Parenting Impossible – The Special Needs Survival Podcast

EP 55: Inside The Mind Of Autistic Author Ido Kedar In this episode of Parenting Impossible, Annette introduces us to 23-year-old Ido Kedar and his mother Tracy. Ido wrote his first memoir, "Ido in Austismland: Climbing Out of Autism's Silent Prison," as a young teenager. The book had a huge impact on the lives of people with autism and their families. It's also successfully challenged members of the professional community to look at autism theories with fresh eyes. Ido spent the first seven years of his life locked in silence with no means to show his intelligence. Now, he communicates by typing on an iPad or keyboard, and by pointing on a letter board.

Ido begins his interview with a powerful statement about his mother and the importance of having an advocate. Annette and Ido discuss how his mother Tracy's persistence about his ability to understand words was an integral part of his journey to becoming a writer. Despite what medical professionals told her, she continued to push for opportunities for Ido to express himself.

Ido believes he was born a writer even though autism specialists didn't think he could understand words for years. He was finally able to put his thoughts into writing at the age of 12 and published his first book, "Ido in Autismland" just a few years later. The book consists of dozens of short, autobiographical essays offering new insights into autism symptoms, treatments, and the inner emotional life of a severely autistic boy. Ido challenges what he believes are misconceptions in many theories that dominate autism treatment today.

Later, Annette and Ido share more about his newest novel, "In Two Worlds." The fictional story is about seven-year-old Anthony's journey of discovery and freedom. The character can not speak or communicate his thoughts, and no one has any idea of his true intelligence. He's locked inside himself and this sharply divides his life between his inner and his external world. It's not until Anthony turns 16 that a new teacher helps him discover how to communicate.

The young author also shares three important tips about living with autism. Number one, skills can improve with practice and determination if you just believe in yourself. Number two, if you're on the journey towards communicating, let the world hear what you have to say. And number three, make peace with your diagnosis, you can't change it but you can accept it.

For more information about Ido Kedar: http://idoinautismland.com/

For more information about how to purchase his books: http://idoinautismland.com/?page_id=213

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 this episode of Parenting Impossible, Annette interviews longtime friend and licensed Independent Clinical Social Worker Kate Morrison. Kate specializes in working with families, children, and adults with Autism Spectrum Disorders, Intellectual Disabilities and Developmental Disabilities.

Annette and Kate discuss what services will look like as Day and Residential Programs begin reopening after the onset of the COVID-19 pandemic. They also discuss how funding plays a role in programs moving forward.

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 this edition of Parenting Impossible, we learn more about a historic school that played a huge role in host Annette Hine's life. Perkins School For The Blind was established 190 years ago and was the first school created for the blind in the United States. Perkins' best-known student, Helen Keller, flourished while studying at Perkins and is highly regarded around the world for her efforts to assure equal benefits and rights for all people, particularly those with disabilities.

During this podcast, Annette speaks with Perkins Education Director Pat McCall and recalls fond memories of her daughter Elizabeth's time spent at the centuries-old school. Elizabeth passed away from Mitochondrial disease in November 2013 at the age of 17. "Perkins was Elizabeth's favorite place in the world, nevermind Disney World, she always wanted to be at Perkins," according to Annette.

Later in the show, Annette and Pat talk about how the COVID-19 pandemic has changed the way students are learning, and the most difficult obstacle the staff had to overcome. "One thing I thought was so amazing, was showing the parents and caregivers how to teach at home," said Pat.

Pat and Annette also touch on how the pandemic will forever change the way students learn in the future. "It's taught us how to better incorporate technology into programs, and we're better educators because of this," according to Pat.

In honor of Elizabeth's birthday on May 31st, Annette is matching every donation made to Perkins School For The blind(up to $5,000) through June 14th, 2020.

