Tag Archives: Assistive Technology

Special Parents Confidential 64 5p Syndrome aka Cri du Chat

5p Syndrome aka Cri du Chat.

Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.

Defying Expectations.

But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.

Loving You Big 

Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.

Links mentioned in the podcast:

Leah’s 3 favorite posts from her blog:

The Irony of Language.  

Yes My Hands Are Full.

Welcome To The World, Baby Girl.

Video of Leah and her husband Zac, and their daughter Jordan.

Resources:

5p Minus Society. 

The Danger of a Single Story – Ted Talk by Chimamanda Ngozi Adichie.  

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Special Parents Confidential Episode 62 Lori’s Voice

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!

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Special Parents Confidential 59 Parent Stories 03

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.

Epilepsy Information Page – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Head Cooling May Help Babies With Brain Damage – Article from WebMD.

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Special Parents Confidential Episode 57 Parent Stories 02

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.

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Down Syndrome – Revisiting Special Parents Confidential Episode 34

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. 
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Michigan Supreme Court Justice Richard Bernstein – SPC Episode 30

Michigan Supreme Court Justice Richard Bernstein

We’ve decided to start off the new year by reposting what I think is one of the most inspiring interviews I’ve done. Michigan Supreme Court Justice Richard Bernstein.

Blind Justice

In November of 2014 Richard Bernstein became the first blind attorney to be elected as a Justice to the Michigan Supreme Court. Or as he likes to say, “Blind Justice is now on the Michigan Supreme Court”.

Justice Bernstein was born blind and has risen far beyond whatever boundaries or limitations anyone could have imagined. He successfully sued against the Law School Admissions Council for the right to be admitted to law school, arguing that the LSAC test was visually biased due to their use of charts and graphs in the test. As a practicing attorney, he was a strong advocate for the rights of disabled people and special education. He’s also a marathon runner and has completed an Ironman Triathlon.

Special Education Advocate

However, he holds no illusions over how he was able to achieve so much. In his own words: “85% of the blind community is unemployed… If I hadn’t been born into the family I was born to, where I was so blessed to have the resources and opportunities and I was given the absolute best of everything, If I hadn’t been born into an affluent family, what I would honestly tell you is, that there’s no question that I would be part of that eighty-five percent of the unemployment rate. Because there’s really no difference between myself, and any other person with a disability… So I think that when you ask the question, ‘what are the biggest challenges that are currently impacting people with disabilities’, I would really venture to say that it’s primarily socio-economic.”

Improving, Not Cutting, Special Education Support.

In this episode he shares his thoughts on special education, disability laws and rights, and his ideas on the progress we’ve made as a society in dealing with individuals with disabilities. Take a listen to more of the thinking of one of the most amazing and inspiring people we’ve ever had the honor to interview. Michigan Supreme Court Justice Richard Bernstein.

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

Links To Follow:

Richard Bernstein Profile On Michigan Courts Page

Justice Richard Bernstein Profile In Wikipedia

Justice Richard Bernstein Facebook Page

Profile Article on Justice Richard Bernstein In The Detroit News

 

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Deafness and Hearing Impairment – Revisiting SPC Episode 09

Deafness and Hearing Impairment.

Deafness and Hearing Impairment are now very well understood, and once diagnosed, can be successfully managed. 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 impairment.

Technology Improvements.

Although many therapies and technologies exist to help correct deafness and hearing impairment, the same questions and issues still come up for parents of deaf and 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?

A Parent Who’s Been There.

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: 

New – Reviews.Com: The Best Hearing Aids of 2017 – a comprehensive review of the best over-the-counter hearing aids that are available right now.

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

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 every state.

Gallaudet University – The premier institution of learning, teaching and research for deaf and hard-of-hearing students.

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

Alexander Graham Bell Association – Support and information for parents of children with deafness or hearing impairment.

