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

Episode 66: Fetal Alcohol Spectrum Disorder With Guest Natalie Vecchione

In this episode, we discuss the ins and outs of Fetal Alcohol Spectrum Disorder. Guest Natalie Vecchione has an adopted son with FASD. Although it was not diagnosed at the time, he began showing signs of FASD very early on. Symptoms worsened around age 2, with symptoms such as additional sensory needs, attachment difficulties, speech regressions, delayed milestones, and sleep impairments. He started early intervention at an early age, but as he grew older, he no longer qualified for services. He started falling behind his peers at school. Her son has variable memory impairments, which change on a daily basis. As he grew, he also began exhibiting behavior difficulties, exacerbated by puberty.

Finding a support group for parents of children with FASD was very helpful for Natalie. Natalie found that doctors never mentioned FASD unless Natalie did, making it difficult to eventually find a diagnosis for her son. Once she got a diagnosis, she began to look into trainings about FASD. She found that brain based or neurobehavioral approaches worked best and were most effective for her son. She found that mental health first aid training was incredibly helpful. Executive functioning of is one main cognitive areas that is impaired in those with FASD. This can affect their developmental age, which is often lower than their chronological age.

Natalie discusses that there are different diagnoses under the FASD umbrella, but it is a whole body disorder. With fetal alcohol syndrome, a child might have certain facial features, shorter stature, smaller head circumference, sensory and mobility issues, and other medical issues. FASD is often very underdiagnosed. Common FASD symptoms include dysmaturity as children get older, variable memory impairments, hyperactivity, executive dysfunction, having difficulty with abstract thinking, reading difficulty, math difficulty, difficulty predicting outcomes, sensory difficulty, slower processing speed (auditory or visual), impulsivity, reduced social skills, anxiety, self-harm, and low self-esteem.

Symptoms can arise at any time during childhood. If parents see these signs in their children, parents should seek out an FASD clinic or a state or national FASD organization. For therapies, occupational and speech therapy tend to be most useful. Natalie also recommends that parents get neurobehavioral or brain based training. Accommodations are key for children with FASD. It is key to focus on the strengths of that child. Accommodations could include visual and tactile cues, extra time, extra emotional support, extra support, minimizing florescent lights, and/or keeping directions short and simple. It is incredibly important to create supports for these children.

Links:

Natalie's Links:

Website:

"FASD Hope" Podcast (on Podbean, Spotify and most platforms)

Instagram

Facebook

Pinterest

Natalie Vecchione [email protected] or [email protected]

Helpful Resources:

Homeschool Legal Defense Organization

CDC information about FASD-

FASD Book- "Trying Differently Rather Than Harder" by Diane Malbin, MSW

FASD Organizations-

Proof Alliance

National Organization of FAS

Homeschooling with Special Needs-

Facebook Groups

Special Needs Homeschooling

Special Needs Homeschool

Homeschooling the FASD Way- A Global Community

Blue Collar Homeschool, Special Needs Homeschooling

Special Needs Homeschooling High School and Beyond

Websites For Homeschooling

Learn Differently

Special Education Homeschool

Homeschool.com

Mental Health First Aid-

Training in Neurobehavioral Approach to parenting / caring for a child with an FASD or Brain Based Diagnosis-

The CDC offers fact sheets-

Training

Aubrey Page, FASD Educator & Trainer

Email us if you have any questions or ideas!

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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 65: Mindful Mama Mindful Child With Guest Josephine Atluri

In this episode, we discuss surviving quarantine with kids, while keeping your mind and relationships intact. Guest Josephine Atluri discusses tips to survive quarantine. She recommends giving yourself space and being flexible and kind to yourself. She suggests allowing yourself to feel your feelings. She reminds us that COVID is a marathon and not a sprint, and we can to cope differently than we initially did at the beginning. She highly recommends frequently utilizing breathing techniques, including box breathing, the ocean breath, or matching your inhale length to your exhale length, increasing by a second as often as you can. This helps change your moment from something negative to something positive. These are strategies that are great not only for parents, but also for kids of almost any age!

For parents who don't get breaks during the day, during online learning, it is helpful to get creative and find ways to find short breaks, whether to do breathing exercises, using an online meditation app, or practicing affirmations. Jessica recommends doodling or using watercolor pencils or other short creative activities.

