Jill at 12 1/2 Years Old

Jill’s elementary school got a new principal halfway through the year and I am pleased to announce that she has not yet been called to his office.  However, on average, we get about one email a month from Jill’s sixth grade teacher with a report of something concerning that our daughter has said or done that needs to be brought to our attention.  Just yesterday the subject line from her teacher read “Incident yesterday”.  I panic whenever I get these emails and as I proceed to read what happened I shake my head and think “Why would she do that?”  Her teachers must think we’re the worst parents ever to have a child act like that.”

In reality, Jill’s teachers the past couple of years have been very patient.  I think it helps when I am actively involved in going to parent teacher conferences and IEP meetings or, in the past, volunteering when I can so they know I’m not a deadbeat and she doesn’t come from a “broken home.”

Although Jill usually reserves her meltdowns for home she did recently break down at a friend’s house to the point that her friend’s mom contacted me afterwards and diplomatically asked, “How can we best support Jill (and you) the next time that happens?” I appreciated this mom’s approach as I was already feeling on the defensive about how Jill’s behavior might be a reflection of our family life or of my ability to parent.  I gave this mom a little more background on Jill- some of which she wasn’t aware- and that seemed helpful.

Since graduating from her IOP earlier this year, Jill has been getting two different therapies: Play therapy with my husband and I to increase attachment and individual therapy (at her request) with a new therapist who I chose for her specifically because she has experience  working with kids with conduct disorder.  Although Jill has never been officially diagnosed with conduct disorder, I figure some of the symptoms of PDA and autism can be pretty similar.

Unlike me, who am trained in PCIT (Parent-Child Interaction Therapy), Jill’s play therapist is trained in Theraplay, and is the most gentle and patient woman ever- think of if Mr. Rogers was a woman.  Of course, some of the activities have had to be modified to be more appropriate for a pre-teen than a child and it took a bit for this play therapist to get used to Jill’s dark humor when she would say something inappropriate or outright weird.

Jill starts junior high next year and I’m grateful that Jack is just a year older than she is to keep an eye out for her.  They are the only two people in our family who share DNA as full biological siblings, and yet they couldn’t be more different in temperament.  Jack is more like my husband and I- conscientious and fairly responsible (though often forgetful) and pretty mellow, while Jill couldn’t care less what people think of her and she can go from 0-60 in rapid mood changes.  I’ve also learned over the past couple of years that females with autism are more likely to experience PMDD, so that’s gonna make for some extra fun teenage years if that applies to Jill.

One example of how Jill doesn’t care what people think is when I was getting ready for church one morning and I was delighted that she chose to come that day.  I was in the shower and heard some banging and yelling at the bathroom door.  “I’m in the SHOWER- I can’t talk right now- What do you need? Is it an emergency?”  I turned off the water when the yelling persisted and Jill proceeded to say- “Mom- I want to wear a suit and tie to church!”  My enthusiasm at her coming to church that day was immediately deflated and I thought, ‘I can’t deal with this right now.”  I know that it doesn’t matter what anyone wears to church because “The Lord looketh on the heart.” but it’s especially awkward when your husband happens to be the leader of the congregation and you feel (whether accurate or not) that your family is under extra scrutiny.   She ended up wearing a hoodie over her dress that day and hasn’t brought it up again yet.

On a more serious note, Jill has only had one incident of self-harm since graduating from her IOP. She’s not even a teenager yet and I’m aware that things could be so much worse, but boy do we worry about her future. One day Em even confessed to me “Mom- Jill scares me.”  This coming from a sister who is six years older.   I never thought I’d be a parent who would be dealing with some of the issues I’ve dealt with the past couple of years.  It’s been truly humbling.

On that note, I want to give s shoutout to Cheryl Cardall and her Love Like A Motherr nonprofit organization which supports moms of kids with intense mental health concerns.  I discovered Cheryl’s podcast, Fight Like a Mother, a year or so ago and met Cheryl briefly in person at a conference last year.  She oozed sincerity and goodness as I heard her share some of her parenting experiences and I hope that any other parents out there who are experiencing similar parenting challenges can feel like they’re not so alone by the resources she offers.

Em's Moms

I mentioned back in this post that I hadn’t talked to Em’s birth mom since Em left home for 7 weeks to live with her.  Although she’s not living with her anymore, Em still keeps in touch with her birth mom and occasionally will even spend the night if they hang out too late together as Em still doesn’t have her driver’s license and can’t drive herself home.

It wasn’t until an emergency last month that brought Em’s birth mom and I (and my husband) to interact with each other again.  I got a text from Em the night before that she would be spending the night at her birth mom’s after a family party went late.  I admit, I tried to talk her out of going in the first place as she had missed some school that week from being sick and she still seemed pretty run down.  It was a school night that night so my biggest concern was that Em made it to school on time the next day as she is just months away from graduating from high school and she can’t afford to miss any school or get behind in her classes.

The next morning as I was getting my younger kids off to school and getting ready to go to work I checked my phone to see if Em would make it to school on time for her first class (she has enough credits that she can sleep in as a “home release” for her first two classes both A and B days of school which has been beneficial for her emotional and physical health).  “Oh good!” I thought to myself as I saw her location-“they’re headed in the right direction on the freeway for her to get to school on time.”  My husband happened to be working from home that day, and I guess great minds think alike (and/or we’re both naturally overprotective) because a few minutes later he came hurriedly upstairs after he had checked to make sure Em made it to school and asked me with concern in his voice, “Why is Em’s location showing the hospital?  It even looks like it’s in the E.R.?”

My heart started racing and I checked my phone to confirm Em’s latest location and sure enough, her location showed she was at a hospital.  I immediately texted Em and tried calling her but she was not answering.  Of course, emergencies only happen at inconvenient times, so although I normally don’t drive my youngest daughter to school, as soon as I texted Em’s birth mom to find out what was going on I had to drop Jill off at school that morning so that her creative but bulky Valentine’s Day box wouldn’t get ruined on the bus.

