Special Parents Confidential 71 Patrick Parkes Part 1.
Patrick Parkes shares his life story. All parents worry about their kids and how their futures will turn out. But for parents of special needs kids, those worries can be much more immediate. It’s not just ‘will my kid make it through school’ – but will my kid make it through this grade? Will my child make it through the next grade? What about high school? What will life be like after high school? Can we even think about college or tech school or even some kind of career?
What It’s Really Like.
That’s why I think one of the best things for parents is to be able to hear from adults with special needs who have gone through the challenges and have been able to make a successful life for themselves. Knowing that others have made it can be very reassuring. Over the next few episodes of Special Parents Confidential, we’re going to do just that. My guest is Patrick Parkes, who I met earlier this year.
Introducing Patrick Parkes
Patrick was born with cerebral palsy and has had numerous challenges throughout his life. He made it through school and into college and he is now a substitute middle school teacher in West Michigan and he’s also a Para-Olympian in the sport of Boccia. Patrick’s story and his unique perspective as someone who had special needs in school and who is now a school teacher is quite informative and I think everyone who hears it is going to learn something interesting.
We call Special Parents Confidential the resource podcast for parents of special needs kids. And parents are the ones who can help us continue. If you’ve found any episodes of SPC in any way valuable to you, please help spread the word about us. Share our website and your favorite episodes on your favorite social media platforms. We have some handy easy link buttons on the page for every episode. Or just copy and paste the link to our site to your status updates.
AmeriDisability is an online publication dedicated to individuals with disabilities, caregivers and seniors.
From The AmeriDisability Website:
Who We Are:
AmeriDisability… “serve and collaborate with businesses and nonprofit organizations that provide relevant products and/or services. Our resource aims to inform, inspire and empower the disability and senior communities and beyond!”
“Our Mission:
We believe that by working together we can: – Improve community awareness and foster inclusion. – Promote quality services/products to enhance the lifestyle needs/wants of our readers. – Bring attention to public issues through meaningful dialogue and the promotion of public involvement. – Influence local, state and national decision makers for positive change. – Create opportunities for networking and collaboration.”
From The AmeriDisability Article Itself:
Reporter, Lisa Beach, writes:
“If you’re a podcast junkie like me, you probably spend time searching out programs that entertain, inform and inspire. Whether you’re in the car running errands or curled up on the couch with a cup of tea, these five disability-focused podcasts are worth a listen.”
Dubbed “the resource podcast for parents of special needs children,” Special Parents Confidential launched in 2013, on a part-time basis, with John Pellegrini as the show host. The show targets parents of special needs kids—any special needs, as Pellegrini doesn’t focus on just one particular issue. Adopting a “we’re-all-in-this-together” approach, the show also appeals to family members, relatives, caregivers and anyone with any kind of connection to a person with special needs.
“I came about this because of our son, who has some special needs,” explains Pellegrini. “We couldn’t get a diagnosis that explained all his issues for the first few years, so we attended a number of different support group meetings in an effort to learn more. I realized that, for many parents, attending a support group meeting is nearly impossible.” With his 30-year background in radio and audio production, Pellegrini decided to do a podcast that would serve as a virtual support group meeting that parents could access any time they want. “My role is to be the support group’s facilitator,” he says. “I get in touch with experts on different subjects and ask the kinds of questions that I, as a parent, would want to know.”
With 70 episodes recorded already, the podcast aims to fill the airwaves with expert advice on a variety of issues that parents of kids with special needs face. The show covers common parenting concerns such as getting and coping with a diagnosis, assistive technology, medical issues, insurance, education and more. (He cites Episode 15: Applied Behavior Analysis (ABA) as the single most downloaded episode so far.) In particular, Pellegrini enjoys interviewing adults who have special needs and hearing them tell stories of what their lives were like growing up with their challenges. “The contrast of how we used to deal with special needs and special education in the past compared and how things are done today shows great improvements, but sometimes we’ve also taken some ridiculous steps backward,” he points out.
With the backdrop of his career in the mainstream media, Pellegrini says, “I think podcasting is a major shot of life and inspiration. The ‘mainstream media’ has become too corporatized and homogenized to the point where you hear nothing but the same thing over and over. Podcasting—when done well (and unfortunately some of it isn’t)—offers a greater variety of subjects that people should know about.”
One overarching theme that others should know about lies in the power of kids with special needs. “What I hear more often in different ways from everyone I’ve talked to is, ‘Never underestimate a child with a special need,’” Pellegrini points out. “Always assume competency, because, when given the right kinds of assistance, they are far more capable than you could imagine.”
Thanks For Supporting Special Parents Confidential!
Our thanks to AmeriDisability and Lisa Beach for finding us and giving our podcast a mention! We try to keep SPC on top of the special needs community awareness, but since we are commercial free, we don’t have a budget for promotion. We only exist thanks to word-of-mouth and social media sharing. Please help out and share Special Parents Confidential on all your favorite social media platforms. We have some easy to use sharing buttons available at the bottom of everything we post here.
We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. In order to understand what it’s like to have Autism, you should hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. It is not a disability. Browsing Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 2. Daniel Share-Strom
For SPC Episode 69, we talked to Maxine Share, who started Autism Goggles as an outgrowth of her advocacy work that began with her son.
In Part 2 of our interview, we talk to Maxine Share’s son, Daniel Share-Strom. His own struggles with Autism and Aspberger’s Syndrome were the basis of Maxine’s advocacy for parents. From his bio on the Website: “Daniel is a writer, motivational speaker, workshop facilitator, and co-founder of Autism Goggles, a social initiative determined to ‘reframe understanding of autism’ to focus on ability and strengths.
