Parenting Impossible – The Special Needs Survival Podcast

This week is Mitochondrial Disease Awareness Week, which is a cause very dear to Annette's heart. Annette's daughter Elizabeth passed away back in 2013 from mitochondrial disease. Every year, during the third week of September the mitochondrial disease community comes together to bring awareness and educate others on this rare genetic disease. MitoAction is a nonprofit organization which started in 2005 from a New England support group. During the awareness week, MitoAction encourages others to participate in and organize various events. For Wednesday, which is the release day of this podcast, they are supporting "Light a Light for Mito" which is held to remember your loved ones lost to mito. Please be sure to wear your #greenformito, join our Facebook event and share your light and loved one's photo memory on our event page "discussion" wall. For other Mitochondrial Disease Awareness Week events, please check out MitoAction's page here.

Mito-Mom

This week's podcast episode features another "mito-mom" – Maria Hopfgarten. Maria was also one of Annette's first podcast guests back in 2019. You can listen to that podcast episode here. Maria is a blogger, author, President of the nonprofit Miracles for Mito, wife and mom to daughter Sarah and Jacob. Maria just released her first book, "Letters to Jacob: Grieving the Loss of a Child", which is based on letters she wrote to her son Jacob after he passed away from mitochondrial disease back in 2016. Annette and Maria speak about coping with grief and how Maria's blog about her son Jacob eventually became a book.

Letters To Jacob

Maria's blog "Moments with Jacob" started out as a way to keep family and friends advised about Jacob and how he was doing. Maria also realized that writing was very therapeutic for her and helped her gain a perspective when there were major decisions to be made regarding Jacob's health.

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

This week features a very special back to back, two podcast episode release as Annette speaks with two guests who were interviewed for a recent Today Show Article called "Autism Wars." Today's episode features Annette's interview with Amy S.F. Lutz, an author, vice president of the National Council on Severe Autism (NCSA), and a mom to 5 children, her oldest son Jonah having severe autism. Amy also became so interested in the history of autism due to her son's issues, she went back to school and is currently seeking a doctorate in the history of medicine. Annette and Amy speak about the "Autism Wars" article, severe autism, and extreme caregiving.

Severe Autism

Severe autism looks very different from very mild forms of autism – this is why autism is noted as "Autism Spectrum Disorder." Autism can be very mild on one end of the spectrum or very severe on the other end, with a wide range of levels in between. A severely autistic individual will have profound intellectual disabilities, can be very aggressive and exhibit violent behavior, and are often very unstable and can potentially harm themselves as well as others. Severely autistic individuals also usually require exceptionally trained staff and specific supports and programs due to the challenging behaviors they often have. While individuals with mild forms of autism are often able to live somewhat typical lives on their own, those with severe autism generally need extra support and specific care for most if not all of their lives.

Autism Wars Article

Most parents of severely autistic children use a common-sense position based on their experience with their children. Unfortunately, as the Today Show article "Autism Wars" conveyed, these parents often face criticism from some autistic adults and some that view their own autism diagnosis more as an identity rather than an illness or impairment. Some of these autistic adults tend to label parents of severely autistic children as ableists - that these parents don't really love their children and they are only sharing things about their child to gain attention for themselves. Some autistic adults also feel that the parents of severely autistic children are violating their children's rights by sharing items about them publicly on social media or other platforms. Unfortunately, most severely autistic children do not have the capacity to consen

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

This week features a very special back to back, two podcast episode release as Annette speaks with two guests who were interviewed for a recent Today Show Article called "Autism Wars." Today's episode features Annette's interview with Kerry Magro, who is an award-winning national speaker, a best-selling author and a role model in the disability community. Annette & Kerry speak about the "Autism Wars" article, disability in the workplace, bullying, unity and inclusion.

As a child, Kerry was non-verbal at 2.5 years and diagnosed with autism at age 4. Kerry was not able to speak in complete sentences until age 7 and went through years of therapy to get where he is today. Kerry has a doctorate in Educational Technology Leadership and is currently the CEO and founder of KFM Making a Difference which is a non-profit corporation that focuses on disability advocacy and housing.

Autism Wars Article

While most people don't like the "Autism Wars" title of the Today Show article, thinking "war" is too strong, Kerry does feel there has been a divide in the community for quite some time between parents of autistic children and autistic adults. There are those on the autistic adult side that feel that parents of autistic children share too much and parents who feel that autistic adults don't share enough to allow them information they feel they need. There needs to be unity, inclusion – both sides working together rather than separate. The article did have a positive note for Kerry that many parents reached out to him about finding advocates and building friendships between parents and autistic adults.

