“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.
We Really Are All In This Together.
Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to getthe best they could and their kids are either on their way toward independence or already there.
We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.
Welcome Sandy Carlson
In this episode we hear from Sandy Carlson. She and her husband Steve have three boys, the oldest of which is Harrison, who has autism. Harrison is now in his 20s and has a full time job, but as you’ll hear from Sandy, they didn’t really know anything about what to expect for his future. Not much was known about the future for children with autism, even just 20 years ago, and the improvements that have come since then have made a real difference.
Connect With Us On Facebook!
A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.
Bullying and social problems in school are a continuing problem. While improvements have been made in how some school districts handle these issues, the problem is still unaddressed in many cities, towns, and states. So we’re reposting SPC Episode 53, in which we learned about the ‘be nice’ campaign.
be nice.
A new program called the ‘be nice’ campaign has been started in West Michigan to help end bullying. One of the hardest issues to deal with for parents of special needs kids – as well as parents of any child – is bullying in schools and online. What do you do if your child is the victim of bullying? For that matter, what do you do if you discover your child is bullying other children?How far does bullying affect a child? What kinds of impact does this have on a child’s mental health?
Learn About Mental Health.
Did you know that problems with bullying are the leading cause of suicide in children and teenagers? Bullying can also cause issues of depression, drug abuse, and other mental health problems that can affect people for their entire lives.
In this episode we’re going to talk to an expert in the subject of bullying. Christy Buck is the executive director of the Mental Health Foundation of West Michigan, and they have a new program that offers a solution. It’s called the ‘be nice’ campaign and it’s designed to to help kids, families, schools, and communities work to understand and end bullying. We’ll also learn about mental illnesses, how to recognize when problems escalate to thoughts of suicide and what to do in these situations.
We also talk about the common myths and stigmas associated with bullying, depression, and mental health issues that can cause problems for kids as well as adults. For example, a person doesn’t need to ‘bottom out’ before they should get help. We discuss ways to overcome these myths and stigmas. You’ll also learn how the ‘be nice’ campaign can be used by your school or other organizations.
National Suicide Prevention Hotline: 1-800-273-8255.
Reminder
Please share Special Parents Confidential with all your favorite social media sites. Use the buttons below to easily repost this episode and any other episode you found helpful. Thanks!
We’ve decided to start off the new year by reposting what I think is one of the most inspiring interviews I’ve done. Michigan Supreme Court Justice Richard Bernstein.
Blind Justice
In November of 2014 Richard Bernstein became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.
Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.
Special Education Advocate
However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”
Improving, Not Cutting, Special Education Support.
In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
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 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!
A new program called the ‘be nice’ campaign has been started in West Michigan to help end bullying. One of the hardest issues to deal with for parents of special needs kids – as well as parents of any child – is bullying in schools and online. What do you do if your child is the victim of bullying? For that matter, what do you do if you discover your child is bullying other children?How far does bullying affect a child? What kinds of impact does this have on a child’s mental health?
Learn About Mental Health.
Did you know that problems with bullying are the leading cause of suicide in children and teenagers? Bullying can also cause issues of depression, drug abuse, and other mental health problems that can affect people for their entire lives.
In this episode we’re going to talk to an expert in the subject of bullying. Christy Buck is the executive director of the Mental Health Foundation of West Michigan, and they have a new program that offers a solution. It’s called the ‘be nice’ campaign and it’s designed to to help kids, families, schools, and communities work to understand and end bullying. We’ll also learn about mental illnesses, how to recognize when problems escalate to thoughts of suicide and what to do in these situations.
We also talk about the common myths and stigmas associated with bullying, depression, and mental health issues that can cause problems for kids as well as adults. For example, a person doesn’t need to ‘bottom out’ before they should get help. We discuss ways to overcome these myths and stigmas. You’ll also learn how the ‘be nice’ campaign can be used by your school or other organizations.
National Suicide Prevention Hotline: 1-800-273-8255.
Reminder
Please share Special Parents Confidential with all your favorite social media sites. Use the buttons below to easily repost this episode and any other episode you found helpful. Thanks!
It’s IEP Season and we’re revisiting past episodes on the Individualized Education Plan. Find out what you can do when schools say ‘no’.
Special Parents Confidential Episode 17 When Schools Say ‘No’.
In 1990 Congress passed IDEA, or Individuals with Disabilities Education Act, which entitles each student with a disability to a free appropriate public education (FAPE) to meet his or her unique needs. Originally titled Education for All Handicapped Children Act of 1975 (EAHCA), it was based on Congress’ finding that the millions of children with disabilities had educational needs which were not being met due to a lack of services and inappropriate public school placement. IDEA set down guidelines for how schools and states were to implement special education procedures.
