Category Archives: Blog

Special Parents Confidential 46 Sensory Processing Disorder

Sensory Processing Disorder.

Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.

Not A Symptom of Something Else.

For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder.  And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.

SPD Parent Zone.

My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.

If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.

Links Mentioned In The Episode.

SPD Parent Zone

SPD Parent Zone Podcast on iTunes

SPD Foundation – The Star Institute For Sensory Processing Disorder

The Sensory Processing Disorder Resource Center

Support Special Parents Confidential.

If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have a Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!

Thanks for listening.

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Special Parents Confidential 45 Soledad O’Brien

Soledad O’Brien Interview.

A few months ago, while in a doctor’s office for a checkup, reading the usual magazines, my wife happened to see an article about Soledad O’Brien. She talked about her son Jackson, who was having issues in school with behavior and not understanding instructions from the teacher. Finally, Jackson was diagnosed with 80% hearing loss and is now receiving special support help in school. The interview detailed much of the work that Soledad does, not only for her own children’s education, but also her charity, The Starfish Foundation, which helps support education for middle to low income girls in school.

The article inspired us to get in contact with Soledad’s production company to ask if she would be willing to talk about some of the work she does and the issues that matter to her most about education and special education in America, and around the world. We’re pleased to say that she graciously agreed and this is episode is the resulting interview.

A Great Advocate For Education

As you listen to hear speak, it’s clear that Soledad O’Brien is not only a great advocate for education, but she stresses the importance of all parents being involved in their children’s education, whether the child is in special education or general ed. She is also passionate about the need for proper funding for public education and special education. As she says in the interview, “…the amount of money that it takes to keep people in prison could pay for them to go to Harvard.”

Links Mentioned In The Podcast

The Interview With Soledad O’Brien In Health Magazine (online at WebMD).

Starfish Media Group – Soledad O’Brien’s Production Company

The Starfish Foundation – The education charity founded by Soledad O’Brien and her husband, Brad Raymond.

Matter of Fact. New in-depth interview program produced and hosted by Soledad O’Brien.

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Special Parents Confidential 44 Alix Generous

Alix Generous.

In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.

Living With Aspberger’s Syndrome

As a child, Alix Generous was misdiagnosed with the wrong disorder and had a  great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.

At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.

Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.

She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:

“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”

Links For Alix Generous

How I Learned to Communicate My Inner Life With Aspberger’s – Alix Generous’ Ted Talk Speech on the Ted Talk website.

Alix Generous Website 

Facebook Alix Generous Page

Twitter Account for Alix Generous

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Special Parents Confidential 43 Special Education Rights

Special Education Rights.

For many parents of special needs kids, special education rights continue to be the main cause of concern and worry. Are our kids being given the right accommodations in school? Are the schools being held accountable for special education services, and who is supposed to be checking to see if they are? 

Further, with a push in this country to seriously consider doing away with public schools and instead moving into privatizing the public education system into a for-profit model, where does this leave special education and what rights will parents of special needs kids have if it happens?

What Are Your Education Rights?

Back in October of 2016, I attended a rally for Special Education that was held in Lansing, Michigan. Among the speakers at the rally was our guest for this episode, Kristen Totten. She is an education attorney with the American Civil Liberties Union of Michigan (ACLUMich). Kristen spoke at the rally about the special education rights that the ACLU is working on to help our kids. I asked her to be a guest on the podcast and she agreed.

For this episode we talked about the current state of special education rights in Michigan and across the United States, how some states, like Michigan, allow Charter Schools to reject special education students even though they are required to accept them, and what parents can do to get involved to make sure the education rights of their children are being met.

Update: A Major Victory.

One of the issues we addressed in the podcast is the work that the ACLU of Michigan has done along with Lt. Governor Brian Calley in eliminating the use of restraints and isolation on children in schools. And I’m pleased to be able to say that within 24 hours of our interview being recorded, the Michigan State Senate passed the bill that ends the use of those in all schools.

Links Mentioned In The Podcast.

The American Civil Liberties Union of Michigan

ACLU Michigan: Ehlena and Wonder’s Supreme Court Case

What’s Up With Lead Levels in Flint (Michigan) Schools?

ACLU Local Affiliates Directory Connect with your State’s chapter of the ACLU.

Remember to share Special Parents Confidential with everyone you know. Simply use the social media buttons below this post.

Also be sure to sign up for our email list. We have news and articles coming up next year that won’t always get mentioned in the podcast episodes, but if you are on our email list, you’ll get that information delivered right to your inbox (along with each new episode when it’s posted online). 

 

 

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Special Parents Confidential 42 Understanding Learning Disorders Part 2

Understanding Learning Disorders Part 2.

ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.

This Episode Is Part Two.

My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.

Dr. John McCaskill, of McCaskill Family Services in the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.

Dyslexia, Dysgraphia, Dyscalculia and Other Learning Disorders.

In this episode, Dr. McCaskill talks about Dyslexia, Dysgraphia, Dyscalculia, and other learning disorders. He breaks down exactly what each disorder is, how it affects those who have it, and what kinds of treatments and therapies can help. He also discusses how to advocate for your special needs child with schools to make sure the school is offering not just the appropriate help, but the correct kinds of help; how families need to ensure that they are also supporting kids with special needs the right way at home; and how parents can make sure they are finding the right kinds of therapies and treatments for their kids outside of school. 

As always, please share this episode with everyone you know. Just use the social media buttons at the bottom of this posting.

Further Information.

McCaskill Family Services Located in the Detroit, Michigan Area.

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Special Parents Confidential 41 Understanding Learning Disorders Part 1

Understanding Learning Disorders Part 1.

ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.

This Episode Is Part One.

My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.

Dr. John McCaskill, of McCaskill Family Services in the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.

Learning Differently.

In this first part of the interview, Dr. McCaskill discusses the many misconceptions and incorrect beliefs about learning disorders. People with learning disorders are not lazy. They’re not deliberately refusing to learn. They have, according to Dr. McCaskill, ‘glitches in the brain’ that causes them to learn differently, and given the correct methods, they can be educated just as successfully as those who don’t have those issues. He also goes into great detail about ADD and ADHD, what Attention Deficit Hyperactive Disorder is, and just as importantly, what it is not.

As I say in my introduction to this episode, what you’re about to hear is nothing short of a master class in learning disorders. 

Of course please be sure to share this episode with everyone you know. Just use the social media buttons at the bottom of this posting.

Further Information:

McCaskill Family Services, located in the Detroit Michigan Metro Area.

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Special Parents Confidential Episode 40 Child Medication Errors.

Child Medication Errors.

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 subject 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. The study is called Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment, and it’s the first time a study was done on how accurately parents measured out medicine dosages using standard medicine measuring tools. It was conducted at three separate clinics in New York City, Stanford California, and Atlanta Georgia. Over two thousand parent volunteers enrolled in the study to have their measuring accuracy evaluated.

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.

Our guest for this episode is our friend, Dr. Patricia Schultz, who is an Osteopathic Physician and medical consultant in Chicago. She 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. You’ll find out how to prevent Child Medication Errors.

Links Mentioned In This Podcast:

Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment – The full study reported from the American Academy of Pediatrics. You can read the entire article on the website or download a .pdf copy.

Third Party Evaluation Programs for the Quality of Dietary Supplements – from the American Botanical Council’s HerbalGram. This article introduces the seven United States based institutions that exist who certify the quality and reliability of herbal supplements, dietary supplements, and homeopathic medications.

The American Academy of Pediatrics – The best source of accurate and credible medical information for children.

Reminder…

Please share this episode and any episode you’ve found interesting with all your contacts on social media. We’ve made it easy to do with the social media buttons at the bottom of this and each post. Also be sure to subscribe to our email list so that you’ll get future articles and podcast episodes delivered right to your inbox the moment they go online. The more you can help spread the word about Special Parents Confidential, the better we can continue these podcasts. Thanks for your support!

