Parenting Impossible – The Special Needs Survival Podcast

While the holiday season is usually the happiest time of the year, it can be a time of incredible sorrow for many families and friends who have lost a loved one or are grieving the loss of family traditions as a result of the pandemic. No matter what you are grieving, the holidays and dark winter can make this time particularly lonely and challenging.

Here are five tips that have helped Annette grieve in healthy ways during the holiday season ever since her oldest daughter, Elizabeth, passed away from Mitochondrial Disease seven years ago:

1. Continue Their Legacy Through Stories

Share your favorite stories of your loved one with your family and friends to continue and honor their lives and legacy.

2. Make Their Favorite Holiday Dish

Food is such an important part of the holiday season, and you can add a level of meaning to your menu by creating your loved one's favorite dish.

3. Decorate Your Home with Memories

You can pull out old photos and videos, crafts, ornaments, cards, and other items that remind you of your loved one to use as holiday decor. The best decorations are the ones that mean the most and fill your home with memories.

4. Foster Generosity

Finding ways to be generous and give back during this time allows Annette to repurpose her pain and help others. Generosity really is the grieving heart's antidote.

5. Prioritize Self Care

This tip looks different for everyone, but in a nutshell, it's important that you don't push your needs to the side. When you take good care of yourself, you will be able to take care of others as well.

Annette hopes these tips will help you this holiday season, but if you are facing continued grief and need help, don't hesitate to reach out to your doctor or another mental health professional.

Know that during this difficult time, Annette is grieving with you.

While your grief will never fully go away, it will change with time so that you can find joy again.

Annette is grateful for the second chance she has found through continuing her daughter's legacy through her work and in the ways she honors her memory during the holidays. We are confident that with time, you can find this peace and purpose as well.

From our "family" to yours, we wish you Happy Holidays.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Suicide is a dark topic that is full of sorrow and grief, but it is something that needs to be discussed, especially during a pandemic that has caused many people around the world to feel isolated. Gary Roe currently serves as a hospice chaplain and grief counselor for Hospice Brazos Valley in central Texas, and his experience with grief and loss as a child has allowed him to reach out to people during their times of intense sorrow with a heightened understanding of their situation.

Gary describes researching the topic of suicide as, "A solo climb of Mount Everest without any protection." Since 2000, suicides have increased by 30%. There is a suicide every 11 seconds, meaning 130 deaths per day, and for each completed suicide, there are 25 attempts. While everyone's experience of death is different, the grieving process after a suicide is especially unique.

Suicide is followed by grief, shame, and many, many questions that start with "why." Our hearts cannot stop turning over the questions of why it happened and why we could not stop it. We try to retrace our steps to see what we could have done differently, and place blame and guilt on ourselves and situations in the past. Other people around those grieving a loved one lost to suicide might treat them as if they have an infectious disease, avoiding them and distancing themselves as a way of self-preservation.

The first step in moving towards healing from this hurt is to accept what has happened. This practice can help you release some of the unanswered questions. You need to be kind and patient with yourself and have several safe people around you to listen and support you. One person cannot be with you 24/7, so it is important to have a number of safe people around you so that they are not carrying your grief with you alone.

Gary equates grief to a reservoir that sees constant rain. After a while, the pressure builds up, and if the doors are not opened, this life-giving place becomes destructive. You can open up these doors around your grief by talking about your emotions, questions, and fears to other people or by writing and creating visualizations.

Suicide may always be stigmatized by society, but if you can realize this early on, it may save you some anger and allow you to focus on your own healing over time. There will always be triggers—scenes in movies, holidays, memories, certain places—but, as Gary says, "The pain screams, 'I love you, and I love you still, and I'll never stop loving you.'"

When you grieve in healthy ways, you can turn the pain into something good that will have a powerful impact on other people. Gary wrote two books, Living on the Edge: How to Fight and Win the Battle for Your Mind and Heart and Difference Maker: Overcoming Adversity and Turning Pain into Purpose, Every Day. Both books can be found on Amazon and each has a version for teens and for adults. You can support Gary's initiative to help people in dark times find hope by believing in the truth of their worth. Learn more about his Suicide Prevention Project here.

