My Perfect Child

[Steffany Lohn]

I knew from the beginning something wasn’t right, even if I couldn’t quite put my finger on it. No one ever imagines giving birth to anything less than a perfect child, but I just had a feeling, call it mother’s intuition, that something wasn’t right. Not until I picked up a magazine left by my mother in law on her previous visit and saw the one page article tucked away in the very back entitled “Warning Signs of Autism”, did my nagging suspicions finally began to take shape.

The pediatric community is loathe to pin a diagnosis of autism on any child under two years of age; my son Tyler was six months, so I followed the article’s advice and contacted my local regional center for an assessment. After what seemed like an agonizing wait, a case worker and an occupational therapist came to our home to evaluate Tyler. He was found to have some “developmental delays” and qualified for services, consisting of a one hour home visit with the therapist every other week.

I had mixed feelings about the assessment. Although I wanted to be certain Tyler was receiving the proper help, “mild delays” didn’t sound nearly as life shattering as autism. As long as no one said that word and my son’s name in the same breath, I could hold out hope that my beautiful baby I’d dreamt of for so long would still be alright.

A year later, however, the signs were becoming increasingly more obvious. Tyler was still completely non-verbal; except for crying he barely ever made a sound. He did not respond to his name and rarely made eye contact. He walked on his toes and flapped his arms. His day was mired in routine, repeating the same sequence of tasks over and over again in exactly the same way, exactly the same order every time.

At 21 months of age, my husband, Paul and I took Tyler to a developmental pediatrician. We filled out mountains of paperwork while she asked a barrage of questions, then turned her attention to our son. She interacted with Tyler for about an hour, then simply stated, in what seemed far too casual a way considering the news she was delivering, “Your son has autism.”

Though I had been expecting it all along, to hear someone, to hear a doctor, finally say my son had autism drew all the breath out of my lungs. It was like an arrow directly into my heart. A rushing sound in my ears drowned out the pediatrician as she advised us on our next steps. All I could think as I looked at my son was what kind of life will he have now?

I stumbled out of the doctor’s office, blinking in the bright sun. I felt like someone had died and realized, in fact, someone had---the perfect child I’d always imagined was gone forever. All the hopes and dreams, the silly banter over whether he’d be a basketball player or a writer, nine months of pillow talk envisioning all the amazing things our son would do, died in that instant. My husband and I were silent on the ride home.


Looking back on that day now, I know it was only my perceptions that died. I had been trying to write the story of my son’s life from such a narrow perspective. Nothing had really changed. Tyler was still the same little boy; I still loved him just as much, perhaps now even more. Life might become a little more challenging, but I had been given an opportunity to step outside myself and witness a bigger picture of the world at large.

Doing my best to stave off the grief that threatened to overwhelm me, I joined a support group and did a lot of research. Look up “autism” on the internet and the sheer volume of information popping up is truly overwhelming. The first thing you discover about autism is, the more you learn, the less you know.

The experts can’t even agree on the cause of autism, now citing the possibility of multiple triggers: genetics, environmental, the link between vaccines and mercury. I’m not interested in the politics of autism, however. What I care about is helping my child and improving the quality of our family’s lives, and the lives of those in similar situations whom I have met along this journey.

Right after Tyler’s diagnosis, I went through a period of worrying about everything he might never be able to do. Would he have friends, be able to live on his own, hold a job, go to school? I was so consumed by all the things he might never learn, I almost missed what he was actually teaching me.

In a strange twist of fate, what I once viewed as a tragedy has found its way to something empowering. Watching my child’s life unfold and meeting others facing the same experiences, has led me to form a non-profit organization in Tyler’s honor, the Find a Way Foundation, dedicated to enhancing the lives of people who are differently-abled and their families. The foundation has some lofty goals, including providing job opportunities and independent living assistance to people of all abilities, but foremost is teaching all of us to understand, accept and embrace diversity. As one little girl put it so succinctly, “Different isn’t bad, it’s just different.”

Meanwhile, Tyler has made incredible progress. He attends an early intervention program and I thank God every day for the staff there, making such an impact on Tyler’s development. He communicates with sign language and a picture exchange system, he is much more focused and aware of the world around him and his gross and fine motor skills are almost completely on track for his age. Most exciting of all, he responds to his name, looks me directly in the eyes and has a vocabulary of several dozen words.

We still have a long way to go, but I feel hopeful about Tyler’s future and what he will be able to accomplish. Now when I look at my child, my heart swells with pride. I see a bright, beautiful, happy child, who before he was even two years old had already inspired those around him to make a positive difference in the world. How perfect is that?

[Erin]

I am not only inspired by what you did in reaction to thediagnosis, but bywhat you didn't do - it's rare, in my experience, to hear the mother of a child with Autism who isn't involved in what you call "the politics of Autism" - and while I agree that it's important to find the "why" of autism, it's equally urgent that we provide loving environments, and fulfilling futures for those who have been diagnosed. That's why I am such a supporter of your project Cafe Inclusion.

[Cami Walker]

She's too humble to brag, but Steffany's foundation has been chosen as the Cause of the Month at 29Gifts.org and our community is trying to help her raise $7,500 during the month of November to make her latest project, Cafe Inclusion a reality. If you can help by making a donation, please do so and help us reach our goal! Every little bit helps, so even if you can afford a few dollars, it really makes a difference. Cafe Inclusion is desperately needed so "differently-abled" people will have better career options.

[Elizabeth Herzer]

Steffany, it sounds like you have done a great deal of research, so I am probably telling you about something you are already aware of, but never assume anything right? Jenny McCarthy, the actress, has a son Evan, who also has autism. She has written a couple of books, and her latest book is Mother Warriors. She has seen huge progress with her son and shares her wisdom in this book. I am also attaching a link to another site first30days.com where there is an interview with Jenny McCarthy that is truly inspiring: http://www.first30days.com/your-health-diagnosis/videos/change-nati.... Tyler is lucky to have you as his Mother - my youngest son is a Tyler too. You should absolutely feel hopeful for Tyler's future.

[Steffany Lohn]

Elizabeth, thank you so much for your kind words and helpful information.

[robert p. wallman]

How fortunate Tyler is to have a Mom like you. Thank you for sharing your story.
The little bit about the disease that I know is through the media and celebrities
like Jenny McCarthy. God bless you and your family.

[BD]

As Tyler's mother, your son is dependent upon you, as his parent, to help him find his way in his world. It is simultaneously both a hard and noble task. Think about the restrictions the world at large would have placed upon him decades ago. Thankfully, as a pro-active parent in the present, you have tools to use to help hammer out a better environment for him in which to thrive. From reading your words, you have obvious compassion, intelligence and drive. I do not have knowledge in this area, but firmly believe that there are answers out there. Early intervention , as you have done, has that gift of promise and hope. Keep strong, build a foundation of supportive people around you and seek current information. We advance as a society in knowledge of what works and what does not from grass roots movements. Nothing can motivate more than love. Wild as it seems, you have the best wishes of strangers from throughout the globe all cheering you and Tyler on. Daryn Kagan has done a great thing with this site. All of us positive, pro-active people can become rocks for each other. My very best wishes are sent to you x infinity. You go, girl!