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.