intellectual developmental disorder

In light of the Betsy DeVos confirmation,

Some tips for how to help:

  • Call schools and ask if you can pay off lunch balances.
  • Find reputable after-school programs that need volunteers or financial donations.
  • Donate school supplies! Even cheap notebooks and pencils can make a difference.
  • Love the kiddos in your lives. Tell them they matter. Listen to their stories; refuse to write them off as kids who just don’t know anything about the world and are just being dramatic/millennials who are always glued to their phones and so on.
  • When in doubt, call your local schools and ask what you can do. Every school has different needs, but they all need our help.

My heart breaks for my educator friends.
My heart breaks for parents of K-12 children.
My heart breaks for underprivileged, disabled, and otherwise marginalized children who will not be able to access an equitable education over the next few years (even more so than they already weren’t), who will be told in word and deed that their mere presence in the system is a burden.
My heart breaks.

Dear Harry,
As I was watching a video on adults with physical/intellectual developmental disorders today morning, I couldn’t help but to think about you.


To be honest, you were an embarrassment to me growing up. I dreaded going out in public with you because of the stares I knew we’d get. And what bugged me especially was when you’d tap anyone you see and give him or her a high five. Okay, not even a high five. It’s like a low-five-slap-so-hard-i-want-to-chop-my-hand-off.

One distinct memory I have of you is in the 3rd grade, when I came home from school and found my room to be a paper party. There was marked lined/construction paper all over the floor, and you sitting among them with crayons in your hands. I yelled the living daylight out of myself and hated you sooo bad at that point. You were always really good at digging through my stuff and scribbling all over them, and I was always good at pushing you out of my room and closing the door on you while you looked at me with those really sad and confused eyes. Moments like these made me complain to mom, dad, and God like a stupid little brat about why I had an older brother like you and not a normal one who I could fight with, annoy the crap out of, and be overly protected by.

But as an almost-quarter-of-a-century-year-old woman, I more than completely understand why God has made me your little sister. Through you, I am constantly learning about patience, love, and compassion. I’m always humbled by your kind and pure heart, capable of bringing joy to everyone around you. (I’m not trying to write cliche stuff here. It’s really true. You’ve gotten people who haven’t smiled or talked in a while to do so again, even though you yourself cannot talk.) I’m humbled by your genuine love for people and your love for me, your selfish little twerp of a sister who doesn’t visit you enough. I’m humbled by your willingness to help others, whether they really need it or not.

These are the qualities that make a good occupational therapist — and more importantly a good person — and I believe that it is because I would otherwise be a total fart in the aforementioned areas that you are my older brother.


Til this day, I don’t really know exactly what your condition is or why you are the way you are. Mom keeps changing the story every time I ask. Or maybe it’s because I asked as I was growing up and she couldn’t explain it to me in a way my adolescent brain would comprehend. (Plus, the language barrier.) I feel dumb for not knowing, but I will ask again soon.
I will.

The more important thing to me, though, is not your condition or disability, but your human being-ness. I’ve always been self-centered and not thought about what you go through or whether you have/are even capable of having dreams or goals, but I hope as a future OT that God can use me in whatever way to help you experience full joy in life and ultimately in Him. 

I love you, Harry. I’m sorry for the way I was in the past and even the way I am now, but I am so thankful for you and I promise while we are apart to always keep you in my thoughts and prayers, and to do what I can to make you happy…

… because you are you and you deserve it.


Love, 

Your baby sister

Dear Harry #2 (7/3/13)

“… Til this day, I don’t really know exactly what your condition is or why you are the way you are. Mom keeps changing the story every time I ask. Or maybe it’s because I asked as I was growing up and she couldn’t explain it to me in a way my adolescent brain would comprehend. (Plus, the language barrier.) I feel dumb for not knowing, but I will ask again soon. 

I will.

The more important thing to me, though, is not your condition or disability, but your human being-ness. I’ve always been self-centered and not thought about what 
yougo through or whether youhave/are even capable of having dreams or goals, but I hope as a future OT that God can use me in whatever way to help you experience full joy in life and ultimately in Him. 

I love you, Harry. I’m sorry for the way I was in the past and even the way I am now, but I am so thankful for you and I promise while we are apart to always keep you in my thoughts and prayers, and to do what I can to make you happy…

… because you are you and you deserve it.

Love, 

Your baby sister”

{full letter here: http://ot-sku.tumblr.com/post/42495074143/dear-harry-as-i-was-watching-a-video-on-adults}

\\\\\\\\\\\\/////////////////////////

 
Dear Harry,

That was a letter written to you 4 months ago – and today, I could finally say that I KNOW. I KNOW YOUR DIAGNOSES.

God is a very funny God. He has impeccable timing and he likes to use that skill to say, “See, Sarah? I told you to have faith” and totally humble-bomb me at the most necessary times.

You see, when Mom told me the annual meeting with your social worker was coming up, I mindlessly asked if she needed me there to translate. She said sure. So today, I ran some errands and headed over to your house. Mom called and said she was running late, so I let the social worker and the owner of the residential care facility know that I’d be taking her place.

It is all thanks to God for tactfully – and graciously – placing me at LLU (the only school I applied to) for the OT program and allowing me to successfully finish my first year, so that I can fully comprehend everything that was being discussed, participate in the meeting by giving my own input and asking my own questions, and know wadahail a social worker does.

(I mean… what if this was a year ago. #inoneearandouttheother)

It is all thanks to Him that at the right moment, I glanced over at the social worker’s sheet that listed all of your diagnoses – and completely knew what each one meant.

HARRY KU

Age 29; 63 lbs

Born 3 weeks premature with multiple neonatal anomalies; severe scoliosis

Diagnoses:

-moderate mental retardation 
[FYI: they shouldn’t be using the term MR anymore; it’s changed to “intellectual developmental disability”]

-cerebral palsy 
[I might have heard these two words like… ohhhh maybe 203958092 times the past year.]
-autism 
[this one was kind of a shocker because I don’t see the characteristics of it in you at all. AT ALL. You are a thousand times more social than I am, you probably don’t have the capability of being angry or aggressive, and your loving gaze and smile can pierce through any soul.]

{short video clip of him here: http://www.youtube.com/watch?v=X-_KQDZhpFs&feature=youtu.be}

-developmental expressive language disorder 
[the only thing you can say upon cue is “umma” (Korean for “mom”)]
-dwarfism 
[When I was in middle school and I tagged along to one of your doctors appointments, I heard the doctor say, “Harry has the bones of an 8-year-old.” That’s all I knew about you after that, and all I told people when they asked what your condition was.]

You don’t know how life-changing and liberating it is to finally know. I now have the ability to confidently tell people what you have. More importantly, I now have even more motivation to study hard in school – to gain the expertise necessary to serve you better as your sister, directly (using OT if need be) and indirectly (discussing with other professionals better ways to increase your quality of life).

Again, I’m infinitely thankful to God for you and the impact you’ve made and will make in my life. I can’t help but to think that the world is missing out on you. 

We love you so very much, and God loves you so very much more.

Sarah