For some families, every month is Autism Awareness Month

  • Published
  • By Shellie-Anne Espinosa
  • 21st Space Wing Public Affairs
Something is different with my child.

Every parent has that worry at some time. For my husband and I, that worry became a reality one year ago.

April is Autism Awareness month and is also the anniversary of when my daughter was diagnosed with autism spectrum disorder.

We started worrying about our daughter, Rebekah, when she was one year old. She was not speaking yet. She did not verbalize at all. She was very quiet except when she was upset. She would scream then, but only for a short time until we figured out what was wrong.

We did a questionnaire at her one-year well-baby check, and had one of the questions raise a red flag. Our daughter did not point at things. This is one of the early signs of autism.

Not knowing anything about autism, we did not think much at all about this red flag. We were mainly concerned with her lack of verbalization. Her doctor said to keep an eye on her progression but not to worry too much. He explained the speech delay was often a product of too much television. While we did not necessarily agree with him, we went with his explanation.

The next couple of years were repeat episodes of her one-year doctor’s visit. Bekah was not speaking and the doctors kept shrugging it off. Eventually we were able to convince a doctor to put in a referral for speech therapy.

Speech therapy did not do much for our daughter. When she turned three, she only used the words “more” and “please” when communicating.

It was difficult having a child who did not speak. My heart broke every time I would hear my friends’ toddlers speaking, calling out for mama or dada and saying they loved them. I knew my daughter loved me, but still, I wanted to hear her say it.

Since speech therapy was turning out little results, we decided to place our daughter in day care at the child development center when she turned three so she could interact with other kids. She picked up some habits through mimicry and developed a few more words, but still only had a vocabulary around 15 words.

After a few months, her main caretaker at the CDC suggested we put Rebekah in the state’s preschool program. That was one of the best pieces of advice we received to help our daughter.

Over the next nine months, Rebekah’s vocabulary improved to 50 words. She still wasn’t speaking in complete sentences, but she had shown significant improvement in speech and some improvement in social interactions.

At one point, while attending a preschool function, my husband told me that something was different with Rebekah. We watched as she did her own thing while the rest of the class participated in games with the teacher. It was hard to watch, but, for myself, it was even harder to hear those words said out loud.

At Rebekah’s four year physical, she had a new doctor. I told him about the issues Rebekah had. He spent the next five minutes attempting a conversation with her and then steeled himself to ask us a question that I will never forget.

“Has anyone ever discussed autism with you?”

My heart shattered at hearing this. I knew next to nothing about the disorder. All I could think was that my daughter no longer had a future. Her doctor tried to soften the question by explaining that he had a son with the disorder. That’s why he was better able to see the signs. He knew what to look for.

Girls with autism are much harder to diagnose correctly because they often do not fit the stereotype of autism. Rebekah had already been learning everything through mimicry and could fool a lot of people. But, for the first time, she did not fool her doctor.

The next few months were stressful for my family. Rebekah began her testing for autism spectrum disorder. She had to see a psychologist, neurologist, physical therapist, occupational therapist and a speech therapist to be evaluated.

At the end of testing, Rebekah was diagnosed with autism spectrum disorder without intellectual impairment. She also received a secondary diagnosis of combined Attention Deficit Hyperactivity Disorder. All I could feel at this diagnosis was relief. We finally knew what was keeping Rebekah from speaking and understanding social situations.

With the diagnosis came resources we could finally use for Rebekah’s development. We were enrolled in the Exceptional Family Member Program and Extended Care Health Option. The Airman and Family Readiness Center offered programs for her and an advocate to help us work with her schools and develop her Individualized Education Plan.

Being in the Air Force family has made all the difference for my daughter’s care. The medical care has been great. She can go to different therapies to help her advancement. She is getting excellent education. We can always depend on the A&FRC for assistance with her school if we ever need it.

As we reach the one-year anniversary of Rebekah’s diagnosis, she is in kindergarten and making lots of friends. The other kids do not mind that she will often flap her hands and squeeze them. This is one of her stimulations, or stims, that she does to show she is excited. Because of this, you will always know when Rebekah is truly happy.

We still have lots of roadblocks ahead of us as Rebekah grows up. She does not understand that she thinks differently than other people. Someday I will have to explain what autism is to her.

For now, though, Rebekah is happy, sweet and will always have a hug ready for anyone who needs it. Autism has changed my family’s life, but with the right tools and attitude, Rebekah has shown that it will not define who she will become.

And the best part about Rebekah’s progression as she comes into who she is—she tells me she loves me at least five times a day, as if she were making up for her silent years.