Finding Jon’s Voice

 by Kemisha Petersen

When I first met the Starr family, I was immediately greeted with a sense of a strong connection and bond. Right away the anxiety I often have of meeting new people dissipated as I took in their kind introductions and gentle energy. Jon walked towards me holding their youngest, Joseph, in his arms while their daughter Jane walked beside him. Heather then approached me, her hand grasped around Jon Jr.’s. Bending down and saying hello to him, Jon briefly made eye contact and smiled before motioning towards the door of the restaurant we would be sitting down at. He was lively and present, every so often grabbing his mother’s face and touching it with his own. As Heather and her husband began to talk about their journey with their son, the more I began to understand the monumental progress he has made in just a few short months. After all, this was a little boy who had been completely nonverbal, but was now counting and spelling his name.

Jon Jr. was a year old when his mother began to pick up on the fact that something wasn’t right with his development. “He wasn’t really making eye contact,” she began. “He didn’t really like toys, and wasn’t wanting to engage socially the way typically developing children would.” Many children show symptoms of autism by twelve to eighteen months of age or earlier. With Heather’s background as a physical therapist and knowledge on pediatric disorders, this was enough to spike concern. Heather and her husband immediately enrolled their son into speech and occupational therapy, with speech being the most prominent delay for him. He was completely nonverbal, did not babble like most children his age, and was not attempting to make words. They stuck with these therapy programs for a long time, but witnessed very little and slow progression in their son’s development. Jon Jr., now six, did not receive his autism diagnosis until he was five years old. It can often take many months, or years, to be officially diagnosed with autism because symptoms can continue to emerge – or fade away – as a child grows from infancy to their toddler ages.

After recruiting the help and opinion of a biomedical doctor from Connecticut, submitting lab samples to discover his brain chemistry makeup, and trying out supplements such as serotonin, Jon and Heather began to see more improvements within their son. Then, roughly three years ago, they decided to start researching the benefits and effects of CBD oil in children with autism. There were minor but important changes, one of them being less self-stimulatory behavior (also known as “stimming”) in their son, which is repetitive body movements or movement of objects. However, the CBD oil just on its own was not enough to give Jon Jr. the full scope of relief he was needing. Once there was talk about legalizing medical marijuana in Oklahoma, which Heather admits to have been against her entire life, she began to do her research. She credits blogs and videos created by other parents in legalized states for giving her the courage needed to try medicinal cannabis products for her child, seeing as there is still not an abundance of research regarding children with autism and THC trials.

“Basically what I found was that if there wasn’t going to be a positive effect, there wasn’t going to a negative one either. Something natural and from the earth wasn’t going to cause him any harm,” said Heather. “I went to his pediatrician for a recommendation, and the only reason why she said no was because there wasn’t enough research. She was in full support of our choice to seek it out, but I was going to get that recommendation one way or another.” Jon Jr. went on to receive his medical card in December of 2018, and shortly after his mother decided to visit The Peak dispensary in the Plaza District. There she met with owner Christee Wittig and together they crafted a plan of how to give him the adequate ratios of CBD and THC oils he was needing, ultimately settling with a 20:1 ratio with CBD being the dominant component.

There have been massive changes within his behavior, and overall quality of life, since this new approach. Along with now being verbal, Jon Jr. has become much more engaged. Usually he was not one to play with his brother or sister, often needing to be prompted to do so before stopping after very short periods of time. Now, he seeks out connection with his siblings, grandparents, and others. Originally only sleeping for three to four hours at a time and then not sleeping again for two days, now Heather can count on one hand how many times he has woken up in the night since starting medical cannabis products last December. His father, Jon, noted another drastic change. “His ability to sit still has improved. Unmedicated, he will constantly flail his arms, jump and holler. He has really calmed down, and doesn’t become overstimulated like he was before starting THC.”

“He has become more a part of our world. So much more present,” Heather said, smiling and relieved.

Despite this incredible progress in their son, Jon and Heather would still like to see improvements and developments within Oklahoma’s medical cannabis industry and their products. “I would like more options for people like him, for children. Maybe people that are not really looking for things like pain relief above anything else,” Heather explained. “More options for patients who have needs like his, with more neurological type symptoms that need to be addressed and treated.” She described hoping to one day soon find a broader variety of CBD and THC tinctures with different numbers in ratios, so that way she won’t have to continue measuring the doses on her own.

Heather also hopes to see the eradication of stigma against medical marijuana. “I want for people to know that it’s not everything negative you may assume it is if you haven’t tried it. It can be used for good and to help people, and I want people to know that.” Her advice to skeptical or wary parents who have yet to go down the route she and her family took is simple: just try it. “You have to know your kid and you have to know what you are wanting to get out of it. I never wanted my son to be under the influence, and I didn’t want to change his personality or who he already is. I just wanted his anxiety to decrease, which is in correlation with his stimming. I wanted him to be able to open up and become part of this world more. And, I was hoping for more vocalization because I heard that was a possibility. It turns out that it definitely was.”

As Jon Jr. continued to laugh and pull his mother’s face close, I decided to ask one last question about the future. Their future as a family, and Jon Jr.’s future as an individual. Like any parent, Heather and Jon just want their son to be happy in his life above anything else. They dream of him catching up developmentally with his others in his age group, to grow up and get a job, or to one day get married. They want for their son to be able to function in this world so that he can live a life that he wants, on his terms. As a family, they would love to continue being able to do things with him, that he continues to engage, and be able to tell his parents any needs or wants that he may have.

Heather turned to smile at me again, excited for whatever is to come. “With as much progress as he has made in two months, I don’t feel like it isn’t possible. We can only go up from here.”

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