Tag Archives: Therapy

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.

Sibling Support – Revisiting SPC Episode 29

Sibling Support

The Holidays always mean family visits, and with that in mind, we thought the subject of Sibling Support would be a good one to repost. This is the first of two episodes on Sibling Support we did, back in July of 2015.

Being a parent of a special needs child requires a great deal of concentration and a lot of involvement. So much so that often if the special needs child has siblings, they can feel overlooked or forgotten. Another challenge is stress involving sadness or unanswered concerns about the special needs child, which can lead to greater problems as children grow into adulthood. 

Communication Is Key

The simple fact of the matter is, the sibling is going to have the longest relationship with a person who has special needs. Longer than the parents or any professional support person. Siblings can be the most important person a special needs child will have in his or her life. Yet for many families, parents don’t always communicate well with a sibling about the situation involving the special needs brother or sister.

How can parents prevent poor relationships with the rest of their children so that they are able to help advocate and care for their special needs sibling? One excellent way is to make sure your other children have support group help, like Sibling Support.

Groups That Can Help.

In this episode of Special Parents Confidential, John talks to Andrea Vugteveen, a Sibling Support Group facilitator with Family Tree Therapies in Grand Rapids, MI. Andrea talks about the problems that siblings often have in their relationships with their special needs brother or sister, as well as their parents. She discusses what siblings of special needs kids want, and offers advice on what parents can do to make sure the relationships are strong and healthy.

Links Mentioned In This Podcast

The Sibling Support Project

Sibs UK – Sibling support for the United Kingdom

The following PDF attachment has the above links, as well as book titles, and links to You Tube videos about Sibling Support. Download the PDF by clicking here: Sib Group Parent Resources  

The following PDF attachment is the letter for the Child Who Has A Sibling With Special Needs. Download the PDF by clicking here: Dear Child Of A Sib With Special Needs

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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!

Applied Behavior Analysis ABA – Revisiting SPC Episode 15

Applied Behavior Analysis. ABA.

In January of 2014 we posted episode 15 of Special Parents Confidential, in which we learned about Applied Behavior Analysis ABA. Our guest was Conny Raaymakers, who is a board certified behavior analyst. Her interview has become our most downloaded and listened to episode, with nearly double the listens of any other episode we’ve done. It’s even been cited in a text book on applied behavior analysis.

What Is ABA?

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

New Contact Information.

However, since that interview took place, Conny has had some changes in her career. She is now the Director of ABA services at Developmental Enhancement Behavioral Health. Conny is a Behavior Analyst and Limited Licensed Behavioral Psychologist.  She talks about the history of Behavior Modification, the decades of research that has been done to study the effectiveness of the treatments, and clears up the misconceptions people have about Applied Behavior Analysis. Conny also discusses the drawbacks and problems with using alternative or ‘fad’ treatments, how to watch out for misleading claims and how to spot phony success stories.

Updated Links & Information

Developmental Enhancement Behavioral Health

Conny Raaymakers Profile Page

Email: craaymakers@debh.org 

Association for Behavior Analysis International

A Reminder: Please share Special Parents Confidential with your friends, family, and  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, or other social media sites. 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, Google Play, Stitcher, TuneIN, Poddirectory, Blog Talk Radio, and other podcast directories as a free subscription. Additionally, please consider writing a review about our podcast on any 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!

Amazing Things Happen – Excellent Autism Animation

Amazing Things Happen.

A few days ago I came across the above video on Facebook called Amazing Things Happen, It does an incredible job of explaining Autism in a way that kids could understand.

Amazing Things Happen, since it was posted online, has had over 5 million views. It’s been translated into 28 subtitled languages, and 10 fully dubbed versions. I wanted to know more about the person who created the video, Alex Amelines, and how he was able to create such a well-done piece.

From Alex’ business website:

“Colombian by birth. British by naturalisation.

“I worked in Editorial design for 5 years. Back in Colombia. Then I moved to the United Kingdom to do an animation course after which I ended up settling up in. Both in the animation field and in the UK. 

“I now work as an independent animator and director, my animations have gone in all directions: television, exhibitions, installations, games, films, planes, etc. In 2012 I established Studio Tinto in an attempt to become rich and famous.

“I’ve achieved neither.”

This wasn’t quite all the information I was looking for, so I sent Alex a message. He replied that his preference was to not do a podcast interview because he was worried that his accent was a little to hard to understand. But he would be happy to explain the process of how he came up with the animation.

By the way – Alex mentions the term SENCO, which in the U.K. stands for Special Education Needs Coordinator.

The Amazing Things Happen Background Story.

