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!

History Repeats Itself.

 I have always been fond of hearing music coming from afar, perhaps from another room or faintly heard on the radio.  It trains the ears to listen more intently and focuses my mind to hear it like a memory of long ago. I get a visceral otherworldly feeling especially if it is an old tune and it can trigger a pang of melancholy in my heart.  A similar sensation happens while experiencing a warm sunset in Autumn as I meditate on shadows of leaves blowing on a wall. What's even more beautifully melancholy is when I hear sweet innocent voices of little children singing, off key, during a church service or school performance.  I remember attending a public Evensong at the former Crystal Cathedral in Garden Grove and hearing little school children singing praise music totally off key and thinking how inappropriate the setting was for their flawed performance.  One would expect a grand choir akin to that I heard in York Minster in England while I was studying abroad.  Those children were like professional singers whose voices were as impressive as the grand cathedral of their venue.  I noticed a sideward glance of someone who looked like a tourist from Europe rolling their eyes and looking quite unnimpressed by the childrens' performance.  He may have been expecting something similar to what one hears in grand cathedrals of Europe.  But, I so enjoyed their sweet voices and their innocent excitement at being on a "grand" stage.  How sweet it would have been to hear the children singing off key, in their excitement in a smaller, cozier setting.

As I listen to my little 6 year old boy practicing piano in the other room, my mind drifts to memories of my father and the stories he told us about his family's travails during the Korean War.  He would tell us how while they were starving due to food shortages, the American GI's would come by in their jeeps and throw mysterious dark bars of sweet and delicious "food" as they drove off.  He found out decades later that it was Hershey's chocolate bars. 

His older sister would recount stories of heavy loss from the war including the loss of 4 siblings; one, just barely 15 years of age made to hold a rifle and march to the Angang river to fight the oncoming North Koreans and Chinese and how shell shocked and traumatized he was from the experience.  He did not make it out alive from the war.  My grandfather, as told to my mother from her mother-in-law, was a habitual drunk who would oftentimes be found passed out in the forest unable to make it back home from a drinking binge and arriving with mosquito bites all over his body.  Legend has it that he was raised by a mother whose temper was so fiery that she could, in a fit of rage, jump from the living room to the front gate in one lunge. It makes me wonder if mental illness and addiction was something that was passed on from generations back.  My grandfather was branded as being wanted for treason against the Empire of Japan during the time of Japanese colonization of Korea had to flee Korea in the dead of night to the Philippines to save his life. Little did he know the Japanese were there, too. In reality, I wonder if he was not so much a nationalist resistance fighter but a loud-mouth drunk who said inappropriate things at the most inappropriate times.  Is it defiling my ancestors by saying such things?  On the contrary, I appreciate them more as they shed so much light into why my family is the way they are now, in this generation.  My grandfather passed away when my father was just a little boy and unable to care for the three surviving children, my grandmother sent my father away to be taken in by his uncle's family to be an apprentice to learn the trade of photography but in reality, he was treated more like a house servant.  My father always resented his uncle and his wife who showed so much favor and love to their only son, my father's cousin, while he felt unwanted and unloved.  In his adult life, he was also an alcoholic who drank his livelihood and marriage away.  My mother would rationalize his physical and verbal abuse towards her to the fact that he had an upbringing lacking love and affection and not because he was a bad person, a rationale I had trouble accepting. But with age, maturity and life lessons, I see how unresolved emotional pain can fester and ferment in the heart then be explosively released onto the most important and loved people in one's life.  The boss abuses the employee, the employee goes home and abuses the wife, the wife hits the children and the children in turn kicks the dog. What is the best way to stop this cycle?

When the Japanese left Korea after the colonization, many of its citizens left behind their livelihood.  My father's uncle received all the camera and photography equipment from them as they fled back to Japan and so started a photography business which my father also took up as a successful profession and was at one point getting yearbook contracts from many high schools in his town before he drank it all away.  My aunt would relate stories of how patrolling Japanese soldiers would play with the children in the streets and in particular show a fondness for my father as he said and did very cute things.  Many of the soldiers were using the children to extract information about their family lives, where they hid their wealth such as silver and gold and to find out who was speaking ill of the Japanese occupation.   My mother told me of how her older sister, in her innocence and naivete, led Japanese soldiers to her backyard where my grandparents buried their silver and gold.  For some reason, the soldiers did not confiscate the precious metals but counseled my grandparents to bury it back and not to tell anyone they had it. Who knows why they didn't confiscate it but it sure does demonstrate the humanity of people.  I'm sure those Japanese soldiers would rather be in Japan, watching their own children grow up and building up their own livelihood than occupy a country that disliked them and wanted them out and resented their superior's orders to use children to extract information.  I wonder how much guilt my aunt lived with all her life for what she did.  She was only a child and didn't understand the guiles of adults. What a way to lose the childhood innocence of trust and faith in humanity.

