Thriving in the Midst of Chaos: Parenting With Special Needs Kids

Episode 46: Advocating While Having Cerebral Palsy With Guest Win Charles

In this episode, we discuss growing up with cerebral palsy. Guest Win Charles is a CP advocate, retired education, writer, and podcaster for 3 podcasts. Win knew at age 6 that she was different from her peers, but she didn't know how. She was treated as able-bodied in school up until high school and was never treated any differently than her other classmates. She was only told she had "CP" on the first day 7th grade. She did further research on CP in high school, but didn't discover that she had cerebral palsy until her 20's, as it was always called "CP" and no one ever explained further to her. When she was initially told she had CP, she became sick to her stomach, but her mother wouldn't let her stay home from school that day. Later, high school was very hard for her. She was in inclusion classes in all classes until 8th grade and didn't enter any special education until high school. Kids would knock her over in high school, as they didn't watch out for her. Unfortunately, people are still not always nice in adulthood, and still occasionally stare.

Win was not provided with any assistance with transition to adulthood. She had to approach the rehab faclities for assistance, find resources for herself, and had to do a lot of research for herself. Win wishes her mom realized how difficul day-to-day living was for Win. Her mother was her primary caregiver until Win was 14, and then others became caregivers for Win as well. Win had therapies from the time she was born, however. As an adult, Win is doing alternative therapies, which unfortunately, insurance doesn't cover. Win wishes that her mother had sent her to better PTs when she was younger and had better at-home therapy programs. She wishes that medical technology were better back when she was born. Win recommends that once a person receives a diagnosis, parents should ask lots of questions, and do as much research as they can on the condition. For teens, make sure they get involved in Vocational Rehabilitation or find them a job coach. Win also found United Cerebral Palsy Association helpful. Win recommends that parents try to grow a strong social support network for themselves and their children.

Links: Website Ask Win Podcast Artwork From CP Podcast Amazing Voices of Teachers Podcast Links to Win's Books Twitter LinkedIn YouTube Her Facebook Page Podcast Facebook Page United Cerebral Palsy Association

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 45: Combating Racial Discrimination In The Special Needs World

In this episode, we discuss discrimination and adversity against minorities in the special needs world and how to start combating discrimination. Guest Latasha Lewis experienced discrimination and diversity across all areas of maternal care and care for her son, who experienced a pediatric traumatic brain injury. Latasha discusses that children of color tend to have a higher rate of suspension, juvenile justice encounters, and a lack of graduation. This is a biproduct of discrimination and bias. Implicit bias is a bias that shows up in those working with children of color who have special needs. Implicit or unconscious bias comes from the messages one receives growing up about minorities, to the point where it is hard to discern what is true and what you have been taught. The mind makes assumptions based on the stories one has been told. Students of color therefore receive (negative) differential treatment due to the messages others have received growing up about individuals of color and therefore the student is sent to the office more often or is seen as a trouble maker more frequently. A lot of teachers or providers are unaware of this bias, and so the treatment may not be intentional, but it is there nonetheless.

In school, black males are often seen as more threatening and menacing by white female teachers. Dr. William T. Lewis discusses that "white" is often the standard and as one gets further in color from white, one is seen as having more deficiencies than white students, especially since the teacher has less common life experiences to the student. Teachers may look at the white male's behavior as being "boys will be boys" and the black male's behavior as being overly aggressive. This leads to systematic racism.

The IEPs are often focused on disability rather than ability, and therefore, the goals are often below what the child is capable of. Students of color who have disabilities may also be ignored or overdiagnosed. Latasha and William discuss how states receive money based on the severity of the diagnosis of the children are and therefore, sometimes overdiagnose especially in lower-income areas. Black males are often most overdiagnosed, which leads to economic oppression. There is data to show that black males who are in special education have double or triple the chance of ending up in the justice systems.