Cochlear Implant Manufacturers (and their associations):

Advanced Bionics 

Cochlear America 

Med-El 

 

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A Sibling’s Perspective – Revisiting SPC Episode 31

A Sibling’s Perspective.

The Holidays always mean family visits, and with that in mind, we thought our episode on a sibling’s perspective would be a good one to repost. This episode is from October of 2015, when we interviewed Aubrey Boerma, who grew up with an older brother who has Autism.

What’s it like growing up with a special needs sibling? Do you have feelings of being ignored by your parents? Do you worry about how your special needs sibling will be treated by society or your friends in particular? Are you frustrated over how often you have to explain why your special needs sibling “acts like that”? 

As hard as it is to be a parent of a special needs child, it can also be just as hard to be a sibling of one. From having to attend numerous medical or therapy appointments, to missing out on school events or social events, many siblings feel like their lives have to take second place to the lives of the special needs child. Even into adulthood, some people carry resentments and anger over their relationships with their special needs siblings. 

There Are Answers.

In this episode of Special Parents Confidential, we talk to Aubrey Boerma, who has a brother with special needs. She also works with sibling youth support groups, helping child siblings learn to cope with their special needs brothers or sisters. Aubrey talks about how not all sibling relationships have to be difficult. For many people, having a sibling with special needs can be an incredible experience. You learn to be a much more patient and tolerant person with great empathy for all kinds of situations. Many siblings of special needs children, including Aubrey, say that their brother or sister are the best thing that happened to them. She also has suggestions for parents on how to help siblings talk about their relationships and their feelings toward their special needs brother or sister.

Links To Websites Mentioned In This Podcast:

The Sibling Support Project – Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns. 

Sibling Leadership Network – Providing siblings of individuals with disabilities the information, support, and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.

The 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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Special Parents Confidential 51 Michigan Alliance For Families

Michigan Alliance For Families.

Find out how the Michigan Alliance For Families, and other similar organizations around the United States can help you negotiate special education services for free.

What Is The Michigan Alliance For Families?

Trying to get help with the special education process can be very difficult, and potentially expensive. There are dozens of advocacy service businesses and legal firms that specialize in handling IEPS for families. There are hundreds of books you can buy. Seminars you can attend. Personal counseling services. The list goes on.

But did you know that some of the best help for negotiating special education services is available for free from your own State government? Every State in America has what’s known as Parent Information and Training Centers that offer help in everything from early intervention, to writing an IEP, to legal support, transitioning issues, and beyond.

Free Is A Nice Price.

Here in Michigan, the Parent Center is called the Michigan Alliance For Families. They offer parent-mentors… these are parents of special needs children… who have been trained to coach other parents to work with schools and get the help that their children need.

Our guest for this episode is Kelly Orginski, who is the executive director of the Michigan Alliance For Families. She explains how the Michigan Alliance came together, how the parent-mentors are trained and work with families, and how they can help. She also talks about what parents can do to help themselves with the negotiations, and where to find help from similar organizations in other States.

Links Mentioned In This Podcast

Michigan Alliance For Families 

Center For Parent Information and Resources – National parent information center site.

Find Your Parent Center – Directory from the Parent Information and Resources website that links to all State Parent Information Centers.

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Early Intervention – Revisiting Special Parents Confidential Episode 25

Early Intervention – Revisiting Special Parents Confidential Episode 25.

It’s IEP Season and we’re looking back on older episodes that deal with Individualized Education Plans. Early Intervention is one of the first terms that parents hear when they are trying to find help for their children. We talk to an early intervention coordinator to learn about the process.

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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Revisiting Special Parents Confidential Episode 06 Special Education Advocacy

Revisiting Special Parents Confidential Episode 06 Special Education Advocacy.

It’s IEP Season and we’re revisiting older episodes that offered information to help with the IEP process. Today we’re Revisiting Special Parents Confidential 06 Special Education Advocacy. Learn about the role of the Special Education Advocate and how they help parents negotiate the Individualized Education Plan, as well as the 504 Special Education Plan, and what the difference is between these two options.

