Special Parents Confidential

Lori’s Voice.

We’re introducing you to Lori and Dave Hastings, and their organization, Lori’s Voice. As any parent of a special needs child can tell you, money is one of the biggest challenges. It seems that everything involving your child requires large amounts of money. Medical treatments, therapies, additional equipment, travel expenses, the list can seem endless. The real problem is medical insurance doesn’t always pay for much of these expenses. 

Financial Help In Difficult Times.

Lori’s Voice is a new kind of organization whose sole purpose is to provide funding for those expenses. They get donations and sponsor fundraisers to raise money so that they can help families pay for whatever they need. From their website: “The Purpose of Lori’s Voice is to Provide Equipment, Educational Services, and Medical Assistance to Children With Neuromuscular, Degenerative Diseases, and Mobility Issues.”

They’ve Never Done Anything Like It Before.

Lori and Dave Hastings never ran any kind of a foundation or charity organization before. Yet, they didn’t let that keep them from trying. By founding Lori’s Voice, they’ve been able to help dozens of families. Lori talks about her very personal motivation for getting involved in this work, and how others can start similar organizations. You’ll also learn how you can donate and help. Although Lori’s Voice is located in, and focuses primarily on West Michigan, others can make it happen anywhere.

Links Mentioned In The Podcast

Lori’s Voice Website

Lori’s Voice Facebook Page

Lori’s Voice Twitter Feed

Connect With SPC On Facebook!

A great way to connect with us is through our Facebook page. Use the social media button for Facebook on our website to find us. You can comment on episodes you’ve listened to, and suggest topics for upcoming interviews. Please be sure to help spread the word about Special Parents Confidential by sharing our page in your status.

Thanks for your support!

Ehlers-Danlos Syndromes.

“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” 

The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.

Invisible Special Needs.

Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.

One Family’s EDS Story.

For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school. 

To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler.  There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.

We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly. 

Links Mentioned In The Podcast

The Ehlers-Danlos Society – Excellent website for information and support.

Special Like Me… Madison the Great. The book written about Maddie and her life with EDS.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Military Families.

This episode of Special Parents Confidential is devoted to Military Families with special needs kids. Parents of children with special needs know first hand how challenging any situation can be from starting school, to getting the kinds of medical and therapeutic help their kids need, to just social life in general. Now add to that situation that every year or two you and your family might get uprooted and moved to another State, or even overseas. That’s the life for military families with a special needs child. Can you still get the same services in your next location that you were able to get for your child where you currently reside? What about Medical needs? Language problems? Education supports? Therapies?

Okinawa, Hawaii, Virginia…

Our guest for this episode, Catherine Lochner, has a lot of experience in this area. Neither she or her husband were actually in the military, but the company her husband works for contracts with the military and they lived on bases with other military families, as part of his career requirements. Their son, Cameron, was diagnosed with a rare brain tumor in 2000, and they have had to do everything from flying across the world to get emergency surgery, to dealing with special education services in the Department of Defense’s Education system, and relocating several times while all this was going on. She now works as a special needs and special education advocate in the Commonwealth of Virginia. 

DODEA and Special Education Supports Around The World

Military families have tremendous challenges, even when everything is typical. Having a special needs child in the military is still challenging, but the Department of Defense Education Activity has some excellent supports for those parents. You’ll hear exactly what our military does for families with special needs kids and how things have improved in just the twenty some years since Catherine’s son was born.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Links Mentioned In The Podcast

Military OneSource – Go-To site for 24/7 support for Military Personnel.

 Special Education Parent Handbook Curriculum – Department of Defense Education Activity

DDESS-DODEA – Department of Defense Education Activity – Americas

National Military Family Association – Resources and supports for Military Families

Also be sure to look up special needs support groups such as Parent Training Centers in your area throughout the United States, as well as your local PTA or PTO.

 

Parent Stories 03

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

Every Kind of Special Need

These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get  the best they could and their kids are either on their way toward independence or already there.

The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences. 

Welcome Jenny Moo

In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Helpful Links:

Cerebral Palsy Guide – U.S. based online support group and advocacy site.

Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Epilepsy Foundation – U.S. based online information and resource guide website.

Children’s Healing Center

Every so often you run across an idea that is so perfect, you find yourself wondering why it hadn’t been done before. Such is the case with The Children’s Healing Center, a new play facility in Grand Rapids, MI.

All Kids Want To Play

We all know the importance that play time and activities has for social development. We can talk about statistics and studies on the subject, but as parents we just know kids like to play with each other. But when a child has a disease or a disorder that compromises their immune systems, social activities usually wind up being left out.

Safe Play Areas For Kids With Immune Deficiencies

Now a new concept has come about here in Grand Rapids, Michigan where I live that is making a major difference. The Children’s Healing Center is a special play and social activity center that is completely germ free. It allows kids with cancers, blood diseases, or any other disorders that cause immune deficiencies to still get out and have a chance to play and socialize with other kids who have similar problems.

They offer fun programs and activities in technology, art and learning, fitness, and exploratory play in a seven thousand square foot facility that is as germ free as possible. 

Joining me on this episode of Special Parents Confidential is Amanda Winn, who is the Founder and the Executive Chair of the Children’s Healing Center. We talk about her background and her very personal reason for starting the Children’s Healing Center, as well as what the center offers for kids and families.

Connect With Special Parents Confidential!

Did you know the best way you can keep in touch with me and comment about episodes and other issues you’re interested in is on the Special Parents Confidential Facebook page?  Use the Facebook button below this post to connect with us and share Special Parents Confidential with everyone you know on social media.

