Growing Roots is a new program in West Michigan that’s introducing therapeutic farming. We al know that getting your hands in the soil can help you relax. You get a feeling of accomplishment and it helps to relieve stress.The same thing holds true with caring for animals, whether it’s a pet or a farm animal of some kind.
Back To The Farm.
In the past few years more studies are showing that agriculture therapy and animal care therapy can offer tremendous help for people with physical and developmental disabilities. Growing Roots is all about taking these concepts to the next level.
Hands-On Therapy.
Here in West Michigan where we live, two women are trying to create a sustainable therapeutic farming program called Growing Roots. Jessica Roost and Sarah Baker are joining me on this episode to talk about how they’re getting their program started and their goal, which is to have a fully operational farm with a live-in residency program.
Accomplishment and Achievement.
Growing Roots is going to help provide a sense of achievement, accomplishment, and responsibility that will be a tremendous benefit.
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“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”
The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.
Invisible Special Needs.
Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.
One Family’s EDS Story.
For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school.
To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler. There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.
We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly.
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.
When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.
Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.
Every Kind of Special Need
These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences.
Welcome Jenny Moo
In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
Epilepsy Foundation– U.S. based online information and resource guide website.
Epilepsy Information Page– from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.
We begin a 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 Back Carol Lippert.
Our first guest to share her parent story is appropriately enough, Carol Lippert, who was my guest on the very first episode of Special Parents Confidential. In that episode we talked about how she created and organized a support group in her community for parents of children with Autism. In this episode she shares her personal story of how she and her husband David are dealing with raising their son, Wyatt, who is autistic.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
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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Recently Gerber Foods announced their first ever “Gerber Baby” who has Down Syndrome. In honor of this great milestone, we are taking a look back at Special Parents Confidential Episode 34.
Down Syndrome. Myths and Facts.
Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about it and how it affects those who have the disorder.
“What We Know” Is Likely Wrong
Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with it is nowhere near as bad as some people believe.
Factual Information.
Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan.
We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.
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. Thanks for your support!
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 or shunned? 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? Many of these social issues in school start early in pre-school and elementary school and can cause a lifetime of stress and problems for parents and children alike.
Social Workers And How They Help.
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. They are also often the ones who work with the parents of other students to facilitate better communication and understanding.
Advice From A Real Elementary School Social Worker
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 vital for every parent of a special needs child, as well as for teachers, special education experts, care givers, and anyone who has a relationship with a special needs kid.
Links Mentioned In This Episode
Shut Up About Your Perfect Kid– The website by the authors of the book. Includes a page with links to where you can purchase a copy of their book.
Driven Story by Jon Singer– The website of the Sibling Support Project, where you can see stories from the book and order a copy.
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!
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!
Having a special needs child always causes tremendous parenting concerns and a lot of work. Many moments can be incredible, exhilarating, and full of amazing wonder. But it can also be extremely stressful. Dealing with schools, social situations, family situations… it can seem like everywhere you turn is another opportunity for more parenting concerns and stress. The other problem is that not everyone understands or even cares about these situations, so many parents can feel isolated in their worries and concerns.
Family Stress
So what can you do to help you deal with all these stresses and keep yourself from coming apart at the seams? Our guest on this episode has some great advice.Jean Holthausis a licensed independent social worker with Pine Rest Christian Mental Health Services in Pella Iowa. She specializes in dealing with anxiety issues, parenting concerns and family issues, and working with special needs children. You’ll also find out about setting boundaries for special needs children, dealing with emotions including anger in children and adults, and how to deal with school anxiety issues. Jean also talks about great resources for parents to access that can help with numerous situations for schools, home, and social situations.
You can help us continue to produce this podcast. Please consider contributing to help continue this podcast. Use the Pay Pal link on our home page to contribute any amount you can. Also be sure to share this episode, and any episode you’ve found helpful with all your favorite social media sites. Use the buttons below to quickly access your favorite sites with our podcast. Thanks for your support!
Mentoring programs for children are some of the most successful social and educational support systems available.
Many experts on child education will tell you that having someone who can mentor, coach, or demonstrate to kids how to do things outside of school and family is vital. Being able to talk to an adult mentor who can help a child with school goals and career choices can make a huge difference for a child’s confidence and outlook. Significant studies over the years have shown that kids who have been helped through mentoring programs are less likely to get into trouble in school, become more confident about their school performance, and get along better with their friends and families.