“Diagnosed with autism at a young age, Daniel has been moving audiences with his self-awareness, poignant insight, and humour for nearly 15 years. He does this with full-day workshops and speeches which help parent groups, universities, autism organizations, workplaces, and health care professionals to understand the many features and traits of autism using plain language and practical examples. Daniel is committed to equality, fairness, and social justice for all people as he works to shift society toward acceptance and understanding of neurodiversity. He speaks up and speaks out for those who have not yet found their voice.”
We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. And the best way to understand what it’s like to have Autism, is to hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. Autism is not a disability. Through Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 1 – Maxine Share
We’ve divided this interview into to separate episodes. In Part 1, you’ll hear from Maxine Share, as she tells her story of how she became a special education advocate in her home of York, Ontario, Canada and the work she does with Autism Goggles. Part 2 will feature our interview with her son, Daniel Share-Strom.
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.
Some people go into disability advocacy and disability law because they feel compelled to help serve in a community that has many areas that need representation.
Then there’s Kelley Simoneaux, who’s known as The Pushy Lawyer. Kelley suffered a spinal injury in a car accident at age 16. The accident left her a paraplegic and confined to a wheelchair. But she decided to dedicate her life since then to becoming a lawyer, specializing in product safety law, and spinal injury law. She has also been quite an advocate for disability rights and accessibility laws, due to her own experiences in law school and in her career as a lawyer.
From Injury To Advocacy.
Using her nickname, The Pushy Lawyer (inspired by her use of a wheelchair), Kelley has made a difference, and not just in the areas of law that she specializes in. She’s even made a difference in the way courtrooms are run, and designed. As she says at the very beginning of her career, a judge couldn’t understand why she did not rise when he entered the courtroom as all the other people had done. Just by being in court, she’s been able to raise awareness of those with disabilities and special needs virtually every day.
Where’s The Access?
When Kelley was starting out in her legal career, many courtrooms and government buildings didn’t have adequate access. This caused problems for persons in wheelchairs, or on crutches, or even using walkers. Through her work, and primarily without having to file legal action, the court system in several states began to rethink and redo their designs to allow for greater accessibility. Not just for lawyers, either, but also for plaintiffs and defendants, and even jurors and the public. Being the Pushy Lawyer has helped her inspire improvements, and, as you’ll learn, more still needs to be done.
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.
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.
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.
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.
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.
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.
We are pleased to announce that you can now listen to Special Parents Confidential on Spotify.
Follow any of the links in this text to find outSpotify listing and subscribe to SPC.
Or, use the Spotify button on our new social media listings on the right side of the main page of our website.
We’re now able to add Spotify to our list of other social media subscriptions including iTunes, Google Play, Stitcher, TuneIn, PodDirectory, BluBrry, Tumbler, LinkedIn, Twitter, and Facebook.
We’re working on getting SPC listed on more audio services, and we’ll continue to update our availability as we go.
Thanks for all your continued support! Be sure to share SPC with all of your favorite social media sites. Just use the social media buttons at the bottom of this posting, as well as on the right side of our home page.
New Episodes Coming Soon!
We’re working on some new episodes of SPC that will be posted soon.
Additionally, we’re planning to start a series of episodes on the Americans with Disabilities Act. We’ll take a close look at how and why the Act was written and passed in 1990, and the ADA Amendment Act of 2008. We’ll go through each part of the Act and talk about what it covers, how the laws work, and we’ll try to dispel some of the common misconceptions about ADA and how it affects businesses, education, and public life.
We think this will be a great series, and hope you’ll find it worthwhile.
Make sure you subscribe to us on Spotify, or any other audio service site we’re listed on, so that you won’t miss a single episode! And be sure to write reviews for our episodes on those subscription service sites as well, to help spread the word about SPC.
We’re introducing you to Lori and Dave Hastings, and their organization,Lori’s Voice. As any parent of a special needs child can tell you, money is one of the biggest challenges. It seems that everything involving your child requires large amounts of money. Medical treatments, therapies, additional equipment, travel expenses, the list can seem endless. The real problem is medical insurance doesn’t always pay for much of these expenses.
Financial Help In Difficult Times.
Lori’s Voice is a new kind of organization whose sole purpose is to provide funding for those expenses. They get donations and sponsor fundraisers to raise money so that they can help families pay for whatever they need. From their website: “The Purpose of Lori’s Voice is to Provide Equipment, Educational Services, and Medical Assistance to Children With Neuromuscular, Degenerative Diseases, and Mobility Issues.”
They’ve Never Done Anything Like It Before.
Lori and Dave Hastings never ran any kind of a foundation or charity organization before. Yet, they didn’t let that keep them from trying. By founding Lori’s Voice, they’ve been able to help dozens of families. Lori talks about her very personal motivation for getting involved in this work, and how others can start similar organizations. You’ll also learn how you can donate and help. Although Lori’s Voice is located in, and focuses primarily on West Michigan, others can make it happen anywhere.
A great way to connect with us is through our Facebook page. Use the social media button for Facebook on our website to find us. You can comment on episodes you’ve listened to, and suggest topics for upcoming interviews. Please be sure to help spread the word about Special Parents Confidential by sharing our page in your status.