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SPC Is Now On BlogTalkRadio

SPC Is Now On BlogTalkRadio! 

We’re pleased to announce a major step forward for the future of Special Parents Confidential. After a great deal of consideration, we have joined one of the biggest podcast networks in the world, BlogTalkRadio. Some of the biggest names in podcasting are listed with BlogTalkRadio and we are thrilled to have Special Parents Confidential join that lineup.

What’s going to change? As far as how you can listen to us, not much. No matter how you choose to listen, whether it’s here on our website, or on one of our other subscription services, you’ll still access us the same way as always. But you now can also access us on BlogTalkRadio.

The Main Change.

However, there will be one change, and that’s advertising. You will now be hearing advertising during the podcast. Two commercials will run for every 20-30 minutes of episode length. The reason for this is we are at the turning point for Special Parents Confidential. I am very interested in expanding the audience reach of the podcast and would like to be able to bring you more episodes. Additionally we are hoping to add news features to each episode, and offer more content articles. 

As you can understand, for those opportunities to happen, we need to generate income. We will do our best to be careful as to what kind of advertising content will be allowed, and I am working with the team at BlogTalkRadio to ensure that you won’t hear anything objectionable.

Email Subscriptions

In the coming weeks, we will be adding more articles as part of our blog. These will be features from reputable news sources and medical sources, including some that will be written by our colleague and podcast guest, Dr. Patricia Schultz. However those articles may not get more than a quick mention in an episode. 

To ensure that you are able to see those articles as soon as they are published, make sure you subscribe to our email list. You’ll get every latest posting, including notifications on new episodes of Special Parents Confidential delivered right to your inbox. 

A Big Step Forward

For the past four years we’ve worked to ensure Special Parents Confidential presents accurate and credible information as a resource for parents of special needs children. Our new partnership with BlogTalkRadio will allow us to continue that purpose well into the future. I hope you continue to listen and that you participate with us as we grow our audience. Be sure to like us on Facebook, Twitter, Google Plus, and all the other social media platforms we list. We are interested in your feedback and those are the best places to let us know what you think.

As always, thanks for listening!

John Pellegrini

Special Parents Confidential Episode 39 All About Clubfoot

All About Clubfoot.

Clubfoot is one of the most common birth defects and can cause serious disabilities for those born with it. The foot can be turned severely inward so that, if untreated, a child will start to walk on their ankles, or in some cases, on the tops of their feet.

For over a century or more treatments for clubfoot consisted of small casts or EFO boots and radical surgery to the bones and tendons of the foot. This treatment was done without fully understanding how the bones, tendons, and muscles of the foot grow and develop over the years. People who are given this type of treatment are left with feet that appear straight, but typically develop arthritis and have difficulties in walking as early as age 20.

However, in the past fifty years a new treatment has emerged for Clubfoot that typically avoids any surgery and instead corrects the foot with manipulation, casts, and a brace bar. It’s known as the Ponseti Method of treating clubfoot, and it’s proven to be highly effective with an over 85 percent success rate.

Our guest for this episode is Dr. Michael David, who is a podiatrist at Foot and Ankle Specialists of West Michigan. Dr. David is certified in the Ponseti Method of clubfoot treatment. He talks about how Dr. Ignacio Ponseti developed his non-surgical treatment for clubfoot and how the treatment works. He also talks about the training a physician goes through to become certified in the Ponseti Method of Clubfoot treatment, and what parents should know when looking for a physician who is certified in the Ponseti Method.

Links mentioned in this episode:

Foot and Ankle Specialists of West Michigan 

Dr. David’s Profile on the FASWM Website 

To The Parents of a Child Born With Clubfoot – Article from the University of Iowa Children’s Hospital written by Dr. Ponseti explaining his treatment methods.

A Reminder: Please share Special Parents Confidential with your friends, family, and  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, Instagram, Snapchat, or other social media sites. 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, Poddirectory, and Google Play as a free subscription. Additionally, please consider writing a review about our podcast on any 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!

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Special Parents Confidential Episode 38 All About ER

All About ER.

For some parents of Special Needs Children, trips to the ER – Emergency Room – can become as frequent as going on family outings. Those trips can be frightening for both the parents, the special needs child, and the siblings. What can parents do to minimize trips to the ER? When is a trip to the ER necessary?  What can parents do to minimize their children’s fears when going to the emergency room? Additionally, what should parents do to make sure their concerns are being met? 

For this episode, we are fortunate to have as a guest, Doctor 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 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 this episode are for informational purposes only. Always talk your family physician or pediatrician before trying any kind of medical treatment, therapy, or medication.

Links Mentioned In This Podcast

American Academy of Pediatrics – Their main website page.

Healthy Children From The AAP – Website from the American Academy of Pediatrics that allows for customizing your family health information.

The Mayo Clinic Symptoms Page – Database of illnesses, symptoms, and first aid treatments.

A Reminder: Please share Special Parents Confidential with your friends, family, and  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, Instagram, Snapchat, or other social media sites. 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. Additionally, please consider writing a review about our podcast on any 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!

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Special Parents Confidential Episode 37 Act Early.

Learn The Signs. Act Early. 

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.

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.

Important Links From The CDC:

Learn The Signs. Act Early.

Developmental Milestones.

Printable Milestones Checklist pdf.

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.

What To Do If You’re Concerned.

The National Center on Birth Defects and Developmental Disabilities. – Resource website from the CDC with great information on many issues for parents of special needs children.

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!

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Special Parents Confidential Episode Transcriptions Are Now Available

Special Parents Confidential Episode Transcriptions Are Now Available.

To all of our listeners:

When I first launched Special Parents Confidential in January of 2013, my goal was (and remains) to provide accurate and credible information for parents of special needs children. My other goal was that these episodes would be free of charge. 

I’m fortunate to say I have achieved both those goals. However, despite that there is no charge to listen to these episodes, there are expenses to creating the podcast. Hosting the website, time spent recording and producing the episodes, and promoting the podcast on social media, are some examples. During all this time, Special Parents Confidential has been entirely funded by myself. The result is, because of the costs, and the commitments I have with a full time job, I can only produce these episodes in my spare time, which isn’t very often.

How You Can Help

To help lower these costs, I would like to ask for your help. Special Parents Confidential episode transcriptions are now available on Amazon Kindle Books. The transcriptions sell for only $5.00 USD for the one time download, and is available to listeners in other countries as well.  Each transcription is in the Kindle eBook format, and contains active links to every website mentioned in the podcast. The Kindle Book Reader is a free app, available for multiple operating systems. You can download it on the Kindle Website here.

The first episode transcription that we are offering for purchase is one of our most recent podcasts. Medical Advocacy Episode 35 with Teri Dreher, RN, of North Shore Patient Advocates. You can find this transcription by clicking here. 

In the coming weeks I’ll be posting other episode transcriptions. If there is a particular episode that you would like to see transcribed, please Like our Facebook Page. Then you can let me know your preference in our status space.

If you have found any information in our episodes useful, purchasing a Special Parents Confidential Transcription eBook is a great way to help support us. This way we can continue producing more episodes in the future. My next goal for Special Parents Confidential is to be able to provide a new episode at least once a week. Your support, through purchasing these transcriptions, can help make that new goal a reality.

Want to help even more? Please be sure to post a review of the episode transcription on the Kindle page. You can also share this post, and your review, with all of your social media sites.

To purchase your eBook Transcription of Special Parents Confidential Episode 35 on Amazon Kindle Publishing, click here.

Thanks for your support!

John Pellegrini

Special Parents Confidential Episode 36 Mentoring Programs

Mentoring Programs

Mentoring programs for children are some of the most successful social and educational support systems available. 

