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In this episode, we discuss coping with pediatric traumatic brain injury as well as dealing with adversity in the medical community against minorities. Latasha Lewis has 2 children with special needs, one with autism, and one with a pediatric traumatic brain injury. Latasha gave birth to her son Cam 3 weeks early. However, due to her race, she was not provided with adequate medical care during labor and delivery. Doctors didn’t listen to her when she was concerned about having a vaginal birth with a 10 pound baby or when she asked for pain medication during labor. As a result, her son was born with a traumatic brain injury, although this was not diagnosed until years later. When her son was born, he immediately was taken to the NICU. Latasha was told the that doctor saw her son, but she was not allowed to be in the room when the doctor evaluated her son and she was never allowed to speak with the doctor about the results.
Although Latasha noticed differences in her son early on, it was challenging for her to get her son a diagnosis. Latasha first noticed something was different around 18 months old. Later, once he was in a classroom, he wasn’t able to do things the same as his same aged peers. But although he had a speech impediment, he couldn’t get treatment because no one had been able to provide with a diagnosis. They weren’t able to obtain a diagnosis for him until Cam was 9 years old.
Cam has been in several types of schools. Latasha was able to obtain special education services for him until age 7 and he had an IEP in the public school and charter school. However, once he turned 7, he was required to obtain a formal diagnosis in order to receive special education. Once his physical school closed, he did an interesting homeschool program, where he worked in his own business most of the time, and other times, he participated in a homeschooling co-op. He had tried numerous types of schooling, but none was a perfect fit. Latasha was excited about his coffee company because Cam learned how to take care of himself, so that if he does not go on to college, he will be able to do any job in business and be able to successfully take care of himself in the world. He now attends a charter school part time and works in the shop part time, but he now has a new IEP. Due to her background in education, Latasha was able to fight the school system and obtain the needed resources for her son. When there were IEP meetings, Latasha attended with a red pen to let the team know what she didn’t agree with and fixed the goals to make an appropriate IEP for her son.
In order to be a good parent to Cam, she had to really learn about her child and adapt her parenting style to what he needed to be successful. She had to learn that each child is different and different strategies work for different children. One has to be a different parent to each child.
Latasha recommends creating a system. When a child is crying or acting out, 1) identify the problem with them 2) talk through the solution 3) talk about what outcomes you/they want to see. Doing these steps the same way over and over creates a new way of thinking and a solution.
Latasha made sure that Cam’s life was a safe place for him, which helped the family to solve any problems or challenges brought up. Latasha created a support system and help for him before he was diagnosed, because she felt that help wasn’t going to come. Therefore, once the diagnosis came, she had already put in place everything he needed. However, a diagnosis did give him access to different services, but it didn’t change anything they were doing at home. They put systems in place to treat the symptoms, rather than the diagnosis. When he was upset, Latasha allowed Cam to experience his experience when he was angry, with some slight parameters. As he began to adapt, the parameters became slightly stricter, allowing him to appropriately cope with anger, without “telling him” how he had to cope. She didn’t want to tell him how he “had to be mad.” She created an appropriate box for him to express his emotions in, and as he aged and learned more strategies, then the box got smaller. Latasha has coped with having 2 special needs children by having a very strong social support network.
Latasha discusses that the parent is the gatekeeper for their child and nothing gets to their child without it getting past the parent first. More of her words of wisdom: You can’t afford to be the kind of parent that you want to be. You need to be the kind of parent your kid needs. Throw out any preconceived notions you had of parenthood. Only take the parenting advice that applies to your kid. Only change a few things at a time. You can’t do it all at one time. Focus on one issue or behavior at a time. Failure is just as important as success. Letting go of the things that aren’t important is a must.
Cam’s Coffee Co. Facebook Page
Cam’s Coffee Company
Shop Cam’s Coffee Company
The Hope Parent Support Group
Latasha’s Facebook Page
The IEP Resource Guide
To Medicate Or Not To Medicate?
The Gift of Failure
The Whole Brain Child
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Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org)
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)
Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple