Mental Health is a subject that has taken center stage in large areas of our conversation. Everywhere you look in the media, people are talking about mental health. Certainly within the special needs community, the awareness of mental health for both people with special needs, and their caregivers, has become a major priority.
But where do the standards of care come from? How has the conversation changed over the years to get where were are now; that mental health is a major issue? And who is providing the oversight for how this condition is diagnosed and treated?
Mental Health Is Physical Health.
One of the major organizations for mental health awareness is Mental Heath America. Founded in 1909, MHA is the nation’s leading community-based non-profit dedicated to helping all Americans achieve mental well-being. MHA’s work is driven by a commitment to promoting prevention services for all. This includes early identification and intervention for those at risk, and integrated care and treatment for those who need it. They also work for policy standards and changes, with both local governments, and on the Federal level.
Online Screening
In this episode we talk to Theresa Nguyen, the Vice President of Policy and Programs with Mental Health America. She discusses the growing awareness of mental health issues, and some of the significant gains that have been made in diagnosis and treatments. For example, Theresa talks about MHA‘s new Online Screening Tools that can help you determine whether you are experiencing symptoms of a mental health condition. This offers many supports including DIY tools to help you get better.
MENTAL HEALTH AMERICA’S ONLINE SCREENING TOOLS – Their free, private, online screening tools. These can help you determine if you are experiencing symptoms of a mental health condition.
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Growing Roots is a new program in West Michigan that’s introducing therapeutic farming. We al know that getting your hands in the soil can help you relax. You get a feeling of accomplishment and it helps to relieve stress.The same thing holds true with caring for animals, whether it’s a pet or a farm animal of some kind.
Back To The Farm.
In the past few years more studies are showing that agriculture therapy and animal care therapy can offer tremendous help for people with physical and developmental disabilities. Growing Roots is all about taking these concepts to the next level.
Hands-On Therapy.
Here in West Michigan where we live, two women are trying to create a sustainable therapeutic farming program called Growing Roots. Jessica Roost and Sarah Baker are joining me on this episode to talk about how they’re getting their program started and their goal, which is to have a fully operational farm with a live-in residency program.
Accomplishment and Achievement.
Growing Roots is going to help provide a sense of achievement, accomplishment, and responsibility that will be a tremendous benefit.
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Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.
Defying Expectations.
But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.
Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.
Please help spread the word about Special Parents Confidential. Use the social media buttons located on this page to post our podcast to all of your favorite social media platforms.
A great way to get in touch with us and comment about episodes you’ve listen to is on our Facebook Page. Please “like” the page and tell us what you think. You can even suggest topics for upcoming episodes and ask questions about previous shows.
Special Parents Confidential is now available onSpotify! Just follow the link here to subscribe to our podcast for free.
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.
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“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”
The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.
Invisible Special Needs.
Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.
One Family’s EDS Story.
For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school.
To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler. There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.
We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly.
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
Every Kind of Special Need
These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences.
Welcome Jenny Moo
In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
Epilepsy Foundation– U.S. based online information and resource guide website.
Epilepsy Information Page– from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
We Really Are All In This Together.
Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.
Welcome Sandy Carlson
In this episode we hear from Sandy Carlson. She and her husband Steve have three boys, the oldest of which is Harrison, who has autism. Harrison is now in his 20s and has a full time job, but as you’ll hear from Sandy, they didn’t really know anything about what to expect for his future. Not much was known about the future for children with autism, even just 20 years ago, and the improvements that have come since then have made a real difference.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
The 2017-2018 Cold and Flu season is well underway. News headlines from all over claim this year’s flu is the worst yet. For any parent, child illnesses can be very traumatic. Dealing with sick kids while trying to juggle your career schedule can be a nightmare in and of itself.
The Doctor’s Advice
Last year we posted three different episode interviews with our friend Dr. Patricia Schultz, an emergency medicine trained physician. After finishing residency and practicing in the ER for a few years, she found her real passion was utilizing her medical training to help patients and families get the best medical care possible. She also taught medical students how to perform to the best of their abilities while having the utmost empathy, respect and compassion for their patients. Dr. Schultz is currently a healthcare consultant in the private sector, and is working on writing her second book. She is also personal friend of our family.
It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
In this episode of Special Parents Confidential, Dr. Patricia Schultz provides some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Have you ever checked your child’s medications to see if you’re giving them the right medicine? Of course you have. Have you ever checked your own ability to measure out the correct dose of medicine? Are you certain your measuring ability and the tools you’re using to measure the medications are accurate? Child Medication Errors are much more common than you think.
This is a concern that’s not just for parents of special needs kids, but for all parents. The simple fact of the matter is if you are the parent of a child who has ever been prescribed a medication or has taken over the counter medications for any reason, and if you have used any kind of liquid medication, you have probably made some dosing errors whether you realize it or not.
Liquid Medication Errors and Dosing Tools, a Randomized Controlled Experiment.
In October of 2016 a study was published by the American Academy of Pediatrics that showed that greater than 84 percent of parents who participated in the study made some kind of error when measuring a liquid dose of medicine, with 68 percent of those errors being an overdose, and twenty percent of the errors being double the amount of medication that was prescribed.
Preventing Child Medication Errors: How Accurate Are Your Measuring Tools?
The study looked at several medicine measuring tools including the small plastic measuring cups that are commonly included with over-the-counter medications, liquid measuring syringes (not the kind used in vaccinations), kitchen measuring spoons, and tableware. The degree in variations of accuracy between all these measuring tools was astonishing and alarming.
In this episode, Dr Schultz talks about the results of the study, some of the most common mistakes parents make when using measuring tools, and the dangers of incorrect dosages of medications for kids. She discusses which of the measuring tools tested was the most accurate, how to check with your doctor and your pharmacist to make sure you’re measuring accurately, and whether or not homeopathic medicines are really safer than pharmaceutical medications.
