It’s live!
My October TEDx Dayton Talk, “Lessons My Daughter With Autism Has Taught Me” is now live on YouTube.
This presentation was probably the most difficult to prepare for of any I’ve done. The process made me deeply search what I think, what I feel, and what I believe – not only about Amelia, but about education and all students. I hope the result, and Amelia’s story, can serve as an inspiration to think deeper about learning and expectations.
The 6th annual TEDx Dayton event has come and gone. The theme for this year’s program was “Shift”.
I was so honored to be included as a speaker for this year’s program. My talk was about lessons I have learned from my daughter, Amelia. Amelia just turned 9 years old, and was diagnosed with Autism just before her third birthday.
I have told versions of this story in other formats – as a five-minute Ignite session at the Ohio Educational Technology Conference a few years ago, in an article that was published in a booklet called “Sharing Hope”, and as a brief keynote address to special education and school improvement consultants in Ohio. But, the presentation was never as “polished” as it needed to be for TEDx Dayton.
The process of breaking my thoughts down to their bare essence, and then building back up to a connected and meaningful series of thoughts, was one of the hardest things I have ever done professionally. I am deeply grateful for all of the support that the TEDx Dayton organizers offered me to help get my talk to that point – after all, it will soon be available on the Internet for the world to see. (Yikes!)
It takes several weeks for the recordings to be finalized and posted among the videos on the TEDx site. But you can bet that once it is there, I’ll happily share Amelia’s story with anyone who would like to listen!
Earlier this year, I submitted a TEDx Talk proposal for this year’s Dayton event. Mine was one of nearly 200 proposals submitted. I was very pleased to be chosen as one of about 50 to get to audition. And now I have the honor of being chosen as one of the speakers at this year’s TEDx Dayton!
My talk is titled “Ten Things I Have Learned from Amelia.” Amelia is my soon-to-be-nine-year-old daughter, who was diagnosed with autism just before her third birthday. This talk has been brewing in my mind for years, and I have already used it as the basis of a five-minute “Ignite” style talk, and it appears in the CCHMC booklet “Sharing Hope”, which is given to families of individuals who are beginning a plan of care at their Department of Developmental and Behavioral Pediatrics. While there have been many discussions over the last six years about what and how we might teach Amelia, I have found it to be much more powerful to pay attention to what and how she is trying to teach me about herself and the way she sees the world.
The organizers of TEDx Dayton have pushed me (and all of the other speakers), to make sure that we are able to give the best quality delivery we can of the best quality construction of our message that we can. On Friday, October 12, Amelia’s will be one of several stories that are told that day, on the stage of the Victoria Theatre.
I have many, many people to thank for their contributions to Amelia’s development over the last nine years, and I won’t have time to thank them all on October 12. But, my goal is to let Amelia, and all of her friends and family, and everyone out there who can identify with her, know just how amazing she is and how much we can all learn from one another if we’re willing to pay attention to the lessons being taught.
On Tuesday, May 8, 2018, I was making the 90 minute drive from Felicity, OH, to the Dayton Metro Public Library. I was on my way to an audition for this year’s TEDxDayton event, coming in October. (I’ll let you know if I made it or not.)
On my way, I was listening to “Here & Now” on WVXU, 91.7FM, from Cincinnati. The show included this feature on finding meaningful work for young adults with Autism. I found it very fitting, since my proposed TEDx talk is about lessons I have learned from my daughter, Amelia, who was diagnosed with Autism just before her 3rd birthday.
The archived audio version is below. I remain very hopeful that by the time my daughter is ready to graduate high school that there will be more options for her to be a contributing member of the workforce than a sheltered workshop. That possibility has more to do with the system understanding her strengths than her fitting into the system we have created.
https://player.wbur.org/hereandnow/2018/05/08/meaningful-work-autism
On March 1, 2017, I saw a whole lot of awesome.
My daughter, Amelia, was invited to attend a private “Launch Party” for a brand new booklet, published by Cincinnati Children’s Hospital Medical Center’s (CCHMC) Division of Developmental and Behavioral Pediatrics (DDBP). The booklet is titled “Sharing Hope: The Stories of our Patients and Families”, and it will be distributed free of charge to families of individuals who are referred to DDBP for various reasons. The booklet contains brief articles written by individuals who have previously been referred to DDBP, and their family members.
[Download the booklet, PDF (6MB)]
Amelia’s story is one of 26 articles featured in the booklet. The article is a summation of the contents of my “Ten Important Things Amelia Needs You to Know” Ignite-style presentation.
I had an opportunity to meet some of the other honored guests there, and I feel very privileged to have met such wonderful people! Reading some of their stories after meeting them just makes it even more powerful to me. Families of people like Lily, Vineet, Patrick, Andrew, and so many more, have willingly told their stories with the intent of conveying encouragement and hope to others who are just learning what a diagnosis of “autism” or “down syndrome” or “spina bifida” will mean for their lives.