Unfortunately, there is a wide disparity across states as to how those guidelines should be implemented, or even interpreted. Similarly, school districts can even have differing standards for services they offer in special education. Simply put, IDEA allowed States and schools a lot of leeway in special education implementation, based on numerous issues including need, population, local economic factors, and other considerations.
The problem for parents is, this leeway in the implementation of procedures can sometimes allow States and school districts to restrict or even deny extra help for students who don’t fit the exact definition of a particular disability or learning disorder. School Districts and States are also cutting certain aspects of special education support from Education budgets as cost-saving measures. While districts and States aren’t outright eliminating Special Education, they do cut budgets for support programs, assistant teachers or para-pros who help in the classrooms, and other accommodations. The result is many parents are finding out that their children will perhaps get minimal help (the least allowed under regulations), but more often than not they hear the word ‘no’ when asking for additional help or support for their child.
So what can you do when your school or State says ‘no’?
Our guest in this episode has some answers.Suzanne Wilcoxis the co-owner ofHope Educational Consulting, LLCa special education advocacy service based in Ohio and Michigan. She is also the mother of four children, two of whom needed special education support in school. She explains how IDEA works, and how schools and states interpret those regulations. She also explains how ‘best practices’ can sometimes be overlooked due to budgeting, or availability issues.
During the time when she and her family lived in Ohio, she and her partners were instrumental in creating and passing legislation that allowed Ohio to become one of the first States in the country to recognize Dyslexia as a learning disability, and implemented official regulations on the kinds of therapies schools must offer to help students with Dyslexia. She has worked with parents, teachers, school districts, and legislators on numerous issues with special education.
Suzanne offers some great advice and information that all parents of special needs children need to know. Please feel free to share this episode with everyone you know who has a child with special needs or works with children who have special needs.
Revisiting Episode 21 Special Parents Confidential IEP And The Law.
It’s IEP Season and we are Revisiting Episode 21 Special Parents Confidential IEPS And The Law.
Individualized Education Plans. IEPs for short. Possibly one of the most stressful times for parents of special needs children. IEP meetings are those annual events when parents meet with schools to plan out the kinds of help and services their special needs children are going to receive for the next school year.
IEP meetings are very long, sometimes taking two hours or more, and usually filled with terminology that can sometimes be overwhelming. Parents are expected to understand a huge amount of information and make decisions on what kind of educational support their child will receive in the next grade year. The problem is for many of us, we don’t even know how our kids are going to do from week to week, much less three or four months later, after the entire summer break.
Typically the schools bring in the teacher, the special education teacher, any school therapists, the school social worker, and the Principal or Vice Principal of the school. Sometimes the school or district psychologist will attend, sometimes the district’s Director of Special Education will also attend. There can be as many as ten to fifteen people representing the school in these meetings. It is very easy for parents to feel ‘ganged up on’ or intimidated, especially when there is often only one or two parents in the room.
This is where Attorney Advocates can help. Lawyers who work in special education advocacy and mediation are trained in all areas of special education law. They can be the parent’s voice in the room and they know exactly what the laws are in what the school should be doing for your child and whether your concerns are being addressed.
Our guest on this episode of Special Parents Confidential is Attorney Randi Rothberg who’s firm, Thivierge & Rothberg is a Special Education Law Firm based in New York City. She and her partner, Christina Thivierge focus exclusively on representing families of children with special needs, including attending IEP meetings, mediation, Due Process, and, when necessary, litigation in the State and/or Federal Courts. She talks about some of the problems that can arise when parents face an IEP meeting, how to prepare for those meetings, what to watch out for when you’re faced with things you don’t agree with in an IEP, and how to look for an advocate in your area. Randi also does advocacy work for issues of bullying in schools and discusses addressing those situations.
LEGAL DISCLAIMER:
Some of the legal issues Randi discusses are general, however some points, such as the “Parent Member in IEP meetings” are specific to New York State and may not apply in your State, or Country. Please consult a Special Education and Disability Law Attorney or Special Education Advocate in your area for complete information on your State laws and your rights.
Here are the links mentioned in the podcast:
Thivierge & Rothberg PC– Representing children and adolescents with disabilities in New York & New Jersey
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.
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Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.
Not A Symptom of Something Else.
For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder. And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.
SPD Parent Zone.
My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.
If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.
If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have a Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!
In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.
Living With Aspberger’s Syndrome
As a child, Alix Generous was misdiagnosed with the wrong disorder and had a great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.
At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.
Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.
She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:
“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”
For many parents of special needs kids, special education rights continue to be the main cause of concern and worry. Are our kids being given the right accommodations in school? Are the schools being held accountable for special education services, and who is supposed to be checking to see if they are?