Finally, we have this episode where we discuss trips to the ER, which can happen often, if you’re a parent of a special needs child. Dr. Schultz talks about how parents can lessen children’s fears of the ER and the doctor’s office in general. What parents can do to help doctors and staff members understand the unique challenges our kids face. How parents can best advocate for their kids. How to make sure that in an over-worked environment like a busy ER, that the staff is really focusing on our children.
Dr. Schultz also discusses what parents should do when conflicts arise with the medical staff, which unfortunately can happen. The dangers of trying to diagnose our kid’s medical problems through internet searches. Finally, why it’s important to follow up an ER visit with an appointment to your family doctor or pediatrician.
Disclaimer:
Dr. Schultz’ contributions in all of these episodes are for informational purposes only. Always talk your family physician or pediatrician before considering any kind of medical treatment, therapy, or medication.
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!
The Holidays always mean family visits, and with that in mind, we thought our episode on a sibling’s perspective would be a good one to repost. This episode is from October of 2015, when we interviewed Aubrey Boerma, who grew up with an older brother who has Autism.
What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?
As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings.
There Are Answers.
In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.
Links To Websites Mentioned In This Podcast:
The Sibling Support Project–Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
The Holidays always mean family visits, and with that in mind, we thought the subject of Sibling Support would be a good one to repost. This is the first of two episodes on Sibling Support we did, back in July of 2015.
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
Communication Is Key
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
Groups That Can Help.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Last spring we talked to the Center for Disease Control and Prevention about their Learn The Signs, Act Early, program to help parents better understand if their child has Autism.
Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.
Learn The Signs. Act Early. From The CDC.
To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early. From the website:
“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”
In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.
Amazing Me – It’s Busy Being 3!Parents, this book for children ages 2-4 will show you what to look for as your child grows and develops. Whether you read this story to your child online or have a hard copy of the book, ask your child to find the koala bears. Each page with a koala bear also has a star and milestone at the bottom just for you. See if your 3-year-old is able to do some of the same things as Joey.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumblr, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those services. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
In January of 2014 we posted episode 15 of Special Parents Confidential, in which we learned about Applied Behavior Analysis ABA. Our guest was Conny Raaymakers, who is a board certified behavior analyst. Her interview has become our most downloaded and listened to episode, with nearly double the listens of any other episode we’ve done. It’s even been cited in a text book on applied behavior analysis.
What Is ABA?
Applied Behavior Analysis or ABA is a term parents of special needs children hear a lot in schools, doctors offices, therapy centers, and just about anywhere our kids interact with people. Studies have shown that ABA can be used to help children as early as 18 months learn to cope with everything from social settings to the educational environment. ABA has been proven to be successful especially for children with autism and can be used to help kids with other disabilities and disorders.
New Contact Information.
However, since that interview took place, Conny has had some changes in her career. She is now the Director of ABA services at Developmental Enhancement Behavioral Health. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist. She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.
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, 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, Google Play, Stitcher, TuneIN, Poddirectory, Blog Talk Radio, and other podcast directories 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!
A few days ago I came across the above video on Facebook called Amazing Things Happen, It does an incredible job of explaining Autism in a way that kids could understand.
Amazing Things Happen, since it was posted online, has had over 5 million views. It’s been translated into 28 subtitled languages, and 10 fully dubbed versions. I wanted to know more about the person who created the video, Alex Amelines, and how he was able to create such a well-done piece.
“I worked in Editorial design for 5 years. Back in Colombia. Then I moved to the United Kingdom to do an animation course after which I ended up settling up in. Both in the animation field and in the UK.
“I now work as an independent animator and director, my animations have gone in all directions: television, exhibitions, installations, games, films, planes, etc. In 2012 I established Studio Tinto in an attempt to become rich and famous.
“I’ve achieved neither.”
This wasn’t quite all the information I was looking for, so I sent Alex a message. He replied that his preference was to not do a podcast interview because he was worried that his accent was a little to hard to understand. But he would be happy to explain the process of how he came up with the animation.
By the way – Alex mentions the term SENCO, which in the U.K. stands for Special Education Needs Coordinator.
The Amazing Things Happen Background Story.
“I must warn you that my story is not an exciting one and that I’d prefer the focus were on the animation rather than me or my family but I’ll try to tell you what drove me anyway:
“A few years ago, my son’s school organised an assembly to help explain autism to the children, which struck me as a wonderful idea. The talk was very interesting and the local expert who led it obviously knew her stuff but it was limited by a lack of clear, visual materials. The children got most excited at a slide of Lego toys and enjoyed a scene from the animated series Arthur, where Arthur meets a boy who doesn’t make eye contact and only wants to talk about trains.
“My immediate thought was, this could all be an animation – and might even retain the children’s interest better that way. I’ve always loved working on creative side projects to distract me from client work and thought this would be both fun and potentially useful for the school. Perhaps even a few more schools, locally. I had no big plans beyond that.
“I met with the school’s SENCO and told her my idea, which she as was excited as I was. I had to do a lot of research, a lot of books, a lot of TED talks, blogs, articles, etc. I met with the SENCO several times to discuss my progress. The hardest part was to condense the script into 5 minutes, as English is my second language, I’m not a trained writer and most importantly, because there is so much to say about autism! The spectrum is so unforgivingly vast it seemed impossible keep it all in, everything seemed so relevant. But I knew from experience that this could only work if it was short enough to be feasible to finish on my own and also to retain the attention of small children.
“My prerogatives were: keep it short, only positive words, keep the language simple.