Now there’s a mentoring organization just for kids with special needs. Project Ready Set Goal, based in Grand Rapids, Michigan, offers mentoring for children with learning disabilities and physical disabilities. They help kids with academic and career guidance, building leadership skills, and help with social issue strategies and learning how to advocate for themselves. And it’s all done for free.
In this episode we talk with Janine Thomas, executive director of Project Ready Set Goal to find out more about the services and help they provide. She talks about their screening process for mentors, gives examples of how mentoring programs can help kids with school, as well as their future life choices. Janine also talks about why she wanted to focus on mentoring for special needs children, and how she hopes that her idea will grow across the country.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics of Down Syndrome, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about Down Syndrome and how it affects those who have the disorder.
Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with Down Syndrome is nowhere near as bad as some people believe.
Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan. They offer a variety of programs and services to help and inform everyone who has interest in Down Syndrome.
We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions about Down Syndrome and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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.
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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.
For parents of special needs children perhaps the most stressful and anxious time is when you are first told that your child has problems. That first diagnosis is such a shock. You don’t know what to do, you don’t know what to think, and you feel completely overwhelmed with it all. One of the most helpful things for parents of special needs children is when they hear stories of other families who have already gone through similar experiences and have shared their story. The challenges and struggles are universal, no matter what the disability or the severity. Just knowing that someone else is out there facing the same worries and fears, and has taken the time to tell that story, can be very reassuring.
In this episode of Special Parents Confidential I’d like to introduce you to just such a parent. In 1970, Donna Kirk, who, with her husband Ed, is from a town near Toronto, Canada, had gone to the hospital for the birth of her first son, Matthew. But problems occurred and their baby had oxygen loss during birth and suffered severe brain damage. The next day their son was transferred to Sick Kids Hospital in Toronto where the doctor there told them that their son was basically, in his words, “a vegetable with a heartbeat”. This doctor advised them to institutionalize their son and have another baby as soon as possible… implying that they should just forget Matthew.
Donna and Ed ignored what the doctor told them and took him home as soon as they could. They fought for him and cared for him throughout his entire life and, in the process, proved that first doctor and many other people wrong about Matthew’s abilities. Ed and Donna had two other children after Matthew, a brother an sister. Matthew died at the age of 40 in 2010, and Donna has written a book called, Finding Matthew, about his life, his challenges, and the struggles that she and her husband went through from his devastating diagnosis to his ultimately successful life and becoming a contributing member to society. The book shows how even the most severely disabled people have incredible gifts and how the family can work together to get through any adversity. It’s definitely a must-read for all parents of special needs children and their families.
Donna’s extraordinary book, Finding Matthewis available on Amazon Books, and you an click either of those links to take you to the page. Donna Kirkalso has a blog site where she posts resource information and updates. Just click on her name and you’ll be re-directed to her site.
As always, a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons on our website. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. We’re also on iTunes and Stitcher as a free subscription, and if you have a moment, feel free to write a review about our podcast. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
When I started this podcast a little over two years ago I was hoping to be able to fill a need for parents or relatives or friends of special needs children and adults. I had no idea how many people would be interested, but I thought there would be ‘some’.
Until now I really had no idea how many people have seen the Special Parents Confidential website, or how many people were listening to the podcast episodes. We don’t have a large number of subscribers on iTunes… this is primarily owing to the fact that the file size for each episode is very large. My crazy insistence on having the sound quality as good as any FM radio station is the cause. Due to these large file sizes, it’s my belief that most of the audience is listening directly on the website rather than downloading the episodes.
Well now I have a better idea of just how many people have been checking out this ‘humble little podcast’. My webmaster guru recently ran a site stat report for me, and I wanted to share some of it here. The report contains large numbers of stats including activity, access, visitors, referrers, browsers, and errors (bots trying to gain access to stuff they’re not supposed to have – don’t worry they didn’t get anything). The numbers are in, and very detailed, so I’ll just post the two most important stats: Since we started in in January of 2013 until April 23 of 2015 (the date the report was generated), Special Parents Confidential has been visited 815,493 times; with 600,882 real people hits and 214,611 spider (bot) hits. More impressively, the total bandwidth usage has been 49.45 GBs. In radio terms, that’s (TSL) Time Spent Listening. This number represents both episode downloads and direct listening time.
