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):

Emotional Burnout from Online Learning

Remember when I used to write on this blog regularly- or at least more than once a quarter?  Me neither!  I think I have a couple of good excuses though.  

    Excuse #1- Since I last posted- 7 months ago- I’ve had to study for and pass the most important test of my professional career.  

    Excuse #2- I started working at a new workplace – initially meeting clients in person, then meeting virtually when COVID cases rose, and now that I’ve been able to receive my vaccinations, I’m meeting both in person and virtually for those clients who prefer to continue meeting that way.  

    Excuse #3- I’ve been balancing working part-time with overseeing my children do online schooling at home.  I might also add that ALL of my children have varying degrees and subtypes of ADHD- Good Times!

Everyone has been affected differently during this pandemic.  Some have suffered financially, others have suffered physically or lost loved ones and those around them to the virus, and many have suffered emotionally with increasing levels of depression and anxiety.  One of the most difficult and unexpected parts for me of 2020/21 has been parenting- more specifically, trying to balance the physical health and safety of my children (and the health of those within our household and others around us who are higher risk) with their mental well-being.  It is undeniable that whether a child is particularly social or not, social development with peers makes up a huge part of their identity formation and mental health needs.

Two of my kids and I made it through three-fourths of the year doing online learning.  By February (just last month) we were all BURNT OUT.  However, I’ve been feeling more secure knowing that I’ve been vaccinated and that both sets of my children’s at-risk grandparents were able to be vaccinated as well.  We made the decision to send our youngest child, who requires the most supervision doing online learning and was showing the most adverse effects of not being in an in-person school setting, back to school just last week.  I have to admit that my own mental health was a contributing factor to sending her back to school as well!

We decided that our other kids can push through another month doing online learning at home to make the transition easier since it will be the start of a new term by then.  It is already SO much easier for me to be involved in their studies with one less high-maintenance student at home! I am also feeling some guilt lifted because I am able to spend more one-on-one time with my middle child who has typically become accustomed to fending for himself or taking the initiative to get assignments done while I focus my attention on his younger sister who is in need of more direct supervision and guidance.  That’s another thing I’ve discovered- each child is different and there are some cases where a child might thrive, for various reasons, in a virtual classroom or being homeschooled, while another child could seriously suffer emotionally or fall behind academically. 

As for kids “falling behind” in school because of the pandemic, I highly recommend heeding the following counsel written by retired educator Teresa Thayer Snyder, which went viral.  If you don’t have time to read the entire thing the biggest takeaway is ““When the children return to school, we will need to listen to them. Let their stories be told. They have endured a year that has no parallel in modern times.”

“Dear Friends and Colleagues:

I am writing today about the children of this pandemic. After a lifetime of working among the young, I feel compelled to address the concerns that are being expressed by so many of my peers about the deficits the children will demonstrate when they finally return to school. My goodness, what a disconcerting thing to be concerned about in the face of a pandemic which is affecting millions of people around the country and the world. It speaks to one of my biggest fears for the children when they return. In our determination to “catch them up,” I fear that we will lose who they are and what they have learned during this unprecedented era. What on earth are we trying to catch them up on? The models no longer apply, the benchmarks are no longer valid, the trend analyses have been interrupted. We must not forget that those arbitrary measures were established by people, not ordained by God. We can make those invalid measures as obsolete as a crank up telephone! They simply do not apply. When the children return to school, they will have returned with a new history that we will need to help them identify and make sense of. When the children return to school, we will need to listen to them. Let their stories be told. They have endured a year that has no parallel in modern times. There is no assessment that applies to who they are or what they have learned. Remember, their brains did not go into hibernation during this year. Their brains may not have been focused on traditional school material, but they did not stop either. Their brains may have been focused on where their next meal is coming from, or how to care for a younger sibling, or how to deal with missing grandma, or how it feels to have to surrender a beloved pet, or how to deal with death. Our job is to welcome them back and help them write that history.

