Autism Awareness/Acceptance Month Speech

Thank you everyone for showing your support for autism awareness and acceptance month by wearing blue and for being here today.  My name is JiYoung and I have an 11 year-old son, Lucas, who has a rare condition called Dup15q Syndrome which is only one of a handful of known genetic causes of autism.  My husband Gabriel, Lucas and our 6 year-old son, Liam, and I have been coming to LifeSong since 2018 and feel very fortunate that the pastors and Brenda were so welcoming about us starting a ministry for children and teens with special needs.   (Anna's introduction?)

Living with autism and other neurodivergent conditions can be challenging for the whole family but having awareness makes it a little easier to be in the public.  It means rather than being confined at home watching videos, we can board planes, take walks in the parks, go shopping and take vacations without people being afraid or staring at us as oddities or freaks.  We've had various reactions to our son over the years, but mostly positive due to people "getting us" thanks to campaigns of autism awareness that advocacy groups have promoted in recent years.

One such time was when we were on a flight to Seattle last year and Lucas would kick the seat in front of him.  The woman sitting in front initially was startled but then she took a look at him and turned around and didn't complain or acknowledge him at all throughout the whole flight.  I was mortified that we would end up on Inside Edition for an episode of violence in the air but when the flight landed, she and her husband, a very large and heavily tattooed man, turned around and said "he did well.  He did better than I thought"  (I'm not sure how bad she was expecting things to be...). I had so much gratitude for her remark and felt an immense amount of relief.  I think when she saw him it clicked for her that he wasn't being bratty but may have a cognitive disability and decided to show grace towards him.  This is the power of what awareness and acceptance can do for people.  

 The statistics are that 1 in 63 children are diagnosed with autism and there is no known cure.  Over 75% of couples with autistic children end up in divorce due to the overbearing stress of caregiving. Disabled people, especially those with cognitive disabilities, are the most discriminated subgroup of our country, if not the world.  

Though greater awareness and acceptance, we hope to promote fair and appropriate access to educational opportunities, medical care and rights for access to housing, employment and the opportunity to praise and worship God at their own developmental level.  

I've been asked how do I tie my understanding of a loving God with having a child with autism and was reminded of one of the miracle stories of Jesus.  

 In response to His disciples asking who has sinned for a blind man in John 9:3, Jesus responded, "No one sinned, it happened so that the works of God will be made known through him. "  It's not just that Jesus healed his blindness but the work of God which Jesus refers to (I believe) is that people with disabilities can impact other people's hearts to be more loving, compassionate, and understanding .  And that truly is the ultimate work of God.  I know my son has changed my heart in so many positive ways and my efforts to advocate for his needs has also benefitted countless other individuals with his condition. In his behalf and others with his condition, we have set up the annual Lucas T Ahn Family scholarship to encourage talented undergraduate students interested in researching Dup15q Syndrome.  I have participated in fundraisers and virtual walks to support advocacy organizations and hope to participate in the Orange County Marathon Festival in May. I have sat in on review boards of organizations that fund research grants.  I would never have participated in any of these had my son not been in our lives and it is a testament to the truth of Jesus when he said "it is so that the glory of God would be made known. " Everyone is divinely created and has purpose and value in God’s economy.  I pray you would also be blessed by their presence and come to see a glimpse of the glory of God through them. 

Thank you.

How do I Tie Autism to My Understanding of a Loving God and My Own Spiritual Journey?

For Autism awareness month this year, Anna (a cofacilitator of the special needs ministry) and I have been invited to speak to the church congregation a little about "autism awareness".  I haven't finalized any plans for presenting but doing some research on Youtube, I came across a video that emphasizes autism acceptance much more than autism awareness.  I pitched a video of autism awareness to Anna but she agreed that it was much more important to emphasize acceptance of the condition if we want to see positive change in attitudes toward those affected by autism.  So, we decided that instead of showing a video of what autism is, we will create a slideshow of all the wonderful things the children in Harvest, the special needs ministry are doing to praise and learn about God.  

The first and only walk I did was a virtual one during the pandemic because we could not gather.  I had a shirt that said "I Walk for Dup15q because I don't run". And a virtual walk was even better because  all I had to do was wear the shirt, sit on the couch and watch Netflix.  

But in all seriousness, we need to go beyond just being aware of what autism is to ways in which we show acceptance to people who have the condition.

1.  Autism awareness is knowing that 1 in 63 children are diagnosed and there is no known cure.  Acceptance is making sure advocacy for greater research is made to understand it better which one day help minimize debilitating symptoms.

2 Awareness is knowing that disabled people, especially those with cognitive disabilities, are the most discriminated subgroup of our country, if not the world, Acceptance is making sure they have fair and appropriate access to educational opportunities, medical care and rights for access to housing, employment and the opportunity to praise and worship God at their own developmental level.  

3. Awareness is knowing that words such a retard, "special", idiot, etc... are derogatory terms that is inappropriate to use for people with autism or other cognitive disabilities.  Acceptance is not using them to make fun of or put them down nor use them as adjectives in everyday language.  I've heard even doctors describe a difficult personality as "he's just very "special".  How we treat people with cognitive disabilities may just be a test from God to see who we say we are, is aligned with who we truly are. 

 If it is hard or uncomfortable for you to be around someone so different, that is OK.  No pressure.   We all live at different levels of understanding of God's purpose for everything so just be true to yourselves and acknowledge your own comfort levels.  Just don't be derogatory and mean.  Every child has a mom and dad whose hearts break when they are treated with cruelty and made fun of.  A simple prayer for their well-being would be much appreciated. 

4. Awareness is knowing that 80% of couples with autistic children end up in divorce due to the overbearing stress of caregiving.  Acceptance is showing compassion and advocating for the whole family to deal with their unique situations and lending moral support, as needed.  

