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.
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.
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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.
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Special Parents Confidential is now available onSpotify! Just follow the link here to subscribe to our podcast for free.
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.
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.
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 onSpotify! Just follow the link here to subscribe to our podcast for free.
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.”
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 onSpotify! Just follow the link here to subscribe to our podcast for free.
“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”
The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.
Invisible Special Needs.
Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.
One Family’s EDS Story.
For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school.
To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler. There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.
We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly.
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
This episode of Special Parents Confidential is devoted to Military Families with special needs kids. Parents of children with special needs know first hand how challenging any situation can be from starting school, to getting the kinds of medical and therapeutic help their kids need, to just social life in general. Now add to that situation that every year or two you and your family might get uprooted and moved to another State, or even overseas. That’s the life for military families with a special needs child. Can you still get the same services in your next location that you were able to get for your child where you currently reside? What about Medical needs? Language problems? Education supports? Therapies?
Okinawa, Hawaii, Virginia…
Our guest for this episode, Catherine Lochner, has a lot of experience in this area. Neither she or her husband were actually in the military, but the company her husband works for contracts with the military and they lived on bases with other military families, as part of his career requirements. Their son, Cameron, was diagnosed with a rare brain tumor in 2000, and they have had to do everything from flying across the world to get emergency surgery, to dealing with special education services in the Department of Defense’s Education system, and relocating several times while all this was going on. She now works as a special needs and special education advocate in the Commonwealth of Virginia.
DODEA and Special Education Supports Around The World
Military families have tremendous challenges, even when everything is typical. Having a special needs child in the military is still challenging, but the Department of Defense Education Activity has some excellent supports for those parents. You’ll hear exactly what our military does for families with special needs kids and how things have improved in just the twenty some years since Catherine’s son was born.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Also be sure to look up special needs support groups such as Parent Training Centers in your area throughout the United States, as well as your local PTA or PTO.
We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
Every Kind of Special Need
These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences.
Welcome Jenny Moo
In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
Epilepsy Foundation– U.S. based online information and resource guide website.
Epilepsy Information Page– from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
We Really Are All In This Together.
Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.
Welcome Sandy Carlson
In this episode we hear from Sandy Carlson. She and her husband Steve have three boys, the oldest of which is Harrison, who has autism. Harrison is now in his 20s and has a full time job, but as you’ll hear from Sandy, they didn’t really know anything about what to expect for his future. Not much was known about the future for children with autism, even just 20 years ago, and the improvements that have come since then have made a real difference.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
We begin a new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
We Really Are All In This Together.
Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.
Welcome Back Carol Lippert.
Our first guest to share her parent story is appropriately enough, Carol Lippert, who was my guest on the very first episode of Special Parents Confidential. In that episode we talked about how she created and organized a support group in her community for parents of children with Autism. In this episode she shares her personal story of how she and her husband David are dealing with raising their son, Wyatt, who is autistic.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Recently Gerber Foods announced their first ever “Gerber Baby” who has Down Syndrome. In honor of this great milestone, we are taking a look back at Special Parents Confidential Episode 34.
Down Syndrome. Myths and Facts.
Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about it and how it affects those who have the disorder.
“What We Know” Is Likely Wrong
Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with it is nowhere near as bad as some people believe.
Factual Information.
Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan.
We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Thanks for your support!
Bullying and social problems in school are a continuing problem. While improvements have been made in how some school districts handle these issues, the problem is still unaddressed in many cities, towns, and states. So we’re reposting SPC Episode 53, in which we learned about the ‘be nice’ campaign.
be nice.
A new program called the ‘be nice’ campaign has been started in West Michigan to help end bullying. One of the hardest issues to deal with for parents of special needs kids – as well as parents of any child – is bullying in schools and online. What do you do if your child is the victim of bullying? For that matter, what do you do if you discover your child is bullying other children?How far does bullying affect a child? What kinds of impact does this have on a child’s mental health?
Learn About Mental Health.
Did you know that problems with bullying are the leading cause of suicide in children and teenagers? Bullying can also cause issues of depression, drug abuse, and other mental health problems that can affect people for their entire lives.
In this episode we’re going to talk to an expert in the subject of bullying. Christy Buck is the executive director of the Mental Health Foundation of West Michigan, and they have a new program that offers a solution. It’s called the ‘be nice’ campaign and it’s designed to to help kids, families, schools, and communities work to understand and end bullying. We’ll also learn about mental illnesses, how to recognize when problems escalate to thoughts of suicide and what to do in these situations.
We also talk about the common myths and stigmas associated with bullying, depression, and mental health issues that can cause problems for kids as well as adults. For example, a person doesn’t need to ‘bottom out’ before they should get help. We discuss ways to overcome these myths and stigmas. You’ll also learn how the ‘be nice’ campaign can be used by your school or other organizations.
National Suicide Prevention Hotline: 1-800-273-8255.
Reminder
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We’ve decided to start off the new year by reposting what I think is one of the most inspiring interviews I’ve done. Michigan Supreme Court Justice Richard Bernstein.
Blind Justice
In November of 2014 Richard Bernstein became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.
Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.
Special Education Advocate
However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”
Improving, Not Cutting, Special Education Support.
In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Deafness and Hearing Impairment are now very well understood, and once diagnosed, can be successfully managed. Everyone at some point in their lives experiences some form of hearing loss, either from their environment or due to advanced age. However many children are born every year with deafness or hearing impairment.
Technology Improvements.
Although many therapies and technologies exist to help correct deafness and hearing impairment, the same questions and issues still come up for parents of deaf and hearing impaired children as for all parents of special needs children: communication, comprehension, help in school, social acceptance, and so on. And what organizations exist that can help parents get the information that’s best suited for their children and their particular needs?
A Parent Who’s Been There.
Our guest on this episode of Special Parents Confidential, Julie Wiseman, has been through a lot of these issues. Her daughter, Kendall, was diagnosed at birth with deafness. Juli shares Kendall’s story and her own struggles with finding help, getting the right information, and many other issues that she and Kendall have faced.
Links Mentioned In This Episode:
New – Reviews.Com: The Best Hearing Aids of 2017 – a comprehensive review of the best over-the-counter hearing aids that are available right now.
Listen Up– Specializing in information for the deaf and hard of hearing, and especially geared to the needs of hearing impaired children and their families. Note: this website hasn’t been updated since 2010, but still has some valuable information.