Moreover, a lot of children get stuck in special education classes when they don't need one, and end up with a certificate of completion, rather than a diploma, and therefore, can only get jobs that barely provide a liveable wage. Some parents aren't able to be as involved in their student's education because they need to work very long hours at work to provide necessities for their family, which needs to come first. Other parents may be involved but they trust the educational system and when they go to the meetings and trust they have the best interests of your child, when that may not be the case. On the other hand, there may be a power differential, where the parents are intimidated by the IEP process and education system, so they may not engage or be an advocate, because they do not see themselves in a position of power. To start changing the education system, teachers have to be better and differently educated. And remember, you always have the right to have someone else attend your IEP meeting or have someone else go in your place.

Both guests have concerns over the safety of their sons, even from the police, as the children may frighten if the police approach, due to sensory issues. This may be taken by the police as evading the police, not complying, or becoming combative, and may lead to the children being harmed or killed.

To work toward change, the first step is self-awareness. The second step is having a conversation about how this issue affects yourself and others. Next, we have to work toward intentional action (advocating change in policy, training).

Links:

CamsCoffeeCo Facebook Page

Cam's Coffee Company

Shop Cam's Coffee Company

The Hope Parent Support Group

Latasha's Facebook Page

Instagram

Latasha's Website

William's Website

Dr. William T. Lewis: Beyond Color Blind

Email us if you have any questions or ideas!

We are now on instagram!

Check out updates on our website.

Follow Thriving on Twitter.

Check us out on Facebook and join our parent group!

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music:

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

Episode 44: Managing Overwhelm In Parenthood With Guest Laura Hernandez

In this episode, we discuss managing overwhelm in parenthood and putting systems in place to make special needs parenting more manageable. Guest Laura Hernandez has 10 children who live at home, and she homeschools many of her children. Three of her children have special needs. She needed to put systems in place for herself and her family, in order to make life so much more manageable. After helping some friends do the same, she chose to create her own home management company, Mama Systems. A home management coach sees where the stress points are in a parent's life and comes up with ways to manage those things. She finds aspects of their lives to delegate and finds ways spouses and children can help. She also helps parents find time for themselves and time to engage in self-care.

Paperwork is very overwhelming and is never-ending in the special needs world. For health, education, and everything specific to that child, Laura recommends that everything should be kept in one binder. Keeping paper copies is helpful, even if you can access the records online. In this binder, there should be sections for health, school, and evaluations. There should be a separate binder for therapies and evaluations completed through therapy. The binder should be split up into each service. It can be helpful to also have a section for pre-filled out time sheets. This last part saves a ton of time and chaos.

Getting prescription medications delivered and automatically refilled saves Laura a ton of time. Hiring someone or using a grandparent if possible, to take the children to therapies can save gobs of time.

Navigating paperwork related to grants is crazy making. Making a google spreadsheet about all the grants is helpful. Make columns for the date you applied, when you got the grant, and when you can apply again. Keep a copy of the actual paperwork. Highlight it in red if you are completely denied for the grant. You should keep a separate binder just for grants.

Laura became overwhelmed by the quantity of paperwork related to IEPs. Her special education teach said that it is only important to keep FIEs, the IEP only for that year, and any updates during the year.

Regarding home life and mentally managing life, first, sit down and take note of what you want and what you don't want. Make a plan for your ideal day and week, what you would want to happen, and who you would want to make each item happen. Then, see how much you can make happen. Batching work-days is also helpful (like wednesday laundry day). When you have young children, you can make life smoother by using lots of charts and structure, to give them expectations. Set consequences if the rules are not followed, and make sure you follow through each time. To better delegate, make a list of everything you are doing during the day and everything you want to be doing during the day, pay attention to your daily experiences, figure out what brings you life and what doesn't, and delegate the things that anger you. Give yourself permission to take care of yourself. Think about what you would like to do and prioritize to make it happen. See which things are nonnegotiable, and what you can move around so that you have more time to yourself.

Links: Website Instagram Youtube Facebook

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group!

