8 Tips for Successful Holidays or Events for Kids on the Spectrum

christmas-kidsHolidays and family events are a joy and a stress in many families for both parents and children. If you have a child with special needs, these celebrations can become challenging. In a previous blog I offered some tips to making the most of holidays. Whether Christmas or Easter, I hope you find them helpful as the weekend approaches.

Look at the holiday through your child’s eyes

What aspects of the holiday would your child enjoy? Many parents simply enjoy buying gifts for a child. However, too many gifts can be too stimulating for some children. I found that with Ryan, three gifts work for him. Focusing on what he finds interesting is most important.

Adapt an Advent Calendar

Ryan and I often do a countdown while focused on the religious aspect of Easter. I also prepare Ryan for visits with family and social outings by using social scripting. By creating a countdown and practicing expectations, Ryan is better prepared for the events.

Decorate Throughout the House

If your child is over stimulated by sensory experiences, you may wish to limit the amount of decorations in one room and/or gradually decorate your home. Decorations are fun, but they are a change, and with change, comes anxiety.

Keep it Simple

Limit your schedule. When Ryan was about three years old, I noticed that he was quickly bored when visiting other’s homes, causing various behavior challenges. At that point, I made visits shorter. We followed the same routine starting early around 4:30 p.m. and ending by 6:30 p.m. Talking to your family about your schedule and why you need to keep your visits short and structured will not only help you, but allows them to understand.

Two Cars are Better Than One

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Autism: Questions and Answers

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There were activities for children and autism resources for parents at Autism Awareness Day.

Last Saturday, we hosted an “Autism Awareness Day” at the Millcreek Mall in Erie, PA. I had the opportunity to talk with a number of people who asked questions about some of the latest research findings.

The most frequently asked question revolved around the news that 1 in 50 school aged children are affected by autism disorders. This new statistic was the result of a recent government health telephone survey of 100,000 parents with children ages 6-17. While this number will not replace the official estimate of 1 in 88 American children, it indicates that the current estimate may in fact be lower than previously thought. Another point noted in the survey was that many children are not getting a diagnosis until 7 years of age or older, which is a surprise because we stress the importance of early diagnosis. This new information highlights the importance of increasing autism awareness, not only during April but all year long. Continue reading →

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Real Choices, Real Jobs

ImageWhat happens after your child graduates from high school?

Will he or she be able to get a job?

Will he or she be able to live independently?

These are questions that parents of children with disabilities ask themselves, often when their child is still in elementary school.  For the parent of a “differently-abled” child, these questions are imperative because the traditional paths of college, career and independent living may or may not be on the horizon — A journey I’ve experienced personally.

My son Ryan was born in 1993. I remember thinking that he would be a Notre Dame student, class of 2016. That dream quickly transformed to questions, and at the time that he received his diagnosis, I keenly remember saying to my friend, Jeanne, “I guess that he won’t be going to Notre Dame.”

In that moment I knew his future would take him down different paths and questions began to swirl through my mind: Would he go to school? What would his future hold? Will he work? Continue reading →

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Hare Care: Here comes the Easter Bunny!

ImageSunday was St. Patrick’s day, spring begins tomorrow (even though snow is falling outside my window), and Easter is right around the corner. Isn’t time flying by? As the days roll onward, I am making a concerted effort to take in and savor the joys of life surrounding me.

Springtime is one of my favorite times of the year–there is freshness in the air and new life in the blossoming flowers.  I am so looking forward to spring and the joy begins this weekend with a visit from a special friend.

The Easter Bunny has a busy day Saturday, March 23 as he leaves his usual bunny trails and hops to the Millcreek Mall in Erie, PA. We will be right along side of him as we are there with our annual Autism Awareness Day from 11 a.m.-3 p.m. to kick off Autism Awareness Month in April. Continue reading →

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What I learned from blogging

ImageOne year, 100+ blog posts and 12,000 views ago, I began blogging. I must admit that I didn’t know much about how to get started except that I would have to do a lot of writing, put up photos and come up with a blog design that was aesthetically appealing. I became familiar with the ins and outs of blogging as I went along, but what did I really learn?

Blogging is a Commitment: I begin on Monday morning researching the “hot topics” in autism. My goal is to have a rough draft completed by later that afternoon.  On Tuesday I edit and finalize content so that I can publish it that afternoon. Continue reading →

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What’s happening in three weeks?