How do I tie autism to my understanding of a loving God and my own spiritual journey? 

I've come to understand that a community who has a healthy regard for people with disabilities is one in which God's presence shines brightly. If you look at war torn countries, where killings and genocides run rampant, where there is much confusion and hate, you will not find children with disabilities flourishing, if existing at all.  When the Nazi's took power in Germany, the first group of people they exterminated were not the Jews but children with special needs because they did not fit their narrative of a "master race" of perfect people.  The devil must be afraid of children with cognitive disabilities to want them gotten rid of because despite all their flaws, inabilities and a dependence on so many others, these little souls help highlight all that is good in people to shine brightly. They engender feelings of compassion understanding, kindness, love and patience, qualities that dark forces want to extinguish.  When God made a clarion call for souls to go to Earth to be nonverbal, be considered less than fully human, and have little to no control over their physical bodies and its functions for His divine purpose, I'm sure not many souls signed up for the task.  It would be better to request becoming a doctor, musician, teacher, an actor anything but autism or intellectually delayed; but, the very rare and beautiful ones who raised their hands and said, "I'll go".. well, can you imagine what the heart of God must have felt at that?  

HCS-CH Field Trip to Heritage House, Santa Ana 4/5/23

 

World Autism Awareness/Acceptance Day April 2, 2023

"Awareness seeks to highlight how Other we are and emphasizes the differences and distance between our ways of being. Acceptance looks at commonalities we share and at the strength inherent in diversity."

"Awareness is simply realizing that someone has a challenge. Acceptance is engaging in a real conversation with them."

Last Sunday at church for International Autism Awareness month, the children blew "bubbles of kindness" to remind them that "although we may be unique, we all deserve kindness, love and acceptance". 

For this Autism Awareness/Acceptance month, I want to focus on how much awareness had made a positive difference in the lives of those who are differently-abled, autistic and cognitively delayed as compared to the lives of these individuals from previous generations.  Also, I want to emphasize how much the health of a loving, egalitarian and peaceful society lies in the presence and thriving of people with disabilities in it.

All over the world, throughout history, we have seen discrimination, harassment, lack of access to education and healthcare for people who are intellectually delayed and unfortunately, this trend still prevails today especially if the individual lacks strong advocates by way of parents or family in their lives. This group of individuals is the most discriminated in this country, if not the world.  In the past, people with epilepsy were branded as devil possessed.  In fact, the word "grand mal" which is the worst kind of seizure wherein the entire body shakes and violently gyrates is literally translated from Latin as "the great evil".  People believed those who suffered seizures were possessed by an evil spirit and were subjected to the most awful and tortuous treatments such as leeching and electrocutions, and worse.  In some Asian and African cultures, they were shunned by society as harboring bad luck and were not even permitted the opportunity to live.  Even just as far back as 100 years ago, parents with children who were deemed intellectually retarded were advised by physicians to place them into institutions, forget about them, have more children and move on with their lives.  The infamous  Pennhurst State School and Hospital comes to mind where a sadistic physician used punishment as so-called treatment and therapies and left many traumatized and even dead at the swift stroke of a pen on fraudulent death certificates.  In these sterile institutions, they were subjected to the worst form of abuse from doctors and caretakers with no one aware of their plight nor anyone to rescue them.  People in society didn't seem to care (or were unaware of the atrocities)  as they were treated as burden on society and expendable.  Many of the perpetrators went unpunished. When the Nazis took power in Germany, the first people they exterminated were not the Jews but intellectually disabled children as they did not fit into their narrative of a perfect race of people they were trying to create or believed themselves to be.  What did their lives mean to anyone?  In the space and time these souls occupied it is hard to see the great work God was doing through them. They required so much care and resources to keep alive. Many never spoke.  They had no control of their own bodily functions. How are they contributing to a better society?  

100 years later, I can emphatically say their lives and their suffering means the world to me, my family, countless others living with various forms of disabilities and their families.  All their suffering and pain were not in vain because my family has directly been helped and our lives made better by their experiences. Through the expose of abuse and violence (thank God for great journalism!), we now have doctors who no longer prescribe parents to abandon their children but rather, encourage them to nurture their children at home and advocate for equal access to education, medical treatment and therapies.  Parents are able to send their children now to local schools to receive fair and appropriate education at their own school districts.  Advances in adaptive behavior therapy allows for a more humane and effective ways to train behavior rather than by punishment.  A Disability Act has made into law special accommodations for them to be integrated in a more inclusive society.    Countries throughout the world envy and hope to emulate what the US has done on behalf of its disabled citizenry.  The United Nations has deemed people with intellectual disabilities are entitled to basic human rights.

None of this would have been made possible without the advocacy of people who came before us.  The children and adults who suffered at Pennhurst Institute are not forgotten.  Their suffering, imperfections and weaknesses has made way for God's power to be made closer to being perfect.

This is how God works.  Although we can't see how weakness can be used to do great works, all suffering can be transmuted to something that benefits others, if we are willing to take action and open our minds.  And that may not be evident in the space and time we inhabit right now as we try to navigate ourselves through endless therapies, doctors' appointments, fights with insurance companies, trying to tame intractable seizures but, I have to believe that somewhere, somehow it is all making a positive difference.  

People like Lucas have always been here and always will be here no matter how some people and ideologies will try to get rid of them.  They are emissaries of God's presence and Light in a healthy, loving and well-functioning society.  In their absence, you will find a dysfunctional society where wars, killings and chaos run rampant.   If you look at a war-torn society, a society racked with confusion, hatred, distrust, the first ones that are absent are very special people like Lucas. They are the litmus test of a functional and healthy society.  

What a long way this community has come to making a more equitable society for all!