Parenting Impossible – The Special Needs Survival Podcast

Middle school can be a challenging age regardless of whether our student has special needs and Annette's guest this time knows just how to help those students who are in this age group.

Katy Boucher is the founder of The Accord School based in Norwell Massachusetts. The Accord School as Katy puts it, teaches students critical thinking skills and gets them ready for real life experiences and challenges. The school provides an education in all the typical areas a school would provide but also focuses heavily on the areas of social skills, life skills and educational outings. Her students tend to have special needs although not every student carries a diagnosis.

Katy talks about how she founded the Accord School after offering social skills groups and classes on her own for many years. She grew her social skills training to a point where she was driving to many areas of her region, but she also felt that individual training did not solve all the challenges she wanted to address with kids. Katy's social skills groups grew to over 80 kids before starting The Accord School.

Katy spends some time during the interview to discuss her views on cell phone use and what age is appropriate for responsible cell phone use. She talks about what can happen in certain settings when cell phones are used inappropriately including the topic of online bullying.

Katy brings up a troubling story from the website https://www.waituntil8th.org/ of a middle school student who is shocked to find out that he was the star of a viral video of him slipping in the school cafeteria and spilling soup on himself. The contrast of the student who posted the video and feeling great to the other student who is horrified and embarrassed that his misfortune is all over the internet is a reminder of the downside of having mobile phones and social media at such an early age.

The link to that full story can be found here: https://www.waituntil8th.org/blog/2018/11/12/middle-school-misfortunes-then-and-now-one-teachers-take

Annette talks with Katy about the critical skills that a middle school aged child needs to focus on to grow into a successful adult. Katy's list is below and she discusses them at length.

Flexibility+ Adaptation

Social Thinking+ Communication

Collaboration+ Teamwork

Self-Management

Critical Thinking

Asking Important Questions

Practical+ Purposeful Technology

Creativity+ Innovation

Emotional Awareness+Regulation

Empathy+ Perspective Taking

Find out more about the Accord School here. http://theaccordschool.org/

And learn more about Katy Boucher here: http://katyboucher.com/

We all have "Different Brains" and Annette's guest this time knows that very well. Different Brains founder Harold "Hackie" Reitman, M.D. takes time out of his very busy schedule to have a wide-ranging discussion with Annette about some of the incredible work the organization does.

Different Brains is an organization that has dedicated its resources to advocating and educating about the topic of neurodiversity. Different Brains produces a whole host of content including videos, blogs, and podcasts as well as a regular series called This Week In Neurodiversity. As Hackie explains, they use different medium to reach people with the information that they are seeking.

Hackie talks with Annette about his fascinating background as a surgeon, a professional boxer and a filmmaker and how he decided to create Different Brains. When Hackie was a professional boxer, his daughter was battling 23 brain tumors, and Hackie came up with the idea to donate all his earnings to children's charities. Through this he was able to get lots of publicity for his cause.

After his daughter successfully battled her tumors, she attended and graduated college. But when she received a diagnosis of Asperger's syndrome, Hackie decided to launch Different Brains because he felt there was a disconnect between the various communities that worked and advocated for those under the category of Neurodiversity. He and others felt that there could be tremendous benefit to working together and sharing what has been learned to benefit all. He calls this "knocking down the silos".

Hackie also talks on the podcast about many other topics in his interview with Annette including how he got the film The Square Root of 2 made, a movie about a young girl challenged with undiagnosed Asperger's Syndrome and his other attempts at the movie business. He also chats about how he published his book Aspertools: The Practical Guide for Understanding and Embracing Asperger's, Autism Spectrum Disorders, and Neurodiversity.

Hackie brings up the parent's group Denise's List which provides tremendous resources for parents of those on the autism spectrum.

