Tag Archives: Doctors

Special Parents Confidential 66 Mental Health America

Mental Health America.

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

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

Mental Health Is Physical Health.

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

Online Screening

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

Links Mentioned In This Episode.

MENTAL HEALTH AMERICA – The main website for MHA.

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

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

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Special Parents Confidential 64 5p Syndrome aka Cri du Chat

5p Syndrome aka Cri du Chat.

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

Defying Expectations.

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

Loving You Big

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

Links mentioned in the podcast:

Leah’s 3 favorite posts from her blog:

The Irony of Language.

Yes My Hands Are Full.

Welcome To The World, Baby Girl.

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

Resources:

5p Minus Society.

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

Reminder.

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

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

Thanks for your support!

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Special Parents Confidential Episode 62 Lori’s Voice

Lori’s Voice.

We’re introducing you to Lori and Dave Hastings, and their organization, Lori’s Voice. As any parent of a special needs child can tell you, money is one of the biggest challenges. It seems that everything involving your child requires large amounts of money. Medical treatments, therapies, additional equipment, travel expenses, the list can seem endless. The real problem is medical insurance doesn’t always pay for much of these expenses.

Financial Help In Difficult Times.

Lori’s Voice is a new kind of organization whose sole purpose is to provide funding for those expenses. They get donations and sponsor fundraisers to raise money so that they can help families pay for whatever they need. From their website: “The Purpose of Lori’s Voice is to Provide Equipment, Educational Services, and Medical Assistance to Children With Neuromuscular, Degenerative Diseases, and Mobility Issues.”

They’ve Never Done Anything Like It Before.

Lori and Dave Hastings never ran any kind of a foundation or charity organization before. Yet, they didn’t let that keep them from trying. By founding Lori’s Voice, they’ve been able to help dozens of families. Lori talks about her very personal motivation for getting involved in this work, and how others can start similar organizations. You’ll also learn how you can donate and help. Although Lori’s Voice is located in, and focuses primarily on West Michigan, others can make it happen anywhere.

Links Mentioned In The Podcast

Lori’s Voice Website

Lori’s Voice Facebook Page

Lori’s Voice Twitter Feed

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Special Parents Confidential 61 Ehlers-Danlos Syndrome

Ehlers-Danlos Syndromes.

“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”

The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.

Invisible Special Needs.

Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.

One Family’s EDS Story.

For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school.

To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler. There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.

We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly.

Links Mentioned In The Podcast

The Ehlers-Danlos Society – Excellent website for information and support.

Special Like Me… Madison the Great. The book written about Maddie and her life with EDS.

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Special Parents Confidential 59 Parent Stories 03

Parent Stories 03

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

Every Kind of Special Need

These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get the best they could and their kids are either on their way toward independence or already there.

The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences.

Welcome Jenny Moo

In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.

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Helpful Links:

Cerebral Palsy Guide – U.S. based online support group and advocacy site.

Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Epilepsy Foundation – U.S. based online information and resource guide website.

Epilepsy Information Page – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Head Cooling May Help Babies With Brain Damage – Article from WebMD.

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Special Parents Confidential Episode 58 Children’s Healing Center

Children’s Healing Center

Every so often you run across an idea that is so perfect, you find yourself wondering why it hadn’t been done before. Such is the case with The Children’s Healing Center, a new play facility in Grand Rapids, MI.

All Kids Want To Play

We all know the importance that play time and activities has for social development. We can talk about statistics and studies on the subject, but as parents we just know kids like to play with each other. But when a child has a disease or a disorder that compromises their immune systems, social activities usually wind up being left out.

Safe Play Areas For Kids With Immune Deficiencies

Now a new concept has come about here in Grand Rapids, Michigan where I live that is making a major difference. The Children’s Healing Center is a special play and social activity center that is completely germ free. It allows kids with cancers, blood diseases, or any other disorders that cause immune deficiencies to still get out and have a chance to play and socialize with other kids who have similar problems.

They offer fun programs and activities in technology, art and learning, fitness, and exploratory play in a seven thousand square foot facility that is as germ free as possible.