When we talk about issues that can cause anxiety for parents of special needs kids, dealing with social situations in school and elsewhere is probably right at the top of the list. Will our children be accepted or will they be teased or shunned? Will our kids be able to handle the day to day interactions in the class room, in the cafeteria, or on the playground? What about bullying? And what are we supposed to do when our kids experience problems with these situations? Many of these social issues in school start early in pre-school and elementary school and can cause a lifetime of stress and problems for parents and children alike.
Social Workers And How They Help.
For many schools the person who can help guide our kids through their day in school is the social worker. They’re also the person who parents can talk to for help with making sure their special needs child can fit into the various social situations and can offer advice that parents can use to reinforce the school’s expectations at home. They are also often the ones who work with the parents of other students to facilitate better communication and understanding.
Advice From A Real Elementary School Social Worker
Our guest on this episode of Special Parents Confidential is Chris Kenward, an elementary school social worker who has many years of experience dealing with both special needs students and general education students. Many experts agree, the vast majority of social problems begin early in elementary school so the sooner a child with special needs can get help in dealing with social issues, the better their progress will be throughout their life. The information Chris shares here is vital for every parent of a special needs child, as well as for teachers, special education experts, care givers, and anyone who has a relationship with a special needs kid.
Links Mentioned In This Episode
Shut Up About Your Perfect Kid– The website by the authors of the book. Includes a page with links to where you can purchase a copy of their book.
Driven Story by Jon Singer– The website of the Sibling Support Project, where you can see stories from the book and order a copy.
The Holidays always mean family visits, and with that in mind, we thought our episode on a sibling’s perspective would be a good one to repost. This episode is from October of 2015, when we interviewed Aubrey Boerma, who grew up with an older brother who has Autism.
What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?
As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings.
There Are Answers.
In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.
Links To Websites Mentioned In This Podcast:
The Sibling Support Project–Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
The Holidays always mean family visits, and with that in mind, we thought the subject of Sibling Support would be a good one to repost. This is the first of two episodes on Sibling Support we did, back in July of 2015.
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
Communication Is Key
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
Groups That Can Help.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
A few days ago I came across the above video on Facebook called Amazing Things Happen, It does an incredible job of explaining Autism in a way that kids could understand.
Amazing Things Happen, since it was posted online, has had over 5 million views. It’s been translated into 28 subtitled languages, and 10 fully dubbed versions. I wanted to know more about the person who created the video, Alex Amelines, and how he was able to create such a well-done piece.
“I worked in Editorial design for 5 years. Back in Colombia. Then I moved to the United Kingdom to do an animation course after which I ended up settling up in. Both in the animation field and in the UK.
“I now work as an independent animator and director, my animations have gone in all directions: television, exhibitions, installations, games, films, planes, etc. In 2012 I established Studio Tinto in an attempt to become rich and famous.
“I’ve achieved neither.”
This wasn’t quite all the information I was looking for, so I sent Alex a message. He replied that his preference was to not do a podcast interview because he was worried that his accent was a little to hard to understand. But he would be happy to explain the process of how he came up with the animation.
By the way – Alex mentions the term SENCO, which in the U.K. stands for Special Education Needs Coordinator.
The Amazing Things Happen Background Story.
“I must warn you that my story is not an exciting one and that I’d prefer the focus were on the animation rather than me or my family but I’ll try to tell you what drove me anyway:
“A few years ago, my son’s school organised an assembly to help explain autism to the children, which struck me as a wonderful idea. The talk was very interesting and the local expert who led it obviously knew her stuff but it was limited by a lack of clear, visual materials. The children got most excited at a slide of Lego toys and enjoyed a scene from the animated series Arthur, where Arthur meets a boy who doesn’t make eye contact and only wants to talk about trains.
“My immediate thought was, this could all be an animation – and might even retain the children’s interest better that way. I’ve always loved working on creative side projects to distract me from client work and thought this would be both fun and potentially useful for the school. Perhaps even a few more schools, locally. I had no big plans beyond that.
“I met with the school’s SENCO and told her my idea, which she as was excited as I was. I had to do a lot of research, a lot of books, a lot of TED talks, blogs, articles, etc. I met with the SENCO several times to discuss my progress. The hardest part was to condense the script into 5 minutes, as English is my second language, I’m not a trained writer and most importantly, because there is so much to say about autism! The spectrum is so unforgivingly vast it seemed impossible keep it all in, everything seemed so relevant. But I knew from experience that this could only work if it was short enough to be feasible to finish on my own and also to retain the attention of small children.
“My prerogatives were: keep it short, only positive words, keep the language simple.
“It took me the best part of a year to get to a point that I thought I can start animating. But before doing so I ran it past the SENCO and reached out to Prof. Tony Attwood, a leading expert on autism who was really generous with his time and knowledge. He checked the script and storyboards and made some adjustments to the language. So I felt I had a proper seal of approval, which cheered me on.
“As I moved on from writing to animation things got easier. I was in my element. I developed the characters, created the artwork, did some research for the look of the animation. The backgrounds and colours were inspired by old 1940s UPA animations, which I’ve always loved.
“For the music I asked London based musician Chris Harrington, he has always supported my animated projects with beautiful original compositions. The narrator is a Scottish actor called David Gant (Braveheart, Sherlock, Final Fantasy VII), who I’d met while working on the visual effects of feature film, The Fitzroy. He has a beautiful booming voice that is both authoritative and warm. The kind of voice that inspires trust. So I reached out and David kindly agreed to do it pro bono. Mike Avgeros also generously offered to let us use his recording studio for an hour on a weekend.
“We released Amazing Things Happen in time for autism awareness month, then something amazing really did happen. By the second day the film had been seen thousands of times. I was over the moon with that, but after two weeks it was 5 million. It was all very surreal and very moving, as I got many beautiful messages of thanks from parents, teachers and – most importantly to me – from people who themselves have autism. So it has been very rewarding, more than I had ever imagined.
“Right nowAmazing Things Happen has subtitles in 28 languages, it has been dubbed into 10 languages, apart from the French and German narrations, everything has been from contributions from people who’ve liked the project. And there are more foreign narrations coming, the former director for the Icelandic Autism Society has offered to do an Icelandic version, the Executive Director of OC Autism wants to do Vietnamese, Chinese, Korean, Tagalog and Hindu, there are offers to do Finnish, Norwegian, Portuguese, Arabic, Hebrew, Estonian, Japanese and Malay. And an animation studio in Bangladesh, who are connected with the Prime Minister’s daughter are recreating the animation with Asian themes.