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.

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Revisiting Special Parents Confidential Episode 10 Special Education

Revisiting Special Parents Confidential Episode 10 Special Education.

It’s IEP Season, and we’re revisiting some of our older episodes that have information that will help you with the process. In this episode, we find out what Special Education is all about.

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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Revisiting Special Parents Confidential Episode 17 When Schools Say ‘No’.

Revisiting Episode 17 When Schools Say ‘No’.

It’s IEP Season and we’re revisiting past episodes on the Individualized Education Plan. Find out what you can do when schools say ‘no’.

Special Parents Confidential Episode 17 When Schools Say ‘No’.

In 1990 Congress passed IDEA, or Individuals with Disabilities Education Act, which entitles each student with a disability to a free appropriate public education (FAPE) to meet his or her unique needs. Originally titled Education for All Handicapped Children Act of 1975 (EAHCA), it was based on Congress’ finding that the millions of children with disabilities had educational needs which were not being met due to a lack of services and inappropriate public school placement. IDEA set down guidelines for how schools and states were to implement special education procedures.

Unfortunately, there is a wide disparity across states as to how those guidelines should be implemented, or even interpreted. Similarly, school districts can even have differing standards for services they offer in special education. Simply put, IDEA allowed States and schools a lot of leeway in special education implementation, based on numerous issues including need, population, local economic factors, and other considerations.

The problem for parents is, this leeway in the implementation of procedures can sometimes allow States and school districts to restrict or even deny extra help for students who don’t fit the exact definition of a particular disability or learning disorder. School Districts and States are also cutting certain aspects of special education support from Education budgets as cost-saving measures. While districts and States aren’t outright eliminating Special Education, they do cut budgets for support programs, assistant teachers or para-pros who help in the classrooms, and other accommodations. The result is many parents are finding out that their children will perhaps get minimal help (the least allowed under regulations), but more often than not they hear the word ‘no’ when asking for additional help or support for their child.

So what can you do when your school or State says ‘no’?

Our guest in this episode has some answers. Suzanne 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

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Revisiting Episode 21 Special Parents Confidential IEP And The Law

Revisiting Episode 21 Special Parents Confidential IEP And The Law.

It’s IEP Season and we are Revisiting Episode 21 Special Parents Confidential IEPS And The Law.

Individualized Education Plans. IEPs for short. Possibly one of the most stressful times for parents of special needs children. IEP meetings are those annual events when parents meet with schools to plan out the kinds of help and services their special needs children are going to receive for the next school year.

IEP meetings are very long, sometimes taking two hours or more, and usually filled with terminology that can sometimes be overwhelming. Parents are expected to understand a huge amount of information and make decisions on what kind of educational support their child will receive in the next grade year. The problem is for many of us, we don’t even know how our kids are going to do from week to week, much less three or four months later, after the entire summer break.

Typically the schools bring in the teacher, the special education teacher, any school therapists, the school social worker, and the Principal or Vice Principal of the school. Sometimes the school or district psychologist will attend, sometimes the district’s Director of Special Education will also attend. There can be as many as ten to fifteen people representing the school in these meetings. It is very easy for parents to feel ‘ganged up on’ or intimidated, especially when there is often only one or two parents in the room.

This is where Attorney Advocates can help. Lawyers who work in special education advocacy and mediation are trained in all areas of special education law. They can be the parent’s voice in the room and they know exactly what the laws are in what the school should be doing for your child and whether your concerns are being addressed.

