After the last blog entry about the ADOS (Autism Diagnostic Observation Schedule) test, where we described our horror at not introducing Nate to elements of the exam—such as a baby doll, Play Doh, and fake birthday cake candles—prior to the test, we got a lot of great responses via Facebook. My favorites include: “So the state advocates giving toys to kids before the mandated age? Last I checked, I had to wait until each of my nieces and nephews were two to bestow the wonders of Play Doh on them. Of course your eighteen-month old hasn’t played with Play Doh—because you’re a good parent!” and “Is there a possibility that Nate was misdiagnosed?” Another dear friend wrote, “Who doesn’t want both a Teddy Graham and a Goldfish??” These comments made Chad and me giggle.
But here’s the real deal: the test had nothing to do with Play Doh. Or baby dolls. Or birthday cakes or bubbles or a bucket of toys that had handles. It also had nothing to do with which snack Nate chose. (If only he’d eaten that chocolate Teddy Graham…maybe then he’d be diagnosed as PPD-NOS or would just be fine!) The ADOS test elements (we didn’t describe all of them–just the ones that stuck out in our minds) measure Nate’s social and communication behaviors through five sections: Language and Communication, Reciprocal Social Interaction, Play, Stereotyped Behaviors and Restricted Interests, and Other Abnormal Behaviors. (Aren’t these great titles?)
This is how the sections were described to us in Nate’s ADOS test results. (Get ready to pull out your dictionary….)
Language and Communication: The language and communication section covers overall level of nonechoed language, frequency of vocalizations directed toward others, intonation of vocalizations and verbalizations, immediate echolalia, stereotyped/idiosyncratic use of words or phrases, use of other’s bodies to communicate, pointing, and gestures. (I don’t understand half the words in this description. And I have a Master’s degree. From Yale.)
Reciprocal Social Interaction: This covers unusual eye contact, responsive social smile, facial expressions directed at others, integration of gaze and other behaviors during social overtures, shared enjoyment in interaction, response to name, requesting, giving, showing, spontaneous initiation of joint attention, response to joint attention, and quality of social overtures. (I thought overtures belonged in musicals….but I digress….)
Play: The play section covers functional play with objects and imagination/creativity.
Stereotyped Behaviors and Restricted Interests: This section covers unusual sensory interests in play materials/person, hand and finger movements, complex mannerisms, self-injurious behaviors, and unusually repetitive interests or stereotyped behaviors.
Last but not least, the spectacular Other Abnormal Behavior: This section covers over-activity, tantrums, aggression, negative or disruptive behavior, and anxiety.
When you take off your Team Nate hat and put on your therapist hat, suddenly Nate’s reactions to babies and bubbles and cookies and such looks very, very different. For his sake, I’m not going to share the details of Nate’s report (though, needless to say, it clearly demonstrates that he’s autistic) but I will share one line that makes me laugh out loud. In the Stereotyped Behaviors and Restricted Interests section, his report began:
“Nathan demonstrated a definite interest in the nonfunctional elements of the play materials, testing environment, and himself.” (My emphasis…)
It has been duly noted that Nate is interested in himself and will be part of his medical records for all of eternity. However, had the test administrators gone on to note that Nate is wicked cute, I do feel it would explain the self-interest. (But again, I digress.)
So, after consulting with Nate’s pediatrician, an audiologist, a Registered Physical Therapist, a Developmental Therapist, a Special Education teacher, an Occupational Therapist, and two Licensed Clinical Social Workers, we got a diagnosis of autism. That’s eight people, if you’re counting. It takes a village to diagnose this thing.
So, what’s a family who receives an autism diagnosis for their son two days before Christmas to do? Wage war. (And go out and buy a heck of a lot more presents to go under the tree.) As I said in the first blog entry, one in every 110 children is diagnosed with autism. This makes it more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. It puts up a hefty fight. If you’re going to wage war, you need an army. A great army.
But we didn’t know who to call to assemble our army. The State assigned us to a specific therapy practice to administer Nate’s autism tests and we could use them for Nate’s therapy—or we could use another one in the Birth to Three system. However, there was no guarantee that another therapy practice had room for Nate’s participation. We consulted with our trusty pediatrician who felt that any agency blessed by and following the Birth to Three curriculum would be appropriate for our dear boy’s care. So we went with the one we were assigned to—and we love them!
First step? We create an IFSP (individualized family service plan). This is a plan unique to Nate, which will be revised every six months, that sets the goals for Nate’s therapy. The coolest part? Chad and I set the goals. The meeting was creating a wish list of what we want for Nate. We picked five things, but the list could have been infinite. I can’t remember all of what we chose (that paperwork hasn’t returned to us yet) but top of our wish list is that we want Nate to be able to talk. And that, my friends, was greeted as a perfectly acceptable and realistic goal.
Our therapy practice assembled our army for us. The front line is a roster of five amazing women who work with Nate on a daily basis:
Miss Lisa: She’s a Special Ed teacher and happens to be the one who administered Nate’s ADOS test. She is also our case manager. This means she coordinates all of the teachers on Nate’s team and ensures everything goes smoothly. And she has perfect curly blonde hair. She meets with Nate twice a week for 1.5 hours each session.
Miss Alison: She’s a Special Ed teacher. She’s also ridiculously pretty. (Nate’s a little smitten with her.) She meets with Nate bright and early at 8AM on Mondays for 1.5 hours.
Miss Marilyn: She’s an Early Intervention Associate. She also has a son who happens to have autism and it’s been lovely to talk with her about what to expect as Nate grows older. She meets with Nate twice a week for 1.5 hours each.
Miss Susan: She’s a Speech Therapist. She meets with Nate 1 hour each week.
Miss Colleen: She’s a Board Certified Behavior Analyst (BCBA). She meets with us 1 hour every other week. Her job is to coordinate the practicum for all of Nate’s teachers, (literally) chart his progress, help determine steps for growth, and, most importantly, support Chad and me as we raise a child who happens to be autistic.
We’ll also be adding an Occupational Therapist to the roster soon, who will met with Nate 1 hour a week.
In addition, Nate has super terrific teachers at “school” (read: daycare), which he attends two days a week. He has one main teacher, Miss Sylvia, and others who float in and out of his room, including Miss Miriam, Miss Linsay, Miss Suzanne, and Miss Carrie, who was Nate’s first teacher at school. Nate has a therapy session each of his days at school and all of his teachers have been very responsive to participating in therapy and learning about how to help Nate grow by playing side by side with his peers.
Then, there’s the biggest troop of them all: Nate’s family. Mom and Dad are bringing up the front. Then there’s Grandma (called Mam), Grandpa (who goes by the self-selected title of Super Grandpa), and tons of aunties and uncles—biological and adopted—from all around the world. And his lovely blog readers! You’re on this journey with us, too.
As of this posting, Nate’s been in therapy for three weeks—and he’s thriving. He loves his therapists, he loves his teachers, and we’re pretty sure that he knows this is helping him because he’s become a new kid.
Next up? I’ll tell you all about therapy. (aka I Hope You Like That Toy….)