Special Parents Confidential

Formed Families Forward – SPC Episode 72.

Formed Families Forward is a support organization located in Fairfax, Virginia. They help families in Northern Virginia who have adopted, are fostering, or are kinship families for special needs children. They provide supports, counseling, training, and education.

Adoptive Families, Foster Families, Kinship Families.

Being a parent of a special needs kid is a huge challenge.  But an entirely different situation occurs when you’re the adoptive parents, foster parents, or kinship family of a special needs child. Often, far less information is known about the child until after they’re already in their new home. What are the differences between Adoptive, Foster, and Kinship families?

How does Formed Families Forward Help?

Support groups like Formed Families Forward exist as a resource for formed families. Focusing on their local communities for a personal connection. As a result, families get a sense of relief to know they’re not alone.

Meet Kelly Henderson and Kimberly Harrell

In this episode we talk to two people involved with Formed Families Forward. Kelly Henderson, who is the Executive Director, and Kimberly Harrell, who is the Board Chair. They discuss the services FFFVA provides. Also the problems and challenges that adoptive, foster, and kinship families have, and a lot more. It’s great information. You’ll learn that there’s a lot of help available, even if you’re not in the Commonwealth of Virginia.

LINKS MENTIONED IN THIS EPISODE:

Organizations that help Adoptive Parents, Foster Parents, and Kinship Families:

Formed Families Forward

North American Council on Adoptive Children

National Foster Parent Association

Child Welfare League of America

Generations United

CENTER FOR PARENT INFORMATION & RESOURCES aka Parent Training Information Center.

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Special Parents Confidential 71 Patrick Parkes Part 1.

Patrick Parkes shares his life story. All parents worry about their kids and how their futures will turn out. But for parents of special needs kids, those worries can be much more immediate. It’s not just ‘will my kid make it through school’ – but will my kid make it through this grade? Will my child make it through the next grade? What about high school? What will life be like after high school? Can we even think about college or tech school or even some kind of career?

What It’s Really Like.

That’s why I think one of the best things for parents is to be able to hear from adults with special needs who have gone through the challenges and have been able to make a successful life for themselves. Knowing that others have made it can be very reassuring. Over the next few episodes of Special Parents Confidential, we’re going to do just that. My guest is Patrick Parkes, who I met earlier this year.

Introducing Patrick Parkes

Patrick was born with cerebral palsy and has had numerous challenges throughout his life. He made it through school and into college and he is now a substitute middle school teacher in West Michigan and he’s also a Para-Olympian in the sport of Boccia. Patrick’s story and his unique perspective as someone who had special needs in school and who is now a school teacher is quite informative and I think everyone who hears it is going to learn something interesting.

LINKS FOR MORE INFORMATION

Patrick Parkes on LinkedIn

USA Boccia Website

Patrick Parkes on Twitter

Help Support SPC!

We call Special Parents Confidential the resource podcast for parents of special needs kids. And parents are the ones who can help us continue. If you’ve found any episodes of SPC in any way valuable to you, please help spread the word about us. Share our website and your favorite episodes on your favorite social media platforms. We have some handy easy link buttons on the page for every episode. Or just copy and paste the link to our site to your status updates.

Thanks for listening and for helping out!

Autism Goggles. Part 2.

We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.

Put On Your Autism Goggles

The best way to understand any situation is to talk to someone who has experience with it. In order to understand what it’s like to have Autism, you should hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.

There’s Much More Beneath The Surface

What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. It is not a disability. Browsing Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.

Part 2. Daniel Share-Strom

For SPC Episode 69, we talked to Maxine Share, who started Autism Goggles as an outgrowth of her advocacy work that began with her son.

In Part 2 of our interview, we talk to Maxine Share’s son, Daniel Share-Strom. His own struggles with Autism and Aspberger’s Syndrome were the basis of Maxine’s advocacy for parents. From his bio on the Website: “Daniel is a writer, motivational speaker, workshop facilitator, and co-founder of Autism Goggles, a social initiative determined to ‘reframe understanding of autism’ to focus on ability and strengths.

“Diagnosed with autism at a young age, Daniel has been moving audiences with his self-awareness, poignant insight, and humour for nearly 15 years.  He does this with full-day workshops and speeches which help parent groups, universities, autism organizations, workplaces, and health care professionals to understand the many features and traits of autism using plain language and practical examples. Daniel is committed to equality, fairness, and social justice for all people as he works to shift society toward acceptance and understanding of neurodiversity.  He speaks up and speaks out for those who have not yet found their voice.”

