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My “ah-ha” moment with my son

By Mary Rosswurm

When my son, Brad, was in middle school I would ask him every day who he ate lunch with and every day, it was the same, he had eaten lunch alone. This just broke my heart!

In elementary school, he was unable to tolerate the loud noise and all the activity in the cafeteria, so he would eat in the classroom. The teachers made sure he had one or two typical peers eating with him. It was seen as a privilege to eat with Brad in the classroom. But middle school was different. I would often call the teacher or write her a note and ask if she could arrange for some kids to eat with him, to which she always agreed to try to put something together. While I know he had made progress being able to eat in the cafeteria, it made me so sad to think of him sitting alone each day eating his lunch.

One day, I asked Brad who he had eaten lunch with and, as usual, he said he ate alone. I asked him if it made him sad to eat alone, to which he replied, “No, I like eating alone.” I was shocked. Who likes to eat alone? I know people who would rather eat nothing than go to a restaurant or even a movie by themselves. I just didn’t understand how he could like to eat alone. So, I asked him why. Why did he like to eat alone? Brad simply said that he enjoyed watching the other kids but not having to think about talking while he was eating was better. He had to talk a lot during the day, but at lunch time, he could sit alone and not have to talk.

This was an “ah-ha” moment for me, like a big light bulb went off in my head. Eating with people and talking with others during lunch was MY social need, not his. I realized that while it would feel odd to me to sit alone and eat, it felt perfectly fine for him.

I began to become more aware of my needs and gauge of normalcy compared to his needs and his gauge of normalcy. I realized that eating alone was OK for him and that no matter how hard I tried he was never going to be the social butterfly that I was. And that’s OK. He’s OK.

Mary Rosswurm is the executive director of Little Star Center and serves on the Indiana Commission for Autism. Her son,  Brad, has autism.

Emma is autistic. And Emma is awesome.

 

By Kerry Blankenship

I knew before the diagnosis came in. Someone gently suggested having Emma evaluated for autism, and I started researching. I knew when I read the list of common characteristics that I was reading about my 3-year-old daughter.

When the diagnosis confirmed what I knew, I thought, in those first days, that everything had changed. That “autistic” meant strictly defined limitations and endless struggles, that one word could tell me what her future would (or wouldn’t) be. I was scared of what I imagined to be a long, lonely road, and I wondered whether I’d be “mom enough” to shepherd her down it.

I know better now.

Emma is as she always was. She loves penguins and quesadillas, she seeks thrills and she brings sunshine to everyone that knows her. And she is autistic.

It’s not a word I’m afraid of anymore. She processes the world in a way that I can’t—and her perspective is beautiful. Sure, there are challenges, but there are also amazing milestones and a whole lot of joy.

Emma has taught me to rejoice in the little things, like the voice from the backseat piping up with a request for “donut!” every time we drive past Target. That she can tell me what she wants is always cause for celebration.

The diagnosis gave us resources and a community. It didn’t change my daughter or her potential.

Emma is autistic. And Emma is awesome.

Kerry Blankenship is a mom of one beautiful girl. Her daughter, Emma, is a learner at Little Star Center. 

Science, Fads, and Applied Behavior Analysis

By Thomas Zane, Ph.D., BCBA-D
Institute for Behavioral Studies at The Van Loan School of Graduate and Professional Studies, Endicott College, 376 Hale Street, Beverly, Massachusetts
Little Star Center Advisory Board member

Autism is known as a “fad magnet” because of the plethora of treatments available to treat the condition (Jacobson, Foxx, & Mulick, 2005).  Because of the varying levels of believability and evidence supporting many of these treatments, there is a need to be skeptical about any particular autism intervention until some minimal level of quality evidence exists showing that the particular treatment has demonstrated positive results. Most professionals adhere to the methods of science and scientific inquiry as the standards against which the quality of treatment evidence is judged.

Ideally, by universally adhering to common criteria for acceptable empirical evidence, professionals across disciplines would study a phenomenon and all arrive at the same conclusion as to its “truthfulness” or veracity. A conclusion about, say, the efficacy of an autism treatment would be that much more powerful given the adherence to the scientific method by professionals from varying disciplines all examining the same treatment from different perspectives.

Such a professional model is illustrated by Auditory Integration Therapy (AIT) and how professionals from different disciplines examined it and made a judgment about whether AIT should be promoted to consumers.

CLICK HERE to read on for the complete syndicated column

ACA Updates and Research

As a parent of a young adult with autism and leader of an applied behavior analysis (ABA) therapy center focused on autism, I know firsthand about the challenges in finding appropriate and affordable insurance coverage to support special needs children. As details of the Affordable Care Act (ACA) continue to unfold, there are still many more questions than answers. Regardless, all parents need to have coverage in place by Jan. 1, 2014. That’s about 90 days away. With more than an estimated 100,000 Indiana families affected by autism – many of whom rely on health coverage to fund services for their children – it is important to start researching now to ensure understanding of the new health insurance marketplace and the best options for your special needs family.

As I work in the field of special needs, I am fortunate to be able to stay a step ahead of most parents with special needs children, but I am still challenged in this ever shifting landscape. I recently had the opportunity to work with professionals at Gregory & Appel Insurance, who helped our center to host an informational evening. It was standing room only.

As a member of the Indiana Autism Commission, I am exposed to information and insights that provide ins and outs for impending changes. I’ve already bookmarked key websites. Do the same. They are www.healthcare.gov and http://www.in.gov/aca/.

Employers, no matter the size, have to send letters to employees by Oct. 1 to explain key changes in the marketplace for employees. Did you get yours? If not, ask.

First the bad news: Many families affected by autism are currently enrolled with Indiana Comprehensive Health Insurance Association (ICHIA). It ends Dec. 31, 2013. There are options available. Researching now is critical.

Also critical to remember, insurance plans are not required to cover ABA therapy, a highly researched and widely accepted approach to teaching children with autism appropriate social, communication and life skills. Once families research the marketplace and narrow their plan-list to two or three options, contact each provider and ask if ABA is covered.

Now the good news: Medicaid, Medicare and military coverage will not change. These plans will remain the same on Jan. 1, 2014. New health insurance plans or insurance policies will cover preventive services without cost-sharing. Autism screening for children at 18 and 24 months is among those preventative services. For special needs families, particularly those affected by autism, this new health insurance marketplace could offer expanded options for essential services, including intensive behavioral therapy.

While change is hard, we are seeing a wide open marketplace with options. For families with coverage through an employer, remember the marketplace is good for additional coverage for families that need it. If parents choose this option, they would not be eligible for tax subsidies, but cannot be denied coverage due to preexisting conditions.

If you are not on an employer plan and are seeking coverage for yourself or your family, you can go through the individual marketplace operated by the federal government. A commercial marketplace, where an insurance agent helps you find coverage also is available, as are individual policies outside the exchange through a broker.

All insurance policies offer essential benefits, but monthly premiums differ. ACA requires insurers to cover essential health benefits, including laboratory services, prescription drugs and pediatric care, through four plan levels: bronze, gold, silver and platinum. Monthly premiums are based on the chosen plan.   

Reality is the details and options will continue to unfold in this new and shifting landscape. It is up to parents and families to engage now with their employers or insurance companies to determine the best option for their children. Remember, we only have 90 days to make the best decision on behalf of our children. Start now.

-By Mary Rosswurm, executive director Little Star Center