“I must warn you that my story is not an exciting one and that I’d prefer the focus were on the animation rather than me or my family but I’ll try to tell you what drove me anyway:

“A few years ago, my son’s school organised an assembly to help explain autism to the children, which struck me as a wonderful idea. The talk was very interesting and the local expert who led it obviously knew her stuff but it was limited by a lack of clear, visual materials. The children got most excited at a slide of Lego toys and enjoyed a scene from the animated series Arthur, where Arthur meets a boy who doesn’t make eye contact and only wants to talk about trains.

“My immediate thought was, this could all be an animation – and might even retain the children’s interest better that way. I’ve always loved working on creative side projects to distract me from client work and thought this would be both fun and potentially useful for the school. Perhaps even a few more schools, locally. I had no big plans beyond that.

“I met with the school’s SENCO and told her my idea, which she as was excited as I was. I had to do a lot of research, a lot of books, a lot of TED talks, blogs, articles, etc. I met with the SENCO several times to discuss my progress. The hardest part was to condense the script into 5 minutes, as English is my second language, I’m not a trained writer and most importantly, because there is so much to say about autism! The spectrum is so unforgivingly vast it seemed impossible keep it all in, everything seemed so relevant. But I knew from experience that this could only work if it was short enough to be feasible to finish on my own and also to retain the attention of small children.

“My prerogatives were: keep it short, only positive words, keep the language simple.

“It took me the best part of a year to get to a point that I thought I can start animating. But before doing so I ran it past the SENCO and reached out to Prof. Tony Attwood, a leading expert on autism who was really generous with his time and knowledge. He checked the script and storyboards and made some adjustments to the language. So I felt I had a proper seal of approval, which cheered me on. 

“As I moved on from writing to animation things got easier. I was in my element. I developed the characters, created the artwork, did some research for the look of the animation. The backgrounds and colours were inspired by old 1940s UPA animations, which I’ve always loved.

“For the music I asked London based musician Chris Harrington, he has always supported my animated projects with beautiful original compositions. The narrator is a Scottish actor called David Gant (Braveheart, Sherlock, Final Fantasy VII), who I’d met while working on the visual effects of feature film, The Fitzroy. He has a beautiful booming voice that is both authoritative and warm. The kind of voice that inspires trust. So I reached out and David kindly agreed to do it pro bono. Mike Avgeros also generously offered to let us use his recording studio for an hour on a weekend. 

“We released Amazing Things Happen in time for autism awareness month, then something amazing really did happen. By the second day the film had been seen thousands of times. I was over the moon with that, but after two weeks it was 5 million. It was all very surreal and very moving, as I got many beautiful messages of thanks from parents, teachers and – most importantly to me – from people who themselves have autism. So it has been very rewarding, more than I had ever imagined.

“Right now Amazing Things Happen has subtitles in 28 languages, it has been dubbed into 10 languages, apart from the French and German narrations, everything has been from contributions from people who’ve liked the project. And there are more foreign narrations coming, the former director for the Icelandic Autism Society has offered to do an Icelandic version, the Executive Director of OC Autism wants to do Vietnamese, Chinese, Korean, Tagalog and Hindu, there are offers to do Finnish, Norwegian, Portuguese, Arabic, Hebrew, Estonian, Japanese and Malay. And an animation studio in Bangladesh, who are connected with the Prime Minister’s daughter are recreating the animation with Asian themes.

“From the reaction it’s clear that there is an urgent need for this kind of material. I would also love to do more, so I am considering a crowd-funding campaign to develop a series in which children could tell their own story, describing their autism to us. Raising funds this way would mean I could work on this full time, rather than finding a spare hour here and there around my usual client work. There’s so much more to be said on the subject. And I figure that the only way to paint a portrait of something that has a million faces, is to paint as many pictures as possible!”

Additionally, Alex wrote the following to me in a separate email:

“In relation to how I visualised it, I think the fact that so many autistic people have felt it is an accurate depiction is sort of a fluke, I mean I did lots of research but I knew it wasn’t going to be accurate for everyone as the spectrum is so vast, so it felt like taking a gamble, I tried to be generic (too much detail in some parts, too little detail in others, too bright, too loud), while showing things that Neuro-Typical children can relate to, so they can put themselves in their shoes. Professor Tony Attwood came up with the idea of removing people’s faces to convey the fact that they can’t read people’s expressions, which I think is a great touch, even if it’s not obvious to people who see it, it is there. 

“It helped me a lot that I am a visual person, for instance I can’t remember a phone number but I can remember the pattern my finger draws as it types. Even my mental associations are visual, when I was reading “The Reason I Jump” as part of my research at some point it evoked a scene from The Man of Steel, were Superman as a child starts discovered his powers (well I say discovered but it looked more like they ran him over, the scene is terrifying), suddenly he can hear everyone at the same time, see everything too clear, too bright, too much, that’s how I imagine sensory overload. Unfortunately autistic people don’t have superman’s ability to control this, there’s no filter or off button.”