“Is Em okay?  I texted. She’s not returning my texts or answering my calls and her location shows the hospital.”  A few minutes later I got the response “No- she’s not.  I was driving her to school and she said her stomach hurt and then she passed out.  I couldn’t revive her, so I took her to the ER.” 

My husband headed to the hospital while I drove my youngest to school while simultaneously using voice command to send messages to my boss and clients that I’d have to cancel appointments for the day due to an emergency- all the while not knowing if it would turn out to be a “big” or a “little” emergency.

After I dropped Jill off to school I began to imagine all sorts of scenarios, and because my mind naturally goes to the worst case, I thought to myself, “If this incident has anything whatsoever to do with drugs or alcohol Em is cutting off ALL contact with her birth mom.”  Em’s birth mom has worked very hard to remain sober, so although it wasn’t a likely scenario, you never know.  I knew the stomach pain wasn’t appendicitis because Em had an emergency appendectomy a couple of years ago.  “Shoot- what if she’s pregnant!” Also highly unlikely for good reasons, but still a possibility.  And then as I was rushing to get to the hospital amid all of my panic and racing thoughts I had the distinct impression come to me that I needed to be gentle and loving towards Em’s birth mom.  I’m not normally a mean person, but my Mama Bear instincts were revving up and I was admittedly annoyed that I was the one who had to reach out to Em’s birth mom first to find out my child was in the hospital, rather than her immediately calling me or my husband and letting us know.

When I arrived at the ER and announced which patient I was looking for a nurse came out and asked, “How are you related to the patient?”  “I’m mom.” I answered- somewhat more emphatically than I expected.  The nurse hesitated for a moment and then said, “Okay . . . just making sure” and showed me to the room where my husband and Em’s birth mom already were. It must have been kind of confusing for one “mom” to bring a daughter in and then have another “mom” come.  In addition, when the nurses and staff were talking to us  it was a little awkward as they wanted to communicate with all three of us, but weren’t sure who to turn and look at as they directed their questions and updates.

As soon as I saw Em’s birth mom in the room I went up to her and gave her a hug.  She looked somewhat surprised and a little relieved. Maybe she thought I was going to chew her out or place blame.  I’m not normally a hugger, but l felt an undeniable prompting to be gentle and loving and it’s like some force outside of myself was propelling me to make that gesture.

Em had at least one IV hooked up to her as well as an oxygen mask over her face.  The dr explained that her oxygen was low on arrival. Apparently they also had also inserted a catheter and had to cut into some of her clothes. 

“I told them she has POTS,” Em’s birth mom exclaimed . . . but I don’t know which medications she’s on.”  When the nurses made room and it was safe to do so my husband moved to Em’s bed and held her hand and began talking to her.  Although she was still pretty out of it, she was able to squeeze his hand to let him know she could hear him.  Meanwhile, I sat down in a chair next to a nurse at a computer and started rattling off all of Em’s medications as well as her diagnoses.  Em’s birth mom looked a little intimidated and flustered in a way.

The good news is that Em only had to spend about four hours in the ER that morning before becoming stable enough to be discharged and come home.  I felt bad that I had to cancel my clients that day- although I knew that none of them were in active crisis situations.  It felt good to stay home with Em and take care of her because she’s at an age and stage in her life when she wants to be so independent that she is somewhat resistant to letting me care for her and she sees any attempts of doing so on my part as me trying to “control” her while I view it as simply supporting her and being her parent.

The most concerning part of that day was not knowing exactly what triggered Em’s episode- other than her history of POTS. Em’s birth mom listed off everything to the hospital staff that Em had eaten the night before and that morning – nothing new- and the only medication she had taken that morning were her ADHD meds and some cold medicine as she was getting over being sick.  The doctor told us that he was a little worried when first Em arrived at the ER because her glassy eyed look and state of unresponsiveness reminded him of recent patients he had seen who have come in after overdosing on Benadryl- even going so far as to hallucinate and try and grab things that weren’t really there. But Em isn’t dumb enough to do that.

A tox screen was done as well as other lab work and at least one ultrasound to rule things out. No drugs or alcohol were involved.  Maybe it was just a matter of Em’s body being run down in the first place.  And, of course, morning coffee certainly doesn’t help with tachycardia symptoms (Em has stated that’s one of the reasons she likes her birth mom’s house over ours- her birth mom always has coffee and we don’t have any).  Most of the time when Em has issues with racing heart and dizziness it’s considered “pre-syncope”- feeling like she’s going to pass out- but rarely does she get to the point of actually passing out. We had a scary experience over the summer after she got her wisdom teeth out and had a bad reaction to the anesthesia while recovering at home. We couldn’t get her fully awake and when the paramedics arrived at our house and took her blood pressure and heart rate and saw the results they immediately asked “Which ER do you want us to take her to?”

The week after Em’s recent ER visit I followed up by getting her in to a specialist who had seen her before who ordered a few more tests and then went over treatment options, including reminders of the things she should already be doing: drink plenty of water and electrolytes, increase salt intake, avoid caffeine, wear compression socks or her abdominal binder, and continue in physical therapy. No new medication will be prescribed until she does all those things and they don’t relieve her symptoms.  Em has done physical therapy previously to build up her stamina as well as to help with hypermobility issues (it’s possible she has Ehlers Danlos as well, but if so it’s a mild case).  Although at the appointment she told the nurse “I guess I could do PT again if it’s not on the days I exercise at school in yoga class” (which would make her too tired to do both) when I tried making an appointment for her a couple days later she said “I don’t have to go because I’m 18 now.”  But it’s part of your recommended treatment plan!” I retorted. “I don’t want you to end up in the ER or Instacare again!”  (A couple of weeks earlier she kept stumbling at school despite the fact that she had eaten and worn her compression socks that day.  It’s the weirdest thing to see happen because her legs just “give out” and she looks like a drunk person walking.  I thought she may have been dehydrated and needed an IV which is why I took her to InstaCare, but by the time we saw the dr her legs were well enough that she could get out of the wheelchair they put her in when she arrived.)

