Monthly Archives: April 2013

Special Parents Confidential 07 One Parent’s Journey

One Parent’s Journey

Parents of special needs children spend most of their time dealing with the present. We tend to think mostly about what our children are doing right now, tomorrow, and maybe next week. If we think of the future, it’s mostly along the lines of, “what is school going to be like for our child next year?” Rarely do we ever consider what our children’s lives will be like ten years from now, fifteen, twenty, beyond.  Perhaps because the reality of special needs children is that so much needs to be taken care of in the present, the future can be hard to visualize.

Predicting the future is, of course, impossible, but sometimes it can be helpful to hear from parents who have older children. Those of us whose children have made it into adulthood and are transitioning from schools to colleges, and even into careers. In many cases these parents have not only seen their children’s lives change, but have had their own lives changed in ways they never expected.

Our guest on this episode of Special Parents Confidential has had just such a journey. Stacy Burns has two sons born with Aspberger’s Syndrome. Her oldest, Devin, is now an adult going to college and beginning a career. Stacy talks about Devin’s life from early childhood to the present and also tells us how his disability wound up giving her opportunities that ultimately lead to a new career in a field she never would have imagined. It’s a story of hardships, frustrations, and setbacks, but it’s also a story of achievements, unexpected changes for the better, and success. In other words, it’s a story of a parent, and a great example that even though our children require special help, they can achieve as much as any child.

Organization mentioned in this podcast: 

MOKA – Muskegon, Ottawa, Kent, & Allegan: We See The Individual In Everyone. Serving individuals and their families throughout Western Michigan.

YAPSS – Young Adults Project for Service and Socialization of West Michigan.

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Special Parents Confidential 06 Special Education Advocacy

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.  Kathy’s phone #: (616) 218-2395.

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Autism Is Not A Disability

Autism Is Not A Disability Article From The Baltimore Sun, by John P. Hussman.

Our friend (and first episode guest) Carol Lippert, shared this very interesting article that was published in the Baltimore Sun on April 10th, and written by a parent of a 19 year old boy with autism.

The article has some eye-opening perspectives for people about what a ‘disability’ really means. It’s definitely worth sharing with your friends and family, especially those who may not fully understand what autism means.

For that matter, you could apply the same perspective of this article toward virtually every other disability that people may have.

Autism Is Not A Disability, by John P. Hussman, published in the Baltimore Sun, April 10th, 2013.

April Is Autism Awareness Month

April is Autism Awareness Month. Autism is a medical term for a large umbrella of brain disorders encompassing a wide range of disability from very mild high functioning to severely disabled.  Some or all of the areas shown below can be affected in different ways. Autism is a genetic neurological condition that you are born with, and is not the result of bad parenting, diet, overstimulation, or any other outside influences. Learn more at the Autism Speaks website.

brain_autism

This graphic comes from Iain Carstairs blog: Science and Religion, in an article entitled Atheism and Autism. It’s a fascinating read, and you can find a much larger version of  this graphic in the article (this was the best I could pull off).

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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NBC Rock Center Segment On Adult ADHD.

Last night Rock Center on NBC had a great report on Adult ADHD. They offered a lot of really important information on ADHD including proof that ADHD is a genetic condition in the brain. Definitely worth watching! NBC Rock Center

Also check out our interview with Dr. Oren Mason, who shares his own story about living with undiagnosed ADHD (he went through medical school and many years of private practice with it) and how he now specializes in treating ADHD.