You can contact Gary to help share these resources today.

Listen to his first and second episodes on Parenting Impossible for more advice about grieving loss.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

COVID-19 has made these last few months challenging, and in Gary Roe's words, "a grieving disaster." Without the traditional rituals around goodbyes, this pandemic has made it harder for people, including teens, not to bottle up their sorrow. In this second episode with Gary, he shares his experience with teens and grief and ways that family members and friends can help them.

Grief can be especially difficult for teens, as the adolescent years are formative in shaping the rest of their lives, and teens are often afraid to express their feelings in front of other people. They are still learning how to grieve, and need people to model good grieving habits in front of them—including their parents.

Teens experiencing their first heartbreak, death, or loss may often compartmentalize their pain or avoid being alone with their emotions by spending all of their time on their phone or with friends. The best way parents can help is by modeling healthy grieving behavior, as actions will speak louder than words. However, when you do have conversations with your teen, they will listen to you—even if they pretend that they are not listening—if they respect you and know that you love them for who they are.

There is a reason that the safety instructions on airplanes tell parents to put their own oxygen masks on first. If you are not taking care of yourself, you will not be able to take care of your kids. Teens and anyone dealing with grief need "safe people" around them who will love them unconditionally, listen well, and hold space for the release of their grief through conversations, writing, or creative expression.

The disability community has faced more grief than usual, as people with disabilities have accounted for around 40% of the deaths from COVID-19. Gary says that all of us, including teens, need to create new ways to help people say goodbye, such as over the phone, video calls, or other ways.

If you or your teen are facing grief from not having been able to say goodbye, you can try a variety of techniques. First, close your eyes and try visualizing the person. Begin talking to them when you are ready. You can also write them a letter or draw a picture of you having that conversation with them. Counseling is also a great resource, but remember that, "Finding a good counselor is a lot like finding a good pair of shoes," and it takes time.

Above all when dealing with grief, guard your heart. Gary says that knowledge is not always power, it can create anxiety as well. If something is not healthy for you, you do not have to sit in it, and you especially do not have to sit in it alone.

If you missed the first episode in this series on grief with Gary Roe, you can find the first episode here. You can also see more of Gary's online resources on his website.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

When most people hear about what Gary Roe does for a living, he says, "They just shake their heads and say, how did you wind up there?" The answer to this question is that Gary had a troubled childhood riddled with grief that he transformed into a career path for good, thanks to help from many people who supported him during those trying years. After studying psychology and going to seminary, Gary currently serves as a hospice chaplain and grief counselor for Hospice Brazos Valley in central Texas.

From the ages of three to seven, Gary was sexually abused. This trauma was followed by the death of two grandfathers, a grandmother with dementia who could not remember him, and the death of a dear friend at the age of 12. A few years later, his mother began to show signs of a mental illness, and his father had a heart attack right in front of him. Gary was 15 years old when he and his brother made the decision to take their dad off of the ventilator. After all of this trauma and loss, Gary was given a second chance to have a family when another student at his school invited him to live with his family. Their acceptance of him changed his life.

Gary's experience of grief and loss inspired him to support other people in their grief. He knows that there is no "magic pill" or perfect "prescription" that cures everyone's grief. Gary notes, "You don't graduate from this, you move forward."

Not all grief involves mourning the loss of a person—you can mourn a financial loss, the loss of a job or a dream, and more. Life is a series of little "deaths" that we have to learn how to grieve in healthy ways. Rather than toughening up, "moving on," sitting in pain, overeating, starving, and ignoring your pain, you have to face it one day at a time. The experience of grief is like being in a forest: you are surrounded by darkness and trees, and you only have enough light to see a few steps ahead of you.

There are three thoughts that every grieving person has:

1. Am I alone?
2. Am I crazy?
3. Am I really going to get through this? And if I do, who am I going to be on the other side?