It’s an awkward position to be in when you’re parenting an 18 year old who wants all the freedom of adulthood but not necessarily the responsibilities that come with taking care of yourself and being independent.  Speaking of being independent, Em has expressed that if she does leave home after graduating from high school since she already gave living with her birth mom a try and that didn’t work out as a permanent option, she would like to move in with her boyfriend and his family.  I try to remain calm and not overreact when she brings it up, but when I ask logical questions like “Are you going to pay rent?”  “Are you going to pay for your shampoo and makeup?” she just gets annoyed with me.

It also makes me wonder, “Is our house (and family) really that bad?”  Occasionally Em will dramatically complain that “We don’t have any good food in the house! I bet ______ (my birth mom) would take me to Chik-Fil-A right now if I asked!” I try to let complaints like that slide and usually just end up rolling my eyes.  Those reasons to move out seem so superficial to me.  But a couple of months ago Em did bring up a legitimate reason that I honestly hadn’t considered from her perspective.  She mentioned that one of the reasons she wanted to leave our house in the first place and live with her birth mom is because our house can get so noisy- mostly because of when Jill has meltdowns and yells. And although I’d like to say that I always remain calm when my child is out of control- especially when she’s throwing things, hitting or kicking us, or swearing at us- the truth is that sometimes I just get so frustrated that I can’t help but yell back.

Last week Em had Senior Prom so she invited her birth mom and biological half sister to our house before the dance to do her hair and makeup.  I was cordial, but tried giving them their “space” as well- (even though it was in my own home).  It’s an interesting dynamic but for now we’re in a good place.  I would love Em to spend Easter weekend with our family but I also know that her birth mom has talked about plans as well.  I hate when it feels like a competition.

School Update- Jill

The week before Christmas Break I had a meeting with Jill's teacher, her Vice Principal, the school psychologist, and the school's speech therapist about if Jill qualified for an IEP, based on recommendations from the speech pathologist at Jill's IOP last year who suggested she be assessed. The Occupational Therapist couldn't make it to the meeting so she called me earlier in the day with her report. 

I have learned that there are thirteen different categories of disability in reference to special education under IDEA, including:

1. Specific Learning Disability (SLD)
2. Speech or Language Impairment
3. Other Health Impairment
4. Autism Spectrum Disorder (ASD)
5. Intellectual Disability
6. Emotional Disturbance
7. Developmental Delay
8. Multiple Disabilities
9. Deaf-Blindness
10. Deafness
11. Hearing Impairment
12. Orthopedic Impairment
13. Traumatic Brain Injury (TBI)

Jill's school psychologist (who conducted the majority of testing) informed me that Jill would be assessed under the category of Autism to see if she qualified for an Individualized Education Plan. Speaking of autism, pretty cool that there's now a Barbie with autism (which, I've read, was designed by an autistic person), but I laughed even harder when I saw this: 

Although the meeting was over an hour, the team didn't tell me until about ten minutes before it actually ended that Jill did not meet the qualifications for an IEP since the majority of the meeting was spent going over her different testing results.  I kind of wish they would have told me their decision at the beginning and then backed it up with the data instead of waiting till the end to learn that she didn't qualify.  Evidently, she did much better on the speech assessment with the speech therapist than she did on the same assessment at her IOP and that was the main area of concern.

I have mixed feelings about Jill not qualifying for an IEP.  In one sense, I guess I should feel relieved, but in another sense I was left feeling like I do much of the time with Jill's special needs- "Yes, she has special needs- but she's getting by and her needs aren't severe enough to require serious intervention." Her teacher confirmed that sometimes she struggles in class, but not enought to have to actually be pulled out of class.  That being said, she still has her 504 Plan and I thought it was very convenient that at the next Parent Teacher Conference the Vice Principal will be in attendance to update her 504 with her teacher and me.

I think my biggest concern is that Jill will be starting junior high next year and I just want her to be successful (meaning, not overwhelmed). I am curious if having different classes and teachers instead of just one classroom and teacher all day will help Jill's AuDHD brain. I just want her to have the accommodations she needs.

One part of the IEP Meeting where I literally almost cried in both stress and relief at how far Jill has come in actually attending school is when we looked at her attendance record from her 4th grade year with 47 absences and from her 5th grade year with 52 absences.  This year she has only had two absences from legitimate sickness. It shouldn’t come as a surprise then, when I can across this statistic about school attendance:

I am happy to report that Jill enjoys the social aspect of school and because of that I am able to successfully get her off to school most days. However, this morning after a brief argument/insistence that she wear her coat today (It was 19 degrees outside by the time she left for the bus stop and I could see her breath) she reluctantly put it on, said some choice words to me and then I said goodbye and closed the front door. Her argument about not putting it on is that it “makes her sweaty” because it’s so warm. This is the same coat I purposely had her pick out herself so that there would be no complaints. [Tell me you have a child with sensory issues without telling me you have a child with sensory issues]!  About an hour later when my son left for school he said “Mom- did you know that Jill’s coat is on the porch?” [Tell me you have a PDA child without telling me you have a PDA child!]

Em is Back

I feel extremely grateful because right now all three of my children are watching a movie together, snacking on Doritos, and occasionally laughing at some line from the movie or an inside joke they have between each other. The best part is that it’s not just temporary. Over the weekend Em decided she wanted to return home to us- for good.

It took less than 7 weeks for our daughter and her birth mom to grow out of the Honeymoon Phase with each other after our daughter decided to leave our house and move in with her birth mom (who happens to live 20 minutes away from us). 

