland 3, SRS-2, BASC-3, Conners 3, and PBRS for any psych people out there who care…)

The clinic also had access to the last four years worth of psychological evaluations, occupational therapy evaluations, intelligence tests, behavioral assessments, person centered profiles and treatment plans, and IEPs from the beginning of 2014. It was the most comprehensive round of testing we had ever put Ezra through.

autism testing

The nutshell version of the results were both expected (in most ways) but surprising (in a few):

-IQ: Ezra’s IQ results were unexpected. We knew he was smart. But, while he is in the 97th percentile for verbal intelligence (which was expected), he is only in the 7th percentile for nonverbal intelligence. This is why he struggles so much socially and why so many of his social symptoms mimic that of autism. Also, because his nonverbal intelligence skills (especially in regard to “nonverbal reasoning through spatial analogies”) are SO low, it pulls his “composite” IQ score down to the 61st percentile – smack. dab. average.

-Adaptive behavior (“the things that people do to function in their everyday lives”): Ezra scored “low” or “moderately low” in nearly every area, except for expressive and written communication, which was “adequate.”

-ADOS results: “not consistent with that of other children who have diagnoses on the autism spectrum.” Ezra showed strengths in “reciprocal social communication” and no “stereotyped behaviors or restricted interests” (results not typical for kids on the spectrum). Weak areas seen on the ADOS were as follows:

  • Differences in understanding of idiomatic expressions (possible weakness in understanding of “pragmatic language”)
  • “Perceptions of others’ emotions and insights into social relationships may be limited for his age” – she used the word “immature”
  • “Creative/inventive actions/play more limited than anticipated” – Ezra is likely to be more concrete and less imaginative in play than other children

The evaluations that I completed about his behavior at home were all in the “At-Risk/Elevated range” or “Clinically Significant/Very Elevated range.” My answers may have been colored by my expectation of an autism diagnoses, not to mention eight years of exhaustion and discouragement. So these results “should be interpreted with caution as it can reflect an overly negative style of responding to the items. However, in some instances, this actually reflects the degrees of difficulty the child is currently experiencing.”

Translation: Mama is worn out, discouraged, and may not give Ezra enough credit on these kinds of evaluations. 

autism testing anxiety ABC of NC

Ezra, before our first intake appointment; he had a lot of anxiety, so brought Foxy and Doggie along to help.

Testing Summary & Future Plans for Treating DMDD:

Ezra demonstrated very strong verbal intelligence; however his nonverbal reasoning skills were significantly weaker and moderately below average for his age. This suggests that he learns and reasons better with words than without words. His adaptive behavior skills were in the Moderately Low range for his age. This is lower than would be expected given his verbal intelligence, reflecting the adverse impact that behavioral and emotional issues have on his day-to-day functioning. In regard to the autism evaluation, though Ezra presented with some behavioral characteristics of ASD, he also presented with strengths that are not typically associated with ASD and did not demonstrate sufficient differences to meet criteria for a diagnosis of ASD.

…Ezra has significant difficulty regulating his activity level, inhibiting impulsive behaviors that can be disruptive to others, and sustaining attention and focus, meeting criteria for ADHD, Combined Presentation. He also presents with a pattern of oppositional and defiant behaviors, significant mood regulation issues, irritability, anxiety, and recurrent temper outbursts. While his behavior pattern could continue to meet criteria for Oppositional Defiant Disorder, the degree of emotional and behavioral regulation issues cannot be accounted for by ADHD alone, nor by combined diagnoses of ADHD and ODD. Therefore, a diagnosis of Disruptive Mood Dysregulation Disorder is more appropriate at this time. In addition, he is often anxious and worried, meeting criteria for Unspecified Anxiety Disorder. Reported patterns of behavioral rigidity (i.e., demanding and controlling behaviors) are most likely related to his attempts to control situations, and in turn to decrease his anxiety. When these attempts are thwarted, the result can be strong outbursts of other defiant behaviors related to escape-avoidance.”