Joining me on this episode of Special Parents Confidential is Amanda Winn, who is the Founder and the Executive Chair of the Children’s Healing Center. We talk about her background and her very personal reason for starting the Children’s Healing Center, as well as what the center offers for kids and families.

Connect With Special Parents Confidential!

Did you know the best way you can keep in touch with me and comment about episodes and other issues you’re interested in is on the Special Parents Confidential Facebook page? Use the Facebook button below this post to connect with us and share Special Parents Confidential with everyone you know on social media.

Links Mentioned In This Episode:

Children’s Healing Center Home Page

Amanda Winn Biography

Children’s Healing Center Facebook Page

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Special Parents Confidential Episode 57 Parent Stories 02

Special Parents Confidential 57 Parent Stories 02

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

We Really Are All In This Together.

Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get the best they could and their kids are either on their way toward independence or already there.

We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.

Welcome Sandy Carlson

In this episode we hear from Sandy Carlson. She and her husband Steve have three boys, the oldest of which is Harrison, who has autism. Harrison is now in his 20s and has a full time job, but as you’ll hear from Sandy, they didn’t really know anything about what to expect for his future. Not much was known about the future for children with autism, even just 20 years ago, and the improvements that have come since then have made a real difference.

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Special Parents Confidential Episode 55 Collaborative & Proactive Solutions

Collaborative & Proactive Solutions.

In this episode we’re taking a look at Collaborative & Proactive Solutions, which was developed by Dr. Ross Greene and his Foundation, Lives In The Balance. Child behavior problems are always a concern for parents, and sometimes it can seem for parents of special needs kids that the behavior concern is a constant problem.

Punishments and Discipline Don’t Work.

For as long as anyone can remember, the basic correction method for misbehavior was centered on punishment and discipline. However, that model often fails miserably, and we know this is true, because it’s evidenced by the fact that we have so many prisons full of the results of that failure. So why do we keep enforcing a system that doesn’t work?

Treating Causes Instead of Symptoms.

Over the past few decades a new model of behavior, called Collaborative and Proactive Solutions, or CPS, has been developed with a much greater rate of success. This model was founded by Dr. Ross Greene, who, while on the faculty of Harvard Medical School, began to take a different look at kids with behavior problems.

Collaborative & Proactive Solutions.

From his organization’s website, Lives In The Balance: The model is based on the premise that challenging behavior occurs when the expectations being placed on a kid exceed the kid’s capacity to respond adaptively, and that some kids are lacking the skills to handle certain demands and expectations. So the emphasis of the model isn’t on kids’ challenging behavior, which is just the manner in which they are expressing the fact that there are expectations they’re having difficulty meeting. Nor does the model focus on psychiatric diagnoses, which are simply categories of challenging behaviors. Rather, the model focuses on identifying the skills the kid is lacking and the expectations he or she is having difficulty meeting.

To tell us more about how the Collaborative and Proactive Solutions model works and why it works, we’re being joined by Kim Hopkins who is the Director of Outreach for the official Collaborative and Proactive Solutions Foundation, Lives In The Balance.

Links Mentioned In The Episode

Lives In The Balance – the Official Foundation of Dr. Ross Greene

Lives In The Balance Facebook Groups

Lives In The Balance Radio Programs

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Down Syndrome – Revisiting Special Parents Confidential Episode 34

Down Syndrome.

Recently Gerber Foods announced their first ever “Gerber Baby” who has Down Syndrome. In honor of this great milestone, we are taking a look back at Special Parents Confidential Episode 34.

Down Syndrome. Myths and Facts.

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

“What We Know” Is Likely Wrong

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

Factual Information.

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

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

Links to Websites mentioned in the podcast:

National Down Syndrome Society

National Down Syndrome Congress

Down Syndrome Affiliates in Action

Global Down Syndrome Foundation

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Vaccine Safety – Revisiting Special Parents Confidential 22

Vaccine Safety.

In recent months there’s been a resurgence of concerns about vaccine safety. Claims about this year’s flu shot being ‘not as effective’, has given the anti-vax movement new attention. But, as we noted in 2015 when we posted this episode, those claims are nonsense. So here’s a revisit of SPC episode 22, in which we interview a real expert on vaccine safety.