Although my husband and I knew that our daughter wouldn’t be in danger when she left, we were also aware of some red flags that filled us with concern for Em’s sake.  The last couple of times we’ve talked with Em she would hint at things not being ideal. It wasn’t until a couple of days ago that she shared some more details with us and it took every bit of self-restraint within me to stop from exclaiming “I told you so!"

                                        

Em shared that she started feeling like “a burden” to her birth mom. After all, she still doesn’t have a driver’s license or a job so she would have to be driven to and from school each day or anywhere else she wanted to go. Although we would like her to get her license soon, our biggest priority for her is staying in school and graduating next year.

Not only was Em feeling like a burden, but her birth mom made some very direct comments to her about "growing up" and other things which would most likely make anyone feel pretty much like a burden as well. Em learned that, like most parents, her birth mom isn’t perfect despite the pedestal Em seems to have put her on.

I also don’t think Em’s birth mom was fully aware of Em’s emotional immaturity, her special needs (I haven't written much about that but perhaps I will in the future), and certainly her physical conditions [Em was formally diagnosed with POTS last year after a couple of years of troubling symptoms]. However, after one recent episode while living with her birth mom when Em started feeling dizzy and had to sit down, her birth mom implied that she was “faking it” for attention when, in fact, all of Em’s teachers at school have notice of her medical condition on file titled "Health Plan" including her diagnosis and what to do in case of sudden low blood pressure or wonky heart rate.

That’s another reason why it’s been hard for Em to look for a job- not many jobs for teenagers allow them to sit or rest when needed. In fast food or retail, for example, you’re always on the go.

I think one of the saddest parts of Em moving back home with us was her birth mom’s reaction when Em told her about her decision.  Her birth mom basically gaslighted her, tried to make her feel guilty, and then accused her of “taking advantage of me.” Fortunately, the invitation to visit if wanted has still been left open for my daughter from her birth mom.

I’m not naive enough to think that things between Em and my husband and I as her parents will automatically be perfect from now on. Of course we’re still going to have clashes. But I think the past 7 weeks have made Em realizes that our home is a pretty good place to be and that despite our faults as parents, we will always love her and welcome her.

October 2025 Update- Part 2 (Em)

Six weeks ago tonight our oldest daughter, “Em” made the decision to leave our home and go live with her birth mom.  Since then Em has joined us a couple of times for family celebrations and last week she let us take her out to ice cream after her choir concert (which has been tradition), but other than that she has not expressed any desire to return back home.

Occasionally I still find myself automatically setting Em’s place at the table and then the realization hits me and I slowly put the plate and silverware back.  I still text her quite regularly as well- just to check up on her, occasionally to nag her about a missing assignment (because that’s my job and I just want her to graduate from high school at this point!), and sometimes just to share a silly meme.  Much like when she was living at home, sometimes she’ll respond and other times she’ll just ignore my texts.  I finally got out our Halloween decorations a couple of weeks ago and came across a cute little cloth ghost she made as a pre-schooler.  I immediately texted her, “Remember this?!” That time she actually responded back in the affirmative. 

When we were at Em’s choir concert last week I realized I didn’t know any of the songs her class would be performing as she hadn’t been practicing at home like she normally would have been. Little things like that make me feel a tinge of grief.  A few more people in our neighborhood and church congregation have now heard the news that she’s not at home anymore and those close to me have expressed their condolences.  As for Jack and Jill, they have each reacted a little differently to their older sister being gone.  One weekend Em told us she might stop by and spend an evening with her brother and sister, but then she decided not to.  When Jill find out she wasn’t coming after all she said “It’s kind of stupid how she cares more about her birth family than the family she’s been living with her whole life.”  Jack pretends like he doesn’t care, but I know that deep down he does.  She actually spent the night when it was his birthday and we got home from dinner later- and then she went back to her birth mom’s the next day.  Jack told us “I slept a lot better knowing she was home.”   Then on the weekend when he was looking forward to playing video games and hanging out with her but she changed her mind he just tried to casually brush it off and said  something like “She just doesn’t care about me anymore.”  One thing I’ve been reminded of with teenagers is that, like preschoolers, they can be so egocentric.

As for Em’s birth mother- I still haven’t heard one word from her.  Not one phone call or text to me to tell me “Hey- she’s doing alright.”  Nothing.  On days when I’m not so angry or resentful I think “I get it- she’s trying to make up for 18 lost years” because I generally try to give other people the benefit of the doubt.  But I’ve also learned over the past couple of years of opening up this adoption that Em’s birth mother has never really grieved placing Em. She never went back for counseling through the agency we used.  She had another baby girl about a year and a half after Em was born- whom she parented- and now has partial custody of.  When my husband and I and Em’s birth mom were initially figuring out boundaries and how often she and Em would be getting together in person we soon learned that Em’s birth mom was approaching it as if it was a shared custody/coparenting arrangement (as she has with her other children) rather than respecting the preferred boundaries that my husband and I had set as Em’s parents.

I’d like to think that if I had another person’s child in my care I would encourage them (even if say, they had run away) to call their parents and let them know they’re doing okay.  If they wouldn’t I would certainly reach out to the parents and let them know- “Don’t worry- they’re in good hands.  They’re safe.”   That’s one thing we’d try to do with the birth parents of babies and kids we fostered over the years because I can’t imagine the loss and worry or even guilt they might be feeling- regardless of the reason their child ended up in state custody.  We’d try, through our actions, to let the birth families know “Hey- we’re not trying to take your child.  But we promise they will be safe and loved until they come back to you.”