Women.com is a site dedicated to supporting women through all walks of life. They receive more than 15 million unique monthly visitors. Founded by Susan Johnson, formerly of Facebook, Photobucket, and Expedia. From their “About Us” page:
“Our hearts and minds are won over by places that know how to make us feel good. A boutique that always carries your favorite soft tees. A coffee shop whose baristas always remember how you like your lattes. A television show with characters that always make you laugh out loud. We aim to support and promote women who are creating wonderful and beautiful things. We hope to offer a trusted destination that will give you a moment’s rest and a bit of laughter in our constantly on-the-go, work-driven world. Our dream is that every time you want to smile and add a little bit of delight to your day, you come to women.com. And when that smile carries over into the rest of your life and world, you share how good you feel with everyone around you. Pass it on”.
Resource Recognition.
Our podcast was chosen as one of the five best resources for parents of kids with Autism. Although, as you know and as they point out, Special Parents Confidential has resources for all parents of special needs kids.
Thanks to Women.com for the feature, and thank you to all of our listeners for helping to spread the word about us! Special Parents Confidential will continue to provide the best information possible to help all parents of special needs kids.
“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.
Every so often you run across an idea that is so perfect, you find yourself wondering why it hadn’t been done before. Such is the case with The Children’s Healing Center, a new play facility in Grand Rapids, MI.
All Kids Want To Play
We all know the importance that play time and activities has for social development. We can talk about statistics and studies on the subject, but as parents we just know kids like to play with each other. But when a child has a disease or a disorder that compromises their immune systems, social activities usually wind up being left out.
Safe Play Areas For Kids With Immune Deficiencies
Now a new concept has come about here in Grand Rapids, Michigan where I live that is making a major difference. The Children’s Healing Center is a special play and social activity center that is completely germ free. It allows kids with cancers, blood diseases, or any other disorders that cause immune deficiencies to still get out and have a chance to play and socialize with other kids who have similar problems.
They offer fun programs and activities in technology, art and learning, fitness, and exploratory play in a seven thousand square foot facility that is as germ free as possible.
Joining me on this episode of Special Parents Confidential is Amanda Winn, who is the Founder and the Executive Chair of the Children’s Healing Center. We talk about her background and her very personal reason for starting the Children’s Healing Center, as well as what the center offers for kids and families.
Connect With Special Parents Confidential!
Did you know the best way you can keep in touch with me and comment about episodes and other issues you’re interested in is on the Special Parents Confidential Facebook page? Use the Facebook button below this post to connect with us and share Special Parents Confidential with everyone you know on social media.
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.
We’re pleased to announce that Special Parents Confidential can now be accessed and heard on Player FM.
From a review of Player FM on LifeHacker (the review is from 2013):
“Player FM is focused almost entirely on podcast discovery, and helping you find new podcasts to subscribe to based on your interests and the topics you already like. When we say topic, we don’t mean “technology” or “music,” we mean specifics.” You can search subject matter such as new movie titles or games.
“Like any good podcast app, Player FM saves your subscriptions in the cloud so you can get them on other devices, gives you the option to stream podcasts from the web or download them and listen to them locally, lets you choose whether to download at any time or only over Wi-Fi and features show notes and links for each episode. It also features a homescreen and lock screen widget.”
Here’s the link to find Special Parents Confidential on Player FM:
We’re going to continue to make Special Parents Confidential accessible across every platform available. Player FM is another great addition to that list. Please be sure to subscribe to our podcast on your favorite pod-aggregator services, and please feel free to write a review!
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In this episode we’re taking a look at Collaborative & Proactive Solutions, which was developed by Dr. Ross Greene and his Foundation, Lives In The Balance. Child behavior problems are always a concern for parents, and sometimes it can seem for parents of special needs kids that the behavior concern is a constant problem.
Punishments and Discipline Don’t Work.
For as long as anyone can remember, the basic correction method for misbehavior was centered on punishment and discipline. However, that model often fails miserably, and we know this is true, because it’s evidenced by the fact that we have so many prisons full of the results of that failure. So why do we keep enforcing a system that doesn’t work?
Treating Causes Instead of Symptoms.
Over the past few decades a new model of behavior, called Collaborative and Proactive Solutions, or CPS, has been developed with a much greater rate of success. This model was founded by Dr. Ross Greene, who, while on the faculty of Harvard Medical School, began to take a different look at kids with behavior problems.
Collaborative & Proactive Solutions.
From his organization’s website, Lives In The Balance: The model is based on the premise that challenging behavior occurs when the expectations being placed on a kid exceed the kid’s capacity to respond adaptively, and that some kids are lacking the skills to handle certain demands and expectations. So the emphasis of the model isn’t on kids’ challenging behavior, which is just the manner in which they are expressing the fact that there are expectations they’re having difficulty meeting. Nor does the model focus on psychiatric diagnoses, which are simply categories of challenging behaviors. Rather, the model focuses on identifying the skills the kid is lacking and the expectations he or she is having difficulty meeting.
To tell us more about how the Collaborative and Proactive Solutions model works and why it works, we’re being joined by Kim Hopkins who is the Director of Outreach for the official Collaborative and Proactive Solutions Foundation, Lives In The Balance.
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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!
In recent months there’s been a resurgence of concerns about vaccine safety. Claims about this year’s flu shot being ‘not as effective’, has given the anti-vax movement new attention. But, as we noted in 2015 when we posted this episode, those claims are nonsense. So here’s a revisit of SPC episode 22, in which we interview a real expert on vaccine safety.
What Is The Truth?
In the last 20 years or so we have seen an increase in popularity of an anti-vaccine movement which is based on some very disturbing claims about vaccine safety. Primarily among them being that the MMR vaccine, which stands for Measles, Mumps, and Rubella, causes autism. Others claim all manner of health problems can come from vaccinations and that we, as a society, should stop vaccinating our children in any way.