What Is The Truth?

In the last 20 years or so we have seen an increase in popularity of an anti-vaccine movement which is based on some very disturbing claims about vaccine safety. Primarily among them being that the MMR vaccine, which stands for Measles, Mumps, and Rubella, causes autism. Others claim all manner of health problems can come from vaccinations and that we, as a society, should stop vaccinating our children in any way.

But are those claims valid? Do they have any real scientific proof? For that matter, how safe are vaccines and immunizations? Who makes them? How are they tested? What kind of research, safeguards, and oversight is done before a vaccine is allowed to be used in public? Are they just thrown together in careless disregard by big pharma corporations for big profits, as the anti-vaccine movement claims, or is there a much more scientific and careful approach with regulations and oversight from medical groups, the CDC, and the FDA?

Hear From A Real Expert.

Our guest on this episode of Special Parents Confidential is going to answer a lot of those questions. Mary Wisinski, RN BSN, is the Supervisor of the Immunization Program at the Kent County Health Department, located in Grand Rapids, Michigan, and she has graciously agreed to this interview to provide credible and accurate information. And what she has to say is very important for every parent to hear and understand.

More importantly, Mary answers the one question that the anti-vaccine people have never dared to address: Are there documented cases of children who were not vaccinated, yet still developed autism? Listen to this episode to hear the answer for yourself.

Valid Links.

Mary has also supplied a PDF with links to websites that contain accurate, proven, peer-reviewed research that prove the safety and importance of vaccines and immunizations. There is also links to books you can purchase for more information, a toll free number to the Center for Disease Control where you can speak to CDC staff on vaccine safety 24/7, as well as a DVD on vaccine safety. The website links are listed below and the PDF form link is below them:

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

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.
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Three SPC Episodes About Child Illnesses.

Child Illnesses.

The 2017-2018 Cold and Flu season is well underway. News headlines from all over claim this year’s flu is the worst yet. For any parent, child illnesses can be very traumatic. Dealing with sick kids while trying to juggle your career schedule can be a nightmare in and of itself.

The Doctor’s Advice

Last year we posted three different episode interviews with our friend Dr. Patricia Schultz, an emergency medicine trained physician. After finishing residency and practicing in the ER for a few years, she found her real passion was utilizing her medical training to help patients and families get the best medical care possible. She also taught medical students how to perform to the best of their abilities while having the utmost empathy, respect and compassion for their patients. Dr. Schultz is currently a healthcare consultant in the private sector, and is working on writing her second book. She is also personal friend of our family.

Click on the links below to access each episode.

Special Parents Confidential Episode 48 Colds and The Flu and Your Child

It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?

Why Do Colds And The Flu Affect Kids Differently Than Adults?

In this episode of Special Parents Confidential, Dr. Patricia Schultz provides some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.

Special Parents Confidential Episode 40 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 concern that’s not just for parents of special needs kids, but for all parents. The simple fact of the matter is if you are the parent of a child who has ever been prescribed a medication or has taken over the counter medications for any reason, and if you have used any kind of liquid medication, you have probably made some dosing errors whether you realize it or not.

Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment.

Preventing Child Medication Errors: How Accurate Are Your Measuring Tools?

The study looked at several medicine measuring tools including the small plastic measuring cups that are commonly included with over-the-counter medications, liquid measuring syringes (not the kind used in vaccinations), kitchen measuring spoons, and tableware. The degree in variations of accuracy between all these measuring tools was astonishing and alarming.

In this episode, Dr Schultz talks about the results of the study, some of the most common mistakes parents make when using measuring tools, and the dangers of incorrect dosages of medications for kids. She discusses which of the measuring tools tested was the most accurate, how to check with your doctor and your pharmacist to make sure you’re measuring accurately, and whether or not homeopathic medicines are really safer than pharmaceutical medications.

Special Parents Confidential Episode 38 All About ER

Finally, we have this episode where we discuss trips to the ER, which can happen often, if you’re a parent of a special needs child. Dr. Schultz talks about how parents can lessen children’s fears of the ER and the doctor’s office in general. What parents can do to help doctors and staff members understand the unique challenges our kids face. How parents can best advocate for their kids. How to make sure that in an over-worked environment like a busy ER, that the staff is really focusing on our children.