You can find out more below about that list.

https://www.differentbrains.org/denises-list-empowering-parents-children-autism-denise-karp-edb-90/

Learn more about Different Brains and enjoy the endless list of educational content they have created here: https://www.differentbrains.org/

Annette had a great conversation with Austin Carr, a young energetic man who is a true advocate for people with disabilities. Austin is very involved in the disability community both in mentorship programs as well as helping out with resources for those seeking transitions into adult life and he talks with Annette about these important topics.

Austin currently lives in the Boston area with his twin brother and parents. He graduated from Cotting School and attended the Lesley Threshold program. And he hosts his own radio show "Austin in the Afternoon" on Radio Perkins. His own mentor, Kennedy Elsey from a prominent Boston radio station is often by his side in studio.

Austin has been actively engaged in the disability community for the last several years and is a proven advocate for the disability community. Austin has recently interned with PYD (Partners For Youth with Disabilities) as a Mentor Recruiter, Ambassador, and a planning committee member. He was a Service Leader, Youth Board Member, and currently volunteers as a Youth Group Peer Leader and has a position as a Youth Trainer in the Boston Public Schools with EPIC (Empowering People for Inclusive Communities). He has spoken on many panels regarding Transition with the Federation of Children with Special Needs, and is an active Youth Network Group member and advocate with Easter Seals.

Austin speaks with Annette about what makes a good mentorship program and the importance of having a mentor. He talks about what makes a good match and ways to find a great mentor.

Annette and Austin also discuss transition planning and why that is such an important part of our lives as we get older and they discuss the importance of inclusive communities.

And Austin makes sure he discusses self-advocacy with Annette. And he has a few tips. First, be part of your own plan, tell people what you want and let them know what you do NOT want. Always speak up for yourself.

As a bonus, Annette answers some listener questions that include, how do you get a book published and how do you start a podcast.

You can find Austin's radio show on Radio Perkins here: https://www.mixcloud.com/radioperkins/

Austin also writes for Partners for Youth Disability and you can read is articles here.

https://www.pyd.org/author/acarr/

This week, Annette gets to have a conversation with Mary Susan McConnell, host of the popular Mama Bear Podcast. The Mama Bear Podcast is a place where women who are raising special needs children can come and hear stories and advice from other women in similar situations. Mary Susan says that men are welcome too of course!

Mary Susan talks with Annette about her journey with her husband to adopt their daughter Abiella from a government orphanage in Ghana. It is a beautiful story that is heart wrenching at times as she speaks about the challenges they faced and what it took to finally secure their adoption and bring her home. Abi has Cerebral Palsy and they wanted to get her to her new home so they could provide more care.

Mary Susan started the Mama Bear Podcast because she felt isolated and didn't know where to turn at times. At one point, having not left her home for over two weeks, she realized that there must be many other moms out there just like her. She needed to find others that "Got It."

After connecting with many in social media groups, she started thinking about connecting through a podcast. She started her podcast one night after some encouragement from her husband and it has grown tremendously since that time and now has over 100 episodes.

Annette and Mary Susan talk about how important it is for parents of special needs children to get out and find others that you can talk with and rely on for support. They talk about the many challenges of special needs parents such as taking vacations and date nights and how we can find joy in connecting with others.

They wrap up by talking about how powerful relationships can be in the special needs community.

Mary Susan has also created The Dream Team Coloring Book as a way for everyone to understand how inclusion works. It is available on her website for free and is a great tool for school aged children to learn more about how to be more inclusive.

You can connect with Mary Susan McConnell on her website, find her podcast there as well as The Dream Team Coloring Book.

https://www.marysusanmcconnell.com/

Annette welcomes back Mark Worthington from Special Needs Law Group to discuss the sometimes confusing topic of social security for people with disabilities. There are so many rules and other facts about social security that you need to know about and in particular, those with special needs. Mark and Annette use their years of expertise in the area to clarify some of the mysteries.

Annette begins by giving an overview of social security which is meant to help support those who are retired or individuals with disabilities. Annette points out that there are several programs under the category of social security that work to support those with disabilities.

