We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. In order to understand what it’s like to have Autism, you should hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. It is not a disability. Browsing Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 2. Daniel Share-Strom
For SPC Episode 69, we talked to Maxine Share, who started Autism Goggles as an outgrowth of her advocacy work that began with her son.
In Part 2 of our interview, we talk to Maxine Share’s son, Daniel Share-Strom. His own struggles with Autism and Aspberger’s Syndrome were the basis of Maxine’s advocacy for parents. From his bio on the Website: “Daniel is a writer, motivational speaker, workshop facilitator, and co-founder of Autism Goggles, a social initiative determined to ‘reframe understanding of autism’ to focus on ability and strengths.
“Diagnosed with autism at a young age, Daniel has been moving audiences with his self-awareness, poignant insight, and humour for nearly 15 years. He does this with full-day workshops and speeches which help parent groups, universities, autism organizations, workplaces, and health care professionals to understand the many features and traits of autism using plain language and practical examples. Daniel is committed to equality, fairness, and social justice for all people as he works to shift society toward acceptance and understanding of neurodiversity. He speaks up and speaks out for those who have not yet found their voice.”
We’d like to introduce you to Autism Goggles, a website and blog dedicated to helping people understand what it’s like to have Autism. Created by Maxine Share, and her son Daniel Share-Strom, this site is an outgrowth of Maxine’s work as a special education advocate. She began this career while trying to help Daniel get the help he needed in school.
Put On Your Autism Goggles
The best way to understand any situation is to talk to someone who has experience with it. And the best way to understand what it’s like to have Autism, is to hear from someone who has Autism. Both Daniel and Maxine have Autism, although Maxine didn’t get her diagnosis until later in life. Through their blog and their advocacy work, they encourage ‘neuro-typicals’ to “put on your ‘Autism Goggles’ to understand the autistic mind.
There’s Much More Beneath The Surface
What you will learn is that people with Autism don’t want a “cure” – they just want acceptance and understanding of the way they are. Autism is not a disease. Autism is not a disability. Through Autism Goggles, you’ll learn it’s simply a different kind of social interaction and thinking. You’ll realize while people with Autism may have difficulties in communication, that doesn’t mean they don’t have anything to say.
Part 1 – Maxine Share
We’ve divided this interview into to separate episodes. In Part 1, you’ll hear from Maxine Share, as she tells her story of how she became a special education advocate in her home of York, Ontario, Canada and the work she does with Autism Goggles. Part 2 will feature our interview with her son, Daniel Share-Strom.
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This episode could probably be called Parent Story number four, but I’ve chosen to call it When The Nightmare Happens. Because this is the kind of parent story that you don’t want to happen.
Meet Kiri Salazar.
Kiri Salazar is a person that my wife Sarah and I met here in the Grand Rapids Michigan area. She is a widow and her son Alexei has non verbal autism. Like many people she has a blog, where she writes about her life and her son’s challenges. This past November, 2018, Kiri shared a story about an incident with her son that was about as frightening and stressful as it can get. Fortunately, as you will hear, the incident eventually turned out fairly well. But I felt it should be shared, which is why I invited her to be on this episode, and she agreed to do it.
What Would You Do?
I should warn you that Kiri’s story is difficult to listen to. But her hope is that by sharing it she can perhaps help other families who may be faced with a similar situation. Our greater hope is that some officials in government, who are in a position do something about the challenges we talk about, can help to remedy these situations by coming up with ways to provide better support to families.
Kiri’s original blog post about her son’s incident: With Prejudice
Reminder
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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.
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In this episode we’re taking a look at Collaborative & Proactive Solutions, which was developed by Dr. Ross Greene and his Foundation, Lives In The Balance. Child behavior problems are always a concern for parents, and sometimes it can seem for parents of special needs kids that the behavior concern is a constant problem.
Punishments and Discipline Don’t Work.