Many experts on child education will tell you that having someone who can mentor, coach, or demonstrate to kids how to do things outside of school and family is vital. Being able to talk to an adult mentor who can help a child with school goals and career choices can make a huge difference for a child’s confidence and outlook. Significant studies over the years have shown that kids who have been helped through mentoring programs are less likely to get into trouble in school, become more confident about their school performance, and get along better with their friends and families.

Now there’s a mentoring organization just for kids with special needs. Project Ready Set Goal , based in Grand Rapids, Michigan, offers mentoring for children with learning disabilities and physical disabilities. They help kids with academic and career guidance, building leadership skills, and help with social issue strategies and learning how to advocate for themselves. And it’s all done for free.

In this episode we talk with Janine Thomas, executive director of Project Ready Set Goal to find out more about the services and help they provide. She talks about their screening process for mentors, gives examples of how mentoring programs can help kids with school, as well as their future life choices.  Janine also talks about why she wanted to focus on mentoring for special needs children, and how she hopes that her idea will grow across the country.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!

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Special Parents Confidential Episode 35 Medical Advocacy

Medical Advocacy.

One of the continuous aspects of having a child with special needs is medical care and medical issues. Parents of special needs children often find themselves visiting medical facilities as often as they visit family or friends. Sometimes more often.

Understanding the medical issues our children have, however, isn’t easy. Too often the medical experts we see are not always able to give us the answers we need when we need them. Or in some cases the answers we get create even more questions. Sometimes parents turn to the internet to understand more about the issues and challenges our kids face. But the internet is not always a reliable source of information, and that can lead to poor choices, and bad outcomes that could have been prevented if the parents had access to the right help when they needed it.

With the increasing ‘corporatizing’ of the American medical industry, and insurance companies regulating how medical care can be done, with the emphasis being placed on cost-efficiency, parents can be left confused and uncertain about the care their children are being given. Medical groups and insurance companies are trying to address this situation by offering in-house medical advocacy services, but there are doubts as to whether those services are being made for the good of the patient or the good of the industry.

In the past few years a new kind of service business has taken root: private professional medical advocacy. These companies are usually medical professionals, such as Registered Nurses, who work exclusively for the patients or their caregivers and guardians. Their role is to advocate for the families to make sure that the medical companies and the insurance companies are offering the care and services that the patient really needs.

One such business is North Shore Patient Advocates, based in Chicago. John recently spoke to their President and Chief Advocate, Teri Dreher, RN, to find out about some of the problems that families can encounter when dealing with medical groups and the health insurance industry, and how private medical advocates can help families.

Links Mentioned In this Podcast

North Shore Patient Advocates – Family medical advocacy services based in Chicago, IL.

Alliance of Professional Health Advocates – International database of health care advocates for the United States, Canada, and Worldwide.

National Association of Healthcare Advocacy Consultants – National database of health care advocates.

Or, google search Private Professional Healthcare Advocates for your area.

 

 

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Special Parents Confidential Episode 34 Down Syndrome

Down Syndrome. Myths and Facts.

Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics of Down Syndrome, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about Down Syndrome and how it affects those who have the disorder.

Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with Down Syndrome is nowhere near as bad as some people believe.

Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan. They offer a variety of programs and services to help and inform everyone who has interest in Down Syndrome. 

We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions about Down Syndrome and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.

Links to Websites mentioned in the podcast:

National Down Syndrome Society 

National Down Syndrome Congress 

Down Syndrome Affiliates in Action 

Global Down Syndrome Foundation 

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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Special Parents Confidential Episode 33 Lt. Governor Brian Calley Returns

Lt. Governor Brian Calley Returns.

What a difference a year can make. In December of 2014, the Michigan Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. However, during the only Public Comment time the committee allowed, Michigan’s Lieutenant. Governor, Brian Calley asked the committee to suspend the meeting and take no further action, because he felt that there had not been an adequate amount of time to allow parents to have input into the rules changes.

What followed next, in 2015, was an unprecedented listening tour undertaken by the Lieutenant Governor. He traveled around the State, holding public meetings where he listened to parents of special needs children talk about their concerns. These meetings were up to two hours in length, during which the Lt. Governor said very little and allowed every parent who attended to speak.

I was privileged to attend the meeting the Lieutenant Governor held in Grand Rapids, and had a chance to ask him if he would be a guest on Special Parents Confidential to talk about his efforts. That interview took place in June and you can listen to it here – Special Parents Confidential Episode 24.

In November of 2015, Lt. Governor Calley completed his listening tour and compiled a report summarizing the key points from parents for Michigan Governor Rick Snyder, who then appointed Lt. Governor Calley to head a Special Education Reform Task Force, which would take the Lt. Governor’s report and make a recommendations strategy for the State Board of Education. That report was presented to the Board of Education in January of 2016.

We are very pleased that Lt. Governor Brian Calley has taken time from his schedule to talk to us on Special Parents Confidential about the Special Education Reforms that the Task Force has recommended, and what Michigan families can do to help. Lt. Governor Calley also talks about a new project that he and Michigan Supreme Court Justice Richard Bernstein (who I interviewed in August of 2015 – Special Parents Confidential Episode 30) are working on together, called the Hidden Talent Tour.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!

Links mentioned in the podcast:

Michigan Lieutenant Governor Brian Calley’s Website

Summary of the Special Education Reform Task Force Recommendations

Full Report of the Special Education Task Force (.pdf form)

Information on the members of the Special Education Task Force

Information on the Michigan Hidden Talent Tour 

Michigan Senate Website – including the Find Your Senator link

Michigan House Website – including the Find Your Representative link

 

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John Pellegrini Will Speak At The 2016 Kent ISD LEAP Conference

John Pellegrini Will Speak At The 2016 Kent ISD LEAP Conference.

I am very excited to announce that I’ve been invited to give the keynote speech at this year’s Kent Intermediate School District LEAP Conference.

LEAP, which stands for Lead Empower Assist Parents is a day-long six hour conference, scheduled for Saturday, March 12th, 2016, for parents of Special Needs Children in Kent County, Michigan. The workshop is designed for parents and providers of children with special needs to meet with area experts, educators, therapists, and other organizations who work to help children with special needs. Exhibitors, vendors and service providers will be on hand throughout the day to share resources and answer questions.

Many presenters at this year’s LEAP Conference have been guests on Special Parents Confidential and they will be talking in greater depth about their services. For my own Keynote Presentation, I’m going to talk about Special Parents Confidential, why I decided to create the podcast, and what I’ve learned in the three years that I’ve been doing these episodes. You’ll also have a chance to ask questions and I’m interested in hearing your ideas for future episodes.

Some of the breakout sessions during the day include legal planning for a child with disabilities, challenging behaviors: when typical parenting strategies aren’t working, caring for the caregiver, building communications skills through play, aided communication for early childhood, and much more. You’ll also be able to meet the presenters in the vending area. Free childcare will be provided throughout the day by the David D. Hunting YMCA.

There’s still time to register to attend the LEAP Conference. You can find out more information on the Kent ISD LEAP Conference Page, and you can register to attend the conference (cost is $15.00 per person) by Clicking on the LEAP Registration Page. If you live in the West Michigan area, I highly recommend you attend the Kent ISD LEAP Conference. Looking forward to seeing you there!

Kent ISD Leap Conference Page

LEAP Registration Page

LEAP Breakout Session Schedule.

Special Parents Confidential Episode 32 Death and Grief.

Special Parents Confidential Episode 32 Death and 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.

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.

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!

Links to Websites mentioned in the interview:

Ele’s Place – a Healing Center For Grieving Children and Teens

The National Alliance For Grieving Children Resource website with a national and international directory for counseling and therapy centers for children who are grieving.

Sesame Street Video and Articles on Grief 

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Special Parents Confidential Episode 31 A Sibling’s Perspective

A Sibling’s Perspective.

