I used to blog, ages ago. I went through several phases with a blog. You could even say that I grew up through blogging. I was a young, new mother, married for the first time, also young….. Felt like no one really understood or “got” me, fancied myself a wordsmith of sorts. It was a thing that I did. Like when I took up sewing and monogramming for a few years, or that summer I was a henna artist, and the few times I was a face-painter…. That time I took up photography for a bit. It was a thing that I did and it got me through. I saved a lot of it to a hard drive before deleting it from the blogosphere, and looking back on it is a bit like looking through old diaries from my teenage years. *Oy* Did I mention I was young??? I did, however, make several friends through blogging that turned out to be lifelong lovelies, and that at least is something I will never regret.
The lasting lovelies and I stay connected via Facebook these days, believe it or not. We watch each other’s children shoot up like weeds in the summertime, mourn the passing of each other’s loved ones, email each other in groups or one-on-one to discuss deeper matters not up for public opinion. Still, on nights like tonight, when the wheels won’t stop turning, when I’m moved to go on and on for pages about things that are niggling at me, I really miss blogging. It was a diary, really, they all are, but it allowed people to weigh in and to share in your story. My story has felt rather lonely sometimes in the last few years. Maybe, ultimately, that’s what has me sitting in this chair, typing furiously at the keyboard. I have kept silent about a lot of things, told only those who are VERY near and dear, and kept only surface worthy things on the surface.
Sheesh, two paragraphs in, and I still can’t even really think of how to start this off. Perhaps as much as I think I’m ready to share this with anyone with net access, I’m not really…. but here it goes anyhow. This is the story of the last 6 years, of which we’ll skip a good deal or at least, sum up. This is the story of my youngest daughter. I’m not saying the blog, should it continue past this late-night-written mini novella, will continue to be solely about her, but this post, for certain is.
(When I hit *enter* just then, my word processor skipped over to a fresh page… that’s a good sign.)
This is my youngest daughter for those few strangers who might wander here. She’s always been a gorgeous baby with her orange hair and dark blue eyes. She was a temperamental toddler, as toddlers often are. It was somewhere around the age of 4 that we started to notice she wasn’t quite grown out of her toddler particulars such as tantrums over the color of her plate or the way you cut her toast. And she wasn’t a huge fan of other people; she would run to the end of the hall and hide her face from visitors. We chalked a lot of it up to her Cajun/Irish roots (hello temper!), others assured us it was just because she was the baby. You get the general idea, we shrugged it off, no big deal.
When she started Pre-K, we started to hear and see other things. She began refusing all but certain foods down to which brand or color of foods she would eat. Such as only the “red” Doritos, only cheese pizza from the brown box, even though she’d eat pepperoni on its own, only peanut butter and jelly sandwiches. She began refusing to wear certain clothes. Anything with buttons, grommets or metal pieces “hurt,” lace was too itchy, no socks at all thank you very much, and very particular about shoes. At home, she would strip down to her undies and refuse to wear anything at all except a “soft blanket” even in the winter. She began to form attachments to particular stuffed animal “friends” who had to go everywhere with us.
From her teachers, we heard that she didn’t really like to play with the other children. She wouldn’t play on the playground or in centers with other kids, she wouldn’t play outside even on her own and instead would only sit on a bench by herself. Well, we said, she’s never been anywhere without her older siblings or her grandmother or one of us, so she’s probably just needing some time to adjust. She began Pre-K in August and didn’t claim a friend or remember another child’s name until March. In the meantime, we were also requested to have her hearing checked by her teacher multiple times, who then brought her concerns to my mother that surely this child could not be that effective at ignoring her. There was also an occasion where I was called to pick her up early because she had had a tantrum over being itchy and was unable to be calmed until she was in the principle’s office waiting for me to come get her. Her ears were fine, there was no rash or anything to cause itchiness. She was fine.
In Kindergarten she was often put on negative behavior “colors” for not paying attention, not focusing in class, playing with her fingers, playing with her hair, playing with her face, playing with her pencil, not following directions, not finishing her work. She became obsessed with her color for the day and would wake me at 2 am to ask whether I thought she’d be able to be on a “good” color that day. She didn’t seem greatly upset so much as just flatly curious. As her older sister is ADHD, we thought maybe that was all there was to it and had an evaluation done.