The relationship between my husband and I and Em’s birth mother has turned into more of a competition rather than working together with the best interest of a child at the center.  I feel like we’re the “mean” parents who make sure Em has done her homework or cleaned her room while Em’s birth mom is the “fun” weekend parent who gets to take her to Disneyland or to do fun things without any real parenting or discipline involved.  I don’t know how long the “Honeymoon period” is going to last, but Em did mention to us, the night of her choir concert, that her birth mother recently told her (when she was encouraging her to get a job or something) “Well, when I was your age I had a baby AND a job, so I don’t have much sympathy for those who don’t work!”- something to that effect.  My husband and I were trying so hard to bite our tongues and make “Well maybe don’t drop out of school and sleep around!” come out as nicely and constructively as possible for the sake of teaching our daughter.  We sincerely try not to talk smack of any of our children’s birth parents in front of them- but considering their histories and how our children have been affected as a direct result of their actions- sometimes it’s so hard not to!

Most of the time I obviously really miss Em.  But I can’t deny that about a month ago I was extremely angry at her (and didn’t hold back expressing my feelings about it) when I realized she didn’t spend the night at her birth mother’s house- and then lied to me about it.  She turned off her location sharing on her phone* for a while after that because I was being “creepy” trying to check up on her.  Admittedly, my biggest motivation for tracking her is to make sure she makes it to school every day.  Fortunately, my husband convinced her to turn her location sharing back on so that I can see where she is for her safety.

 *Technically it is our phone because we’re the ones paying for it.  We’ve gone back and forth wondering if we should take possession of her phone (and IPAD) now that she’s an “adult” and doesn’t need us anymore, but we’re pretty sure if we did her birth mom would just get her new ones and we want to keep the lines of communication open.

Em is always more than welcome to come back home- but she is the one who has to want it first.

October 2025 Update- Part 1 (Jill)

Jill spent eight weeks in her intensive outpatient treatment and is now back in “regular” school full-time. Technically, the last two weeks she spent only 3 and a half hours twice a week at her IOP and then the other three weekdays she would spend the entire school day at her old school.  We decided to go that route so that there was a bit of a transition and not too much of a shock or burnout from going back to regular school full-time all at once. 

I also contacted the school counselor before she returned to school to set up regular check-ins with her and met with her teacher and the principal in person about updating her 504 and giving them a summary of any concerns and ways to be of support to Jill.  However, before meeting with the principal and her teacher I was required to meet with the Student and Family Resources Director on the district level at the district offices who met with Jill and I (since she’s been out of school for most of the first term) and he documented that she did, in fact, qualify for accommodations and would be returning to public school full-time.

I’ve never had a child who qualified for an IEP before, but after receiving assessment results from a speech pathologist at Jill’s IOP the last week she was there, they recommended she get some testing done and have accommodations put in place for receptive language. So, after more testing under the direction of the school psychologist she’ll most likely not only have a 504, but an IEP as well.  Jill has been a chatterbox since she was preschool aged and has never had any problems with speaking or forming sounds, but I guess things like picking up on social cues/nonverbal communication and taking things literally rather than figuratively (indicative of autism) can fall under the category of speech/language concerns.   

I should probably be used to it by now, but when I was looking at Jill’s discharge paperwork I started feeling a little overwhelmed and sad because there wasn’t just one diagnosis listed- but multiple: depression, anxiety, ADHD, and autism.  I think raising a child with just one of those challenges could be difficult, but then when there’s several overlapping symptoms all at once it just can feel a little . . . discouraging.  Jill hasn’t even entered junior high yet and I worry what things will look like in the future when I use how she is currently as a baseline.

As for continuing care we can actually use the staff at her outpatient treatment center for medication management which will be slightly easier than working through her psychiatrist every three months or so.  We have also decided to have her continue seeing the therapist she saw for individual therapy at her Outpatient program for ongoing therapy (for now at least) since they have a good relationship and she “fired” her last therapist for siding too much on issues with mom and dad.  Jill’s therapist at her IOP was very knowledgeable about autism and even recommended some good books and resources for us, including this book.

However, her therapist also suggested that we might try to find a clinician more knowledgeable about adoption issues.  I laughed when I got a list of some providers who fit that criteria and immediately noticed that a couple of them were my former coworkers.  I have no doubt they would be great, but that would also be slightly awkward for my child to complain to them on occasion about how mean her parents are and how much she hates her family, etc.

Speaking of adoption competent therapists, last month (after completing a final exam) I completed a yearlong professional Training for Adoption Competency (TAC) for mental health practitioners and other adoption professionals under the Center for Adoption Support and Education (CASE).  We discussed, in detail, the seven core issues of adoption and best clinical practices for clients impacted by adoption (adoptees, birth parents, adoptive parents, grandparents, siblings, etc.)  Although I currently only have one client who is a transracial adoptee, I had a lot of success in working through some of the chapters from this book with her:

I recently recommended this book to another adoptive mom as well.

Loss and Hidden Sorrow

 I started writing this yesterday and was able to finish this morning before my first appointment.

There’s been a lot of loss the past couple of days in our nation and in my heart.  Today is 9/11 and there’s a collective grief and outpouring of reverence as we remember the lives lost and how the world has changed since then.  Yesterday there was a political assassination in my own state, and then just hours later I got word of yet another school shooting. Such tragedies can serve as a call to action for change and either bring people together in unity or create more division.

On a personal level, tomorrow is the death anniversary of my mom.  I’ll have time to visit her grave before I go to work. Hers is a loss I share with my siblings and other family members, so we can be of support to each other and lean on each other, if needed.

The past couple of days I’ve been experiencing a loss that isn’t publicly known.  Only my husband and children, a couple of my siblings, and a trusted church leader are aware.  This one is an ambiguous loss- because the person who has been “lost”- my oldest adopted daughter- is still alive- but she has chosen not to physically be in our home anymore.