This world moves, twists and undulates around a spiral of pain, loss, suffering, disease, war, famine, drought, death as well as love, peace, kindness, learning, redemption, relief, hope.  Sometimes, it's all just a little too much to bear, isn't it?  Where is this spiral leading to? What is at the end of this seemingly never-ending spiral?  I heard a Nihilist quote, "If nothing really matters, then the only thing that matters is what we do" because our actions (and just as importantly, our thoughts) shape reality not just for ourselves, but for others, too.  

I pray humanity will choose wisely their thoughts and actions.

Clinical Trial of some FDA Approved SSRI's for treatment of seizures in Dup15q Syndrome and serotonin/dopamine supplements

An unbiased drug screen for seizure suppressors in Dup15q syndrome reveals 5HT1A and dopamine pathway activation as potential therapies - PMC (nih.gov)

How fascinating and clever is this research study done to find already FDA approved drugs to treat seizures in Dup15q Syndrome!!! This bypasses drug discovery starting from scratch which can take decades to create the drug, do clinical trials and then get FDA approval, time my son can't afford to loose.  This group must have felt the urgency of parents to find seizure treatment and bypassed all that work and went straight to a databank of already FDA approved drugs and engineered drosophila flies that mimic Dup15q Syndrome and screened them for seizure reduction against a variety of drugs.  It turns out that drugs that showed most promising belong to a class of antidepressants notably Mirtazapine (trade name, Remeron).  In jist, these drugs modulate serotonin levels in the brain much like SSRI's. The mechanism of action is by stimulation of serotonin receptor 5-HT1A while inhibiting another receptor 5-HT2.  They showed that if 5-HT1A is inhibited and receptor 5-HT2 activated, the seizures get worse.  The results showed over 55% reduction in seizures with Remeron followed closely by Lyrica and wellbutrin.  The principal investigator stated in an interview that a new antidepresant drug trintellix/Brintellix may have more specificity to a target site than Remeron!  That is exciting and promising news!  About 10 years ago, I suggested to a parent support group that given the symptoms so many with the syndrome experience such as anxiety and GI issue that serotonin levels were low and maybe SSRi's could help with the syndrome, although I wasn't thinking of seizure control at the time. I considered adding 5HTP or other serotonin supplements to Luki's diet but gave up pursuing the idea because he was so young at the time and I was already experimenting with DHA, accupuncture, CBD oils, creatine, CoQ, etc... I wonder now how his seizures would have been controlled had I started him on the supplements.  It is really hard when there is no one else giving it to their children and all I am going off is my hunches and intuition with no confirmed scientific data.  I had to wait 10 years for that! I need to listen to my intuition more often! The thing is, when I first got the diagnosis, I was in fight or flight mode and we've heard of people who obtain supernatural abilities and strength in dangerous predicaments.  There have been stories of mothers able to lift heavy trucks to save their babies in danger.  I think in the beginning when I was in the flight or fight mode, I had so many ideas come to me (not so much now, I've grown accustomed to the condition) most of which I had no ability to pursue.  Had I gone to our neurologist 10 years ago and requested SSRI or Remeron for Lucas, they would have labeled me as "that crazy mom" and shrugged me off.  I also remember a lively discussion with another mom linking sodium channel modulators in the brain of Dup15 to control seizures.  I never followed up with it but now I wonder if there is something do it.  Maybe I need to wait another 10 years for research to make the connection...

It’s so ironic that such widely used medications right under our noses may be potential treatments! I’ve always felt shooting random AED’s without actually understanding the underlying pathology is missing the mark and may do more harm than good - or at most only serve as a band-aid for a bigger problem. We need a med that works like a key to open a lock, something specific to this disorder rather than using a hammer to break open the lock which is why I prefer to live with the few seizures he has at night than add another AED or two. I worry these meds will irretrievably remodel his brain chemistry over time and do more harm in the long run. I wish clinical trials for trintellix can happen soon. I hate seeing so many drug commercials on tv but Trintellix is so familiar to me from the ads.  The study suggests Trillentix/Brillentix may be more specific than Remeron. If Remeron reduces seizures by 50%, I wonder what the percentage reduction will be with trillentix!