Our guest on this episode of Special Parents Confidential is Attorney Randi Rothberg who’s firm, Thivierge & Rothberg is a Special Education Law Firm based in New York City. She and her partner, Christina Thivierge focus exclusively on representing families of children with special needs, including attending IEP meetings, mediation, Due Process, and, when necessary, litigation in the State and/or Federal Courts. She talks about some of the problems that can arise when parents face an IEP meeting, how to prepare for those meetings, what to watch out for when you’re faced with things you don’t agree with in an IEP, and how to look for an advocate in your area. Randi also does advocacy work for issues of bullying in schools and discusses addressing those situations.

LEGAL DISCLAIMER:

Some of the legal issues Randi discusses are general, however some points, such as the “Parent Member in IEP meetings” are specific to New York State and may not apply in your State, or Country. Please consult a Special Education and Disability Law Attorney or Special Education Advocate in your area for complete information on your State laws and your rights.

Here are the links mentioned in the podcast:

Thivierge & Rothberg PC – Representing children and adolescents with disabilities in New York & New Jersey

COPPA – Council of Parent Attorneys and Advocates

Wrights Law – Special Education Law and Advocacy

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Special Parents Confidential 46 Sensory Processing Disorder

Sensory Processing Disorder.

Virtually everyone has heard of sensory overload, and sensory issues. People who have problems with loud noises, large crowded areas, tastes, textures, strong smells, bright lights, the list goes on.

Not A Symptom of Something Else.

For decades sensory issues were simply considered a side-effect of whatever the more prevalent disorder was inhibiting the child, whether Autism Spectrum Disorder, ADHD, Dyslexia, Multiple Sclerosis, and other disorders. However medical research has proven that this is a separate disorder, called Sensory Processing Disorder.  And there is now a push to have it recognized by the Diagnostic and Statistical Manual of Mental Disorders – known as DSM – which is the official medical reference for physicians.

SPD Parent Zone.

My guest for this episode has first hand knowledge of Sensory Processing Disorder. Kelly Jurecko is the President and Co-Founder of SPD Parent Zone, a non-profit organization that offers a website that is full of reliable and credible information on Sensory Processing Disorder. She also hosts a blog and a podcast on the site where she posts articles and interviews experts on SPD and keeps people updated on the latest information.

If your child is having any kind of sensory issues, SPD Parent Zone is a website you need to bookmark and search.

Links Mentioned In The Episode.

SPD Parent Zone

SPD Parent Zone Podcast on iTunes

SPD Foundation – The Star Institute For Sensory Processing Disorder

The Sensory Processing Disorder Resource Center

Support Special Parents Confidential.

If you find this episode helpful, and if you have found other episodes on this site to be helpful as well, please consider investing in supporting Special Parents Confidential. We have a Pay Pal account linked on our home page on the right side below our logo. Or you can click on the “Support SPC” link on our page directory at the top of the site. Any amount you can contribute to help us continue these podcasts is greatly appreciated!

Thanks for listening.

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Special Parents Confidential 45 Soledad O’Brien

Soledad O’Brien Interview.

A few months ago, while in a doctor’s office for a checkup, reading the usual magazines, my wife happened to see an article about Soledad O’Brien. She talked about her son Jackson, who was having issues in school with behavior and not understanding instructions from the teacher. Finally, Jackson was diagnosed with 80% hearing loss and is now receiving special support help in school. The interview detailed much of the work that Soledad does, not only for her own children’s education, but also her charity, The Starfish Foundation, which helps support education for middle to low income girls in school.

The article inspired us to get in contact with Soledad’s production company to ask if she would be willing to talk about some of the work she does and the issues that matter to her most about education and special education in America, and around the world. We’re pleased to say that she graciously agreed and this is episode is the resulting interview.

A Great Advocate For Education

As you listen to hear speak, it’s clear that Soledad O’Brien is not only a great advocate for education, but she stresses the importance of all parents being involved in their children’s education, whether the child is in special education or general ed. She is also passionate about the need for proper funding for public education and special education. As she says in the interview, “…the amount of money that it takes to keep people in prison could pay for them to go to Harvard.”

Links Mentioned In The Podcast

The Interview With Soledad O’Brien In Health Magazine (online at WebMD).