Quarantine has also been hard on marriage and relationships. To help strengthen relationships, Josephine recommends taking a date day/night/afternoon/hour and checking in about how each other's days went, ideally once per week. Also, talking with friends, taking a few minutes alone, and doing mindfulness to tune into how you are feeling and also how your spouse is feeling.

For mindfulness for parents, Josephine recommends breathing techniques, affirmations, gratitude practices, and a body scan. Josephine offers guided meditation on her website too (see below). When getting started with meditation, start with short sessions, tie it to an existing ritual, and be flexible and kind to yourself.

To help your child engage in meditation, start modeling meditation, place importance of self-care for yourself, show them how you handle stress and overwhelm, make a gratitude journal, use affirmations, use chimes, follow audio guided meditations, engage in breathing exercises, do meditations with your children, and do walking meditations.

Links:

Josephine's Web

The Mindful Mama Moments

Instagram

Responding to Life Podcast

Headspace

Calm

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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 64: Raising a Child With Down's Syndrome Into Adulthood With Guest Yvonne Pierre

In this episode, we discuss raising a child with Down's Syndrome into adulthood. Guest Yvonne Pierre's youngest son, Zyon, was diagnosed with Down's Syndrome shortly after he was born. He initially had digestive issues and the nurses went to evaluate him and suspected he had Downs Syndrome. This was confirmed later that day. Yvonne was initially devastated by the news, as she didn't know anything about the condition. More than anything, she was wondering if her child was going to be ok. She is an open book, so she was open with her family and friends about her son's condition. She also relied heavily on her faith and her love of her child. Everyone she told reacted in a different way. Some researched the conditions, some asked questions, and some reacted negatively.

She has found life with her son a blessing. She looks at everything as life lessons, such as how is she supposed to grow from this. Zyon was born 5 weeks early and has a mild heart murmur, which seems to have resolved. Speech has been Zyon's biggest challenge, although he still struggles with digestive and skin issues. Zyon has a high tolerance for pain, so Yvonne needs to be really aware in order to pick up his cues to see if he is in pain.

His school experience has been varied and was dependent on the quality of the teachers. Due to teacher issues, Yvonne homeschooled Zyon for a year. Currently, Zyon has been transitioning to adulthood. He is wanting his privacy, starting to care what people think, and is starting to like girls. It has been challenging for Yvonne to know how to discuss dating and sex with her son. She has also been struggling to figure out how to discuss driving with him. She continues to work with her son on safety in the community. They are working on finding Zyon a job that maximizes his talents.

Yvonne has experienced some isolation throughout parenthood, but she has made sure everyone in her family is included in the community, which has helped. For self-care, she meditates, eats well, exercises together as a family, and prays as a family. She also works on having a positive outlook, even when things get hard. She recommends networking with other parents in your community and getting involved.

Links:

Yvonne's Website

Instagram

Facebook

Twitter

Special olympics

Parent to parent

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!

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 63: Overcoming Special Needs Stigma with Guest Leah Moore

In this episode, we discuss self-care, coping, stigma, advocacy, and helpful teaching techniques that parents can use at home. Guest Leah Moore has 3 children with different needs. Her daughter Jordan was born with Cri Du Chat Syndrome. She began to lag behind developmentally, which led Leah to looking for a diagnosis for Jordan. Symptoms of this disorder can include a kitten-like cry, microcephaly, cognitive and developmental delays, hypotonia, require feeding tubes, and some children are unable to walk or talk. However, Jordan walks and talks but has some cognitive and social challenges. She also has epilepsy and some medical challenges.

Due to her husband being a carrier for Cri Du Chat Syndrome, Leah did IVF, and ended up having twins. One of her twins, Austin, had hydrocephalus at birth, although he never required neurosurgery. He does have learning disabilities, but is doing well. Her other twin, Oliver, started developing some spots on his skin at one point. His doctors were concerned that he had leukemia, so he had numerous procedures and tests. He was later instead diagnosed with ITP, idiopathic thrombocytopenia. He is generally healthy, but has a tendency to bleed more than other children would.