“Not ADHD,” said the pediatrician. “Seems like maybe something else,” and so we were referred to a behavior therapist. By this time we were halfway through the school year and there were meetings with the school counselor and her teacher and then therapy to try and get things going more smoothly. She continued to get in trouble for consistently being the last to finish her work, she was compulsively erasing and starting over on her favorite part- the drawing bits. We tried a new behavior/point system. It worked for a bit and then didn’t so much anymore as she lost interest. We implemented awards at home for making her points at school, which also helped most days. She was not struggling academically, but still unable to focus. She would become distracted by playing with her own hair. She’d act up and make goggles or pull faces at the teacher during circle time. A great study of human expression and behavior, if the teacher so much as quirked a half-smile, it was, in my daughter’s mind the go-ahead to continue the silly behavior.
She continued to refuse socks, jeans, or any rough materials. She wore leggings every day. She screamed and cried when we brushed her hair and fought against wearing it up. She switched to only ham and mayo sandwiches and blue Doritos, and NO pizza at all, also no American cheese, or as she termed it- the wiggly kind. She wanted a round waffle for breakfast but would eat the center out in a perfect square leaving the “round corners” because she didn’t like them. She resisted changes, even those as small as a new pair of shoes or a food she liked prepared in a different way. No square waffles then.
After a few months of therapy, it was suggested that she was ADHD as well as OCD and possibly ODD. I brought up Sensory Processing Disorder and went over (AGAIN, probably for the 5th or 6th time) all of her issues with loud sounds (no auto-flushing toilets or hand dryers, scared of loud, sudden noises, overwhelmed by textures in food and clothing, strong smells, etc). Her therapist conceded that may be an issue, but more or less chalked it up to the OCD making her extra sensitive to such things.
I talked to friends and family members. Some wondered with me, others assured me I was over-reacting. Enter one of my long-lasting lovely bloggy friends who asked me whether I’d considered something like Aspergers. A work colleague had just asked me the same thing that same week so I started to research. LLL bloggy friend sent me a link to a Scientific America article about girls on the spectrum. I thought, well, it doesn’t hurt to ask so I brought it up at the next therapy session. I was met with a baffled expression and a reluctant agreement to let me fill out a prescreen form. I think it’s important to understand that I under-estimated on all scores while filling it out. I really sat and thought about each question and the severity to which it affected us and then I’d pick maybe one point lower on the scale unless it was a glaringly obvious deterrent to her day. She scored in the probable. Her therapist said, “Any other child who scored here, I would refer on for further testing, but I really think her OCD skewed these results.” I opted to see the specialist anyhow.
The only open appointment was in December. We were in May. She would be half way through the First Grade before we’d even see the specialist. And so we waited.
We continued to see the local BT bi-weekly. We decided to try medicine. We began with a non-stimulant that helped slightly, or at the least seemed to allow the therapist to actually get her participating in therapy sessions with fewer tantrums and outbursts, and better able to focus on the tasks set before her. With the start of the school year came an unexpected wave of anxiety. She would cry every morning, complaining of stomach aches, beg not to go, throw fits and scream she hated school, and then eventually give in about half way down the hall and then according to her teacher be just fine the rest of the day.
For the first half of the school year, we occasionally got reports that she was doing just great and making improvements. But then we’d learn that she often covered her ears during spelling words or any time the class was spelling/saying things out loud as a whole. Her grades dropped some second semester, but again we were told not to worry, she was still a great student, and it was only a C. She hadn’t made any friends and continued to spend most of her time, happily, on her own. There were a few incidents with swearing. There were a few incidents with her telling another child bluntly that she didn’t want to play with them, and unknowingly hurting feelings. She’d often say that “so-and-so” was definitely her friend because “so-and-so” loved her hair, but whenever we’d see “so-and-so” in the hall they would turn their nose up at her and run off, to which my beautiful orange-haired girl would turn to me and smile and say, “SEE?!”
We finally got to see the specialist and we went several times. In the end, after it all, we were given an hour long report on everything they had observed, thought, etc. This brings us more or less up to date.
She is currently diagnosed as being ADHD combined type, she scored 99.9% likely that she has attention deficits and hyperactivity. She is OCD as well as mildly ODD. She has Sensory Processing Disorder. She is behind about 2 years in her social-emotional development and behaves/responds more typical to a preschooler than a 6-year-old. She doesn’t understand idioms, figures of speech struggles to understand basic social stories and other aspects of abstract thinking. She has “several autistic tendencies.” All of that and a “I can see why you’d ask about Asperger’s, but we don’t diagnose that until age 8, due to development that goes on that time, so if in the next two years she doesn’t start to catch up to her peers…. well you’ll really begin to notice and we’d like you to bring her back for testing for Asperger’s Syndrome at that time.”
