Part 1: Annie’s Autism Diagnosis

This is the first installment in a three-part series, where one mother relates her family’s journey to accept and understand Annie’s Autism and Sensory Processing Disorder. You can read “Part 2: Understanding Annie’s Sensory Processing Disorder”  and “Part 3: Annie’s Autism Progress” by clicking the posts’ titles.

When Annie was 15 months old, we became concerned that she wasn’t talking. She must not be able to hear well, I thought. She was getting double ear infections as often as dirty diapers, so it was a reasonable explanation. We took her to an ear, nose, and throat doctor who recommended ear tubes. I wasn’t sold on his recommendation because she would need anesthesia. We took her to another ENT, who explained that most kids grow out of ear infections at the age of two, and if that happened for Annie, she would not need the tubes. We decided to hold off.

A few months passed, and Annie was still not talking. I voiced my concerns to her pediatrician, but she seemed to think that all kids developed at their own pace. “I would wait until she is two,” her doctor said. I got into my car completely relieved because I didn’t have to worry for a few more months. I held on to her recommendation because it made my life less stressful, but at whose expense? I decided to reach out to our family friend, also a pediatrician, who had retired a few years before, to see if she could help us with Annie’s needs.

We made Annie an appointment to be evaluated for speech. When the therapists came to do the evaluation, they quickly noticed that she needed an evaluation for occupational therapy as well. Here I was hoping that she wouldn’t qualify for services, and now I’m being told she actually qualifies for two. I felt defeated as a mom. It was my fault for not educating her and helping her to learn her colors and animal sounds on time. She was delayed, and I was to blame.

The therapists came to our home weekly to help Annie. After a few sessions, they explained to me that they saw a lot of “sensory issues” needing attention. They told me that Annie would not be able to work on communicating until the sensory issues were resolved.

Defensive thoughts raced through my mind: What’s wrong with wanting big hugs; she is really affectionate? And, I think it’s really cute that she drags five to 10 blankets around the house. She is an excellent climber and loves to watch TV one millimeter from the screen . . . I do not see the problem.

I had never heard of sensory processing disorder, but when her OT handed me a book one day, I quickly learned all about it.

Week after week the therapists came and went. I also signed up Annie for a horse therapy program where she saw another speech therapist. I loved her therapy sessions at Reins for Life because I could get out of my house. I would strap our two-month-old baby to my chest, and we would walk along the trails. It was all going smooth. I could see a lot of improvement in Annie’s behavior and interaction, but she still didn’t have words. We used sign language and pictures to help her communicate with us.

Six months passed, and her therapists recommended Annie be evaluated by a team of doctors from the University of New Mexico for a learning disorder. I went back and forth about it because I was afraid that Annie would be labeled with a diagnosis for life. I said no.

They kindly waited another month, but they approached me again. I knew that I would be doing a huge disservice to Annie if we didn’t do all we could to help her. With much hesitation, we agreed to have the team come.

I prepared videos of her. I followed her around trying to capture who she was. She was beautiful. She had big blue eyes and blonde hair. I wanted the team of doctors to watch her and see that there was nothing wrong. I was hoping they would see that she was our adorable daughter who was just a little delayed. Even after 10 months of therapy and two recommendations for a clinical evaluation, I was still in denial that Annie was on the spectrum.

In November 2014, our daughter was diagnosed with Autism Spectrum Disorder and Sensory Processing Disorder. My heart broke into pieces that very second. The pain I felt was not only emotional, but also physical. My chest was on fire, and it burned through every piece of doubt that remained in me. I looked at the therapists as their eyes welled up with tears, and I tried to hold back mine. Her life flashed through my head as I envisioned how the many years might play out. Would she go to school? Would she be made fun of by her peers? Would she be able to drive a car one day or live on her own?

We went home with packets, papers, and cards, and it was so overwhelming. We knew that Annie needed to get as much early intervention as she could possibly get. Studies have shown that a child who is diagnosed with Autism at an early age and receives intense behavioral therapy has a better chance to overcome those behaviors. I spent every day researching different schools and programs in New Mexico that offered treatment plans for Autism, but they were three hours away, and most of them had very long waiting lists. I had researched ABA therapy, but our town had only one certified BCBA, and she could not commit to our case. I was so frustrated and disappointed in the lack of services our state provided. Our beloved early intervention therapists were amazing women that loved Annie, but, in New Mexico, they were required by law to stop services at age three, and that day was coming soon. I felt like her quality of life rested on my shoulders, and I was failing her each day we didn’t have a plan.

We decided to move. I was born and raised in New Mexico, and my parents and most of my friends lived there too. My husband lived most of his life in New Mexico, and he was also surrounded by his family and friends. It was a really hard decision to leave all of that, but I didn’t want to ever feel regret. I wanted to wake up in the morning 20 years later and know that I tried everything I could for Annie. If I had one regret, I would not be able to live with myself, and that concern outweighed any amount of pain we might have in missing the people we loved.

Continue reading “Part 2: Understanding Annie’s Sensory Processing Disorder”  and “Part 3: Annie’s Autism Progress” by clicking the posts’ titles.

The Fort Worth Moms Blog hosts the online Moms of Special Needs Kids Tarrant County Area Group, as part of the Neighbor Groups offerings. This is a safe, supportive place where local moms can discuss special needs issues and questions with one another. It’s simple and free to join!

Morgan was born in Roswell, New Mexico, where she grew up with her older sister just outside the small town’s city limits. She attended New Mexico State University where she studied Journalism and Mass Communications. Morgan and Ryan, her husband of eight years have three daughters — Evelyn (2009), Annie (2012), and Scarlett (2014). Morgan enjoys getting to be with all her girls and watching them grow each day. When Morgan is not with her family, she enjoys spending time with friends and golfing with her husband. After her daughter was diagnosed with Autism in 2014, Morgan and her husband decided to move to Texas to find better services for their daughter. In June of 2015, this party of five arrived in Keller, Texas, where they now live. Morgan loves to explore Fort Worth, and take her kids to the wonderful zoo and other kid friendly attractions the city offers. When she has time, Morgan enjoys shopping online, wine tasting, and writing, but in no particular order.