Leah found that she felt isolated during Jordan's early years, as they were figuring out how to navigate the different needs. Leah also found it terrifying to manage all the needs at the same time. They learned to focus on the children as they were, and not focus on the appointments, and conditions, and paperwork that came with everything. She tries to just focus on who they are as people. When she tried to stop the sadness she was experiencing, she found that she squashed the joy, too. She wanted to remember that even in the worst time, there was still beautiful things happening every day. She found that reaching out to others and sharing her story was incredibly helpful for her. She uses writing as a huge outlet. She and her husband also take turns taking breaks. Keeping everything afloat is a challenge, but having a strong support system, starting psychotherapy, finding enjoyable hobbies, and relying on those tools when she needs them really help. She learned that she can't be all things at all times. She struggled with finding her community, but she found them within social media, the Cri Du Chat community, and at conferences. She also connected with parents through her special education PTA and through her website.

During crazy times, it can be helpful to control what can be controlled. Leah works hard on basic self-care, like dressing fully for the day or dressing up, which really helps to boost her mood. She noticed that any one thing doesn't work for everyone. Each person is an individual. She noticed that finding tiny ways to care for herself works best. She works hard to be mindful during her day.

Leah deals with stigma by educating others. She recommends reading books about differences and disabilities to help lessen stigma.

Through teaching an adaptive theater class, Leah learned the following:

• Use structure and visual calendars. Make sure your child knows what his/her days look like.
• Be purposeful with your transitions. Be detailed about what will happen. Provide choice within structure. Have transitions look the same each time, when possible.
• Pause and notice. Notice what is working and when there is an opportunity for more learning.
• Yes and. Instead of focusing on "no," say yes to the direction the child is leading you, within reason.
• Every single person has a voice. Each child has an opinion about something.

Links:

Website

Email

Twitter

Instagram

Wolf and Friends

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

We also have a Facebook Page with updates about our podcast!

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 62: Coping With Loss While Raising a Special Needs Child With Guest LaTanya Sothern

In this episode, we discuss navigating loss, while also raising a child with special needs. LaTanya Sothern's oldest son, Tre, was born with autism and a musculoskeletal disorder that required numerous surgeries. LaTanya discusses that she had 2 first trimester miscarriages before she gave birth to her oldest son. She got pregnant again when Tre was 3 years old. At that time, Tre always had numerous therapies and had to go to the hospital for appointments frequently. He was also receiving services through Infants and Toddlers. During LaTanya's second trimester, the perinatologist began noticing fetal anomalies in the babies. The baby was later diagnosed with Friends Syndrome. He had a diaphragmatic hernia and a cyst on the back of his head, both of which could be fatal. At 6 months gestation, LaTanya was given the option of terminating the birth, or having a traditional birth or a C-section. She chose not to terminate the pregnancy and switched obstetricians to a doctor who was across the street from the NICU hospital. She went into birth at 37 weeks. After Jay Raphael was born, he went straight to the NICU hospital. The hospital tried to keep his oxygen levels up, but he was only able to breathe with someone manually pumping air into his lungs, so the family decided it didn't make sense to continue rescue efforts. Due to having just had a c-section, LaTanya was not allowed to leave the hospital right after surgery. However, the other hospital allowed her husband to check the baby out of the hospital so he could bring the baby to her. She was able to hold her baby for a few minutes before he passed.

During her time with her son, she was still under the influence of medications, so it didn't hit her that she had lost her baby until late that night. Having a strong faith-based community of support really helped her to cope. At first, she felt like she lost herself. However, right before she had her loss, Tre had a prolonged hospital stay due to RSV and was in the ICU for 2 weeks. Then, her grandmother passed away. Then a month later, Tre needed major back surgery. So LaTanya had to focus heavily on Tre. She also had to return to work pretty quickly. This all gave her space to not dwell too much on her loss as much as she could have.

Additionally, Tre had lots of therapies and recovery time. Tre was making so many strides, that LaTanya spent all of her focus on Tre. Faith helped LaTanya a lot in coping with her loss. Tre also had a lot of help and people looking out for him. However, she still felt isolated, as there weren't a lot of resources for her at the time. She did a lot of questioning of her body. She later got together with friends and wrote a book about their losses. This helped her to realize that everyone processes loss differently.