“It took me the best part of a year to get to a point that I thought I can start animating. But before doing so I ran it past the SENCO and reached out to Prof. Tony Attwood, a leading expert on autism who was really generous with his time and knowledge. He checked the script and storyboards and made some adjustments to the language. So I felt I had a proper seal of approval, which cheered me on.
“As I moved on from writing to animation things got easier. I was in my element. I developed the characters, created the artwork, did some research for the look of the animation. The backgrounds and colours were inspired by old 1940s UPA animations, which I’ve always loved.
“For the music I asked London based musician Chris Harrington, he has always supported my animated projects with beautiful original compositions. The narrator is a Scottish actor called David Gant (Braveheart, Sherlock, Final Fantasy VII), who I’d met while working on the visual effects of feature film, The Fitzroy. He has a beautiful booming voice that is both authoritative and warm. The kind of voice that inspires trust. So I reached out and David kindly agreed to do it pro bono. Mike Avgeros also generously offered to let us use his recording studio for an hour on a weekend.
“We released Amazing Things Happen in time for autism awareness month, then something amazing really did happen. By the second day the film had been seen thousands of times. I was over the moon with that, but after two weeks it was 5 million. It was all very surreal and very moving, as I got many beautiful messages of thanks from parents, teachers and – most importantly to me – from people who themselves have autism. So it has been very rewarding, more than I had ever imagined.
“Right nowAmazing Things Happen has subtitles in 28 languages, it has been dubbed into 10 languages, apart from the French and German narrations, everything has been from contributions from people who’ve liked the project. And there are more foreign narrations coming, the former director for the Icelandic Autism Society has offered to do an Icelandic version, the Executive Director of OC Autism wants to do Vietnamese, Chinese, Korean, Tagalog and Hindu, there are offers to do Finnish, Norwegian, Portuguese, Arabic, Hebrew, Estonian, Japanese and Malay. And an animation studio in Bangladesh, who are connected with the Prime Minister’s daughter are recreating the animation with Asian themes.
“From the reaction it’s clear that there is an urgent need for this kind of material. I would also love to do more, so I am considering a crowd-funding campaign to develop a series in which children could tell their own story, describing their autism to us. Raising funds this way would mean I could work on this full time, rather than finding a spare hour here and there around my usual client work. There’s so much more to be said on the subject. And I figure that the only way to paint a portrait of something that has a million faces, is to paint as many pictures as possible!”
Additionally, Alex wrote the following to me in a separate email:
“In relation to how I visualised it, I think the fact that so many autistic people have felt it is an accurate depiction is sort of a fluke, I mean I did lots of research but I knew it wasn’t going to be accurate for everyone as the spectrum is so vast, so it felt like taking a gamble, I tried to be generic (too much detail in some parts, too little detail in others, too bright, too loud), while showing things that Neuro-Typical children can relate to, so they can put themselves in their shoes. Professor Tony Attwood came up with the idea of removing people’s faces to convey the fact that they can’t read people’s expressions, which I think is a great touch, even if it’s not obvious to people who see it, it is there.
“It helped me a lot that I am a visual person, for instance I can’t remember a phone number but I can remember the pattern my finger draws as it types. Even my mental associations are visual, when I was reading “The Reason I Jump” as part of my research at some point it evoked a scene from The Man of Steel, were Superman as a child starts discovered his powers (well I say discovered but it looked more like they ran him over, the scene is terrifying), suddenly he can hear everyone at the same time, see everything too clear, too bright, too much, that’s how I imagine sensory overload. Unfortunately autistic people don’t have superman’s ability to control this, there’s no filter or off button.”
My thanks toAlex Amelines for offering this explanation of his work.
Amazing Things Happen is something everyone should watch. I highly recommend you share this video with everyone you know!
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.
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.
What is the Nurtured Heart Approach and how can it help? For many kids with special needs the ability to concentrate, even to sit still in class, is challenging. We’ve given lots of names to these issues: Attention Deficit Disorder. Attention Deficit Hyperactive Disorder. Obsessive Compulsive Disorder. Oppositional Defiant Disorder, Difficult Kid, Problem Child. The list goes on… and if you think about it, it’s a very negative outlook on these children.
A Paradigm Shift.
Now there is a relatively new process of working with kids who have these issues that tries to do away with all that negativity. It’s called the Nurtured Heart Approach. It consists of a set of strategies that assists children in developing their self-regulation, and transforming the way children perceive themselves and the world around them. And it has created a huge amount of success by concentrating on positive behaviors instead of all the negative behavior.
For this episode we’re joined by Dr. William Rowell, a retired licensed Psychologist with Pine Rest Christian Mental Health Services of Grand Rapids Michigan who has spent the last years training parents, educators, foster parents, social workers, and law enforcement personnel in the Nurtured Heart Approach. He explains how the Nurtured Heart Approach works, why it’s more successful than other strategies, and how making a paradigm shift in your thinking will make all the difference for your special needs child.
Dr. Rowell’s Email: william . rowell @ pine rest . org. – be sure to remove the spaces.
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Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.
Not A Symptom of Something Else.
For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder. And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.
SPD Parent Zone.
My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.
If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.
If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have a Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!
A few months ago, while in a doctor’s office for a checkup, reading the usual magazines, my wife happened to see an article about Soledad O’Brien. She talked about her son Jackson, who was having issues in school with behavior and not understanding instructions from the teacher. Finally, Jackson was diagnosed with 80% hearing loss and is now receiving special support help in school. The interview detailed much of the work that Soledad does, not only for her own children’s education, but also her charity, The Starfish Foundation, which helps support education for middle to low income girls in school.
The article inspired us to get in contact with Soledad’s production company to ask if she would be willing to talk about some of the work she does and the issues that matter to her most about education and special education in America, and around the world. We’re pleased to say that she graciously agreed and this is episode is the resulting interview.