Social Media Sharing

Another portion of this autistic divide is on sharing on social media. Some autistic adults feel that some parents overshare videos and photos on social media of their autistic children, basing this on the child being too young to consent. Sharing in smaller, local groups for educational purposes can be beneficial but sharing to Facebook in larger groups might not. Kerry mentions there is toxicity in social media and sometimes it is best to think before you share anything especially if it may cross a privacy line.

Disabled in the Workplace

Kerry also speaks about the disabled in the workplace. Statistics say that up to 90% of autistic adults are either unemployed or underemployed. Kerry notes there should be a better onboarding process for disabled individuals possibly offer

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

The Britney Spears guardianship case has brought the topic of guardianship into the spotlight lately. People all over the world want to know more about what guardianship is and why it is used. In this podcast episode, Annette goes over a few of the many guardianship questions she has received from listeners and followers. Please note that guardianship laws do vary from state to state. Please check with your state for their specific guardianship laws and procedures before beginning the guardianship process.

A Way to Connect the Disability Community

Annette opens the episode with a little explanation as to why she began this podcast. Over 20 years ago, as a special needs mom, Annette struggled to find the information she needed for her daughter Elizabeth. Elizabeth was born with mitochondrial disease, had a profound brain injury and was wheelchair bound. Annette would constantly find one piece of information she needed in one place, then would have to hunt down another piece somewhere else. There was no one place to gather all the information she needed. This podcast was a way to try to help connect resources with families, professionals, and other interested parties in the disability community – to connect everyone together in one way, one group. Annette also created Special Needs Companies and the Facebook group Circle of Care to offer resources and a way to connect the disability community as well.

Terminate a Guardianship

The first guardianship question Annette goes over is how do you terminate a guardianship? Annette explains this will require a trip back to court and medical documentation. This medical evidence is needed to prove to the court that the previous incapacity the individual had that necessitated the guardianship before, is now changed and that person is now capable of making decisions for themselves. A full guardianship may now be able to go to a limited guardianship, or a guardianship may be able to be terminated completely or go to an alternative form of guardianship. Many states have gone from not having any alternatives to guardianship to now having supported decision making laws. These allow a person with capacity to have a group of supporters assist in their decision making but the ultimate decision is left to the disabled person rather than left to the guardian in a guardianship situation.

Right To Counsel

Annette also goes over

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

As a child, Erich Shafer did not understand what he was and how he was different. He knew he had balance issues and had to go to speech therapy every week for a heavy lisp to make himself "better." It wasn't until later in life that he discovered he had Dyspraxia (Developmental Coordination Disorder) and was on the Autism Spectrum. In this podcast episode, Annette speaks with Erich about his neurodiverse journey and how he overcame his childhood struggles to create a successful and fulfilling life for himself.

Childhood Years in Therapy

Erich spent many of his childhood years going through what is now known as ABA Therapy. He felt there was a value placed on the items he had, what he wanted to do and the friends he wanted to see. Erich felt the value was his behavior, his compliance. If he did not act a certain way, he was not allowed to watch television, to go outside, to play with his friends, to do the things he wanted to do. Erich felt his therapy was similar to "clicker training" with dogs – a good behavior was rewarded with a treat.

Moving towards adulthood, Erich felt like he was "playing pretend." His therapy taught him the technique of "Masking" which is wearing the appropriate mask or behavior for each social situation you go into. Therapy made him feel like he needed to adapt, he needed to act a certain way, he needed to wear a mask to fit into normal society. Erich felt his therapy did not allow him to be himself.

Driven To Succeed

After getting a communication degree in college, Erich did a complete behavior shift and got into broadcasting. He got a radio internship where he was eventually able to open up. He was in a place where he was thought of as unique, one of the "creative types." Over time he also developed what his wife calls "motivated by spite" – if someone told Erich he could not do something, he purposely would turn that around and figure out a way to do it – and then do it!

Erich now has a fantastic life he has worked hard for. He has been married for almost 10 years to a wonderful women who understands his neurodiversity, his needs and supports him in every way possible. Erich has a full-time job with Work Community Independence, also works as an IT person for Boston Managed IT and even created his own company,

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

Being stopped by or questioned by the police can be stressful for anyone but for those who are mentally ill or developmentally disabled, it can be quite traumatic. Often these traumatic situations can trigger certain responses in a mentally disabled individual which can escalate into violence or other extreme matters, causing them to be unfairly accused/charged or labeled due to their illness or disability.