See, in the movies and on television, they like to let you think that every case is severe, or clear or direct, open and shut, there’s no denying what we’re seeing here. But, in real life, all you ever hear is that “it’s a process,” and that’s still very vague. It’s a LONG process. It’s a tedious, frustrating, infuriating, crappy process. While I certainly understand the over-diagnosis age we live in, and that you want to be sure…… you just have no idea how adrift and lost you can feel with all the maybes floating around you. You don’t realize how much it’s going to suck. How angry you’ll be. How sad. How confused. How unsure. You don’t realize HOW LONG you’ll go on feeling that way for turns at a time. You don’t realize how many nights you’ll spend questioning whether or not it could really be just you. Are you a hover mother? Are you over-reaching? Over-reacting? Is this the right thing? The right path? Should we see another therapist? Are we really going to medicate our child? Did I really sit through ANOTHER school meeting and cry and embarrass myself and STILL not really get heard? Did they hear me? Are they brushing me off? Did they read Dr. So-and-So’s report? Did I advocate enough? Did I fight hard enough? NO ONE tells you that the process SUCKS. No one says how long it will be, how long you’ll go without answers.
And…so…then, when do you tell people? When do you let people in on the process? I feel like I keep waiting and waiting for the sure thing, for some magical therapist to descend from the sky and say, “Hey, Mama, you’re instincts are right, you were right. This is what you’re looking at, here.” And while we’re fantasizing here, I’d like them to also say, “And here is a clear and concise plan of action!”
Can you really be a part of the community of other families dealing with all this bullcrap if you don’t have a definitive diagnosis? I arrived, tonight, at a point where I just don’t care anymore. This sucks. I read a post about girls on the spectrum and every single bullet point applies to my girl. Girls on the spectrum are different. They are misunderstood, misdiagnosed. Most of our local therapists haven’t even read the article I read on Scientific America. I know because I brought a copy with me, highlighted with all the things that apply to my daughter. Asperger’s and Autism are still widely considered to be “boy” syndromes, with girls only meeting criteria if they are severely deficient in academics or social skills (such as failing or being nonverbal).
Having a girl going through “The Process” means that you will frequently be met with skepticism and disbelief. You’ll have people try to reassure you that they don’t see it. You’ll hear that you’re an over-indulgent parent. That your child is just spoiled, just a brat, just needs a spanking, just the “baby of the family.” just a quirky funny child. You should just force her to eat or have nothing, she’ll get hungry enough to eat whatever you cook, just wait and see. You’ll be the mom getting dirty looks when your child has a meltdown in a museum because someone keeps pressing the button that plays the jet plane noise and train noises and it’s loud and weird, or the mom getting dirty looks in the waiting room because you noticed your child was on the verge of a meltdown and you told her that she had the green-light to say to the other child that she didn’t want to play hide and seek, or that she doesn’t have to let the other children at the playground play with Heart Kitty (a dirty, tiny stuffed pink cat with lopsided eyes that she’s been carrying around everywhere since age 3). You’ll be the mom with the kid who won’t stop complaining, crying, and begging to go to Burger King because “this restaurant smells like old fish!!!” while everyone else was looking forward to seafood. You’ll realize it’s possible to take your kid to the wrong colored sand at the beach. You’ll get upset at family functions because relatives call your daughter a spoiled brat when she frustratingly yells that the mashed potatoes are WEIRD! and LUMPY! and ISN’T HUNGRY! You will have to explain over and over again to well-meaning friends and family that continuing “the process” and therapy where they will learn to recognize, manage, and cope with several of these disorders doesn’t mean that they will just magically “grow out of it” one day. It’s an ongoing struggle to retain your composure and not throw a fit, worthy of your SPD kid trying on jeans, whenever someone dismisses your concerns or tells you that they don’t see it. So to all of you mommas, papas, grandmas, guardians, who are going through “the process” with your girl, or with your boy, you’re not alone. You’re not alone with the maybes. You’re not alone with the “am I’s?????” You’re not alone. Keep fighting. You know your child, better than any person in the world because chances are you’re one of the precious few people with whom your child is comfortable enough to be their true selves. Keep pushing, keep fighting. Keep embarrassing yourself at parent/teacher conferences. Keep researching, and if you haven’t started yet, as I hadn’t really until tonight…. reach out. There’s a community of us, I just know it. I know we’re out there and we don’t know what to call ourselves and we don’t know where we are on this journey, yet, but we exist and we need each other.