For as long as anyone can remember, the basic correction method for misbehavior was centered on punishment and discipline. However, that model often fails miserably, and we know this is true, because it’s evidenced by the fact that we have so many prisons full of the results of that failure. So why do we keep enforcing a system that doesn’t work?
Treating Causes Instead of Symptoms.
Over the past few decades a new model of behavior, called Collaborative and Proactive Solutions, or CPS, has been developed with a much greater rate of success. This model was founded by Dr. Ross Greene, who, while on the faculty of Harvard Medical School, began to take a different look at kids with behavior problems.
Collaborative & Proactive Solutions.
From his organization’s website, Lives In The Balance: The model is based on the premise that challenging behavior occurs when the expectations being placed on a kid exceed the kid’s capacity to respond adaptively, and that some kids are lacking the skills to handle certain demands and expectations. So the emphasis of the model isn’t on kids’ challenging behavior, which is just the manner in which they are expressing the fact that there are expectations they’re having difficulty meeting. Nor does the model focus on psychiatric diagnoses, which are simply categories of challenging behaviors. Rather, the model focuses on identifying the skills the kid is lacking and the expectations he or she is having difficulty meeting.
To tell us more about how the Collaborative and Proactive Solutions model works and why it works, we’re being joined by Kim Hopkins who is the Director of Outreach for the official Collaborative and Proactive Solutions Foundation, Lives In The Balance.
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In recent months there’s been a resurgence of concerns about vaccine safety. Claims about this year’s flu shot being ‘not as effective’, has given the anti-vax movement new attention. But, as we noted in 2015 when we posted this episode, those claims are nonsense. So here’s a revisit of SPC episode 22, in which we interview a real expert on vaccine safety.
What Is The Truth?
In the last 20 years or so we have seen an increase in popularity of an anti-vaccine movement which is based on some very disturbing claims about vaccine safety. Primarily among them being that the MMR vaccine, which stands for Measles, Mumps, and Rubella, causes autism. Others claim all manner of health problems can come from vaccinations and that we, as a society, should stop vaccinating our children in any way.
But are those claims valid? Do they have any real scientific proof? For that matter, how safe are vaccines and immunizations? Who makes them? How are they tested? What kind of research, safeguards, and oversight is done before a vaccine is allowed to be used in public? Are they just thrown together in careless disregard by big pharma corporations for big profits, as the anti-vaccine movement claims, or is there a much more scientific and careful approach with regulations and oversight from medical groups, the CDC, and the FDA?
Hear From A Real Expert.
Our guest on this episode of Special Parents Confidential is going to answer a lot of those questions. Mary Wisinski, RN BSN, is the Supervisor of the Immunization Program at the Kent County Health Department, located in Grand Rapids, Michigan, and she has graciously agreed to this interview to provide credible and accurate information. And what she has to say is very important for every parent to hear and understand.
More importantly, Mary answers the one question that the anti-vaccine people have never dared to address: Are there documented cases of children who were not vaccinated, yet still developed autism? Listen to this episode to hear the answer for yourself.
Valid Links.
Mary has also supplied a PDF with links to websites that contain accurate, proven, peer-reviewed research that prove the safety and importance of vaccines and immunizations. There is also links to books you can purchase for more information, a toll free number to the Center for Disease Control where you can speak to CDC staff on vaccine safety 24/7, as well as a DVD on vaccine safety. The website links are listed below and the PDF form link is below them:
Vaccinate Your Baby– contains a broad array of educational materials and information about vaccines, their safety, vaccine research and science, vaccine misperceptions, and many other topics for clinicians and parents.
Every Child By Two another site with great information for parents and clinicians.
Center for Disease Control offers a toll-free number for consumers and healthcare professionals who have questions about immunization and vaccine-preventable diseases. Call (800) CDC-INFO or (800) 232-4636. The Center operates 24/7 in English & Spanish. TTY: (888) 232-6348.