But are those claims valid? Do they have any real scientific proof? For that matter, how safe are vaccines and immunizations? Who makes them? How are they tested? What kind of research, safeguards, and oversight is done before a vaccine is allowed to be used in public? Are they just thrown together in careless disregard by big pharma corporations for big profits, as the anti-vaccine movement claims, or is there a much more scientific and careful approach with regulations and oversight from medical groups, the CDC, and the FDA?
Hear From A Real Expert.
Our guest on this episode of Special Parents Confidential is going to answer a lot of those questions. Mary Wisinski, RN BSN, is the Supervisor of the Immunization Program at the Kent County Health Department, located in Grand Rapids, Michigan, and she has graciously agreed to this interview to provide credible and accurate information. And what she has to say is very important for every parent to hear and understand.
More importantly, Mary answers the one question that the anti-vaccine people have never dared to address: Are there documented cases of children who were not vaccinated, yet still developed autism? Listen to this episode to hear the answer for yourself.
Valid Links.
Mary has also supplied a PDF with links to websites that contain accurate, proven, peer-reviewed research that prove the safety and importance of vaccines and immunizations. There is also links to books you can purchase for more information, a toll free number to the Center for Disease Control where you can speak to CDC staff on vaccine safety 24/7, as well as a DVD on vaccine safety. The website links are listed below and the PDF form link is below them:
Vaccinate Your Baby– contains a broad array of educational materials and information about vaccines, their safety, vaccine research and science, vaccine misperceptions, and many other topics for clinicians and parents.
Every Child By Two another site with great information for parents and clinicians.
Center for Disease Control offers a toll-free number for consumers and healthcare professionals who have questions about immunization and vaccine-preventable diseases. Call (800) CDC-INFO or (800) 232-4636. The Center operates 24/7 in English & Spanish. TTY: (888) 232-6348.
Please note, on the PDF form there is a link to a site called the National Network for Immunization Information. That domain has expired and the links are no longer active.
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 there. 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!
The 2017-2018 Cold and Flu season is well underway. News headlines from all over claim this year’s flu is the worst yet. For any parent, child illnesses can be very traumatic. Dealing with sick kids while trying to juggle your career schedule can be a nightmare in and of itself.
The Doctor’s Advice
Last year we posted three different episode interviews with our friend Dr. Patricia Schultz, an emergency medicine trained physician. After finishing residency and practicing in the ER for a few years, she found her real passion was utilizing her medical training to help patients and families get the best medical care possible. She also taught medical students how to perform to the best of their abilities while having the utmost empathy, respect and compassion for their patients. Dr. Schultz is currently a healthcare consultant in the private sector, and is working on writing her second book. She is also personal friend of our family.
It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
In this episode of Special Parents Confidential, Dr. Patricia Schultz provides some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Have you ever checked your child’s medications to see if you’re giving them the right medicine? Of course you have. Have you ever checked your own ability to measure out the correct dose of medicine? Are you certain your measuring ability and the tools you’re using to measure the medications are accurate? Child Medication Errors are much more common than you think.
This is a concern that’s not just for parents of special needs kids, but for all parents. The simple fact of the matter is if you are the parent of a child who has ever been prescribed a medication or has taken over the counter medications for any reason, and if you have used any kind of liquid medication, you have probably made some dosing errors whether you realize it or not.
Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment.
In October of 2016 a study was published by the American Academy of Pediatrics that showed that greater than 84 percent of parents who participated in the study made some kind of error when measuring a liquid dose of medicine, with 68 percent of those errors being an overdose, and twenty percent of the errors being double the amount of medication that was prescribed.
Preventing Child Medication Errors: How Accurate Are Your Measuring Tools?
The study looked at several medicine measuring tools including the small plastic measuring cups that are commonly included with over-the-counter medications, liquid measuring syringes (not the kind used in vaccinations), kitchen measuring spoons, and tableware. The degree in variations of accuracy between all these measuring tools was astonishing and alarming.
In this episode, Dr Schultz talks about the results of the study, some of the most common mistakes parents make when using measuring tools, and the dangers of incorrect dosages of medications for kids. She discusses which of the measuring tools tested was the most accurate, how to check with your doctor and your pharmacist to make sure you’re measuring accurately, and whether or not homeopathic medicines are really safer than pharmaceutical medications.
Finally, we have this episode where we discuss trips to the ER, which can happen often, if you’re a parent of a special needs child. Dr. Schultz talks about how parents can lessen children’s fears of the ER and the doctor’s office in general. What parents can do to help doctors and staff members understand the unique challenges our kids face. How parents can best advocate for their kids. How to make sure that in an over-worked environment like a busy ER, that the staff is really focusing on our children.
Dr. Schultz also discusses what parents should do when conflicts arise with the medical staff, which unfortunately can happen. The dangers of trying to diagnose our kid’s medical problems through internet searches. Finally, why it’s important to follow up an ER visit with an appointment to your family doctor or pediatrician.
Disclaimer:
Dr. Schultz’ contributions in all of these episodes are for informational purposes only. Always talk your family physician or pediatrician before considering any kind of medical treatment, therapy, or medication.
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.
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Some times you come across an idea that’s so clever, you wonder why no one thought of it before. Access Now is just such an idea. Maayan Ziv, a young woman who has Muscular Dystrophy, created this app to help people with disabilities pin-point accessibility in public buildings around the world. Such a simple idea that can help a lot of people.