What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?

As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings. 

In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.

Links To Websites Mentioned In This Podcast:

The Sibling Support Project – Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. 

Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.

The Sibling Survival Guide – A “How To” guide to being an adult sibling of a special needs person. 

Growing Up With Ben – The Blog Post that Aubrey wrote about her life and relationship with her special needs brother.

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Traveling For Medical Or Therapy Reasons – Some Tips

Traveling For Medical Or Therapy Reasons – Some Tips.

One of the most concerning dilemmas faced by parents of special needs children is the search for medical specialists. Whether it’s for physical disabilities, developmental disabilities, or learning disabilities, our kids have challenges that sometimes cannot be treated by standard family medical practices.

To complicate matters further, depending on where you live there may not be any specialists who are qualified in your child’s particular need. Furthermore, in some cases, complex issues arise that require a higher degree of specialty in your child’s issue.

The unfortunate fact is for many parents of special needs children, getting the right kind of medical or therapeutic services may require traveling long distances across a state or even several states in order to get the help needed.

We faced this situation a few years back, and after doing a lot of research, we were able to find services that made traveling a lot easier and less stressful.

Car Rentals. 

When making repeated day trips — traveling by vehicle to and from your destination — you might want to consider renting a car instead of putting all the miles and wear on your own vehicle. Here are some tips on car rentals:

Renting a car from an agency that is not located at an airport is usually cheaper. Car rental offices located at airports or transportation hubs charge extra return and usage fees that are typically waived at off-site car rental offices. Car rental agencies usually have a greater number of small to mid-size cars for rent than large sedans, vans or SUVs, so you’ll have an easier time getting the vehicle you want if you can take a small to midsize model.

Most car rental agencies offer unlimited milage in their packages. However, almost all of them have a two to four state restriction on where you can drive the car. For example, if you rent a car in Chicago, you may be restricted to travel only in Illinois, Indiana, Michigan, and Wisconsin (or fewer states). Be certain to ask the rental agent if you need to travel further than your region. The only rental agency we found that has absolutely no restrictions on inter-state travel within the 48 contiguous states is Hertz… however be sure to ask because that may change without notice.

Travel By Air.

When traveling a greater distance than you can drive in one day, you may want to consider air travel. Two great organizations exist to help you make those flights for free.

Air Care Alliance. Air Care Alliance helps to coordinate public benefit flying groups like Angel Flight, Operation Angel Planes, Wings of Hope, and many more. They offer free travel for medical needs on private planes in the United States, as well as international public benefit flight groups. 

Because Air Care Alliance works with private plane owners with all different kinds of aircraft you might fly on anything from a corporate jet to a small four passenger plane, depending on your needs. This service can accommodate small town airports that are not often served by commercial flights. Check out Air Care Alliance’s directory of groups that they work with:          Air Care Alliance Groups Directory

Miracle Flights. Miracle Flights – How We Help Miracle Flights offers free commercial airline travel from frequent flyers who donate their milage awards. They also work with the airlines for accommodations and accessibility for specialized medical needs. Miracle Flights has free travel available on domestic U.S. flights, as well as International flights, and can even help families accommodate service dogs on flights.

Overnight Stays.

Let’s face it, hotels can be expensive and a stay in one for medical or therapy reasons is typically not covered by health insurance plans. Fortunately there are some options that are very affordable and offer great services for special needs children.

The most well known are the Ronald McDonald Houses. Most RMH locations offer accommodations for families of children up to age 18 receiving medical or therapeutic care. The facilities are equipped with all accessible rooms, elevators, indoor play areas, libraries, video game consoles, and other fun areas for kids. Some also have outdoor accessible playgrounds. Rooms vary from two beds and a bathroom, to family rooms with living rooms and dining tables, a kitchen, and one or two bedrooms. Laundry facilities are available and a group kitchen and dining room are also included for all guests. Most RMH facilities also offer transportation services to the hospitals or clinics where you need to go, as well as transportation to local airports, train stations, or bus depots.

Ronald McDonald House facilities typically offer overnight stays for a donation of up to twenty five dollars per night, depending on location and availability, but can work with families on ability to pay with free of charge options. If the RMH you are hoping to stay with does not have a room available for the night you need, they can offer vouchers for greatly reduced rates at nearby hotels of up to seventy five percent off a regular night’s stay, depending on availability. It’s best to call the local RMH near your destination for detailed information and reservations.

Other options: Check with the hospital or clinic that you are traveling to for other recommendations on overnight stays. Some offer hotel style rooms for families right within their facilities. There may also be other accommodation services for family medical stays in the nearby area that they can arrange for you.

Final Thoughts:

Traveling for medical or therapy reasons can be one of the most stressful things a family will go through. Take the time to research where you are going, how to get there, and where you will stay before you go. Ask lots of questions about accommodations, nearby facilities, even information on local grocery and retail stores. Get directions and use internet map services or GPS apps to help you figure out where you will be and how to get around. If you travel without a vehicle, find out about public transportation options and/or taxi services in the city where you are staying.

Get to know the city you’re traveling to with Wikipedia and Wikivoyage (formerly Wikitravel), especially if you’re going to have a stay of a few days or more, so that you will have options for things to do when you have some time to venture out for a break. This will happen. You’ll need a break from time to time… it won’t make you a bad parent to take a little time for yourself. You might also have time to take your child out for a little adventure between therapies or medical treatments. Knowing where to go for fun at those times will definitely help.

Planning ahead and lots of research will help you make the best of a difficult situation and make the experience better for your child.

Click on the link below for a downloadable PDF version of this article.

Traveling For Medical Or Therapy Reasons – Some Tips

Announcement From MI Lt. Governor Brian Calley

Announcement From MI Lt. Governor Brian Calley.

Back in June of 2015, we interviewed Michigan Lt. Governor Brian Calley about his concerns on special education, and his efforts to provide better inclusion for parents in the education process. You can listen to that interview by clicking Special Parents Confidential Episode 24 

Today we received the following email update from Lt. Governor Calley:

Good afternoon,

There is no doubt that educating a child with Special Education needs has its own unique challenges for parents and educators. It is important that we work to ensure Michigan’s system is the finest it can be to serve students and parents safely, openly and constructively. For months, I have traveled across Michigan to listen to parents and requested feedback via an online survey. I have made nine listening tour stops to date and heard from nearly 2,000 parents online. 

Now it is time for the next step. On Tuesday, September 8, I will be providing testimony before the state Board of Education regarding what I have heard and learned during this process and how we can all work together to make necessary improvements. The meeting will be at 11:30 a.m., at the John A. Hannah Building, Fourth Floor, 608 West Allegan Street in Lansing.
Please feel free to attend if you’re available. The Department of Education also will be livestreaming the meeting. The link will be available at www.michigan.gov/mde on Tuesday morning.

I have appreciated the input I received from many of you in person and online. Now it’s time to harness all of our efforts and work together to improve special education in Michigan for everyone. 

Sincerely,

Lt. Gov. Brian Calley

*****************

This is the final part of an extraordinary effort on the part of our Lieutenant Governor to help improve Special Education in Michigan. For the full details on why he is making this happen, take a listen to our interview in Episode 24.  

Be sure to view the live-stream coverage of the meeting on Tuesday September 8th at 11:30 am. Use this link to see it live: www.michigan.gov/mde

Special Parents Confidential Is Now On TuneIn

Special Parents Confidential Is Now On TuneIn. 

We are excited to announce that Special Parents Confidential is now available to access for free subscription on TuneIn.

TuneIn is a free media service featuring over 100,000 online radio stations and 4 million podcasts. Over  Fifty Million people have signed up to use TuneIn as their source for music streaming and online audio content. TuneIn has an app available for Android and Google Play listeners, which means you can use it to access Special Parents Confidential on all Android and Google Play devices.

