autism,  family,  milestones,  motherhood,  teen years

Where we are now

The Fargo Hero 5K run just last month

A few weeks ago, J was getting his vitals measured by the nurse at Dr. R’s office and she announced: “He’s 5′ 4 1/2.”

What? I thought. That can’t be right. I’m 5′ 4 1/2″. And then I realized that the nurse had let J keep his shoes on for his height measurement, because J was wearing his AFOs (ankle foot orthosis) and it’s always a hassle to take the AFOs and shoes off and then put them all back on again for a 60 second measurement. But still, J’s shoes plus AFOs probably add only an inch MAX to his height.

For the rest of the day I couldn’t help but realize how tall J really was. I mean, every time I turn to talk to J now, he’s right there, right next to my face. It’s sort of a really crazy amazing thing. I mean, my little boy–the little boy that somehow fit in my belly at one time–is almost my physical equal.


I mean, this was us just a year ago.

It also makes me really reflect on where we are now. This “same height as mom phase” is going to be over in an instant. It’s kind of this landmark moment of child and grownup, and we’re just sitting in this “safe space” for a few weeks, if we’re lucky maybe a few months. And then he’s off growing again, and we’ll be venturing out farther into the deep end, farther into that uncharted territory.

When J was four, about six months before we moved to Fargo, J was in another Dr’s office getting his vitals taken. It was back in a time where I was desperate for answers and help. We had already gotten J assessed and diagnosed at the KU Dole Human Development Center, and we had gotten a really thorough assessment of his skills and deficits. We had already seen a developmental pediatrician at the KU med center, to try to get additional consultation and assessment for J’s autism. Finally, after being on a six month waiting list we were able to get into a pediatric neurologist to see if he could offer us any more help or answers. At that point in the whole process we just wanted to know the prognosis. We knew J had autism. We had two different sources confirm that for us. We just wanted to know how J would turn out–what kind of future J would have. Would he go to college? Would he be able to hold a job? Would he need assisted leaving? Would he stay at home for the rest of his life?

Nobody was able to give us those answers. I thought surely the pediatric neurologist in Kansas City would be able to give us some sort of an idea of what to expect. After all, he was a medical doctor and brain development and function was his expertise. So Steve asked the Dr straight-out:

“What kind of future is J going to have.”

After watching J spell words over and over again on a Magnadoodle and trying to get J to interact with some plastic dinosaurs (which J didn’t have any interest in) he looked thoughtfully at J and looked up at us and asked:

“How old was J when he was potty trained?”

“Three and a half,” I answered really confused. It was pure hell to get J potty trained. He was so obstinate and stubborn that I had to strip him down naked, give him glass after glass of juice and pop, and wait for 7 1/2 hours to pee. For 7 1/2 hours, this miserable child held his pee, ran to the changing table and screamed at the top of his lungs “need diaper” (yes, the kid who refused to talk was screaming that he needed a diaper). It took 7 1/2 hours of battling wills, me vs J until J realized that in order to avoid making a mess all over himself that he would need to comply and go on the potty.

“That’s good,” the Dr nodded. “That’s good. In my experience, kids with autism that are potty trained at or around the same time as their typically developing peers tend to be really productive adults.”

It was the crazy. A child’s prognosis based on the age of potty training? Ridiculous. But at the time I held onto it for the 45 minute drive back to Lawrence as a promise–that J would be okay, that he would be a fully functioning adult, and that things were going to turn out okay. I held on to that prognosis for years to come, bought it lock, stock, and barrel, because that’s all I had. Nobody I knew really knew anything about autism. Experts didn’t know much more.

I look back at the whole thing now and realize the ridiculousness of that Dr’s answer. Clearly, eight years ago, he didn’t know much more than any of the other experts we had gone to, or anything more than the researchers in the books and articles I poured over for hours every week. I’m sure he meant well. We had waited six months to get in to see him. He saw two, terrified, young parents who were struggling to understand their child and probably gave us the best guess he had based on what little he had seen or read about.

Eight years have gone by and still nobody can tell me what J’s future will look like, what kind of adult he will be.

We’re getting closer–closer to those “adult years.” Some days I think about it, I make plans for it. I think of how the college system works and ponder possibilities of how it could possibly work–a class or two per semester, online classes, tech school, etc, not necessarily when he turns nineteen, but farther down the road as a non traditional student. I think of opportunities at Hornbachers and Costco and other jobs he may be able to do once he graduates from high school. Jobs that might pay beyond minimum wage with hard work and commitment. The only thing I know for sure, is that his future will definitely require thinking outside of the box. Yes, there are times I still wonder about the future but still, nobody can tell me what that looks like. J’s potential is still, in many ways, unknown.

What I do know is what this moment looks like now. This moment I have a son that I can look in the eye and who can look right back at me (even with his autism). I have a son, that many times, I don’t always understand, but at the same time understand so very well. At this point, where we are now, I feel like I have a relationship with J, an understanding of J that I never had five, ten, years ago. Even twelve months ago.

Right now’s not a bad place to be.

June 13 2016 020



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