Tag Archives: Developmental Disabilities

Special Parents Confidential Episode 31 A Sibling’s Perspective

A Sibling’s Perspective.

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.

The Sibling Survival Guide – A “How To” guide to being an adult sibling of a special needs person. 

Growing Up With Ben – The Blog Post that Aubrey wrote about her life and relationship with her special needs brother.

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Traveling For Medical Or Therapy Reasons – Some Tips

Traveling For Medical Or Therapy Reasons – Some Tips.

One of the most concerning dilemmas faced by parents of special needs children is the search for medical specialists. Whether it’s for physical disabilities, developmental disabilities, or learning disabilities, our kids have challenges that sometimes cannot be treated by standard family medical practices.

To complicate matters further, depending on where you live there may not be any specialists who are qualified in your child’s particular need. Furthermore, in some cases, complex issues arise that require a higher degree of specialty in your child’s issue.

The unfortunate fact is for many parents of special needs children, getting the right kind of medical or therapeutic services may require traveling long distances across a state or even several states in order to get the help needed.

We faced this situation a few years back, and after doing a lot of research, we were able to find services that made traveling a lot easier and less stressful.

Car Rentals. 

When making repeated day trips — traveling by vehicle to and from your destination — you might want to consider renting a car instead of putting all the miles and wear on your own vehicle. Here are some tips on car rentals:

Renting a car from an agency that is not located at an airport is usually cheaper. Car rental offices located at airports or transportation hubs charge extra return and usage fees that are typically waived at off-site car rental offices. Car rental agencies usually have a greater number of small to mid-size cars for rent than large sedans, vans or SUVs, so you’ll have an easier time getting the vehicle you want if you can take a small to midsize model.

Most car rental agencies offer unlimited milage in their packages. However, almost all of them have a two to four state restriction on where you can drive the car. For example, if you rent a car in Chicago, you may be restricted to travel only in Illinois, Indiana, Michigan, and Wisconsin (or fewer states). Be certain to ask the rental agent if you need to travel further than your region. The only rental agency we found that has absolutely no restrictions on inter-state travel within the 48 contiguous states is Hertz… however be sure to ask because that may change without notice.

Travel By Air.

When traveling a greater distance than you can drive in one day, you may want to consider air travel. Two great organizations exist to help you make those flights for free.

Air Care Alliance. Air Care Alliance helps to coordinate public benefit flying groups like Angel Flight, Operation Angel Planes, Wings of Hope, and many more. They offer free travel for medical needs on private planes in the United States, as well as international public benefit flight groups. 

Because Air Care Alliance works with private plane owners with all different kinds of aircraft you might fly on anything from a corporate jet to a small four passenger plane, depending on your needs. This service can accommodate small town airports that are not often served by commercial flights. Check out Air Care Alliance’s directory of groups that they work with:          Air Care Alliance Groups Directory

Miracle Flights. Miracle Flights – How We Help Miracle Flights offers free commercial airline travel from frequent flyers who donate their milage awards. They also work with the airlines for accommodations and accessibility for specialized medical needs. Miracle Flights has free travel available on domestic U.S. flights, as well as International flights, and can even help families accommodate service dogs on flights.

Overnight Stays.

Let’s face it, hotels can be expensive and a stay in one for medical or therapy reasons is typically not covered by health insurance plans. Fortunately there are some options that are very affordable and offer great services for special needs children.

The most well known are the Ronald McDonald Houses. Most RMH locations offer accommodations for families of children up to age 18 receiving medical or therapeutic care. The facilities are equipped with all accessible rooms, elevators, indoor play areas, libraries, video game consoles, and other fun areas for kids. Some also have outdoor accessible playgrounds. Rooms vary from two beds and a bathroom, to family rooms with living rooms and dining tables, a kitchen, and one or two bedrooms. Laundry facilities are available and a group kitchen and dining room are also included for all guests. Most RMH facilities also offer transportation services to the hospitals or clinics where you need to go, as well as transportation to local airports, train stations, or bus depots.

Ronald McDonald House facilities typically offer overnight stays for a donation of up to twenty five dollars per night, depending on location and availability, but can work with families on ability to pay with free of charge options. If the RMH you are hoping to stay with does not have a room available for the night you need, they can offer vouchers for greatly reduced rates at nearby hotels of up to seventy five percent off a regular night’s stay, depending on availability. It’s best to call the local RMH near your destination for detailed information and reservations.

Other options: Check with the hospital or clinic that you are traveling to for other recommendations on overnight stays. Some offer hotel style rooms for families right within their facilities. There may also be other accommodation services for family medical stays in the nearby area that they can arrange for you.

Final Thoughts:

Traveling for medical or therapy reasons can be one of the most stressful things a family will go through. Take the time to research where you are going, how to get there, and where you will stay before you go. Ask lots of questions about accommodations, nearby facilities, even information on local grocery and retail stores. Get directions and use internet map services or GPS apps to help you figure out where you will be and how to get around. If you travel without a vehicle, find out about public transportation options and/or taxi services in the city where you are staying.

Get to know the city you’re traveling to with Wikipedia and Wikivoyage (formerly Wikitravel), especially if you’re going to have a stay of a few days or more, so that you will have options for things to do when you have some time to venture out for a break. This will happen. You’ll need a break from time to time… it won’t make you a bad parent to take a little time for yourself. You might also have time to take your child out for a little adventure between therapies or medical treatments. Knowing where to go for fun at those times will definitely help.

Planning ahead and lots of research will help you make the best of a difficult situation and make the experience better for your child.

Click on the link below for a downloadable PDF version of this article.

Traveling For Medical Or Therapy Reasons – Some Tips

Announcement From MI Lt. Governor Brian Calley

Announcement From MI Lt. Governor Brian Calley.

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/mde on 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

Special Parents Confidential Is Now On TuneIn

Special Parents Confidential Is Now On TuneIn. 

We are excited to announce that Special Parents Confidential is now available to access for free subscription on TuneIn.

TuneIn is a free media service featuring over 100,000 online radio stations and 4 million podcasts. Over  Fifty Million people have signed up to use TuneIn as their source for music streaming and online audio content. TuneIn has an app available for Android and Google Play listeners, which means you can use it to access Special Parents Confidential on all Android and Google Play devices.

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We’re working to provide our listeners with the most accessibility to find and listen to episodes of Special Parents Confidential. Joining TuneIn is one more great avenue to find Special Parents Confidential, along with iTunes, Stitcher

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Special Parents Confidential Episode 30 Blind Justice

Blind Justice.

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.
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Special Parents Confidential Episode 29 Sibling Support

Sibling 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.

Links Mentioned In This Podcast

The Sibling Support Project

Sibs UK – Sibling support for the United Kingdom

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.
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Special Parents Confidential Episode 28 The Mighty

The Mighty. 

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.

Mike Porath’s Current Favorite Story On The Mighty

The Mother Who’s Son With Autism Got A Special Invitation To A Party

The Man Who Invented A Font To Help People With Dyslexia

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.
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Special Parents Confidential Episode 26 Parent Problems

Parent Problems

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.

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Special Parents Confidential Is Now On Poddirectory

Special Parents Confidential Is Now On Poddirectory.

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Follow the link to find Special Parents Confidential on Poddirectory by clicking here.

Poddirectory is a quick way to listen and search thousands of podcasts, including Special Parents Confidential. It’s done in a Facebook and Twitter friendly format, which makes searching and playing much easier while using your favorite social media site.  Be sure to repost and retweet our updates whenever you can!

We’re going to keep looking for great places for you to find Special Parents Confidential, and continue to make finding our podcast easier. Thanks for your support!

Special Parents Confidential Episode 25 Early Intervention

Early Intervention.

There’s probably nothing more nerve-wracking and stressful for any parent than the realization that your new baby, your toddler, your child might have some problems. Whether it’s not speaking, not walking, or not engaging socially like other kids, the hardest question many parents face is, what do I do about this?

Of course friends and relatives will tell you, oh it’s alright, that’s just how some boys or some girls are… and they’ll grow out of it. But that’s not always the best advice, and if  your child does have a developmental delay or a learning disorder, they are simply not going to grow out of it. They need help. And then the question becomes, where do I get that help?

Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Barbara Corbin is the Early On Coordinator with the Kent Intermediate School District in Kent County, Michigan.  She handles Early Intervention, and Early Childhood Special Education with school districts. She helps parents get their first diagnosis and coordinates getting help for children right at the very beginning. Thanks to advances in medical research and therapies, children can be diagnosed very early, and Early On programs can start at age two.

Links to websites mentioned in the podcast:

1800EarlyOn Early Intervention information for Michigan, with links to other States. The website name is also their toll free phone number: 1 800 Early On.

The Arc of Kent County Information resource for people with intellectual and developmental delays.

Center For Disease Control (CDC) Page for Parents and Infants This page has the Milestones and Schedules information to track expected progress for infants and toddlers.

Great Starts Collaborative Early Intervention Page Success Starts Early’s webpage on Early Interventions. The entire site is full of helpful information for all parents.

Pathways.org  Free online resource and tools for parents.

The Early Childhood Technical Assistance Center Online resource tools for families of children with special needs.

Michigan Alliance for Families.  Provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services.

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Special Parents Confidential Episode 24 MI Lt. Governor Brian Calley

MI Lt. Governor Brian Calley.

Michigan, like many states, has been working on changes to laws in special education to make sure that the rules are up to date and following the laws that are set down in the Federal Individuals with Disabilities Education Act, or IDEA, which are the main requirements of how special education is to be handled across the United States.

Last December in Lansing, the Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. The Joint Committee was holding a public meeting to take comments from parents back on December 11th, when an unexpected guest stepped forward. 

Michigan’s Lt. Governor, Brian Calley asked that the Committee not approve the proposed changes and take no further action, because he believed that there needed to be more participation from parents in this process. The Committee agreed, and shelved the rules. Since that time, Lt. Governor Calley has embarked on a series of open meetings across the State of Michigan, where he invites parents to talk about their experiences with Special Education in their local districts. He’s also created an online survey for Michigan parents to highlight their experiences, both good and bad, in dealing with Special Education services in their districts.

What the Lt. Governor is doing is an extraordinary step in making sure that parents are more involved in determining special education procedures for their children in the IEP (Individualized Education Plan) process. We are very please to have Michigan Lt. Governor Brian Calley on this episode of Special Parents Confidential to talk about what the changes to the MARSE regulations would have meant, and the personal reasons why he’s made special education in Michigan an important priority.

Links that are mentioned in the podcast: 

Michigan LT. Governor Brian Calley – the official State Website.

Lt Governor Calley’s Online Special Education Survey

The Lt. Governor’s Facebook Page

PR.150610.CalleySpecialEducationSurvey – Press release with detailed explanation of Lt. Governor Calley’s online survey.

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.

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Special Parents Confidential Episode 23 Finding Matthew

Finding Matthew

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 Matthew is available on Amazon Books, and you an click either of those links to take you  to the page. Donna Kirk also 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.

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Special Parents Confidential Episode 22 Vaccine Safety

Vaccine Safety

 In the last 20 years or so we have seen an increase in popularity of an anti-vaccine movement which is based on some very disturbing claims. Primarily among them being that the MMR vaccine, which stands for Measles, Mumps, and Rubella, causes autism. Others claim all manner of health problems can come from vaccinations and that we, as a society, should stop vaccinating our children in any way.

But are those claims valid? Do they have any real scientific proof? For that matter, how safe are vaccines and immunizations? Who makes them? How are they tested? What kind of research, safeguards, and oversight is done before a vaccine is allowed to be used in public? Are they just thrown together in careless disregard by big pharma corporations for big profits, as the anti-vaccine movement claims, or is there a much more scientific and careful approach with regulations and oversight from medical groups, the CDC, and the FDA?

Our guest on this episode of Special Parents Confidential is going to answer a lot of those questions. Mary Wisinski, RN BSN, is the Supervisor of the Immunization Program at the Kent County Health Department, located in Grand Rapids, Michigan, and she has graciously agreed to this interview to provide credible and accurate information. And what she has to say is very important for every parent to hear and understand.

More importantly, Mary answers the one question that the anti-vaccine people have never dared to address: Are there documented cases of children who were not vaccinated, yet still developed autism? Listen to this episode to hear the answer for yourself.

Mary has also supplied a PDF with links to websites that contain accurate, proven, peer-reviewed research that prove the safety and importance of vaccines and immunizations. There is also links to books you can purchase for more information, a toll free number to the Center for Disease Control where you can speak to CDC staff on vaccine safety 24/7, as well as a DVD on vaccine safety.   The website links are listed below and the PDF form link is below them:

American Academy of Pediatrics Immunization Webpage

The Center for Disease Control Vaccine Website

Vaccinate Your Baby – contains a broad array of educational materials and information about vaccines, their safety, vaccine research and science, vaccine misperceptions, and many other topics for clinicians and parents.

Every Child By Two  another site with great information for parents and clinicians.

Immunization Action Coalition and their additional website  Vaccine Information

The U.S. Department of Health Website on Vaccine Safety

Children’s Hospital of Philadelphia (CHOP) Vaccine Information Webpage

Center for Disease Control offers a toll-free number for consumers and healthcare professionals who have questions about immunization and vaccine-preventable diseases. Call (800) CDC-INFO or (800) 232-4636. The Center operates 24/7 in English & Spanish.                   TTY: (888) 232-6348.

Reliable Sources of Immunization Information – Link to downloadable pdf.

Please note, on the PDF form there is a link to a site called the National Network for Immunization Information. That domain has expired and the links are no longer active.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you use. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text.  We’re also on iTunes and Stitcher as a free subscription and if you have a moment, feel free to write a review about our podcast there. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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Special Parents Confidential Episode 21 IEPs and the Law

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

COPPA – Council of Parent Attorneys and Advocates

Wrights Law – Special Education Law and Advocacy

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.

Thanks for your support!

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Special Parents Confidential Episode 20 Health and Wellness

Health and Wellness.

Perhaps no other subject is a greater concern to a parent than the health of their children. Parents of special needs children have an even greater concern because our kids often have disabilities or disorders that require specialized health care options. Some disabilities or disorders like Downs Syndrome can be diagnosed immediately at birth, if not sooner. Others like Autism or Dyslexia may take a few years. However, the one thing all health care professionals can agree on is the earlier you get a diagnosis for your child, the sooner you can get the right treatments and therapies, and that’s better for your child.

But where do you find the experts on your child’s disabilities or disorders, especially if you’re a first time parent and don’t yet have a family doctor or pediatrician? Often, a child can have more than one special need challenge, which can make medical decisions even harder. 

One place that offers a wide variety of services from medical checkups and advice to doctor referrals to support groups and beyond is your local county or city Health Department. Most Health Departments have a person or a group of people who support parents of special needs children with counseling, advice, and education. They can help you with ongoing support, including finding early on or early intervention programs with your local school district to get your child into special education programs that are the right fit for their challenges.