Click on this text link: Special Parents Confidential on TuneIn, or use the TuneIn button located on the right of this post under “Follow Us”. You can also use the Sharing buttons below this entry.

We’re working to provide our listeners with the most accessibility to find and listen to episodes of Special Parents Confidential. Joining TuneIn is one more great avenue to find Special Parents Confidential, along with iTunes, Stitcher

Please share with your friends and family on all social media. Use the buttons below to share this post with any of the social media services listed below. And be sure to check us out on TuneIn.

Special Parents Confidential Episode 30 Blind Justice

Blind Justice.

Our guest for this episode of Special Parents Confidential is Michigan Supreme Court Justice Richard Bernstein. In November of 2014 he became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.

Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.

However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”

In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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Special Parents Confidential Episode 29 Sibling Support

Sibling Support.

Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood. 

The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.

How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.

In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.

Links Mentioned In This Podcast

The Sibling Support Project

Sibs UK – Sibling support for the United Kingdom

The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources  

The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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Special Parents Confidential Episode 28 The Mighty

The Mighty. 

Once in a while you come across a website that is just so compelling, so useful, and so helpful that you have to share it with everyone you know.

Thirty million people have done that with The Mighty. 

After finding out that his daughter had a rare genetic disorder, and his son was born with a health challenge, the founder of The Mighty, Mike Porath, decided to build a website where people could share their emotional struggles and help each other. As he says in his own article on why he started The Mighty, “Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability.”

The Mighty started out as a site where parents of special needs children can vent their frustrations, post their triumphs, and share with each other their experiences. They’ve grown beyond special needs to health challenges, and even posts written by people with special needs and health challenges who offer their own unique perspectives.

In this episode we talk to Mike Porath about The Mighty and how he brought the website together. He also talks about where he hopes to see The Mighty go in the coming years, and what he wants the site to become. It’s a fascinating story and a fascinating interview with a real visionary who just started off by asking a question: “What can we do about this?”

Below are some links to various articles on The Mighty that were mentioned in the podcast.

Mike Porath’s Current Favorite Story On The Mighty

The Mother Who’s Son With Autism Got A Special Invitation To A Party

The Man Who Invented A Font To Help People With Dyslexia

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!

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Special Parents Confidential Episode 27 Education Funding

Education Funding.

School districts across the United States are facing education funding problems. Whether through outright tax cuts, or reductions in revenue from State allocations, education budgets are getting smaller every year. 

Unfortunately in order to save funding for general education programs some districts have made the hard choice of reducing special education programs by eliminating support staff, teaching assistants, specialized therapists, social workers, intervention specialists, or any combination of staff who work with special education students.

Recently, one school district in Michigan has taken a bold step to help fund their special education programs. 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 initiative passed 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.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

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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Special Parents Confidential Episode 26 Parent Problems

Parent Problems

Parents of special needs children face problems that few others can understand. Extraordinary  joy and crushing despair, sometimes in the same day, the same hour, the same moment. One thing is true, people who relate the best to these moments are other parents of special needs children. We have a bond that, while often unspoken, is a shared knowledge that ‘this is our life’ and we all know exactly what it’s like.

For those who are just starting out on their journey with a special needs child, the fear and uncertainty can be very daunting. How do you cope? Where do you look for help? Who can you trust? And possibly the most important question of all, who understands what this means?

To help answer those questions, Donna Kirk has returned for another interview episode. Donna was my guest in Special Parents Confidential Episode 23, in which she talked about her book, Finding Matthew, the story of her son who was born with severe brain damage. She and her husband, Ed, experienced everything a parent of a special needs child could face. A terrible life-altering diagnosis, years and years of therapies, trying to find help for their son, watching him struggle into adulthood, and finally facing the hardest loss of all, the death of their special needs child.

After we finished the interview for that episode, Donna contacted me again and asked if she could talk about the lessons she learned and how they might help parents who are currently struggling and trying to cope with the emotional rollercoaster that raising a special needs child can cause. Top of the list for any parent, honesty and communication.

For more resources on specific issues, check out our Helpful Links page.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located on this page. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. You’ll find the form to do that to the right of this posting. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

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Special Parents Confidential Is Now On Poddirectory

Special Parents Confidential Is Now On Poddirectory.

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Follow the link to find Special Parents Confidential on Poddirectory by clicking here.

Poddirectory is a quick way to listen and search thousands of podcasts, including Special Parents Confidential. It’s done in a Facebook and Twitter friendly format, which makes searching and playing much easier while using your favorite social media site.  Be sure to repost and retweet our updates whenever you can!

We’re going to keep looking for great places for you to find Special Parents Confidential, and continue to make finding our podcast easier. Thanks for your support!

Special Parents Confidential Episode 25 Early Intervention

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:

1800EarlyOn Early 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.

Center For Disease Control (CDC) Page for Parents and Infants This page has the Milestones and Schedules information to track expected progress for infants and toddlers.

Great Starts Collaborative Early Intervention Page Success Starts Early’s webpage on Early Interventions. The entire site is full of helpful information for all parents.

Pathways.org  Free online resource and tools for parents.

The Early Childhood Technical Assistance Center Online resource tools for families of children with special needs.

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.

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Special Parents Confidential Episode 24 MI Lt. Governor Brian Calley

MI Lt. Governor Brian Calley.

Michigan, like many states, has been working on changes to laws in special education to make sure that the rules are up to date and following the laws that are set down in the Federal Individuals with Disabilities Education Act, or IDEA, which are the main requirements of how special education is to be handled across the United States.

Last December in Lansing, the Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. The Joint Committee was holding a public meeting to take comments from parents back on December 11th, when an unexpected guest stepped forward. 

Michigan’s Lt. Governor, Brian Calley asked that the Committee not approve the proposed changes and take no further action, because he believed that there needed to be more participation from parents in this process. The Committee agreed, and shelved the rules. Since that time, Lt. Governor Calley has embarked on a series of open meetings across the State of Michigan, where he invites parents to talk about their experiences with Special Education in their local districts. He’s also created an online survey for Michigan parents to highlight their experiences, both good and bad, in dealing with Special Education services in their districts.

What the Lt. Governor is doing is an extraordinary step in making sure that parents are more involved in determining special education procedures for their children in the IEP (Individualized Education Plan) process. We are very please to have Michigan Lt. Governor Brian Calley on this episode of Special Parents Confidential to talk about what the changes to the MARSE regulations would have meant, and the personal reasons why he’s made special education in Michigan an important priority.

Links that are mentioned in the podcast: 

Michigan LT. Governor Brian Calley – the official State Website.

Lt Governor Calley’s Online Special Education Survey

The Lt. Governor’s Facebook Page

PR.150610.CalleySpecialEducationSurvey – Press release with detailed explanation of Lt. Governor Calley’s online survey.

As always, a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes and Stitcher as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

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Special Parents Confidential Episode 23 Finding Matthew

Finding Matthew

For parents of special needs children perhaps the most stressful and anxious time is when you are first told that your child has problems. That first diagnosis is such a shock. You don’t know what to do, you don’t know what to think, and you feel completely overwhelmed with it all. One of the most helpful things for parents of special needs children is when they hear stories of other families who have already gone through similar experiences and have shared their story. The challenges and struggles are universal, no matter what the disability or the severity. Just knowing that someone else is out there facing the same worries and fears, and has taken the time to tell that story, can be very reassuring.

In this episode of Special Parents Confidential I’d like to introduce you to just such a parent. In 1970, Donna Kirk, who, with her husband Ed, is from a town near Toronto, Canada, had gone to the hospital for the birth of her first son, Matthew. But problems occurred and their baby had oxygen loss during birth and suffered severe brain damage. The next day their son was transferred to Sick Kids Hospital in Toronto where the doctor there told them that their son was basically, in his words, “a vegetable with a heartbeat”. This doctor advised them to institutionalize their son and have another baby as soon as possible… implying that they should just forget Matthew.