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 43: Managing Sensory Processing Disorder With Guest Erin Grujic

In this episode, we discuss sensory processing disorder and how occupational therapy can assist. Sensory processing disorder looks like different things in different people. Everyone, neurotypical or not, has different sensory preferences and it is important to make sure those sensory needs are met. This disorder can be difficult to get diagnosed since it is not in the DSM-5. However, occupational therapists can assess the child's sensory needs and aversions and how their sensory processing impacts a child's daily functioning.

Regarding touch, when children have lots of touch needs, the child may not be able to their hands to themselves and they like to touch everything. They like to be messy and they are seeking more input. When a child is touch avoidant, they don't like having their body washed or their hair cut. In some kids, their brain doesn't make sense of touch, and so they don't know how much pressure to use when writing or how strong or light they are being. A child who is visual averse might be overwhelmed by bright lights and rooms. Additionally, when there is a lot of information on the page, sometimes the words can jumble and things might not make sense to the child. For auditory aversion, sounds can be too loud and the child may need to use headphones. If they aren't processing the auditory information properly, parents can make eye contact or tap the child on the shoulder to make sure that the child is attending. For vestibular dysfunction or aversion, there is too much input into your vestibular and visual system. Some children get car sick, are scared of heights, or have a fear of their feet leaving the ground. On the other side, children may not be able to sit still or they might love to spin. They tend to want to move and climb and jump and need more input.

In a sensory diet, it is important to give the child the big input they need, like running, climbing, jumping, and crawling through tunnels. Vestibular, proprioceptive and tactile input are the three most important things to include in the sensory diet, because children get the most out of them more quickly. Proprioception is heavy work which gives information to the joints, but it can ramp up or calm down the nervous system, depending on what the body needs at that moment. Trampolines, exercise, and lifting are really good. However, it depends on the child and what he or she needs at that moment.

To implement this, find a therapist that has the right training. They will try different activities in session and see what works for the child and then will teach the parents and teachers how to implement this. They will teach parents to notice when a child needs more or less sensory input.

Links for Erin: Instagram Facebook Website

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check out our Facebook Page! Check us out on Facebook and join our parent group! We are also on Pinterest!

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 42: Coping With Pediatric Traumatic Brain Injury With Guest Latasha Lewis

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.

Links:

CamsCoffeeCo Facebook Page

Cam's Coffee Company

Shop Cam's Coffee Company

The Hope Parent Support Group

Latasha's Facebook Page

Instagram

Latasha's Website

The IEP Resource Guide

To Medicate Or Not To Medicate?

The Gift of Failure

The Whole Brain Child

Email us if you have any questions or ideas!

[email protected]

We are now on instagram!

Check out updates on our website.

Follow Thriving on Twitter.

Check us out on Facebook and join our parent group!

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music:

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

Episode 41: Benefits of Inclusion in The Community With Guest Genia Stephen

In this episode, we discuss what it was like growing up in a with a great community that had a positive vision for people with disabilities and their families and how that helped our guest when her son was born with significant disabilities. Guest Genia Stephen's younger sister was born with a disability, so Genia was exposed to differences at a young age. Her mom, although never exposed to individuals with disabilities in the past, was a huge advocate and supporter of her daughter. Her mother took to the yellow pages to search for treatments for her daughter, and was very lucky that those who she chose were on the cutting edge of their professions and worked hard to make sure that inclusion was a huge focus for children. Genia's mom and the leaders at her daughter's preschool were working very hard to increase inclusion in schools.