Dr. Schultz also discusses what parents should do when conflicts arise with the medical staff, which unfortunately can happen. The dangers of trying to diagnose our kid’s medical problems through internet searches. Finally, why it’s important to follow up an ER visit with an appointment to your family doctor or pediatrician.

Disclaimer:

Dr. Schultz’ contributions in all of these episodes are for informational purposes only. Always talk your family physician or pediatrician before considering any kind of medical treatment, therapy, or medication.

A Sibling’s Perspective – Revisiting SPC Episode 31

A Sibling’s Perspective.

The Holidays always mean family visits, and with that in mind, we thought our episode on a sibling’s perspective would be a good one to repost. This episode is from October of 2015, when we interviewed Aubrey Boerma, who grew up with an older brother who has Autism.

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

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

There Are Answers.

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

Links To Websites Mentioned In This Podcast:

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

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

The 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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Learn The Signs – Act Early – Revisiting SPC Episode 37

Learn The Signs – Act Early

Last spring we talked to the Center for Disease Control and Prevention about their Learn The Signs, Act Early, program to help parents better understand if their child has Autism.

Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.

Learn The Signs. Act Early. From The CDC.

To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early. From the website:

“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”

In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.

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.
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Colds and the Flu – Revisiting SPC Episode 48

Why Do Colds And The Flu Affect Kids Differently Than Adults?

For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.

Always Call Your Doctor First.

You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults. As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.

Links Mentioned In This Podcast.

The Oral Rehydration Solution from The World Health Organization

The Common Cold – What Parents Need To Know. From the American Academy of Pediatrics.

The Flu – Healthy Children from The American Academy of Pediatrics.

Surviving The Stomach Bug – American Academy of Pediatrics.

Kids Health – Vomiting

Kids Health – Diarrhea

Support Special Parents Confidential

If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!

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Special Parents Confidential 52 Ponseti Method of Clubfoot Treatment

Ponseti Method of Clubfoot Treatment

Clubfoot, or talipes equinovarus, is a treatable birth defect that affects approximately 150,000-200,000 children each year. When clubfoot occurs the foot is twisted inward and down. For decades the standard treatment for clubfoot consisted of performing radical surgery on the tendons and bones of an infant’s feet.

In the mid 1940s, Dr. Ignacio Ponseti, an orthopedic surgeon at the University of Iowa, began reviewing the results of the surgical treatments of clubfoot that were commonly used at the time. His findings were not encouraging. He discovered that, in adulthood, former surgical patients often experienced foot stiffness, pain, arthritis, and limited mobility, and in many cases required additional surgery.

The Ponseti Method.

By studying the anatomy and functions of a baby’s foot, Dr. Ponseti developed a non-surgical method to correct clubfoot in infants through gentle manipulation of the feet followed by the application of plaster casts. In 1948, Dr. Ponseti began using what has now become known as the Ponseti Method of clubfoot treatment.

Our guest for this episode has a great deal of experience with the Ponseti Method of clubfoot treatment. Dr. Jose Morcuende is a professor of orthopedic surgeries at the Ponseti Clubfoot Clinic at the University of Iowa Children’s Hospitals.

Dr. Morcuende trained directly with Dr. Ponseti and has helped to promote the Ponseti Method around the world through the Ponseti International Association, of which he is the President at CEO. He talks about working with Dr. Ponseti, how clubfoot affects children born with it, and the success rate of the Ponseti Method. Dr. Morcuende also talks about the mission of the Ponseti International Association, and the importance of finding a doctor who has been fully trained in the Ponseti Method.

Links Mentioned In This Podcast.

Clubfoot – University of Iowa Stead Family Children’s Hospital

Ponseti International Association

To Parents of Children Born With Clubfeet – Article written for parents by the late Dr. Ponseti explaining his method of treatment.

Glossary of Terms From Ponseti International Association – Glossary of some of the common medical terms used by doctors when treating clubfoot.

