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in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades.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 

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. 
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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.
Thanks for your support!

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.

In October of 2016 a study was published by the American Academy of Pediatrics that showed that greater than 84 percent of parents who participated in the study made some kind of error when measuring a liquid dose of medicine, with 68 percent of those errors being an overdose, and twenty percent of the errors being double the amount of medication that was prescribed. 

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

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

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

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.

be nice campaign – Revisiting Special Parents Confidential 53

Bullying and social problems in school are a continuing problem. While improvements have been made in how some school districts handle these issues, the problem is still unaddressed in many cities, towns, and states. So we’re reposting SPC Episode 53, in which we learned about the ‘be nice’ campaign.

be nice. 

A new program called the ‘be nice’ campaign has been started in West Michigan to help end bullying. One of the hardest issues to deal with for parents of special needs kids – as well as parents of any child – is bullying in schools and online. What do you do if your child is the victim of bullying? For that matter, what do you do if you discover your child is bullying other children?How far does bullying affect a child? What kinds of impact does this have on a child’s mental health? 

Learn About Mental Health.

Did you know that problems with bullying are the leading cause of suicide in children and teenagers? Bullying can also cause issues of depression, drug abuse, and other mental health problems that can affect people for their entire lives.

In this episode we’re going to talk to an expert in the subject of bullying. Christy Buck is the executive director of the Mental Health Foundation of West Michigan, and they have a new program that offers a solution. It’s called the ‘be nice’ campaign and it’s designed to to help kids, families, schools, and communities work to understand and end bullying. We’ll also learn about mental illnesses, how to recognize when problems escalate to thoughts of suicide and what to do in these situations.

We also talk about the common myths and stigmas associated with bullying, depression, and mental health issues that can cause problems for kids as well as adults. For example, a person doesn’t need to ‘bottom out’ before they should get help. We discuss ways to overcome these myths and stigmas.  You’ll also learn how the ‘be nice’ campaign can be used by your school or other organizations.

Links Mentioned in the Podcast.

be nice. campaign official website

The Mental Health Foundation of West Michigan 

National Suicide Prevention Lifeline (website)

National Suicide Prevention Hotline: 1-800-273-8255.

Reminder

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Access Now – Worldwide Accessibility Map

Access Now – Worldwide Accessibility Map.

Some times you come across an idea that’s so clever, you wonder why no one thought of it before. Access Now is just such an idea. Maayan Ziv, a young woman who has Muscular Dystrophy, created this app to help people with disabilities pin-point accessibility in public buildings around the world. Such a simple idea that can help a lot of people.

Crowdsourcing Accessibility Information.

Anyone can download Access Now for free and help contribute to the map. Using MapMe technology, you can pin any location around the world as either accessible, partially accessible, patio access only, or not accessible. Also, if a building is not accessible, the App helps you tweet this information to start the process to make a change to the accessibility of that location. Check out the currently pinned locations on the Access Now Map.

If You Can’t Enter…

People sometimes forget that getting into a building or business or even a home can be a real challenge for a person with a disability.  Wheelchairs, crutches, walkers, even people who use canes can have difficulties with accessibility, and sometimes building management or owners, are completely oblivious to the issues. This new App allows anyone a chance to do something about the issue, for free.

34 Countries And Growing

As of this posting, Access Now has pin-pointed over 22,000 locations in 34 Countries – and they’re just getting started. Being able to know ahead of time how easy or hard it will be for someone to gain access to a public building is extremely important. Access Now is the app that can help make the kind of change in accessibility that’s been needed for a long time. If you or someone you know needs this information, we encourage you to check it out and share it with everyone you know on social media.

Access Now Link 

Michigan Supreme Court Justice Richard Bernstein – SPC Episode 30

Michigan Supreme Court Justice Richard Bernstein

We’ve decided to start off the new year by reposting what I think is one of the most inspiring interviews I’ve done. Michigan Supreme Court Justice Richard Bernstein.

Blind Justice

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

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

Special Education Advocate

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

Improving, Not Cutting, Special Education Support.

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

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

Links To Follow:

Richard Bernstein Profile On Michigan Courts Page

Justice Richard Bernstein Profile In Wikipedia

Justice Richard Bernstein Facebook Page

Profile Article on Justice Richard Bernstein In The Detroit News

 

Deafness and Hearing Impairment – Revisiting SPC Episode 09

Deafness and Hearing Impairment.

Deafness and Hearing Impairment are now very well understood, and once diagnosed, can be successfully managed. Everyone at some point in their lives experiences some form of hearing loss, either from their environment or due to advanced age. However many children are born every year with deafness or hearing impairment.

Technology Improvements.

Although many therapies and technologies exist to help correct deafness and hearing impairment, the same questions and issues still come up for parents of deaf and hearing impaired children as for all parents of special needs children: communication, comprehension, help in school, social acceptance, and so on. And what organizations exist that can help parents get the information that’s best suited for their children and their particular needs?

A Parent Who’s Been There.

Our guest on this episode of Special Parents Confidential, Julie Wiseman, has been through a lot of these issues. Her daughter, Kendall, was diagnosed at birth with deafness. Juli shares Kendall’s story and her own struggles with finding help, getting the right information, and many other issues that she and Kendall have faced.

Links Mentioned In This Episode: 

New – Reviews.Com: The Best Hearing Aids of 2017 – a comprehensive review of the best over-the-counter hearing aids that are available right now.

Hearing Loss Association of America  – The Nation’s Voice For People With Hearing Loss.

Listen Up – Specializing in information for the deaf and hard of hearing, and especially geared to the needs of hearing impaired children and their families. Note: this website hasn’t been updated since 2010, but still has some valuable information.

Hands & Voices – Resource website for everyone.

Guide By Your Side – This is the link to the Hands & Voices national site for finding Guide By Your Side in every state.

Gallaudet University – The premier institution of learning, teaching and research for deaf and hard-of-hearing students.

John Tracy Clinic Los Angeles – Free help for parents of deaf and hearing impaired children no matter where they live.

Alexander Graham Bell Association – Support and information for parents of children with deafness or hearing impairment.

Cochlear Implant Manufacturers (and their associations):

Advanced Bionics 

Cochlear America 

Med-El