Mark discusses the difference between SSI and SSDI. There are many forms as Mark explains that take into account a work history of the individual or in some cases, even the work history of the individual's parents if they have a disability. Mark and Annette discuss how various forms of income and assets could determine what an individual qualifies for.

Mark and Annette talk about what the federal government lays out as a qualifying disability including a physical or mental disability as well as the life expectancy of someone with a severe disability. All of these factors need to dictate a person's ability to work unless it is a person under the age of 18.

Annette points out that there are various diagnoses that allow a person better or quicker access to the system but points out that in most cases, it can still be a lengthy process.

Annette describes what deeming is when an applicant may be under the age of 18 and the income and assets of parents and guardians is deemed accessible to support that individual. And Mark and Annette talk about the asset rules when it comes to social security.

Annette and Mark also discuss the ways in which a person can qualify for Medicaid and talk about the states that have such programs.

Learn more about the ways in which Annette and Mark advocate and support special needs families here: https://specialneeds-law.com/special-needs-law/advocacy-care-management/

Annette takes time out for a short podcast to chat about something very personal to her: her daughter Elizabeth. Elizabeth passed away at the age of 17. Elizabeth had profound disabilities, having mitochondrial disease.

As the holidays approach, Annette takes time to share her experiences as a special needs mother and what the holidays can bring as the result of losing a loved one that you cared for so deeply.

As Annette explains, Elizabeth had a love for life and made the most of every day she had here with her family and friends. She loved school and always loved a good joke.

Annette talks about how the holidays can be a difficult time when you have lost a loved one with special needs. As you might imagine, there are so many memories and so many events that trigger those memories and they seem to all come out during the holiday season.

Annette talks about what has helped her during the holidays. She talks about dealing with the grief and what helps her remember Elizabeth as well as honor her memory. First thing Annette suggests is to tell great stories about that person. It helps you remember that person but also can give you a good laugh.

Annette also suggests creating a celebration meal that includes your child's favorite food items. This could be any time of the year and include many holidays.

Annette has many more tips from her experience she shares on this podcast about how to remember a loved one with special needs. Please take time to listen and share. And if you have lost a loved one with special needs, please reach out to Annette and share your story with her.

Find Annette's bestselling book, Butterflies and Second Chances about her life experience raising a daughter with special needs here: https://specialneedscompanies.com/book/

This week, Annette sits down with Lotte Diomede and Deb Hochhauser of SMILE Mass an organization that provides recreational accessibility and disability friendly vacation experiences.

SMILE Mass was founded in 2009 and stands for Small Miracles In Life Exist. Founder Lotte Diomede started by creating awareness around the building of a playground that would accommodate all in her community of Sudbury Massachusetts. After creating substantial awareness and raising enough funds, the dream became a reality and the playground was established and so was SMILE Mass.

The organization also provides beach wheelchairs for various beaches and recreational areas around New England, created a vacation home on Cape Cod that is totally accessible and has plans for other projects in the future.

Lotte and Deb talk about what it takes to create these opportunities for those in the disability community and the efforts involved in raising adequate funding to do so. They discuss the support they have received over the years and of course the challenges they face in trying to meet their mission.

Lotte talks about how quickly the vacation home became popular in the disability community, even selling out one season in 14 minutes.

Lotte and Deb also chat with Annette about their future plans including a full accessible gym and what she calls a "Forever Home" for adults with special needs.

The conversation turns to surviving the holidays when you have a family member with special needs.

Deb lays out her tips for having a successful holiday season which include, creating new traditions if needed, and try to get more control over your ideal holiday gathering. She also says that for her family, they have limited travel over the years as well as created smaller family gatherings over the holidays. Deb says that it is imperative that your loved one with special needs has a space to be quite during holiday gatherings. And most important, don't worry what other members of the family think about your decisions.

If you want to find out more about the great work of SMILE Mass, please visit their website at www.smilemass.org.

Lotte says that she is always ready to chat with people in other states about how to get these types of projects completed.