Further, with a push in this country to seriously consider doing away with public schools and instead moving into privatizing the public education system into a for-profit model, where does this leave special education and what rights will parents of special needs kids have if it happens?
What Are Your Education Rights?
Back in October of 2016, I attended a rally for Special Education that was held in Lansing, Michigan. Among the speakers at the rally was our guest for this episode, Kristen Totten. She is an education attorney with the American Civil Liberties Union of Michigan (ACLUMich). Kristen spoke at the rally about the special education rights that the ACLU is working on to help our kids. I asked her to be a guest on the podcast and she agreed.
For this episode we talked about the current state of special education rights in Michigan and across the United States, how some states, like Michigan, allow Charter Schools to reject special education students even though they are required to accept them, and what parents can do to get involved to make sure the education rights of their children are being met.
Update: A Major Victory.
One of the issues we addressed in the podcast is the work that the ACLU of Michigan has done along with Lt. Governor Brian Calley in eliminating the use of restraints and isolation on children in schools. And I’m pleased to be able to say that within 24 hours of our interview being recorded, the Michigan State Senate passed the bill that ends the use of those in all schools.
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Also be sure to sign up for our email list. We have news and articles coming up next year that won’t always get mentioned in the podcast episodes, but if you are on our email list, you’ll get that information delivered right to your inbox (along with each new episode when it’s posted online).
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.
Back in June of 2015, we interviewed Michigan Lt. Governor Brian Calley about his concerns on special education, and his efforts to provide better inclusion for parents in the education process. You can listen to that interview by clicking Special Parents Confidential Episode 24
Today we received the following email update from Lt. Governor Calley:
Good afternoon,
There is no doubt that educating a child with Special Education needs has its own unique challenges for parents and educators. It is important that we work to ensure Michigan’s system is the finest it can be to serve students and parents safely, openly and constructively. For months, I have traveled across Michigan to listen to parents and requested feedback via an online survey. I have made nine listening tour stops to date and heard from nearly 2,000 parents online.
Now it is time for the next step. On Tuesday, September 8, I will be providing testimony before the state Board of Education regarding what I have heard and learned during this process and how we can all work together to make necessary improvements. The meeting will be at 11:30 a.m., at the John A. Hannah Building, Fourth Floor, 608 West Allegan Street in Lansing. Please feel free to attend if you’re available. The Department of Education also will be livestreaming the meeting. The link will be available at www.michigan.gov/mdeon Tuesday morning.
I have appreciated the input I received from many of you in person and online. Now it’s time to harness all of our efforts and work together to improve special education in Michigan for everyone.
Sincerely,
Lt. Gov. Brian Calley
*****************
This is the final part of an extraordinary effort on the part of our Lieutenant Governor to help improve Special Education in Michigan. For the full details on why he is making this happen, take a listen to our interview in Episode 24.
Be sure to view the live-stream coverage of the meeting on Tuesday September 8th at 11:30 am. Use this link to see it live: www.michigan.gov/mde
We are excited to announce that Special Parents Confidential is now available to access for free subscription on TuneIn.
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Our guest for this episode of Special Parents Confidential is Michigan Supreme Court Justice Richard Bernstein. In November of 2014 he became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.
Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.
However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”
In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood.
The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.
How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.
In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.
The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources
The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher and Poddirectory as a free subscription, and if you have a moment, please write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts. Thanks for your support!
Once in a while you come across a website that is just so compelling, so useful, and so helpful that you have to share it with everyone you know.
Thirty million people have done that with The Mighty.
After finding out that his daughter had a rare genetic disorder, and his son was born with a health challenge, the founder of The Mighty, Mike Porath, decided to build a website where people could share their emotional struggles and help each other.As he says in his own article on why he started The Mighty,“Stories that inspire people – that can change the path of someone’s day, as my wife says – are a great start, but we are going after much more. Ultimately we want to improve the lives of people facing disease, disorder and disability.”
The Mighty started out as a site where parents of special needs children can vent their frustrations, post their triumphs, and share with each other their experiences. They’ve grown beyond special needs to health challenges, and even posts written by people with special needs and health challenges who offer their own unique perspectives.
In this episode we talk to Mike Porath about The Mighty and how he brought the website together. He also talks about where he hopes to see The Mighty go in the coming years, and what he wants the site to become. It’s a fascinating story and a fascinating interview with a real visionary who just started off by asking a question: “What can we do about this?”
Below are some links to various articles on The Mighty that were mentioned in the podcast.
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!
