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

In this episode, we discuss why we renamed our show from FUBAR: Surviving Parenthood With Special Needs Kids to Thriving in The Midst Of Chaos. 

Episode 19: Creating A Community With Guest Stacey Simms

In this episode, Stacey Simms discusses her experience navigating the Type 1 Diabetes world and finding a community. Stacey discusses the difference between Type 1 and Type 2 Diabetes and the importance of getting an accurate diagnosis. When her son was almost 2, his personality changed (irritability and tantrums), he would become sleepy at unusual times, he started urinating more frequently, and was drinking a lot more water. Stacey became concerned. Stacey discussed the process for her son to get diagnosed. She noted that they coped relatively well with the nitty gritty of managing diabetes when he was young, as her son was laid back about having to take insulin shots. However, it was difficult to figure out how many carbs were in homemade foods, and she never knew what he would actually eat, as toddlers are bonkers. Stacey discussed struggles her son experienced, such as not preferring to talk with his friends about diabetes, blood sugars fluctuating frequently, and having to be on top of his blood sugars at all times. Currently, he is navigating how to manage diabetes during puberty, due to hormonal fluctuations. At the time, she was a health news reporter, and met others in similar situations through summits and meetings while she was working. As time passed, she met more parents of children with Diabetes through school (and the school nurse), and posting meetings on Facebook. Starting a Facebook group helped grow the community in her area and connect families. Finding her community helped her to realize some fears were unjustified and helped her find support and helpful ways to cope. Her son currently copes relatively well, due to having a great support network and having attended camp for children who have Diabetes. She recommends that to create a community, start a Facebook group, talk to your child's school nurse, schedule a dinner or coffee date with other parents, keep meetup locations and activities simple, attend charity walks, set small goals, send your child to camps for children with that diagnosis.

Links: Stacey Simms: https://www.diabetes-connections.com https://www.staceysimms.com Facebook  Twitter  Instagram 

JDRF

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 18: Juggling Everything with Guest Susan Scott

In this episode, we discuss navigating school, insurance, and therapies. Our guest Susan Scott discussed her son's journey finding school. Her experience was generally smooth sailing, and her son was provided with therapies in an understanding and inclusive setting. The only hiccup was when he was in daycare and the teachers left him behind in the classroom all by himself in the dark. Unfortunately, DCFS had to be called in to solve the situation. This year, he started in the public system, and his IEP was implemented. In order to cope with IEP and teacher meetings, she always came into meetings with an open mind and a kind heart, and left the boxing gloves at home. Her ex-husband had difficulty believing that their son had autism, which made navigating school and therapy services and decisions about them more difficult. This also led to poor communication in the relationship, which ultimately led to the dissolution of their marriage. Work tended to be an outlet for her, as was navigating services, as it took her out of other more stressful situations.

Regarding insurance, Susan's experience was a whirlwind. When her son was first diagnosed, their insurance deemed ABA to be educational and refused to cover ABA therapy, so Susan had to pay for ABA out of pocket. She ended up deciding to move back to her home state, because insurance mandates were more autism-friendly. She went from paying $3,000 a week for ABA out of pocket to paying $100 a week. Later on, she found another job, which didn't require any copays for ABA. She had told her employer that in order to maintain her employment at her job, her insurance needed to cover ABA or she would not be able to work there anymore. Time is of the essence with these services. However, she still spent hour upon hour on the phone with insurance begging for services and adequate coverage for her son. She also had trouble finding in-network providers, as provider lists were outdated or minimal. She coped with the stress by working and talking with family and friends.

As far as therapies, Susan's son is currently in occupational therapy at school with plans to work more on sensory processing issues and eating in the upcoming year. She has struggled with making sure the service providers were able to provide sufficient hours, due to very very long waiting lists or finding people who didn't have sufficient education/training/experience with autism. It was also difficult to manage ABA therapy codes. Susan struggled to cope with navigation of therapies. She would scream into a pillow and take long showers, but she otherwise tried to take it one day at a time. Currently, for self-care, Susan watches movies and TV shows, reads books, and texts friends.

Links: My Autism Tribe Website My Autism Tribe Podcast  Facebook: My Autism Tribe                  Susan Scott Twitter  Instagram 

Youtube

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 17: Communicating Our Plight With Guest Jelisa Scott

In this episode, we discuss communication with the outside world and how to cope with challenging behaviors. Our guest, Jelisa Scott noted that the teacher in our children's classrooms often experience the following struggles: not knowing your child as well as you do or what the child's triggers are, not having sufficient resources available, and having large class sizes even in special needs classes. She recommends that to combat these issues, find out what class your child will be in well before the year starts, email the teacher well in advance to communicate with them, try to meet with the teacher before school, and attend meetings and back to school nights. She also recommends that you send the teacher a one pager about your child (what their diagnosis is, strengths, what your child needs help with, and strategies that work). Your BCBA can speak with the teacher on your behalf or can assist you in school meetings. However, it is important to be open to feedback if teacher says a strategy doesn't work in the school, even if it does work in the home.