Later in life, Genia gave birth to a son who has an intellectual disability. Due to her prior experiences and her health care background, she found that she was more prepared to raise her son with disabilities than she otherwise would have been. She found it was helpful to already have connections with people who understood disabilities and were supportive. She found that in close to 40 years, very little has changed in the disability world. She met numerous people who hadn't ever had a positive experience with someone with a disability. Having grown up with her sister, she knew ways to maximize the good life for her son, such as inclusion in school and in the community. She knew from the beginning that her son would be in an inclusive classroom in school. She was very preemptive about schooling for her son and interviewed schools to make sure they would be inclusive. She made sure that when he was very young, her son went to school as often as he could (although it was for a minimal about of time), which prepared him for when he started Kindergarten. Another plus was that his classmates and teachers already knew him. Genia noted that there is lots of evidence that the self-contained classrooms do not work and may be negative experiences for the children. Being in a self-contained classroom may also reduce your child's chance of being hired for a job after high school. Role-modeling in inclusive classrooms, however, has been shown to be very effective. She made sure her son engaged in the community and is on several community sports teams. She made sure she found out what her son's interests were, what the social roles were for children of that age, and found where those activities were happening that her son wanted to engage in. She made sure that he was included in these activities, but also that the accommodations were reasonable, so he was able to maximally participate without minimizing the activity to him or others.

Her website came about because she wanted to meet parents where they were early in their journey and to provide them the opportunity to be introduced to a disability-inclusive community and have the opportunities for thinking and learning that she had growing up, since not every community has in-person opportunities to learn. She offers paid courses and memberships to help with the "how-to" over time and offers free monthly expert presentations by world thought-leaders.

Links: Website Facebook Group Podcast Instagram Theory of Social Role Valorization Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 40: Having a Healthy High-Risk Pregnancy and Coping With Birth Trauma With Guest Parijat Deshpande

In this episode, we discuss experiencing trauma when parenting a child with ongoing medical complications. Guest Parijat Deshpande's parenting journey began with an ectopic pregnancy rupture, IVF and prolonged bedrest. She eventually got pregnant with her first child, experienced PPROM and went into labor very early, and delivered at 24 weeks after having been in the hospital for 15 days to ensure that she remained pregnant as long as possible. Shortly before she went into active labor, she looked up what a 24-weeker looked like, which she felt made a humongous difference for her when her son was born, because how he looked didn't surprise her. Her son had a 109 day NICU stay and then due to his fragile medical conditions, he was on at-home lockdown for 2 years. The NICU stay was a huge shock for her; the noises, the sounds, the machines, the nurses who didn't know anything about her. Toward the end of her son's NICU stay, he had to switch hospitals due to possibly needing a surgery that the initial hospital wouldn't be able to provide. Then, they were at a new hospital, with new routines, new people, and no familiarity, which was really difficulty for Parijat. She was thrilled on the day of discharge, as they were finally free! However, she still needed to navigate preemie parenthood and just parenthood in general. They had countless doctor and specialist appointments and a huge team of people still following him. Therefore, life was a lot busier after discharge. There were also a lot of identity shifts, such as discovering who her son was now that he was home and who she was as a first time parent. Additionally, as a parent of special needs, Parijat found herself wearing zillions of different hats (mother, therapist...).

During the 15 days between being in the hospital and delivering her son, she realized that whenever her anxiety rose, her contractions picked up and every time she calmed her body down, her contraction would stop. She didn't want her child to be born due to anxiety; she wanted him to be born when it was time for him to be born. Therefore, she delegated things to others and focused herself on keeping her body as tension free as possible. Later, when she looked into it, she found 70 years of research on nervous system regulation and pregnancy outcomes. This led her to want to become a high risk pregnancy specialist and trauma professional.

High risk pregnancy specialists (not MFM's) provide mind-body support in relation to nervous system regulation. They can help before, during, and after pregnancy, to retain a resilient healthy nervous system, which can help keep the rest of the body health and safe. Pregnancy, labor, and delivery have the potential to lead to and cause the experience of trauma, due to perceiveing yourself or your child might be in danger, and then we can get stuck in survival mode. When you have a preemie, this can lead to the perception of danger, which can lead to the experience of trauma for the parents. Then there are triggers in our lives that continue to make us feel unsafe. Having a child with ongoing medical conditions can also lead the parent to experience feelings of trauma. This is because everything starts to pile on top of each other, and there are lots of unknowns and things that cannot be predicted. Uncertainty can lead us to feel like we are experiencing danger.

