I’m a bit of a researcher. Okay, fine, I’m an obsessive researcher. I like skimming past the technical descriptions (you know, once I’ve got the gist) and read through people’s retellings of their experiences. After all, that’s the truly relevant stuff, right? You can categorize illnesses, tragedies, triumphs, successes any way you want to, but the lived experiences of the people who go through them are what really matters. That’s your day-to-day right there.
Throughout most of July and August, I went to bed with headphones in so I could quietly watch YouTube videos and listen to podcasts every night. The videos were nearly all of children of varying ages with autism, apraxia, dyspraxia, language delay, sensory disintegration, and other related disorders and diagnoses; the podcasts were overwhelmingly episodes of Laura Mize’s Teach Me To Talk. (Is Laura a mind-reader? I’d be wondering about a very specific topic and she’d have a show among her five years of continuous weekly shows that exactly and specifically covered it.)
Those videos, podcasts and even blog posts I found gave me so much.
Parent Perspectives. Oh, right, I’m not alone! Logical, of course, but it’s so important to feel like other people “get it.” That connection means a lot, even when it’s static and I’m just reading a blog post or article written by someone a few years ago who I’ll never end up talking to.
Anecdata. “Internet anecdata” gets such a bad rap. I understand that people’s memories and perspectives can vary, so sure, I won’t ask in a web forum what dosage of Tylenol to give my kid, but why not read about how other parents have handled issues that we’re currently navigating? Sure, what they tried might not work for us, but it’s worth a shot. It’s the difference between groping around in a dark room and having, at the very least, a dim flashlight.
Research. Published research is a great tool (as long as you know how to read it) and it can gain you some traction with medical professionals. There are some brilliant and dedicated doctors out there, and we’ve been lucky to come across many in our “travels,” but sometimes they can’t know everything all the time. Our pediatrician is not a nutritionist by trade; our developmental pediatrician is not a speech pathologist; our occupational therapists are not AAC specialists. It would be most excellent if we could get them all into a room together once a week to chat together and streamline their notes and observations (really, really, REALLY WONDERFUL) but that’s not the real world– maybe someday when I win the lottery. Until then, if you find yourself in the position of feeling like one thing is very important to you but isn’t holding much weight with your specialist-of-choice, a few peer-reviewed, research-based, valid pieces of documentation can really help you advocate for that thing that’s important to you that said specialist might be brushing off.
(Really don’t want to sound like I’m quietly venting here– we’ve had pretty good interactions with nearly all of the professionals we’ve been in contact with. Sometimes it helps, for my own sake, to have something printed out and in my purse, even if just to remind me that it’s okay to push a bit and insist on something important because I have back-up. If you’re a bit shy about being a squeaky wheel, this might help you, too.)
In terms of recording information rather than gathering, here’s a glimpse at our paperwork situation:
Early Intervention notes from each weekly EI session. I sometimes take notes on what I observe, but the bulk of these are copies of paperwork for any service plan changes plus the notes our program coordinator writes.
Evaluations from every professional we’ve seen since around a year ago when we first started pursuing Early Intervention. Some are full-length formal reports; others are short write-ups and letters.
Emails that I print out from the occupational therapists about the girls’ weekly sessions, plus some notes I’ve taken during their sessions.
Borrowed books from the speech pathologist (I love it– she wrote “DO NOT REMOVE FROM OFFICE” across the top of them, and I pointed it out when she handed them to me and she winked).
Giant binders from our ABA team, one per child, with all of their time sheets and data sheets and behavioral what-not and some notes between themselves. The data sheets are fascinating– exactly how many times out of 40 trials of “response to name” were independently successful, how many required a partial prompt, a full prompt, etc.
iPhone notes that I started recording when the girls were about 5-6 months old, for posterity. I stopped adding to these notes a few months ago when other people started recording more detailed information.
Health insurance info, including a bunch of forms we’re filling out to sign up for secondary insurance and the benefits packet for our primary insurance. I find myself needing to reference that pretty often…
Photos and videos of anything and everything the girls do. Some videos I record specifically to capture problematic moments or areas in which the girls need some support, and then I go back a month later to re-watch them and compare them to more recent videos. It’s really encouraging when I can see a big improvement in a skill or behavior.
A million PECS, scattered all over the house.
Ham’s new iPad! (More on this in a subsequent post!)
All of these things are, largely, crammed into or stuffed under a small pink basket in our dining room, which is, in terms of ABA, “where the magic happens.”
My advice for other parents who are starting the process of getting evaluations for their children?
Does anyone else have the same difficulty I do– people ask you a question about yourself and you can’t quite think of the exact right answer in the moment? Maybe not? Well, this happens to me a lot. If someone walked up to me right now and said “HEY JULES, what do you want for your birthday?” I’d be like “Uhhhh… uhhhh…” and literally start mentally scrolling through a list of things I know I like until I hit on something that seems like a good suggestion. That system is no good for me. BUT, if I’m just playing around window-shopping on Amazon like I do on any given Saturday night I can find a million things I want to put in my house. So I make a wish list, and then when someone wants to buy me a gift I can just send them a link.
Similarly, when I sit down for the five millionth time to fill out intake forms for another medical or developmental professional and they ask me “at what age did baby start rolling over, sitting independently, crawling, speaking French, weaving baskets” I start to go blank. The more often I fill out these forms, the more likely I am to forget, and there’s nothing more embarrassing than recording the same thing slightly differently in two places that are both seen by the same person. It gets doubly confusing when I have, well, double the forms to fill out, and I don’t always remember that Chicken started rolling over from back to front exactly two weeks before Ham did, and then a week after that Chicken started rolling from back to front, etc. I have a handy little list all typed up in my phone, and I can sit in a waiting room with the phone in one hand and that clipboard of papers with the attached pen in the other (if you’re counting, yes, that’s two hands, which means my children are probably unattended and tearing apart the five-month-old People Magazines).
Record everything, especially when it comes to videos. Take videos. Take SO MANY videos. You will see things and record them, and later you’ll watch them again and notice something else, and then a month later you’ll watch them again and wonder how you really missed that other thing that you’re seeing for the first time now. Subtle things can come out, like a child relying more on one side of their bodies or a specific strategy they use to solve a problem. It’s all gold.
Record everything. And then sigh with resignation because half of your dining room table is now an office and you’ll be eating dinner around it all for a while. Just save enough space for a bottle of wine and you’ll be okay.