I’ll back up to how we got to his point. This was my Facebook status from a couple of years ago:

                                     

Over the past couple of years our daughter has had an open relationship with not only her birth mother, but with birth siblings.  She’s been able to meet aunts, uncles, a few cousins, and grandparents she was previously unaware of.  I mention these relationships because 20 years ago when we started our adoption journey the focus in our preparation and training was on the “adoption triad”- meaning adopted child, birth parents, and adoptive parents.  However, now I prefer using the more updated and inclusive term “adoption kinship network” because adoption involves many more people than just parents and child. 

Something my daughter never had before opening up the relationship with her birth family is older sisters, and now she does! How cool is it that my daughter was able to be one of her half sister’s bridesmaids at her wedding?  How fun for my daughter that she gets doubly spoiled with gifts and baskets and stockings during Easter and Christmas? 

For the most part, things have been “good” for my daughter with her open adoption experience, but my husband and I have faced some challenges.  What started out as an invitation to keep things open with her birth mother has morphed into more of a coparenting arrangement, not respecting our boundaries, and on more than one occasion, going behind our backs.

Ideally, a successful open adoption brings to mind words and concepts like “sharing” “mutual respect” and “multiplication of love” (rather than something finite that can be divided up into smaller pieces).  But without boundaries, open communication, and mutual respect things can turn into resentment, jealousy, and competition. 

I think what’s most surprising to me is that I’m generally a pretty chill, kind person and I’ve always been good at sharing.  But things have transpired over the past year that have made me realize I’m not as good as “sharing” as I thought- especially when I feel like my role as a parent is not honored.    

I could go into a lot more detail, but this is not the place to do that.  That is what friends or therapy or sisters are for, right?

This is the text I got a couple of days ago which broke my heart.

                                           

What I thought might be an overnight visit or just a couple of days is now indefinite.  I realized my daughter’s intentions when she returned to the house with two empty duffel bags provided by her birth mom. 

As I discussed things with Jack and Jill after my oldest daughter packed up more clothes and belongings and left the house, they tried to downplay things, with statements such as “It was bound to happen sometime.” And “It’s okay- she never spent as much time with us and would prefer being with her boyfriend, anyway.”  Were they trying to protect their own feelings or were they trying to comfort and console me in a way?

18 years old but with still a year left of high school and no drivers license or job is an awkward stage to try to leave home. I say leave home instead of “run away” because it’s not exactly the same thing. But it does bring up similar panic and concern in a parent’s heart.

I reminded my daughter that she’s still on our insurance, I still have to take her to dr’s appointments, and even though she’s 18 years old my husband and I are the only ones who can legally excuse her absences from school or check her out of school.

This year a young woman from my state ran away from home-twice- (fortunately she turned herself into a police station the first time) and some of the comments left online were so incredibly judgmental- such as “I wonder what’s going on in that home to make her run away twice!”  “It must be her parents fault”, etc.

If you’ve never had a child suffer from mental illness or trauma (and adoption is trauma since it’s born from loss) then please refrain from making any judgements.

I know that things could be much more worse.  Although my daughter’s birth mom has not yet attempted to communicate with me or respond to my texts, I am in daily contact with my daughter (at least via texting) and I know that she’s safe.  She expressed that she will still join us for family celebrations.  

But it hurts that she’s not home.  

Nobody will be bringing me a casserole or card expressing "I'm sorry for your loss", because the loss is not known to others.

Ambiguous Loss

 As a mental health therapist I’m familiar with Elisabeth Kubler Ross’s Stages of Grief.  I am also well aware that grieving is not a perfectly linear cycle of steps but that grief can manifest itself in many different ways and can jump all over the place. 

I have also learned, through personal and professional experiences, that some losses- like death- are somewhat easier to understand and process because they’re so final and so public.  When you lose someone to death, there is an immediate outpouring of sympathy.   Having lost both of my parents and both of my in-laws over the past three years- [four of them within three short months of each other]- my husband and I have been on the receiving end of that kind of support. People learn of the loss and express their condolences because they want to be of help.  But what happens when people are unaware of a loss or it’s not a typical “I’m sorry for your loss- here’s some flowers and a casserole” type of loss?

There is a different kind of loss- ambiguous loss (also known as disenfranchised grief) which is a little more complicated because it refers to not a physical loss of someone, but grieving someone who is still alive.  A couple of examples which relate specifically to adoption and foster care are: 

1) The tremendous loss and grief children in the foster care system can feel when being split up from their siblings or separated from their parents. 

2) An adopted person or birth parent (especially in closed adoptions) grieving the loss of their relationship and/or role in the life of their birth parent or child.  Even though the person is still alive, they may not be around or even acknowledged. 

3) Foster parents grieving the loss of their foster children after they leave the home and are either reunified with family or placed in a different placement.  In this case I have sometimes chided myself and felt like I don’t have the “right” to grieve because the child was never mine to begin with and I’m the one who signed up for it in the first place.  Nevertheless, thinking of those babies and children who have been a part of our home and who aren’t here anymore hurts deeply.

A few other examples of disenfranchised grief not related to fostering or adoption could be divorce, miscarriage, or grieving over someone with dementia or a traumatic brain injury.  I feel like I lost my mom more than once due to her Alzheimer’s the last couple of years of her life.  As hard as it was to lose her to death, I became so frustrated and angry and sad that I lost her even before her passing when she was living, on the occasions that I felt she was not the same person I had been raised by.  

One of the reasons I’m talking about ambiguous loss is because over the past couple of years I have felt some very real losses over how I expected my children to be contrasted with the reality of some of the challenges that they’ve had to face and will continue to face.  These challenges- like Jill’s autism- aren’t always known to others so it’s a type of loss of hidden sorrow that my husband and I keep to ourselves without others necessarily knowing.

I can tell you for certain one thing that makes these losses even more apparent- and that is when I compare my children to other people’s children who appear to have no struggles at all.  I think it was either Eleanor or Theodore Roosevelt who said” Comparison is the thief of joy.” And I 100% agree. 