Victory Through The Rainbow Sothern Education Solutions The Birth of An Advocate Autism Speaks Understood.org Twitter 1 Twitter 2 Facebook Instagram

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 61: Transition To Adulthood Part 2: Employment, Socialization, Self-Regulation, and Daily Living Skills With Guest Dr. Matt Segall

In this episode, returning guest Dr. Mall Segall discusses the nitty-gritty of the transition to adulthood in teens and young adults with autism, including employment, socialization, self-regulation, and daily living skills. When Dr. Segall works with his clients, who are adolescents and young adults with autism, before he sets goals with the client and works to meet those goals, he takes into account their age, developmental levels, the level of support needed, and who the client actually is (parent or child). He also takes into account the context/setting of the goals, such as the workplace, school-based, personal health, and wellness/at home. If he is working with the young adult, it is really important that the individual participates in goal setting, to have buy-in, or the goal is much less likely to be reached. Dr. Segall finds that the person-centered approach works best, where the young adult is at the center of treatment and they discuss that person's hopes, dreams, and goals. what is meaningful to them. That helps them to determine the skills and contexts they would like to work on. However, there can be some generalizations among skills and settings. The family perspective can also help guide the goals and treatment. Sometimes, going with the easiest goals that have the most buy-in and motivation can help the teen get the most out of treatment. This can help open up options for treatment in the long run.

One goal of huge importance is self-awareness especially if the client is not sure what goal to set. This begins with being aware of their diagnosis, psychoeducation about symptoms, discussing the daily challenges the client experiences due to having autism spectrum disorder (ASD), talking about their strengths, and even having the client participate in their own IEP meetings. Dr. Segall also will discuss how the person sees the world and how the world might see the client. They also discuss what strategies can help them. Parents can help the young adult work toward these goals by assisting with finding a social support network, finding things the young adult loves to do, and helping set up visual supports.

Emotion regulation is very important as well. We often teach the children emotions out of context, which can be ineffective. It is important to teach emotions and emotion regulation in the context in which they are most relevant. Emotional regulation and social interactions work hand in hand. Often, individuals are most dysregulated in experiences with other people, as social interactions can be emotionally provocative for those on the spectrum. A lot of times, social skills are present, but emotions are evoked. Dr. Segall helps the young adult to see if we change the environment or instead work on emotional or social coping skills. This would help them think about the context that they are in and then pull from their bank of toolboxes. Instead of appropriate and inappropriate behaviors, Dr. Segall recommends labeling behaviors as expected or unexpected behaviors, as what is expected is situational. This can help one discuss expected behaviors in certain situations, which can bring more awareness into a situation, and the young adult can see if they need to bring in more emotional regulation, behavioral regulation, or a strategy that lets them succeed at a higher level in that context.

Regarding daily living skills, Dr. Segall finds that younger clients are often not interested in working on these. He noted that the key is to start working on these goals young and build up to good habits and systems. It is useful to have family chore charts and rewards systems, then fade in new chores and goals or higher levels of independence. The earlier you start, the better habits we build in, and one can internalize responsibility and values. Parents can help by breaking down the tasks, using visual supports and lots of rewards, and modeling.

Social goals in young adults with autism can include focusing on developing interests that give access to peers, finding inclusive peers who are open to learning about diversity or other neurodiverse peers, and finding tasks they want to do to expand their social world. Sometimes a problem is not caused by a social skills deficit but that the person hasn't yet found the right place that "got it." Again, it can be helpful to teach expected and unexpected behaviors in different situations, then how to engage in those behaviors or be a self-advocate. The context of learning social skills is really important.

Employment is a huge area one might set goals in. To be successful at work, one needs to be aware of one's own behavior, have a plan, be organized, and have the stamina to engage in a workday and stay on task and complete tasks. Dr. Segall helps young adults plan and build routines, discover what the person would be interested in doing for a job, learn how to disclose about autism, and advocate in the workplace. He helps them learn how to ask for accommodations, which ones to ask for, and how to go about having these conversations. He often recommends that individuals look into autism-specific hiring initiatives, such as those through Microsoft or SAP. Regarding employment readiness, one can always find reasons they are not ready for employment. Dr. Segall instead recommends thinking about what opportunities will maximize one's strengths, talents, and abilities, where ASD challenges will least interfere, where challenges minimized, are where preferences are, and look there. His goals are to create as good a match as one can, know which supports one needs to put in place, and task a dignity of risk.