Individualized Education Plans. IEPs for short. Possibly one of the most stressful times for parents of special needs children. IEP meetings are those annual events when parents meet with schools to plan out the kinds of help and services their special needs children are going to receive for the next school year.
IEP meetings are very long, sometimes taking two hours or more, and usually filled with terminology that can sometimes be overwhelming. Parents are expected to understand a huge amount of information and make decisions on what kind of educational support their child will receive in the next grade year. The problem is for many of us, we don’t even know how our kids are going to do from week to week, much less three or four months later, after the entire summer break.
Typically the schools bring in the teacher, the special education teacher, any school therapists, the school social worker, and the Principal or Vice Principal of the school. Sometimes the school or district psychologist will attend, sometimes the district’s Director of Special Education will also attend. There can be as many as ten to fifteen people representing the school in these meetings. It is very easy for parents to feel ‘ganged up on’ or intimidated, especially when there is often only one or two parents in the room.
This is where Attorney Advocates can help. Lawyers who work in special education advocacy and mediation are trained in all areas of special education law. They can be the parent’s voice in the room and they know exactly what the laws are in what the school should be doing for your child and whether your concerns are being addressed.
Our guest on this episode of Special Parents Confidential is Attorney Randi Rothberg who’s firm, Thivierge & Rothberg is a Special Education Law Firm based in New York City. She and her partner, Christina Thivierge focus exclusively on representing families of children with special needs, including attending IEP meetings, mediation, Due Process, and, when necessary, litigation in the State and/or Federal Courts. She talks about some of the problems that can arise when parents face an IEP meeting, how to prepare for those meetings, what to watch out for when you’re faced with things you don’t agree with in an IEP, and how to look for an advocate in your area. Randi also does advocacy work for issues of bullying in schools and discusses addressing those situations.
LEGAL DISCLAIMER:
Some of the legal issues Randi discusses are general, however some points, such as the “Parent Member in IEP meetings” are specific to New York State and may not apply in your State, or Country. Please consult a Special Education and Disability Law Attorney or Special Education Advocate in your area for complete information on your State laws and your rights.
Here are the links mentioned in the podcast:
Thivierge & Rothberg PC– Representing children and adolescents with disabilities in New York & New Jersey
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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:
Special Parents Confidential Episode 14 We Connect Now
When it comes to educating our kids with special needs we as parents tend to focus primarily on the here and now, especially if our kids are younger. But what will life be like for our kids when they get older and go into college and then the workplace? What kinds of challenges will they face? What help or resources are available?
Our guest for this episode of Special Parents Confidential is able to offer a lot of information on that very subject. Gabriela McCall Delgado has a learning disability and in 2008 while she was a freshman at Louisiana State University she decided to create a website resource for other college students with disabilities calledWe Connect Now. Her site has been visited by over 175,000 people from all over the United States and 137 other countries. We Connect Nowis online forum about college and university life for students with physical disabilities and learning disabilities where they can share their stories and information. And as those students graduate and move into employment they’re usingWe Connect Now to share stories and information about the job world and successes or problems they encounter there.
Gabriela talks about the challenges she faced in college as well as transitioning into a career and why she decided to startWe Connect Now.She also talks about some of the other stories that people have shared on her site and what resources are available for students with special needs as they go into college and the workplace. This is vital information for any parent who are looking at getting their kids into college and jobs.
Email Gabriela at We Connect Now: weconnectnow2008@gmail.com
As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, or any of the other sites like Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, and others. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes and Stitcher and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Special Parents Confidential Episode 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.
Legal Issues. Guest: Dan Blauw. Special Parents Confidential Episode 02.
How much do you know about legal issues, the law, and how they apply to your special needs child? Parents of special needs children sometimes aren’t aware of all the various legal issues that can affect the life of their child. Understanding your rights and your child’s rights is important. But where can you get good information on legal issues?
Our guest for this episode is Attorney Dan Blauw who’s legal firm, Blauw Kirkpatrick Law, PLC, based in Grand Rapids, Michigan, specializes in legal issues for people with disabilities, special needs, and their parents. He talks about the various laws that exist to help parents of special needs children. He also clears up many misconceptions that people have regarding their rights and the rights of their special needs children.
Do you need to have a special will or trust if you have a child with disabilities or special needs? Can you specify how and where your child or children will live after you’re gone? How will your child’s economic future be handled when they become adults? Do you expect someone in your family to take care of your special needs child if you are not able to do so due to illness or death?
Disclaimer: Dan Blauw is an Attorney in the State of Michigan. Most of his answers, while general in their information, may still be specific to Michigan law. If you are not a resident of Michigan, please consult an attorney in your state who specializes in disability law to make sure you have the right information for your state.