Symptoms of trauma can include flashbacks and nightmares, but also possibly things like crying out of nowhere and feeling all of a sudden overwhelmed, having a hard time settling into being happy, and getting really angry out of nowhere. Sometimes this can present as a sudden chronic illness. Parijat discussed "conventional wisdom" that doesn't work. Parijat noted that it is important to retrain the nervous system to return to baseline. She noted that types of professionals that could be helpful are "trauma trained," including but not limited to: psychologists, yoga instructors, pilates instructors, somatic experiencing practitioners, and EMDR therapists. The "right" type of person differs with each individual. To find which might be right for you, educate yourself and look into these different practices and see what makes the most sense to you. Mindfulness can also be really helpful to allow your body to adjust to being still. An easy way to start doing that is to start by noticing the basics, like thirst and hunger.

Links: Website Pregnancy Brain Healing Hearts Facebook Instagram Delivering Miracles Podcast

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 39: Writing Your Special Needs Journey With Guest Anne Fricke

In this episode, we discuss how writing can help parents in the journey of raising children with special needs. Writing and storytelling has long been a helpful part of life for guest Anne Fricke. She started doing a lot more writing, through her blog, shortly after her daughter, Freya, was born with Prader Willie Syndrome. After making a different podcast, her blog led into her creating a special needs parenting podcast called Walking With Freya. Four to five years ago, Anne started reading her poetry out loud to an audience, which was really meaningful and touching to the audience. Shortly after, she started her podcast, which has been inspiring and informative to others in her community. Writing can be a helpful coping process and a way to help guide your special needs journey. Anne also started Storyteller night in her town, which has been very powerful for her and those in attendance. Writing became so beneficial for her, that she chose to create a journal for other special needs parents, where she provide prompts and breaks it down into different aspects of the special needs journey. As she was creating the journal, she found that when she was writing, major aspects of her journey started to pop up that she found she needed to process. She found that this often became the case during her writing, which was very powerful to her.

In the special needs journey, writing can help us clear our heads and figure out where to begin. Writing can also be a release or can clarify the experiences that we had. It can also remind us of things that we used to do that worked, but that we may have forgotten about. Writing also helps keep our thoughts in order. Writing regularly makes the whole process easier. If you don't know what you need to write about, start writing about your day or pick a sentence and keep rewriting it until something else comes out. Using quote can be really inspiring. Anne also joined a writing group, which has been inspiring to her. She learned through this process that sharing your story is important. She also recommends reaching out to your local community to find and gain support and connect with others.

Links: Podcast: Walking With Freya Website There Is Joy To Be Found Here; a writing journal for parents of children with special needs Instagram Good Reads Nonviolent Communications Move Play Thrive A Mother's Rest

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group!

Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 38: Medical Moms of NICU With Guest Tanisha Burke-Wormley

In this episode, we discuss NICU stays, navigating complex medical systems, and NICU PSTD. Tanisha Burke-Wormley had a very long and complex experience with the NICU system. At 20 weeks pregnant, she found out that her son had urinary tract blockages and chronic kidney disease, and she had minimal amniotic fluid. She was told that if her son survived (which they weren't sure that he would), he would need a long NICU stay. They traveled to Ohio to get prenatal care for her son. They did fetal care intervention, meaning they placed artificial amniotic fluid inside her. She also needed fetal care surgery to get a shunt in her son's kidney to drain his kidney and alleviate the pressure. She also needed steroid shots twice. Before her son was born, she needed to be in the hospital for several months. Her son was born at almost 37 weeks. Once he was born, he was taken immediately to the NICU because he needed respiratory intervention and treatment for his lungs and kidneys. The NICU stay was very overwhelming for Tanisha and her husband. She felt she was missing out on the baby milestones and experiences and felt that the NICU nurses were being more of a mom to her son than she was.