“From the reaction it’s clear that there is an urgent need for this kind of material. I would also love to do more, so I am considering a crowd-funding campaign to develop a series in which children could tell their own story, describing their autism to us. Raising funds this way would mean I could work on this full time, rather than finding a spare hour here and there around my usual client work. There’s so much more to be said on the subject. And I figure that the only way to paint a portrait of something that has a million faces, is to paint as many pictures as possible!”
Additionally, Alex wrote the following to me in a separate email:
“In relation to how I visualised it, I think the fact that so many autistic people have felt it is an accurate depiction is sort of a fluke, I mean I did lots of research but I knew it wasn’t going to be accurate for everyone as the spectrum is so vast, so it felt like taking a gamble, I tried to be generic (too much detail in some parts, too little detail in others, too bright, too loud), while showing things that Neuro-Typical children can relate to, so they can put themselves in their shoes. Professor Tony Attwood came up with the idea of removing people’s faces to convey the fact that they can’t read people’s expressions, which I think is a great touch, even if it’s not obvious to people who see it, it is there.
“It helped me a lot that I am a visual person, for instance I can’t remember a phone number but I can remember the pattern my finger draws as it types. Even my mental associations are visual, when I was reading “The Reason I Jump” as part of my research at some point it evoked a scene from The Man of Steel, were Superman as a child starts discovered his powers (well I say discovered but it looked more like they ran him over, the scene is terrifying), suddenly he can hear everyone at the same time, see everything too clear, too bright, too much, that’s how I imagine sensory overload. Unfortunately autistic people don’t have superman’s ability to control this, there’s no filter or off button.”
My thanks toAlex Amelines for offering this explanation of his work.
Amazing Things Happen is something everyone should watch. I highly recommend you share this video with everyone you know!
A new program called the ‘be nice’ campaign has been started in West Michigan to help end bullying. One of the hardest issues to deal with for parents of special needs kids – as well as parents of any child – is bullying in schools and online. What do you do if your child is the victim of bullying? For that matter, what do you do if you discover your child is bullying other children?How far does bullying affect a child? What kinds of impact does this have on a child’s mental health?
Learn About Mental Health.
Did you know that problems with bullying are the leading cause of suicide in children and teenagers? Bullying can also cause issues of depression, drug abuse, and other mental health problems that can affect people for their entire lives.
In this episode we’re going to talk to an expert in the subject of bullying. Christy Buck is the executive director of the Mental Health Foundation of West Michigan, and they have a new program that offers a solution. It’s called the ‘be nice’ campaign and it’s designed to to help kids, families, schools, and communities work to understand and end bullying. We’ll also learn about mental illnesses, how to recognize when problems escalate to thoughts of suicide and what to do in these situations.
We also talk about the common myths and stigmas associated with bullying, depression, and mental health issues that can cause problems for kids as well as adults. For example, a person doesn’t need to ‘bottom out’ before they should get help. We discuss ways to overcome these myths and stigmas. You’ll also learn how the ‘be nice’ campaign can be used by your school or other organizations.
National Suicide Prevention Hotline: 1-800-273-8255.
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It’s IEP Season and we’re revisiting past episodes on the Individualized Education Plan. Find out what you can do when schools say ‘no’.
Special Parents Confidential Episode 17 When Schools Say ‘No’.
In 1990 Congress passed IDEA, or Individuals with Disabilities Education Act, which entitles each student with a disability to a free appropriate public education (FAPE) to meet his or her unique needs. Originally titled Education for All Handicapped Children Act of 1975 (EAHCA), it was based on Congress’ finding that the millions of children with disabilities had educational needs which were not being met due to a lack of services and inappropriate public school placement. IDEA set down guidelines for how schools and states were to implement special education procedures.
Unfortunately, there is a wide disparity across states as to how those guidelines should be implemented, or even interpreted. Similarly, school districts can even have differing standards for services they offer in special education. Simply put, IDEA allowed States and schools a lot of leeway in special education implementation, based on numerous issues including need, population, local economic factors, and other considerations.
The problem for parents is, this leeway in the implementation of procedures can sometimes allow States and school districts to restrict or even deny extra help for students who don’t fit the exact definition of a particular disability or learning disorder. School Districts and States are also cutting certain aspects of special education support from Education budgets as cost-saving measures. While districts and States aren’t outright eliminating Special Education, they do cut budgets for support programs, assistant teachers or para-pros who help in the classrooms, and other accommodations. The result is many parents are finding out that their children will perhaps get minimal help (the least allowed under regulations), but more often than not they hear the word ‘no’ when asking for additional help or support for their child.
So what can you do when your school or State says ‘no’?
Our guest in this episode has some answers.Suzanne Wilcoxis the co-owner ofHope Educational Consulting, LLCa special education advocacy service based in Ohio and Michigan. She is also the mother of four children, two of whom needed special education support in school. She explains how IDEA works, and how schools and states interpret those regulations. She also explains how ‘best practices’ can sometimes be overlooked due to budgeting, or availability issues.
During the time when she and her family lived in Ohio, she and her partners were instrumental in creating and passing legislation that allowed Ohio to become one of the first States in the country to recognize Dyslexia as a learning disability, and implemented official regulations on the kinds of therapies schools must offer to help students with Dyslexia. She has worked with parents, teachers, school districts, and legislators on numerous issues with special education.
Suzanne offers some great advice and information that all parents of special needs children need to know. Please feel free to share this episode with everyone you know who has a child with special needs or works with children who have special needs.
Having a special needs child always causes tremendous parenting concerns and a lot of work. Many moments can be incredible, exhilarating, and full of amazing wonder. But it can also be extremely stressful. Dealing with schools, social situations, family situations… it can seem like everywhere you turn is another opportunity for more parenting concerns and stress. The other problem is that not everyone understands or even cares about these situations, so many parents can feel isolated in their worries and concerns.
Family Stress
So what can you do to help you deal with all these stresses and keep yourself from coming apart at the seams? Our guest on this episode has some great advice.Jean Holthausis a licensed independent social worker with Pine Rest Christian Mental Health Services in Pella Iowa. She specializes in dealing with anxiety issues, parenting concerns and family issues, and working with special needs children. You’ll also find out about setting boundaries for special needs children, dealing with emotions including anger in children and adults, and how to deal with school anxiety issues. Jean also talks about great resources for parents to access that can help with numerous situations for schools, home, and social situations.