A Great Advocate For Education
As you listen to hear speak, it’s clear that Soledad O’Brien is not only a great advocate for education, but she stresses the importance of all parents being involved in their children’s education, whether the child is in special education or general ed. She is also passionate about the need for proper funding for public education and special education. As she says in the interview, “…the amount of money that it takes to keep people in prison could pay for them to go to Harvard.”
The Starfish Foundation– The education charity founded by Soledad O’Brien and her husband, Brad Raymond.
Matter of Fact. New in-depth interview program produced and hosted by Soledad O’Brien.
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In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.
Living With Aspberger’s Syndrome
As a child, Alix Generous was misdiagnosed with the wrong disorder and had a great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.
At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.
Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.
She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:
“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”
For many parents of special needs kids, special education rights continue to be the main cause of concern and worry. Are our kids being given the right accommodations in school? Are the schools being held accountable for special education services, and who is supposed to be checking to see if they are?
Further, with a push in this country to seriously consider doing away with public schools and instead moving into privatizing the public education system into a for-profit model, where does this leave special education and what rights will parents of special needs kids have if it happens?
What Are Your Education Rights?
Back in October of 2016, I attended a rally for Special Education that was held in Lansing, Michigan. Among the speakers at the rally was our guest for this episode, Kristen Totten. She is an education attorney with the American Civil Liberties Union of Michigan (ACLUMich). Kristen spoke at the rally about the special education rights that the ACLU is working on to help our kids. I asked her to be a guest on the podcast and she agreed.
For this episode we talked about the current state of special education rights in Michigan and across the United States, how some states, like Michigan, allow Charter Schools to reject special education students even though they are required to accept them, and what parents can do to get involved to make sure the education rights of their children are being met.
Update: A Major Victory.
One of the issues we addressed in the podcast is the work that the ACLU of Michigan has done along with Lt. Governor Brian Calley in eliminating the use of restraints and isolation on children in schools. And I’m pleased to be able to say that within 24 hours of our interview being recorded, the Michigan State Senate passed the bill that ends the use of those in all schools.
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ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.
This Episode Is Part Two.
My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.
Dr. John McCaskill, of McCaskill Family Servicesin the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.
Dyslexia, Dysgraphia, Dyscalculia and Other Learning Disorders.
In this episode, Dr. McCaskill talks about Dyslexia, Dysgraphia, Dyscalculia, and other learning disorders. He breaks down exactly what each disorder is, how it affects those who have it, and what kinds of treatments and therapies can help. He also discusses how to advocate for your special needs child with schools to make sure the school is offering not just the appropriate help, but the correct kinds of help; how families need to ensure that they are also supporting kids with special needs the right way at home; and how parents can make sure they are finding the right kinds of therapies and treatments for their kids outside of school.
As always, please share this episode with everyone you know. Just use the social media buttons at the bottom of this posting.
ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.
This Episode Is Part One.
My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.
Dr. John McCaskill, of McCaskill Family Servicesin the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.
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.
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.
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For some parents of Special Needs Children, trips to the ER – Emergency Room – can become as frequent as going on family outings. Those trips can be frightening for both the parents, the special needs child, and the siblings. What can parents do to minimize trips to the ER? When is a trip to the ER necessary? What can parents do to minimize their children’s fears when going to the emergency room? Additionally, what should parents do to make sure their concerns are being met?
For this episode, we are fortunate to have as a guest, Doctor Patricia Schultz an emergency medicine trained physician. After finishing residency and practicing in the ER for a few years, she found her real passion was utilizing her medical training to help patients and families get the best medical care possible. She also taught medical students how to perform to the best of their abilities while having the utmost empathy, respect and compassion for their patients. Dr. Schultz is currently a healthcare consultant in the private sector, and is working on writing her second book.
She talks about how parents can lessen children’s fears of the ER and the doctor’s office in general. What parents can do to help doctors and staff members understand the unique challenges our kids face. How parents can best advocate for their kids. How to make sure that in an over-worked environment like a busy ER, that the staff is really focusing on our children.
Dr. Schultz also discusses what parents should do when conflicts arise with the medical staff, which unfortunately can happen. The dangers of trying to diagnose our kid’s medical problems through internet searches. Finally, why it’s important to follow up an ER visit with an appointment to your family doctor or pediatrician.
Disclaimer: Dr. Schultz’ contributions in this episode are for informational purposes only. Always talk your family physician or pediatrician before trying any kind of medical treatment, therapy, or medication.
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!
Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.
To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early. From the website:
“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”
In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.
Amazing Me – It’s Busy Being 3!Parents, this book for children ages 2-4 will show you what to look for as your child grows and develops. Whether you read this story to your child online or have a hard copy of the book, ask your child to find the koala bears. Each page with a koala bear also has a star and milestone at the bottom just for you. See if your 3-year-old is able to do some of the same things as Joey.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumblr, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those services. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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.
LEAP, which stands for Lead Empower Assist Parents is a day-long six hour conference, scheduled for Saturday, March 12th, 2016, for parents of Special Needs Children in Kent County, Michigan. The workshop is designed for parents and providers of children with special needs to meet with area experts, educators, therapists, and other organizations who work to help children with special needs. Exhibitors, vendors and service providers will be on hand throughout the day to share resources and answer questions.
Many presenters at this year’s LEAP Conference have been guests on Special Parents Confidential and they will be talking in greater depth about their services. For my own Keynote Presentation, I’m going to talk about Special Parents Confidential, why I decided to create the podcast, and what I’ve learned in the three years that I’ve been doing these episodes. You’ll also have a chance to ask questions and I’m interested in hearing your ideas for future episodes.