We may wish that grief came with instructions so that we could move past these questions quickly, but Gary has a simplified acronym to help people process their pain: A.I.R. it out. "A" stands for acknowledge, "I" stands for identify, and "R" stands for release. Once you acknowledge what is going on, you can identify how it is making you feel and release these feelings. This is a repeating process that lasts for as long as you need it to. Gary suggests that people release their feelings by talking to someone who loves you and who listens well. You can also write or create art or creative visualizations that will help you express yourself.

Your experience will be different from everyone else's because you are unique. For Annette, her experience of grief "was like going through jello." She was forgetful and exhausted, and part of her did not want to let go of the pain of losing her daughter, Elizabeth, to mitochondrial disease because the grief made her feel like a better mom.

Grief does not have an expiration date, and it is because we feel love that we feel grief. According to Gary, "All you can do in grief is to grieve."

You can see more of Gary's online resources on his website.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Mark Worthington joins Parenting Impossible to share his insight about Trust Protectors and their role with Special Needs Trusts. A Trust Protector acts as a supervisor or watchdog to ensure the security of a trust, in part by observing the Trustee's actions within the financial account. Often, families do not want to burden a single person with the role of Trustee, but they also know that having a Co-trustee can make the situation tense or complicated.

Selecting a Trust Protector is the most effective in these three situations:

1. When you need someone to act as a go-between for the Beneficiary who has a disability and the Trustee
2. When you need to review, supervise, and oversee the Trust's accounts
3. When you need to remove and/or replace a Trustee

A Trust Protector oversees the financial decisions and ensures that the relationship between the Trustee and the Beneficiary is successful at all times, removing the Trustee if necessary.

Because of the nature of this supervisory relationship, the Trust Protector can wield a lot of power over the Trust if you are not careful. One of the most dangerous threats to their financial stability that a Beneficiary can face is for their Trust Protector to have broad power over their Trust account. Given too much power, a Trust Protector could interfere with the funds in the trust or strain the relationship between the Trustee and Beneficiary.

Special Needs Trusts can be difficult to understand and manage, and these challenges are part of the reason that Annette and Mark founded the Special Needs Law Group of Massachusetts. Banks and trust organizations are often unwilling to take on a Special Needs Trust because these trusts are too tedious to maintain or are too small monetarily.

Learn more about bringing on a Trust Protector in this episode below.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Mom, podcast host and self-proclaimed loudmouth, Tamara Taggart, joined Parenting Impossible with host Annette Hines to talk about society's perceptions of people with disabilities, specifically those of people with Down Syndrome. Tamara's son, Beckett, was born with Down Syndrome, but the doctors did not diagnose him immediately. When they did, his disability was presented to her as bad news.

After receiving her son's diagnosis, instead of accepting the doctors' negative mindset about it, Tamara became a "loudmouth" advocate and "captain of her son's team." She sent out an email to friends and family to announce the birth of a beautiful and healthy baby. When a baby is born, Tamara says, you're supposed to say "congratulations," not "I'm sorry."

In her experiences over the last 13 years with Beckett, Tamara has found that the way people speak about Down Syndrome and the way they segregate those people with disabilities has stood in the way of Beckett reaching his full potential. Early on, a geneticist told Tamara that Beckett "is who he is," implying that his potential was limited and set in stone. To Tamara, Beckett is a normal person, just with an extra chromosome.

While Beckett's life skills teachers and specialists are amazing, Tamara believes that to have true, meaningful inclusion, we need to ask individuals with disabilities what they want to do or accomplish. According to Tamara, society may think that it knows a lot about Down Syndrome, but every person is unique.

Annette had a similar experience with her daughter, Elizabeth. During an appointment with a neurologist early in Elizabeth's life, he likened Elizabeth's brain to "swiss cheese." For a young mom watching her child fight for her life, those words cut deep, similar to how Tamara felt hearing the words Beckett's doctors used to describe his condition.

Tamara's advice to parents in the disability community is to speak up, even if your voice shakes, and to remember that you are the "captain" of your family's team. You have the power to advocate for your child, and you will regret it if you do not stand up for yourself or your child.