In this podcast episode, Annette speaks with Attorney Jason Chan, a criminal law attorney and partner in the firm Seed, Chan and Associates in Boston, about how individuals who are mentally ill and developmentally disabled are often treated and charged unfairly within the criminal justice system.

The main problem area Attorney Chan notes is usually with law enforcement or first responders as they generally have the first contact with the disabled individual. There seems to be a lack of training and understanding for first responders as they don't have specific mental disability instruction. First responders are often only given very basic information about the situation they are heading into and are generally not aware of how to recognize danger zones and triggers for certain mental illnesses and disabilities. This can at times lead to very dangerous situations. Training is highly needed for first responders but unfortunately there in no universal training course or guidelines. Difficulties also lie around who would be capable of instructing a training course and with so many different kinds of mental illness and disabilities, how can you train a first responder to recognize all the signs and the care needed for each.

Restraining orders can cause issues as well. Some individuals that have mental illness or developmental disabilities don't understand or deal with certain social situations well and can be misunderstood by roommates, those they work with or even romantic partners. Restraining orders can be devasting to a mentally disabled individual. It does not necessarily mean they did something criminally wrong, but now that there is a restraining order tied to their name, it can preclude them from certain disability programs and housing situations once a background check is run.

Traffic stops can also lead to stressful situations where a mentally disabled person could panic and either want to flee the scene to the safety of their home or they may want to get out of the vehicle to speak with the police officer. These types of reactions can escalate an already stressful situation with law enforcement. Attorney Chan recommends that parents and/or caregivers coach their children ahead of time, in the event they are pulled over by law enforcement at some point. Make sure the mentally disabled individual understands that police are there to help and likely there is nothi

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

Planning a future can be challenging. Most people plan their future one step at a time, planning forward, toward their dream or goal. The PATH Process , "Planning Alternative Tomorrows with Hope", is a creative planning tool that actually starts with the dream or end goal in mind, and you plan the action steps backwards from that dream.

In this episode, Annette speaks with Teri Steinberg , a disability consultant and mom, about the PATH Process and how using this you can assist the individual and their support network, plan positive futures. Teri has been building PATH's for over 16 years now, her first PATH being for her son.

When Teri's son Bill was diagnosed with Autism over 20 years ago, she immediately quit her job and began to research everything about it. She began gathering as much information as she could from other parents, support groups, government meetings – anywhere she could find information related to Autism, treatments, services, etc. Teri created a huge information board, which she would share with other parents and support groups. Teri did not want to be a parent that wallowed in grief about her son's diagnosis, but rather a parent of action that did everything she possibly could to assist him and other families in the similar situations.

Teri started meeting with a few parent support groups a few hours a week, offering them all the information she had gathered. She then began working with microboards, which featured a small circle of support people surrounding the disabled focus individual. Unfortunately, Teri felt they focused too much on things the individual would NOT be able to do. She wanted to speak about the individual's strengths and abilities and what he was good at.

Teri was taught the PATH Process by David Wetherow, Jack Pearpoint and Lynda Kahn. PATH is a specific tool that allows you to bring together the disabled individual and the support group of people that know and love him. Everyone sits and discuss the individual's strengths and everything he can do and is good at, rather than focusing on the negative side and what he is not good at. The individual's ideal future dream life is discussed, and then working backwards, the action steps are created to implement a positive life working towards that dream. Everyone in the support group is then enlisted to assist in some part of the individual's PATH.

It is important to note also that people with intellectual and developmental disabilities can participate in their life at every level. They should be included in all decisi

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

In this episode, Annette speaks with Christa Couture, an award-winning recording artist, author, and broadcaster from Toronto, Canada. Christa, who is also disabled, wrote the book "How to Lose Everything" which is a story of the grief and loss she has suffered in her life. Christa has also recorded a Walrus Talks (the Canadian Ted Talks) called "Living Better" where she speaks about accepting your life as different rather than better.

Christa has known her fair share of grief and loss. At 11 she was diagnosed with bone cancer which was cured by the amputation of her left leg above the knee. Christa had 2 infant sons who tragically passed away followed by divorce and then a thyroid cancer diagnosis which threatened her speaking and singing careers. Christa finds that people don't always want to speak about grief and loss, they are uncomfortable with sorrow. Most seem to want to fix things quickly and just say, "Things will get better". Christa wrote the book "How to Lose Everything" to connect with those that are struggling with their grief, to hopefully allow them to feel less alone. She also hopes the book will find those who may not be experiencing loss at this time but will allow them to understand and have compassion for someone they may know who is grieving.