Please note, on the PDF form there is a link to a site called the National Network for Immunization Information. That domain has expired and the links are no longer active.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Death and grief are subjects that are often overlooked at the holidays. Celebrations can be difficult for families who have recently experienced a loss. Adults and children experience grief in different ways, especially children with special needs. The important thing to remember is there is no time-frame for ‘getting over it’ or even the so-called ‘sense of closure’ (which often never happens). With that in mind, we invite you to listen again to episode 32 from January of 2016, to get some great advice on coping with grief.
Death is one of those subjects that few people want to talk about, yet everyone will experience. For children, death, and the grief that comes with it, can be very hard to talk about. Many kids, even teens, don’t have the abilities or the tools to adequately express their emotions. And when a child has special needs that can make expressing emotions, or even basic communication challenging, the lasting effects of dealing with death and grief can be devastating.
Children Experience Grief Differently.
As parents, it’s sometimes easy to forget that our kids are upset when we face the loss of a parent, grandparent, sibling, or family friend. We see them playing together at funerals and think to ourselves that they’re okay. Sometimes it’s not till days or weeks later that the emotional problems begin to show themselves. Death and grief are difficult to understand for children, no matter what the age.
Support Groups Can Help.
Fortunately there are groups and organizations that exist for the sole purpose of helping children deal with death and grief. One such group is Ele’s Place, in Michigan. Our guest on this episode of Special Parents Confidential is Kelly Ahti, one of the program directors for Ele’s Place in Grand Rapids. She talks about the challenges of how grief can affect children of all ages from toddlers to teenagers. Kelly also has ideas of what parents and relatives can do to help kids deal with their emotions and get through the difficulties and sadness that occurs.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
The Holidays always mean family visits, and with that in mind, we thought our episode on a sibling’s perspective would be a good one to repost. This episode is from October of 2015, when we interviewed Aubrey Boerma, who grew up with an older brother who has Autism.
What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”?
As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings.
There Are Answers.
In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.
Links To Websites Mentioned In This Podcast:
The Sibling Support Project–Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.
The Holidays always mean family visits, and with that in mind, we thought the subject of Sibling Support would be a good one to repost. This is the first of two episodes on Sibling Support we did, back in July of 2015.
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
Communication Is Key
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
Groups That Can Help.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
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!
It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Always Call Your Doctor First.
You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults. As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.
If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!
In January of 2014 we posted episode 15 of Special Parents Confidential, in which we learned about Applied Behavior Analysis ABA. Our guest was Conny Raaymakers, who is a board certified behavior analyst. Her interview has become our most downloaded and listened to episode, with nearly double the listens of any other episode we’ve done. It’s even been cited in a text book on applied behavior analysis.
What Is ABA?
Applied Behavior Analysis or ABA is a term parents of special needs children hear a lot in schools, doctors offices, therapy centers, and just about anywhere our kids interact with people. Studies have shown that ABA can be used to help children as early as 18 months learn to cope with everything from social settings to the educational environment. ABA has been proven to be successful especially for children with autism and can be used to help kids with other disabilities and disorders.
New Contact Information.
However, since that interview took place, Conny has had some changes in her career. She is now the Director of ABA services at Developmental Enhancement Behavioral Health. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist. She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.
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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!
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.
It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?
Why Do Colds And The Flu Affect Kids Differently Than Adults?
For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.
Always Call Your Doctor First.
You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults. As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.
If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!
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.
Support Special Parents Confidential.
If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have our very own Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!
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!
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.”
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.
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!
What a difference a year can make. In December of 2014, the Michigan Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. However, during the only Public Comment time the committee allowed, Michigan’s Lieutenant. Governor, Brian Calley asked the committee to suspend the meeting and take no further action, because he felt that there had not been an adequate amount of time to allow parents to have input into the rules changes.
What followed next, in 2015, was an unprecedented listening tour undertaken by the Lieutenant Governor. He traveled around the State, holding public meetings where he listened to parents of special needs children talk about their concerns. These meetings were up to two hours in length, during which the Lt. Governor said very little and allowed every parent who attended to speak.