I sincerely plead with my colleagues, to surrender the artificial constructs that measure achievement and greet the children where they are, not where we think they “should be.” Greet them with art supplies and writing materials, and music and dance and so many other avenues to help them express what has happened to them in their lives during this horrific year. Greet them with stories and books that will help them make sense of an upside-down world. They missed you. They did not miss the test prep. They did not miss the worksheets. They did not miss the reading groups. They did not miss the homework. They missed you.

Resist the pressure from whatever ‘powers that be’ who are in a hurry to “fix” kids and make up for the “lost” time. The time was not lost, it was invested in surviving an historic period of time in their lives—in our lives. The children do not need to be fixed. They are not broken. They need to be heard. They need be given as many tools as we can provide to nurture resilience and help them adjust to a post pandemic world.

Being a teacher is an essential connection between what is and what can be. Please, let what can be demonstrate that our children have so much to share about the world they live in and in helping them make sense of what, for all of us has been unimaginable. This will help them-- and us-- achieve a lot more than can be measured by any assessment tool ever devised. Peace to all who work with the children!”

 Another thing I’ve had to work on while my kids have done remote learning this past year is chilling out and lowering my academic expectations for my kids.  This has been something that has been especially hard for me because I tend to be a perfectionist about checking everything off of a “To Do” list.  Unfortunately, sometimes my intention and approach comes across as a “Homework Nazi” to my kids and backfires, causing more stress and shame for them.  I am reminded that any additional stress or shame they might feel is the very last thing my kids need right now growing up in the middle of a global pandemic.

Back in Mid-November (even before Thanksgiving) my family put up the Christmas tree and our decorations and my kids made a paper chain counting down the days till Christmas.  We were in much need of early Christmas cheer and something to look forward to after a year full of disruption and disappointments.  Today after my little boy gets his online learning done he’s going to make another paper chain- this one counting down the days left till he can join his friends and classmates at school again after being separated from them for over a year.  For him, it will be like Christmas!

How to Raise a Happy, Healthy Child Through Every Phase of Life

The following is a guest post contributed by Abby Holt of craftability.org.

Photo Source: Unsplash

Becoming a parent means diving into the unknown. No matter how much you think you know about what it takes to raise a child, your kid will somehow manage to completely surprise you at every turn! Yes, parenthood means facing new obstacles, especially if your child has special needs, but you don’t have to stumble your way through it all. We’ve collected some valuable resources packed with advice on caring for your child through every year of their lives. 

Creating Structured Routines

Children benefit from having predictable routines set by their parents, and even older children will need your guidance on structuring their routines.

Baby Feeding Schedule: A Guide to the First Year

Best Ways to Help Children Fall Asleep at Nap Time

How to Get Your Teen Up for School

Teaching Your Child to Love Learning

Learning is a lifelong endeavor, and it shouldn’t stop when your child leaves school! 

Helping Your Child Learn to Read

Tips for Homeschooling Math

How to Help Your Teen Develop Good Study Habits

How to Safely Observe Wildlife from Your Home

Encourage Healthy Habits

It’s never too early to start teaching your child about healthy everyday habits, from healthy nutrition tips to physical exercise.

Toddler Eating Habits: A Few Golden Rules

9 Secrets to Managing Your Child’s Screen Time

8 Great Ways to Get Your Teen to Exercise

 Educate Your Child About Relationships

Throughout your child’s life, they will turn to you for advice on friendships and romantic relationships. These resources will help you prepare to answer their questions.

Getting Preschoolers to Share

How to Help Your Child Make Friends

Teach Your Teen to Set Emotional Boundaries

Many parents struggle with insecurity and doubt when they start a family. After all, it’s common for parents to hear lots of conflicting advice about what is best for their children. But with these resources, you’ll be able to discern which tips will be most helpful for you and your family.

Trauma is "Too Much, Too Fast"

I’m considering this post my personal emotional check-in/answer to the question I posed at the end of my previous post.