Starfish Media Group – Soledad O’Brien’s Production Company

The Starfish Foundation – The education charity founded by Soledad O’Brien and her husband, Brad Raymond.

Matter of Fact. New in-depth interview program produced and hosted by Soledad O’Brien.

Reminder

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Special Parents Confidential 44 Alix Generous

Alix Generous.

In 2015, a young woman named Alix Generous gave a Ted Talk speech that has subsequently had over 14 million views. The speech was entitled, “How I learned to communicate my inner life with Aspberger’s”, and in it Alix talks about her amazing life and how she has achieved so much.

Living With Aspberger’s Syndrome

As a child, Alix Generous was misdiagnosed with the wrong disorder and had a  great deal of difficulties. It wasn’t until the age of 11 that she was finally correctly diagnosed with Aspberger’s Syndrome, a high functioning form of Autism. Since then she has made amazing progress.

At 17, she attended the College of Charleston, where she studied Psychology, Molecular Biology, and Neuroscience. When she was 19, she wrote a paper on Coral Reefs and Microbiology that won the 2012 Citizen Science Biodiversity Competition, and she subsequently was invited to speak at the United Nations on her research. Currently, Alix is working as a Neuroscientist, author, and tech consultant, and she gives speeches around the world on issues concerning science, mental health, STEM (Science Technology Engineering and Math) and women.

Alix Generous joins us on Skype for this episode of Special Parents Confidential to talk about her life and her work, as well as sharing insights into how people with Autism can be helped and supported.

She also discusses how parents, families, and society can benefit through understanding and acceptance of people with Autism and Aspberger’s Syndrome, as well as all people with any physical or developmental disabilities. As she says on the main page of her website:

“This world is in desperate need of creative and intellectual minds to solve complex problems. But before we can do that, we need to build a culture that accepts mental diversity.”

Links For Alix Generous

How I Learned to Communicate My Inner Life With Aspberger’s – Alix Generous’ Ted Talk Speech on the Ted Talk website.

Alix Generous Website 

Facebook Alix Generous Page

Twitter Account for Alix Generous

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Special Parents Confidential 42 Understanding Learning Disorders Part 2

Understanding Learning Disorders Part 2.

ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.

This Episode Is Part Two.

My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.

Dr. John McCaskill, of McCaskill Family Services in the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.

Dyslexia, Dysgraphia, Dyscalculia and Other Learning Disorders.

In this episode, Dr. McCaskill talks about Dyslexia, Dysgraphia, Dyscalculia, and other learning disorders. He breaks down exactly what each disorder is, how it affects those who have it, and what kinds of treatments and therapies can help. He also discusses how to advocate for your special needs child with schools to make sure the school is offering not just the appropriate help, but the correct kinds of help; how families need to ensure that they are also supporting kids with special needs the right way at home; and how parents can make sure they are finding the right kinds of therapies and treatments for their kids outside of school. 

As always, please share this episode with everyone you know. Just use the social media buttons at the bottom of this posting.

Further Information.

McCaskill Family Services Located in the Detroit, Michigan Area.

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Special Parents Confidential 41 Understanding Learning Disorders Part 1

Understanding Learning Disorders Part 1.

ADD. ADHD. Dyslexia. Dysgraphia. Dyscalculia. Understanding learning disorders might be one of the most difficult challenges any parent can face. We’ve known about these disorders for centuries, and the medical names for them have been in place for decades. But there’s still a lot of misinformation and incorrect beliefs when it comes to learning disorders. And these incorrect beliefs can cause a lifetime of needless problems for those who have learning disorders.

This Episode Is Part One.

My guest for these episodes has such a large amount of information and research to share that the interview I recorded with him took over two and a half hours. I had to split the interview into two episodes because if I had tried to post the original recording in it’s entirety, the file size exceeds the limit that my web hosting service allows.