Some of the breakout sessions during the day include legal planning for a child with disabilities, challenging behaviors: when typical parenting strategies aren’t working, caring for the caregiver, building communications skills through play, aided communication for early childhood, and much more. You’ll also be able to meet the presenters in the vending area. Free childcare will be provided throughout the day by the David D. Hunting YMCA.
There’s still time to register to attend the LEAP Conference. You can find out more information on the Kent ISD LEAP Conference Page, and you can register to attend the conference (cost is $15.00 per person) by Clicking on the LEAP Registration Page. If you live in the West Michigan area, I highly recommend you attend the Kent ISD LEAP Conference. Looking forward to seeing you there!
What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?
As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings.
In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.
Links To Websites Mentioned In This Podcast:
The Sibling Support Project–Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
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 HelpMiracle 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.
Back in June of 2015, we interviewed Michigan Lt. Governor Brian Calley about his concerns on special education, and his efforts to provide better inclusion for parents in the education process. You can listen to that interview by clicking Special Parents Confidential Episode 24
Today we received the following email update from Lt. Governor Calley:
Good afternoon,
There is no doubt that educating a child with Special Education needs has its own unique challenges for parents and educators. It is important that we work to ensure Michigan’s system is the finest it can be to serve students and parents safely, openly and constructively. For months, I have traveled across Michigan to listen to parents and requested feedback via an online survey. I have made nine listening tour stops to date and heard from nearly 2,000 parents online.
Now it is time for the next step. On Tuesday, September 8, I will be providing testimony before the state Board of Education regarding what I have heard and learned during this process and how we can all work together to make necessary improvements. The meeting will be at 11:30 a.m., at the John A. Hannah Building, Fourth Floor, 608 West Allegan Street in Lansing. Please feel free to attend if you’re available. The Department of Education also will be livestreaming the meeting. The link will be available at www.michigan.gov/mdeon Tuesday morning.
I have appreciated the input I received from many of you in person and online. Now it’s time to harness all of our efforts and work together to improve special education in Michigan for everyone.
Sincerely,
Lt. Gov. Brian Calley
*****************
This is the final part of an extraordinary effort on the part of our Lieutenant Governor to help improve Special Education in Michigan. For the full details on why he is making this happen, take a listen to our interview in Episode 24.
Be sure to view the live-stream coverage of the meeting on Tuesday September 8th at 11:30 am. Use this link to see it live: www.michigan.gov/mde
We are excited to announce that Special Parents Confidential is now available to access for free subscription on TuneIn.
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Our guest for this episode of Special Parents Confidential is Michigan Supreme Court Justice Richard Bernstein. In November of 2014 he became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.
Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.
However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”
In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Once in a while you come across a website that is just so compelling, so useful, and so helpful that you have to share it with everyone you know.
Thirty million people have done that with The Mighty.
After finding out that his daughter had a rare genetic disorder, and his son was born with a health challenge, the founder of The Mighty, Mike Porath, decided to build a website where people could share their emotional struggles and help each other.As he says in his own article on why he started The Mighty,“Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability.”
The Mighty started out as a site where parents of special needs children can vent their frustrations, post their triumphs, and share with each other their experiences. They’ve grown beyond special needs to health challenges, and even posts written by people with special needs and health challenges who offer their own unique perspectives.
In this episode we talk to Mike Porath about The Mighty and how he brought the website together. He also talks about where he hopes to see The Mighty go in the coming years, and what he wants the site to become. It’s a fascinating story and a fascinating interview with a real visionary who just started off by asking a question: “What can we do about this?”
Below are some links to various articles on The Mighty that were mentioned in the podcast.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!
School districts across the United States are facing education funding problems. Whether through outright tax cuts, or reductions in revenue from State allocations, education budgets are getting smaller every year.
Unfortunately in order to save funding for general education programs some districts have made the hard choice of reducing special education programs by eliminating support staff, teaching assistants, specialized therapists, social workers, intervention specialists, or any combination of staff who work with special education students.
Recently, one school district in Michigan has taken a bold step to help fund their special education programs. The Kalamazoo Regional Educational Service Agency (KRESA), which oversees nine school districts and four public service academies in Kalamazoo County, Michigan, put together a ballot initiative to raise taxes specifically to fund their regional special education programs for the next six years. Despite widespread sentiment among most people against raising taxes, the ballot initiativepassed successfully.
John spoke to KRESA Superintendent Dave Campbell to talk about the initiative and how their combined districts were able to get the funding passed. Proving that taxes to fund education can be raised when parents, educators, administrators, taxpayers and voters work together to make sure the message is heard.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Please note: the link to the news article on M-Live about the successful election may be expired, depending on when you see this post. Typically they are good for about two years after the posted date, which was two months before this episode was posted.
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.
There’s probably nothing more nerve-wracking and stressful for any parent than the realization that your new baby, your toddler, your child might have some problems. Whether it’s not speaking, not walking, or not engaging socially like other kids, the hardest question many parents face is, what do I do about this?
Of course friends and relatives will tell you, oh it’s alright, that’s just how some boys or some girls are… and they’ll grow out of it. But that’s not always the best advice, and if your child does have a developmental delay or a learning disorder, they are simply not going to grow out of it. They need help. And then the question becomes, where do I get that help?
Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Barbara Corbin is the Early On Coordinator with the Kent Intermediate School District in Kent County, Michigan. She handles Early Intervention, and Early Childhood Special Education with school districts. She helps parents get their first diagnosis and coordinates getting help for children right at the very beginning. Thanks to advances in medical research and therapies, children can be diagnosed very early, and Early On programs can start at age two.
Links to websites mentioned in the podcast:
1800EarlyOnEarly Intervention information for Michigan, with links to other States. The website name is also their toll free phone number: 1 800 Early On.
The Arc of Kent CountyInformation resource for people with intellectual and developmental delays.
Michigan Alliance for Families.Provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services.
