Prognosis

This week involved parent teacher conferences, a conference call with a guardianship lawyer, and driving to school to help J through an evacuation drill.

I’ve thought a lot this week about how grateful I am for teachers who are flexible with their classrooms and curriculum to allow J to participate in the ways he can with his peers. I’ve thought about “the end of all public school things” and “adulthood” and what J’s future will look like and how much participation on our end will be needed as parents. I’ve thought a lot about J’s anxiety and how he just can’t seem to make it to the pre-determined time before leaving the classroom on drill days (thanks to another running ah-ha moment. While running on the treadmill this week, I realized how anxious I get for the run to be done when I’m just minutes away from a timed run or less than a quarter mile away from finishing mileage. When I’m outside I can look ahead of me and think, “just the traffic light and then the stop sign, and I’m done. When I’m on the treadmill, I watch the hundredths and thousandths of the mile tick by or the tenths and hundredths of the seconds tick by and I want to just hit the stop button and end it all now. When J is dealing with his anxiety I’m certain he must be physically feeling the same way. Most people I know hate the treadmill because they can’t escape the numbers and it makes the run that much more mentally challenging to manage).

And strangely enough, this week had me thinking about an essay I wrote many, many years ago. Because all of the events of this week relate to this experience: Wanting to know how J’s mental gifts measure up with the deficits of his peers around him. Wondering what his adult life will look like. And trying to understand and manage that anxiety piece. So here is “Prognosis,” an essay I wrote a long time ago about finally being able to talk to a medical specialist about J’s autism diagnosis. Here is an excerpt from that piece:

Prognosis

“I still remember sitting in the office with the pediatric neurologist, Dr H, at Children’s Mercy Hospital. J was five years old at the time, and wasn’t interested the games the doctor was trying to play with him. Instead, J wanted to write words and numbers on his Magnadoodle. In fact, he spelled the words “dinosaur,” “octagon,” “firetruck,” “Hy-Vee Food & Drug,” and pointed out his newfound favourite logogram–the ampersand. The doctor was very impressed.

After a six-and-a-half month wait and a forty-five minute drive from Lawrence, Kansas to Children’s Mercy Hospital in Overland Park, we were finally able to meet with Dr. H.  People say that in the United States, you aren’t put on waiting lists to see doctors.  They’re wrong.  If you want to see a pediatric neurologist, you’ll be put on a waiting list.  And if you’re on Medicaid?  Sorry, they don’t accept Medicaid.  I called our student health care insurance company to ask if we were covered.  We were, but out-of-state rules would apply.  Overland Park is in Kansas, but Blue Cross/Blue Shield considers it part of the Kansas City metro area.  The Kansas City Missouri metro area.

Six-and-a-half months.  Twenty-eight weeks.  197 days.  Plenty of time for J’s brain to form thousands of new neural pathways and shut down others that don’t get used enough.  All that time J’s name was on the list his brain was forming roadmaps we were constantly trying to redirect. 

J scribbled some math facts onto the Magnadoodle too.  5+3=8. 7-5=2.  Dr. H was again impressed.  He brought out a set of blocks and tried again to get J to engage with him.  “Can you build a tower just like mine?” he asked.

J showed very little interest.   He knew all the gimmicky games.  He’d done this same test many times and years before with the other experts.  The developmental psychologist who first suspected autism, the grad students who tested him at KU’s child psychology centre, the developmental pediatrician who tested him at KU med centre.  His early intervention preschool teachers.  He’d done the Mr. Potato Head tests so the experts could see if he could assemble the parts of a face together, testing his cognitive development.  Building towers tests to see if he could imitate another person.  Tests J had failed in the past but was learning to produce desired results on command.

After H tried some basic testing, he asked Steve and I questions. 

“I see that he’s on Zoloft?”

“Yes,” I said, “It’s for the anxiety.  He has a lot of anxiety issues.  The developmental pediatrician at KU med centre suggested it.  She said it was safe for kids as young as five.”

“I agree.  Does it seem to be helping?” asks Dr. H.

“We just started.  She said it might take a few weeks to kick in.”