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Special Parents Confidential 50 ADHD Nation Alan Schwarz

ADHD Nation Author Alan Schwarz.

ADHD Nation, Children, Doctors, Big Pharma, and the making of an American Epidemic, is a new book by New York Times correspondent Alan Schwarz, that is putting a lot of focus on ADHD and the way it’s diagnosed and treated in the United States. Alan Schwarz is the Pulitzer Prize nominated investigative reporter who wrote more than 100 articles that helped expose the serious problems of concussions in football players of all ages. His work lead to movies and documentaries about the seriousness of concussions and to the NFL finally admitting the problem and making changes in how they deal with the problems.

Since then Mr. Schwarz has begun investigating ADHD diagnosis and medications, writing a new series of articles on the subject that lead to the publication of ADHD Nation.

Excessive Diagnosis?

Mr. Schwarz has done an intense amount of research in the hard statistical evidence that shows an often higher number of children and adults are being diagnosed with ADHD than what the established rate of diagnosis is supposed to be. In fact, it’s nearly three times the established number, which means millions of people more than expected are being diagnosed, or often misdiagnosed. He also profiles a number of the major names involved in the diagnosis and treatment of ADHD all the way back nearly 200 years when the symptoms we now associate with ADHD were first recorded. Along the way we meet Dr. Keith Conners, who has been called “the father of ADHD”, and we learn his concerns about how his work has been misused.

A Fair Balance.

ADHD Nation is a very well balanced book, in that it doesn’t attempt to deny that ADHD is a valid medical condition. In fact the book opens with the statement, “AHDH is real.” Mr. Schwarz proves that in the correct circumstances ADHD medications work and are highly effective. But, as you’ll hear in this interview, far too many people, especially children, are being put on the medications when they clearly do not have ADHD and don’t need medications. This is an important book and you’ll learn how Mr. Schwarz researched the numbers and compiled the evidence that he presents in the book.

Links Mentioned In The Podcast.

ADHD Nation Official Website

Alan Schwarz at the New York Times

Alan Schwarz’ Profile on Wikipedia

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Special Parents Confidential 49 Parenting Concerns

Parenting Concerns.

Having a special needs child always causes tremendous parenting concerns and a lot of work. Many moments can be incredible, exhilarating, and full of amazing wonder. But it can also be extremely stressful. Dealing with schools, social situations, family situations… it can seem like everywhere you turn is another opportunity for more parenting concerns and stress. The other problem is that not everyone understands or even cares about these situations, so many parents can feel isolated in their worries and concerns.

Family Stress

So what can you do to help you deal with all these stresses and keep yourself from coming apart at the seams? Our guest on this episode has some great advice. Jean Holthaus is a licensed independent social worker with Pine Rest Christian Mental Health Services in Pella Iowa. She specializes in dealing with anxiety issues, parenting concerns and family issues, and working with special needs children. You’ll also find out about setting boundaries for special needs children, dealing with emotions including anger in children and adults, and how to deal with school anxiety issues. Jean also talks about great resources for parents to access that can help with numerous situations for schools, home, and social situations.

Links Mentioned in the Podcast

Jean Holthaus’ Page at Pine Rest

Office of Special Education Programs, US Department of Education

US Department of Education ED Publications

The American Academy of Children and Adolescent Psychiatry

Support Special Parents Confidential.

You can help us continue to produce this podcast. Please consider contributing to help continue this podcast. Use the Pay Pal link on our home page to contribute any amount you can. Also be sure to share this episode, and any episode you’ve found helpful with all your favorite social media sites. Use the buttons below to quickly access your favorite sites with our podcast. Thanks for your support!

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Special Parents Confidential 48 Colds And The Flu

Colds And The Flu.

Why Do Colds And The Flu Affect Kids Differently Than Adults?

Always Call Your Doctor First.

Links Mentioned In This Podcast.

The Oral Rehydration Solution from The World Health Organization

The Common Cold – What Parents Need To Know. From the American Academy of Pediatrics.

The Flu – Healthy Children from The American Academy of Pediatrics.

Surviving The Stomach Bug – American Academy of Pediatrics.