My thanks to Alex Amelines for offering this explanation of his work.  

Amazing Things Happen is something everyone should watch. I highly recommend you share this video with everyone you know!

Links: 

Alex Amelines Professional Site 

Amazing Things Happen Official Website.

Special Parents Confidential 52 Ponseti Method of Clubfoot Treatment

Ponseti Method of Clubfoot Treatment

Clubfoot, or talipes equinovarus, is a treatable birth defect that affects approximately 150,000-200,000 children each year. When clubfoot occurs the foot is twisted inward and down. For decades the standard treatment for clubfoot consisted of performing radical surgery on the tendons and bones of an infant’s feet.

In the mid 1940s, Dr. Ignacio Ponseti, an orthopedic surgeon at the University of Iowa, began reviewing the results of the surgical treatments of clubfoot that were commonly used at the time. His findings were not encouraging. He discovered that, in adulthood, former surgical patients often experienced foot stiffness, pain, arthritis, and limited mobility, and in many cases required additional surgery.

The Ponseti Method.

By studying the anatomy and functions of a baby’s foot, Dr. Ponseti developed a non-surgical method to correct clubfoot in infants through gentle manipulation of the feet followed by the application of plaster casts. In 1948, Dr. Ponseti began using what has now become known as the Ponseti Method of clubfoot treatment. 

Our guest for this episode has a great deal of experience with the Ponseti Method of clubfoot treatment. Dr. Jose Morcuende is a professor of orthopedic surgeries at the Ponseti Clubfoot Clinic at the University of Iowa Children’s Hospitals. 

Dr. Morcuende trained directly with Dr. Ponseti and has helped to promote the Ponseti Method around the world through the Ponseti International Association, of which he is the President at CEO. He talks about working with Dr. Ponseti, how clubfoot affects children born with it, and the success rate of the Ponseti Method. Dr. Morcuende also talks about the mission of the Ponseti International Association, and the importance of finding a doctor who has been fully trained in the Ponseti Method.

Links Mentioned In This Podcast.

Clubfoot – University of Iowa Stead Family Children’s Hospital 

Ponseti International Association 

To Parents of Children Born With Clubfeet – Article written for parents by the late Dr. Ponseti explaining his method of treatment.

Glossary of Terms From Ponseti International Association – Glossary of some of the common medical terms used by doctors when treating clubfoot.

Special Parents Confidential 50 ADHD Nation Alan Schwarz

ADHD Nation Author Alan Schwarz.

ADHD Nation, Children, Doctors, Big Pharma, and the making of an American Epidemicis a new book by New York Times correspondent Alan Schwarz, that is putting a lot of focus on ADHD and the way it’s diagnosed and treated in the United States. Alan Schwarz is the Pulitzer Prize nominated investigative reporter who wrote more than 100 articles that helped expose the serious problems of concussions in football players of all ages. His work lead to movies and documentaries about the seriousness of concussions and to the NFL finally admitting the problem and making changes in how they deal with the problems.

Since then Mr. Schwarz has begun investigating ADHD diagnosis and medications, writing a new series of articles on the subject that lead to the publication of ADHD Nation.

Excessive Diagnosis?

Mr. Schwarz has done an intense amount of research in the hard statistical evidence that shows an often higher number of children and adults are being diagnosed with ADHD than what the established rate of diagnosis is supposed to be. In fact, it’s nearly three times the established number, which means millions of people more than expected are being diagnosed, or often misdiagnosed. He also profiles a number of the major names involved in the diagnosis and treatment of ADHD all the way back nearly 200 years when the symptoms we now associate with ADHD were first recorded. Along the way we meet Dr. Keith Conners, who has been called “the father of ADHD”, and we learn his concerns about how his work has been misused.

A Fair Balance.

ADHD Nation is a very well balanced book, in that it doesn’t attempt to deny that ADHD is a valid medical condition. In fact the book opens with the statement, “AHDH is real.” Mr. Schwarz proves that in the correct circumstances ADHD medications work and are highly effective. But, as you’ll hear in this interview, far too many people, especially children, are being put on the medications when they clearly do not have ADHD and don’t need medications. This is an important book and you’ll learn how Mr. Schwarz researched the numbers and compiled the evidence that he presents in the book.

Links Mentioned In The Podcast.

ADHD Nation Official Website 

Alan Schwarz at the New York Times 

Alan Schwarz’ Profile on Wikipedia