Random Acts of Violence Against the Disabled.

Now, I know there are a lot of crazy (er...mentally ill) people in the world who are capable of outrageous things.  In my psych rotation at nursing school, my clinical instructor deemed all violent actions as being the product of mental illness.  I asked him then if all people in jails should be labeled mentally ill and he responded, yes.  It's one thing to have compassion for people who are out of sorts and are in need of help, but it is another thing to dismiss violent acts as just being an illness and can not be held accountable.  Granted, it is very hard to get someone with a mental illness to seek help.  They would argue that it is the world that is crazy, not them.  And, when they are lacking in social support, it is so easy for them to fall through the cracks of the system and land in jail or become homeless.  Or, they pose a threat to public safety as the case below demonstrate.

Montrealer With Autism Violently Attacked At Angrignon Metro Station

This story really hits close to my heart because this young man shares the same genetic condition as my son. I shudder to think such as thing happening to L.   Being in a disabled state leaves one in the most vulnerable position with no faculty to fight back and defend oneself.  They remain at the mercy of other people's protection. On that day at the metro, Richard afforded others the opportunity to demonstrate the highest virtues of their humanity.  What a gift that is to the world!  And, people beautifully stepped up to the plate.  Jesus who preached nonviolence said that if one strikes you in one cheek, offer them the other.  Who can truly do such a thing in their right mind?  I don't think I can.  It is human nature to strike back in defense and it may perhaps be an involuntary reflex.  It would take someone angelic to follow this command. People like Richard and Lucas certainly belong in that category because when they arrive at the pearly gates, they could honestly say that they lived their lives clean and pure, never having harmed anyone or harbored malice in their hearts.  Perhaps, this is why these souls incarnated into the world in a disabled frame of mind in the first place -  because they wanted to experience living in the physical body without having any sin and to afford others the opportunity to experience their own compassionate hearts.

Surely, it would be easier to accomplish living completely sinless in a disabled frame of mind than with the mind fully intact.  Why is it that at times, it is human nature to seek out the weak to attack. Is competition the only absolute in the natural world? This also happens in the animal kingdom, too.  Those like Richard and Lucas don't belong in the animal kingdom...They belong in the divine and angelic kingdom for what they have chosen to take on and offer in this lifetime.

A Journey of Love

It is 12:30 AM and I am wide awake after drinking one too many lemon iced tea at the local Chinese Cafe with dinner.  So, I am here to write down some thoughts about love and how it sometimes manifests through our actions in a rather illogical way.


 Lin Yutang, an erudite scholar, writer and philosopher whose writings have immensely impacted my time traveling in Korea and Japan in my late twenties, once wrote that when he passed a beggar on the street and knowing full well that the beggar was an alcoholic who would squander the donated money in his tin can on booze and other licentious activities, gave money to the poor guy anyway.  Perhaps, it was a selfish thing to do and an act that relieved his own discomfort at the sight of someone in such a sad shape and he may, unwittingly, have been a passive enabler for the addict. Lin Yutang's reasoning for doing so was that it was an act to alleve a suffering, however temporary it may be and we must all do something to help relieve suffering in others by whatever we can do at a particular moment when we have the window of opportunity to do so.   Lin claims to be an atheist, but as a son of a Christian pastor, I know his Christian charity never left him.


In the movie, Splendor in the Grass, when the main character, Deanie, has a mental breakdown and is instituted for psychiatric care, her parents wrestled with the idea of taking out their retirement money to help pay for her rehabilitation.  The parents emptied out their retirement investments for her care because they loved their daughter so much that they placed her well being before their own in old age.  In the end, this decision worked out for the best because the Great Depression left people's retirement funds empty and bankrupt.  When one does something for love, you can't really lose.

When my dad was in the terminal stages of liver cancer and had only months to live, he requested that we buy an herb called Fucoidan for him because he was convinced that this magical exilir would cure his cancer.  Perhaps, it was the buildup of ammonia in his brain or the irresistible informercials that claim outrageous results, but he desperately wanted one of his children (my two brothers and I) to buy it for him.  It was not cheap but I decided to spend a grand just to give him peace of mind.  Who cares that it doesn't work - they were mostly seaweed capsules harvested from deep in the ocean; but what mattered was that in his dying days, he knew one of his children cared enough to get it for him.  My brother thought it was a waste of money and that I was being stupid. I think he is the one who doesn't get it.