For parents of special needs children perhaps the most stressful and anxious time is when you are first told that your child has problems. That first diagnosis is such a shock. You don’t know what to do, you don’t know what to think, and you feel completely overwhelmed with it all. One of the most helpful things for parents of special needs children is when they hear stories of other families who have already gone through similar experiences and have shared their story. The challenges and struggles are universal, no matter what the disability or the severity. Just knowing that someone else is out there facing the same worries and fears, and has taken the time to tell that story, can be very reassuring.
In this episode of Special Parents Confidential I’d like to introduce you to just such a parent. In 1970, Donna Kirk, who, with her husband Ed, is from a town near Toronto, Canada, had gone to the hospital for the birth of her first son, Matthew. But problems occurred and their baby had oxygen loss during birth and suffered severe brain damage. The next day their son was transferred to Sick Kids Hospital in Toronto where the doctor there told them that their son was basically, in his words, “a vegetable with a heartbeat”. This doctor advised them to institutionalize their son and have another baby as soon as possible… implying that they should just forget Matthew.
Donna and Ed ignored what the doctor told them and took him home as soon as they could. They fought for him and cared for him throughout his entire life and, in the process, proved that first doctor and many other people wrong about Matthew’s abilities. Ed and Donna had two other children after Matthew, a brother an sister. Matthew died at the age of 40 in 2010, and Donna has written a book called, Finding Matthew, about his life, his challenges, and the struggles that she and her husband went through from his devastating diagnosis to his ultimately successful life and becoming a contributing member to society. The book shows how even the most severely disabled people have incredible gifts and how the family can work together to get through any adversity. It’s definitely a must-read for all parents of special needs children and their families.
Donna’s extraordinary book, Finding Matthewis available on Amazon Books, and you an click either of those links to take you to the page. Donna Kirkalso has a blog site where she posts resource information and updates. Just click on her name and you’ll be re-directed to her site.
As always, a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes and Stitcher as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Individualized Education Plans. IEPs for short. Possibly one of the most stressful times for parents of special needs children. IEP meetings are those annual events when parents meet with schools to plan out the kinds of help and services their special needs children are going to receive for the next school year.
IEP meetings are very long, sometimes taking two hours or more, and usually filled with terminology that can sometimes be overwhelming. Parents are expected to understand a huge amount of information and make decisions on what kind of educational support their child will receive in the next grade year. The problem is for many of us, we don’t even know how our kids are going to do from week to week, much less three or four months later, after the entire summer break.
Typically the schools bring in the teacher, the special education teacher, any school therapists, the school social worker, and the Principal or Vice Principal of the school. Sometimes the school or district psychologist will attend, sometimes the district’s Director of Special Education will also attend. There can be as many as ten to fifteen people representing the school in these meetings. It is very easy for parents to feel ‘ganged up on’ or intimidated, especially when there is often only one or two parents in the room.
This is where Attorney Advocates can help. Lawyers who work in special education advocacy and mediation are trained in all areas of special education law. They can be the parent’s voice in the room and they know exactly what the laws are in what the school should be doing for your child and whether your concerns are being addressed.
Our guest on this episode of Special Parents Confidential is Attorney Randi Rothberg who’s firm, Thivierge & Rothberg is a Special Education Law Firm based in New York City. She and her partner, Christina Thivierge focus exclusively on representing families of children with special needs, including attending IEP meetings, mediation, Due Process, and, when necessary, litigation in the State and/or Federal Courts. She talks about some of the problems that can arise when parents face an IEP meeting, how to prepare for those meetings, what to watch out for when you’re faced with things you don’t agree with in an IEP, and how to look for an advocate in your area. Randi also does advocacy work for issues of bullying in schools and discusses addressing those situations.
LEGAL DISCLAIMER:
Some of the legal issues Randi discusses are general, however some points, such as the “Parent Member in IEP meetings” are specific to New York State and may not apply in your State, or Country. Please consult a Special Education and Disability Law Attorney or Special Education Advocate in your area for complete information on your State laws and your rights.
Here are the links mentioned in the podcast:
Thivierge & Rothberg PC– Representing children and adolescents with disabilities in New York & New Jersey
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.
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:
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.
One of the major benefits of the Internet is the amazing amount of information that is available on virtually any subject you might want to know about. The problem is trying to figure out what information is accurate and what information is nonsense, especially when the nonsense information comes disguised as something credible. This is especially true for parents of special needs children who are trying to find reliable and accurate information for their children. There are far too many websites containing unproven information, fake cures, and outright lies about various learning disabilities, special needs disorders, and treatment options.
Thankfully many groups and organizations are counteracting these fraudulent sites with accurate, evidence-based research sites that have peer-reviewed, credible information. And many of them are doing everything they can to make it easier to get the accurate information that parents need. One such site isUnderstood.org.
About two years ago a group of fifteen different organizations, including the National Center for Learning Disabilities, The Parents Education Network, Learning Disabilities Association of America, Common Sense Media, and others, decided to combine their resources for parents and educators to be able to access the latest tools and information for children with learning disabilities. Understood’s goal is to help the millions of parents whose children, ages 3–20, are struggling with learning and attention issues. They want to empower them to understand their children’s issues and relate to their experiences.
One of the features onUnderstood.orgare blog articles written by parents and experts, and on this episode of Special Parents Confidential, we are joined by one of Understood’s parent advocate, writer, and contributor, Amanda Morin. Amanda is an education writer and a special education advocate. She uses her experience as an early interventionist, teacher and a special needs parent to inform her work. She has written two books and she is also a parent of three kids, two of whom have learning disabilities. In our interview, she talks about her challenges as a parent, her background in education, and how she began to use her training in special education advocacy to write books and blogs about how to navigate the world of special education.