I was privileged to attend the meeting the Lieutenant Governor held in Grand Rapids, and had a chance to ask him if he would be a guest on Special Parents Confidential to talk about his efforts. That interview took place in June and you can listen to it here – Special Parents Confidential Episode 24.
In November of 2015, Lt. Governor Calley completed his listening tour and compiled a report summarizing the key points from parents for Michigan Governor Rick Snyder, who then appointed Lt. Governor Calley to head a Special Education Reform Task Force, which would take the Lt. Governor’s report and make a recommendations strategy for the State Board of Education. That report was presented to the Board of Education in January of 2016.
We are very pleased that Lt. Governor Brian Calley has taken time from his schedule to talk to us on Special Parents Confidential about the Special Education Reforms that the Task Force has recommended, and what Michigan families can do to help. Lt. Governor Calley also talks about a new project that he and Michigan Supreme Court Justice Richard Bernstein (who I interviewed in August of 2015 – Special Parents Confidential Episode 30) are working on together, called the Hidden Talent Tour.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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!
Special Parents Confidential Episode 32 Death and Grief.
Death is one of those subjects that few people want to talk about, yet everyone will experience. For children, death, and the grief that comes with it, can be very hard to talk about. Many kids, even teens, don’t have the abilities or the tools to adequately express their emotions. And when a child has special needs that can make expressing emotions, or even basic communication challenging, the lasting effects of dealing with death and grief can be devastating.
As parents, it’s sometimes easy to forget that our kids are upset when we face the loss of a parent, grandparent, sibling, or family friend. We see them playing together at funerals and think to ourselves that they’re okay. Sometimes it’s not till days or weeks later that the emotional problems begin to show themselves. Death and grief are difficult to understand for children, no matter what the age.
Fortunately there are groups and organizations that exist for the sole purpose of helping children deal with death and grief. One such group is Ele’s Place, in Michigan. Our guest on this episode of Special Parents Confidential is Kelly Ahti, one of the program directors for Ele’s Place in Grand Rapids. She talks about the challenges of how grief can affect children of all ages from toddlers to teenagers. Kelly also has ideas of what parents and relatives can do to help kids deal with their emotions and get through the difficulties and sadness that occurs.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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
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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
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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!
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.
In the last 20 years or so we have seen an increase in popularity of an anti-vaccine movement which is based on some very disturbing claims. Primarily among them being that the MMR vaccine, which stands for Measles, Mumps, and Rubella, causes autism. Others claim all manner of health problems can come from vaccinations and that we, as a society, should stop vaccinating our children in any way.
But are those claims valid? Do they have any real scientific proof? For that matter, how safe are vaccines and immunizations? Who makes them? How are they tested? What kind of research, safeguards, and oversight is done before a vaccine is allowed to be used in public? Are they just thrown together in careless disregard by big pharma corporations for big profits, as the anti-vaccine movement claims, or is there a much more scientific and careful approach with regulations and oversight from medical groups, the CDC, and the FDA?
Our guest on this episode of Special Parents Confidential is going to answer a lot of those questions. Mary Wisinski, RN BSN, is the Supervisor of the Immunization Program at the Kent County Health Department, located in Grand Rapids, Michigan, and she has graciously agreed to this interview to provide credible and accurate information. And what she has to say is very important for every parent to hear and understand.
More importantly, Mary answers the one question that the anti-vaccine people have never dared to address: Are there documented cases of children who were not vaccinated, yet still developed autism? Listen to this episode to hear the answer for yourself.
Mary has also supplied a PDF with links to websites that contain accurate, proven, peer-reviewed research that prove the safety and importance of vaccines and immunizations. There is also links to books you can purchase for more information, a toll free number to the Center for Disease Control where you can speak to CDC staff on vaccine safety 24/7, as well as a DVD on vaccine safety. The website links are listed below and the PDF form link is below them:
Vaccinate Your Baby– contains a broad array of educational materials and information about vaccines, their safety, vaccine research and science, vaccine misperceptions, and many other topics for clinicians and parents.