Links:

Emory Autism Center Education and Transition Services

Transition Tool Kit

The Peers Curriculum Social Thinking The Science of Making Friends ADA

The Advice Project Neurodiversity hub Getting Hired The Spectrum Careers Autism At Work Roundtable

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 60: Injustices Of Special Education For Dyslexia In The Time Of COVID With Guest Micki Boas

In this episode, we discuss dyslexia in the school system and distance learning for children with learning disabilities. Guest Micki Boas has two children with dyslexia. She was able to get her oldest son services through early intervention but Micki started noticing a larger problem once he started 1st grade in a charter school. They had him assessed and he was diagnosed with ADHD and dyslexia, but the school only provided 30 minutes of reading support a week. It took 4 years of fighting, 4 lawyers, and 4 different school formats to get her older son the services he needed.

Due to the injustice she found, she wrote a book called One In Five to help educate parents on the USA school systems and to provide actionable and useful ways to help support their child's education. There were three main tenants as to why the USA is in the education crisis that it is in:

1) Special education in the USA has been severely underfunded for 47 years.

2) There is a lack of early intervention. Most children are diagnosed with dyslexia years later than they should have been, putting them significantly behind in reading and education.

3) There is inadequate teacher training and not enough educators to work with students with dyslexia. They don't have to choose the system that is a best fit for your child, as long as they use a structured system.

Now, with COVID, teachers are being trained on virtual tools and not on reading programs or special education. IEPs are still required to be fully followed. However, the treatments or education may not 100% translate via tele formats. With Zoom, reading has been more challenging for children with dyslexia. A lot of parents have purchased homeschooling reading programs to use as an adjunct to what the child learns in school. A lot of schools are also doing small group reading, small breakout rooms, using listen-to-read stories, and drilling sight words to teach reading. Although people are not conducting screenings or assessments in person, Micki recommends that you still have your child screened now, if needed, rather than waiting for COVID to end, as waiting could push services off for a long time.

Links:

Website

One In Five

Linkedin

Simon & Schuster Author Page

Invisible Red Tape

Instagram

Email

Decoding Dyslexia

Baby Noggin

Dr. Nadine Gaab

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!

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 59: Sky Full Of Stars: Battling Murphy's Law in the Special Needs World With Guest Meg Apperson

In this episode, we discuss coping with life when everything that could go wrong, does go wrong. Guest Meg Apperson's daughter Avery was diagnosed with craniosynostosis during the latter part of Meg's pregnancy. They initially thought Meg had placenta previa and found this condition instead. Avery's skull was measuring several weeks behind the measurements of the rest of her body. Meg knew something was very wrong, although the nurse and doctor disagreed. They allowed her to see a specialist, who agreed with Meg that her daughter's condition was serious. After a few more tests, doctors found out that her daughter's condition was more severe than they had originally thought. This meant that not only was the skull and brain affected by this condition, but everything surrounding it could be as well. There could also be abnormalities in other areas of the body.

In order to prepare for Avery's birth, Meg did a ton of research. She wanted to be prepared for anything that she might experience after Avery was born. The unknowns started with the birth, as she and the doctors weren't sure what the safest type of birth would be for Avery. From the beginning, Meg listened to her intuition. With labor, she only had one contraction and came to the hospital, and two hours later, Avery was born. Had she not gone in when she did, her placental abruption would not have been found. Once Avery was born, there were so many unknowns as to what would work for treatment and what kinds of impairments she might have.

From the beginning, Avery had respiratory difficulties, so Meg only had a few short moments with Avery. Shortly after, Avery was transported to a hospital with a better-equipped NICU. Avery was in the NICU for 6 weeks before she went home. Avery made it 3 days at home before she decompensated and needed another NICU stay. She was home for another 10 days before she had to go back to the hospital. She required a g-tube early on, and a trach not too long after. Complications in the first year included hydrocephalus, feeding issues, respiratory failure, staph in her trach, eye problems, shunt malfunctions leading to a coma, and septic shock. She underwent cranial vault remodeling and other various cranial and brain surgeries. Doctors also found a Chiari Malformation. She coded frequently and required a ventilator. It was a long and painful ride for her and her family.