Here are links to the websites mentioned in the podcast:
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, 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.
Special Parents Confidential Episode 18 Living With Dyslexia
Dyslexia is possibly the single most mis-understood of all disabilities. People who don’t have it think that those who do see misspelled words, or letters out of order, or even that they read backwards. But none of that is actually true. People with Dyslexia can recognize letters and words, and even sentences. The real problem is the comprehension component of reading is diminished, or in some cases not there at all.
New research has shown that there is a specific area in the brain that causes Dyslexia and the hope is that new treatments may come from that discovery. But those treatments are still a long way off and in the mean time many children and adults are continuing to struggle. Added to this is the fact that as of right now, March of 2015, only 24 states in America recognize Dyslexia as a learning disability and have specific treatment protocols for school districts to follow. That means that over half of the school age children in the United States who have Dyslexia are not getting the right kind of help, if they’re getting any help at all.
One of the aspects of children with special needs that many people don’t understand is that a child can have more than one specific disorder. A child may have ADHD, Asperger’s Syndrome, Autism, or Downs Syndrome, and also have Dyslexia. But if the main disorder is more prevalent, the Dyslexia may not be recognized or even noticed without a more intensive diagnosis.
Dyslexia is the best known of these disorders, and causes problems with reading comprehension. There is also Dysgraphia, which causes problems with handwriting, and Dyscalculia, which causes problems in mathematics comprehension. Over the next series of podcasts, we’re going to take a closer look at Dyslexia and the related learning disorders to try to get a better understanding of the causes and the treatments.
To begin, I wanted to get a better idea of what it’s like to have Dyslexia and how it affects the ability to read and learn. Fortunately a friend of ours is willing to talk about her challenges. Elizabeth D’Aurora is a third grade elementary school teacher in West Michigan and she has Dyslexia. She talks about some of the problems and difficulties she had in school. As an educator she also discusses treatments and therapies for Dyslexics and their effectiveness. As you’ll learn in this podcast, there is no ‘cure’ for Dyslexia. No one “overcomes Dyslexia”; instead the person learns ways to cope and strategies for learning that can help them in school and beyond.
For more information on Dyslexia and related learning disorders visitUnderstood.org.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
We’re working on more interviews in the next few weeks. Some of the subjects we’re covering:
Did you know Dyslexia is only recognized in 24 states as a learning disability, with specific definitions and guidelines for special education? We’re doing two episodes devoted to living with Dyslexia. We will be talking to an elementary school teacher who has Dyslexia to learn how she dealt with Dyslexia while growing up and how she now teaches. We’re also going to talk to a mother and son (the son has Dyslexia) who are working together on trying to get Dyslexia recognized as a learning disability in their state and other states.
We’re also going to talk to an RN with our local health department for medical advice and health issues that are important for special needs children and adults.
Be sure to subscribe to our social media pages, we’re on Facebook, Twitter, Google Plus, Linked In, and others where you can comment and give us suggestions for future episodes! Don’t forget you can subscribe to our email list, and find our podcast on iTunes and Stitcher.
We’re working on some big plans for this year to make Special Parents Confidential even better, so be sure to connect with us for all the news and updates as we go!
Finally, be sure to share our site with your friends and family. You never know who might be interested or have a need to know something we have here. We do these podcasts for you and your help in spreading the word is what keeps us going!
Special Parents Confidential Episode 17 When Schools Say ‘No’.
In 1990 Congress passed IDEA, or Individuals with Disabilities Education Act, which entitles each student with a disability to a free appropriate public education (FAPE) to meet his or her unique needs. Originally titled Education for All Handicapped Children Act of 1975 (EAHCA), it was based on Congress’ finding that the millions of children with disabilities had educational needs which were not being met due to a lack of services and inappropriate public school placement. IDEA set down guidelines for how schools and states were to implement special education procedures.
Unfortunately, there is a wide disparity across states as to how those guidelines should be implemented, or even interpreted. Similarly, school districts can even have differing standards for services they offer in special education. Simply put, IDEA allowed States and schools a lot of leeway in special education implementation, based on numerous issues including need, population, local economic factors, and other considerations.
The problem for parents is, this leeway in the implementation of procedures can sometimes allow States and school districts to restrict or even deny extra help for students who don’t fit the exact definition of a particular disability or learning disorder. School Districts and States are also cutting certain aspects of special education support from Education budgets as cost-saving measures. While districts and States aren’t outright eliminating Special Education, they do cut budgets for support programs, assistant teachers or para-pros who help in the classrooms, and other accommodations. The result is many parents are finding out that their children will perhaps get minimal help (the least allowed under regulations), but more often than not they hear the word ‘no’ when asking for additional help or support for their child.
So what can you do when your school or State says ‘no’?
Our guest in this episode has some answers.Suzanne Wilcoxis the co-owner ofHope Educational Consulting, LLCa special education advocacy service based in Ohio and Michigan. She is also the mother of four children, two of whom needed special education support in school. She explains how IDEA works, and how schools and states interpret those regulations. She also explains how ‘best practices’ can sometimes be overlooked due to budgeting, or availability issues.
During the time when she and her family lived in Ohio, she and her partners were instrumental in creating and passing legislation that allowed Ohio to become one of the first States in the country to recognize Dyslexia as a learning disability, and implemented official regulations on the kinds of therapies schools must offer to help students with Dyslexia. She has worked with parents, teachers, school districts, and legislators on numerous issues with special education.
Suzanne offers some great advice and information that all parents of special needs children need to know. Please feel free to share this episode with everyone you know who has a child with special needs or works with children who have special needs.
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.