Christa, who has been an amputee since the age of 13, wears a prosthetic leg. For many years she kept her leg covered, not keeping it secret just not comfortable with it. A few years ago, she received a new prosthesis and was feeling good about it and wanted to celebrate it. Christa had seen a beautiful prosthesis that had been hand painted with flowers and was determined to create one for herself. Her "flower leg" was then created laminating floral upholstery fabric to her prosthetic leg. Her prosthesis became a "celebration of her loss", as this now beautiful thing that she was proud of and wanted to show people. The conversations about her leg also changed from what happened to you, to - wow that is beautiful, where did you get that, your leg is so cool – her leg became a huge confidence booster.

Christa also discusses her view of her disability. As an amputee, Christa considers herself a disabled person due to the loss of a limb that she had been born with, whereas a person that w

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

June celebrates LGBTQ+ Pride month each year to honor the 1969 Stonewall Uprising. Pride Month is a time to recognize the issues, challenges, and discrimination the LGBTQ+ community has faced and to celebrate the triumphs. In this podcast episode, Annette speaks with Ivylee Martinez and her adult child El Martinez, regarding gender identity issues.

El Martinez identifies with the pronouns They/Them/Their and at just 19 years old, boasts an impressive activism resume. El begins by discussing that they had always known something was off with their gender. In their freshman year of high school, El joined the GSA – Gender and Sexuality Alliance and met LGBTQ+ and trans people which got them thinking about their own gender identity. El also gives us a breakdown of the various definitions for those not familiar:

(Biological) Sex – assigned to a child at birth, most often based on external anatomy.

Gender Identity – the term(s) someone uses to define their gender, ex: male, non-binary, woman, fluid.

Gender expression – the manifestation of someone's gender through their appearance.

Transgender – a term used to describe someone who does not identify with the label/biological sex they were assigned at birth.

Cisgender – a term used to describe someone who identifies with the label they were assigned at birth.

El goes over the use of pronouns (He/She/They) and how it can be difficult and challenging for friends, family, teachers, and acquaintances to get pronouns correct. El mentions the best thing to do if you make a mistake on someone's pronoun is just to fix the mistake and move on with the conversation. Too many apologies may begin to alienate the transgender person and make them upset or uncomfortable.

Annette and El also discuss how those in the disabled community, mainly neurodivergent and autistic, are more likely to be transgender. Some autistic individuals center their gender identity around their autism and have been key in pushing forward gender acceptance. They also discuss the transgender fear of the healthcare system and the trauma that can occur when they are assigned the wrong gender by their doctors. They feel that sometimes transgender people avoid the treatment they need due to fear of having to explain or correct their gender to their doctor.

El was forced to become their own advocate and activist due to their school system and their lack of support for El. El was harassed throughout their time in high school and felt the school did not do enough research to support them and other LGBTQ+ people.

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.

Resilience is the ability to withstand or recover quickly from difficult challenges. Many special needs parents may struggle with this throughout their child's journey. The many challenges and difficulties with everyday life, doctors, and getting the proper supports they need can be overwhelming. In this episode, Annette speaks with Dr. Marcia Nathai-Balkissoon, who goes by Marcia NB. Marcia NB has a PhD in industrial engineering and is the author of the new book "Lighting the Path: Leaning into a Hopeful Future as a Special Needs Parent" . Marcia NB quickly faced her challenges with her own daughter Emma and became an advocate to help other families work through their own challenges.

Marcia NB's daughter Emma was born in 2012 with heart issues and as the result of a heart surgery mistake, became severely brain damaged at only 8 months old. While at a rehabilitation facility with Emma, Marcia NB saw many special needs children and families. After a conversation with one mother that knew nothing about her own son's disability, Marcia NB decided she needed to advocate for other families that were not getting the information they needed regarding their own children. Marcia NB became a Parent Skills Master Trainer through the World Health Organization and Autism Speaks.

Marcia NB also has a YouTube Channel called The Changemaker Series where she interviews people who are making a difference just by being themselves. Marcia NB also features her own talks where she hopes to help people step out of their "overwhelm" state and start taking back joy and fulfillment.

Marcia NB says, "We all have to come to our own understanding and create our own meaning out of what we are going through as special needs parents." To release her own personal tension and stress, Marcia NB wrote. Marcia NB says the name of the book "Lighting the Path" came to be due to her feeling she was in darkness when the accident happened to Emma. Marcia NB felt she needed to know this darkness, to become resilient and to help others in similar situations through their own darkness. Lighting the Path's final chapter "Celebrating Your Resilience" offers the wish that her expe

Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.