In this episode of Special Parents Confidential, John talks to Chris Buczek, RN BSN, who is the Public Health Program supervisor for Children’s Special Health Care Services of the Kent County Health Department in Grand Rapids Michigan. She also supervises the Hearing and Vision Screening Program for the Health Department, and runs a support group for parents of special needs children. And, as you’ll find out, she has a personal reason for her involvement in Special Health Services.

During the interview Chris talks about a number of websites for resources. The following are the links to those sites:

MDCH Children’s Special Health Care Services   

MI Family Center for Children and Youth with Special Health Care Needs

US DHHS HRSA Maternal and Child Health

CDC Parent Information Infants & Toddlers

CDC Important Milestones For Infants

NCMHI Children and Youth with Special Health Care Needs

American Academy of Pediatrics Bright Futures 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 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.

Thanks for your support!

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The Numbers Are In!

The Numbers Are In!

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.

Special Parents Confidential Episode 18 Living With Dyslexia

Special Parents Confidential Episode 18 Living With Dyslexia

Dyslexia is possibly the single most mis-understood of all disabilities. People who don’t have it think that those who do see misspelled words, or letters out of order, or even that they read backwards. But none of that is actually true. People with Dyslexia can recognize letters and words, and even sentences. The real problem is the comprehension component of reading is diminished, or in some cases not there at all.

New research has shown that there is a specific area in the brain that causes Dyslexia and the hope is that new treatments may come from that discovery. But those treatments are still a long way off and in the mean time many children and adults are continuing to struggle. Added to this is the fact that as of right now, March of 2015, only 24 states in America recognize Dyslexia as a learning disability and have specific treatment protocols for school districts to follow. That means that over half of the school age children in the United States who have Dyslexia are not getting the right kind of help, if they’re getting any help at all.

One of the aspects of children with special needs that many people don’t understand is that a child can have more than one specific disorder. A child may have ADHD, Asperger’s Syndrome, Autism, or Downs Syndrome, and also have Dyslexia. But if the main disorder is more prevalent, the Dyslexia may not be recognized or even noticed without a more intensive diagnosis.

Dyslexia is the best known of these disorders, and causes problems with reading comprehension. There is also Dysgraphia, which causes problems with handwriting, and Dyscalculia, which causes problems in mathematics comprehension. Over the next series of podcasts, we’re going to take a closer look at Dyslexia and the related learning disorders to try to get a better understanding of the causes and the treatments.

To begin, I wanted to get a better idea of what it’s like to have Dyslexia and how it affects the ability to read and learn. Fortunately a friend of ours is willing to talk about her challenges. Elizabeth D’Aurora is a third grade elementary school teacher in West Michigan and she has Dyslexia. She talks about some of the problems and difficulties she had in school. As an educator she also discusses treatments and therapies for Dyslexics and their effectiveness. As you’ll learn in this podcast, there is no ‘cure’ for Dyslexia. No one “overcomes Dyslexia”; instead the person learns ways to cope and strategies for learning that can help them in school and beyond.

For more information on Dyslexia and related learning disorders visit Understood.org.

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

Thanks for your support!

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New Episodes Coming Soon

New Episodes Coming Soon.

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!

Thank you for your support!

John

Special Parents Confidential 17 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 Wilcox is the co-owner of Hope Educational Consulting, LLC a 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.

* Note: first paragraph attribution to Wikipedia article on IDEA, Individuals with Disabilities Education Act. For more information on IDEA, visit http://idea.ed.gov

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.

Thanks for your support!

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Special Parents Confidential Episode 16 Gigi’s Playhouse Part 1

Special Parents Confidential Episode 16 Gigi’s Playhouse

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 closest Gigi’s Playhouse was in Atlanta, Georgia.

Finally Mika decided to open her own franchise of Gigi’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.

The Gainesville 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 their Facebook Page. You can also learn about their progress on their blog.

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.

Thanks for your support!

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SPC One Year Anniversary

SPC Studio

SPC One Year Anniversary.

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!

1. Carol Lippert – Support Groups

2. Dan Blauw – Legal Issues

3. Cyndi Blair – Playdates

4. Dr. Oren Mason – ADD/ADHD

5. Kindy Segovia – Assistive Technology

6. Kathy Holkeboer – Special Education Advocacy

7. Stacy Burns – One Parent’s Journey

8. Chris Kenward – Social Issues In School

9. Julie Wiseman – Deafness and Hearing Impairment

10. Paula Lancaster – Special Education

11. Rev. Mathew Cockrum – Special Needs and Spiritual Needs

12. Elizabeth Welch-Lykens – School Funding and Special Education

13. Rabbi Tzvi Schectman – The Friendship Circle

14. Gabriella McCall Delgado – We Connect Now

15. Conny Raaymakers – Applied Behavior Analysis

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:

A huge   T H A N K   Y O U !!!!

Special Parents Confidential Episode 15 Applied Behavior Analysis. ABA.

Applied Behavior Analysis. ABA.