In the community, we might experience judgement/misunderstanding of what is happening with your child and a lack of understanding of your child's disability. It can help to let them know the child needs patience and/or to educate them on the symptoms of your child's diagnosis. However, pick your battles. You can ask them to mind their business, or even make a card saying what is going on and to kindly leave you the hell alone if they are not willing to help.

With family, bide your time. Share the knowledge that you have learned, tell them what is useful when interacting with your child, but also give them calls of action for what to do when a problem occurs, as well as a backup person to call if a parent is unavailable. If they continue to treat you or your child poorly, consider if you want to distance yourself from that person. If someone says the child is behaving in that way because you are a bad parent, ask them to define what a better parent is and ask them if they would live up to those standards.

When it comes to common issues parents face in children with autism specifically, parent experience isolation, so much planning, and loss of sexuality. For Jelisa, the most common challenging issues are aggression and screaming. For her, the most challenging issue is noncompliance. Jelisa recommended utilizing support groups, going on date nights, realizing that perfection is not expected, taking moments for yourself without your child, taking 15 minutes a day to do something you enjoy, and/or write in a journal. Couples counseling can also be helpful, but is not always covered by insurance. It could be useful to find a therapist through a local university graduate program.

Links: Guest Speaker Jelisa Scott Facebook: ABA Sensei Instagram: ABA Sensei Be Better Podcast Nap Ministry: thenapministry

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, and 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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 16: Compassion Fatigue with Guest Jolene Philo

In this episode, we discuss compassion fatigue in the caregiver, including symptoms and ways to combat compassion fatigue. Compassion fatigue, or secondary trauma, can occur over the course of caregiving a child with special needs. Symptoms may include isolation, substance abuse, compulsive behaviors, poor self-care, sadness, fatigue, being preoccupied, poor sleep, decreased cognitive abilities, low self-worth, loss of hope and meaning, anger, irritability, and poor personal relationships. Jolene, our guest, experienced stress, anxiety/worry, and isolation when her son was younger. At her bests moments, she would cope by talking to others and crying. At her worst moments, she would blame herself and focus strongly on work. The hardest aspect of compassion fatigue for her was uncertainty/lack of control. Jolene discusses crises of faith and how to work through it. Crises of faith can exacerbate compassion fatigue if the issues aren't worked through adequately. However, spirituality itself can actually reduce symptoms of compassion fatigue. When she was experiencing compassion fatigue, mindfulness as a concept did not exist yet. However, she would use journaling, writing about what she was grateful for, prayer, a bible study group, and taking some time alone every day. The best ways to reduced compassion fatigue include meditation, vacations, therapy, hobbies, regular exercise, good sleep, eating well, drinking water, and cutting out alcohol. However, this is really hard to do when you are a parent of a child with special needs. Therefore, you have to be sneaky and clever about how you take care of yourself, otherwise, you might experience unpleasant health problems. Jolene recommends taking a few minutes to yourself every day, considering a staycation, counting your blessings, finding respite care, finding additional help with caring for the child, psychotherapy via telehealth, googling exercise routines that fit your needs, exercising with your kids, and cooking easy meals. Her favorite tips are finding a positive friend, make a list of things that other people can do to help you, and curating hobbies.

Links: Different Dream Compassion Fatigue Blog Post 1

Compassion Fatigue Blog Post 2 Lazy Genius Collective Little Stories For Tiny People

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 15: School, IEPs, and Teachers, Oh My with Guest Brandon Scherr

In this episode, we discuss navigating school with young children who have special needs. Our special guest Brandon Scherr has a 6-year-old son who attends public school. However, the teacher to which his son was assigned has not been responsive to Brandon's concerns, to assisting with the IEP, to following the IEP, or even to meeting with Brandon and his wife. Although his son likes school, due to dysgraphia, his classmates make fun of him, which causes a lot of tension between the children in the classroom. Brandon has tried repeatedly to get an IEP set up for his son, although no one on the IEP team has responded to his requests, the IEP has still not been finalized halfway through the school year, and the IEP does not include most of the requested accommodations. Additionally, Brandon has not been provided with the information about what services his son is receiving and when. Moreover, the evaluation that the school completed was a 15 minute observation done over the lunch hour. In the episode, Brandon further discusses the disconnect between his expectations of the school and his child and the school's expectation of the school and his son. Links: WrightsLaw Parents' Place of Maryland Early Intervention

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 2019 Jessica and Lewis Temple

Episode 14:No Rest For The Weary

In this episode, we talk about sleep. Sleep routines, naps, and exhaustion. We started a sleep routine for our oldest at 3 months. At 16 months, our second child still doesn't have a sleep routine. We just throw him in bed. Our oldest has a very intricate sleep routine, although it generally works for him and for us. However, it is a 2 hour sleep routine, made more complicated by physical and occupational therapy exercises and behavior therapy exercises. Dinner and bath take forever, and getting him dressed is physically painful. Our routines generally work, although we wish we had more of a routine for our youngest, and a shorter routine for our oldest. And we would like the routines to not be physically painful. Our children generally do nap and sleep most nights. However, we don't. We wake up a ton and have terrible sleep quality. We are working on fixing that, but it is easier said than done.