Dr. John McCaskill, of McCaskill Family Services in the Detroit, MI area, is a clinical psychologist who specializes in learning disorders. He’s spent years researching the causes and the affects of learning disorders, and has done extensive work in finding the right solutions and therapies. The one thing he makes clear is that so much of what we think we know about learning disorders is incorrect or misleading. Dr. McCaskill fully explains his methods of research and breaks down exactly how learning disorders affect those who have them.

Learning Differently.

In this first part of the interview, Dr. McCaskill discusses the many misconceptions and incorrect beliefs about learning disorders. People with learning disorders are not lazy. They’re not deliberately refusing to learn. They have, according to Dr. McCaskill, ‘glitches in the brain’ that causes them to learn differently, and given the correct methods, they can be educated just as successfully as those who don’t have those issues. He also goes into great detail about ADD and ADHD, what Attention Deficit Hyperactive Disorder is, and just as importantly, what it is not.

As I say in my introduction to this episode, what you’re about to hear is nothing short of a master class in learning disorders. 

Of course please be sure to share this episode with everyone you know. Just use the social media buttons at the bottom of this posting.

Further Information:

McCaskill Family Services, located in the Detroit Michigan Metro Area.

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Special Parents Confidential Episode 36 Mentoring Programs

Mentoring Programs

Mentoring programs for children are some of the most successful social and educational support systems available. 

Many experts on child education will tell you that having someone who can mentor, coach, or demonstrate to kids how to do things outside of school and family is vital. Being able to talk to an adult mentor who can help a child with school goals and career choices can make a huge difference for a child’s confidence and outlook. Significant studies over the years have shown that kids who have been helped through mentoring programs are less likely to get into trouble in school, become more confident about their school performance, and get along better with their friends and families.

Now there’s a mentoring organization just for kids with special needs. Project Ready Set Goal , based in Grand Rapids, Michigan, offers mentoring for children with learning disabilities and physical disabilities. They help kids with academic and career guidance, building leadership skills, and help with social issue strategies and learning how to advocate for themselves. And it’s all done for free.

In this episode we talk with Janine Thomas, executive director of Project Ready Set Goal to find out more about the services and help they provide. She talks about their screening process for mentors, gives examples of how mentoring programs can help kids with school, as well as their future life choices.  Janine also talks about why she wanted to focus on mentoring for special needs children, and how she hopes that her idea will grow across the country.

As always a reminder that if you like this episode of Special Parents Confidential or any episode we’ve done, please share our site with your friends, family, and all your connections on social media. You can do this easily with the social media buttons located right below this paragraph. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
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Special Parents Confidential Episode 34 Down Syndrome

Down Syndrome. Myths and Facts.

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

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

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

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

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. Like us on Facebook, follow us on Twitter, add us on Google Plus, Tumbler, Linked In, Pintrest, Stumble Upon, Reddit, or other social media sites that you prefer. You can also sign up for our email service and have new posts and podcast episodes delivered right to your inbox the moment they’re available online. That form is located to the right of this text. We’re also on iTunes, Stitcher, TuneIN, and Poddirectory as a free subscription and if you have a moment, feel free to write a review about our podcast on either of those sites. Anything you can do to help spread the word about Special Parents Confidential will help us be able to continue these podcasts.
Thanks for your support!

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Special Parents Confidential Episode 33 Lt. Governor Brian Calley Returns

Lt. Governor Brian Calley Returns.

What a difference a year can make. In December of 2014, the Michigan Joint Committee on Administrative Rules was going to approve some changes to the Michigan Administrative Rules for Special Education (MARSE) that would have severely impacted parent participation in their children’s education. However, during the only Public Comment time the committee allowed, Michigan’s Lieutenant. Governor, Brian Calley asked the committee to suspend the meeting and take no further action, because he felt that there had not been an adequate amount of time to allow parents to have input into the rules changes.