Applied Behavior Analysis or ABA is a term parents of special needs children hear a lot in schools, doctors offices, therapy centers, and just about anywhere our kids interact with people. Studies have shown that ABA can be used to help children as early as 18 months learn to cope with everything from social settings to the educational environment. ABA has been proven to be successful especially for children with autism and can be used to help kids with other disabilities and disorders.

In this episode John talks with Conny Raaymakers, who is director of ABA serves at Developmental Enhancement Behavioral Health, a group that specializes in using ABA for the treatment of autistic children. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist.  She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up  the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.

UPDATED LINKS 10/02/2017

Developmental Enhancement Behavioral Health

Conny Raaymakers Profile Page

Email: craaymakers@debh.org 

Association for Behavior Analysis International

 

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.

Thanks for listening!

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Special Parents Confidential Episode 14 We Connect Now

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 called We Connect Now. Her site has been visited by over 175,000 people from all over the United States and 137 other countries. We Connect Now is 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 using We 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 start We 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.

Links mentioned in this podcast:

We Connect Now Facebook Page

We Connect Now on Twitter

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.

Thanks for your support!

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Deciding Who Sees Students’ Data – New York Times Article

Deciding Who Sees Students’ Data. New York Times Article.

Privacy issues are becoming more and more prevalent in almost all aspects of our lives. Now we’re starting to see concerns over the way schools are keeping and storing the private data of their students. For a parent of any student this raises issues but especially for parents of special needs children who’s private records can include medical records such as their diagnosis, therapy information and prescription medications and much more personal information.

This article from the New York Times is a must read for parents and educators. While there can be benefits to utilizing cloud-based data storage, there can also be many concerns over security and potential theft of records.  Deciding who sees students’ data is an issue that should include parents, teachers, school administration, and the school board, not just a few people. While no system may be truly perfect, this is issue far too important to be simply made without real investigation and research.

Deciding Who Sees Students’ Data – New York Times Article

Special Parents Confidential Episode 13 The Friendship Circle

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 Circle was 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 Circle offers 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 the Upstander 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 as The 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.org  Website for The Friendship Circle organization. Learn more about this amazing group.

The Friendship Circle.com Friendship Circle International – to find Friendship Circle programs and groups in locations around North America and the world.

Weinberg Village The mock-village facility run by the Friendship Circle.

Upstander Project The anti-bullying program created by The Friendship Circle.

The Friendship Circle Blog The 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.

Thanks for your support!

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We’re Back – With A Request

We’re Back With A Request.

Hello!

We’ve had a short hiatus to attend to last minute end of summer trips, the usual back-to-school necessities, and other family needs. We’ll be posting a new podcast episode soon and start doing more interviews in the coming weeks.

We also have a request for you.

In a couple of previous episodes we’ve discussed whether charter schools are a viable option for education and whether or not charter schools are able or willing to adopt special education standards and practices for our special needs children. Many experts have debated this issue but there is one group that we’ve noticed who have not been heard from: parents.

Do you have a child with special needs who is enrolled in a charter school?  If so, we want to hear from you! We’d like to interview a few parents about their experiences with special education in charter schools, good or bad or whatever.  You’ll be able to keep your personal information private and even remain anonymous if you prefer. Our goal is to get feedback from parents as to whether or not charter schools are meeting the needs of their special needs children and if they are indeed a viable option for educating special needs kids.

If you’re interested in talking to us, or if you just want to email us some comments that we can use in an upcoming episode, please use the form on our Contact Us page and let us know how to contact you. We do not share our email list with anyone so your information will be kept private. Thanks for helping and hope to hear from you soon!

PS- if you do not have special needs children in charter schools but know someone who does, please forward this blog post to them, or use the Social Media sharing buttons below to help get out the word. Thanks for your support!

Important Legislation Update: H. R. 5.

Important Legislation Update: H. R. 5.

We received an email from the National Center for Learning Disabilities requesting immediate action on a bill that’s coming up in the House of Representatives. This is an urgent and important issue for every parent of a special needs child to act on.

The House is scheduled to vote in the next day or two on a ‘reform’ bill (H. R. 5.) to the Elementary and Secondary Education Act (ESEA), known as ‘No Child Left Behind’. While the ESEA needs reform, this new bill, H. R. 5. makes the act even worse because it removes all the accountability provisions in ESEA and allows students, as early as third grade, who need extra support to instead be removed from the high school diploma track and not receive a regular diploma. Can you imagine a child at age 8 or 9 being told that they will not be allowed to graduate with a high school diploma based on their current skills in third grade? That’s what might happen if H. R. 5. is allowed to pass.

Please follow this link to the page on why the NCLD opposes H. R. 5 for more information. At the bottom of the page there is a link to a form that makes it easy for you to quickly email your Congressional representative to tell them to vote no on H. R. 5.

Please act today, Wednesday 7/17/13, because the vote on H. R. 5. could come as quickly as tomorrow 7/18/13. Then share this page with everyone you know on social media. You can use the quick share buttons right below this article to easily make this happen.

Thanks for your help!

Special Parents Confidential Episode 12 – School Funding and Special Education

School Funding and Special Education.

