Welcome to Noemie’s CaringBridge Site
Sign In to Show Your SupportThis blog has become somewhat of a difficult thing for me to write. Where I usually enjoy writing and storytelling, Noemie's story has become a beyond-words, or a words-can't-do-justice situation. Quite frankly, over the years I tend to sugar-coat these journals, and these days I don't have much energy for that.
Noemie's medical situation appears stable. There's nothing really else to say that wouldn't require its own journal entry, which is not in my capacity right now. She still needs to have endoscopic biopsies and an endoscopic ultrasound done at some point (it was supposed to be done last May), but the rest of this journal entry will describe why that's not happening.
Noemie had a comprehensive neuropsychology and cognitive evaluation in October. It was done rather urgently, skipping all the wait lists thanks to a local psychologist who squeezed her in because Noemie is profoundly affected by anxiety and refusal of medical care.
After the October evaluation, Noemie was diagnosed with Autism, re-diagnosed with Anxiety (originally noted in 2018 alongside the ARFID diagnosis), and is incredibly intelligent (90-98th percentiles for many cognitive functions!!!). None of these three things is a shock to me or Dave. But I'm sad it took 8 years for someone to listen to us. I understand that the complicated and confusing medical situation has muddied the waters, but...but...
How dozens of providers can look at a baby who started refusing to be held and refusing to eat at six weeks old, even after medical diagnoses were in remission and/or treated, and not press for an autism eval sooner...I'm wordless. Imagine for a moment being a brand new mother to a tiny 8 pound brand new human, telling any professional who would pretend to listen "she screams if we try to hold her or feed her. She will only be held or fed if she's asleep." If you're a mother, imagine the heartbreak of not being able to cuddle and feed your baby. Imagine hearing "it's normal to have anxiety and worries as a new mother" or "it's just reflux, all babies have reflux". Gaslighting at its best. Now, imagine waiting 8 years for an answer and for validation. (As you can tell, the post-diagnosis honeymoon of "yay we have an answer and an explanation" has worn off and now I'm angry.)
Actually, I'm being too harsh here, so to give credit to Noemie's dozens of providers over the years, please keep reading. I've learned a lot in the last couple of months, and, besides the medical confusion, Noemie meets a stereotypical picture of super-intelligent, extroverted, female who "masks" her Autism when needed and frequently, thereby leading to delayed diagnosis. Noemie was a smiley, happy, chatty baby, so of course the refusal to be held and fed just had to be the medical stuff, right? I recently learned from an incredible book that many Autistics like Noemie don't declare themselves as Autistic (via behavior) until "social demands exceed limited capacities." Well, whaddya know...guess what public school has done? The normal stresses of public school have scrubbed off the shiny "it's just her medical conditions" veneer and we've been left with a child who has slowly been falling apart since halfway through Kindergarten. If you absolutely must know what I mean by that, if you just have to know details of what that's meant for our family, call me because if I wrote it in this blog, you wouldn't believe me or would tell me what I've heard a few times now "It'll get better...she'll grow out of it...it's normal...etc".
Here is a small part of Noemie's Autism profile, not including the standard required-for-diagnosis Autistic traits and many aspects about her that I've never discussed in this blog's entries:
About PDA: Every demand in life causes Noemie anxiety, panic, and stress. This is far beyond ordinary demands of life. Demands that cause her to anxiety or panic include ALL demands: requests from others ("it's time to get ready for school"), self-imposed demands (eating, hygiene), indirect demands (praise from others leads to internal expectations of the future), internal demands (hunger, thirst), and the craziest one of all for us but the one that was the most obvious red flag is ... "good" demands that would lead to something that benefits her or are enjoyable. Examples of good demands are: panic when we tell her that we get to go do a fun activity (this is a demand that routine be changed), she frequently refuses to use medicine that would make her feel better even if it's handed over by a nurse or doctor (this is a demand that implies that she's not in control of her body), she refuses to use numbing cream on her arm for blood draws, she refuses to use self-care techniques for anxiety taught to her by professionals, and the example that's controlled our lives for 8+ years is ... feeding, food, and eating (hunger is a demand). Noemie has been unresponsive to therapies such as multidisciplinary team therapy, peer group therapy, Cognitive Behavioral Therapy and play therapy. She also did not respond to the 10 weeks of Incredible Years parenting coaching classes that I took last fall. (She briefly responded positively, and the stress level in our house continues to be much lower, but overall it was unsuccessful. It was actually the psychologist that ran the IY program that got us urgent help with the evaluation psychologist). All of these "unresponsive to traditional therapies and interventions" plus anxiety/panic from "good" demands are big red flags for PDA. PDAers generally don't respond well to traditional Autism interventions, so we've been guided to skip the ABA therapy that's usually recommended for Autistics. We're starting Relationship Development Intervention (RDI) therapy on February 7th.
I've written the word "refused" a lot in the above paragraph about PDA, but that is actually incorrect. People with PDA can't, not won't. It's neurobiology/neurophysiology and has something to do with a part of the brain called the Insula. That's what smart people with PhDs after their names say.
The Western medical model of care still considers Autism to be a pathology, a disability, and a disorder. That's fine, whatever. I don't really care, because right now we need this diagnosis to open up doors for care, to undo 8 years of damage-done. (I looked up "Autism" in a book's index and it said "See also: disabilities" and I blinked a few times, absorbed that connection for a moment and then moved on.) We are beginning to plant the seeds for "Autism is a superpower" for Noemie, but first we're tending to other more pressing issues:
Final thoughts:
"I gave birth to [a] round peg. [She] never fit the milestones in the baby books or matched the infants and toddlers I saw in my friends' growing families. I had [a] square peg in a round hold world. Square pegs can only fit into round holes if they shave off most of who they are. It's impossible to get the shape exactly right. And it is also impossible to hide the scars." - Amanda Diekman, author of Low-Demand Parenting
6 Hearts • 3 Comments