Being at the Ronald McDonald house helped her feel a sense of community and feel that she wasn't alone. The Ronald McDonald house provided games, videos, board games, live entertainment, meals, tickets for activities around the area, and gifts, as well as a place to stay. Tanisha stayed with her son in the NICU over the holidays and Ronald McDonald house had Christmas trees, Santa, and Christmas carols. They also provide toys and activities for the children who are staying there. Child Life also helped her to cope. They provided activities to help celebrate the child's NICU milestones, posted pictures of her child, personalized his space, provided toys, provided music therapy, helped Tanisha find ways to bond with her child, made collages of her child from his stay, craft days for parents to get together and make crafts for their children. Social media helped her slightly to cope, but was a bit overwhelming, as some people were providing too much sad news. She was also able to talk to her husband and really bond with him. Care conferences with all of his specialty doctors were also very helpful, since her doctors were captive and she could get all the information she needed from them all at one time. Her son required 10 surgeries prior to returning home. Tanisha felt that she experienced what she terms "NICU PTSD" from seeing her son so sick and having had so many surgeries, and experieincing trauma during his NICU stay. He was sent home from the NICU twice and was rushed right back to the ER for severe medical problems. She started being better able to cope with the PTSD once her son was getting healthier and was home for a full year. To help her coach, she used the NICU pictures and wrote down her emotions from the time when she was in the NICU. Networking on social media helped, as did attending the NICU birthday party and seeing the other moms with whom she traveled her NICU journey.

To manage the complex medical community, it was helpful for her to use the binder from Kangaroo Kids Pouch CLT to navigate all of the information she had. Tubie Friends was also helpful, because she was provided a build-a-bear type stuffed animal which had the same tubes as the children have. Card For Kids was also helpful to uplift her and her son. She decided to do home dialysis, which would be easier on her son's body and minimize additional appointments outside of the home. Having time to speak with the NICU residents was helpful, as they were great resources. Her home health nurse helps to cut down on extra appointments, as they can do labs and bloodwork in their home. She found the right doctors by watching the doctors in the NICU to see which doctors she liked the most. Jaleel, her son, was also able to obtain some in-home therapies. She recommends that if you have a long commute to the different doctors, to be open about that and ask if they can have multiple appointments on the same day. Working with a social worker to find financial resources and networking with other moms can be really helpful to help manage complex medical conditions.

Links: Tanisha Burke-Wormley Facebook Page Medical Moms of NICU Facebook Group Instagram Linked In Ronald McDonald House Child Life Tubie Friends Child Life On Call Kangaroo Kids Kangaroo Kids Pouch CLT Cards For Kids

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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

Episode 37: Having Autism Spectrum Disorder in The Entertainment Industry With Guest Trey Olds

In this episode, we discuss being in the entertainment industry while also having autism spectrum disorder. Guest Trey Olds has ASD, is 19-years-old, and broke into the industry at age 13. He has had his own radio show, and also has been a DJ, writer, and actor. Trey broke into the entertainment industry at the recommendation of friends, who thought he would make a voice actor. He has progressed through different parts of the industry. Trey discusses further how he got into each area of the entertainment industry. Practicing and hard work help Trey to get more comfortable in the industry and to improve his performance and writing. He mentioned that there are ups and downs in every area of the business, so persistence is key. Having ASD was initially a challenge for him in the industry as some agents wouldn't speak to him due to him having the disorder. He was also very shy. However, he adapted and practiced to help him get through being so shy. He also found that going out and meeting new people helped him to network and find new opportunities. Sometimes, he was able to use ASD to his advantage, as occasionally it got him more interviews on his radio shows. Some acting roles came his way specifically because he had autism. He found that staying positive helped him progress through this industry. He also found that he could learn from failure. He recommends that folks be persistent, but nice and not pushy or rude. Having a thick skin can also help. Make sure to have a backup plan or a regular job to keep a steady income. And always be respectful and nice to your fans.

Links: Trey's YouTube Channel Facebook Actors of The Past Trey Olds Radio Show

Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook and join our parent group! Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5 star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast.

Show Music: 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)

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