An Honest Eye

"This is NOT normal!"

Words from my life-long best friend. Sitting across the room from me in my childhood home, just a day or two before the country would be attacked and changed forever on September 11, 2001, she was pushing our older son back and forth in his stroller in an attempt to soothe his crying.

Hanna is from Finland, a former Rotary Youth Exchange Student to our home in 1988. Born in different worlds, we were alike in so many ways. It was a friendship that had seen high school, high heels, makeup, parties, boys, boyfriends, breakups, marriage and babies. We asked each other to serve as a Godparent to our first-born children, and, during this visit, she was meeting her Godson, not yet three months old, and I was meeting my six-year old Goddaughter, Isabella.

I was in the throws of baby boot camp with a newborn who never slept, could not digest his food, cried seemingly nonstop and did not like to be held, swaddled or rocked. I may have been a new mom, but I knew a thing or two about babies, and this one just seemed uncomfortable in his own skin. Even the slightest of breezes blowing across his face set him off. The world, including me, his mom, was his enemy.

I was fat, hormonal, sleep deprived and not understanding what was wrong with my child.

"Some babies just take a little longer getting on a sleep schedule," some would say to me. Or, "He's spirited. That means he's bright. You will be happy about that one day."

I could write a book about the things that have been said to me over the years, well-meaning statements-some even partially true-that have been offered to soften the blow of what was just starting to unfold in that time leading up to Hanna's visit. That's not what I needed.

What good does a half-truth do? Why brush away the inevitable?

I was so tired--so, so tired! And, I was heartbroken. What I really needed was for somebody else (other than my husband, who was in complete agreement) to see what we saw but were too scared to say: that our son was not presenting normally.

I wonder if she knew how relieved I was to hear those honest words?

In the years to follow, we would be offered a myriad of things to make us feel better about what was really happening.

"You know, Einstein didn't talk until he was (insert age--I've heard a few.)" That's a pretty popular one.

"Your son may test in the severe range, but you can't trust this test since he is nonverbal." To parents like us, we took that to mean that he isn't severe. However, I contend that any child who is nonverbal is, in fact, presenting with a severe disability. To couch the test results in a statement that eludes to hidden intelligence ignores the problem at hand. A well-meaning statement, this, in fact, shifts the attention from the cold hard facts to the promise of an uncertain but brighter future.

"He does not have a learning disability. He just learns differently." I suppose this one is offered in the beginning to help ignore the technicalities and to tackle the big picture. In the end, I agree, it doesn't much matter. Yet, at the time, it really did matter.

Is he disabled or not? How bad is it?

Those questions drove me crazy. I knew that people were looking at our child through a magnifying glass, yet I can count on less than one hand the number of people who actually told us what were were facing. Having walked down this road a few years now, I can look at a child with certain challenges and recognize the splinter skills he might present.

My husband and I, although sad for our son's diagnosis, were not naive enough to think that those offering care to him did not have at least a guestimation of where they felt his skills dropped along the spectrum of autism at any given time. It's just that, really, who wants to go on record as being the one to say it? Who wants to go on record with an emotionally-charged parent? Anyone?

Unfortunately, we really didn't feel that approach did us any favors.

We needed straight shooters. We needed more Hannas. We needed people who would say, yes, this is presenting as a severe problem and here is how we are handling it or here is what you can do/where you can research/who you can consult for treatment.

Please, no sugar-coated words. I can't treat those. I can only move forward with the truth.

To this day, I'm sure that my friend has no idea how much her words struck me.

True friendship: it's the kind that will tell you if you have something in your teeth, if an outfit makes you fat, and, sometimes, if your kid isn't presenting normally. I just love that about her.

Not long after her declaration, the Twin Towers were struck in New York City. She and Isabella stayed with us an extra few days while this country and our world struggled to grasp the complexities of what had just happened to the face of world terrorism.

The minute the airways were clear between the United States and Finland, she booked their tickets to return home to her husband and younger daughter waiting anxiously for them.

"We can't live in fear," she had said when we asked if she was sure she wanted to fly on an airplane so soon after terrorists had used airplanes as a means of acting out their hatred against this country.

She was right, and it was with that attitude that I moved forward from her visit, never again to be the same.

Then an editor for a Finnish magazine, Hanna wrote an article about this visit to the States. Here she is pictured in that article(from the right) with her daughter Isabella, my nephews Adam and Drew and niece Ally.