For years we’ve been hearing that our public education system is in trouble. Budget cuts, mis-managed funding, over-paid staff, millions and millions of dollars wasted. Many people want to do away with public education. Their argument is that charter schools and private schools are the better choice. But what about special education? Where does special education fall in all of these budget problems and funding cutbacks?

Some parents and even some school advocates believe that special education is ‘protected’. That it is fully funded and will never be cut or eliminated. But is that true? Can special education or any kind of assistance for special needs children be cut or eliminated? Certainly the budgets for those teachers and assistants who work with special needs students have been cut. Could entire programs be eliminated? And if so, what kinds of special needs assistance or special education help are Charter Schools and Private Schools required to offer? You might be surprised and even shocked to learn what those schools are and are not required to provide.

Our guest for this episode has the answers to many of those questions and a lot more information on the nation-wide public education funding situation. Elizabeth Welch-Lykens is a labor law attorney in Grand Rapids, Michigan and is an elected board member of her local school district, as well as a member of the district’s legislative committee that meets with state representatives in Lansing. She has first-hand knowledge of dealing with school district budget problems, and has spent time on these very issues. While some of what she talks about involves issues in Michigan, the fact is many states and school districts nation-wide are facing the exact same problems. And as Elizabeth verifies, these nation-wide education funding problems are not a coincidence, they are part of a planned effort to privatize the entire national education system for the benefit of a few corporate profiteers. This is an interview that every parent with kids in school, not just parents of special needs children, should hear.

Links mentioned in this podcast: 

For national based information on the school funding crisis visit Dianne Ravitch‘s blog site. She is a former assistant secretary of education under President George H. W. Bush, and a highly respected advocate of public education. Her site contains a lot of facts and information that disproves many of the theories claimed by those who want to shut down public education.

For information about what’s going on in the State of Michigan as well as local Michigan school districts, visit Michigan Parents For Schools. 

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.

Thanks for your support!

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Special Parents Confidential 11. Spiritual Needs and Special Needs

Spiritual Needs and Special Needs.

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.

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Empaths on the Autism Spectrum – Autism and Empathy

Empaths on the Autism Spectrum – Autism and Empathy.

Please note, the original link provided in this posting is no longer active. I have found updated links, which can be found below. Sorry for the inconvenience.  – John.

We’ve often heard that people with Autism lack social empathy. That people with autism have no emotional connections to others and lack the ability to have compassion. 

However, new research has proven that this belief is nothing more than a myth. 

The Same As Everyone Else.

The study, Divergent Roles of Autistic and Alexithymic Traits in Utilitarian Moral Judgments in Adults with Autism , was published in Nature, the Journal of Scientific Reports in March of 2016. From the Discussion section of the report, “Therefore, we maintain that the current findings hint at non-verbal intelligence as a compensatory strategy that high-functioning autistics rely on while endorsing moral choices that are in line with prevalent socio-moral norms.”

Also worth noting is the finding that people with ASD were more averse to causing harm to others, even if the decisions would produce better results.

Easier To Read Summaries.

The report itself is very clinical in it’s writing style and may be difficult to read fully. There are some excellent summaries about the findings, which I have linked below.

It is important that this information be shared on social media to counter the incorrect stereotypes that have been prevalent over the past decades. People with ASD are exactly the same emotionally as those who are considered ‘normal’.

We May Have Been Wrong About Autism And Empathy – HuffPost Summary

People with Autism Can Read Emotions, Feel Empathy – Scientific American

A Look Inside Children’s Minds – New Study from UI.

A very informative and interesting study is being done at the University of Iowa that shows how 3 and 4 year old children retain what they see around them.

Using an older technology that isn’t as invasive or difficult as an MRI, the researchers have been able to monitor how a child’s brain functions when memorizing. The researchers can now see neurological activity and brain development in children.

From the article: “The research is important, because visual working memory performance has been linked to a variety of childhood disorders, including attention-deficit/hyperactivity disorder (ADHD), autism, developmental coordination disorder as well as affecting children born prematurely. The goal is to use the new brain imaging technique to detect these disorders before they manifest themselves in children’s behavior later on.”

This study is helping to emphasize the importance of early intervention.

Read the full article here: Iowa Now – A Look Inside Children’s Minds

To easily share this article with your friends, click one of the ‘share’ buttons below.

Updates For June and July

Updates For June and July.

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!

 

How To Know When Someone Is In Trouble When Swimming

How To Know When Someone Is In Trouble When Swimming.

Article: How To Know When Someone Is In Trouble In The Water

Thanks to Slate.com for this well-written article about safety in the water. Drowning victims don’t look like they’re drowning. With summertime swimming activity increasing, and since special needs children sometimes need extra help in the water, it’s important to know how to spot someone who is in trouble. Especially if you’re paying extra attention to your special needs child but you have other children in the water as well.

Read the article and learn the signs. Drowning victims DO NOT look like drowning victims! They almost never splash wildly or call for help. Most people don’t realize someone is in trouble until it’s too late.  Learn about drowning and water safety. Please be sure to share this article with family and friends.