During every admission, doctors hemmed and hawed about what to do and there was never a consensus about anything. Doctors would never commit to causes or treatments of any complication. Doctors kept trying to delay treatments and surgeries, to the extreme detriment of Avery. Numerous times, she became more ill due to the inaction of the doctor. Due to this, poor Avery had numerous additional complications that never should have occurred. In order to save Avery's life, Meg stuck up for Avery and advocated very heavily for the care she felt Avery required to live. To add to all of this, while Avery was still sick, Meg found out that her son Macson had a serious heart defect and needed almost immediate surgery.

Meg found advocating for Avery very difficult at first because she dislikes confrontation. Over time, she learned to trust her instincts and she had done enough research to know she could stand up for her daughter. The more times she was right, the more confident she became. Meg has become an unbelievable and inspiring advocate for her daughter and through this, she has saved her daughter's life many times. Meg recommends doing research about your child's condition and ask every question you have. Write it down and ask all the questions, write the answers down, and ask doctors to clarify if you don't understand.

For Meg to cope, she wanted to research everything and get all the information she could, in order to advocate for Avery. Writing and blogging were also very cathartic for her. Facebook groups for Avery's conditions were helpful for learning information and gaining a community. Seeing pictures of other kids with similar conditions also helped, as she could see that there were happy times in the future.

Over the years, her coping strategies have changed. She tends to go with the flow, have faith, and let minor concerns go. Meg kept trying to go at a crazy pace, but her body started to protest. Meg had been running on adrenaline, but after a while, her body couldn't do it. To take care of herself, she gets lots of sleep, uses good sleep hygiene, does a lot of writing, has stopped drinking coffee, and uses positive self-talk.

Links: Instagram Blog Sky Full Of Stars

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 58: Standing Strong For Your Child With Guest Jessica Barisano

In this episode, we discuss bumpy journeys to diagnosis and treatment, advocating for your children, and making lemonade out of lemons. Guest Jessica Barisano noticed differences in her son early on, but doctors thought it was just lactose intolerance. It took seeing numerous pediatricians over 3 years for him to be properly diagnosed with a genetic growth disorder. This diagnosis opened up a whole new world, and Trent, her son, saw a slew of different doctors. He was later also diagnosed with Autism, ADHD, developmental delays, speech delays, and vision impairment. Having a diagnosis was helpful for Jessica, as she knew her son had something going on and it was relieving and validating that her motherly instincts had been correct.

The first order of treatment was hormone injections, which he will need for the rest of his life. Trent hates the nightly injection but he deals with it as best he can. Once they had the diagnosis of autism, Trent started applied behavioral analysis, which then helped him to engage in occupational and speech therapies. He is currently getting all of his therapies through the school system, including behavioral therapy and speech therapy. Although getting diagnoses was difficult for Jessica and Trent, therapies went quite smoothly, since the therapists were in the same hospital system.

School, however, was a different story. It was the hardest challenge for Jessica and Trent. Trent started daycare at age 1. It was painful for Jessica to see neurotypical children meeting their milestones, while Trent was not. Whenever she picked her son up, Jessica was given behavioral reports. Trent was asked to leave several schools, including private schools, charter schools, and faith-based schools due to behaviors that were beyond his control. Schools were not willing to work with Trent and Jessica. Trent started public school partway through Kindergarten, and it has gone well for him ever since. However, his earlier experiences had really affected his self-esteem. The public school system was able to provide them the proper IEP for Trent and was able to provide him the supports he needed to be successful in school.

Jessica initially went with what the doctors said until her son was finally correctly diagnosed. Once he was, she realized how she could advocate for her son, and began to be a huge advocate for her son. She armed herself with preparation, research, and questions. Jessica always recommends making sure to have the "right team," meaning the best doctors and therapists for your child. This may mean going through different doctors and therapists, but it is imperative to find the right fit for your child. It is very important to find a connection with each doctor and therapist. Just know, it may take a few sessions with that person to know if it is a good fit or not. To find helpful resources, as your child's therapists, as they have all the inside scoop on resources.