Pronouncing the words, “I’m shocked” is a major understatement. I think the phrase, ‘my brain did backflips’ is more appropriate. These are far bigger numbers than I ever expected, or thought possible, given that I haven’t really gone out of my way to promote the site.
To everyone who has visited, listens, and continues to do both, thank you so very much! It’s gratifying to know there are so many more of you than I thought. You have my assurances that I’ll continue to produce episodes that cover subjects you want to know about. You should also know that you have a voice in this process too. Please like our Facebook page or Follow us on Twitter so you can comment directly on each episode (we monitor those the most frequently)*. Also feel free to share episodes and the website on your favorite social media sites.
Thanks!
John
PS- if you’re interested in sponsoring or advertising on our podcast or this website, please use our Contact Page, and I’ll send you a more detailed version of the stat report and we can talk things over.
*We use Facebook and Twitter for podcast comments, rather than a webpage ‘comments section’ in order to reduce spammer advertising.
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!
For many parents one of the challenges in raising a child with special needs is finding the right therapy for your child. Sometimes we get lucky and find the right kind of therapy right near where we live. Unfortunately for some people there’s nothing nearby that can help. Travel can be an option depending on distance, and financial ability. But for many the only option is to simply wait and hope that the therapy will someday come to them.
Then there are those who don’t wait. They decide that they will do what it takes to bring the therapy to their area to help others as well as themselves. Our guest on this episode of Special Parents Confidential is someone who is doing that right now.
Mika Vuto is the mother of a young girl with Down Syndrome. Although there are therapies available in her town of Gainesville, Florida, there was one group she had heard about,Gigi’s Playhouse, that looked like an incredible asset that could help many people… because they offer their services for free. Unfortunately the closestGigi’s Playhousewas in Atlanta, Georgia.
Finally Mika decided to open her own franchise ofGigi’s Playhouse in Gainesville. She talks to us in this episode about her journey from a mom looking for help to a community leader who wants to make a difference for her daughter and many other families with members affected with Down Syndrome. She also talks about the services Gigi’s Playhouse offer to children and parents.
TheGainesville Florida Gigi’s Playhouse is scheduled to open in 2015. You can find out more about them and learn how to make a contribution to help by visiting theirFacebook Page. You can also learn about their progress on theirblog.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
This is one of those subjects that is hardly ever talked about, and yet can have a devastating effect on families. What would you do when your child with special needs is banned from a relative’s home? How would you react? Would you try to resolve the issue? Would you try to please the relatives who won’t tolerate your child’s different behaviors? Or would you react in a different way and turn the tables? Very insightful and well-written blog from a mom ‘who’s been there’, and offers some very sound advice.
The Friendship Circle is a fantastic resource organization for not only parents of special needs children, but for anyone who has any relationship with a special needs child. They were the subject of SPC Episode 13, and we interviewed Rabbi Tzvi Schectman who told us about the mission and the purpose of the Friendship Circle.
In addition to their blog that this article comes from, they also offer many resources including a campus for social help. Find out more by visiting their website and be sure to sign up for their email newsletter to get a daily posting with excellent advice right to your email inbox.
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:
Special Parents Confidential Episode 13 The Friendship Circle
One of the recurring themes we have in our podcasts is how some of the best information and support comes primarily from parents of special needs children. We know what our children need for help and it’s incredible when some parents step forward and create groups and organizations that fill those needs when other avenues are not available.
This is certainly the case with the group we are talking about in this episode.The Friendship Circlewas created by parents and family members of special needs children to help those children find friends and support. They’ve grown in just a few years from a group of a few parents who started bringing their kids together in Detroit, Michigan, to a now nearly world-wide organization. They pair up special needs kids — all children with physical, developmental, or learning disabilities are welcome no matter what the diagnosis — with ‘normal’ or ‘neuro-typical’ kids to be friends and help each other. As it turns out, all of the kids get something incredibly rewarding from the experience.The Friendship Circleoffers sports activities, tutoring, play time, and they even have a mock-village where special needs children can learn life skills like going to the bank, the store, and other social situations that happen in every day life. They also have a phenomenal anti-bullying program, which was created by the parents and the kids called theUpstander Project, that is making an amazing difference in schools across the country.
