We didn’t actually just arrive here. We’ve been here the whole time, but our immediate family was the only group who knew it. Oh, there’ve been the few, wonderful/amazing/supportive therapists along the way who knew that we were here, and who bravely helped us find our way. The rest … not so much.
He’s four and a half. Well, almost five. And when he was two weeks old I was already staring at him wondering what was wrong. At two weeks old I was told it was the crazy-mommy-baby- hormones talking. At two months, still baby hormones. At one year, paranoia. At two years, low thyroid. At three years, still paranoia and Xanax might help. At three and a half, someone finally watched the videos and listened to me. At four he finally started receiving services. A lot of services. At four and a half I finally got a diagnosis that made sense.
It’s three nights after my one-on-one with the PhD. The one who came as close to understanding him as someone possibly could after two days in a locked room with my boy and his Legos, watching him stim, watching him run around the room in circles, try to escape the exam room through a window, giggle at the Play D’oh … and listening to him scream when they pulled me out of the room to fill out forms. There aren’t any more tests to run at this point. Every inventory, assessment, diagnostic schedule, observation pattern… they’ve all been run and I have a 4-inch binder where I keep them like some sort of golden trophy, hole punched and sorted and waiting for someone to try to tell me, once again, that it’s all in MY head.
Even now, after all this time, I don’t understand. Why would anyone, let alone a medical professional, tell a parent they were paranoid, overly worried or depressed instead of just sending the kid out for an eval? I look back and I can still see him, running around the exam room of our (former) pediatrician’s office, touching everything, climbing on everything, not making eye contact, not responding to questions. Just running in circles giggling. She looked me in the eye and said, “He’s perfectly fine. You’re worrying too much.”
The 4-inch Dx stack says differently, my dear indifferent Dr.
299.00 Autism Spectrum Disorder; Requiring very substantial support.
312.9 Unspecified Disruptive, Impulse-control and Conduct Disorder (R/O)
314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly hyperactive/impulsive presentation (R/O)
…Dyspraxia… Dysgraphia… Sensory Processing Disorder/Neurological Sensory Differences… Poor Muscle Tone… Abnormal Gait.. Receptive Language Disorder.. Expressive Language Disorder… Phonological Disorder… Articulation Disorder… Fine Motor Difficulties…. Normal Vision… Normal Hearing… Impaired Verbal IQ… Average Non-Verbal IQ…
I’ve been told
He also giggles and hugs and smiles and runs in circles and finds joy in everything from pattern walking to popping Legos on and off over and over and over and over…. So I don’t care what the diagnosis is. I only care about the help he’s going to get, the services and finally… after four and half long years… fewer people looking at me like I am out of my mind. Maybe. Maybe they will see him in his monkey halter, wearing footie pjs and giggling or, if we are at the grocery store, tantruming and screaming like he needs an exorcist, and think I need serious Mommy-intervention.
But the ones that matter, the OT’s and PT’s and SLP’s and Behavioral Therapists… they will look at the papers in their hands, usher us in the door. and we will start fighting as a group what I’ve been fighting on my own for a very long time.