Links:

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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!

Check out our podcast Facebook page!

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 57 : Opposite Ends of The Spectrum With Guest Michele Doss

In this episode, we discuss opposite ends of the special needs spectrum: from nonverbal to giftedness. Guest Michele Doss's oldest child is gifted, her youngest child has autism and epilepsy and is mostly nonverbal, and her middle child has oppositional defiant disorder, has been kicked out of school twice, and is currently homeschooled.

Her youngest son was born with a lot of health issues. He had severe allergies to most of the foods Michele ate during breastfeeding. Once, after she ate cheese dip, he went into anaphalactic shock. Then, when he was 10 months old, he started exhibiting unusual movements and he was later diagnosed with epilepsy (myclonic epilepsy). For the next 2 years, he had up to 30 seizures a day. Her son started in early intervention very early. Because he was involved in early intervention, the state paid for his autism evaluation. He was diagnosed with autism around age 2. He started speech therapy very early through early intervention. At the time, he would repeat what he heard, but would not communicate in any meaningful way. After turning 3, he was enrolled in public school. While at school, he started eloping frequently, but due to not being able to communicate, he couldn't tell anyone his name or the name of his mother, which was very scary to Michele. After that, they started working heavily on speech to improve safety. Her son is now able to say a few important words. He has worked very hard in speech therapy and applied behavioral analysis. Her youngest son has been in both public school and home schooled, but ended up requiring a private school for his special needs.

In order to help with eloping while he is at home, she made sure all of her doors at home lock from the inside, and in order to get out, one needs a key. Their backyard is fenced in and there are padlocks on their gates. Now when they go out, they use their service dog, who is attached to her son. However, they don't go out a lot due to the risk of elopement.

For language, they initially tried the PECS system, but it wasn't a good fit for him. They used proloquo2go for a long time. Now, to help make sure he can communicate his needs, they talk with him face to face and make sure they take the time to let him say what he needs to say. ABA helped them realize they needed to give him time to process what they are saying and use fewer words, so that he understands what is being asked of him or said to him. It is hard to take him to the doctor because he can't communicate that he doesn't want to be there, doesn't understand why they are there, and that he is afraid. So she takes her other 2 children as well in order to help. When they go out in public and he has a tantrum, it has been hard for the family because other people don't understand why a teenager would have a tantrum. Other people have said things to her under their breath. Her son's epilepsy is now well managed, although it took 5-6 years to find the right medicine for him. During COVID, he has started having more seizures. He now has a different type of seizures, call gelastic seizures, where he he starts laughing hysterically out of nowhere and when they stop, he falls right asleep. Due to the seizures, they limit where they go, because certain things, such as the lighting, can trigger seizures.

Her 16 year old son is gifted. He started putting letters in alphabetical order at 8 months old and was reading at 2. In elementary school, the teachers suggested he be assessed for giftedness. During testing for school placement, he passed the giftedness test. He started on the gifted route in 5th grade. When he was young, they needed to keep him busy because he was always thinking. He led the boy scouts for his age group, did sports for a while (until he got a concussion). To help keep him stimulated, he has taken all honors and AP classes. In middle school, he took 4 high school classes, so he was essentially a year ahead when he started high school. This upcoming year, he will be dual enrolled in high school and college. Although he also has sensory processing disorder, he never needed an IEP or 504 plan.

If you suspect your child is gifted, Michele recommends keeping in touch with the teachers to see if they think the child should be tested or keep them involved in different activities in the classroom to keep stimulated and engaged in school. As they get older, make sure they are challenged, so they can stay on task.

Michele recently got involved with education consulting, where she talks with parents who have kids with different needs, and helps them find out what is going on and how to tailor education to the child's needs. She guides the parents through the steps to find out what the child needs help with and to find different pathways for the child to learn. She helps find options for the children. She recommends finding a support network for you and your children as well as finding activities and groups for your kids to try out and become engaged in.

Links for Michele: Website Facebook Instagram Proloquo2Go

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