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What is the Nurtured Heart Approach and how can it help? For many kids with special needs the ability to concentrate, even to sit still in class, is challenging. We’ve given lots of names to these issues: Attention Deficit Disorder. Attention Deficit Hyperactive Disorder. Obsessive Compulsive Disorder. Oppositional Defiant Disorder, Difficult Kid, Problem Child. The list goes on… and if you think about it, it’s a very negative outlook on these children.
A Paradigm Shift.
Now there is a relatively new process of working with kids who have these issues that tries to do away with all that negativity. It’s called the Nurtured Heart Approach. It consists of a set of strategies that assists children in developing their self-regulation, and transforming the way children perceive themselves and the world around them. And it has created a huge amount of success by concentrating on positive behaviors instead of all the negative behavior.
For this episode we’re joined by Dr. William Rowell, a retired licensed Psychologist with Pine Rest Christian Mental Health Services of Grand Rapids Michigan who has spent the last years training parents, educators, foster parents, social workers, and law enforcement personnel in the Nurtured Heart Approach. He explains how the Nurtured Heart Approach works, why it’s more successful than other strategies, and how making a paradigm shift in your thinking will make all the difference for your special needs child.
Dr. Rowell’s Email: william . rowell @ pine rest . org. – be sure to remove the spaces.
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Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.
Not A Symptom of Something Else.
For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder. And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.
SPD Parent Zone.
My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.
If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.
If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have a Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!
A few months ago, while in a doctor’s office for a checkup, reading the usual magazines, my wife happened to see an article about Soledad O’Brien. She talked about her son Jackson, who was having issues in school with behavior and not understanding instructions from the teacher. Finally, Jackson was diagnosed with 80% hearing loss and is now receiving special support help in school. The interview detailed much of the work that Soledad does, not only for her own children’s education, but also her charity, The Starfish Foundation, which helps support education for middle to low income girls in school.
The article inspired us to get in contact with Soledad’s production company to ask if she would be willing to talk about some of the work she does and the issues that matter to her most about education and special education in America, and around the world. We’re pleased to say that she graciously agreed and this is episode is the resulting interview.
A Great Advocate For Education
As you listen to hear speak, it’s clear that Soledad O’Brien is not only a great advocate for education, but she stresses the importance of all parents being involved in their children’s education, whether the child is in special education or general ed. She is also passionate about the need for proper funding for public education and special education. As she says in the interview, “…the amount of money that it takes to keep people in prison could pay for them to go to Harvard.”
The Starfish Foundation– The education charity founded by Soledad O’Brien and her husband, Brad Raymond.
Matter of Fact. New in-depth interview program produced and hosted by Soledad O’Brien.
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In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.
Living With Aspberger’s Syndrome
As a child, Alix Generous was misdiagnosed with the wrong disorder and had a great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.
At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.
Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.
She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:
“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”
For many parents of special needs kids, special education rights continue to be the main cause of concern and worry. Are our kids being given the right accommodations in school? Are the schools being held accountable for special education services, and who is supposed to be checking to see if they are?
Further, with a push in this country to seriously consider doing away with public schools and instead moving into privatizing the public education system into a for-profit model, where does this leave special education and what rights will parents of special needs kids have if it happens?
What Are Your Education Rights?
Back in October of 2016, I attended a rally for Special Education that was held in Lansing, Michigan. Among the speakers at the rally was our guest for this episode, Kristen Totten. She is an education attorney with the American Civil Liberties Union of Michigan (ACLUMich). Kristen spoke at the rally about the special education rights that the ACLU is working on to help our kids. I asked her to be a guest on the podcast and she agreed.
For this episode we talked about the current state of special education rights in Michigan and across the United States, how some states, like Michigan, allow Charter Schools to reject special education students even though they are required to accept them, and what parents can do to get involved to make sure the education rights of their children are being met.
Update: A Major Victory.
One of the issues we addressed in the podcast is the work that the ACLU of Michigan has done along with Lt. Governor Brian Calley in eliminating the use of restraints and isolation on children in schools. And I’m pleased to be able to say that within 24 hours of our interview being recorded, the Michigan State Senate passed the bill that ends the use of those in all schools.
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ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.
This Episode Is Part Two.
My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.
Dr. John McCaskill, of McCaskill Family Servicesin the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.
Dyslexia, Dysgraphia, Dyscalculia and Other Learning Disorders.
In this episode, Dr. McCaskill talks about Dyslexia, Dysgraphia, Dyscalculia, and other learning disorders. He breaks down exactly what each disorder is, how it affects those who have it, and what kinds of treatments and therapies can help. He also discusses how to advocate for your special needs child with schools to make sure the school is offering not just the appropriate help, but the correct kinds of help; how families need to ensure that they are also supporting kids with special needs the right way at home; and how parents can make sure they are finding the right kinds of therapies and treatments for their kids outside of school.
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Mentoring programs for children are some of the most successful social and educational support systems available.
Many experts on child education will tell you that having someone who can mentor, coach, or demonstrate to kids how to do things outside of school and family is vital. Being able to talk to an adult mentor who can help a child with school goals and career choices can make a huge difference for a child’s confidence and outlook. Significant studies over the years have shown that kids who have been helped through mentoring programs are less likely to get into trouble in school, become more confident about their school performance, and get along better with their friends and families.
Now there’s a mentoring organization just for kids with special needs. Project Ready Set Goal, based in Grand Rapids, Michigan, offers mentoring for children with learning disabilities and physical disabilities. They help kids with academic and career guidance, building leadership skills, and help with social issue strategies and learning how to advocate for themselves. And it’s all done for free.
In this episode we talk with Janine Thomas, executive director of Project Ready Set Goal to find out more about the services and help they provide. She talks about their screening process for mentors, gives examples of how mentoring programs can help kids with school, as well as their future life choices. Janine also talks about why she wanted to focus on mentoring for special needs children, and how she hopes that her idea will grow across the country.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics of Down Syndrome, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about Down Syndrome and how it affects those who have the disorder.
Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with Down Syndrome is nowhere near as bad as some people believe.
Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan. They offer a variety of programs and services to help and inform everyone who has interest in Down Syndrome.
We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions about Down Syndrome and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
What a difference a year can make. In December of 2014, the Michigan Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. However, during the only Public Comment time the committee allowed, Michigan’s Lieutenant. Governor, Brian Calley asked the committee to suspend the meeting and take no further action, because he felt that there had not been an adequate amount of time to allow parents to have input into the rules changes.
What followed next, in 2015, was an unprecedented listening tour undertaken by the Lieutenant Governor. He traveled around the State, holding public meetings where he listened to parents of special needs children talk about their concerns. These meetings were up to two hours in length, during which the Lt. Governor said very little and allowed every parent who attended to speak.
I was privileged to attend the meeting the Lieutenant Governor held in Grand Rapids, and had a chance to ask him if he would be a guest on Special Parents Confidential to talk about his efforts. That interview took place in June and you can listen to it here – Special Parents Confidential Episode 24.
In November of 2015, Lt. Governor Calley completed his listening tour and compiled a report summarizing the key points from parents for Michigan Governor Rick Snyder, who then appointed Lt. Governor Calley to head a Special Education Reform Task Force, which would take the Lt. Governor’s report and make a recommendations strategy for the State Board of Education. That report was presented to the Board of Education in January of 2016.
We are very pleased that Lt. Governor Brian Calley has taken time from his schedule to talk to us on Special Parents Confidential about the Special Education Reforms that the Task Force has recommended, and what Michigan families can do to help. Lt. Governor Calley also talks about a new project that he and Michigan Supreme Court Justice Richard Bernstein (who I interviewed in August of 2015 – Special Parents Confidential Episode 30) are working on together, called the Hidden Talent Tour.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
LEAP, which stands for Lead Empower Assist Parents is a day-long six hour conference, scheduled for Saturday, March 12th, 2016, for parents of Special Needs Children in Kent County, Michigan. The workshop is designed for parents and providers of children with special needs to meet with area experts, educators, therapists, and other organizations who work to help children with special needs. Exhibitors, vendors and service providers will be on hand throughout the day to share resources and answer questions.
Many presenters at this year’s LEAP Conference have been guests on Special Parents Confidential and they will be talking in greater depth about their services. For my own Keynote Presentation, I’m going to talk about Special Parents Confidential, why I decided to create the podcast, and what I’ve learned in the three years that I’ve been doing these episodes. You’ll also have a chance to ask questions and I’m interested in hearing your ideas for future episodes.
Some of the breakout sessions during the day include legal planning for a child with disabilities, challenging behaviors: when typical parenting strategies aren’t working, caring for the caregiver, building communications skills through play, aided communication for early childhood, and much more. You’ll also be able to meet the presenters in the vending area. Free childcare will be provided throughout the day by the David D. Hunting YMCA.
There’s still time to register to attend the LEAP Conference. You can find out more information on the Kent ISD LEAP Conference Page, and you can register to attend the conference (cost is $15.00 per person) by Clicking on the LEAP Registration Page. If you live in the West Michigan area, I highly recommend you attend the Kent ISD LEAP Conference. Looking forward to seeing you there!
What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?
As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings.
In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.
Links To Websites Mentioned In This Podcast:
The Sibling Support Project–Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
Back in June of 2015, we interviewed Michigan Lt. Governor Brian Calley about his concerns on special education, and his efforts to provide better inclusion for parents in the education process. You can listen to that interview by clicking Special Parents Confidential Episode 24
Today we received the following email update from Lt. Governor Calley:
Good afternoon,
There is no doubt that educating a child with Special Education needs has its own unique challenges for parents and educators. It is important that we work to ensure Michigan’s system is the finest it can be to serve students and parents safely, openly and constructively. For months, I have traveled across Michigan to listen to parents and requested feedback via an online survey. I have made nine listening tour stops to date and heard from nearly 2,000 parents online.
Now it is time for the next step. On Tuesday, September 8, I will be providing testimony before the state Board of Education regarding what I have heard and learned during this process and how we can all work together to make necessary improvements. The meeting will be at 11:30 a.m., at the John A. Hannah Building, Fourth Floor, 608 West Allegan Street in Lansing. Please feel free to attend if you’re available. The Department of Education also will be livestreaming the meeting. The link will be available at www.michigan.gov/mdeon Tuesday morning.
I have appreciated the input I received from many of you in person and online. Now it’s time to harness all of our efforts and work together to improve special education in Michigan for everyone.
Sincerely,
Lt. Gov. Brian Calley
*****************
This is the final part of an extraordinary effort on the part of our Lieutenant Governor to help improve Special Education in Michigan. For the full details on why he is making this happen, take a listen to our interview in Episode 24.
Be sure to view the live-stream coverage of the meeting on Tuesday September 8th at 11:30 am. Use this link to see it live: www.michigan.gov/mde
We are excited to announce that Special Parents Confidential is now available to access for free subscription on TuneIn.
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Our guest for this episode of Special Parents Confidential is Michigan Supreme Court Justice Richard Bernstein. In November of 2014 he became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.
Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.
However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”
In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Once in a while you come across a website that is just so compelling, so useful, and so helpful that you have to share it with everyone you know.
Thirty million people have done that with The Mighty.
After finding out that his daughter had a rare genetic disorder, and his son was born with a health challenge, the founder of The Mighty, Mike Porath, decided to build a website where people could share their emotional struggles and help each other.As he says in his own article on why he started The Mighty,“Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability.”
The Mighty started out as a site where parents of special needs children can vent their frustrations, post their triumphs, and share with each other their experiences. They’ve grown beyond special needs to health challenges, and even posts written by people with special needs and health challenges who offer their own unique perspectives.
In this episode we talk to Mike Porath about The Mighty and how he brought the website together. He also talks about where he hopes to see The Mighty go in the coming years, and what he wants the site to become. It’s a fascinating story and a fascinating interview with a real visionary who just started off by asking a question: “What can we do about this?”
Below are some links to various articles on The Mighty that were mentioned in the podcast.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!
Parents of special needs children face problems that few others can understand. Extraordinary joy and crushing despair, sometimes in the same day, the same hour, the same moment. One thing is true, people who relate the best to these moments are other parents of special needs children. We have a bond that, while often unspoken, is a shared knowledge that ‘this is our life’ and we all know exactly what it’s like.
