Tag Archives: Medical Information

Special Parents Confidential 61 Ehlers-Danlos Syndrome

Ehlers-Danlos Syndromes.

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

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

Invisible Special Needs.

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

One Family’s EDS Story.

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

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

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

Links Mentioned In The Podcast

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

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

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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. 
Thanks for your support!

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Learn The Signs – Act Early – Revisiting SPC Episode 37

Learn The Signs – Act Early

Last spring we talked to the Center for Disease Control and Prevention about their Learn The Signs, Act Early, program to help parents better understand if their child has Autism. 

Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.

Learn The Signs. Act Early. From The CDC.

To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early.  From the website: 

“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”

In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.

Important Links From The CDC:

Learn The Signs. Act Early.

Developmental Milestones.

Printable Milestones Checklist pdf.

Amazing Me – It’s Busy Being 3! Parents, this book for children ages 2-4 will show you what to look for as your child grows and develops. Whether you read this story to your child online or have a hard copy of the book, ask your child to find the koala bears. Each page with a koala bear also has a star and milestone at the bottom just for you. See if your 3-year-old is able to do some of the same things as Joey.

What To Do If You’re Concerned.

The National Center on Birth Defects and Developmental Disabilities. – Resource website from the CDC with great information on many issues for parents of special needs children.

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, Tumblr, 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 services. 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 37 Act Early.

Learn The Signs. Act Early. 

Autism is a growing concern for parents across the United States and around the world. It’s estimated that 1 in 68 children will be diagnosed as being on the Autism Spectrum. The good news is there are now more effective treatments and therapies than ever before, and there is more credible research and information that can help parents, educators, and medical professionals work effectively with children and adults with Autism to lead healthy and productive lives.

To help parents understand what Autism is and how to better monitor their children’s developmental milestones, the Center for Disease Control and Prevention, commonly known as the CDC, has launched a new program website: Learn The Signs. Act Early.  From the website: 

“From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern.”

In this episode of Special Parents Confidential, we talk to two guests from the CDC; Katie Green, who is project lead for Learn The Signs. Act Early, and Dr. Jennifer Zubler, who is a pediatric medical consultant for the CDC’s National Center on Birth Defects and Developmental Disabilities. You’ll learn about how the program began, some of the milestones that your child should achieve, the importance of early diagnosis, and how to talk to your doctor or pediatrician if you are concerned about your child’s developmental progress.

Important Links From The CDC:

Learn The Signs. Act Early.

Developmental Milestones.

Printable Milestones Checklist pdf.

Amazing Me – It’s Busy Being 3! Parents, this book for children ages 2-4 will show you what to look for as your child grows and develops. Whether you read this story to your child online or have a hard copy of the book, ask your child to find the koala bears. Each page with a koala bear also has a star and milestone at the bottom just for you. See if your 3-year-old is able to do some of the same things as Joey.

What To Do If You’re Concerned.

The National Center on Birth Defects and Developmental Disabilities. – Resource website from the CDC with great information on many issues for parents of special needs children.

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, Tumblr, 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 services. 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 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 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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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

Deciding Who Sees Students’ Data – New York Times Article

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

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

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

Deciding Who Sees Students’ Data – New York Times Article