Love and Support Lead to First Words
The first words Stephany and her husband Jose heard from their son Jesus and their daughter Sophie must have been sweet. The courage shown by this couple in raising not one, but two children with autism inspires us.
Four years after their oldest son Jose was born, Jesus was the latest gift to their growing family. Initially, Jesus seemed to be developing normally but then somewhere between eighteen months and his second birthday, Jesus stopped using any words. Stephany shared, “He had been a really happy kiddo playing and all of a sudden he was like almost in his own world.”
At first, they thought his lack of word use was related to a loss of hearing, but testing revealed Jesus’ “perfect” ability to hear. This caused them to suspect other causes including autism and they were immediately referred to the Helen DeVos clinic in Grand Rapids where Stephany described the “awesome specialists” there who provided a full examination, analysis and ultimately a diagnosis.
When the physician shared Jesus’ diagnosis of autism with his parents, he asked them “Why aren’t you crying?” Evidently this is the response of most parents upon hearing this difficult news. Stephany shared that she had anticipated the diagnosis and told the doctor, “I came here to get help.”
Just prior to this time, the family welcomed a new member to their family who they named Sophia, and whom they affectionately refer to as Sophie. In September 2015, while the family was searching for providers of ABA Treatment for Jesus, Sophie experienced without warning a traumatic physical illness which left her on life support and with loss of all movement on the right side of her body. The physicians provided little reassurance that Sophie would be able to walk let alone breathe her next breath without support. After months of therapy at Mary Free Bed and with other supports, Sophie made miraculous progress, first with feeling in her foot, then sitting up and eventually walking. On top of these many struggles, Stephany started to see signs of autism and had her daughter tested as well.
Jesus started in MOKA’s ABA program only three months after his sister’s traumatic experience. After six months, Jesus made significant progress including imitating gross motor movements, starting to imitate sounds and eventually using words again. Sweet words. According to his mother, he now uses about 10-15 words without help and this “…blossomed once he learned to imitate motor movement.”
Sophie started work with MOKA’s Youth Autism Specialists in December, 2017 and has made great strides including many new communication milestones, improved response skills, and engagement in social activities with her peers.
One is struck by Stephany’s proactive but calm approach to her children. She and her husband faced these many challenges with courage and faith, holding on to dreams of independence for all their children. Stephany’s work as a first and second grade teacher put her in touch with the developmental phases of children. Her advocacy for her own children clearly made a difference and she is a vocal advocate for early identification and intervention saying, “I can’t stress early intervention enough. I see so many parents who are afraid to get a diagnosis because they are afraid of what the future holds afterwards. But for me it was like ‘okay,’ this diagnosis gets me a ticket to get resources and help.”
Stephany and Jose are excellent role models as parents of children with autism. They accepted their children’s gifts and abilities as well as their challenges and proactively pursued answers and treatment. Impressively, it did not change the way they see their children. As Stephany put it, “Jesus is still Jesus whether he has autism or not. That does not change who Jesus is, it’s just part of how he functions and his personality is the same. I don’t think Jesus would be any different had he not had autism, it’s just that he’s going to learn things differently than others.” This clearly demonstrates Stephany and Jose’s inclusiveness and supportive attitude.