Links Mentioned In This Episode:

Children’s Healing Center Home Page 

Amanda Winn Biography  

Children’s Healing Center Facebook Page  

Special Parents Confidential 57 Parent Stories 02

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

We Really Are All In This Together.

Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get  the best they could and their kids are either on their way toward independence or already there.

We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.

Welcome Sandy Carlson

In this episode we hear from Sandy Carlson. She and her husband Steve have three boys, the oldest of which is Harrison, who has autism. Harrison is now in his 20s and has a full time job, but as you’ll hear from Sandy, they didn’t really know anything about what to expect for his future. Not much was known about the future for children with autism, even just 20 years ago, and the improvements that have come since then have made a real difference.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Special Parents Confidential 56 Parent Stories 01

We begin a new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

We Really Are All In This Together.

Well starting with this episode, we’re going to feature parent stories. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get  the best they could and their kids are either on their way toward independence or already there.

We’re giving these episodes the designation, Special Parents Confidential Parent Stories, so that you’ll know that they’re different from the regular episodes. But I think you’ll find yourself learning as much from these stories as you do from our expert interviews.

Welcome Back Carol Lippert.

Our first guest to share her parent story is appropriately enough, Carol Lippert, who was my guest on the very first episode of Special Parents Confidential. In that episode we talked about how she created and organized a support group in her community for parents of children with Autism. In this episode she shares her personal story of how she and her husband David are dealing with raising their son, Wyatt, who is autistic. 

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Collaborative & Proactive Solutions.

In this episode we’re taking a look at Collaborative & Proactive Solutions, which was developed by Dr. Ross Greene and his Foundation, Lives In The Balance. Child behavior problems are always a concern for parents, and sometimes it can seem for parents of special needs kids that the behavior concern is a constant problem.

Punishments and Discipline Don’t Work. 

For as long as anyone can remember, the basic correction method for misbehavior was centered on punishment and discipline. However, that model often fails miserably, and we know this is true, because it’s evidenced by the fact that we have so many prisons full of the results of that failure. So why do we keep enforcing a system that doesn’t work?

Treating Causes Instead of Symptoms.

Over the past few decades a new model of behavior, called Collaborative and Proactive Solutions, or CPS, has been developed with a much greater rate of success. This model was founded by Dr. Ross Greene, who, while on the faculty of Harvard Medical School, began to take a different look at kids with behavior problems. 

Collaborative & Proactive Solutions.

From his organization’s website, Lives In The Balance: The model is based on the premise that challenging behavior occurs when the expectations being placed on a kid exceed the kid’s capacity to respond adaptively, and that some kids are lacking the skills to handle certain demands and expectations. So the emphasis of the model isn’t on kids’ challenging behavior, which is just the manner in which they are expressing the fact that there are expectations they’re having difficulty meeting. Nor does the model focus on psychiatric diagnoses, which are simply categories of challenging behaviors. Rather, the model focuses on identifying the skills the kid is lacking and the expectations he or she is having difficulty meeting.

To tell us more about how the Collaborative and Proactive Solutions model works and why it works, we’re being joined by Kim Hopkins who is the Director of Outreach for the official Collaborative and Proactive Solutions Foundation, Lives In The Balance.

Links Mentioned In The Episode

Lives In The Balance – the Official Foundation of Dr. Ross Greene

Lives In The Balance Facebook Groups 

Lives In The Balance Radio Programs

Please be sure to share this episode with everyone you know. Use the social media buttons below to make sharing easier. Also sign up for our email notices to get new posts and episodes delivered right to your mailbox.

Down Syndrome.

Recently Gerber Foods announced their first ever “Gerber Baby” who has Down Syndrome. In honor of this great milestone, we are taking a look back at Special Parents Confidential Episode 34. 

Down Syndrome. Myths and Facts.

Down Syndrome is one of the most well known of all disorders and disabilities. The common facial characteristics, along with certain physical challenges make the disorder easy to recognize. Yet, for all the familiarity, most people know very little about it and how it affects those who have the disorder.

“What We Know” Is Likely Wrong

Despite many years of progress and improvements in medical research of it’s causes, most of “what we know” about Down Syndrome is rooted in beliefs that are out of date by many decades. Often, parents who’s child has been given a diagnosis are told to expect a very bleak future, with many medical challenges, along with physical and cognitive difficulties for their child. While that can be true to a certain extent, in most cases the future for someone with it is nowhere near as bad as some people believe.

Factual Information.

Fortunately many organizations across the United States, and around the world, have come out to help parents, families, educators, and even the medical community gain a better understanding of Down Syndrome and how it affects those who have it. One such organization is the Down Syndrome Association of West Michigan. 

We’re pleased to interview Meredith Lange, Community Relations Specialist of DSAWM, who talks about the common misconceptions and provides the facts. She also talks about what life is like for children and adults with Down Syndrome and how most of the misunderstandings cause more harm than good. People with Down Syndrome can do well in school, can have successful careers, even becoming business owners and executives.

Links to Websites mentioned in the podcast:

National Down Syndrome Society 

National Down Syndrome Congress 

Down Syndrome Affiliates in Action 

Global Down Syndrome Foundation 

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. 

Thanks for your support!

Vaccine Safety.

In recent months there’s been a resurgence of concerns about vaccine safety. Claims about this year’s flu shot being ‘not as effective’, has given the anti-vax movement new attention. But, as we noted in 2015 when we posted this episode, those claims are nonsense. So here’s a revisit of  SPC episode 22, in which we interview a real expert on vaccine safety.

What Is The Truth?

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

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

Hear From A Real Expert.

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

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

Valid Links.

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

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

U.S. Department of Health Website on Vaccine Safety

Children’...