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 4th 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.
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