Crowdsourcing Accessibility Information.
Anyone can download Access Now for free and help contribute to the map. Using MapMe technology, you can pin any location around the world as either accessible, partially accessible, patio access only, or not accessible. Also, if a building is not accessible, the App helps you tweet this information to start the process to make a change to the accessibility of that location. Check out the currently pinned locations on the Access Now Map.
If You Can’t Enter…
People sometimes forget that getting into a building or business or even a home can be a real challenge for a person with a disability. Wheelchairs, crutches, walkers, even people who use canes can have difficulties with accessibility, and sometimes building management or owners, are completely oblivious to the issues. This new App allows anyone a chance to do something about the issue, for free.
34 Countries And Growing
As of this posting, Access Now has pin-pointed over 22,000 locations in 34 Countries – and they’re just getting started. Being able to know ahead of time how easy or hard it will be for someone to gain access to a public building is extremely important. Access Now is the app that can help make the kind of change in accessibility that’s been needed for a long time. If you or someone you know needs this information, we encourage you to check it out and share it with everyone you know on social media.
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.
Death and grief are subjects that are often overlooked at the holidays. Celebrations can be difficult for families who have recently experienced a loss. Adults and children experience grief in different ways, especially children with special needs. The important thing to remember is there is no time-frame for ‘getting over it’ or even the so-called ‘sense of closure’ (which often never happens). With that in mind, we invite you to listen again to episode 32 from January of 2016, to get some great advice on coping with grief.
Death is one of those subjects that few people want to talk about, yet everyone will experience. For children, death, and the grief that comes with it, can be very hard to talk about. Many kids, even teens, don’t have the abilities or the tools to adequately express their emotions. And when a child has special needs that can make expressing emotions, or even basic communication challenging, the lasting effects of dealing with death and grief can be devastating.
Children Experience Grief Differently.
As parents, it’s sometimes easy to forget that our kids are upset when we face the loss of a parent, grandparent, sibling, or family friend. We see them playing together at funerals and think to ourselves that they’re okay. Sometimes it’s not till days or weeks later that the emotional problems begin to show themselves. Death and grief are difficult to understand for children, no matter what the age.
Support Groups Can Help.
Fortunately there are groups and organizations that exist for the sole purpose of helping children deal with death and grief. One such group is Ele’s Place, in Michigan. Our guest on this episode of Special Parents Confidential is Kelly Ahti, one of the program directors for Ele’s Place in Grand Rapids. She talks about the challenges of how grief can affect children of all ages from toddlers to teenagers. Kelly also has ideas of what parents and relatives can do to help kids deal with their emotions and get through the difficulties and sadness that occurs.
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!
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
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Last spring we talked to the Center for Disease Control and Prevention about their Learn The Signs, Act Early, program to help parents better understand if their child has Autism.
Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.
Learn The Signs. Act Early. From The CDC.
To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early. From the website:
“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”
In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.
Amazing Me – It’s Busy Being 3!Parents, this book for children ages 2-4 will show you what to look for as your child grows and develops. Whether you read this story to your child online or have a hard copy of the book, ask your child to find the koala bears. Each page with a koala bear also has a star and milestone at the bottom just for you. See if your 3-year-old is able to do some of the same things as Joey.
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, Tumblr, 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 services. 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!
It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Always Call Your Doctor First.
You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults. As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.
If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!
In January of 2014 we posted episode 15 of Special Parents Confidential, in which we learned about Applied Behavior Analysis ABA. Our guest was Conny Raaymakers, who is a board certified behavior analyst. Her interview has become our most downloaded and listened to episode, with nearly double the listens of any other episode we’ve done. It’s even been cited in a text book on applied behavior analysis.
What Is ABA?
Applied Behavior Analysis or ABA is a term parents of special needs children hear a lot in schools, doctors offices, therapy centers, and just about anywhere our kids interact with people. Studies have shown that ABA can be used to help children as early as 18 months learn to cope with everything from social settings to the educational environment. ABA has been proven to be successful especially for children with autism and can be used to help kids with other disabilities and disorders.
New Contact Information.
However, since that interview took place, Conny has had some changes in her career. She is now the Director of ABA services at Developmental Enhancement Behavioral Health. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist. She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.
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Every year it seems the news is full of stories with politicians calling either for cuts in education funding, or increases in education funding.
This year, however, cuts were attempted in special education funding. Thankfully, the Congress was able to work out a bill that increased funding for special education. Never the less, many are worried that this is just the beginning, and that more attempts like this will be coming.
A Possible Solution.
Back in 2015, the Kalamazoo Regional Educational Service Agency (KRESA), which oversees nine school districts and four public service academies in Kalamazoo County, Michigan, put together a ballot initiative to raise taxes specifically to fund their regional special education programs for the next six years. Despite widespread sentiment among most people against raising taxes, the ballot initiativepassed successfully.
John spoke to KRESA Superintendent Dave Campbell to talk about the initiative and how their combined districts were able to get the funding passed. Proving that taxes to fund education can be raised when parents, educators, administrators, taxpayers and voters work together to make sure the message is heard.
Why Listen Again?
The process of getting this ballot passed took a few years. However, the need is dire enough that understanding how to get an initiative like this passed is very important. If your school district is having budget problems, the KRESA Special Education Funding Initiative might be a great blueprint on how to protect your school’s special education funding.
Please note: the link to the news article on M-Live about the successful election may be expired, depending on when you see this post. Typically they are good for about two years after the posted date, which was two months before this episode was posted.