For Jill’s 4^th grade year I was sure to give her teacher a head’s up of any concerns I had and she did pretty well academically, but struggled a bit emotionally and socially. Her attendance was good until about April when she started getting burnt out again- which seems to be a pattern over the past couple of years.   I also vividly remember an email I got from her teacher one day which was sent to me telling me how well Jill was able to pay attention and finish her work one particular day.  I literally breathed a sigh of relief when I received that email because it stood in sharp contrast to a couple other emails I’d received (and at least one phone call home from her teacher on one occasion and the vice principal on another occasion) when Jill had gotten in trouble.

Last school year (5^th grade) we decided to enroll Jill in a private charter school which had smaller class sizes and a teacher’s aide in every classroom.  We believed she would get some more individualized attention for her needs and she did really well (with the exception of a couple of incidents at the end of the year requiring emails home from the principal and vie principal!)  I was really proud of Jill for making the transition to a new school, new classroom, new teacher, new rules and new dress code0 but especially since she didn’t know anyone.  However, for this school year Jill decided she wanted to spend her last year of grade school at the local elementary where most of her friends are.  I can’t blame her. 

We were planning on Jill going back to her regular elementary school this fall, but we had some rough patches with her behavior during the summer (including, sadly, some incidents of self-harm) so in the past couple of weeks we had a change of plans.  We withdrew her from her local elementary school temporarily- where most of the other kids in our neighborhood would be going, and after researching some different options, we were able to get her into an Intensive Outpatient Day Treatment Program during the day which specializes in kids with autism.  We are extremely fortunate that our insurance will pick up the cost, the commute is less than twenty minutes and that they had an opening for Jill to  be admitted the exact same day that classes began in our school district. 

Jill has successfully completed her first week of her IOP program and is doing very well. We get a write up of her progress each day and all of he medication management is taken care of by the nurses and staff at the center while she is there rather than her psychiatrist.  This has advantages as she went through some medication changes during the summer (when her focus didn’t have to be as high due to school not being in session) from a stimulant ADHD medication to a non-stimulant medication because of some side effects.  Go figure, she ended up recently going back on her original stimulant medication because the benefits outweighed the side effects.

 Jill will be in her intensive outpatient program for 8-12 weeks depending on the progress she makes.  She only spends about a couple of hours a day on actual school work an the rest of the time doing various groups (The OT room is awesome!) for therapy.  She sees an individual therapist at least once a week and will have family therapy once a week- which is important.  I know as a therapist with my children and adolescent clients that you can’t just drop them off to a therapist with the attitude of “fix my kid” without having the support and education of involved parents and understanding how parenting styles and family dynamics affect child. 

Jill was a little worried about what she might tell other kids when she returns to her regular school about where she was during the first couple months of the schoolyear, but her therapist explained to her that she could just tell them “I was at a different school” which is not a lie as the school portion of the program is an actual accredited school who will provide her teachers and next school a transcript of the work she completed.  I do worry that she might not have all the cushy advantages of her current program at her regular school (plenty of breaks and snacks and not a batted eye when she plays with fidgets to regulate or chews on her chewelry), but I’ve also been told that a staff member or two of the IOP can meet with her regular school when she’s completed the program to give an update and suggest which accommodations or teaching methods work well for her, so her 504 can be fine-tuned.

Autism Level 1 Diagnosis

Three weeks.  That’s how long Jill lasted doing online school in our home (2 1/2 years ago) until she complained about missing her friends from school too much.  By the time she transferred back to her local elementary school (after Spring Break) there was just a couple of months left of the school year and with the aid of regular check-ins from the School Counselor and accommodations from her 504 Plan, Jill was able to push through to the end of her Third Grade year.

I was looking back at some emails I had written to her teachers and the school psychologist during that time and my memory was refreshed that although Jill was able to attend about 70% of her online classes with my supervision, she would have meltdowns whenever it was time to complete an assignment.  There was also increased aggression as evidenced by more than one hole kicked in her bedroom wall and a large picture frame in our kitchen with a corner of the glass frame missing  from when Jill threw something at it in frustration and it shattered.

2022/2023 was a tough year for Jill- and for me as her parent.  In addition to the transition of schools, she started meeting with a psychiatrist [rather than just her pediatrician] for med management when we realized she would most likely need more than just ADHD medication throughout her life.  She also switched therapists when the therapist she had been working with suggested that Jill could benefit from a “higher level of care.” 

For Jill’s 4^th grade year I was sure to give her teacher a head’s up of any concerns I had for Jill and she did pretty well academically, but struggled a bit emotionally and socially. Her attendance was good until about April when she started getting burnt out again- which seems to be a pattern over the past couple of years.   I also vividly remember an email I got from her teacher one day which was sent to me telling me how well Jill was able to pay attention and finish her work one particular day.  I literally breathed a sigh of relief when I received that email because it stood in sharp contrast to a couple other emails I’d received (and at least one phone call home from her teacher on one occasion and the vice principal on another occasion) when Jill had gotten in trouble.

Perhaps the hardest part of that year and the weeks she did online schooling in particular, is when the psychiatrist we took her to was under the impression that Jill’s symptoms of aggression, increased irritability, and mood swings could be pediatric bipolar disorder, which manifests much differently than adult bipolar.  Consequently, we were counseled to take our child off of her ADHD medication as stimulants could possibly make things worse for her- and she was put on an antipsychotic and a few other heavy duty medications.  It would have made things much easier if we could have been able to answer the psychiatrist’s question of “Any family history of bipolar disorder?” when all we know for certain is that substance use disorder is prevalent on both sides of her birth parent’s families. 

 I can’t remember how long it took (a month or two?) till we came to the conclusion that Jill’s new medications weren’t really doing anything- besides causing some weight gain- and we could tell she needed to be back on her stimulant medication so that she could actually focus during the day and keep regulated. 

