Jack Naunheim was born on New Year’s Day, 2014. His mother, Myrrah, recalls how much she tried to “control” having him born on New Year’s Eve….but despite her efforts…. Jack obviously had other plans. Now at age 4, Jack has shown his family that “life not going as planned” can provide a strength and appreciation of little things that not all parents have the privilege to understand.
Like most moms, Myrrah was enamored with her growing toddler. He loved to cuddle, played independently, and seemed to have his physical and emotional needs met. Since both she and her husband worked full time, Jack stayed home with a sitter. “Looking back,” says Myrrah “there really wasn’t anything that seemed off to me. The only thing we noticed was that he didn’t talk. Neither of us was really concerned because both my husband and his father were late talkers. He also preferred to play alone, and hated to take a bath; but overall, he seemed content, so these things didn’t seem like red flags to us.”
However, when Jack still wasn’t talking at 18 months, his pediatrician recommended that they contact First Steps and have him evaluated. First Steps found that Jack had a speech delay but it wasn’t severe enough for him to qualify for services through their organization. They recommended that Jack start going to speech therapy. Based on the recommendation from a medical colleague, Jack’s paternal grandmother began taking him to the Center for Speech and Hearing. He attended once weekly for several months, with the hope that their ‘late bloomer’ would, like his father and grandfather, simply just ‘start talking.’
At age 2 ½, Jack was enrolled at St. Louis Montessori. His parents hoped that being around other children would encourage both his speech and social interaction. “The transition to a classroom setting was a lot more difficult than we had anticipated. It took him about 6 weeks to adjust and make it through the day without meltdowns.” Myrrah said. “The staff was great. They were so sweet and very patient with him despite how frustrating his meltdowns could be. Jack’s lack of speech meant that he couldn’t tell you what he needed or why he was upset.” Myrrah feels strongly that “if a person’s emotional needs bank is full, they will be far more successful. Everything else is secondary. But with Jack not talking, I felt helpless and like we were struggling to make sure we were meeting his needs.”
Shortly after Jack’s 3rd birthday, his pediatrician, concerned that he wasn’t making a lot of progress, suggested that Jack be evaluated by the Knights of Columbus Developmental Center (KOC) at SSM Health Cardinal Glennon Children’s Hospital and his preschool teacher voiced some concerns as well. She commented “Jack is so bright, but I don’t know how to teach him.” Myrrah scheduled that evaluation, but was wholly unprepared for a diagnosis of autism. While she had discussed it in passing with his pediatrician, therapists, friends and family, autism just didn’t seem to fit. “When I thought of autism I thought of the movie ‘Rain Man’ and I knew that wasn’t Jack. He didn’t seem to have the stereotypical signs or symptoms. I clung to that, as a parent, when you have an image of your child in your head, an image that you have rested a lot of hopes and dreams on, you don’t want to hear ANYTHING that might rob you of that.”
In August 2017, Jack had his initial evaluation with Lynn Bock, S.L.P., Speech Pathologist at Knights of Columbus. She then recommended a subsequent evaluation with Occupational Therapy. These evaluations showed his speech to be primarily echolalic (mimicking what was said to him). He used taught/rote phrases to request, and had very limited spontaneous language. Interestingly, he had taught himself numbers/colors in three languages and preferred to watch cartoons in other languages. Developmental testing revealed skills to be very low in visual reception, fine motor skills, receptive language and expressive language skills. He had limited ability to follow simple directions, a lack of imaginative play, difficulty participating in structured tasks, repetitive play routines and extreme separation difficulties. “I remember Lynn saying he has red flags for autism. And then my brain stopped processing what she was saying. She rattled off several behaviors, and I just remember staring at her nodding my head but not really hearing her. I knew what she said was true but I was so shocked that I couldn’t think straight. I finally said, ‘Okay, I hear what you are saying but how do I explain this to my husband?’ I was just trying not to burst into tears.”
There were two and a half weeks between those evaluations and Jack’s follow-up visit. Myrrah remembers that time like it was yesterday, “That was my grieving period. I had come to terms with the potential of Jack having autism. And even though nothing really changes when the news is delivered, EVERYTHING changes. You have to grieve that your expectations and your dreams now have asterisks. Your CHILD hasn’t lost anything….but YOU have. I knew that two weeks was my time to grieve, because soon it would be time to hit the ground running and make the best success of our new normal. My job would be building his team, and building the most supportive environment to support HIM”.
Jack was diagnosed with Autism Spectrum Level 2. Ready to hit the ground running, Myrrah responded with, “OK…What do we do? I want to give him every opportunity possible and I want him to have the best services available. He’s getting ready to start Pre-Kindergarten in the next two weeks, and I want him and US equipped with everything he needs.” Within one week, Jack had an Individualized Education Program (IEP) and a plan. He would receive speech and occupational therapy from KOC, and the school district would provide additional therapy during the day at his school, The Wilson School.
Fast forward to current day, Jack has been in therapy for nearly seven months with an average of five hours of therapy per week. Occupational therapist, Emily Korte-Stroff brags on Jack’s progress. She said, “When Jack started here, he used to cry and refuse if therapists had him do anything that was not a highly favored task. Jack has since skyrocketed from this, and being able to only be able to do 1-2 teacher directed activities …to doing everything and anything we ask! Jack was so averse to touch and the normal sensory experiences of finger painting and getting dirty, that he would not allow parents to cut his nails or take a bath. After much play and therapy with foot painting, sensory table play, vibratory massage, and other techniques, he started to allow nail cutting and gave HIMSELF a bath!” Emily adds that “he has a better, settled sensory system and his pencil grasp has also gotten much more appropriate for pre-writing tasks of writing his name, so we will be working to write his letters and buttoning/fastening clothing more in the coming weeks.”
Speech Pathologist Cassandra Gaddis is ecstatic with all the progress Jack has made. “When Jack began speech therapy, his language was primarily imitative of things he had heard from cartoons or that had been modeled. Language was minimally functional and rarely to request (more, help, all done, my turn). Jack had difficulty participating with clinician in structured tasks and often put his head on the table or used ‘No’ to avoid. He required a great deal of support playing simple games and waiting for his turn.” She goes on to say that, “Since initiating therapy services, Jack is consistently using three words to request (i.e. “I want ___”, “Can I have”, “I’m all done”). He is labeling actions with -ing and responding appropriately to yes/no questions. He demonstrates understanding of spatial and quantitative concepts and is beginning to label such concepts in conversation. He enjoys simple games and will request “my turn” or give “your turn” throughout. Jack is doing exceptionally well progressing towards therapy targets and continues to make progress towards more complex goals.”
When asked what the biggest changes are in Jack, his mom, Myrrah, becomes tearful. She says, “He is doing incredibly well. He was almost completely nonverbal and couldn’t even tell you his name. I was worried I would never get to know him. I knew that there was a very bright little boy trapped in there but I couldn’t find a way to get him out. Miss Cassy helped me find a way. In many ways, she introduced me to my son. To see that little face smile up at me and tell me he loves me or introduce himself to a new friend is the best feeling in the world. He even tells jokes now! I didn’t do that; Miss Cassy, Miss Emily and the team at Knights of Columbus did that. When Jack received his diagnosis, I thought, ‘This is our life now, forever fighting this uphill battle to get Jack what he needs to flourish.’ I’m sure other parents of special needs kids can relate to that. You take a deep breath and you start to pull on your armor because you know you are going to have to take on the world. What I soon found out is that the team at Knights of Columbus suited up with me. I’ve never been so amazed nor so grateful. The difference between Jack seven months ago and Jack today is ASTOUNDING. We would not be where we are if we didn’t have KOC on our team.”