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The new Eduction Secretary of the United States has caused some controversy in the past months since her appointment over her views on special education, and her financial ties to a company called Neurocore. Specifically, she seems to have no interest in special education at all. Indeed, one of the first actions that took place after her appointment was the removal of all special education information from the Department of Education website. That information has since been restored, but it is still troubling. It should also be noted that this is the first time ever that an entire section of the United States Education Department’s website was deleted and only restored after public outcry. While it was claimed that there had been a simple mistake during the transition from one administration to another, many were quick to point out that this had never happened before in the entire history of the department during either administrative transitions, or otherwise.
Education and Special Education?
Further troubling is that Betsy DeVos’ only answer to any questions about the future of education in America, including special education, is to state her belief that, “parents have the right to choose what school they want their kids to attend”, and that, “states have the right to decide what that education will be”. Seemingly, without any federal government oversight. If that is truly the case, where does that leave special education, and the oversight of IDEA – the Individuals with Disabilities Education Act, that was implemented by Congress in 1991 and has been administered by the Education Department in since then?
What Is Neurocore?
During her confirmation hearings it was revealed that Mrs. DeVos and her family are the majority owners of Neurocore – a brain training program that has been hyped as a way for people with learning challenges to succeed. (They are also majority shareholders in several for-profit Charter School corporations, which we addressed in SPC Episode 43with Kristen Totten of the Michigan ACLU.)
Our Guest: Ulrich Boser
Back in May of this year an article appeared in the Washington Post, written by our guest for this episode, Ulrich Boser. He investigated Neurocore, went to one of the Neurocore Centers to have an exam done, and checked out their findings with medical doctors and education experts. He talks about the concerns about Neurocore’s claims of success, and the problems caused by Mrs. DeVos’ financial ties to the company.
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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Clubfoot, or talipes equinovarus, is a treatable birth defect that affects approximately 150,000-200,000 children each year. When clubfoot occurs the foot is twisted inward and down. For decades the standard treatment for clubfoot consisted of performing radical surgery on the tendons and bones of an infant’s feet.
In the mid 1940s, Dr. Ignacio Ponseti, an orthopedic surgeon at the University of Iowa, began reviewing the results of the surgical treatments of clubfoot that were commonly used at the time. His findings were not encouraging. He discovered that, in adulthood, former surgical patients often experienced foot stiffness, pain, arthritis, and limited mobility, and in many cases required additional surgery.
The Ponseti Method.
By studying the anatomy and functions of a baby’s foot, Dr. Ponseti developed a non-surgical method to correct clubfoot in infants through gentle manipulation of the feet followed by the application of plaster casts. In 1948, Dr. Ponseti began using what has now become known as the Ponseti Method of clubfoot treatment.
Our guest for this episode has a great deal of experience with the Ponseti Method of clubfoot treatment. Dr. Jose Morcuende is a professor of orthopedic surgeries at the Ponseti Clubfoot Clinic at the University of Iowa Children’s Hospitals.
Dr. Morcuende trained directly with Dr. Ponseti and has helped to promote the Ponseti Method around the world through the Ponseti International Association, of which he is the President at CEO. He talks about working with Dr. Ponseti, how clubfoot affects children born with it, and the success rate of the Ponseti Method. Dr. Morcuende also talks about the mission of the Ponseti International Association, and the importance of finding a doctor who has been fully trained in the Ponseti Method.
Find out how the Michigan Alliance For Families, and other similar organizations around the United States can help you negotiate special education services for free.
What Is The Michigan Alliance For Families?
Trying to get help with the special education process can be very difficult, and potentially expensive. There are dozens of advocacy service businesses and legal firms that specialize in handling IEPS for families. There are hundreds of books you can buy. Seminars you can attend. Personal counseling services. The list goes on.
But did you know that some of the best help for negotiating special education services is available for free from your own State government? Every State in America has what’s known as Parent Information and Training Centers that offer help in everything from early intervention, to writing an IEP, to legal support, transitioning issues, and beyond.
Free Is A Nice Price.
Here in Michigan, the Parent Center is called the Michigan Alliance For Families. They offer parent-mentors… these are parents of special needs children… who have been trained to coach other parents to work with schools and get the help that their children need.
Our guest for this episode is Kelly Orginski, who is the executive director of the Michigan Alliance For Families. She explains how the Michigan Alliance came together, how the parent-mentors are trained and work with families, and how they can help. She also talks about what parents can do to help themselves with the negotiations, and where to find help from similar organizations in other States.
Find Your Parent Center– Directory from the Parent Information and Resources website that links to all State Parent Information Centers.
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Early Intervention – Revisiting Special Parents Confidential Episode 25.
It’s IEP Season and we’re looking back on older episodes that deal with Individualized Education Plans. Early Intervention is one of the first terms that parents hear when they are trying to find help for their children. We talk to an early intervention coordinator to learn about the process.
Early Intervention.
There’s probably nothing more nerve-wracking and stressful for any parent than the realization that your new baby, your toddler, your child might have some problems. Whether it’s not speaking, not walking, or not engaging socially like other kids, the hardest question many parents face is, what do I do about this?
Of course friends and relatives will tell you, oh it’s alright, that’s just how some boys or some girls are… and they’ll grow out of it. But that’s not always the best advice, and if your child does have a developmental delay or a learning disorder, they are simply not going to grow out of it. They need help. And then the question becomes, where do I get that help?
Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Barbara Corbin is the Early On Coordinator with the Kent Intermediate School District in Kent County, Michigan. She handles Early Intervention, and Early Childhood Special Education with school districts. She helps parents get their first diagnosis and coordinates getting help for children right at the very beginning. Thanks to advances in medical research and therapies, children can be diagnosed very early, and Early On programs can start at age two.