“Anxiety is a huge part of autism.”  He paused watching Joshua scribble away on the Magnadoodle.  He told us things we already knew.  That there was no cure for autism and that they don’t know why the numbers are increasing at an epidemic rate.  He went on and on about early intervention, and let us know that we’ve done a good job keeping on top of it all.

“Well, I don’t know what else more to tell you.  You seem to be doing everything you can right now.  Do you have any questions for me?”

Prognosis for children with autism is impossible to predict.  Every child is different.  Kids on the spectrum range from low to high functioning.  Low functioning meaning that they can’t talk at all—no verbal skills, behavioural issues, sometimes mental retardation.  High functioning meaning that they can talk and are more able to control their behavior:  the Bill Gates and Albert Einstein’s of the world. 

It’s Steve who asked him the question I couldn’t ask out loud.  The one to which I know nobody had an answer. 

“We want to know, if—you know, if he’ll be able to… go to college, get married and…”

Dr. H looked at J and asked, “Is he potty trained?”

“What?” I said confused.  “Yeah.”

“How old was he when he was potty trained?” Dr. H asked.

“Three-and-a-half,” I said.

It involved two-liters of pop, bags of potato chips, a naked three-and-a-half year-old running around our apartment.  For the first six hours, there was nothing.  J held it in the entire time.  Tumbler after tumbler of pop and juice.  Then came the seventh hour, J going to his room, pulling out a diaper, and begging me to put it on.  “Diaper?  Diaper?” he shook the thing in front of me.  At seven-and-a-half hours he was crying, shaking the diaper and holding his crotch.  At seven hours and forty-five minutes, he finally relented and ran to the bathroom, peeing all over the bathroom floor.  A week of power struggles and he was potty trained.

“Well, you know, nobody knows how these kids will turn out…but in my experience, it seems that those kids who were able to be potty trained at a typical age—like your son—seem to become very functional later on.”

Really?  Predictions based on potty training.  Coming from a pediatric neurologist.

“It shows he has a lot of self-control.  If he can do that, I bet he can control a lot of other things down the road.”

J can do amazing things.  At eighteen months he could point out the difference between a pentagon, and octagon, and a rectangle.  He couldn’t tell me with his words, but he could point them out to me when asked.  He has words now.  He’s not as fluent as most kids his age, but he can communicate basic things.  He can spell words—words second graders can’t spell, and he knows math facts inside out and backwards.  He has an incredible memory. 

But really, predictions based on potty-training? Six-and-a-half months of waiting. Twenty-eight weeks.  197 days. That’s the prognosis. That’s all we’ve got to go on.”

I look at this piece that I wrote so very long ago, and I realized we are a year and some change shy from his public school experience ending. Is J anywhere near where I thought and hoped he would be at this point in his life? No.

But as J and I have both grown, I’ve realized to adjust my expectations and still push him for the best he can do. I’ve grown to understand him better and understand the things that are so challenging to his development. His anxiety–there since he was a toddler–is still the most disabling struggle he has. How can you focus and learn when you are terrified all the time? We’ve also discovered learning disabilities and processing issues along the way. There are a lot of things for J to sort out and learn to live with.

I’ve also learned that this thing called “the life track” is kind of a sham. Benchmarks and rites of passage are often times arbitrary cultural things. I know plenty of “non-traditional students” who go back to college for undergraduate degrees and graduate degrees (I was one of those people). I know plenty of twenty-somethings that live with their parents as they’re trying to decide if college is right for them or if entering the workforce is a better option. People get married old and young. Some people don’t get married at all. Some get divorced, some have kids, some struggle to have kids. This “life track” we’re all supposed to follow? The one that I was so concerned my 5 year old would fail? It’s kind of a sham. We all find our own way at our own time. Sometimes it falls into the “life track” timeline, sometimes it doesn’t.

This week Steve and I are going to meet with the guardianship lawyer. We’re hoping to finalize J’s class schedule for next year we’re adjusting his anxiety meds once again. Followups to the last week, always trying to figure out how to make things work better for J.

It’s always a work in progress, and we’ll “get there” wherever “there” is.

Eventually 🙂