Links Mentioned In This Episode

Daniel Share-Strom’s Ted Talk Speech

Autism Goggles Article on Anxiety

Teaching A Student With Autism – For Teachers.

Engagement Page – Where To Connect with Autism Go...

Autism Goggles. Part 1

We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.

Put On Your Autism Goggles

The best way to understand any situation is to talk to someone who has experience with it. And the best way to understand what it’s like to have Autism, is to hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.

There’s Much More Beneath The Surface

What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. Autism is not a disability. Through Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.

Part 1 – Maxine Share

We’ve divided this interview into to separate episodes. In Part 1, you’ll hear from Maxine Share, as she tells her story of how she became a special education advocate in her home of York, Ontario, Canada and the work she does with Autism Goggles. Part 2 will feature our interview with her son, Daniel Share-Strom.

Links Mentioned In The Episode

Autism Goggles Website

What Good Teachers Know About Teaching Kids With Autism – blog article.

Girls And Autism – Missed Diagnosis Can Be A Nightmare – blog article.

Reminder.

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link here to subs...

The Pushy Lawyer.

Meet Kelley Simoneaux, aka, The Pushy Lawyer.

Some people go into disability advocacy and disability law because they feel compelled to help serve in a community that has many areas that need representation.

Then there’s Kelley Simoneaux, who’s known as The Pushy Lawyer. Kelley suffered a spinal injury in a car accident at age 16. The accident left her a paraplegic and confined to a wheelchair. But she decided to dedicate her life since then to becoming a lawyer, specializing in product safety law, and spinal injury law. She has also been quite an advocate for disability rights and accessibility laws, due to her own experiences in law school and in her career as a lawyer.

From Injury To Advocacy.

Using her nickname, The Pushy Lawyer (inspired by her use of a wheelchair), Kelley has made a difference, and not just in the areas of law that she specializes in. She’s even made a difference in the way courtrooms are run, and designed. As she says at the very beginning of her career, a judge couldn’t understand why she did not rise when he entered the courtroom as all the other people had done. Just by being in court, she’s been able to raise awareness of those with disabilities and special needs virtually every day.

Where’s The Access?

When Kelley was starting out in her legal career, many courtrooms and government buildings didn’t have adequate access. This caused problems for persons in wheelchairs, or on crutches, or even using walkers.  Through her work, and primarily without having to file legal action, the court system in several states began to rethink and redo their designs to allow for greater accessibility. Not just for lawyers, either, but also for plaintiffs and defendants, and even jurors and the public. Being the Pushy Lawyer has helped her inspire improvements, and, as you’ll learn, more still needs to be done.

LinksK

Kelley Simoneaux Email

 Twitter feed For The Pushy Lawyer

Kelley Simomneaux on Instagram

News Report on Kelley’s Uber situation

Reminder

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link

When the Nightmare Happens.

This episode could probably be called Parent Story number four, but I’ve chosen to call it When The Nightmare Happens. Because this is the kind of parent story that you don’t want to happen.

Meet Kiri Salazar.

Kiri Salazar is a person that my wife Sarah and I met here in the Grand Rapids Michigan area. She is a widow and her son Alexei has non verbal autism. Like many people she has a blog, where she writes about her life and her son’s challenges. This past November, 2018, Kiri shared a story about an incident with her son that was about as frightening and stressful as it can get. Fortunately, as you will hear, the incident eventually turned out fairly well. But I felt it should be shared, which is why I invited her to be on this episode, and she agreed to do it.

What Would You Do?

I should warn you that Kiri’s story is difficult to listen to. But her hope is that by sharing it she can perhaps help other families who may be faced with a similar situation. Our greater hope is that some officials in government, who are in a position do something about the challenges we talk about, can help to remedy these situations by coming up with ways to provide better support to families.

Links

You can visit Kiri’s blog at: The Dust Season 

Kiri’s original blog post about her son’s incident: With Prejudice

Reminder

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link here to subscribe to our podcast for free.

Mental Health America.

Mental Health is a subject that has taken center stage in large areas of our conversation. Everywhere you look in the media, people are talking about mental health. Certainly within the special needs community, the awareness of mental health for both people with special needs, and their caregivers, has become a major priority.