Click the link to learn more and contribute to this fundraiser: https://support.perkins.org/give/262020/#!/donation/checkout

In this episode of Parenting Impossible, Annette looks back at what inspired her to start this podcast last September. Annette's vision was to create a space where people could come together and talk about issues affecting the special needs community. It was all in honor of her daughter Elizabeth, who passed away from mitochondrial disease in 2013.

Despite the pain, Annette learned the importance of remembering the joyful moments. While it's not easy to talk about, Annette hopes her loss will become a source of strength for other special needs families. This week, as Annette's family and friends remember Elizabeth on her birthday, May 31st, we take a moment to reflect on a podcast that highlights Annette's brave journey.

The Power of Storytelling - Seek The Joy Podcast - Episode 24 https://www.seekthejoypodcast.com/show-notes/powerofstorytelling24

December 10th, 2019:

"This month's episode reminded me that we all have struggles in life, and when we choose to honestly share our own stories - the highs and lows, ups and downs, moments of difficulty but also of triumph - we can create a path forward we never anticipated. But even more than that, we can help and inspire others to pave a new path forward for themselves, too.

It's truly my honor to share the stories and provide the space here to share a little bit more about the women behind these words.

Annette Hines is a best-selling author, lawyer, and the founder of Special Needs Law Group of Massachusetts, PC. Her world as she knew it exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease—a degenerative, life-limiting illness. Annette's joy quickly turned to apprehension, and she knew nothing would ever be the same again.

In this week's new episode, Annette shares her journey with her daughter Elizabeth and learning to become an advocate in the face of adversity, but also in joy. In her book, Butterflies and Second Chances, Annette shares her family's story and provides hope and inspiration to so many; it's the inspiring true story of a mother's special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis.

When Annette first started writing, she wrote the book for herself. She hadn't connected yet with other parents who had lost children to illness, and that was an amazing turning point for her. She realized that she was creating an incredible tool that could help other families who are experiencing the same hardships - and watching the impact that her journey and book are having on others has been incredible. Annette's story is one of sacrifice, dedication, and the life-altering adjustments a special needs parent must make when confronted with the unthinkable. But most of all, it's about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity. Annette and Elizabeth's powerful story provides hope, solace, and a path forward for parents of special needs children, and I know that it will resonate with you, too.

"Through sharing my story I've learned that there are a lot more people out there that feel like I do, that feel lonely or disconnected and scared. For me, the answer was always connecting with other moms, parents, and community members who are going through similar things that I was going through. I want to create an army of advocates, well-informed family and community members that are going to advance the disability community."

— ANNETTE HINES

In this edition of Parenting Impossible, Annette speaks with a very special guest, her husband and business partner, Mark Worthington. Mark is Senior Counsel at Special Needs Law Group of Massachusetts and is a Professor of Law at Western New England University School of Law. He has also been named to the Massachusetts Super Lawyers list every year since 2008.

Annette and Mark begin with their perspectives on a topic they've been hearing a lot about from community partners, clients, and within their own social circle: the importance of having your legal healthcare decisions properly documented. During the COVID-19 pandemic, the healthcare system's procedures have drastically changed, preventing people from getting in touch with loved ones that may be hospitalized or in assisted living facilities.

They begin by breaking down the difference between having a Healthcare Agent set up or guardianship in place. While both give others the legal right to make decisions regarding healthcare, the process and powers vary. Mark also explains why it's so crucial to have these documents in place before a pandemic or tragedy strikes.

Annette and Mark then jump into the world of HIPAA authorizations, which is consent from a patient to release information to authorized individuals. Without this legal authorization, the hospital or medical facility will be fined. While these authorizations hold no decision making power, Mark explains why they are essential for family members.

Finally, the couple dives into a discussion on living wills and what they really entail. They also give advice on how to decide who to choose for these types of documents and where to go if you don't have someone you trust.

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.

It's been months since many of us across the nation have had to change our way of life. It's a difficult time for everyone, but having a child with special needs comes with additional obstacles.