Donna and Ed ignored what the doctor told them and took him home as soon as they could. They fought for him and cared for him throughout his entire life and, in the process, proved that first doctor and many other people wrong about Matthew’s abilities. Ed and Donna had two other children after Matthew, a brother an sister.  Matthew died at the age of 40 in 2010, and Donna has written a book called, Finding Matthew, about his life, his challenges, and the struggles that she and her husband went through from his devastating diagnosis to his ultimately successful life and becoming a contributing member to society. The book shows how even the most severely disabled people have incredible gifts and how the family can work together to get through any adversity. It’s definitely a must-read for all parents of special needs children and their families.

Donna’s extraordinary book, Finding Matthew is available on Amazon Books, and you an click either of those links to take you  to the page. Donna Kirk also has a blog site where she posts resource information and updates. Just click on her name and you’ll be re-directed to her site.

As always, a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes and Stitcher as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

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Special Parents Confidential Episode 22 Vaccine Safety

Vaccine Safety

 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. 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?

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.

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:

American Academy of Pediatrics Immunization Webpage

The Center for Disease Control Vaccine Website

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.

Immunization Action Coalition and their additional website  Vaccine Information

The U.S. Department of Health Website on Vaccine Safety

Children’s Hospital of Philadelphia (CHOP) Vaccine Information Webpage

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.

Reliable Sources of Immunization Information – Link to downloadable pdf.

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!

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Special Parents Confidential Episode 21 IEPs and the Law

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

COPPA – Council of Parent Attorneys and Advocates

Wrights Law – Special Education Law and Advocacy

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

Thanks for your support!

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Special Parents Confidential Episode 20 Health and Wellness

Health and Wellness.

Perhaps no other subject is a greater concern to a parent than the health of their children. Parents of special needs children have an even greater concern because our kids often have disabilities or disorders that require specialized health care options. Some disabilities or disorders like Downs Syndrome can be diagnosed immediately at birth, if not sooner. Others like Autism or Dyslexia may take a few years. However, the one thing all health care professionals can agree on is the earlier you get a diagnosis for your child, the sooner you can get the right treatments and therapies, and that’s better for your child.

But where do you find the experts on your child’s disabilities or disorders, especially if you’re a first time parent and don’t yet have a family doctor or pediatrician? Often, a child can have more than one special need challenge, which can make medical decisions even harder. 

One place that offers a wide variety of services from medical checkups and advice to doctor referrals to support groups and beyond is your local county or city Health Department. Most Health Departments have a person or a group of people who support parents of special needs children with counseling, advice, and education. They can help you with ongoing support, including finding early on or early intervention programs with your local school district to get your child into special education programs that are the right fit for their challenges.

In this episode of Special Parents Confidential, John talks to Chris Buczek, RN BSN, who is the Public Health Program supervisor for Children’s Special Health Care Services of the Kent County Health Department in Grand Rapids Michigan. She also supervises the Hearing and Vision Screening Program for the Health Department, and runs a support group for parents of special needs children. And, as you’ll find out, she has a personal reason for her involvement in Special Health Services.

During the interview Chris talks about a number of websites for resources. The following are the links to those sites:

MDCH Children’s Special Health Care Services   

MI Family Center for Children and Youth with Special Health Care Needs

US DHHS HRSA Maternal and Child Health

CDC Parent Information Infants & Toddlers

CDC Important Milestones For Infants

NCMHI Children and Youth with Special Health Care Needs

American Academy of Pediatrics Bright Futures Page

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

Thanks for your support!

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The Numbers Are In!

The Numbers Are In!

When I started this podcast a little over two years ago I was hoping to be able to fill a need for parents or relatives or friends of special needs children and adults. I had no idea how many people would be interested, but I thought there would be ‘some’.

Until now I really had no idea how many people have seen the Special Parents Confidential website, or how many people were listening to the podcast episodes. We don’t have a large number of subscribers on iTunes… this is primarily owing to the fact that the file size for each episode is very large. My crazy insistence on having the sound quality as good as any FM radio station is the cause. Due to these large file sizes, it’s my belief that most of the audience is listening directly on the website rather than downloading the episodes.

Well now I have a better idea of just how many people have been checking out this ‘humble little podcast’. My webmaster guru recently ran a site stat report for me, and I wanted to share some of it here. The report contains large numbers of stats including activity, access, visitors, referrers, browsers, and errors (bots trying to gain access to stuff they’re not supposed to have – don’t worry they didn’t get anything). The numbers are in, and very detailed, so I’ll just post the two most important stats: Since we started in in January of 2013 until April 23 of 2015 (the date the report was generated), Special Parents Confidential has been visited 815,493 times; with 600,882 real people hits and 214,611 spider (bot) hits. More impressively, the total bandwidth usage has been 49.45 GBs. In radio terms, that’s (TSL) Time Spent Listening. This number represents both episode downloads and direct listening time.

Pronouncing the words, “I’m shocked” is a major understatement. I think the phrase, ‘my brain did backflips’ is more appropriate. These are far bigger numbers than I ever expected, or thought possible, given that I haven’t really gone out of my way to promote the site.
To everyone who has visited, listens, and continues to do both, thank you so very much! It’s gratifying to know there are so many more of you than I thought. You have my assurances that I’ll continue to produce episodes that cover subjects you want to know about. You should also know that you have a voice in this process too. Please like our Facebook page or Follow us on Twitter so you can comment directly on each episode (we monitor those the most frequently)*. Also feel free to share episodes and the website on your favorite social media sites.
Thanks!

John

PS- if you’re interested in sponsoring or advertising on our podcast or this website, please use our Contact Page, and I’ll send you a more detailed version of the stat report and we can talk things over.

*We use Facebook and Twitter for podcast comments, rather than a webpage ‘comments section’ in order to reduce spammer advertising.

Special Parents Confidential Episode 18 Living With Dyslexia

Special Parents Confidential Episode 18 Living With Dyslexia

Dyslexia is possibly the single most mis-understood of all disabilities. People who don’t have it think that those who do see misspelled words, or letters out of order, or even that they read backwards. But none of that is actually true. People with Dyslexia can recognize letters and words, and even sentences. The real problem is the comprehension component of reading is diminished, or in some cases not there at all.

New research has shown that there is a specific area in the brain that causes Dyslexia and the hope is that new treatments may come from that discovery. But those treatments are still a long way off and in the mean time many children and adults are continuing to struggle. Added to this is the fact that as of right now, March of 2015, only 24 states in America recognize Dyslexia as a learning disability and have specific treatment protocols for school districts to follow. That means that over half of the school age children in the United States who have Dyslexia are not getting the right kind of help, if they’re getting any help at all.

One of the aspects of children with special needs that many people don’t understand is that a child can have more than one specific disorder. A child may have ADHD, Asperger’s Syndrome, Autism, or Downs Syndrome, and also have Dyslexia. But if the main disorder is more prevalent, the Dyslexia may not be recognized or even noticed without a more intensive diagnosis.

Dyslexia is the best known of these disorders, and causes problems with reading comprehension. There is also Dysgraphia, which causes problems with handwriting, and Dyscalculia, which causes problems in mathematics comprehension. Over the next series of podcasts, we’re going to take a closer look at Dyslexia and the related learning disorders to try to get a better understanding of the causes and the treatments.

To begin, I wanted to get a better idea of what it’s like to have Dyslexia and how it affects the ability to read and learn. Fortunately a friend of ours is willing to talk about her challenges. Elizabeth D’Aurora is a third grade elementary school teacher in West Michigan and she has Dyslexia. She talks about some of the problems and difficulties she had in school. As an educator she also discusses treatments and therapies for Dyslexics and their effectiveness. As you’ll learn in this podcast, there is no ‘cure’ for Dyslexia. No one “overcomes Dyslexia”; instead the person learns ways to cope and strategies for learning that can help them in school and beyond.