Have a great and safe summer!  

How To Know When Someone Is In Trouble In The Water

Special Parents Confidential 10 Special Education

Special Education.

In this episode we take a look at the world of Special Education. What exactly is Special Education? How do teachers become Special Education teachers? How and why has the concept of Special Education changed over the years from isolation and institutionalization to mainstreaming and inclusion, and has it worked? How do researchers determine what works and what doesn’t work? And are the current budget problems that so many state governments face affecting Special Education in our schools?

Our guest for this episode has answers to all of those questions and many other questions. Paula Lancaster is a Professor of Special Education and the Chair of the Special Education, Foundations, and Technology Department at Grand Valley State University in West Michigan. We talked about a wide range of issues including the questions above, as well as discussing some of the major misconceptions about Special Education; the differences in how Special Education is handled by public schools, charter schools, and private schools; how Special Education changes from elementary school to middle school, to high school, and college; to the importance of special needs children learning to advocate for themselves; how to make sure that the information you’re finding is proven to work versus a marketing scam; and a lot more. This is one of the longest episodes of Special Parents Confidential that we’ve recorded, but Paula shares some very important information that you and everyone who is interested in Special Education need to know.

Links Mentioned In The Podcast: 

What Works Clearinghouse – The Institute of Education Sciences. Providing educators (parents can use it too) with the information they need to make evidence based decisions.

LD Online – Learning Disabilities Online. The world’s leading website on learning disabilities and ADHD.

Council For Exceptional Children – The Voice and Vision of Special Education. Excellent resource site.

National Dissemination Center For Children With Disabilities – Another excellent resource website. Provides easy-to-read information on children with disabilities from infants to early 20s.

Note:  Paula’s advice on researching information: Whenever you encounter a site that you’re not certain whether the info is credible, scroll down to the bottom (or check ‘about us’ info), and find out who is responsible for the website content.

The Self-Advocacy Strategy – Paula and Sean Lancaster’s software package that teaches children the strategies of negotiation and self-advocacy. Great for all kids, not just special needs children.

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Special Parents Confidential 09 Deafness and Hearing Impairment

Deafness and Hearing Impairment.

Everyone at some point in their lives experiences some form of hearing loss, either from their environment or due to advanced age. However many children are born every year with deafness or hearing impairments.

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

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

Links Mentioned In This Episode: 

PASE – Parent Advisors for Special Education (Kent Intermediate School District, Kent County, MI)

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

Hearing Loss Association of America – Grand Rapids Chapter

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

Hands & Voices – Resource website for everyone.

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

Guide By Your Side Michigan – State of Michigan Chapter.

Gallaudet University 

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

Signing Time

Alexander Graham Bell Association

Cochlear Implant Manufacturers (and their associations):

Advanced Bionics

Cochlear America

Med-El

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Special Parents Confidential 08 Social Issues In School

Social Issues In School

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.

Links Mentioned In The Podcast: 

Shut Up About Your Perfect Kid  The website from the authors of the book.

Shut Up About Your Perfect Kid link to the book’s listing for sale on Amazon

Driven Story – Jon Singer – This is the website of the author of the book, “The Special Needs Parent Handbook”, which you can find on this page.

Views From Our Shoes – The website of the Sibling Support Project, where you can see stories from the book and order a copy.

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Special Parents Confidential 07 One Parent’s Journey

One Parent’s Journey

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.

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Special Parents Confidential 06 Special Education Advocacy

Special Education Advocacy.

As parents of special needs children we hope that our kids will have every opportunity to get a good education, and get assistance when they need it in school. Special Education has changed over the past couple of decades. Special needs children are spending more time in mainstream classrooms and spending only limited time out of the class with their special education teachers for whatever assistance they need.

But what exactly is Special Education? We know that our kids are supposed to get help. Where can we get good advice or assistance when facing the task of getting the educational help for our special needs children? Do we have to see a lawyer? Can we just expect the school to handle it properly? What are the standards? What’s an “IEP” (Individual Education Program), what’s a “504”, and what kind of educational help can we even reasonably expect our children to have in the first place?

Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Kathy Holkeboer is a Special Education Advocate in West Michigan. Advocates for Special Education work with families on understanding what kinds of educational assistance their special needs children are entitled to have, based on need.  They can even go with the parents to meet with school officials to put the special education plan in place for each school year.

Links To Websites Mentioned In This Podcast

Pacer Center The National Parent Training and Information Center for children with disabilities. They offer publications, workshops, and other resources to help parents make decisions about education, vocational training, employment, and other services for children with special needs.

Parent Technical Assistance Center Network Directory of regional (State by State) special education advocacy centers for parents of special needs children.

Michigan Alliance for Families Special Education Advocacy for families in Michigan. Note: for non- Michigan residents, you can search similar websites for your state in the PTAC directory.

Wright’s Law Special Education Law and Advocacy, created by two lawyers, Peter and Pam Wright (husband and wife), providing legal assistance and information for parents of special needs children.

