Now that deafness/hearing impairment was ruled out, it left three possibilities. A) Nate was developmentally delayed, b) Nate was autistic or c) Nate was fine. To determine which was the case, Nate took tests. Lots and lots of tests. Every test had an acronym and every test giver had one, too. Let me say here that acronyms need to go away. They make this process scarier, more convoluted, and are exhausting. During testing, our minds were already reeling with the possibility of autism but they really started to teeter when we had to keep up with all of the abbreviations for the tests. (Pens and pencils up, kiddos. Here comes the list.)
On December 15, two women, a RPT (Registered Physical Therapist) and a Developmental Therapist, in our home. They conducted the M-CHAT (Modified Checklist for Autism in Toddlers) and the Battelle Developmental Inventory II tests, which tested Nate’s communication, gross and fine motor skills, adaptive skills, cognitive skills, and personal social skills. Chad stayed home for this exam. One therapist came with a big toolkit of toys. Nate instantly liked her. The other lady came on crutches, which she had decorated for the holidays with sparkly, glittery garland. Nate instantly liked her, too. (Well, he liked her crutches.) And then the test began. I can’t really remember all the details of this test (it’s kind of a blur) but I do remember that a) they asked Chad and I lots and lots of questions about how Nate performs and behaves in a variety of scenarios and b) Nate got dinged on two skills that he actually can do.
One exercise measured Nate’s pincer grasp, a developmental milestone where tots use their thumb and pointer finger to pick up small items. Nate rocks at this. He’s been doing it since he was nine months old. For some reason, on the morning of the test, he didn’t feel like demonstrating the pincer grasp. Instead, he was using all five fingers to pick things up. Because the test administrators didn’t see Nate exhibit the pincer grasp, they couldn’t give him credit for it. We protested. They said they’d put a note in the report that said we vouched for Nate but, still, couldn’t say that he exhibited this skill. Another exercise asked Nate to put rings on a stick—you know, those wooden rings where each one is a different color. This was also a task that Nate did well. Again, he just decided to not show the ladies this skill, which, again, meant he wouldn’t get credit.
In our esteemed opinion, another test set our son up for failure. This was the Cheerio test. Nate was given a small, empty water bottle and a Cheerio. He was asked to put the Cheerio inside of the water bottle. Nate looked at the ladies, looked at the Cheerio, looked at the ladies and said, “Are you crazy? This is a snack!” and proceeded to eat his test. Another Cheerio was procured with the same request. Nate ate the second Cheerio. A third. Gobbled down in record time.
Finally, one of the test administrators put the Cheerio in the bottle for Nate. (Then she quickly scribbled on her paper that Nate bombed that part of the test.) She then asked Nate to tip the bottle over and take the Cheerio out. Being the creative boy that he is, Nate began to shake the bottle and make the lone Cheerio rattle all around. He did a little jig. He rocked it out. This, too, apparently is not the desired outcome. Instead, they hoped that a) Nate would follow instructions and b) would “problem solve” to get the Cheerio out. Oops.
After all was said and done, the ladies (literally) tabulated Nate’s scores. They quickly proclaimed that Nate was eligible for the State program. We asked if the result would be different if Nate performed appropriately on the pincer grasp and ring stacking tests. They told us that it wouldn’t really make a difference but they would note on the exam that we said Nate could do those skills. We got the written score sheet about a week later. Nate was “age appropriate” for his adaptive and gross motor skills (Way to go, buddy boy!!!) but had ten areas of “concern,” six of which were “critical.” So the possibilities were now narrowed down to either a) Nate is developmentally delayed or b) Nate is autistic.
We were told the next step would be creating an IFSP (Individualized Service Family Plan) with the therapy group we were assigned to. We were told that we’d hear from them in two weeks to set up the IFSP appointment as well as to schedule the test for autism. Two weeks? That didn’t sit well with us at all. At a loss for who to call, I called the State program. It turns out that two weeks didn’t sit well with them, either. So they called our therapy practice and wa-bam! The head of the therapy practice called me that afternoon! She explained that, in their experience, families who just learned their child qualifies for some sort of therapy need about two weeks to digest it all. While some might need it, we weren’t willing to waste a moment of aid for Nate by sitting around saying “Woe is me” for ourselves. This diagnosis has nothing to do with us and everything to do with our sweet boy. Get a move on it, people!
Because we were willing to do the autism test (apparently some parents aren’t), our therapy practice put the IFSP on hold since it would dramatically change if autism was the diagnosis. For example, if Nate was developmentally delayed, he would receive 5 to 10 hours of therapy a month. If he was autistic, he’d receive 10 to 15 hours of therapy a week. We quickly scheduled the ADOS (Autism Diagnostic Observation Schedule) test. The first part of the ADOS test was the Vineland Adaptive Behavior Scales (Second Edition), to be administered in our home by a LCSW (Licensed Clinical Social Worker). The second half of the assessment was to be administered in a “neutral” environment at the therapy practice. The paperwork we received explained that Vineland measured how Nate “performs in a variety of situations that cannot be observed during the ADOS assessment.” (At this point, I was ready to set any acronym I saw on fire.) Vineland was a continued parental interview and also included the Social Worker’s observation of Nate playing. Because Chad works outside of the home, I did this one on my own. The Vineland was another 1 ½ hour interview about what Nate can and cannot do. The test administrator also observed Nate but did not interact with him or ask him to complete any tasks.
Again, I felt like I said “no” way too many times in response to the questions. This time, however, two new things irked me. First, the administrator asked if Nate could climb stairs. Mind you, at this point, Nate had been walking by himself for about three weeks. However, stairs were one of his favorite things as soon as he could crawl. Even while crawling, he’d slap a little palm on a step, wind up his leg, and slap his little sole on the same step. Then he’d push up to get the rest of himself up there and repeat. Up and up and up he went. (Of course, Mom and/or Dad right behind him in case he slipped. See? That’s my husband. Handsome, right?) I mentioned Nate’s unique crawl up the stairs. The test administrator said, “No. Can he walk up the stairs? You know, use the railing and walk upright?” Seriously? He’s too short to reach the railing. And he’s not short for his age. In fact, everyone comments how tall he is. But he got dinged for not being able to reach our railing. Stinky.
Second, at the end of the appointment, the test administrator began to talk casually about this and that and the other thing. For some reason, she felt it was necessary to note that Nate didn’t warm up to her. She found it odd that he didn’t come over and give her a hug or show her affection. Because most kids she meets does. She said she’s the “grandma” type. Most kids hug her. Nate didn’t. She found that odd.
Here’s where I got prickly. I bit my tongue, thankfully, but I was still prickly. My son, autistic or not, doesn’t do well with strangers. Autism makes eye contact difficult and toddlerhood makes stranger danger be on high alert. He’d only known this woman for an hour and a half, she didn’t bring a fun bag of toys or decorated crutches for him to play with, and she didn’t attempt to warm up to him. So, yeah, I wouldn’t expect him to give her a hug. I wouldn’t expect him to really give her the time of day (which is pretty much what happened). But I became concerned that, suddenly, this would become another ding on his report.
I shoved it aside and we showed the woman the door. We had the big ADOS test the next day, so Nate deserved some fun. We settled in to watch Curious George and eat snacks. Curious George. He’s a good egg. He doesn’t ask questions of me (he’s nonverbal). And, best of all, he makes Nate laugh until milk comes out of his nose.
Coming soon — Part Three (aka We Could Have Studied for This)