Hurry Up and Wait (part 2 of our journey with Asperger’s)
I find it only slightly ironic that I’m revisiting this chunk of time now…at the beginning of the holiday season…2 years later. If you’d like to catch up on this story, click here.
So, a quick recap. I’m beginning my DREAM job right when we’ve been told that there may be some “red flags” with Z, our almost 2.5 year old son. And both kids (S is barely 1 years old) are going through a culture shock of spending all day with Mommy to spending all day at a daycare center. I told Z’s new teachers and the center directors about the previous teacher’s concerns. I shared her report with them and told them I still wasn’t convinced there was anything wrong (denial is a powerful thing). But, would they please keep me up to speed on any challenges they have with him or if they saw anything of concern. We agreed to give him a few weeks to settle in before moving forward with any evaluations.
Within 4 weeks, they came to me and said, Please, make an appointment. We need help. He’s acting out, refusing to listen to us, kicking, throwing chairs, throwing toys, running away when we try to talk to him and disrupting other kids. He even spit in his teacher’s face and was sent to the director’s office. My 2.5 year old…already being sent to the director’s office. One of his teachers put it best when she said, “Z’s like all little boys. They’re defiant, they break rules, they’re physical. He’s just amplified.”
OK, time for action.
We set up an in-school evaluation and filled out the first of MANY questionnaires/rating scales. At this point, J and I were doing them together (although that changed quickly given the sheer number we filled out), analyzing each question, discussing where we truly thought Z fell and being annoyed with the “gray” of all the scales: Does your son do X, Y, and Z: “Sometimes”, “Often”, “All of the Time”, “Almost Never”.
Given we didn’t think there was anything wrong with him just a few weeks ago, we weren’t even sure what exactly we were supposed to be concerned about, much less how insistent we needed to sound the alarm! No matter, once the ratings were scored there was enough of a concern that it was suggested we come in for a full evaluation with a speech therapist and a child psychologist. The problem was the first available date was in February–a 3-month wait.
That Thanksgiving, Z & J went to visit our family halfway across the country. I stayed home with S who was suffering a string of ear infections, no doubt brought on by her time in daycare. There were two huge takeaways from that week. First, I started reading Out-of-Sync Child and the similarities between the books’ descriptions of kids with sensory issues and Z’s behavior blew me away. I kept calling J to read a passage or marvel at how the author, Carol Stock Kranowitz, was describing our son.
The second takeaway was when S and I went to a friend’s house for Thanksgiving dinner. There were a ton of kids running around and S just hung out with them, played with them, watched them, did her thing. I hung out with the parents, chatting, having a glass of wine and keeping one eye on S. It was so easy. So relaxing. So different from the last time I was at this friend’s house when I had to hover over Z to make sure he didn’t climb, kick, break, eat, run away, etc etc. And, S didn’t have a meltdown when we left. We just left.
It was a huge eye-opener to me how difficult things had been with Z and we just thought it was the norm. I had no idea how tense I had come to be anytime I went anywhere with the kids. And, I had no idea how much I was not enjoying my kids until then. Don’t get me wrong, I loved them intensely. I just didn’t really like being around them that much. Z was Z. S needed more attention than she was getting because Z was so intense. And, she reacted strongly to the power struggles between Z and I, which made her cry. A lot.
So, here she was, ear infection and all being the sweetest little thing you could ask for.
On the flip side, J was having a helluva time with Z. Strange place, lots of people, strange climate. We know now it was just too much sensory overload for him. J couldn’t get him to go outside the entire first day. He refused to wear his jacket, gloves, snow pants, etc. And, this is a kid who NEEDS to run around and be physical. And he was inside. Grandma and Grandpa took one look at him and said “J, you’re too lenient with him. Make him put his jacket on and take him outside.” Good, no great advice for a typical kid. But terrible for a kid with sensory issues. Looking back, I marvel at how little any of us understood.
In mid-February, I flew home early from a business trip so I could participate in the much-awaited, much-anticipated screening. Not the best decision for my career, but I wasn’t willing to wait another minute to have Z evaluated and there was no way I’d miss it. We met with the team for 2-3 hours. They did multiple tests/ratings/games with Z, with us watching behind a 1-way mirror. They asked us a million questions and had us fill out more questionnaires.
We weren’t surprised when they told us, “Z’s complicated. He’s got some wonderful strengths but he’s also showing some concerning behaviors. As soon as we start thinking one thing, he’ll do something else that negates it. No wonder you guys have been struggling with him.” Finally! A professional telling us it wasn’t bad parenting (although, wow, do I wish it were that easy) but that we had a ‘complicated’ child.
What did surprise us was when they said the word Autism. And Asperger’s Syndrome.
Did you ever see Spanglish? Do you remember the scene when Tea Leoni admits to Adam Sandler she’s having an affair?
AS: Hold on. I’m missing what you’re saying. You can’t keep talking…and expect me to follow it when you start the way you did.
TL: Just what did you hear?
AS: There was a crack in the planet. That was noisy. There’s an actual noise in my head. No kidding.
That’s kind of how I felt.
On the car ride home, J kept saying, “I think that went well. I feel like we’re moving forward. I feel really good after that.” Well, J is definitely a glass half-full kind of guy. I, on the other hand, turned to him and said “What part of that did you think was good?!? NONE of this is good. They said AUTISM!!!!!!”
And so began 6 months of follow up evaluations and screenings. In total, Z had four in-school evaluations, seven in-center evaluations and one at-home evaluation. They just weren’t sure. The running theme was that he was complicated. Which, looking back, was a good thing. It meant he’s not slam-dunk: Autistic. It meant that his strengths are very strong and his challenges are mild in comparison to other kids on the spectrum. But, was it frustrating. I even had one phone conversation with the main therapist who told me, “I’m looking over all his evaluations and screenings and I just don’t see it. I don’t see autism.”
And so we waited. And tried to keep as much normalcy in our lives as we knew it. Little did we know how drastically that normalcy would be turned onto its head.
Stay tuned next month for more updates.
Guest blogger Rebecca lives in Denver where she spends her days wrangling two kids, a dog and a husband, working part time and enjoying Colorado as much as possible. She even manages to eek out some time to write in her blog, MBA Mommy where she talks about, you guessed it, wrangling 2 kids, a dog and a husband, working part-time and enjoying Colorado as much as possible! Photo