Tuesday, February 28, 2023

School Refusal & An Updated Diagnosis

How ironic that in my last post (written almost 2 years ago exactly!) I expressed my frustration about supervising my kids in online learning due to the pandemic.  In just a couple of weeks my youngest child (whom I refer to as "Jill" on this blog) will be completing the last term of her school year enrolled in an at-home online curriculum rather than in her regular public school where she's been attending for the past couple of years.  

Jill has had some challenges since she was about preschool age relating to ADHD and anxiety, but when she had her first neuropsychological evaluation done as a preschooler, the psychologist basically said it was too early to make an official diagnosis for ADHD and it would be more effective to wait until she started school to see if patterns such as lack of focus, inattention, inability to sit still. etc. were prevalent in a school setting as well as at home- or if she would grow out of it.  Although her focus and attention span have improved since kindergarten, Jill still lags behind her peers in some areas, emotionally and cognitively.  It's a good reminder to me that kids coming from traumatic backgrounds, including in-utero drug exposure, can sometimes be about half of their chronological age in some areas of development.

Last year we were thrilled and relieved to see some of Jill's ADHD symptoms improve thanks to medication.  She also benefitted from counseling, not just to deal with ADHD/anxiety coping strategies, but to process some of her feelings of grief/loss/identity surrounding her adoption.  I am so grateful for trauma-informed therapists and teachers!   I breathed a sigh of relief when I learned that Jill's 2nd grade teacher last year was a former caseworker for DCFS before she started her teaching career because when I gave some background on Jill's particular challenges and shared that she was adopted from foster care, her teacher immediately "got it."  Jill's current therapist is very patient and has helped her begin to create a narrative (with my help of what information I know) of her adoption story and to clarify some of the questions and misunderstandings she had about how she came to be in our home and family.  I laughed out loud when, during a counseling session with Jill and myself, the therapist turned to her and asked "Who can you go to when you have questions?" (Inferring to go to me) and Jill immediately replied "Google!".

Over the past year, Jill has shown some additional troubling symptoms related to sensory processing issues (not wanting to have her hair brushed, sounds being too loud, etc.) as well as defiance (towards my husband and I but, thankfully, not towards teachers or other authority figures) and sometimes aggression that seemed to appear almost overnight, so my husband and I were thinking "What is going on now?"- just when we thought things were manageable.  I was honestly afraid that our daughter was developing Oppositional Defiant Disorder and I would imagine the worst-case scenario in my mind of her being in juvenile detention before she graduated from high school, if she graduated from high school, that is, or, given her genetics, becoming a homeless drug addict.  

Long story short, Jill had an updated neuropsychological evaluation completed in the Fall by a clinician whom I hand-picked as she had done very thorough evaluations on some of my former clients.  Although some of the diagnoses and findings of Jill's particular evaluation didn't come as a surprise to me, and I was relieved that she wasn't diagnosed as having ODD, there was one diagnosis at the bottom of the page which I had never heard of before which left me scratching my head: Pathological Demand Avoidance Syndrome (or PDA for short).

The most likely reason I was unfamiliar with this diagnosis is that it isn't officially recognized in the U.S. (and therefore, not billable, like Sensory Processing Disorder)  but PDA is recognized in the U.K. as a profile of autism without a stand alone diagnosis of Autism Spectrum Disorder.  Unlike other criteria for ASD and forms of autism, individuals with a PDA profile have little problems with verbal communication, using their imagination, but they do have a rigidity in following demands which is caused by anxiety.  Anxiety- that is the most important thing for me to remember when Jill has a meltdown and goes into a state of fight or flight (yelling, hitting, throwing things, etc.): She's not just "being a brat" or defiant- she is in a state of panic and fear.  

Although logically I know that I need to calm my child down when she's in this kind of a state and empathize with her (or at least validate what she's feeling so that she can feel a bit safer) and model being calm myself,  it is much easier than it sounds- especially when there's plenty of time announced ahead of time for making a transition and there's been a 25-30 minute battle brewing about brushing hair or getting dressed in time to make it to the bus stop in time for school (so that my husband and/or I can consequently make it to work on time after getting the kids off to school).  Sometimes I remain calm during meltdowns, but many times I make things worse by yelling- or even in my body language- making an irritated or "mean" face which triggers my child further.  It doesn't help when my child is hitting me or yelling at me, either.

Thanks to Flourishing Homes & Families for these helpful graphics:

I have a mantra that "It will all work out" which I use especially when I'm not sure if I quite believe it yet.  Because of Jill's school avoidance and subsequent missed school days this year, my husband and I have had to take turns missing work on the days that Jill refuses to go to school.  I admit, I feel like such a failure when I have to call the attendance line at her school and excuse her absence when it's not a broken arm or the flu but "a meltdown"- because most people aren't empathetic to that reasoning unless it's something they've experienced themselves.  It's equally embarrassing when I have to tell my supervisor at work that I can't come into work (again) because my youngest child is refusing to go to school and my spouse is unable to miss work that day.  

I am fortunate that although I do work outside of the home, I am not the primary breadwinner for our family and I don't have to work.  Because of this and other reasons, I gave notice at one of my part-time jobs (hospital social work during daytime hours when my kids are in school) that I would be quitting soon.  However, instead of taking some time off for self-care and/or adding more clients from my other part-time work (doing therapy), I will be staying home during the day monitoring Jill while she does online schooling.  Although part of me feels it will be a good opportunity to connect with each other and for her to spend more time with me, part of me is also resentful when I think "I'll be missing out on seeing more clients/bringing in more money or even getting some exercise or sleeping in when my body needs extra rest."  Parenting has never been about fulfilling one's own wants first, and I realize it's not so black and white and that I can have time for my wants and needs while supervising online learning again, so I need to remind myself "It will all work out."

For any other parents or caregivers out there dealing with school refusal, I think this is a helpful guide if your child isn't too deep into fight/flight/freeze mode and feels calm enough to open up with you (and vice versa):