The New Normal: What Our Journey with Autism Has Taught Us

Our journey with autism began around 2004 when our daughter, Charilyn (“Chari” as we call her) was formally diagnosed with autism. It has been at times a long and difficult struggle that has challenged our family in many ways. Charilyn is a fraternal twin whose sister, Alena, is typically developing. My husband, Jimmy, and I have been changed by Charilyn’s diagnosis of autism—both as parents and as spouses.

Chari’s diagnosis came as a surprise to us. Due to infertility, Chari and Alena were the results of an arduous process of trying to conceive. We had undergone various prenatal and genetic tests prior to and during the pregnancy, and the pregnancy was “normal” until the third trimester when I developed gestational diabetes and preeclampsia. At 37 ½ weeks labor was induced, and on March 27, 2002, the girls were born via Caesarean section (Charilyn at 4:20pm and Alena at 4:25 pm). Both measured and weighed within the expected range (Charilyn was 5 pounds, 3 ounces, and Alena was 5 pounds, 12.5 ounces), and the girls also had good Apgar scores.

Developmentally, Charilyn always seemed to lag behind Alena. Alena rolled over, sat up and walked first. When it came to speaking, Alena learned to vocalize effortlessly and she was able to put those vocalizations together to represent meaningful communication. Sounds were put into words, and words were strung together to create sentences. But speech never came together for Chari. I knew around the time of her 18-month check-up that something was quite different with Charilyn. At first, it was believed by all of us that speech was the issue at hand. We thought if we could get her Early Intervention services for speech, all would be fine. So, we did, and Charilyn began to receive speech services.

At about the 2-year point, we knew that Charilyn’s issues were beyond the need for speech services. Charilyn appeared to have regressed. She was nonresponsive to her name. We had her undergo auditory testing because we thought she might have lost her hearing. She began to spend more and more time alone, and her eye glaze appeared “hollow.” She seemed to look through everyone and everything. She was not at all attentive or interested in typical toys for a two-year old. We decided to move forward with a full evaluation, and as we had suspected, Charilyn was indeed “not typical.” She was diagnosed with autism, and she was classified as moderately autistic. We were stunned and devastated, and our whole world was shaken and forever changed.

I felt as if the child I anticipated having and all the promises and dreams for that child were forever gone. I had to reshift my thinking about my daughter – the daughter I had for so long desired and worked so hard to have in my life. But, I also had another daughter whose life and relationship with her sister—her twin sister—was also forever changed. I had a responsibility to help her understand what was about to happen in our lives. While Chari’s life isn’t what we planned or expected, it still brings joy in its own way. The next few years were spent getting Chari the services she needed through Early Intervention. Chari received home-based instructional and speech services as well as occupational therapy (OT). She later attended a specialized preschool program and continued to receive home-based services after school as well. Charilyn is now 12 years old and currently attends Hawthorne Country Day School, and she continues to receive speech therapy and OT. She is still non-verbal, but she is able to communicate using her iPad and iTouch. She has incredible eye contact, is responsive to her name, interacts well and consistently with family and strangers (adults as well as children), and has a very deep level of receptive language. Charilyn’s progress has been astounding. We are amazed every day with her growth and look forward to what tomorrow will bring.

However, all this progress has not been without challenges and costs to our family. At various stages, we have had to identify many services and resources for Charilyn, as well as those for other family members. We have needed to identify educational, as well as psychological, evaluators. We have needed to obtain services for Alena to deal with and better understand the diagnosis of autism. We have had to plan financially for Charilyn and Alena’s future in a very different manner than a family with only typically developing children. We have had to seek out legal advice to plan our will and wishes, and to establish a foundation to support Charilyn’s needs long after we are gone. We have needed to identify respite services and parental support services for Jimmy and myself. And, Charilyn still continues to need socialization classes.

In the past year and a half, Charilyn has started to demonstrate aggressive behaviors typically exhibited by children with autism. We were fortunate to discover the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai. The Seaver Autism Center was able to assist us in identifying practitioners that would be able to assist us psychologically with this matter. We also chose to participate in one of the available research studies in collaboration with YAI. We were anxious to identify additional needed services for Chari and parental support for us.

Our experience with the Seaver Center and Mount Sinai was superb. The staff and doctors are all exemplary, but just as importantly, they are exceptionally understanding of the trek we have been on for the past ten years. They were compassionate, gentle, kind and extremely knowledgeable. We are so grateful to have had the opportunity to participate in this research study and to be working with the Seaver Autism Center. We will forever be appreciative. We continue to struggle with autism, as it is a life-long battle. But, we are so much better armed for this combat because we have the assistance of the medical professionals at Mount Sinai and the Seaver Autism Center. Thank you.

— Maria Garcia Underwood

 

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