Back in April I was feeling “overwhelmed” (if I had to choose just one word) when I wrote this post.  Everything was “too much, too fast”.  I’ve been through hard times before and I’d like to think that I’m more patient than the average person, but lately rather than feeling overwhelmed I’ve found myself feeling annoyed and irritable.  I hate the uncertainty in the world and I’m sick of feeling “trapped” inside.  And then, of course, I immediately feel guilty for feeling that way because suffering is relative and there are those who actually are in a trapped situation- kids in abusive or neglectful homes who could benefit from the safety net of public schools opening, women in domestic violence situations who can’t as easily get away from their perpetrator, or the children and families still in detention centers or living in cages.  A cage has got to be the epitome of being trapped.  

My heart is usually drawn, first and foremost, to children and youth who are suffering.  I have admittedly never been interested in working with the elderly- as needful a population as they are.  However, I must admit that I’ve become much more aware of the mental and physical trauma that the senior citizes around the world are currently facing- not to mention financial concerns.  If anyone has a right to complain about lack of connection, feeling trapped, or facing the realistic possibility of death from COVID-19 it’s the elderly. 

I have two elderly parents right now in their late 80s who, fortunately, are still able to be very much connected to and supported by their children, grandchildren, and great grandchildren.  Although my parents have some risk factors in addition to their age, their health is currently stable.  My in-laws, however, who are roughly the same age as my parents, have faced some unique challenges over the past year including having to sell their home of decades and moving into an Assisted Living Center where they could both have access to 24 hour care since their children were not realistically able to provide that to them. [That’s the condensed version of the story anyway- omitting numerous falls, an emergency brain surgery, children taking turns to care for them in their home, and a convalescent period at a rehabiliation center before one of them was able to transition to Assisted Living]. 

My in-laws have adjusted well to their new living situation, but they are both currently struggling with feeling “trapped” as their facility has been on lockdown the past several months.  As upscale and nice as their particular facility is, I overheard my mother-in-law liken the helpless feeling she had of not being able to have visitors in her suite or not being able to leave the facility except for medical appointments and other necessities as being in prison.

Last month I was having a conversation with my mother-in-law (we can visit with them outside their windows or through glass if we want to go in person) and it became evident to me that in addition to the new stress and uncertainty she is facing surrounding COVID restrictions and precautions, she is also still grieving her former independence and home.  Speaking of her home she said, “I don’t believe I’ve ever shed more tears over having to say goodbye to my home than I even have over a living person who has died.”  I hadn’t quite understood the enormity of her grief and loss until I heard her say that.  Because the circumstances leading up to selling her home and moving into an Assisted Living Center were due to an unexpected event and her transition happened within months without much time to process everything, it fell into the category/definition of trauma being “too much, too fast.” 

When I heard my mother-in-law express her grief I also thought of the thousands of children in foster care who- at a moment’s notice- are moved from their homes without time to say goodbye, are given a garbage bag to collect their essentials, and are placed into a stranger’s home in cases where they can’t be placed with relatives.  “Too much, too fast” certainly applies to refugee families who are willing to leave their homeland under dangerous circumstances without much except the clothes on their backs in order to escape poverty, violence, exploitation or government oppression. 

On a personal level of experiencing “too much, too fast”, since I wrote an update four months ago, a couple of significant things have happened in my life.  These aren’t necessarily bad/traumatic things, but they have required much effort and encompass a lot of CHANGE:

-              - I finished up my Masters Degree in Social Work!  Which means, among other things, that I will have more time to read and write just for fun than for a graded assignment or research.

-                -I had a virtual job interview and I will be starting a new position in the Fall doing what I did at my last internship- providing therapy to children and adolescents- most of whom are in the foster care system or have been adopted.