For those who are just starting out on their journey with a special needs child, the fear and uncertainty can be very daunting. How do you cope? Where do you look for help? Who can you trust? And possibly the most important question of all, who understands what this means?
To help answer those questions, Donna Kirk has returned for another interview episode. Donna was my guest in Special Parents Confidential Episode 23, in which she talked about her book, Finding Matthew, the story of her son who was born with severe brain damage. She and her husband, Ed, experienced everything a parent of a special needs child could face. A terrible life-altering diagnosis, years and years of therapies, trying to find help for their son, watching him struggle into adulthood, and finally facing the hardest loss of all, the death of their special needs child.
After we finished the interview for that episode, Donna contacted me again and asked if she could talk about the lessons she learned and how they might help parents who are currently struggling and trying to cope with the emotional rollercoaster that raising a special needs child can cause. Top of the list for any parent, honesty and communication.
For more resources on specific issues, check out our Helpful Links page.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located on this page. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. You’ll find the form to do that to the right of this posting. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
For parents of special needs children perhaps the most stressful and anxious time is when you are first told that your child has problems. That first diagnosis is such a shock. You don’t know what to do, you don’t know what to think, and you feel completely overwhelmed with it all. One of the most helpful things for parents of special needs children is when they hear stories of other families who have already gone through similar experiences and have shared their story. The challenges and struggles are universal, no matter what the disability or the severity. Just knowing that someone else is out there facing the same worries and fears, and has taken the time to tell that story, can be very reassuring.
In this episode of Special Parents Confidential I’d like to introduce you to just such a parent. In 1970, Donna Kirk, who, with her husband Ed, is from a town near Toronto, Canada, had gone to the hospital for the birth of her first son, Matthew. But problems occurred and their baby had oxygen loss during birth and suffered severe brain damage. The next day their son was transferred to Sick Kids Hospital in Toronto where the doctor there told them that their son was basically, in his words, “a vegetable with a heartbeat”. This doctor advised them to institutionalize their son and have another baby as soon as possible… implying that they should just forget Matthew.
Donna and Ed ignored what the doctor told them and took him home as soon as they could. They fought for him and cared for him throughout his entire life and, in the process, proved that first doctor and many other people wrong about Matthew’s abilities. Ed and Donna had two other children after Matthew, a brother an sister. Matthew died at the age of 40 in 2010, and Donna has written a book called, Finding Matthew, about his life, his challenges, and the struggles that she and her husband went through from his devastating diagnosis to his ultimately successful life and becoming a contributing member to society. The book shows how even the most severely disabled people have incredible gifts and how the family can work together to get through any adversity. It’s definitely a must-read for all parents of special needs children and their families.
Donna’s extraordinary book, Finding Matthewis available on Amazon Books, and you an click either of those links to take you to the page. Donna Kirkalso has a blog site where she posts resource information and updates. Just click on her name and you’ll be re-directed to her site.
As always, a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes and Stitcher as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
When I started this podcast a little over two years ago I was hoping to be able to fill a need for parents or relatives or friends of special needs children and adults. I had no idea how many people would be interested, but I thought there would be ‘some’.
Until now I really had no idea how many people have seen the Special Parents Confidential website, or how many people were listening to the podcast episodes. We don’t have a large number of subscribers on iTunes… this is primarily owing to the fact that the file size for each episode is very large. My crazy insistence on having the sound quality as good as any FM radio station is the cause. Due to these large file sizes, it’s my belief that most of the audience is listening directly on the website rather than downloading the episodes.
Well now I have a better idea of just how many people have been checking out this ‘humble little podcast’. My webmaster guru recently ran a site stat report for me, and I wanted to share some of it here. The report contains large numbers of stats including activity, access, visitors, referrers, browsers, and errors (bots trying to gain access to stuff they’re not supposed to have – don’t worry they didn’t get anything). The numbers are in, and very detailed, so I’ll just post the two most important stats: Since we started in in January of 2013 until April 23 of 2015 (the date the report was generated), Special Parents Confidential has been visited 815,493 times; with 600,882 real people hits and 214,611 spider (bot) hits. More impressively, the total bandwidth usage has been 49.45 GBs. In radio terms, that’s (TSL) Time Spent Listening. This number represents both episode downloads and direct listening time.
Pronouncing the words, “I’m shocked” is a major understatement. I think the phrase, ‘my brain did backflips’ is more appropriate. These are far bigger numbers than I ever expected, or thought possible, given that I haven’t really gone out of my way to promote the site.
To everyone who has visited, listens, and continues to do both, thank you so very much! It’s gratifying to know there are so many more of you than I thought. You have my assurances that I’ll continue to produce episodes that cover subjects you want to know about. You should also know that you have a voice in this process too. Please like our Facebook page or Follow us on Twitter so you can comment directly on each episode (we monitor those the most frequently)*. Also feel free to share episodes and the website on your favorite social media sites.
Thanks!
John
PS- if you’re interested in sponsoring or advertising on our podcast or this website, please use our Contact Page, and I’ll send you a more detailed version of the stat report and we can talk things over.
*We use Facebook and Twitter for podcast comments, rather than a webpage ‘comments section’ in order to reduce spammer advertising.
We’re working on more interviews in the next few weeks. Some of the subjects we’re covering:
Did you know Dyslexia is only recognized in 24 states as a learning disability, with specific definitions and guidelines for special education? We’re doing two episodes devoted to living with Dyslexia. We will be talking to an elementary school teacher who has Dyslexia to learn how she dealt with Dyslexia while growing up and how she now teaches. We’re also going to talk to a mother and son (the son has Dyslexia) who are working together on trying to get Dyslexia recognized as a learning disability in their state and other states.
We’re also going to talk to an RN with our local health department for medical advice and health issues that are important for special needs children and adults.
Be sure to subscribe to our social media pages, we’re on Facebook, Twitter, Google Plus, Linked In, and others where you can comment and give us suggestions for future episodes! Don’t forget you can subscribe to our email list, and find our podcast on iTunes and Stitcher.
We’re working on some big plans for this year to make Special Parents Confidential even better, so be sure to connect with us for all the news and updates as we go!
Finally, be sure to share our site with your friends and family. You never know who might be interested or have a need to know something we have here. We do these podcasts for you and your help in spreading the word is what keeps us going!