In March, TELUS approached Tamara and asked her to host a podcast, and she recorded her first episode of TELUS Talks with Tamara Taggart that afternoon. She loves being a host because she loves talking to real people who have important stories to tell who and are making a difference.

You can learn more about Tamara on her website and connect with her on Facebook, Twitter and Instagram. Join Annette's Facebook Group, "Circle of Care" to be a part of a group of parents sharing encouragement and resources for children with disabilities.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Mary Beth McMahon, President and CEO of Special Olympics Massachusetts, joined Parenting Impossible with Host Annette Hines to discuss the transition to virtual activities and society's perspective on people with disabilities.

When COVID-19 forced Mary Beth to move the organization's events and summer games online, she knew she would need to keep the events engaging and inclusive. One of the biggest ways that she has pivoted during this time is by continuing to promote the Special Olympics program known as Unified Champion Schools. This "unified sports" program is open for students of any ability to join a unified sports team for basketball or track and field, and it is currently implemented in 202 high schools.

The Unified Champion program has allowed students to form genuine relationships while developing their skills, and Mary Beth and the staff at Special Olympics Massachusetts are working to bring this program to middle schools as well. Unified sports have positively impacted many lives, including the lives of Mary Beth's children. Her son plays on a unified soccer team, and because of this and his experience being brought up around Special Olympics, he does not see people with disabilities as solely defined by those disabilities, but as human beings in their own right. Mary Beth firmly believes that while we may not be able to change a person's opinions, we can change a culture's perspective on disabilities.

In addition to the Unified Champion program, Special Olympics Massachusetts offers small, in-person events as well as virtual events and activities. From virtual dances, games, and activities to hiking, running, snowshoeing and more, athletes of all ages are invited to participate in the sports and events they enjoy.

Mary Beth began her work with Special Olympics as a volunteer, and she continued to come back to events out of her desire to do more for the athletes. To date, she has worked for the organization in Maryland, Northern California, Nevada, and Massachusetts. You can contact her via email at [email protected].

Follow Special Olympics Massachusetts on Facebook and Twitter to stay up to date with their virtual and in-person events.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Derek "Tank" Schottle, a Special Olympian with Autism from Sugar Land, Texas, joined Parenting Impossible to share his experience with sports and inspiring other people with disabilities through social media. Tank joined the Special Olympics in 2001, and plays seven sports: softball, basketball, volleyball, track, bocce, golf, and soccer. Annette has been following Tank on Twitter and was inspired by his positive messages—he is known best for his inspiring message about the Special Olympics and what it means to him.

In 2019, the Secretary of Education, Betsy DeVos, tried to cut $17.6 million from the Special Olympics budget. Tank responded to this news by sharing a video on social media to talk about how much the Special Olympics means to him. The video went viral, and led to multiple interviews, including one with CNN. In these interviews, Tank shared with reporters how the Special Olympics had changed his life. He knew that it would be difficult for many of the athletes who were in school to participate if the budget cut was confirmed. By speaking up, Tank made a difference— the proposal to cut the Special Olympics budget was ultimately canceled.

Tank's inspiring messages were not limited to the subject of the Special Olympics. Growing up, he experienced a lot of ups and downs and thankfully had a supportive family to help him along the way. Tank tweets messages of encouragement frequently and shares what's in his heart for others. His advice to younger people with disabilities is to never give up on yourself or to change for anyone else. He believes that you should not let your disability define you, and encourages others to keep fighting for their dreams and to use their voices for good.

Tank also received The Don Rodman Profile in Compassion and Courage Award from the S.E.A.L. Foundation in Massachusetts in 2019. In his acceptance speech, he shared that most people did not have high expectations for him growing up, but he saw himself as achieving more than just his role as a greeter at Walmart. His devotion to and passion for sports has allowed him to succeed as a Special Olympian as well.

You can connect with Tank on Facebook and Twitter to read and share his words of inspiration.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Conversations about inclusion often talk about race and diversity, but one topic that people often leave off the table is ability. In honor of Down Syndrome Awareness Month, Michelle Sie Whitten, the President and CEO of the Global Down Syndrome Foundation, and her daughter, Sophia Whitten, who has Down Syndrome, joined Parenting Impossible to discuss the meaning of true inclusion for people with Down Syndrome and other disabilities in society, research, education, and more.

