Autism Moms and Dads Blog Series-Interview # 2

Janet Shouse is an autism mom from Tennessee. She was connected to us at FIN through our friends at the Vanderbilt Kennedy Center where she serves as a Disability Employment Specialist with Tennessee Works, http://www.tennesseeworks.org/ and is the Program Coordinator for the IDD Toolkit, http://vkc.mc.vanderbilt.edu/etoolkit/

Thank you so much, Janet, for sharing some of your story and the pictures of your handsome son, Evan.

Janet Shouse-Interview #2

Question: How old was your child when they were diagnosed with autism?

Janet: Evan was 27 months old.

Question: Can you share how you felt when you received that diagnosis?

Janet: My husband, John, and I had done our own research into autism after Evan had received a very depressing speech and language evaluation, because we felt sure that Evan had autism. The speech pathologist had then referred us to a developmental psychologist for an additional evaluation. But despite our research, I still felt as though someone punched me in the gut when the psychologist said, “Evan has mild to moderate autism.” At that point, our son had lost all language, would not respond to his name, had little interest in interacting with us, would elope and had no sense of danger.

Question: How has living with autism affected your family? (immediate or extended)

Janet: First of all, we felt compelled to move almost immediately to a neighboring county in order to receive anything close to appropriate services for Evan when he turned 3. We still have had to battle the school system multiple times over the years to get services and Assistive Technology. Also, despite our county’s reputation for being inclusive and our best efforts, our son has spent much of his school day in middle and high school in segregated settings. These repeated battles are emotionally draining. Our family has been and is still very limited in the places we can go, or the vacations we can take. At 21, Evan still requires 24-hour supervision, and at this point, we have very little help with that, so often either my husband goes to an event or I go. Both his older sister and his twin brother have had to make significant adjustments throughout their lives because they have a sibling with a significant disability.

On a more positive note, both my husband and I became deeply involved with the autism community as well as the broader disability community soon after Evan received his autism diagnosis, and we continue in this work. Evan’s sister is also now a professional in the disability community, and his twin is working on becoming a social worker.

Question:What is currently your biggest challenge as an autism mom?

Janet: We are still trying to find a way for Evan to have a functional means of communication, so that he can tell us what he wants, what he needs, if he’s sick or in pain. And we’d LOVE to know what he’s thinking and feeling.

Question: What is currently your greatest joy as an autism mom?

Janet: For several years, Evan seemed very unhappy and on edge all the time and experienced significant behavioral challenges, but in recent months, he has been much happier and willing to engage with us. The light in his eyes, the smile on his face, his willingness to once again hug, cuddle and interact with us brings me great joy.

Question: Has autism affected your faith? If yes, how so?

Janet: While having a child with autism made me examine some things in Scripture that I had not spent much time on before, I believe I have drawn closer to God, as I’ve had to rely on Him in ways that I had not previously. My prayer life certainly blossomed. However, as Evan has gotten older and exhibited more significant behavioral issues, we have not been able to participate in the life of our congregation as much as we would like, and that makes me sad.

Question: Is there anything else you would like to share about being an autism mom?

Janet: I would encourage parents to learn to accept their child as he or she is, as best as they are able, while still providing the therapy, support and services the child needs to be as successful as possible. The unhappiest parents I know are those who really, really want their son or daughter to be “typical,” and who are not able to accept the fact that their child isn’t. Those parents who accept that their child has autism and will always be different seem to find joy in the lives they lead.