For many parents one of the challenges in raising a child with special needs is finding the right therapy for your child. Sometimes we get lucky and find the right kind of therapy right near where we live. Unfortunately for some people there’s nothing nearby that can help. Travel can be an option depending on distance, and financial ability. But for many the only option is to simply wait and hope that the therapy will someday come to them.
Then there are those who don’t wait. They decide that they will do what it takes to bring the therapy to their area to help others as well as themselves. Our guest on this episode of Special Parents Confidential is someone who is doing that right now.
Mika Vuto is the mother of a young girl with Down Syndrome. Although there are therapies available in her town of Gainesville, Florida, there was one group she had heard about,Gigi’s Playhouse, that looked like an incredible asset that could help many people… because they offer their services for free. Unfortunately the closestGigi’s Playhousewas in Atlanta, Georgia.
Finally Mika decided to open her own franchise ofGigi’s Playhouse in Gainesville. She talks to us in this episode about her journey from a mom looking for help to a community leader who wants to make a difference for her daughter and many other families with members affected with Down Syndrome. She also talks about the services Gigi’s Playhouse offer to children and parents.
TheGainesville Florida Gigi’s Playhouse is scheduled to open in 2015. You can find out more about them and learn how to make a contribution to help by visiting theirFacebook Page. You can also learn about their progress on theirblog.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
This is one of those subjects that is hardly ever talked about, and yet can have a devastating effect on families. What would you do when your child with special needs is banned from a relative’s home? How would you react? Would you try to resolve the issue? Would you try to please the relatives who won’t tolerate your child’s different behaviors? Or would you react in a different way and turn the tables? Very insightful and well-written blog from a mom ‘who’s been there’, and offers some very sound advice.
The Friendship Circle is a fantastic resource organization for not only parents of special needs children, but for anyone who has any relationship with a special needs child. They were the subject of SPC Episode 13, and we interviewed Rabbi Tzvi Schectman who told us about the mission and the purpose of the Friendship Circle.
In addition to their blog that this article comes from, they also offer many resources including a campus for social help. Find out more by visiting their website and be sure to sign up for their email newsletter to get a daily posting with excellent advice right to your email inbox.
One year ago this week I posted the first two podcasts on the newly minted Special Parents Confidential website. Fifteen episodes in one year, about three more than I thought I would be able to get produced, which puts me ahead of my expectations. And that’s always a good thing.
What does it take to create a podcast? As far as equipment goes, not much really. A mixer, a microphone, a phone interface, headphones, speakers, a digital recording platform, and some wires to connect it all.
But Special Parents Confidential is far more than the equipment. It’s a lot of people who helped me get started nearly six months before this date last year. Those people and their contributions are listed on the About Us page and I’d like to encourage you to take a look at the links to their own websites because they are some amazing people who do incredible things.
Most importantly I’d like to thank the 15 people who agreed to take time out of their busy schedules to answer questions about what parents of special needs children need to know and what they do to help. Some very graciously took a long time, nearly missing important events or meetings, just to make sure they answered every question.
When I started these interviews my goal was to create an online support group for parents of special needs children who aren’t able to attend support group meetings. Thanks to these first 15 people I can say that the goal has been exceeded
Here’s the list of those fine people and their episode subjects once again. If you haven’t heard all these interviews yet, please take a listen!
It’s been an amazing journey. I’m looking forward to continuing with more episodes in 2014 and beyond.
To everyone who agreed to be interviewed, to everyone who helped out in making this podcast and website a reality, and most of all, to you for finding my site, taking a listen, and then recommending these episodes to people you know:
Special Parents Confidential Episode 13 The Friendship Circle
One of the recurring themes we have in our podcasts is how some of the best information and support comes primarily from parents of special needs children. We know what our children need for help and it’s incredible when some parents step forward and create groups and organizations that fill those needs when other avenues are not available.
This is certainly the case with the group we are talking about in this episode.The Friendship Circlewas created by parents and family members of special needs children to help those children find friends and support. They’ve grown in just a few years from a group of a few parents who started bringing their kids together in Detroit, Michigan, to a now nearly world-wide organization. They pair up special needs kids — all children with physical, developmental, or learning disabilities are welcome no matter what the diagnosis — with ‘normal’ or ‘neuro-typical’ kids to be friends and help each other. As it turns out, all of the kids get something incredibly rewarding from the experience.The Friendship Circleoffers sports activities, tutoring, play time, and they even have a mock-village where special needs children can learn life skills like going to the bank, the store, and other social situations that happen in every day life. They also have a phenomenal anti-bullying program, which was created by the parents and the kids called theUpstander Project, that is making an amazing difference in schools across the country.
Our guest for this episode is Rabbi Tzvi Schectman, who is a family coordinator at the Friendship Circle. Most people first encounter The Friendship Circle through the daily emailed newsletter, known asThe Friendship Circle Blog, that Rabbi Schectman compiles. These emails feature articles on many different kinds of information that parents of special needs children can use.
Links mentioned in this podcast:
The Friendship Circle.orgWebsite for The Friendship Circle organization. Learn more about this amazing group.
The Friendship Circle.comFriendship Circle International – to find Friendship Circle programs and groups in locations around North America and the world.
Weinberg VillageThe mock-village facility run by the Friendship Circle.
Upstander ProjectThe anti-bullying program created by The Friendship Circle.
The Friendship Circle BlogThe newsletter from the Friendship Circle with great articles and advice for parents of special needs children. You can subscribe to have the blog sent directly to your email each day.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Religion is an important part of the lives of many people. No matter what your religious beliefs the sense of belonging and community that comes from worship can be a great source of comfort and peace. However being able to attend worship services and learning to fulfill spiritual needs can be a challenge for special needs children. From sensory issues to behavioral problems to feelings of not being accepted many special needs children simply cannot cope with the traditional concepts and behaviors that are considered normal during worship. There can also be problems in religious instruction classes or “Sunday School” (depending on what your faith offers for children) because in many of these classes the instructors are volunteers and don’t always have training in working with special needs children.
How can parents who want their special needs children to participate in their religious traditions find help to work with their clergy to make sure that their special needs children are both accepted and given the help they need to participate and grow in their spiritual needs? How should parents of special needs children approach both their clergy and the lay staff of their place of worship to bring about these goals?