Our guest for this episode is Rabbi Tzvi Schectman, who is a family coordinator at the Friendship Circle. Most people first encounter The Friendship Circle through the daily emailed newsletter, known asThe Friendship Circle Blog, that Rabbi Schectman compiles. These emails feature articles on many different kinds of information that parents of special needs children can use.
Links mentioned in this podcast:
The Friendship Circle.orgWebsite for The Friendship Circle organization. Learn more about this amazing group.
The Friendship Circle.comFriendship Circle International – to find Friendship Circle programs and groups in locations around North America and the world.
Weinberg VillageThe mock-village facility run by the Friendship Circle.
Upstander ProjectThe anti-bullying program created by The Friendship Circle.
The Friendship Circle BlogThe newsletter from the Friendship Circle with great articles and advice for parents of special needs children. You can subscribe to have the blog sent directly to your email each day.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Religion is an important part of the lives of many people. No matter what your religious beliefs the sense of belonging and community that comes from worship can be a great source of comfort and peace. However being able to attend worship services and learning to fulfill spiritual needs can be a challenge for special needs children. From sensory issues to behavioral problems to feelings of not being accepted many special needs children simply cannot cope with the traditional concepts and behaviors that are considered normal during worship. There can also be problems in religious instruction classes or “Sunday School” (depending on what your faith offers for children) because in many of these classes the instructors are volunteers and don’t always have training in working with special needs children.
How can parents who want their special needs children to participate in their religious traditions find help to work with their clergy to make sure that their special needs children are both accepted and given the help they need to participate and grow in their spiritual needs? How should parents of special needs children approach both their clergy and the lay staff of their place of worship to bring about these goals?
Our guest for this episode has some excellent ideas and advice. The Reverend Mathew Cockrum is an ordained minister in the Unitarian Universalist tradition and was most recently a Chaplain at the University of Michigan Hospitals, and a former Associate Minister at Fountain Street Church in Grand Rapids, MI. He is also now a Transitional Minister at University Unitarian Church in Seattle, WA. He has served as a youth minister and has had a lot of experience in working with families in a wide variety of religious faiths and beliefs. Through these experiences he has some practical advice and great ideas to help families with special needs children find acceptance and fulfillment in their spiritual needs.
Links Mentioned In This Podcast:
There are many websites devoted to this subject, and far too many to narrow down just a few important ones, largely because most religions have their own ideas and methods. As the Reverend Mathew suggests, just do a Google or Bing or Yahoo (or whatever SE you use) search on the words ‘special needs children and religion’ and you’ll find a huge number of articles from all faiths and traditions on how parents and clergy attempt to rectify many of these questions. You can also add in the specific religion that you believe (such as ‘Methodist’ or ‘Catholic’ or ‘Judaism’ or ‘Hinduism’ or which ever is your tradition) to get a more focused answer.
Time goes by quickly when the kids are home instead of being in school. But we wanted to post some updates about what we have coming up in the remaining days of June and in July. We have two podcast episodes recorded and we’ll get them posted in the next couple of weeks.
The next episode, SPC number 11, which we hope to have online very soon, features an interview with the Reverend Mathew Cockrum and we delve into ways in which we can help our special needs children get the best experiences in our places of worship, as well as how to work with ‘Sunday school’ or religious class staff so that our kids can have positive experiences. We also discuss ways to reconcile that sometimes certain religious beliefs can be in conflict with medical or scientific study, and that it is possible to accept both viewpoints, and many other great ideas.
SPC episode number 12, which will be ready after that, is all about education funding. We talk with Elizabeth Welch-Lykins who is an elected official in her local school board, a member of her school district’s legislative committee, and a lawyer. She has experienced the budget crisis in our schools first-hand through having to negotiate cuts in staff and services and she talks in detail about how school districts have had so much trouble and the real reasons why so many of our school districts are in trouble. She also details how budget cuts to public schools are definitely hurting special education programs and the dangers of not paying enough attention to who we vote for in elections.
We have more great interviews planned throughout the summer and into the next school year, so please keep checking back! Better yet, sign up to get an email subscription to our podcasts so you’ll be notified every time we post something new. Just look over to the right column on our home page and enter your email address where it says “Get Podcast Notifications Via Email”. You’ll get automatic updates and we promise we will never give out your email address to anyone else.
Thanks for your support and don’t forget to help spread the word about us!
