Wednesday, September 2, 2009

Booklet Excerpt by Jon Gilbert

Image: This photograph, taken from, features my dream waiting room. As a parent of a special needs child who has difficulty waiting for appointments, I wish all waiting rooms looked like this one--empty, full of toys, and overseen by a friendly receptionist. (caption by J. lorenzen)

Note: This excerpt from Jon's Booklet, Same, Child Different Day: One family's experiences during the first year after a child's autism diagnosis is a follow up to the previous post that is part of a series on dads and creative storytelling. I think I lot of us parents who have children on the spectrum can identify with this story about a doctor's appointment, a waiting room, and an unfriendly staffer.


Last year we visited a pediatric eye clinic in Williston, Vermont which I have to assume is staffed with at least minimally-trained health care personnel. It was time for Nolan and our four-year-old Madison to have their exams and the office is a solid two hour drive from our home in Rutland. For even the most patient child, this can be a long trip. So when we unloaded and found our way into the 'play' portion of the waiting room, the little ones were ready to unwind.

Nolan can get rambunctious and loud to say the least and this event was no different. When it came time to bring each of the little ones in for their pre-checks, it quickly became obvious that we should handle the observations one at a time. Lori and I were trying to be courteous to the staff since we know how he can get, so she and our older daughter took Mad in first. The office professional made a quiet comment about Nolan's clamor, but at the time I found it innocent; I don't even recall all that she said.

The doctor drew the straw that would award her Nolan and me, and we followed her into a spacious office. He was rattled and didn't care for the dark, but the Doc was patient and assured me she is familiar with Autistic kids. This was obvious by how quickly and smoothly the first check went, even though we struggled a bit to get the dilating drops in my boy's eyes. The Doc then sent us into the waiting room to let the meds do their job for a half hour or so.

Nolan was back to himself in no time; not out of control, but probably a little intimidating to anyone outside looking in. The staff member who had greeted us even came by to close the door to our section of the room; a bad omen that might explain why the little girl who wanted to come in with us either would not or could not.

After the drops did their job, each of our 'teams' took turns visiting with the Doc and she told us when she'd like to see everyone back.

"I'll need to see Madison in a year, and since his eyes are good, we'll give Nolan a break. We'll see him in two," she told us."You mean, you'll be bringing him back to the office?" asked the staff lady. I thought she was joking."

Yes," I told her. "As a matter of fact, I'll be leaving him in your office." I was grinning; she wasn't any more.

"Well, call ahead," she chirped. "I'll take that day off." Maybe I'm just Mr. Innocent and wouldn't want to think that someone was being cruel on purpose; especially not someone in the medical profession who has seen all kinds. I shrugged it off.

Apparently, she had been serious and was under the impression that we are raising a misbehaving child. As we were donning our jackets, she came up behind me sheepishly and said, "I am sooo soooory. I had no idea he was Autistic."

Not 'was'; 'IS'. It didn't go away since we got to the door. And had someone queued this ignorant woman in, because we did not.

In typical 'Jon' fashion I only said, "Yes, he is." I didn't ream her out; I didn't scold her or call her a name or even imply that she was an ignoramus. I just let it go. Maybe I'm sick of it. Maybe I didn't see the point. Instead, we talked about Autism t-shirts that explain the condition and the dumb things some people can say. I bit my tongue.

Okay, here's the scoop: Nolan is a little boy who deserves to experience everything you do: restaurants, playgrounds, malls, and even doctor appointments --- where you would think the most seasoned, trained and compassionate of all people hang out. I don't think I'm going to get him a t-shirt that labels his autism. Instead, I think there's a market for a better shirt; let's try: I'm insensitive. I have no excuse."


Jon G said...

Julie, thanks again for the post; I'm humbled. Please let me know the progress of this project. It's nice to know about other dad's who are out there. Come on, I can see you guys --- you know who you are. Come into the light. It's okay, you big, strong man, you.

Julie L. said...

You are welcome. Am nearly finished with the series, but guys are welcome to come forward and email me. Be quick though! I'm about to wrap it up. : )

Amanda said...

Thank you so much for your kind words. This path isn't an easy one but we are doing the best we know how. I am so thankful for my Son and what he has taught me already. With a lot of love and support we will get through this. I wish you the best and thank you for blogging about your experiences and thoughts. It really helps me to learn new things as we start this journey.
Thank You


Jon G said...


It IS comforting to know there are others out here who understand what you and your family are going through. Even outsiders who try to be compassionate and patient can not fully grasp what the days are like. And only we can share our frustrations allowed, because we know how we TRULY feel. Any time you need support or encouragement, please seek out parents like us.


Julie L. said...

Amanda: Am here to help. John is right. You are not alone. There are a lot of us who understand what you are going through. As for outsiders, they too can be supportive if they know what is going on. I try to teach them as I learn. Best wishes to you too. : )

Corrie Howe said...

Jon, I enjoyed the post. I'm often in a debate with myself about whether I need to explain my son's "unusual" or "non-typical" behaviors. Part of me realizes it's my pride that needs to explain to perfect strangers that I'll never see again that I'm not a bad parent. Part of me realizes that people are unaware and need to be gently educated. I have a really good friend who tried to have children for years. Not too many people knew how they wounded her with their "innocent" comments about when was she going to start having children. But I knew and I try not to ask similar questions of others.

Julie, thanks for posting from dads. I've enjoyed the series.

Jon G said...

I think the most frustrating is when the "outsiders' are family members and THEY don't understand. We have such trouble with tha, sometimes. You expect they would be the MOST supportive, yet, it "ain't always so". Thanks for this series and thanks for your fabulous blog. You're a great supporter, too.

Jon G said...

Right now, my advocacy (call it an agenda, if you will), is to educate anyone I know about the HUMAN side of autism. You have the jenny McCarthy's out there who are bringing awareness to autism in general, and like her or hate her, at least people are hearing the word. But what of the public melt-downs, the repetitive conversations or the simple yet constant hand flapping? I'm the one trying to put faces and personality to autism.
Noble cause or self-centered agenda? Not either. Just trying to bring appreciation.
(Sorry, I'll climb down off my soapbox now!)

Casdok said...

More appreciation is definetly call for.

Jon G said...

I agree