Our guest for this episode has some excellent ideas and advice. The Reverend Mathew Cockrum is an ordained minister in the Unitarian Universalist tradition and was most recently a Chaplain at the University of Michigan Hospitals, and a former Associate Minister at Fountain Street Church in Grand Rapids, MI. He is also now a Transitional Minister at University Unitarian Church in Seattle, WA. He has served as a youth minister and has had a lot of experience in working with families in a wide variety of religious faiths and beliefs. Through these experiences he has some practical advice and great ideas to help families with special needs children find acceptance and fulfillment in their spiritual needs.
Links Mentioned In This Podcast:
There are many websites devoted to this subject, and far too many to narrow down just a few important ones, largely because most religions have their own ideas and methods. As the Reverend Mathew suggests, just do a Google or Bing or Yahoo (or whatever SE you use) search on the words ‘special needs children and religion’ and you’ll find a huge number of articles from all faiths and traditions on how parents and clergy attempt to rectify many of these questions. You can also add in the specific religion that you believe (such as ‘Methodist’ or ‘Catholic’ or ‘Judaism’ or ‘Hinduism’ or which ever is your tradition) to get a more focused answer.
Empaths on the Autism Spectrum – Autism and Empathy.
Please note, the original link provided in this posting is no longer active. I have found updated links, which can be found below. Sorry for the inconvenience. – John.
We’ve often heard that people with Autism lack social empathy. That people with autism have no emotional connections to others and lack the ability to have compassion.
However, new research has proven that this belief is nothing more than a myth.
The Same As Everyone Else.
The study, Divergent Roles of Autistic and Alexithymic Traits in Utilitarian Moral Judgments in Adults with Autism , was published in Nature, the Journal of Scientific Reports in March of 2016. From the Discussion section of the report, “Therefore, we maintain that the current findings hint at non-verbal intelligence as a compensatory strategy that high-functioning autistics rely on while endorsing moral choices that are in line with prevalent socio-moral norms.”
Also worth noting is the finding that people with ASD were more averse to causing harm to others, even if the decisions would produce better results.
Easier To Read Summaries.
The report itself is very clinical in it’s writing style and may be difficult to read fully. There are some excellent summaries about the findings, which I have linked below.
It is important that this information be shared on social media to counter the incorrect stereotypes that have been prevalent over the past decades. People with ASD are exactly the same emotionally as those who are considered ‘normal’.
Time goes by quickly when the kids are home instead of being in school. But we wanted to post some updates about what we have coming up in the remaining days of June and in July. We have two podcast episodes recorded and we’ll get them posted in the next couple of weeks.
The next episode, SPC number 11, which we hope to have online very soon, features an interview with the Reverend Mathew Cockrum and we delve into ways in which we can help our special needs children get the best experiences in our places of worship, as well as how to work with ‘Sunday school’ or religious class staff so that our kids can have positive experiences. We also discuss ways to reconcile that sometimes certain religious beliefs can be in conflict with medical or scientific study, and that it is possible to accept both viewpoints, and many other great ideas.
SPC episode number 12, which will be ready after that, is all about education funding. We talk with Elizabeth Welch-Lykins who is an elected official in her local school board, a member of her school district’s legislative committee, and a lawyer. She has experienced the budget crisis in our schools first-hand through having to negotiate cuts in staff and services and she talks in detail about how school districts have had so much trouble and the real reasons why so many of our school districts are in trouble. She also details how budget cuts to public schools are definitely hurting special education programs and the dangers of not paying enough attention to who we vote for in elections.
We have more great interviews planned throughout the summer and into the next school year, so please keep checking back! Better yet, sign up to get an email subscription to our podcasts so you’ll be notified every time we post something new. Just look over to the right column on our home page and enter your email address where it says “Get Podcast Notifications Via Email”. You’ll get automatic updates and we promise we will never give out your email address to anyone else.
Thanks for your support and don’t forget to help spread the word about us!
Everyone at some point in their lives experiences some form of hearing loss, either from their environment or due to advanced age. However many children are born every year with deafness or hearing impairments.
Although many therapies and technologies exist to help correct hearing impairments, the same questions and issues still come up for parents of hearing impaired children as for all parents of special needs children: communication, comprehension, help in school, social acceptance, and so on. And what organizations exist that can help parents get the information that’s best suited for their children and their particular needs?
Our guest on this episode of Special Parents Confidential, Julie Wiseman, has been through a lot of these issues. Her daughter, Kendall, was diagnosed at birth with deafness. Juli shares Kendall’s story and her own struggles with finding help, getting the right information, and many other issues that she and Kendall have faced.
Listen Up – Specializing in information for the deaf and hard of hearing, and especially geared to the needs of hearing impaired children and their families. Note: this website hasn’t been updated since 2010, but still has some valuable information.
When we talk about issues that can cause anxiety for parents of special needs kids, dealing with social situations in school and elsewhere is probably right at the top of the list. Will our children be accepted or will they be teased? Will our kids be able to handle the day to day interactions in the class room, in the cafeteria, or on the playground? What about bullying? And what are we supposed to do when our kids experience problems with these situations?
For many schools the person who can help guide our kids through their day in school is the social worker. They’re also the person who parents can talk to for help with making sure their special needs child can fit into the various social situations and can offer advice that parents can use to reinforce the school’s expectations at home.
Our guest on this episode of Special Parents Confidential is Chris Kenward, an elementary school social worker who has many years of experience dealing with both special needs students and general education students. Many experts agree, the vast majority of social problems begin early in elementary school so the sooner a child with special needs can get help in dealing with social issues, the better their progress will be throughout their life. The information Chris shares here is going to be vital for every parent of a special needs child, as well as for teachers, special education experts, care givers, and anyone who has a relationship with a special needs kid.
We have some great guests scheduled for interviews in the next couple of weeks! Among them an elementary school social worker who will talk about acceptance, dealing with peers, preventing bullying, and helping our special needs children navigate the social structures of school.
We’re also going to talk with a Professor of Special Education – the teacher who teaches the teachers. We’ll discuss the ins and outs of special education from the perspective of the teachers and how parents can work effectively with their child’s teachers to make sure our kids are getting the best help available.
May is Better Hearing Month so we’re also going to talk with the mother of a deaf child who has cochlear implants, and is a board member of the Hearing Loss Association of America (Grand Rapids chapter). She’ll talk about the cochlear implant process, the modes of hearing, advocating for hearing loss children in school, support programs available for parents with hearing impaired children, and how to help parents find the right choices for treating hearing loss.
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