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.
Parents of special needs children spend most of their time dealing with the present. We tend to think mostly about what our children are doing right now, tomorrow, and maybe next week. If we think of the future, it’s mostly along the lines of, “what is school going to be like for our child next year?” Rarely do we ever consider what our children’s lives will be like ten years from now, fifteen, twenty, beyond. Perhaps because the reality of special needs children is that so much needs to be taken care of in the present, the future can be hard to visualize.
Predicting the future is, of course, impossible, but sometimes it can be helpful to hear from parents who have older children. Those of us whose children have made it into adulthood and are transitioning from schools to colleges, and even into careers. In many cases these parents have not only seen their children’s lives change, but have had their own lives changed in ways they never expected.
Our guest on this episode of Special Parents Confidential has had just such a journey. Stacy Burns has two sons born with Aspberger’s Syndrome. Her oldest, Devin, is now an adult going to college and beginning a career. Stacy talks about Devin’s life from early childhood to the present and also tells us how his disability wound up giving her opportunities that ultimately lead to a new career in a field she never would have imagined. It’s a story of hardships, frustrations, and setbacks, but it’s also a story of achievements, unexpected changes for the better, and success. In other words, it’s a story of a parent, and a great example that even though our children require special help, they can achieve as much as any child.
Organization mentioned in this podcast:
MOKA – Muskegon, Ottawa, Kent, & Allegan: We See The Individual In Everyone. Serving individuals and their families throughout Western Michigan.
YAPSS– Young Adults Project for Service and Socialization of West Michigan.
Probably two of the most misunderstood disorders in the world. There are a lot of ideas about both. Some think they’re not even ‘real’ disorders but rather just fancy medical terms for anything from bad parenting, to ‘watching too much television’, to laziness, to sleep deprivation, to having ‘too much sugar’ in the diet. In keeping with these ideas, the suggested cures for these problems are very simple. Just change the diet to nothing but healthy, organic foods, throw out the television, get plenty of exercise, use herbal supplements, and even introduce meditation as a means to cleanse the mind before sleep.
But are ADD and ADHD really just a diet, discipline, and exercise problem? Or is there something more going on? What does medical science say about ADD and ADHD? Is there a neurological condition associated with ADD and ADHD? Can adults suffer from ADD and ADHD? What about medications? Are they safe? Are they effective? WIll they cause long term problems or addictions?
On this episode of Special Parents Confidential we are joined by Dr. Oren Mason, MD who specializes in the causes and treatments of ADD and ADHD. He shares all of the most current medical and scientific information about ADD and ADHD, and breaks it all down in easy to understand facts. You’ll learn the truth about the causes and the treatments for both disorders. You’ll also discover that Dr. Mason has a very personal reason for his dedication to treating ADD and ADHD. For parents of children with ADD or ADHD, this episode has important information you need to hear.
Websites mentioned in the podcast:
CHADD – Children and Adults With Attention Deficit Hyperactivity Disorder. Resource site for anyone living with ADD and ADHD. Includes credible medical information, and a resource directory for finding help in your area.
Playdates. Guest: Cyndi Blair. Special Parents Confidential Episode 03.
Playdates. Sleep overs. Parties. Extra-cirricular activities. Friends. Many children have active and highly involved social lives. But that’s not always possible for special needs children who have challenges in social situations. Meeting new friends and having lasting friendships can be difficult for kids with special needs. Disabilities and challenges with social skills can sometimes mean a child might not have any friends of their own.
Our guest on this episode had just such a problem with her special needs child not being able to find friends to have playdates or other social activities. Cyndi Blair is a mom from Muskegon, MI, and has a daughter with autism and cerebral palsy. She also has three other children who don’t have disabilities or special needs. Her special needs child noticed that her siblings were always having playdates, sporting events, parties, sleep-overs, and other activities. But her daughter would become upset because she (in her own words) ‘didn’t have any friends of her own’. So Cyndi decided to do something about it.
We talk with Cyndi about the organization she founded, No More Sidelines, and how it not only helped her special needs child find new friends, but is also helping nearly 300 other special needs children. It’s become so successful she wants to take her organization’s concept to other communities and states around the nation.
As we mentioned in the podcast, here’s the No More Sidelines voice mail number that you can call to listen to their events calendar and leave a message: (231) 724-7142.
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