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Bicentennial Tower at Dobbins Landing in Erie, PA lit up to spread autism awareness

How do you focus international attention on Autism? The Light It Up Blue campaign, sponsored by Autism Speaks, shines an international spotlight on the importance of autism education, research and support. On Tuesday, April 2, communities, schools, businesses and supporters around the world will join forces to increase autism awareness.

I’m excited to see the Erie community participate. The Bicentennial Tower will shine blue, our students and faculty will be wearing blue, and blue light bulbs will be shining at hundreds of residences and businesses through our community.

This movement stretches from Erie, PA to The Great Pyramids in Giza, Egypt, to the Reunion Tower in Dallas, Texas to the world famous Sydney Opera House in Australia and to Table Mountain in Cape Town, South Africa.

There is still time to join us: Continue reading →

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Read Across America & the Importance of Reading

ImageMayor Joe Sinnott, lifelong resident of Erie, made a visit to the Elizabeth Lee Black School today. He joins 40+ other community members who have come to our school this week as volunteer readers to our students. We are so honored that Mayor Sinnott joins us in our Seusstastical reading celebration! We asked the Mayor to share his thoughts about this experience with us.

You have been a volunteer reader before. What do you enjoy most about reading to the children?

I enjoy seeing their reactions to the rhymes and especially appreciate when the children join in with the rhyming.  

What book did you read this year?

“Are You My Mother?”

When you think of Dr. Seuss, what book first comes to mind?

“Green Eggs and Ham”

Which of the Dr. Seuss books is your favorite as a child and/or as an adult?

I remember having “Green Eggs and Ham” read to me as a child and still appreciate the message, reminding us to try new things. Continue reading →

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A Seusstastical Celebration

ImageIf you go to your local library or book store, they’re likely paying tribute to Dr. Seuss, who would have turned 109 this past Saturday, March 2.

Dr. Seuss, whose real name was Theodor Seuss Geisel published 46 children’s books, including the very popular The Cat in the Hat, Green Eggs and Ham, and How the Grinch Stole Christmas. He died in 1991 – but his legacy has endured among children throughout the world.

This week we are celebrating Dr. Seuss at the Elizabeth Lee Black School with community volunteers reading classic Dr. Seuss stories to our students.  Why are we doing this? Continue reading →

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Living with Aspergers: The Silver Lining

ImageWanting both to be popular but also wanting to be by himself. Wanting to be friendly but lacking the ability to make friends without being “weird” (his words). Robert Louis Milanich faced more than the typical childhood bullying challenges. The middle and high school years are a confidence knocking time, but add in a diagnosis of Aspergers and that time could easily diminish a child’s spirit. However, that’s not what makes his story unique. Robert’s hope and ability to “always find away” is what makes him extraordinary. Continue reading →

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Happening Now: Affordable Healthcare Act Falls Short with Autism

ImageThe US Department of Health and Human Services released its final rules regarding the 10 essential health benefits every state must include in their new Affordable Healthcare Act (AHA). Most disappointing is that the AHA fails to require states to include coverage for behavioral health treatment including Applied Behavioral Analysis (ABA). What does this mean for children and families living with autism? Consider this…

  • 1 in 88 children and 1 in 54 boys are diagnosed with autism every year
  • Autism is the fastest-growing developmental disability in the U.S.
  • Autism costs a family $60,000 a year on average
  • Applied Behavior Analysis (ABA) is the only treatment of autism that’s substantiated by research.

Congress wrote ABA into law; however, this requirement has disappeared in the new HHS regulations. Without this coverage, the financial burden falls on the parents and families – many of whom don’t have the financial resources to assume this cost. Does that seem right to you?

A child not receiving ABA therapy needs more expensive services throughout his entire lifespan, ultimately requiring long term financial support from the government.

  • The cost of autism over the lifespan is $3.2 million per person
  • Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention

Children with autism who are diagnosed at an early age have the best outcomes. The American Academy of Pediatrics now suggests that autism screening be a component of a well baby check at 18 months. An early diagnosis allows for intensive interventions, ABA being at the top of the list.

ABA is the use of techniques and principles to bring about meaningful and positive change in behavior. These techniques can be used in structured situations, such as in a classroom lesson, as well as in everyday situations, such as during family dinnertime or at the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the child.

Coverage varies state by state. Some states require no autism coverage; others allow coverage in an AHA plan only. Others offer coverage in state regulated health plans but not AHA. Finally, some states require coverage in both state and AHA plans. But should geography determine whether a person with autism gets the services he or she needs?

I believe autism insurance coverage should be in all health plans in all 50 states. Do you?

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