Every Child By Twoanother site with great information for parents and clinicians.
Center for Disease Control offers a toll-free number for consumers and healthcare professionals who have questions about immunization and vaccine-preventable diseases. Call (800) CDC-INFO or (800) 232-4636. The Center operates 24/7 in English & Spanish. TTY: (888) 232-6348.
Please note, on the PDF form there is a link to a site called the National Network for Immunization Information. That domain has expired and the links are no longer active.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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!
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.
Empaths on the Autism Spectrum – Autism and Empathy.
Please note, the original link provided in this posting is no longer active. I have found updated links, which can be found below. Sorry for the inconvenience. – John.
We’ve often heard that people with Autism lack social empathy. That people with autism have no emotional connections to others and lack the ability to have compassion.
However, new research has proven that this belief is nothing more than a myth.
The Same As Everyone Else.
The study, Divergent Roles of Autistic and Alexithymic Traits in Utilitarian Moral Judgments in Adults with Autism , was published in Nature, the Journal of Scientific Reports in March of 2016. From the Discussion section of the report, “Therefore, we maintain that the current findings hint at non-verbal intelligence as a compensatory strategy that high-functioning autistics rely on while endorsing moral choices that are in line with prevalent socio-moral norms.”
Also worth noting is the finding that people with ASD were more averse to causing harm to others, even if the decisions would produce better results.
Easier To Read Summaries.
The report itself is very clinical in it’s writing style and may be difficult to read fully. There are some excellent summaries about the findings, which I have linked below.
It is important that this information be shared on social media to counter the incorrect stereotypes that have been prevalent over the past decades. People with ASD are exactly the same emotionally as those who are considered ‘normal’.
A very informative and interesting study is being done at the University of Iowa that shows how 3 and 4 year old children retain what they see around them.
Using an older technology that isn’t as invasive or difficult as an MRI, the researchers have been able to monitor how a child’s brain functions when memorizing. The researchers can now see neurological activity and brain development in children.
From the article: “The research is important, because visual working memory performance has been linked to a variety of childhood disorders, including attention-deficit/hyperactivity disorder (ADHD), autism, developmental coordination disorder as well as affecting children born prematurely. The goal is to use the new brain imaging technique to detect these disorders before they manifest themselves in children’s behavior later on.”
This study is helping to emphasize the importance of early intervention.
When we talk about issues that can cause anxiety for parents of special needs kids, dealing with social situations in school and elsewhere is probably right at the top of the list. Will our children be accepted or will they be teased? Will our kids be able to handle the day to day interactions in the class room, in the cafeteria, or on the playground? What about bullying? And what are we supposed to do when our kids experience problems with these situations?
For many schools the person who can help guide our kids through their day in school is the social worker. They’re also the person who parents can talk to for help with making sure their special needs child can fit into the various social situations and can offer advice that parents can use to reinforce the school’s expectations at home.
Our guest on this episode of Special Parents Confidential is Chris Kenward, an elementary school social worker who has many years of experience dealing with both special needs students and general education students. Many experts agree, the vast majority of social problems begin early in elementary school so the sooner a child with special needs can get help in dealing with social issues, the better their progress will be throughout their life. The information Chris shares here is going to be vital for every parent of a special needs child, as well as for teachers, special education experts, care givers, and anyone who has a relationship with a special needs kid.
Our friend (and first episode guest) Carol Lippert, shared this very interesting article that was published in the Baltimore Sun on April 10th, and written by a parent of a 19 year old boy with autism.
The article has some eye-opening perspectives for people about what a ‘disability’ really means. It’s definitely worth sharing with your friends and family, especially those who may not fully understand what autism means.
For that matter, you could apply the same perspective of this article toward virtually every other disability that people may have.
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