For more information on Dyslexia and related learning disorders visit Understood.org.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

Thanks for your support!

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New Episodes Coming Soon

New Episodes Coming Soon.

We’re working on more interviews in the next few weeks. Some of the subjects we’re covering:

Did you know Dyslexia is only recognized in 24 states as a learning disability, with specific definitions and guidelines for special education? We’re doing  two episodes devoted to living with Dyslexia. We will be talking to an elementary school teacher who has Dyslexia to learn how she dealt with Dyslexia while growing up and how she now teaches. We’re also going to talk to a mother and son (the son has Dyslexia) who are working together on trying to get Dyslexia recognized as a learning disability in their state and other states.

We’re also going to talk to an RN with our local health department for medical advice and health issues that are important for special needs children and adults.

Be sure to subscribe to our social media pages, we’re on Facebook, Twitter, Google Plus, Linked In, and others where you can comment and give us suggestions for future episodes! Don’t forget you can subscribe to our email list, and find our podcast on iTunes and Stitcher.

We’re working on some big plans for this year to make Special Parents Confidential even better, so be sure to connect with us for all the news and updates as we go!

Finally, be sure to share our site with your friends and family. You never know who might be interested or have a need to know something we have here. We do these podcasts for you and your help in spreading the word is what keeps us going!

Thank you for your support!

John

Special Parents Confidential Episode 16 Gigi’s Playhouse Part 1

Special Parents Confidential Episode 16 Gigi’s Playhouse

For many parents one of the challenges in raising a child with special needs is finding the right therapy for your child. Sometimes we get lucky and find the right kind of therapy right near where we live. Unfortunately for some people there’s nothing nearby that can help. Travel can be an option depending on distance, and financial ability.  But for many the only option is to simply wait and hope that the therapy will someday come to them.

Then there are those who don’t wait. They decide that they will do what it takes to bring the therapy to their area to help others as well as themselves. Our guest on this episode of Special Parents Confidential is someone who is doing that right now.

Mika Vuto is the mother of a young girl with Down Syndrome. Although there are therapies available in her town of Gainesville, Florida, there was one group she had heard about, Gigi’s Playhouse, that looked like an incredible asset that could help many people… because they offer their services for free. Unfortunately the closest Gigi’s Playhouse was in Atlanta, Georgia.

Finally Mika decided to open her own franchise of Gigi’s Playhouse in Gainesville. She talks to us in this episode about her journey from a mom looking for help to a community leader who wants to make a difference for her daughter and many other families with members affected with Down Syndrome. She also talks about the services Gigi’s Playhouse offer to children and parents.

The Gainesville Florida Gigi’s Playhouse is scheduled to open in 2015. You can find out more about them and learn how to make a contribution to help by visiting their Facebook Page. You can also learn about their progress on their blog.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

Thanks for your support!

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When Your Child With Special Needs Is Banned From A Relative’s Home

When Your Child With Special Needs Is Banned From A Relative’s Home

This is one of those subjects that is hardly ever talked about, and yet can have a devastating effect on families. What would you do when your child with special needs is banned from a relative’s home? How would you react? Would you try to resolve the issue? Would you try to please the relatives who won’t tolerate your child’s different behaviors? Or would you react in a different way and turn the tables? Very insightful and well-written blog from a mom ‘who’s been there’, and offers some very sound advice.

The Friendship Circle is a fantastic resource organization for not only parents of special needs children, but for anyone who has any relationship with a special needs child. They were the subject of SPC Episode 13, and we interviewed Rabbi Tzvi Schectman who told us about the mission and the purpose of the Friendship Circle.

In addition to their blog that this article comes from, they also offer many resources including a campus for social help. Find out more by visiting their website and be sure to sign up for their email newsletter to get a daily posting with excellent advice right to your email inbox.

Special Parents Confidential Episode 15 Applied Behavior Analysis. ABA.

Applied Behavior Analysis. 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.

In this episode John talks with Conny Raaymakers, who is director of ABA serves at Developmental Enhancement Behavioral Health, a group that specializes in using ABA for the treatment of autistic children. 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.

UPDATED LINKS 10/02/2017

Developmental Enhancement Behavioral Health

Conny Raaymakers Profile Page

Email: craaymakers@debh.org 

Association for Behavior Analysis International

 

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.

Thanks for listening!

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Listen To SPC On WGVU Morning Show With Shelley Irwin

Listen To SPC On WGVU Morning Show With Shelley Irwin.

On Thursday 10/24/13 John Pellegrini stopped by the WGVU FM studios for an interview with Shelley Irwin on the WGVU Morning Show to talk about Special Parents Confidential.

You can listen to the interview here. Either click the play button or click download to install it directly on your computer or Mp3 player.

Be sure to check out the WGVU Morning Show With Shelley Irwin for all kinds of great information on Grand Rapids and West Michigan.

Many thanks again to Shelley Irwin for inviting me to talk about the podcast!

7 Myths About Medication – From The Cleveland Clinic

7 Myths About Medication and The Facts Behind Them. From The Cleveland Clinic

Medications of any kind are always a difficult decision for not only parents of special needs children but all parents. So we are pleased to be able to share an article that has great common sense advice on taking medications from the Cleveland Clinic:

7 Myths About Medication – and The Facts Behind Them

This article is mostly about over-the-counter (OTC) medications and information for adults, but much of the information applies to prescription medications and children taking medications as well.

We would add one more bit of advice that we have been given from our own pediatrician as well as other people we know in the medical profession: When giving any kind of OTC medication to a child, make sure you use your child’s weight for the dosage, rather than their age. Why? Body mass has much more of an effect on how you absorb medication than your age, and to a far greater degree with children. Some kids don’t grow as quickly as others and can weigh much less than the average for kids their age, which means for those kids a dose measured to the amount for their age would actually be too much.

Always get your medical information from reliable sources, like the Cleveland Clinic. Other good sources are The American Academy of Pediatrics, The Mayo Clinic and Web MD. You can also find links to excellent information from reliable sources on our Helpful Links page.

Avoid the myths about medication and always follow your doctor’s advice.

We’re Back – With A Request

We’re Back With A Request.

Hello!

We’ve had a short hiatus to attend to last minute end of summer trips, the usual back-to-school necessities, and other family needs. We’ll be posting a new podcast episode soon and start doing more interviews in the coming weeks.

We also have a request for you.

In a couple of previous episodes we’ve discussed whether charter schools are a viable option for education and whether or not charter schools are able or willing to adopt special education standards and practices for our special needs children. Many experts have debated this issue but there is one group that we’ve noticed who have not been heard from: parents.

Do you have a child with special needs who is enrolled in a charter school?  If so, we want to hear from you! We’d like to interview a few parents about their experiences with special education in charter schools, good or bad or whatever.  You’ll be able to keep your personal information private and even remain anonymous if you prefer. Our goal is to get feedback from parents as to whether or not charter schools are meeting the needs of their special needs children and if they are indeed a viable option for educating special needs kids.

If you’re interested in talking to us, or if you just want to email us some comments that we can use in an upcoming episode, please use the form on our Contact Us page and let us know how to contact you. We do not share our email list with anyone so your information will be kept private. Thanks for helping and hope to hear from you soon!

PS- if you do not have special needs children in charter schools but know someone who does, please forward this blog post to them, or use the Social Media sharing buttons below to help get out the word. Thanks for your support!

Important Legislation Update: H. R. 5.

Important Legislation Update: H. R. 5.