For 3 nights, we have had Luki on dopamine/serotonin supplements. I haven't started the 5 HTP, yet as I am trying one at a time.  The last two nights, his seizures have not reduced in frequency, but they seem to be milder.  While on most nights he thrashes about in bed with arms flapping and legs kicking; after the supplements, he no longer kicks his legs. On his first seizure at 1 am, he just jolted up and stared off as if in surprise.  Usually, he will thrash about.  This morning he had another one and we noticed that he did not kick his legs but just flapped his arms.  Coincidence?  We will wait and see.  The dopamine/serotonin supplement needs to be taken for 5 days then off for two days. I am a bit concerned that the data shows only 33.3% seizure reduction with serotonin itself versus over 55% reduction with Remeron. And how the heck does an eye drop dorzolamide reduce seizures by 50%? And meclizine, an anti-nausea medication reduces seizures by 43.8%??   Although Felbamate (50% reduction), works well for some individuals with Dup15, we have not had much luck with it. The results kind of seem to be everywhere and nowhere.  

I only give Luki half the recommended dose of the serotonin/ dopamine supplement and only at nighttime.  I break open the capsule and mix it with his yogurt. I will also present the data to his neurologist to see if he will be agreeable to prescribing Remeron.  Although, prescription medications have their side effects, too one being increased thoughts of suicidal ideations.  It baffles me how an antidepressant actually makes you want to kill yourself???  Also, starting and stopping SSRI's need to be done judiciously and titrated carefully.  If the supplements do their magic, maybe I don't need to get prescription drugs.  Let's wait and see what happens.  

*******

Day 4 update:

On day 3 I reduced his night time dose of lamictal to half and skipped his morning dose.  Bad idea.  He woke up crying for about 5 minutes.  It seemed like he was having pain (headache?).  He also had one of his usual "wake up" seizures.  Maybe taking away the lamictal was too soon? I will give him his morning dose and only half his night time dose and see what happens.  I am keeping him home today to monitor more closely.  So far so good.  He is back to his cheerful self and ate a very good breakfast.  

Day 5 update:  No morning seizures noted.

Day 6 update:  AM seizure with flapping and kicking. 

Day 7 update:  day 1 of 2 OFF day of supplement.  Wake up seizure noted.

Day 8 update: Day 2 of 2 OFF day of supplement.  Wake up seizure noted. 

Day 9 update:  Took supplement at night.  No morning seizure on day 10.  Giggling noted around 2 am. 

2022

As I bid farewell to 2022, I say adieu with some bittersweetness but also with some relief.  It has been an amazing year of travel adventure for the family as we stayed at a oceanfront airBNB at Oceanside for Gabriel's birthday and went on an amazing cruise to Alaska.  It has also been a busy year for Liam as he has graduated from mommy homeschool Abeka curriculum and started kindergarten at Heights Christian Elementary school.  He has also had quite a busy year of extracurricular activities since the pandemic lockdown has lifted.  He finished a dance class, went to summer camp at Heights, went to Lego Camp for a few days in the summer, swam throughout the whole summer and is now in level 2 and hopefully he can continue on this summer.  Through church, he participated in basketball clinic, golf class and soccer.  He even took 6 weeks of yoga for children through the community center.  He also is finishing up his beginner's piano class and had his first recital at a hall in Mt. Sac College. Liam enrolled in cooking classes as well as Chess master through his school and we made tons and tons of Christmas cookies for the holiday.   Lucas went kayaking and paddle boarding for the first time and did great!  He has always loved water. For Halloween, Liam went as an angel and Lucas as Spiderman.  Lucas is on this last year of elementary school before starting junior high next year.  We are lucky he found a really great 6th grade teacher who is working with him and showing me things I didn't think he could do but is mastering in the classroom such as matching letters and numbers!  His seizures are still at bay with 1-2 occurring almost every morning as he wakes up. 

 Liam had his first school Christmas concert where he fell so hard as he tried to get down the steps that the whole audience gasped with concern.  Luckily, he was not injured and said his line "An angel appeared to Joseph" like a pro. He dressed as a cowboy for a school cowboy themed day and I am sure everyone thought he was just adorable, I know I did.  We spent Christmas with Gabe's parents and visited the Cathedral of our Lady in downtown for mass and surprisingly bumped into the priest who married Gabe and I.  We learnt that he has been promoted to Monsignor and is serving at the cathedral.  Seeing him was such a beautiful coincidence and it was the best Christmas present Spirit could have given me.  For dinner, we did something unconventional and had dinner at Spire76, the top of one of the tallest builings in downtown Los Angeles.  The lights illuminating the city was more beautiful than Christmas light shows we've paid to see and found it awe inspiring to see the city change so much (for the better) over the 42 years since I've been here.  We then visited The Bloc where they had some beautiful lights and show for free and took some memorable family Christmas pictures! After Christmas, the family went to Las Vegas and stayed at Paris hotel for some good food and relaxation.  We had an extravagant dinner at Gordon Ramsay's steakhouse and visited Bellagio to view their beautiful Christmas decorations in the atrium.  In the new year, the family had dduk-guk and went for a walk at the Sequoia forest at Carbon Canyon Park then went to Mt. Baldy for the kids to play in the snow.  New Year in 2023, we spent a quiet day with Gabe's parents and I took all the ingredients for dduk guk and made it at their house.   Liam bowed "sebae" and received money from his grandparents, a tradition I am trying to teach him every year. 

