Sometimes getting the “news” is not a singular event. Luke’s first major seizure at eighteen months confounded me as small bits of foam spilled from his mouth. I was stunned when advised to call 911. With Luke in my arms, I was a hair-trigger panic-attack away from losing it in the driveway – the fire department were on the way. They suggested the local hospital, but I had another trauma there. I asked the fireman where he would go if this were his son. Right, Cedars Sinai.
I was stunned when advised to call 911.
A valium sedative calmed Luke’s seizure: I held on while we screamed through stop lights on the opposite side of the street – anything to get Luke there. The intake doctor asked, “Why so calm Mom?” Not able to focus on anything but next steps, I said, “we’re in the right place, right? You guys are experts, right? You know what you’re doing, right?” I can fall apart later.
The stress was crushing; I couldn’t recall my prayers.
The timing was a Friday afternoon and there wasn’t a radiologist available until tomorrow. Luke couldn’t be fed until after the MRI; the stress was crushing; I couldn’t recall my prayers. I settled on a mantra, “I trust in you Lord Jesus.” The lead doctor was followed by an entourage of students – oddly comparable to television. It was all I could do to remain composed; I couldn’t bear seeing Luke in distress with all the wires and tubes while this executive groomed protégés.
We’re terrified of losing another child – how important this child is to us.
I shared how our prior son died of SIDS two years ago, that we’re terrified of losing another child – how important this child is to us. I would not tell him what to do, but to imagine where we were coming from – and to do for Luke as he would for his grandson. He thoughtfully considered; his convoy seemed to hold their collective breaths as did we; then he sent instructions for a specialist to come at once.
“Maybe we missed something.”
Luke’s seizures were both symmetrical and asymmetrical; the former aligned with febrile or high fever; the latter with potential brain tumors. What felt like an eternity, we were discharged a day and a half later; no tumor was found. Fast forward three years. “Maybe we missed something.” Painful. My poor Luke.
I can only imagine what all these tests have on the psyche of a child.
A precursor to the next MRI was to get Luke cleared by a heart doctor. Luke’s doctor called surprisingly quickly after the exam. “Luke has a hole in his heart, we need more tests”. I pulled over and sobbed; I cannot breathe, I cannot function. I can only imagine what all these tests have on the psyche of a child, especially one who already held a heightened fear for his personal safety. Subsequent tests found the hole was inconsequential. The same cannot be said of the process.
Bad news: extreme attention deficit.
They say bad news comes in threes, but I couldn’t fathom it. A call came from the school along with a note that Luke failed two hearing tests. Luke needed a professional audiologist to test for hearing loss. Instinctively, I knew this child could eavesdrop like nobody’s business, but it was my job to do the right thing. I don’t know if we looked weary and lost, but the center staff were so attentive and the location so tranquil. The results were immediate: good news: no hearing loss; bad news: extreme attention deficit.
Doctors, doctors, doctors – an exhausting array with an emerging trend.
Onto more doctors, doctors, doctors – an exhausting array with an emerging trend. Luke was diagnosed with whatever was their particular specialty. Severe dyspraxia was diagnosed by Pediatric Therapy Network (PTN) which impacts an individual’s ability to plan and process motor tasks. The brain doesn’t process information that allows for a full transmission of neural messages. Dyspraxia doesn’t affect intelligence but does manifest itself as language and learning problems in children (Medical News Today). Daniel Radcliffe, who played Harry Potter, had the same diagnosis.
Severe dyspraxia was diagnosed. Six to ten questions to isolate a single thought. Luke was losing his connection with us.
Severe Dyspraxia further explained our inability to communicate with Luke and his inability to communicate with us. There were no nouns or adverbs in his speech, and we asked six to ten questions to isolate a single thought. Luke was losing his connection with us out of frustration. I would intentionally leave chopped up fruit, cheese, yogurt, and snacks on the lower shelf of the refrigerator, just to make sure hunger wasn’t another by-product. Luke had stopped hugging me recently, which broke my heart. We had to find a way to preserve the relationship with our son.
Severe receptive and expressive language disorders.
Enter another valued resource and dear friend into the fray: Shoshana Stauber, a speech therapist with exceptional skills. Luke was diagnosed as having severe receptive and expressive language disorders, inbound and outbound. One day, Luke pulled his sneakers onto the wrong feet. I thought it odd that his toes weren’t sending messages of discomfort to his brain. When I shared the observation with Luke, he looked curiously at his shoes, then back at me. Shoshana later translated: “Luke heard you say that there’s something wrong with his shoes.”
We were beginning to begin.
We met with Shoshana three days a week for language, Gina at PTN three days a week for physical therapy, Maria at PTN two days a week for occupational therapy, and I worked with Luke full-time, learning the vernaculars of various disciplines so we could all communicate and do the heavy lifting – while the neurons in the brain were still forming. We were beginning to begin.
The special needs spectrum is more of a three-dimensional structure and highly nuanced.
I came to conclude that the special needs spectrum is more of a three-dimensional structure and highly nuanced. Having all the labels were not as important as treating the symptoms. Except for a speech therapist, a physical therapist, an occupational therapist, resource aides, psychologists, and administrators, we stopped seeing more doctors. Our dance card was full.
Works Cited:
Medical News Today. Website. September 4. 2022. https://www.medicalnewstoday.com/articles/151951#what_is_dyspraxia.
Future Posts:
- Denial, Cultural Stigmas
- Being the Expert
- Empowerment
- Advocacy
- Assessments
- On Being Human
- Digging In
- Accessing the Curriculum
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