Contact Information for Kathy Holkeboer – (note: Kathy is a special education advocate in the State of Michigan, and works primarily in the West Michigan region. Residents of other States or regions in Michigan should consult the PTAC directory for Special Ed Advocates in their area). Holkeboer Advocacy -Facebook page.  Kathy’s phone #: (616) 218-2395.

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Autism Is Not A Disability

Autism Is Not A Disability Article From The Baltimore Sun, by John P. Hussman.

Our friend (and first episode guest) Carol Lippert, shared this very interesting article that was published in the Baltimore Sun on April 10th, and written by a parent of a 19 year old boy with autism.

The article has some eye-opening perspectives for people about what a ‘disability’ really means. It’s definitely worth sharing with your friends and family, especially those who may not fully understand what autism means.

For that matter, you could apply the same perspective of this article toward virtually every other disability that people may have.

Autism Is Not A Disability, by John P. Hussman, published in the Baltimore Sun, April 10th, 2013.

April Is Autism Awareness Month

April is Autism Awareness Month. Autism is a medical term for a large umbrella of brain disorders encompassing a wide range of disability from very mild high functioning to severely disabled.  Some or all of the areas shown below can be affected in different ways. Autism is a genetic neurological condition that you are born with, and is not the result of bad parenting, diet, overstimulation, or any other outside influences. Learn more at the Autism Speaks website.

brain_autism

This graphic comes from Iain Carstairs blog: Science and Religion, in an article entitled Atheism and Autism. It’s a fascinating read, and you can find a much larger version of  this graphic in the article (this was the best I could pull off).

Special Parents Confidential 05 Assistive Technology

Assistive Technology. Not so long ago ‘Assistive Technology’ meant a typewriter, special pencil grips, or maybe a cassette tape recorder.

Today, parents of special needs children are constantly being bombarded with new ideas, devices, software programs, and apps that say they can help with our children’s learning disabilities, developmental disabilities, and even physical disabilities. There are more choices for Assistive Technology than ever – nearly a million or more Apps at the time we write this – and more on the way.

For parents of special needs children, as well as special education teachers, the biggest challenge is how do you sort out all the available choices, how do you know which ones will work best for which situation, and how do you implement these technologies in the classroom and in your home?

Our guest for this podcast has some answers. Kindy Segovia is the Assistive Technology Coordinator for the Kent Intermediate School District of West Michigan. She’s worked with Assistive Technology for over 20 years and today works with educators and parents in making the right choices on Assistive Technology for nearly every child who needs it. She has some valuable information for anyone who wants to know more about Assistive Technology and how to use it to the best potential.

Links that Kindy mentions in the podcast:

The Family Center on Technology and Disability. The FCTD web site provides thousands of assistive and instructional technology resources of interest to families of children with disabilities.

Michigan’s Integrated Technology Supports. Michigan’s Assistive Technology Project.

You can find other technology support programs for other States here: Assistive Tech Net.

Able Data is a website that can help you find the assistive technology you need.

Kindy’s Assistive Technology Website through the Kent Intermediate School District.

And you can email Kindy at kindysegovia@kentisd.org to join her Assistive Technology email list, and the iPad Tidbit email list.

 

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Special Parents Confidential 04 ADD ADHD

ADD ADHD. Attention Deficit Disorder. Attention Deficit Hyperactivity Disorder.

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.

Attention MD – Dr. Mason’s practice based in Grand Rapids, MI. Also find links to purchase his book, “Reaching For A New Potential“.

Special Parents Confidential

Special Parents Confidential

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Special Parents Confidential 03 Playdates

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.

Special Parents Confidential

Special Parents Confidential

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Special Parents Confidential 02 Legal Issues

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.

Links mentioned in the podcast:

Blauw Kirkpatrick Law, PLC

National Academy of Elder Law Attorneys

Special Needs Alliance

National Disability Rights Network

Special Parents Confidential

Special Parents Confidential

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Special Parents Confidential 01 Support Groups

Support Groups – Guest: Carol Lippert. Special Parents Confidential Episode 01

For our first episode of Special Parents Confidential we talk about support groups for parents. Our guest has some valuable information, especially if you’re not apart of a support group right now. Why are support groups important?

If you have access to support groups in your area, you know they can be a great resource for parents of special needs children. Being able to talk with other parents of children who have similar challenges as your own children can open up avenues of information that you might otherwise not have available. But what can you do if there aren’t any support groups where you live?

Our guest for this interview, Carol Lippert, was confronted with that situation when she and her family moved to Grand Rapids, MI from Los Angeles. Her oldest son has autism and there were no support groups for parent of autistic kids. So she started her own support group. She talks about how she did it and what you can do if you are in a similar situation.

Can you start your own support group for parents whose children have similar issues as your own? How do you find members? Where can you hold meetings? Will there be start up expenses or can you run your support group for free? Are there laws covering support groups? Do you have to have a tax-free exemption, like a charity? Do you have to have any special training to run a support group? Do you have to have special insurance or other legal protections like a business? Do these meetings need to have formal recognition from your city, county, state, or the federal government, or can they be just an informal group of friends getting together?

We have the answers for you.

Special Parents Confidential

Special Parents Confidential

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