Monthly Archives: May 2015

Special Parents Confidential Episode 23 Finding Matthew

Finding Matthew

For parents of special needs children perhaps the most stressful and anxious time is when you are first told that your child has problems. That first diagnosis is such a shock. You don’t know what to do, you don’t know what to think, and you feel completely overwhelmed with it all. One of the most helpful things for parents of special needs children is when they hear stories of other families who have already gone through similar experiences and have shared their story. The challenges and struggles are universal, no matter what the disability or the severity. Just knowing that someone else is out there facing the same worries and fears, and has taken the time to tell that story, can be very reassuring.

In this episode of Special Parents Confidential I’d like to introduce you to just such a parent. In 1970, Donna Kirk, who, with her husband Ed, is from a town near Toronto, Canada, had gone to the hospital for the birth of her first son, Matthew. But problems occurred and their baby had oxygen loss during birth and suffered severe brain damage. The next day their son was transferred to Sick Kids Hospital in Toronto where the doctor there told them that their son was basically, in his words, “a vegetable with a heartbeat”. This doctor advised them to institutionalize their son and have another baby as soon as possible… implying that they should just forget Matthew.

Donna and Ed ignored what the doctor told them and took him home as soon as they could. They fought for him and cared for him throughout his entire life and, in the process, proved that first doctor and many other people wrong about Matthew’s abilities. Ed and Donna had two other children after Matthew, a brother an sister.  Matthew died at the age of 40 in 2010, and Donna has written a book called, Finding Matthew, about his life, his challenges, and the struggles that she and her husband went through from his devastating diagnosis to his ultimately successful life and becoming a contributing member to society. The book shows how even the most severely disabled people have incredible gifts and how the family can work together to get through any adversity. It’s definitely a must-read for all parents of special needs children and their families.

Donna’s extraordinary book, Finding Matthew is available on Amazon Books, and you an click either of those links to take you  to the page. Donna Kirk also has a blog site where she posts resource information and updates. Just click on her name and you’ll be re-directed to her site.

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

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Special Parents Confidential Episode 22 Vaccine Safety

Vaccine Safety

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

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

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

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

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

American Academy of Pediatrics Immunization Webpage

The Center for Disease Control Vaccine Website

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

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

Immunization Action Coalition and their additional website  Vaccine Information

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

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

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

Reliable Sources of Immunization Information – Link to downloadable pdf.

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

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

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Special Parents Confidential Episode 21 IEPs and the Law

IEPs and the Law.

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

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

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

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

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

LEGAL DISCLAIMER:

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

Here are the links mentioned in the podcast:

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

COPPA – Council of Parent Attorneys and Advocates

Wrights Law – Special Education Law and Advocacy

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

Thanks for your support!

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Special Parents Confidential Episode 20 Health and Wellness

Health and Wellness.

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

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

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

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

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

MDCH Children’s Special Health Care Services   

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

US DHHS HRSA Maternal and Child Health

CDC Parent Information Infants & Toddlers

CDC Important Milestones For Infants

NCMHI Children and Youth with Special Health Care Needs

American Academy of Pediatrics Bright Futures Page

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

Thanks for your support!

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