As the topic of diversity becomes more widespread, people with disabilities tend to be "featured" for their disabilities rather than being included as whole, unique human beings. Sophia and Michelle talk about Down Syndrome as only one small part of a person's identity, not their entire identity

With this language in mind, one of the Global's initiatives is to fund and support research that benefits people with Down Syndrome. The Foundation has donated more than $32 million to establish the first Down Syndrome research institute, supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. The Foundation also has several medical publications including Global Medical Care Guidelines for Adults with Down Syndrome, which was recently released after four years of research.

People who have Down Syndrome are more likely to develop Alzheimer's, certain types of Leukemia, autoimmune diseases, and other health complications, and this research is an important part of the efforts needed to give these individuals a better quality of life for a longer period of time. This work is especially important during the pandemic, as people with intellectual and developmental disabilities are at high risk.

To support this research as well as its outreach efforts during the pandemic, the Global Down Syndrome Foundation continues to raise money. The Foundation's largest fundraiser and the largest fundraiser for Down Syndrome in the world, the "Be Beautiful Be Yourself" Fashion Show, will be a virtual event this year on Saturday, Nov. 14, 2020. Sophia will be participating with several others as a model, and several celebrities will perform, including Jamie Foxx and his sister Diondra Dixon, as well as Amanda Booth and Qunicy Jones. You can join this event by visiting the website. Tickets are $25 and will support the Foundation's mission.

You can connect with the Global Down Syndrome Foundation on Facebook, Instagram, Twitter, and LinkedIn.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

In a time of confusion and fear, Parenting Impossible guest Laura Whitaker says that she is leading her business with courageous and thoughtful decision making rather than being reactive to the constant changes that are occurring. Laura is the Executive Director of Extra Special People (ESP) in Athens, Georgia, an organization that provides summer camp, resources, support, and services for families of kids with disabilities. She started in this role when she was 19 years old, and she says that while some people may choose their job, this job chose her.

COVID-19 has made her organization's traditional methods of operation challenging, so before attempting to create a system using what they already knew, they first asked each of the 600 families that ESP serves what they wanted and needed. Using the feedback they received, they created new services to provide support and resources for these families, including summer camp, "buddy calls," support groups, counseling, and more. Laura's favorite new activity to come out of the pandemic shift is Power Hour, a time for parents, kids with disabilities, camp counselors, program coordinators, and others to enthusiastically engage and share resources online. This program is available to anyone, anywhere, and you can find more information about it here.

Beyond helping her create new services, the pandemic has confirmed Laura's belief that relationships and connections are essential, even virtually, and that moving forward with courage can allow you to analyze a situation thoughtfully before making a decision. One of her favorite quotes from Winston Churchill states, "Fear is a reaction. Courage is a decision." These words have helped shape the way ESP has continued to serve their community during this time.

Throughout ESP's years of service and their changing methods during the pandemic, Laura's goal has always been to educate while instilling confidence and compassion in people who are involved in the special needs community as well as families and individuals who may feel confused or scared about engaging with people with disabilities.

In 2019, Laura gave a TEDx Talk about what she calls the "Dandelion Shift." This shift illustrates that, as children, many of us did not view race, color, ability, societal rules, or wealth in the same way as adults. She likens this to the way we see dandelions—a plant her young daughter enjoyed for its yellow beauty, but that her neighbor sprayed with weed killer in their front yard. Laura says that creating a knowledgeable and empathetic community can help people of all abilities learn new values and perspectives about life.

Laura and her remarkable team continue to lead with courage and help other organizations looking to support families of kids and adults with special needs duplicate their success. They are working to make ESP available in more locations and to help others learn from their years of experience and established reputation in the community. You can learn more about this organization here.

You can connect with ESP through social media on Facebook, Instagram, Twitter, LinkedIn, Vimeo and Youtube, and you can contact their team here.

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.