We received an email from the National Center for Learning Disabilities requesting immediate action on a bill that’s coming up in the House of Representatives. This is an urgent and important issue for every parent of a special needs child to act on.

The House is scheduled to vote in the next day or two on a ‘reform’ bill (H. R. 5.) to the Elementary and Secondary Education Act (ESEA), known as ‘No Child Left Behind’. While the ESEA needs reform, this new bill, H. R. 5. makes the act even worse because it removes all the accountability provisions in ESEA and allows students, as early as third grade, who need extra support to instead be removed from the high school diploma track and not receive a regular diploma. Can you imagine a child at age 8 or 9 being told that they will not be allowed to graduate with a high school diploma based on their current skills in third grade? That’s what might happen if H. R. 5. is allowed to pass.

Please follow this link to the page on why the NCLD opposes H. R. 5 for more information. At the bottom of the page there is a link to a form that makes it easy for you to quickly email your Congressional representative to tell them to vote no on H. R. 5.

Please act today, Wednesday 7/17/13, because the vote on H. R. 5. could come as quickly as tomorrow 7/18/13. Then share this page with everyone you know on social media. You can use the quick share buttons right below this article to easily make this happen.

Thanks for your help!

A Look Inside Children’s Minds – New Study from UI.

A very informative and interesting study is being done at the University of Iowa that shows how 3 and 4 year old children retain what they see around them.

Using an older technology that isn’t as invasive or difficult as an MRI, the researchers have been able to monitor how a child’s brain functions when memorizing. The researchers can now see neurological activity and brain development in children.

From the article: “The research is important, because visual working memory performance has been linked to a variety of childhood disorders, including attention-deficit/hyperactivity disorder (ADHD), autism, developmental coordination disorder as well as affecting children born prematurely. The goal is to use the new brain imaging technique to detect these disorders before they manifest themselves in children’s behavior later on.”

This study is helping to emphasize the importance of early intervention.

Read the full article here: Iowa Now – A Look Inside Children’s Minds

To easily share this article with your friends, click one of the ‘share’ buttons below.

Updates For June and July

Updates For June and July.

Time goes by quickly when the kids are home instead of being in school. But we wanted to post some updates about what we have coming up in the remaining days of June and in July. We have two podcast episodes recorded and we’ll get them posted in the next couple of weeks.

The next episode, SPC number 11, which we hope to have online very soon, features an interview with the Reverend Mathew Cockrum and we delve into ways in which we can help our special needs children get the best experiences in our places of worship, as well as how to work with ‘Sunday school’ or religious class staff so that our kids can have positive experiences. We also discuss ways to reconcile that sometimes certain religious beliefs can be in conflict with medical or scientific study, and that it is possible to accept both viewpoints, and many other great ideas.

SPC episode number 12, which will be ready after that, is all about education funding. We talk with Elizabeth Welch-Lykins who is an elected official in her local school board, a member of her school district’s legislative committee, and a lawyer. She has experienced the budget crisis in our schools first-hand through having to negotiate cuts in staff and services and she talks in detail about how school districts have had so much trouble and the real reasons why so many of our school districts are in trouble. She also details how budget cuts to public schools are definitely hurting special education programs and the dangers of not paying enough attention to who we vote for in elections.

We have more great interviews planned throughout the summer and into the next school year, so please keep checking back!  Better yet, sign up to get an email subscription to our podcasts so you’ll be notified every time we post something new. Just look over to the right column on our home page and enter your email address where it says “Get Podcast Notifications Via Email”. You’ll get automatic updates and we promise we will never give out your email address to anyone else.

Thanks for your support and don’t forget to help spread the word about us!

 

How To Know When Someone Is In Trouble When Swimming

How To Know When Someone Is In Trouble When Swimming.

Article: How To Know When Someone Is In Trouble In The Water

Thanks to Slate.com for this well-written article about safety in the water. Drowning victims don’t look like they’re drowning. With summertime swimming activity increasing, and since special needs children sometimes need extra help in the water, it’s important to know how to spot someone who is in trouble. Especially if you’re paying extra attention to your special needs child but you have other children in the water as well.

Read the article and learn the signs. Drowning victims DO NOT look like drowning victims! They almost never splash wildly or call for help. Most people don’t realize someone is in trouble until it’s too late.  Learn about drowning and water safety. Please be sure to share this article with family and friends.

Have a great and safe summer!  

How To Know When Someone Is In Trouble In The Water

Special Parents Confidential 08 Social Issues In School

Social Issues In School

When we talk about issues that can cause anxiety for parents of special needs kids,  dealing with social situations in school and elsewhere is probably right at the top of the list.  Will our children be accepted or will they be teased? Will  our kids be able to handle the day to day interactions in the class room, in the cafeteria, or on the playground? What about bullying? And what are we supposed to do when our kids experience problems with these situations?

For many schools the person who can help guide our kids through their day in school is the social worker. They’re also the person who parents can talk to for help with making sure their special needs child can fit into the various social situations and can offer advice that parents can use to reinforce the school’s expectations at home.

Our guest on this episode of Special Parents Confidential is Chris Kenward, an elementary school social worker who has many years of experience dealing with both special needs students and general education students.  Many experts agree, the vast majority of social problems begin early in elementary school so the sooner a child with special needs can get help in dealing with social issues, the better their progress will be throughout their life. The information Chris shares here is going to be vital for every parent of a special needs child, as well as for teachers, special education experts, care givers, and anyone who has a relationship with a special needs kid.

Links Mentioned In The Podcast: 

Shut Up About Your Perfect Kid  The website from the authors of the book.

Shut Up About Your Perfect Kid link to the book’s listing for sale on Amazon

Driven Story – Jon Singer – This is the website of the author of the book, “The Special Needs Parent Handbook”, which you can find on this page.

Views From Our Shoes – The website of the Sibling Support Project, where you can see stories from the book and order a copy.

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Upcoming Episodes For May

Upcoming Episodes For May:

We have some great guests scheduled for interviews in the next couple of weeks! Among them an elementary school social worker who will talk about acceptance, dealing with peers, preventing bullying, and helping our special needs children navigate the social structures of school.

We’re also going to talk with a Professor of Special Education – the teacher who teaches the teachers. We’ll discuss the ins and outs of special education from the perspective of the teachers and how parents can work effectively with their child’s teachers to make sure our kids are getting the best help available.

May is Better Hearing Month so we’re also going to talk with the mother of a deaf child who has cochlear implants, and is a board member of the Hearing Loss Association of America (Grand Rapids chapter). She’ll talk about the cochlear implant process, the modes of hearing, advocating for hearing loss children in school, support programs available for parents with hearing impaired children, and how to help parents find the right choices for treating hearing loss.

Keep checking back with us and be sure to sign up for our email alerts, which will notify you immediately when we post something new! Don’t forget to subscribe to our podcast on iTunes (its FREE!), and please consider writing a review of our shows on iTunes to help us spread the word!  Thanks so much for all your support!

Special Note: To receive email notifications of new posts and podcast episodes, type your email address in the space under “Subscribe To Blog Via Email” – on the right hand side of this page. That way every time we post a new episode or any news updates, you’ll get an immediate email notification. If you only register to make comments on our posts, you won’t get our email newsletter. Thanks!

Autism Is Not A Disability

Autism Is Not A Disability Article From The Baltimore Sun, by John P. Hussman.

Our friend (and first episode guest) Carol Lippert, shared this very interesting article that was published in the Baltimore Sun on April 10th, and written by a parent of a 19 year old boy with autism.

The article has some eye-opening perspectives for people about what a ‘disability’ really means. It’s definitely worth sharing with your friends and family, especially those who may not fully understand what autism means.

For that matter, you could apply the same perspective of this article toward virtually every other disability that people may have.

Autism Is Not A Disability, by John P. Hussman, published in the Baltimore Sun, April 10th, 2013.