In this edition of Parenting Impossible, Annette speaks with licensed clinical psychologist Dr. Sharon Saline. Dr. Saline is a top expert on ADHD, anxiety, learning differences and mental health challenges and their impact on school and family dynamics.

Annette and Dr. Saline begin their conversation with a discussion about school cancellations and the added difficulties children with neurodiversity are facing during these unprecedented times. Some of these issues include missing their friends, lacking classroom cues from other students, and harboring feelings of anxiety, hopelessness, and anger.

Dr. Saline also shares her thoughts about creating a long-term plan and the importance of accepting the lack of answers available to us right now. She gives suggestions about ways special needs parents can navigate through this pandemic, especially with kids who are neurodiverse. It's crucial to take into consideration, neurodiverse children need more help along the way, and that requires positive feedback.

Annette and the doctor also touch on the importance of self-care and what it really looks like. Dr. Saline stresses the need for parents to first help themselves before helping their children. People are living online today more than ever, and that comes with a lot of judgment and self-doubt. Limiting your interactions on social media is just one way to prevent getting sucked into negativity energy according to Dr. Saline.

You can learn about Dr. Sharon Saline https://drsharonsaline.com/about-dr-saline/bio-press-kit/

In this edition of Parenting Impossible, Annette talks with The Arc of Massachusetts Executive Director Leo Sarkissian and Policy Officer Ellen Taverna about issues affecting the special needs community during the COVID-19 epidemic. The mission of The Arc is to enhance the lives of people with intellectual and developmental disabilities and their families, which includes community support and services fostering social inclusion and equity across all aspects of society.

Ellen begins the podcast with an update about how The Arc is keeping the special needs community informed on changes to policies and services while so many are self-quarantining across the nation. She touches on how government-funded relief packages are being distributed when it comes to paid leave for caregivers.

Annette and Leo dive into why the disability community is being disproportionately impacted by COVID-19, and what's happening when someone with special needs has to visit a hospital. Leo addresses some common concerns like, what you should do if you find yourself in this situation, and what you should say if you're not allowed to accompany that person.

Annette, Leo, and Ellen also discuss the challenges of a friend or family member currently living in a group home. They breakdown the frustration about not getting the details of what's going on inside, and what The Arc is doing to help. Leo offers advice about how to get the answers you need and who you should turn to if you're worried.

They also share how The Arc is helping special needs families across the nation which includes their COVID-19 webpage. According to Ellen, the site is constantly updated as things evolve regarding the impacts on healthcare, daily life, financial matters, and more.

Links

https://specialneedscompanies.com/blog/

https://specialneedscompanies.com/ep-46-parents-how-to-be-your-childs-best-advocate/

https://specialneedscompanies.com/ep-47-keeping-your-plan-updated/

Annette's podcast journey takes her all the way to the United Kingdom this time as her guest this week is Giuliana Wheater. Giuliana is an author, award winning therapist, teacher, trainer, public speaker & fundraiser. She is Founder of Therapies for Special Needs and Rainbow Kids Touch Therapy & Relaxation. She is the author of the book, Indian Head Massage for Special Needs.

Giuliana first introduces listeners to her son Ollie who is on the autism spectrum and has a talent for the written word. She took opportunities from her own experiences to go into to teacher training days in the UK and help those teachers have a better understanding of students like Ollie. Giuliana also discusses why she wanted Ollie to gain skills to be independent and she outlines why that was important in the podcast. She discusses why it was important to treat him like any other person and she talks about his incredible ability to write and craft stories.

Giuliana speaks about her views on inclusion in schools. She says while she is a huge advocate for inclusion, every child is different, and each student requires a different education according to their specific abilities and needs. She makes it a point to say that she has never given up on any child and no one should. Children should not be defined by any label. And she shares a very special story about Ollie's doctor and how both Ollie's life and his life were changed by the relationship.

She talks about her different therapies for those with special needs including many that are now online because of the COVID-19 crisis. She offers meditation, yoga for autism as well as ADHD, relaxation therapies as well as sound therapy. She talks about the power of storytelling as well as the power of touch to help us through stressful times.