Links to websites mentioned in the podcast:
1800EarlyOnEarly Intervention information for Michigan, with links to other States. The website name is also their toll free phone number: 1 800 Early On.
The Arc of Kent County Information resource for people with intellectual and developmental delays.
Michigan Alliance for Families.Provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services.
Revisiting Special Parents Confidential Episode 06 Special Education Advocacy.
It’s IEP Season and we’re revisiting older episodes that offered information to help with the IEP process. Today we’re Revisiting Special Parents Confidential 06 Special Education Advocacy. Learn about the role of the Special Education Advocate and how they help parents negotiate the Individualized Education Plan, as well as the 504 Special Education Plan, and what the difference is between these two options.
Special Education Advocacy.
As parents of special needs children we hope that our kids will have every opportunity to get a good education, and get assistance when they need it in school. Special Education has changed over the past couple of decades. Special needs children are spending more time in mainstream classrooms and spending only limited time out of the class with their special education teachers for whatever assistance they need.
But what exactly is Special Education? We know that our kids are supposed to get help. Where can we get good advice or assistance when facing the task of getting the educational help for our special needs children? Do we have to see a lawyer? Can we just expect the school to handle it properly? What are the standards? What’s an “IEP” (Individual Education Program), what’s a “504”, and what kind of educational help can we even reasonably expect our children to have in the first place?
Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Kathy Holkeboer is a Special Education Advocate in West Michigan. Advocates for Special Education work with families on understanding what kinds of educational assistance their special needs children are entitled to have, based on need. They can even go with the parents to meet with school officials to put the special education plan in place for each school year.
Links To Websites Mentioned In This Podcast
Pacer CenterThe National Parent Training and Information Center for children with disabilities. They offer publications, workshops, and other resources to help parents make decisions about education, vocational training, employment, and other services for children with special needs.
Michigan Alliance for FamiliesSpecial Education Advocacy for families in Michigan. Note: for non- Michigan residents, you can search similar websites for your state in thePTACdirectory.
Wright’s LawSpecial Education Law and Advocacy, created by two lawyers, Peter and Pam Wright (husband and wife), providing legal assistance and information for parents of special needs children.
Contact Information for Kathy Holkeboer – (note: Kathy is a special education advocate in the State of Michigan, and works primarily in the West Michigan region. Residents of other States or regions in Michigan should consult the PTAC directory for Special Ed Advocates in their area). Holkeboer Advocacy-Facebook page.
Revisiting Special Parents Confidential Episode 10 Special Education.
It’s IEP Season, and we’re revisiting some of our older episodes that have information that will help you with the process. In this episode, we find out what Special Education is all about.
Special Education.
In this episode we take a look at the world of Special Education. What exactly is Special Education? How do teachers become Special Education teachers? How and why has the concept of Special Education changed over the years from isolation and institutionalization to mainstreaming and inclusion, and has it worked? How do researchers determine what works and what doesn’t work? And are the current budget problems that so many state governments face affecting Special Education in our schools?
Our guest for this episode has answers to all of those questions and many other questions. Paula Lancaster is a Professor of Special Education and the Chair of the Special Education, Foundations, and Technology Department at Grand Valley State University in West Michigan. We talked about a wide range of issues including the questions above, as well as discussing some of the major misconceptions about Special Education; the differences in how Special Education is handled by public schools, charter schools, and private schools; how Special Education changes from elementary school to middle school, to high school, and college; to the importance of special needs children learning to advocate for themselves; how to make sure that the information you’re finding is proven to work versus a marketing scam; and a lot more. This is one of the longest episodes of Special Parents Confidential that we’ve recorded, but Paula shares some very important information that you and everyone who is interested in Special Education need to know.
Links Mentioned In The Podcast:
What Works Clearinghouse– The Institute of Education Sciences. Providing educators (parents can use it too) with the information they need to make evidence based decisions.
LD Online– Learning Disabilities Online. The world’s leading website on learning disabilities and ADHD.
Note: Paula’s advice on researching information: Whenever you encounter a site that you’re not certain whether the info is credible, scroll down to the bottom (or check ‘about us’ info), and find out who is responsible for the website content.
The Self-Advocacy Strategy– Paula and Sean Lancaster’s software package that teaches children the strategies of negotiation and self-advocacy. Great for all kids, not just special needs children.
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.
Revisiting Episode 21 Special Parents Confidential IEP And The Law.
It’s IEP Season and we are Revisiting Episode 21 Special Parents Confidential IEPS And The Law.
Individualized Education Plans. IEPs for short. Possibly one of the most stressful times for parents of special needs children. IEP meetings are those annual events when parents meet with schools to plan out the kinds of help and services their special needs children are going to receive for the next school year.
IEP meetings are very long, sometimes taking two hours or more, and usually filled with terminology that can sometimes be overwhelming. Parents are expected to understand a huge amount of information and make decisions on what kind of educational support their child will receive in the next grade year. The problem is for many of us, we don’t even know how our kids are going to do from week to week, much less three or four months later, after the entire summer break.
Typically the schools bring in the teacher, the special education teacher, any school therapists, the school social worker, and the Principal or Vice Principal of the school. Sometimes the school or district psychologist will attend, sometimes the district’s Director of Special Education will also attend. There can be as many as ten to fifteen people representing the school in these meetings. It is very easy for parents to feel ‘ganged up on’ or intimidated, especially when there is often only one or two parents in the room.