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 2019 Jessica and Lewis Temple

Episode 13: Treasures of Our Children In this episode, we discuss all of the wonderful aspects of parenting children with special needs (SNKs). Before having my SNKs, we were always stuck in the future or the past, and were anxious people. But now, we don't have that choice. If we are to be there for our children, we have to be in the moment, which really reduces our stress levels. We appreciate the things they do so much more than we would have, and we never take anything for granted. We know that every new task they complete or every new skill they acquire is a blessing and a miracle. As an adult, the world is a big, bad, scary place. But as a SNK, the world is brand new, exciting, different. We get to be kids again and see the world from a perspective that we never had, and experience our favorite things again, in a totally new and exciting way. In certain ways, there is less pressure placed on us, because this provides us the opportunity not to impose on our children the “need” to be perfect, to be the best at everything, to obtain the highest score, to get into the Ivy league schools. We can let our children be who they are, allow them the luxury of enjoying life, instead of slaving away at life. We also have a chance to find a less judgmental community than the “typical child” community. With less competing comes likeminded and open individuals to enjoy spending time with. We have the chance to appreciate a different sense of humor, to see how clever our children can be, and to learn all the patience in the world. We can allow our children to be themselves, rather than who we try to mold them to be. Since our son scripts, we have the rare chance to peek into his day and see what went on in his world, as he is unable to tell us otherwise. So in sum, let your child and his/her world-view guide you. You will be very pleased as to where it may take you.

Links: Choices

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: Lion Roar: Lion Roar by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 2019 Jessica and Lewis Temple

Episode 12: I Do I Do I Do Believe in Self Care

In this episode, we discuss the awesome parts of self-care. Before kids, we had tons and tons of really varied hobbies. We were actually, like, cool, or semi-cool people. Also, Lewis was, and always has been, a squirrel. But since having children, especially ones with special needs, all of our self-care strategies fell by the wayside. For Jessica, it is hard to engage in more self-care due to feeling guilt about taking time for herself, perceiving that she is stealing time from the kids. There are so many ways we would like to start caring for ourselves, from the awesome stuff like getting regular massages, to cleaning up our hellhole of a house. There are so many things we would like to start doing again. Like massages, physical therapy, meditation, using lotions, engaging in hobbies, taking walks, reading, and spending time with each other. And of course, clean and organize the house.

Yeah, right. It would be lovely to take breaks, cook, and taste food again, as well as wear clean, fitting, and matching clothes. We don’t feel that there should be a distinction between self-care vs luxury, because it is so important to take care of ourselves, as if we don’t, there will not be anyone to take care of the children. Plus, what is necessary for one person might be a totally different story for someone else. After a discussion, we felt willing to spend money on self-care, as long as money is available at the time, although Jessica still has trouble being willing to spend time on self-care. Self-care is absolutely do-able, no matter the situation. The tools don’t have to be lengthy or expensive. They can be simple and free tools, like taking short breaks throughout the day, doing yoga poses when needed, tasting your food, and giving yourself a massage. We don’t currently spend a lot of time on self-care, but we are working toward spending more time for ourselves. Because of course it makes a difference, to both our health and our mood! So get out there, and start caring for yourself!!

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: Lion Roar: "Lion Roar" by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 2019 Jessica and Lewis Temple

Episode 11: Back to Basics

In this episode, we discuss the basics of self-care, such as showering, sleeping, eating, brushing your hair, flossing your teeth, attempting to look like you didn't just wake up 5 minutes ago... As a special needs parent, it is really difficult to find time to do all of these things, because they seem so unimportant compared to the needs of the child, and it can feel like these activities are taking precious time away from our children. It can feel like those things are a waste of time, such as flossing or brushing your hair, so that it isn't a ball of frizz. Getting enough sleep can be tough. Our children still don't sleep all the way through the night, so even though we typically get in bed at a reasonable time, we haven't slept through the night in over 4 years. Chronic pain doesn't help any with sleep quality. Eating is a really difficult issue. Sometimes, getting enough food into our bellies is the hard part, especially if we have a really hard day. Other days, it is harder to make sure we are eating healthfully. Or to even have the desire or willingness to attempt to make good food choices. Or less bad food choices. Sometimes, we are so stressed and so strapped for time, eating junk seems like the only possibility for self-care that day. Attempting an actual hairstyle or doing makeup just seems so frivolous. And trying not to look like a mess when you can't afford (or find in your home) clothes that fit, non-maternity clothes, or clothes that didn't just have four dirty hands wipe junk all over you seem borderline impossible. Even though these are basics of modern human existence, it is very time consuming. Taking care of our health seems unfeasible. As we get older, everything on our body just seems to fall apart and it is already insanely hard to make sure the kids get the therapies and appointments and treatment they need, so it can feel like our health is less important or just not necessary. However, we forget that if we aren't around and healthy enough to take care of our children, who will? Jessica discusses working with a life coach to set small goals and spending a few more minutes each day on basic self-care strategies. It is very difficult, but little steps make a world of difference.

Links: Last Podcast On The Left

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: Lion Roar: "Lion Roar" by Iwan Gabovitch under CC-BY 3.0 License (www.freesound.org) 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 2019 Jessica and Lewis Temple