You will find that Giuliana is incredibly passionate about what she does and cares deeply about helping others in this world of different abilities.

You can find Giuliana at her website: https://www.therapiesforspecialneeds.co.uk/

Find more about her therapies online here: https://www.facebook.com/groups/rainbowtherapieskidsandfamilies/?ref=share

https://www.facebook.com/akoautismexpo/

Annette takes a few minutes at the beginning to update listeners about social security during the COVID-19 crisis and what you can do to access your benefits as well as get answers from the social security office. As of the date of this podcast, the offices are closed due to the Coronavirus outbreak. Annette suggests setting up an account online with social security so you can access certain information. She offers tip for navigating the system during this time.

Annette on this podcast talks about how to keep your planning updated for times of crisis and beyond. The Coronavirus crisis has caused many to take a step back and take a deeper look at their planning. Your plans always need to be buttoned up and, up to date but never more important than when the country and the world goes into a crisis.

Annette runs through some of the most important items you need to be thinking of in your special needs planning. The first item she points out is to make sure you have a will and to make sure it is up to date. But it may not be the most important document in your plan.

One of the more important items you should be looking at are incapacity documents. These are your healthcare proxy, power of attorney and your HIPA releases. But keep in mind, these documents are dictated by state laws and should be updated if you have moved. Annette goes through these documents in more detail in the podcast.

The next item is guardianship and as Annette points out, this is different in every state as well. For example, standby guardians or backup plan can be different depending on the state so it is important to find out how state laws outline this. It is a good idea to speak with your attorney about guardianship for the best advice.

Annette talks about having your trust planning in order. And specifically, special needs trusts. Laws may not have changed but the way public benefits can change over the course of time so it is important to revisit this document over time.

Annette also discusses the Letter of Intent as another important document you should have. Everything from healthcare wishes, other wants and needs and specific directions should be in this letter. These are for anyone you have caregiving responsibilities for. They are wishes you have for your special needs loved one.

Want to ask Annette a question? Find her at: https://specialneedscompanies.com/

Annette is back and talking about special needs advocacy with Leslie M. Leslie, project director for The Federation for Children with Special Needs based in Massachusetts. This is an important podcast about parenting, special needs and advocacy.

Annette and Leslie discuss the importance of advocating for what you feel you need for your special needs child and they discuss important tips to remember when advocating as well as ways to make meetings with administrators and others more effective.

Leslie takes listeners through her top tips for effective advocacy for your special needs child.

She says to know who you are talking to when you get into meetings such as IEP meetings and educate yourself on how that system works. Also, when it comes to knowing who is at the table, find out if that special education director is an attorney because it is becoming more of a trend.

Leslie says to try hard to build relationships with everyone regardless of the situation. That also includes meetings about healthcare where you may need to be an advocate.

Take time to listen carefully and know exactly who in the room is authorized to make any decisions for your child.

Leslie says to be the expert on your child and the situation. Always know what you are walking into if you can. You should be the one that knows your child best. And do everything you can to not go into any meetings with administrators alone.

Leslie also advises listeners to get creative with solutions. For example, can you or your insurance company purchase needed equipment for your child to use in school and then take it home for further use? Annette points out that you have more answers than you think you have, so create solutions.

Effective communication is vital to advocating properly for your child. Watch the tone of your voice and ask administrators to explain anything you do not understand and always be courteous. Be a problem solver and be prepared to focus on the goals rather than letting emotions take over a meeting.

Leslie and Annette also make a point to let listeners know that you should be prepared to make arguments to reach your goals but always stay positive. In the end, know that teachers and administrators are trying hard to meet your goals for your child and that compromise may be a solution.

Learn more about The Federation for Children with Special Needs here: www.fcsn.org

The Center for Appropriate Dispute Resolution in Special Education as Leslie mentioned is here. https://www.cadreworks.org/