The impact of a powerful network of caring professionals is what keeps CCHMC near the very top of U.S. News & World Report’s list of best children’s hospitals. But, there is something extra to be gained from hearing the experiences of others at a time when most families find themselves starting a journey nobody they know has gone through.
Alongside the best medical treatment available, there is something soothing about a voice that can tell you honestly, “I know how you feel.” That’s something no medicine can provide. And, it has a lot to do with why these families chose to own their story and tell it, rather than try to hide the diagnosis that, quite honestly, changed their lives forever.
Amelia’s diagnosis is a challenge, but it is not a shame. She rises to meet that challenge every day. That message of love, belief, and hope is conveyed throughout the pages of this booklet, and I am proud to be dad to such an inspiring young lady.
On Wednesday, January 10, 2017, the US Supreme Court took up the case of Endrew F. v. Douglas County (Colorado) School District. At issue in the case is, “What level of service satisfies IDEA, other education law, and legal precedent?”
A text transcript of the arguments put before the court is available from the website of the US Supreme Court.
Endrew F. has autism. During his fourth grade year in the Douglas County School District, his academic achievement was slipping, and his behaviors became more and more detrimental to his educational progress. The family and the district went through many of the typical hoops that families and districts are familiar with in writing (and re-writing) an IEP for Endrew. Endrew’s family were not satisfied that he was receiving appropriate services under IDEA, and eventually took the step of withdrawing him from Douglas County and enrolling him, at their own expense, in a private school. The family then sued the district for the cost of the private program, stating that the school failed to provide an adequate system of academic and behavioral support for Endrew. The district countered that they met all the legal requirements and that Endrew was making enough progress to show that the district was in fact providing an adequate education.
In the last step before the US Supreme Court, the Tenth Circuit Court of Appeals decided in favor of the school district, stating that if there was any educational benefit at all in what the school provided, they had met their legal obligation.
Here are my thoughts after reading through the transcript and doing some background research:
I’m no scholar on the US Supreme Court, but the tone and direction of the questions and discussion as delivered in the transcript gives me good reason to think that the US Supreme Court will rule that there is a responsibility on the part of public schools to provide more than just a “little better than nothing” (or, as the Court puts it, “barely more than de minimis“) education.
The latest reauthorization of ESEA is titled the “Every Student Succeeds Act”. The US Supreme Court is about to rule whether we really mean “every student.”
Anyone who works with people who have been diagnosed with Autism knows that they are all unique individuals. However, there are some general characteristics that are recognizable in many such individuals.
My daughter, Amelia, does best in situations where there is a familiar routine, and transitions are anticipated and done calmly and smoothly.
If you have ever flown on a commercial airplane, you know that the process of getting checked in, getting through security, and actually boarding the plane can be filled with frustration, waiting, sudden changes, more waiting, occasional loud noises, and more waiting. Some typical people, even frequent flyers, have difficulty dealing with this situation using socially-appropriate behaviors. Imagine how much more difficult this can be for people with Autism.
Many families have imagined that scenario, and decided that the prospect of flying in an airplane is something they don’t even want to attempt.
Enter the SOAR program.
SOAR stands for “Starting Our Adventure Right”. The SOAR program at Greater Cincinnati Northern Kentucky International Airport (CVG) is a collaboration of The Kelly O’Leary Center at Cincinnati Children’s Hospital Medical Center, The Autism Society of Greater Cincinnati, Delta Airlines, and CVG. The SOAR program permits individuals with Autism and their families to get a supported experience of every part of an airline trip – except actually taking off and landing.
For this program, I had to attend a two-hour orientation session at the airport. This was a very valuable experience! I met other parents who were there for the same program, and got a lot of information about what we would experience. They also gave us some excellent visual support materials for what would happen on the actual day of the SOAR event. These materials included visual schedules for each part of the process, a “First… Then…” board, and some “Wait” cards. This allowed us some opportunities to familiarize Amelia with the schedules and the process long before the day of the actual trip to the airport.
My biggest takeaways from the event:
If your preferred airport does not have a SOAR program, or something like it, to acclimate potential passengers with Autism Spectrum Disorder to the rules and routines of commercial flight, ask them about starting one. The program at CVG would serve as a great model for anyone wanting to bring the program elsewhere.
If you live in the Greater Cincinnati area (I live almost 2 hours away, and it was well worth it), you have a family member who has a diagnosis of Autism, and you even just want to find out whether flying is something that will need more support and practice, I highly recommend the SOAR program. It is free for families to participate, and the experience is absolutely phenomenal.
michaeldroush.org 