Overall, it's been a great and memorable year.  The only downside has been the mess in the cryptocurrency world where my investments totally tanked compared to the previous year.  There has been scandals and the collapse of reputable (or so we thought) centralized exchanges such as FTX and Celsius and I've lost money with the collapse of a certain stablecoin. Although not directedly tied to FTX, some of my investments are locked for withdrawal through its contagion.  But, I am still hopeful there will be an upturn eventually but not necessarily in 2023.  I have hope and conviction that cryptocurrency is good for mankind and that it will help humanity to be on a level playing field to get ahead.  

 

Ahn Family Adventure Series: Alaska, The Last Frontier! Royal Caribbean Cruise Aug 15-22, 2022

 

 Alaska, The Last Frontier!! 

Glaciers, salmon streams, crab feasts, s’mores, bald eagles, bears, waterfalls, Salmon bakes, panning for gold, Tongass National rainforest, picking Black- blue- rasp- and huckleberries on hikes, totem poles, native dances, whale sightings, Pike’s Market, Space Needle, and Timbits at Tim Horton’s!! It’s been so much fun!  Seattle-Snoquolmie Falls-Ketichan-Sitka-Juneau-Mendenhall Glacier-Victoria, Canada 

If you're a mom, a family vacation is never really a vacation.  You are still working as a team leader, a coordinator of events/meals, the enforcer of the itinerary and thinking of a thousand plans, back up plans and back up for the back up plans and making lists of what to do just in case. It can be exhausting and sure, it would have been easier to just take the family to the beach or somewhere local for summer vacation but when did I ever do things easy?  Besides, I needed to check off a few things on my bucket list and adventures need to be taken while you're still able bodied because I've seen a lot of older retired folks on the cruise who were too frail for excursions and took head-tilted-back, wide-opened-mouth naps at the pubs.  That may be me one day, but not today. 

Traveling with Luki was relatively easy and we even did most of our excursions without his special needs stroller.  I've recently learned about a program called Autism on the Seas which provide respite care and diverse activities for individuals sailing with autism on select cruises.  We didn't find any such services on our sailing and decided not to leave him at the Ocean Adventures childcare for his age group because they just didn't have a 1:1 staff to be with him.  This wasn't a big deal to me because I loved having Luki around us all the time and found joy in seeing his wide-eyed wonder at everything he saw. 

Luki. This kid is amazing! Despite his disability he did Alaska like a pro! He may never go to the best school but he still gets to see and experience the world and learn. He kept up beautifully with the rest of us during hikes, shows, meals and bus/boat excursions. He was so quiet and so in tuned with the surroundings and it was wonderful to watch him like that. He even joined in on the native dance show during our excursion to Sitka (see video below for Sitka).

I am so grateful to fellow travelers who showed much compassion and understanding to him. To the lady sitting in front of him in flight who wasn’t bothered by his occasional screams, kicking her seat and said he did well at the end of the flight, thank you. To the couple sitting next to us at the restaurant who didn’t mind his occasional outbursts (he was just excited) and even offered to take our family picture for us and said my kids are a joy, thank you. This is the power of what disability awareness can do. I am so proud and grateful to all of them!! Another mom with a Dup15q child said when her son kicked the seat on an airplane, the women seated in front turned around and tried to hit her child. This teaches me to never take any pinch of kindness for granted.

People like Luki are not meant to be kept aloof from society. They need to be seen at the mall, the grocery store, parks, sporting events, schools, and even while traveling. They may get hated, they may get loved, but they need to take part in the world. And as his parent, I also get to bear witness, in front row seats, if you will, to the highest virtues of humanity as well as the basest.

Tae makes sure Luki is looking into the camera for photos

I give Best Little Brother Award to Tae for his awesome care of Luki during his Alaska trip. From reading about Alaska to Luki, to making sure he is looking at the camera when taking pictures, to taking responsibility of pushing the stroller (by his own volition), helping to feed him during meals and being a great companion. He always looks for Luki when he is not around and Luki’s face lights up when Tae is nearby. Tae sees his older brother like a warm security blanket. I thought Luki will need his little brother more but I’m realizing Tae needs him just as much. The special bond I see blossoming brings me to tears.