What followed next, in 2015, was an unprecedented listening tour undertaken by the Lieutenant Governor. He traveled around the State, holding public meetings where he listened to parents of special needs children talk about their concerns. These meetings were up to two hours in length, during which the Lt. Governor said very little and allowed every parent who attended to speak.

I was privileged to attend the meeting the Lieutenant Governor held in Grand Rapids, and had a chance to ask him if he would be a guest on Special Parents Confidential to talk about his efforts. That interview took place in June and you can listen to it here – Special Parents Confidential Episode 24.

In November of 2015, Lt. Governor Calley completed his listening tour and compiled a report summarizing the key points from parents for Michigan Governor Rick Snyder, who then appointed Lt. Governor Calley to head a Special Education Reform Task Force, which would take the Lt. Governor’s report and make a recommendations strategy for the State Board of Education. That report was presented to the Board of Education in January of 2016.

We are very pleased that Lt. Governor Brian Calley has taken time from his schedule to talk to us on Special Parents Confidential about the Special Education Reforms that the Task Force has recommended, and what Michigan families can do to help. Lt. Governor Calley also talks about a new project that he and Michigan Supreme Court Justice Richard Bernstein (who I interviewed in August of 2015 – Special Parents Confidential Episode 30) are working on together, called the Hidden Talent Tour.

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

Links mentioned in the podcast:

Michigan Lieutenant Governor Brian Calley’s Website

Summary of the Special Education Reform Task Force Recommendations

Full Report of the Special Education Task Force (.pdf form)

Information on the members of the Special Education Task Force

Information on the Michigan Hidden Talent Tour 

Michigan Senate Website – including the Find Your Senator link

Michigan House Website – including the Find Your Representative link

 

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John Pellegrini Will Speak At The 2016 Kent ISD LEAP Conference

John Pellegrini Will Speak At The 2016 Kent ISD LEAP Conference.

I am very excited to announce that I’ve been invited to give the keynote speech at this year’s Kent Intermediate School District LEAP Conference.

LEAP, which stands for Lead Empower Assist Parents is a day-long six hour conference, scheduled for Saturday, March 12th, 2016, for parents of Special Needs Children in Kent County, Michigan. The workshop is designed for parents and providers of children with special needs to meet with area experts, educators, therapists, and other organizations who work to help children with special needs. Exhibitors, vendors and service providers will be on hand throughout the day to share resources and answer questions.

Many presenters at this year’s LEAP Conference have been guests on Special Parents Confidential and they will be talking in greater depth about their services. For my own Keynote Presentation, I’m going to talk about Special Parents Confidential, why I decided to create the podcast, and what I’ve learned in the three years that I’ve been doing these episodes. You’ll also have a chance to ask questions and I’m interested in hearing your ideas for future episodes.

Some of the breakout sessions during the day include legal planning for a child with disabilities, challenging behaviors: when typical parenting strategies aren’t working, caring for the caregiver, building communications skills through play, aided communication for early childhood, and much more. You’ll also be able to meet the presenters in the vending area. Free childcare will be provided throughout the day by the David D. Hunting YMCA.

There’s still time to register to attend the LEAP Conference. You can find out more information on the Kent ISD LEAP Conference Page, and you can register to attend the conference (cost is $15.00 per person) by Clicking on the LEAP Registration Page. If you live in the West Michigan area, I highly recommend you attend the Kent ISD LEAP Conference. Looking forward to seeing you there!

Kent ISD Leap Conference Page

LEAP Registration Page

LEAP Breakout Session Schedule.

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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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.

Click on this text link: Special Parents Confidential on TuneIn, or use the TuneIn button located on the right of this post under “Follow Us”. You can also use the Sharing buttons below this entry.

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

Please share with your friends and family on all social media. Use the buttons below to share this post with any of the social media services listed below. And be sure to check us out on TuneIn.

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.
Thanks for your support!

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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 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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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 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 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 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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