When we last left off in our "Journey to DX" series, we established that you were going to accept in your head what you knew in your gut: Something's wrong with your child. Then, you were going to talk with your pediatrician and/or contact your local early intervention services office to get the ball rolling on some screening and/or assessment.
So, now you're waiting. And waiting. And waiting some more.
What to do in the meantime?
Begin collecting data. Tons of data. Like your life depends on it. "How?" and "why?," you're likely asking.
Why should I collect data?
Let's tackle "why?" first. Data is going to establish that you aren't crazy. It's going to give credibility to that gut instinct that you have about your child. If you're on a trip to China, you're going to have a LOT better chance of finding the nearest whatever-you're-looking-for if you now how to ask after it in Chinese. Same principle here. You want help with that crazy kid of yours. Docs speak in data. Throw them a bone.
It's easy to feel/think/say that your kid "always" does X behavior or "never" engages in Y behavior. The docs are going to need you to back those up with cold, hard data so that they know how to help you and your child. How often is "always?" What does "always" look like? By "never," do you mean absolutely never or very rarely? I think you're beginning to get my drift.
Moreover, that doc is going to spend mere minutes or hours with you and your child. You, God help you or bless you, are with that kid every single, solitary minute of every day (and, if you aren't, drag their care provider into the data collection, too). You KNOW this kid. Your data is going to get you a jump start on getting to where you really want to be...knowing what's wrong with your kid.
Many folks wait for weeks or months for that initial eval. They finally get to that long-awaited appointment, only to spend 20-60 minutes with the doc or professional. THEN, the parent promptly leaves, irritated as all hell that the doc or professional said, "Come back next time with data." Save yourself the aggravation, my friend. You have enough of that in your life.
There's another reason why you should start keeping data logs. You, as that lovely child's parent, are perceived as hopelessly subjective. Appropriately so, I figure, because you love that kid more than anyone else in the world loves him/her. Love is blind, remember? Unblind that love by using data. Data helps you take yourself, your perceptions, and your needs/fears/wants out of the equation. After all, this really isn't about you at all. It's just filtered through you and left to you to do the hard work...there's a big difference there, my friend.
How do I collect data?
So, we've established WHY you need to take/gather data. Nice. So how the hell are you supposed to do that on topic dealing with everything else you're juggling as a parent, a worker, a spouse, a daughter or son, a friend, a house manager, etc?
Unfortunately, you're just going to have to suck it up. You're going to have to do it because it's vitally important to your kid's treatment, eventual diagnosis, and participation in this life. You're going to have to leave your toilets dirty, turn an assignment in late, pass up an amazing opportunity, or bail on a coffee date with a friend. You should be starting to figure out by now, I hope, that you're going to miss out on and give up a LOT of things that folks with typical children otherwise enjoy, not the least of which are sanity, sleep, and an arguably clean home or appearance. It's alright. Never you mind about that, my friend. It's really, REALLY going to be worth it in the end.
You've decided to make time. Great. Now, what? Well, there's really no right or wrong way to do this; the world is a grey place, my friend...absolutes are for folks who have ASD. I'd imagine that you can Google "data collection forms for ASD," and there's probably something tailor-made out there. Go for it. Or, use your iPad or a pencil and paper (you remember those). It doesn't really matter. Just get started, for goodness sake.
Pick a couple of behaviors and track how frequent and intense they are. I remember picking two things that bothered me the most and starting with them. For a few days, I wrote down EVERYTHING she did or said in those two categories. Made myself just about crazy. I was frantically scribbling in that notebook (I'm the old-fashioned type) all day long while trying to deal with 4A's constant tantrumming and perseveration and 4B's incessant newborn needs. Something had to give. Not one to give up breathing without a fight, I switched to tally marks.
So, every time 4A started into a bout of repetition ("I take it, I take it, I take it," over and over and over and OVER every time, EVERY time, she wanted to give me something) or a tantrum, I put a tally mark down (and, for awhile, I did tally marks for every repetition...she said that particular phrase ONE HUNDRED AND THIRTY SIX TIMES in one episode one day). That was a LOT of tallying, my friend. I started a fresh page for each day and divided it by morning, afternoon, and evening.
You do it how you like. Your method and the behaviors on which you collect data will reflect you and your child. The point is to do it. You should have some literal, written descriptions of what your kid does or says and you should be tracking frequency and, possibly, intensity.
Frequency is easy. Intensity is a bit harder. Dr. Steve once had me rate a behavior's intensity on a scale of 1 to 10. That turned out to be too ambiguous for me, so I used a plus, a minus, or a zero. Use an ABC or 123 method (and, perhaps sing a little Jackson 5 diddy while you do it, just to make it more fun). Who cares? Just start.
You also want to write down some stuff about YOU. When the behavior happens, what were you doing before it started? How did you handle it? What was the result? So, to give you an example, when 4A started on a screaming tear, I would describe the triggering event (she flipped her shit because we didn't get the IDENTICAL cart at the grocery store that we had last time; oh yes, she had them memorized), what I said and/or did ("I'm sorry. This is the one they have today. We'll have to make do."; put her in, strapped her down, and hauled ass through the store while ignoring her incessant screaming about the damn cart and the stares from all the other shoppers for the FIFTEEN minutes we were in the store, seething and pissed off), how long it lasted (I used the stopwatch function on my cell phone; oh, and they never really "stopped," they just morphed into another one), how intense it was (plus, zero, or minus), and how/when it ended. I gave several of these written examples to accompany my tally marks.
Any info you can provide about routines, caretakers, schedules, ANYTHING will help. It all helps. And, it keeps you busy.
Here are a few examples of what I did. REMEMBER, please, that yours will look different. There is no one right way to do this, and I am NOT an expert or a specialist or a doctor. I'm just a mom, sharing with you how I kept myself sane.
This first one is 3 pages, and this is what I walked in the door with at our first appointment with our beloved Dr. Steve. I told you we were desperate!
This is some data that I subsequently collected for Dr. Steve.
I also VERY strongly recommend video. SHOW the doc what that behavior really looks like. SHOW her what you are actually doing when the behavior occurs. SHOW her that you are serious. Video is objective. Your feelings, insecurities, irritations aren't included in the video in the same way that they would be in a description. If I showed you a video of that trip to the store (or any of the other hundreds just like it), you would just see that. You wouldn't have my sarcastic tone, irritation at the behavior, and insecurities about my parental prowess with it. The more objective you can make this, the better off you're going to be. Read between the lines here...the more data you collect, the quicker you'll get to where you want to be, the more accurate the help or diagnosis will be, and the more support you're going to get.
Worry about changing your method or what you're tracking later. The doc will give you direction. But, for now, just start collecting. It's going to put you one step closer to what you REALLY want (help, a DX, whatever), AND it's going to make you feel like you're being proactive. That, for me, was a lifesaver.