On this episode of Parenting Impossible, Annette chats with Blaine Brockman, a passionate advocate for the safety of individuals with special needs as well as the elderly. Blaine and Annette talk about safety in the community as well as the necessary steps for community integration.

Blaine discusses with Annette the concepts of community living, and supportive living where individuals are able to live and thrive out in the community with needed support. They discuss the various options as well as how some of these housing arrangements can be funded such as Medicaid. Are there family supports in place as well as the relationship between landlord and tenant.

They also dig into how a person can live out in the community with dignity and how to assess the risks of someone with special needs living independently. Those risks can include all types of assaults, relationship risks and the nature of those risks that could present themselves.

Blaine talks about the services that can support a family such as groups and other outlets and how a family can balance risks, the system and the needs of their special needs loved one.

Blaine also makes sure to point out that as a special needs family, you need to ask for what you feel you need and have a right to have, challenge the system when appropriate and advocate for your loved one as well as be assertive when necessary. He says, accept nothing less than safe.

Other topics Annette and Blaine discuss are day programs and how those programs can be funded.

Attorney Blaine Brockman is a member of the Board of Directors of the National Academy of Elder Law Attorneys (NAELA) and a member of the Academy of Special Needs Planners (ASNP). He is also Co-chair of the NAELA Special Needs Law Steering Committee and Co-chair of the NAELA Federal Advocacy Committee. He is the immediate past Chair of the OSBA Elder and Special Needs Law Committee.

Blaine had a 30-year career with the State of Ohio. In that time, he was the Assistant Executive Director of the Ohio Housing Finance Agency, a human resource administrator for two agencies and a law enforcement officer with the Ohio Department Natural Resources.

You can reach out to Blaine Brockman at: [email protected]

This week, Annette continues her conversation with Eric Endlich of Top College Consultants. Dr. Endlich helps many students across the country navigate the college admission system, including those on the autism spectrum and those that have ADHD.

Dr. Endlich and Annette are discussing college transition programs this week and whether a student is college ready or college capable. A student needs to ask themselves if they are in fact ready to attend college as well as living independently and seeking help when needed.

Dr. Endlich discusses the benefits of taking a gap year after high school including getting more experience in the working world, gaining a little more maturity and honing in on executive functioning skills as well as other valuable life experience that could help in college. He even talks about how some institution pay certain students to take a gap year!

They talk about how to design a gap year and how to work with an educational consultant to do so. And they chat about the many types of transition fairs and events out there for students and parents to attend. Annette brings up the topic on many parents minds – are they ready for the transition too?!How can parents give their student the independence as well as the tools they might need To thrive in a post high school environment.

Last, they discuss what accommodations you can ask for in school including counseling as well as residential support and coaching.

Find out more about Eric and Top College Consultants on his website which include an extensive list of colleges that have programs for individuals on the autism spectrum.

https://www.topcollegeconsultants.com/

Like so many people that Annette Hines has met on her special needs journey, Julie Gortze has turned her struggle into her life's work and a mission to help others. Julie is the president and founder of Rare New England, an organization that provides support and resources for individuals and family members impacted by rare disease.

Julie has personal experience with a complex disease and has learned first-hand what patients and families must deal with while searching for a cause for symptoms. As a nurse, she also understands that in some cases, the average medical personnel do not have the familiarity or sufficient education for recognizing, diagnosing and treating a complex medical disorder.

Julie discusses with Annette her own personal experiences and challenges in getting an accurate diagnosis for herself as well as the amount of time it took.

Annette and Julie talk about how this is a real challenge for many out there still and what you can do to get the support you need for yourself and the entire family.

Julie talks about the need to join groups with like-minded individuals, connect with others in similar situations and get involved however you can to help others in need. Julie started her group with only twenty people who got together for dinner one night!

And Julie and Annette make it a point to be careful what information you get from searching the internet on rare diseases.

There is support out there and you can find out more about Rare New England and all their offerings at: http://www.rarenewengland.org/