For many parents one of the challenges in raising a child with special needs is finding the right therapy for your child. Sometimes we get lucky and find the right kind of therapy right near where we live. Unfortunately for some people there’s nothing nearby that can help. Travel can be an option depending on distance, and financial ability. But for many the only option is to simply wait and hope that the therapy will someday come to them.
Then there are those who don’t wait. They decide that they will do what it takes to bring the therapy to their area to help others as well as themselves. Our guest on this episode of Special Parents Confidential is someone who is doing that right now.
Mika Vuto is the mother of a young girl with Down Syndrome. Although there are therapies available in her town of Gainesville, Florida, there was one group she had heard about,Gigi’s Playhouse, that looked like an incredible asset that could help many people… because they offer their services for free. Unfortunately the closestGigi’s Playhousewas in Atlanta, Georgia.
Finally Mika decided to open her own franchise ofGigi’s Playhouse in Gainesville. She talks to us in this episode about her journey from a mom looking for help to a community leader who wants to make a difference for her daughter and many other families with members affected with Down Syndrome. She also talks about the services Gigi’s Playhouse offer to children and parents.
TheGainesville Florida Gigi’s Playhouse is scheduled to open in 2015. You can find out more about them and learn how to make a contribution to help by visiting theirFacebook Page. You can also learn about their progress on theirblog.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
One year ago this week I posted the first two podcasts on the newly minted Special Parents Confidential website. Fifteen episodes in one year, about three more than I thought I would be able to get produced, which puts me ahead of my expectations. And that’s always a good thing.
What does it take to create a podcast? As far as equipment goes, not much really. A mixer, a microphone, a phone interface, headphones, speakers, a digital recording platform, and some wires to connect it all.
But Special Parents Confidential is far more than the equipment. It’s a lot of people who helped me get started nearly six months before this date last year. Those people and their contributions are listed on the About Us page and I’d like to encourage you to take a look at the links to their own websites because they are some amazing people who do incredible things.
Most importantly I’d like to thank the 15 people who agreed to take time out of their busy schedules to answer questions about what parents of special needs children need to know and what they do to help. Some very graciously took a long time, nearly missing important events or meetings, just to make sure they answered every question.
When I started these interviews my goal was to create an online support group for parents of special needs children who aren’t able to attend support group meetings. Thanks to these first 15 people I can say that the goal has been exceeded
Here’s the list of those fine people and their episode subjects once again. If you haven’t heard all these interviews yet, please take a listen!
It’s been an amazing journey. I’m looking forward to continuing with more episodes in 2014 and beyond.
To everyone who agreed to be interviewed, to everyone who helped out in making this podcast and website a reality, and most of all, to you for finding my site, taking a listen, and then recommending these episodes to people you know:
Applied Behavior Analysis or ABA is a term parents of special needs children hear a lot in schools, doctors offices, therapy centers, and just about anywhere our kids interact with people. Studies have shown that ABA can be used to help children as early as 18 months learn to cope with everything from social settings to the educational environment. ABA has been proven to be successful especially for children with autism and can be used to help kids with other disabilities and disorders.
In this episode John talks with Conny Raaymakers, who is director of ABA serves at Developmental Enhancement Behavioral Health, a group that specializes in using ABA for the treatment of autistic children. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist. She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.
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.
Deciding Who Sees Students’ Data. New York Times Article.
Privacy issues are becoming more and more prevalent in almost all aspects of our lives. Now we’re starting to see concerns over the way schools are keeping and storing the private data of their students. For a parent of any student this raises issues but especially for parents of special needs children who’s private records can include medical records such as their diagnosis, therapy information and prescription medications and much more personal information.
This article from the New York Times is a must read for parents and educators. While there can be benefits to utilizing cloud-based data storage, there can also be many concerns over security and potential theft of records. Deciding who sees students’ data is an issue that should include parents, teachers, school administration, and the school board, not just a few people. While no system may be truly perfect, this is issue far too important to be simply made without real investigation and research.
Special Parents Confidential Episode 13 The Friendship Circle
One of the recurring themes we have in our podcasts is how some of the best information and support comes primarily from parents of special needs children. We know what our children need for help and it’s incredible when some parents step forward and create groups and organizations that fill those needs when other avenues are not available.
This is certainly the case with the group we are talking about in this episode.The Friendship Circlewas created by parents and family members of special needs children to help those children find friends and support. They’ve grown in just a few years from a group of a few parents who started bringing their kids together in Detroit, Michigan, to a now nearly world-wide organization. They pair up special needs kids — all children with physical, developmental, or learning disabilities are welcome no matter what the diagnosis — with ‘normal’ or ‘neuro-typical’ kids to be friends and help each other. As it turns out, all of the kids get something incredibly rewarding from the experience.The Friendship Circleoffers sports activities, tutoring, play time, and they even have a mock-village where special needs children can learn life skills like going to the bank, the store, and other social situations that happen in every day life. They also have a phenomenal anti-bullying program, which was created by the parents and the kids called theUpstander Project, that is making an amazing difference in schools across the country.
Our guest for this episode is Rabbi Tzvi Schectman, who is a family coordinator at the Friendship Circle. Most people first encounter The Friendship Circle through the daily emailed newsletter, known asThe Friendship Circle Blog, that Rabbi Schectman compiles. These emails feature articles on many different kinds of information that parents of special needs children can use.
Links mentioned in this podcast:
The Friendship Circle.orgWebsite for The Friendship Circle organization. Learn more about this amazing group.
The Friendship Circle.comFriendship Circle International – to find Friendship Circle programs and groups in locations around North America and the world.
Weinberg VillageThe mock-village facility run by the Friendship Circle.
Upstander ProjectThe anti-bullying program created by The Friendship Circle.
The Friendship Circle BlogThe newsletter from the Friendship Circle with great articles and advice for parents of special needs children. You can subscribe to have the blog sent directly to your email each day.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
