Autism Speaks Official Blog

At the time of delivery, there is nothing more special than looking into the eyes of your child and saying hello. That feeling is so overwhelming and powerful, that the fears of pregnancy are long gone. The happiness of a seeing a healthy child in front of your face does nothing but bring joy to any parent. A physical from the doctor makes a parent feel good and safe to go home and become a parent.

I think nowadays, most people are aware of developmental delays – autism, mental retardation and the like. The idea of your own child having one of these delays is a powerful fear, but most people believe it will not happen to them. In other words – “how can it be possible when the doctor said my child was completely healthy?” In our minds, that happens to other people.  

When I watched my daughter hit all of her infant milestones ahead of the norm, I could not be any more proud. I loved to hear her coo and giggle, and watch her smile. I loved watching the fascination in her eyes when she would manipulate the world around her. But I started to worry when the cooing stopped. I wondered how she forgot “mama” and “dada.” At around six months old, my daughter became so fascinated with a toy and completely ignored me.

It hurt. It hurt so bad that I pretended she was just learning. I pretended that it was normal for kids to play with toys for an hour without even looking at the parent for approval or a smile. I thought my daughter was just really good at self-soothing. I just couldn’t imagine how other mothers always complained that they couldn’t get anything done because their child needed constant attention.

I had my daughter tested at six months, nine months and 12 months. Early intervention was never approved because she didn’t test below any averages for the “norm.” But I knew. I felt it. I felt the look of confusion in her eyes when I said, “I love you.” As crazy as it sounds, I still see that look every now and then when I say it today. And this starts causing the fears to creep up again. The fears can devastate any parent when any atypical child seems so healthy on the outside, but so different on the inside.

Fortunately, I found an awesome doctor who finally understood and wrote a prescription for early intervention for developmental delays. She started therapy and I found a neurologist that performed an exam. She was diagnosed with infantile autism at a severe level when she was 15 months old. That began the journey that was extremely new and scary.

I can understand the sadness, the grief, the anger, the fear and the confusion. I went through it all in a short time. My husband, who is in the Army, was gone during the time of diagnosis. I felt so alone. I remember thinking, “My daughter isn’t going to talk. She isn’t having sleepovers, friends, or tea parties.” I would wake up every morning thinking, “Time to get up. My daughter has autism.” To avoid unnecessary stress, I didn’t tell my husband while he was gone. There was nothing he could do, and I didn’t want him to feel like I did. I felt like the secret I was keeping weighed 50 tons.

My daughter is now 23 months old. She has had speech therapy, occupational therapy, and specialized instruction. She starts toddler group soon, and has had multiple doctors intervene to help us heal the aspects of autism mostly overlooked. This includes gastrointestinal problems, allergies, ear infections and regular colds. We started the GFCF diet a couple months ago and did it hardcore. We have done everything in our power to make her as comfortable as she can be.

I cannot begin to count the amount of people that do not believe me when I tell them that she was diagnosed with autism. Sometimes people make me feel crazy for believing it. I know in my heart my daughter is different than other children her age.  My daughter not only amazes my husband and me, but her doctors, therapists, and family and friends all are amazed at her progress.

My daughter progressed from a mute child who played with a toy for an hour to an adventurous, smart chatterbox. With the combination of all therapies and the GFCF diet, she has developed beyond belief. She plays pretend, gives kisses, follows instructions, plays with toys the proper way and talks our ears off. She counts to twenty, says her ABCs, sings songs, and tells me when she is hungry (this was the biggest obstacle!) She is so smart; I now fear I won’t be able to keep up with her.

I have learned so much in such a short period of time. I have learned that the fear of autism is much, much worse than the actuality of it. I learned that I do not have to accept the “norms” associated with autism. Every kid and parent is different, and it is teamwork that brings success. I learned that while some people may never understand, a simple explanation helps people to think a bit more about judging others. Many people are more interested than they get credit for, and answering the questions can only help society as a whole.

There are so many lessons learned through this journey so far, and I’m sure there is so much more to learn. But I am not as scared as I used to be. The fears don’t overwhelm me, because in my opinion, there is nothing to fear when you take control. This is the greatest lesson I have learned. My husband and I took control of our daughter’s health. We sought help, we did our own research, we asked questions, even when we felt like we were stupid for asking. We put the pieces of my daughter’s puzzle together ourselves.

My daughter is my world and I would do anything to help her become strong where she is weak. That is my goal. Her weaknesses will eventually become strengths. It takes many people and a lot of time, but that is what I am meant to do. As a parent, I can only do the best that I know how. I hear stories and watch other parents travel a similar journey as my own. I just feel a connection to them, because I know they are working so hard to do the best they can. The successes are counted by the strong parents, therapists, doctors, families, and friends who are piecing together a puzzle of their own. And THAT is why we see so many success stories.

This “In Their Own Words” essay is written by Stacey Eller of Erie, Penn.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.