Okay Aprille, blah blah blah psycho stuff blah blah blah, what does this mean? 

It means Ezra is a really complicated kiddo and will continue to need a lot of help.

autism testing anxiety ABC of NC ADOS

Exhausted after the ADOS testing…

Many of the recommendations for DMDD are similar to what we’ve already been doing for the last four years:

  • Behavioral therapy techniques to manage behavior in the home – specifically token economy  – which, as my husband says, “I feel like we have tried that before, but we can try it again…” 
  • Continued behavioral and/or family therapy with a professional
  • Social stories “to assist Ezra with learning ways to differentiate his own feelings, as well as the feelings of others, and to understand how his behavior affects others’ emotional reactions” – recommended were the Carol Gray and the Social Thinking methods

Medication

Now that we have a DMDD diagnosis, we can proceed with trying additional medications, particularly mood stabilizers. There are whole classes of psychiatric medications we have not tried, due to his age. The older he gets the more options we have. I already discussed the idea of trying additional medication with his psychiatrist at his last appointment, so this doctor’s recommendation in the same direction was reassuring.

Non-Verbal Intelligence

The biggest lightbulb for me was his scores on nonverbal intelligence, helping me see more specifically where his social deficits are and how to help him.

There is currently ongoing research and clinical trials with children with DMDD and “Interpretation Bias Training”:

“While research suggests that parent training, psychotherapy, and some medications may be helpful for severe irritability, there are no established treatments for DMDD. Evidence suggests that irritable youth with DMDD tend to misperceive emotional expressions. Compared to healthy controls, children with DMDD were more prone to rate neutral faces as angry. So Leibenluft’s team set out to test interpretation bias training (IBT), a computer game designed to diminish irritable children’s tendency to view ambiguous faces as angry.

Encouraged by these findings, the researchers have launched a larger, more controlled study to learn whether IBT might be effective as a treatment. They are also testing cognitive behavioral therapy (CBT), a talk therapy that aims to change behaviors in response to frustrating events. These are among the first non-drug interventions that seek to help those with DMDD.”

Source: Game Corrects Children’s Misreading of Emotional Faces to Tame Irritability

While we are not in the appropriate geographic area to join this study, I may still email the NIMH group working on this study with DMDD to see if they have any idea of how to help.

Another fascinating 2016 study of interest suggests that there may be a link between “interpretation bias” and attachment to parents, which could have clinical implications. Given that Ezra has attachment problems (overly attached to me while under-attached to Dad, impacted by Russell being deployed while Ezra was an infant)…I find this interesting.

“Attachment theory implies that children’s inclination to interpret attachment figures behavior as supportive and available causally influences children’s trust in their attachment figure’s availability. An experiment was conducted to test whether training children (8–12 years old) to interpret ambiguous interactions with their mothers in a more secure way increases their trust in their mother’s availability. Participants (N = 49) were randomly assigned to either a secure condition to train children to interpret their mother’s behavior as supportive or a neutral placebo condition, where interpretations were unrelated to maternal support. Results supported the hypothesis: After the secure training, children interpreted maternal behavior more securely and trusted more in her availability. This suggests that attachment‐related processing biases causally affect attachment expectations.”

Source: Exploring the Causal Effect of Interpretation Bias on Attachment Expectations

The areas we need to work on with are reading facial expressions, social queues, and other areas of non-verbal intelligence. While we may not have access to the official “interpretation bias training” software, there are a lot of great resources out there already (particularly for kids with autism) to increase the child’s efficacy in these areas. Even a simple search for “facial expressions for kids” on YouTube reveals a lot of resources we can easily start with.

At the very least, I’m going to be trying to get more on Ezra’s eye-level and smile at him more. Baby steps…baby steps.

Adjusting our Expectations

We talked a LOT about lowering our expectations for Ezra. Start small, then smaller. Use more lists. Hold onto the tiniest of moments when he’s happy as the “wins” that they are rather than being discouraged by the meltdowns and outbursts that happen afterward.