But where do the standards of care come from? How has the conversation changed over the years to get where were are now; that mental health is a major issue? And who is providing the oversight for how this condition is diagnosed and treated?

Mental Health Is Physical Health.

One of the major organizations for mental health awareness is Mental Heath America. Founded in 1909, MHA is the nation’s leading community-based non-profit dedicated to helping all Americans achieve mental well-being. MHA’s work is driven by a commitment to promoting prevention services for all. This includes early identification and intervention for those at risk, and integrated care and treatment for those who need it. They also work for policy standards and changes, with both local governments, and on the Federal level.

Online Screening

In this episode we talk to Theresa Nguyen, the Vice President of Policy and Programs with Mental Health America. She discusses the growing awareness of mental health issues, and some of the significant gains that have been made in diagnosis and treatments. For example, Theresa talks about MHA‘s new Online Screening Tools that can help you determine whether you are experiencing symptoms of a mental health condition. This offers many supports including DIY tools to help you get better.

Links Mentioned In This Episode.

MENTAL HEALTH AMERICA – The main website for MHA.

MENTAL HEALTH AMERICA’S ONLINE SCREENING TOOLS – Their free, private, online screening tools. These can help you determine if you are experiencing symptoms of a mental health condition.

ABOUT MENTAL HEALTH AMERICA’S ONLINE SCREENING PROGRAM  – Explains all the details about how the screening is done and the results and where to get further help.

Reminder.

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link here to subscribe to our podcast for free.

Growing Roots.

Growing Roots is a new program in West Michigan that’s introducing therapeutic farming. We al know that getting your hands in the soil can help you relax. You get a feeling of accomplishment and it helps to relieve stress.  The same thing holds true with caring for animals, whether it’s a pet or a farm animal of some kind.

Back To The Farm.

In the past few years more studies are showing that agriculture therapy and animal care therapy can offer tremendous help for people with physical and developmental disabilities. Growing Roots is all about taking these concepts to the next level.

Hands-On Therapy.

Here in West Michigan where we live, two women are trying to create a sustainable therapeutic farming program called Growing Roots. Jessica Roost and Sarah Baker are joining me on this episode to talk about how they’re getting their program started and their goal, which is to have a fully operational farm with a live-in residency program.

Accomplishment and Achievement.

Growing Roots is going to help provide a sense of achievement, accomplishment, and responsibility that will be a tremendous benefit.

Links Mentioned In The Episode

GROWING ROOTS – Link to their main page.

Growing Roots Get Involved – How to help out.

Facebook Page for Growing Roots Kent County, MI  

How Does Nature Impact Our Wellbeing? – Article from the University of Minnesota.

Reminder.

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link here to subscribe to our podcast for free.

Thanks for your support!

5p Syndrome aka Cri du Chat.

Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.

Defying Expectations.

But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.

Loving You Big 

Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.

Links mentioned in the podcast:

Leah’s 3 favorite posts from her blog:

The Irony of Language.  

Yes My Hands Are Full.

Welcome To The World, Baby Girl.

Video of Leah and her husband Zac, and their daughter Jordan.

Resources:

5p Minus Society. 

The Danger of a Single Story – Ted Talk by Chimamanda Ngozi Adichie.  

Reminder.

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link

Inclusive Education Project.

The Inclusive Education Project is a non-profit charity, founded by two special education lawyers, Amanda Selogie and Vickie Brett. It’s also the name of the podcast they both host that deals with subjects on special education law and advice.

Special Education Lawyers.

Amanda and Vickie started the Inclusive Education Project to, in their words, “Level the playing field” for families in California. As we all know, getting help for our kids in school can be very frustrating. The system is full of legal jargon and terminology that can be difficult to navigate. When you add to that the fact that many people simply cannot afford to hire an attorney to help them, you’ve got a lot of kids falling through the cracks and not getting the help they need.

Legal Help For Everyone.

Using their podcast, Amanda and Vickie are offering legal advice for special needs parents. They also offer workshops for parents, and pro bono legal help. As they say on their website: “Disability rights is the next frontier in civil rights. We believe education is the key to building an inclusive society and ensuring that all students are given an equal opportunity.”

Links Mentioned In The Podcast:

Inclusive Education Project  

Inclusive Education Project Podcast

Inclusive Education Project Facebook Page

Reminder.

Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.

A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.

Special Parents Confidential is now available on Spotify! Just follow the link here to subscribe to our podcast for free.

Thanks for your support!