Kids Health – Vomiting

Kids Health – Diarrhea

Support Special Parents Confidential

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Special Parents Confidential 47 Nurtured Heart Approach

Nurtured Heart Approach.

What is the Nurtured Heart Approach and how can it help? For many kids with special needs the ability to concentrate, even to sit still in class, is challenging. We’ve given lots of names to these issues: Attention Deficit Disorder. Attention Deficit Hyperactive Disorder. Obsessive Compulsive Disorder. Oppositional Defiant Disorder, Difficult Kid, Problem Child. The list goes on… and if you think about it, it’s a very negative outlook on these children.

A Paradigm Shift.

Now there is a relatively new process of working with kids who have these issues that tries to do away with all that negativity. It’s called the Nurtured Heart Approach. It consists of a set of strategies that assists children in developing their self-regulation, and transforming the way children perceive themselves and the world around them. And it has created a huge amount of success by concentrating on positive behaviors instead of all the negative behavior.

For this episode we’re joined by Dr. William Rowell, a retired licensed Psychologist with Pine Rest Christian Mental Health Services of Grand Rapids Michigan who has spent the last years training parents, educators, foster parents, social workers, and law enforcement personnel in the Nurtured Heart Approach. He explains how the Nurtured Heart Approach works, why it’s more successful than other strategies, and how making a paradigm shift in your thinking will make all the difference for your special needs child.

Links Mentioned In This Episode.

The Children’s Success Foundation The website dedicated to the Nurtured Heart Approach and Howard Glasser, creator of NHA.

Children’s Success Foundation Practitioner’s List – Information on NHA certified trainers in America and around the world.

Dr. William Rowell’s Page at Pine Rest Christian Mental Health Services.

Dr. Rowell’s Email: william . rowell @ pine rest . org. – be sure to remove the spaces.

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 our very own 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 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.

Reminder

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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 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.

This Episode Is Part One.

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.

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?

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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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.

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.

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.

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.
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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.

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John Pellegrini

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.

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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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 31 A Sibling’s Perspective

A Sibling’s Perspective.

Links To Websites Mentioned In This Podcast:

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

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 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 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 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.

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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.

American Academy of Pediatrics Immunization Webpage

The Center for Disease Control Vaccine Website

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

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.

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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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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.

Mental Health America.

Mental Health Is Physical Health.

Online Screening

Links Mentioned In This Episode.

Reminder.

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5p Syndrome aka Cri du Chat.

Defying Expectations.

Links mentioned in the podcast:

Reminder.

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Lori’s Voice.

Financial Help In Difficult Times.

They’ve Never Done Anything Like It Before.

Links Mentioned In The Podcast

Connect With SPC On Facebook!

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Ehlers-Danlos Syndromes.

Invisible Special Needs.

One Family’s EDS Story.

Links Mentioned In The Podcast

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Parent Stories 03

Every Kind of Special Need

Welcome Jenny Moo

Connect With Us On Facebook!

Helpful Links:

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Children’s Healing Center

All Kids Want To Play

Safe Play Areas For Kids With Immune Deficiencies

Connect With Special Parents Confidential!

Links Mentioned In This Episode:

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Special Parents Confidential 57 Parent Stories 02

We Really Are All In This Together.

Welcome Sandy Carlson

Connect With Us On Facebook!

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Collaborative & Proactive Solutions.

Punishments and Discipline Don’t Work.

Treating Causes Instead of Symptoms.

Collaborative & Proactive Solutions.

Links Mentioned In The Episode

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Down Syndrome.

Down Syndrome. Myths and Facts.

“What We Know” Is Likely Wrong

Factual Information.

Links to Websites mentioned in the podcast:

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Vaccine Safety.

What Is The Truth?

Hear From A Real Expert.

Valid Links.

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Child Illnesses.

The Doctor’s Advice

Why Do Colds And The Flu Affect Kids Differently Than Adults?

Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment.

Preventing Child Medication Errors: How Accurate Are Your Measuring Tools?

Disclaimer:

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A Sibling’s Perspective.

There Are Answers.

Links To Websites Mentioned In This Podcast:

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