The doctor told us that kids with DMDD are really complicated kids, and was empathetic to our plight as exhausted parents weary of the fight. She encouraged us to take small steps to “rebuild” in a sense the relationship that we have with Ezra. She encouraged me especially to continue with personal therapy (which I recently resumed) to help me work through my feelings about the relationship.

Autism, DMDD, and My Mama Heart

So how am I feeling about all of this? Full disclosure, I probably should have waited to write this post, but I process the best through writing, so this was really more for me than for you.

I had a lot of anxiety going into yesterday’s appointment, but drove away with a lot of peace.

I’m not relieved that Ezra doesn’t have autism, but I’m also not disappointed. I am glad to close the book on autism (again), but I also don’t feel like I was crazy to think it was autism – as there’s overlap between autism and DMDD.

While the outcome of this testing was not what I expected, I am confident and at peace that the DMDD diagnosis is accurate.

I’m discouraged and overwhelmed because (once again) it comes back to trying behavioral techniques, social stories, etc. – the bulk of which will fall on my shoulders to implement. It’s daunting in the face of so much exhaustion.

I feel guilty that I haven’t realized more readily where his deficits are, especially in non-verbal intelligence. I get really fixated on HOW SMART he is (because I’m a proud mama!) and have really missed the areas where he’s lacking, causing undue frustration. I feel guilty that I don’t smile more and that he feels unloved because he doesn’t know how to read body language. I feel guilty that behavior charts and incentives have (once again) fallen by the wayside because they are so hard to consistently implement.

I feel anxious about the future. I can see that Ezra’s struggles will be life-long and not something he’s going to “outgrow.” I am anxious about trying new medications and potential side effects of said medications. I’m anxious about starting up therapy (again).

But, I also feel more equipped. We have more knowledge and insight into Ezra than we did yesterday.

I’m THRILLED to let go of the Oppositional Defiant Disorder diagnosis (which we are dropping and replacing with DMDD). I felt like it was “accurate” in regard to his symptoms but never fully captured what we deal with. I felt like saying “Ezra has ODD” was like saying “Ezra has severe abdominal bruising” when he really has severe internal bleeding and the bruising is just the external manifestation of it. DMDD has a far greater scope and far more accurately captures the reality of our everyday life.

I’m also glad for the timing of his DMDD diagnosis. The year that we waited for our opening at the autism clinic was long; but it gave us a lot of time to come to a better understanding both of autism and the diagnostic process.

Also, this year as part of my work toward completing my associates degree (and eventually my bachelor of social work), I am taking Abnormal Psychology which has been helpful, coinciding EXACTLY with the timing of all of his testing.

While I was sitting in the waiting room while Ezra was being administered the ADOS test, I was reading the chapter of my book entitled, “Assessing and Diagnosing Abnormality” – which included testing procedures and a comprehensive history of the DSM! How fitting…

Having this knowledge has given me a lot more faith in “the system” and how the DSM is used for diagnosing abnormality – understanding both its limitations/weaknesses and its usefulness – so I can rest more confidently in the diagnoses we have been given.

About two weeks ago, we covered mood disorders. When I read the description for DMDD, I immediately thought, “Wow, this sounds so much like Ezra!” When I saw DMDD in black and white on his diagnostic report, I already knew a bit about it. Definitely a God thing, in my opinion.

The rainbow puzzle piece symbol has become highly associated with autism awareness, along with the phrase, “Until all the pieces fit.” Those with autism often are a puzzle that takes time and patience to put together.

But as I drove home with a diagnosis that WASN’T autism, I still had this phrase in my head: “This is the missing piece.”

“This” being DMDD, not autism. DMDD is our missing piece. 

Get this print here!
Get this print here!

And maybe, as Ezra grows, the puzzle will grow and we will need to find more missing pieces. We won’t stop until all the pieces fit. But for now, we have taken the missing piece of DMDD and put it in his puzzle. Now, we step back and have a more complete picture of who he is and who he will be in the future.

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