Tae keeps Luki from eloping during photos

Luki loves his little bro

Tae says, "I've got this!"

A Brother's Keeper

 

Tae loves to get shaved ice after his summer day camp lets out at mid-afternoon and I indulge him once a week at either Hawaii Time or Snowy Village which makes amazing Korean shaved ice specialties.  Lucas is still on his summer vacation and after playing in the pool and backyard all morning, I took him to pick up Tae and to enjoy a treat at Snowy Village.  With Lucas trying to escape my grip and toppling over the tip jar as I pay for our treat, I finally manage to get him seated in his adaptive chair.  He gets very fidgety in his seat and although secured in a belted adaptive chair, he will rock the chair which makes a noise when the chair leg hits the floor.  I noticed a Korean women with her young daughter about the same age as Lucas seated two tables away and felt a weird vibe coming from them.  My back was turned towards her so I could not tell if she was staring at Lucas but I sensed her annoyance whenever the chair made a noise.  She spoke in Korean to her daughter saying, "how noisy" or translated in another way, "what a ruckus".  Honestly, it wasn't that loud.  I wanted to lash out and ask what the hell is so loud but decided not to cause a scene.  I wonder how Korean society views people with intellectual disability and what our lives would have been like if we lived there.  Would the restaurant owners ask us to leave for being loud?  Would there be sympathy for us or for the annoyed lady.  Do they even have a law for disability rights protection as we do in the States?  

I am currently watching a gem of a Korean drama called Our Blues.  I cried and laughed at almost every episode and found it to be so authentic in depicting Korean people's spirit so well. I once heard that it's difficult to distinguish whether two Koreans yelling at each other are actually arguing or are the best of friends.    I would characterize Koreans as generally being very blunt to the point of being offensive, but without guile and although they don't show affection outwardly, they have deep love for each other.  They can be loud, loves singing, dancing and drinking, full of "han" and have quick brilliant minds and can be very not politically correct.  There is a saying that a Korean mother shows her love not by saying I love you but by asking, "Have you eaten? or by shoving a wrapped ssam in your mouth.  This series reminded me of all the extended family members I interacted with until the age of 7 when we immigrated to the US.    

In one episode, a poignant scene depicts the dilemma of a sibling to a twin sister with Downs Syndrome and the struggles she faces as she takes on the responsibility of being the sole guardian to her disabled sister after both her parents tragically pass away from a car accident
.  She worries her boyfriend would be put off by such a responsibility and explains to him the challenges she has faced in the past and how difficult it has been to be her sister's caretaker

   Watch here. 

I wonder what our lives would have been like if we lived in Korea with Lucas disability....  One thing that struck out in this scene is when she puts blame and responsibility on families who send their disabled children away to secluded group homes, away from interacting in public life as the main reason why people stare at disabled individuals like those with Down Syndrome.  It seems natural, if you have not had exposure to something, curiosity naturally makes people stare and gawk.  Her solution is to have more inclusion and exposure of people with disabilities in the community so that their presence no longer feels like an oddity.  Her complaint is that there are not enough resources and support for families to take care of them in their own homes when they must leave to work and make a living.  

I know many parents that have kids with intellectual disabilities share ideas of a group home or communes in the desert or even a farm far away where the kids can live out their days in remote settings.  Isn't there a saying in English about sending grandma off to the farm and it being connotated as having her die or be killed?  I dislike this idea because it defeats the whole purpose of why these precious souls are here on Earth in the first place.  They are here to make people feel uncomfortable with their presence.  They need to be seen in the communities where they live.  They will get stared at and ridiculed but their mere presence is their divine ministry.  Unlike a preacher with many words, their mere presence delivers the whole sermon.  

Here is documentary based in Denmark of a sister to a child who is deaf, blind and has autism.  She also grapples with the issue of who will take care of her brother once her parents pass away.  

He's My Brother | POV | NJ PBS (njtvonline.org)

Tae was not conceived to be his brother's caretaker when Gabe and I are no longer here on Earth.  I want Tae to pursue his own dreams and ambitions in life and fly freely and loftily without having his ankle chained to the burden of caring for Lucas.  It would be amazing if he stayed close and chose to be his guardian but I will not burden him with it.  It makes me sad to think that he would not choose to be a part of Lucas life but it would crush me even more to think that he forfeited his dreams to spend the rest of his days changing Lucas diapers and feeding him.