This is where Attorney Advocates can help. Lawyers who work in special education advocacy and mediation are trained in all areas of special education law. They can be the parent’s voice in the room and they know exactly what the laws are in what the school should be doing for your child and whether your concerns are being addressed.
Our guest on this episode of Special Parents Confidential is Attorney Randi Rothberg who’s firm, Thivierge & Rothberg is a Special Education Law Firm based in New York City. She and her partner, Christina Thivierge focus exclusively on representing families of children with special needs, including attending IEP meetings, mediation, Due Process, and, when necessary, litigation in the State and/or Federal Courts. She talks about some of the problems that can arise when parents face an IEP meeting, how to prepare for those meetings, what to watch out for when you’re faced with things you don’t agree with in an IEP, and how to look for an advocate in your area. Randi also does advocacy work for issues of bullying in schools and discusses addressing those situations.
LEGAL DISCLAIMER:
Some of the legal issues Randi discusses are general, however some points, such as the “Parent Member in IEP meetings” are specific to New York State and may not apply in your State, or Country. Please consult a Special Education and Disability Law Attorney or Special Education Advocate in your area for complete information on your State laws and your rights.
Here are the links mentioned in the podcast:
Thivierge & Rothberg PC– Representing children and adolescents with disabilities in New York & New Jersey
ADHD Nation, Children, Doctors, Big Pharma, and the making of an American Epidemic, is a new book by New York Times correspondent Alan Schwarz, that is putting a lot of focus on ADHD and the way it’s diagnosed and treated in the United States. Alan Schwarz is the Pulitzer Prize nominated investigative reporter who wrote more than 100 articles that helped expose the serious problems of concussions in football players of all ages. His work lead to movies and documentaries about the seriousness of concussions and to the NFL finally admitting the problem and making changes in how they deal with the problems.
Since then Mr. Schwarz has begun investigating ADHD diagnosis and medications, writing a new series of articles on the subject that lead to the publication of ADHD Nation.
Excessive Diagnosis?
Mr. Schwarz has done an intense amount of research in the hard statistical evidence that shows an often higher number of children and adults are being diagnosed with ADHD than what the established rate of diagnosis is supposed to be. In fact, it’s nearly three times the established number, which means millions of people more than expected are being diagnosed, or often misdiagnosed. He also profiles a number of the major names involved in the diagnosis and treatment of ADHD all the way back nearly 200 years when the symptoms we now associate with ADHD were first recorded. Along the way we meet Dr. Keith Conners, who has been called “the father of ADHD”, and we learn his concerns about how his work has been misused.
A Fair Balance.
ADHD Nation is a very well balanced book, in that it doesn’t attempt to deny that ADHD is a valid medical condition. In fact the book opens with the statement, “AHDH is real.” Mr. Schwarz proves that in the correct circumstances ADHD medications work and are highly effective. But, as you’ll hear in this interview, far too many people, especially children, are being put on the medications when they clearly do not have ADHD and don’t need medications. This is an important book and you’ll learn how Mr. Schwarz researched the numbers and compiled the evidence that he presents in the book.
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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It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Always Call Your Doctor First.
You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults. As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.
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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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MSU Announces Study for Kids with Cerebral Palsy in Michigan.
A new Conductive Education Evaluation Project (CEEP) study is being conducted by the Department of Epidemiology and Biostatistics of Michigan State University. They are looking for children in Michigan who have been diagnosed with Cerebral Palsy, and are between the ages of 2 and 6.
From the brochure:
“Conductive Education (CE) combines the development of physical, social, and thinking skills in a daily educational program for children with motor disabilities such as CP or spina bifida. It’s goal is to teach children how to make the most use of their muscles and to encourage social interaction and independence. Children learn in a small group setting with attention to individual needs. Many CE activities use rhythm, music, a specially designed exercise equipment.
Conductive Education was developed in Hungary in 1945 and is currently practiced in over 30 countries. Grand Rapids’ private, non-profit Conductive Learning Center was established in 1998. Find more information about CLC’s work at its website: Conductive Learning Center.”
Who Is Eligible To Participate
“We’re recruiting 2-6 year olds who are residents of the State of Michigan, diagnosed with cerebral palsy, offering a free 4-week session at the Grand Rapids, Michigan Conductive Learning Center, whose program we are studying. Because CEEP is funded by the Michigan Department of Education, children must be state residents to participate.”
What happens when you enroll?
“You and your child will be interviewed by the CLC director for eligibility in the study.
If eligible, your child will be assessed with standardized tests to learn about their movement abilities. These assessments can be enjoyable for children. Assessments will be videotaped with copies available on request.
Parents will be asked to complete several questionnaires about their child’s physical and social skills and activities.
At no cost, your child will receive a four-week Conductive Education session (a total of 60 to 100 hours) at CLC.”
The Conductive Education Evaluation Project (CEEP)
“CEEP is a research project designed at Michigan State University by the Cerbral Palsy Outreach Network (CPON) team. The study will compare the effectiveness of Conductive Education to other cerebral palsy services for children ages 2-6. Families will be asked to participate i a free four week long Conductive Education session that fits their child’s age and abilities.”
How To Enroll:
Download the following CEEP Study Brochure .pdf for more details.
Deborah Weiland, MSN, CEEP Study Coordinator Department of Epidemiology and Biostatistics 909 Fee Road, B601 Michigan State University East Lansing, MI 48824 Ph: 517-432-7182 / Toll Free 877-417-6824 Email: dweiland@epi.msu.edu