Growing up (and even until much of my adulthood) I always figured that whatever doctors say is what you follow because they are the professionals and they are always right- right? So you can imagine the couarge it took for me to take Jill back to her psychiatrist and say, “I don’t think the medications are working- I’m not even fully convinced she has BPD- and we really want her to go back on her ADHD medication which helped her as she’s struggling to focus.”  I guess I was expecting the worst-case scenario of me being lectured or gaslighted, and then second-guessing myself, but the psychiatrist was actually calm about things and assured me that I know my child best and that sometimes the best doctors can do is offer up an educated “guess” for diagnosis and treatment- but there is always room for error.  I was relieved when Jill could go back on her ADHD meds and seemed somewhat “back to normal.”  If you’ve parented a neurodiverse child or one who struggles with depression or anxiety, you know that medication can be a Godsend!

In addition to finding a new psychiatrist who offered a second opinion of what might be going on with Jill (No diagnosis of pediatric bipolar, but the confirmation of lots of anxiety and ADHD) the psychologist who did Jill’s neuropsych evaluation (and who also became her new therapist and was consequently able to observe her more) eventually updated her neuropsych evaluation at the beginning of 2024 with the diagnosis of Autism Level 1- requiring supports.  The main advantage and purpose of having an updated diagnosis was so that Jill could have as many supports as possible in her schooling- in addition to applying for disability in the future, should she need to as an adult. 

The diagnosis of autism probably shouldn’t have come as a shock to me given Jill’s sensory processing issues (resistance to brushing her hair or being bothered by loud noises being the most common) and some slight noticeable differences when compared socially to her peers, but it did, in fact, come as a surprise and I would be lying if I didn’t describe it as an unsettling discovery.  I can sum up the last couple of years with these short sentences: I went through a grieving period when we received that diagnosis and had a lot of mixed emotions. I still do have mixed emotions, and I still experience a sense of “loss.” 

In my mind, I associate children with autism as rocking back and forth constantly, flapping their hands, and some not even talking at all.  That profile doesn’t fit my little girl.  And yet, I have known ever since she was about pre-school aged that Jill has always been a little extra sensitive about things and something was a bit different about her.  I just chalked it up to in utero drug exposure or of having a more sensitive disposition.  I have since learned that autism presents differently in females- largely in part to their ability to “mask” things so well- and that females are often diagnosed with ASD much later in life compared to their male counterparts. 

Sometimes, even now, I question her diagnosis and rationalize “But she can make eye contact and she has a sense of humor!” And then I’m reminded that although she can make friends and socialize, she would be content to be surrounded by animals (stuffed of real) rather than people and that interacting with a screen is much preferable to her than interacting with people.  And her bluntness- or lack of censorship- is probably the most embarrassing quality of autism as her parent.  I recently learned that she showed up to a church youth activity and when one of the leaders asked her how she was doing she replied, “I’m just here for the food.”  She wasn’t trying to be funny, but was just being brutally honest.

Over the past couple of years since Jill was diagnosed with autism, I have learned that autism truly is a spectrum and that there is variation from individual to individual.  I have learned more about the different levels of autism- Levels 1, 2, and 3-  and I also had a lot of strong feelings stirred up when RFK was appointed U.S. Secretary of Health and Human Services, given his background with supporting unfounded theories linking autism to vaccinations, but more importantly, the underlying message that anti-vaxxers seem to convey that it’s better to have a dead child than a child with autism.  Yikes.

In addition to sharing her new diagnosis with her teacher at school and the school counselor, Jill benefitted from going to occupational therapy to help with her sensory issues, which, in turn, helps with her emotional regulation.  We have two swinging chairs in our backyard- one hanging from a tree and one on our patio- and she loves to swing on those.  I admit that I would also feel a bit guilty taking Jill to her OT appointments when it was evident that some of the other children there had much more severe needs than she did.  I would just smile warmly at other parents when I would see a child stimming loudly and noticeably or occasionally running around the lobby with an occupational therapist chasing behind them before they escaped out the door.

Sharing Jill’s autism diagnosis with her teachers and pediatrician was easy enough, but for some reason I still struggle with deciding which family members or neighbors or members of our church congregation to tell.  I know logically that there’s nothing “wrong” with being on the spectrum, and yet I feel overprotective of my child and don’t want anyone to treat her differently or judge her.  It’s a learning process for sure.  For some reason I feel fine telling people “My child has ADHD” or struggles with anxiety, but there seems to be a stigma surrounding autism.  I’m still learning how to effectively parent my child and advocate for her needs, so please be patient before heaping any judgments upon me.

There are a few other things the past couple of years besides parenting one AuDHD child which have truly humbled and challenged me as a parent, including the discovery over the past couple of years that more than one of my children is on the spectrum (that’s something I’ll have to save for another post) and also learning that there is a large intersection between neurodiverse individuals and identifying as LGBTQ. 

A few other miscellaneous things I’ve learned over the past couple of years which I didn’t expect to have on my Parenting Bingo Card:

1)      *What AuDHD stands for (Autism and ADHD co-occuring)

2)      *The association of hypermobile POTS (postural orthostatic tachycardia syndrome), Ehlers-Danlos Syndrome, and neurodiversity

3)     *. The difference between furries and therians- Google it. Or not.Actual screenshot from something I Googled in November 2023:

4)      *The difference between a 504 and IEP (Jill doesn’t qualify for an IEP, but she does qualify for a 504).

5)      *The intersectionality of neurodivergence and being LGBTQ

I have found that, similar to having a child with autism, having an LGBTQ child definitely brings out the Mama Bear in me in terms of protecting and advocating for my child’s needs.  This is obviously a sensitive and personal topic worthy of a whole separate post or two.  Although such challenges can feel lonely and alienating at times, I am so grateful to have been able to find support and learn from other parents going through similar experiences.  Any good parent just wants their child to know that they are loved- no matter what.

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):