    -Our family moved into a bigger home.  We’ve been looking for homes for three or four years now so although our move wasn’t necessarily unexpected or due to financial hardship or job loss, we certainly didn’t envision that our next move would coincide with a pandemic! 

-       Because we now have more space, we are in a position to house elderly parents, if needed, or to host another foster child or two.  (The prospect of housing not just one but two elderly parents certainly influenced our decision to start the school year out virtually rather than in person).  Although I still feel like we’re getting settled into our house, I am also aware that other populations- including the elderly, children in foster care, or refugees- are at particular risk for going through “too much, too fast” without needed supports in place.  I don’t know for certain who exactly will be joining our household over the next year or two, but I’m a firm believer that if you have more than you need, then you share.         

                               

Collective Trauma & Collective Support

Hey Readers, How’s everyone holding up?  I came across a quote last month which really spoke to me and I wanted to share it now.  What struck me in this quote is the definition of trauma as “too much, too fast.” which is such an accurate description of all of the changes that have taken place in our world, nation, and our personal lives since mid-March of this year.

Another unique and somewhat comforting aspect of this quote is the fact that we are all undergoing a “collective” traumatic experience right now.  Many times trauma can be so personal in nature that very few people are even aware of the silent struggles an individual may be going through.  “In the quiet heart is hidden Sorrow that the eye can’t see” is a line from a favorite Hymn of mine that describes this concept.

What makes this past year and global pandemic different from other kinds of trauma is that everyone is suffering to some degree and it’s not something that can be kept hidden.  One might think that because everyone is having to adapt to change it would make us more united and sympathetic towards each other.  Sadly, I have observed many instances where I’ve found just the opposite is true- especially in online interactions and in social media where judgments, criticisms, debate, and even conspiracy theories take precedence over empathy, encouragement, civil dialogue, and problem-solving.

Don’t get me wrong, I think the internet can be a great tool for connection and many are craving that connection and are especially in need of interaction right now.  I’ve also found it interesting that although both my husband and I would describe ourselves as introverts, we’ve both really missed interacting with others face-to-face on a regular basis.  I admittedly have not left the house much at all over the past 4 or so months.  Here’s something I shared on my personal Facebook profile regarding that:

Last week I had to get my driver’s license renewed and my husband came along to do a couple of errands as well.  I scheduled my appointment with the DMV early in the morning, so I decided to get a much-needed haircut before returning home.  My husband needed a trim and he and I were the only ones in the hair salon, and afterwards he was teasing me about how gabby I was with the lady cutting my hair.  I am usually much more of a listener than a talker, but apparently I was so excited to interact with someone in person that I guess I just kept going on and on- whereas other times I may have thought “Just cut my hair- no need to ask me questions.”  That was also definitely the first time I’ve been asked to wash my hands before getting a haircut and had a mask covering my face the entire time.

Going back to the quote that I shared: “Of course you aren’t as productive, feeling foggy, or wondering how you can possibly go through so many waves of emotions all in the same day.”  YES!  I love the validation that it’s natural to experience many different emotions in such a short time.  I know that my physical energy, productiveness, and moods have greatly fluctuated from day to day.  It’s okay to have ambivalent feelings.  For example, I love my children dearly and I find it so ironic that earlier this year I was feeling so guilty/resentful for not having more time apart from my schooling and work to spend with them.  And now that we’ve been quarantined together for almost five months there are days when they absolutely drive me CRAZY and I just need to go in a different room to have my own space.  School this year will be another huge adjustment as we recently made the decision to enroll our kids in online learning for at least the first term or two and then we’ll play things by ear.

At the beginning of this post I asked a question: How’s everyone holding up?  It wasn’t a rhetorical question!  I often hold a check-in at the beginning of my counseling sessions with younger clients with the objective of them simply being able to identify what they are feeling, often times with the aid of a visual chart.  Let’s consider this a group check-in.  Using the image below or however you feel like- comment how you’re doing, what your biggest challenge or right now is, or what you’ve found helpful to make it through each day.