There are outrageous and sometimes not-so-outrageous claims by herbalists and alternative medicine advocates that claim that their supplement or essential oil or diet or therapy method will cure a child of autism, CP, seizures, chromosomal abnormalities, tics, ADHD, etc..etc.. Honestly, when I read somewhere that an essential oil is going to cure my son of his Dup15q, at best I hold a healthy skepticism and at worst tilt my head way back and bellow out a hearty laugh.  I know these can help alleviate some of the symptoms, some greatly more than others, but I am not really betting on them "curing" him.   I remember another parent get irate that these expensive "snake oil" methods are even being considered by other parents. She had a point.  I've seen documentaries where some parents take out second mortgages just to pay for therapies and supplements for their child with autism.  And, although people claim Big Pharma is just out to make money and really does not have the best health interest of a patient, many in the alternative medicine field are just as money driven .  When a family has a tight budget and none of these alternative methods have clinical evidence based proof of efficacy, would it be prudent to squander money on purchasing them?

Having said that, I don't think anybody should shame a parent for choosing to go the alternative route, even after having all the information presented to them.  You see, it is an act of love for their child and who has the right to dictate how a parent chooses to show their love? If they want to spent $500 a month on therapy for their child even if said therapy has no "evidence based proof of efficacy" because the doctors have no answers and the parents feel they need to do something, then let them.

There is no cure for Dup15q.  The doctors have no answers.  Research develops at a snails pace and the parents feel their hands are tied.  There is no right or wrong way to show heart-felt love and when one does something for love, you really can't go wrong.  Afterall, that is what this disability journey is all about, Love.

Review of Products that Make Living with Dup15q a Little Bit Easier.

A blogger once commented that most blogs she reads sound like endless rantings and compared them to negative thoughts that seemed to have vomited onto the pages of a blog.  I try to keep what I share to be positive, insightful and helpful as much as I can but I know it is also cathartic to release a lot of negative garbage in my head in hopes that writing them down scapes all the crap out of there and also maybe find someone to commiserate with.
This entry is meant to be a helpful one as I took the time to share products that have made living with Dup15q a little bit easier because the struggle is real and anything that helps us get through the day easily and peacefully is a God send.


1.Keekaroo chair This chair with his seat belt is where Lucas eats his meals.  It is adjustable, grows with the child, comfortable and sturdy.  We have tried booster chairs in the past but they were just not safe as he would push back tilting the chair for a fall or would stand on his chair and try to climb onto the table.  The seatbelt definitely helps keep him from wandering off.

2. Tomato glasses : Tomato Glasses Frame Specialized for Kids (TKAC1) : non-slip, adjustable, ultralight, & safe (FDA Approved).  These frames were invented by a Korean father of a child with poor vision. Neither Kaiser nor our VSP provider have accounts with the distributors for this product (perhaps because they are a Korean company?) so I purchased them online at Amazon and hope to get reimbursement once we put the prescription lenses in them.  It has many adjustments for comfort - much appreciated as L flings them off all day long. 

 About the Product

• Specialized high quality frames for babies and kids
• Adjustable ear tips
• Adjustable nose pads height
• Detachable headband, extra ear tips, & nose pads are includes in a soft case

The best glasses for L so far.  We have tried the wire framed "Dilly Dally" brand which are awfully cute but don't seem as comfortable as the plastic frames like tomato glasses.  The Miraflex glasses don't accommodate for the flat nose bridge of most little children and I often find them sliding down his nose. They are, however, very durable.  

We were able to have our optometrist insert an extra nose piece from the Tomato glasses onto the Miraflex frames.  It keeps the frames away from his eyelashes because without them, the lenses are literally touching his eyes. No wonder he keeps flinging them off.  

Tomato nose piece on a Miraflex frame.

3. MacLaren Elite Stroller
Lucas still fits into his other regular strollers we had like the Peg Perego and MacLaren for toddlers but since his legs got longer, he would continually stop the stroller from moving by placing his feet on the ground.  We hope to use this stroller for a long time to come.  We were able to get a letter from our pediatrician for need and received reimbursement through our medical reimbursement account.

About the Product

• Polyester
• Imported
• The major elite transport chair is designed for children with special needs, weighing up to 50 kg/110 pounds
• The stroller is equipped with a 5-point harness, padded seat, and detachable foot rest, coordinating accessories can be added for further support
• Lightweight at only 7.5 kg/16.5 pounds, it's easy to steer, carry, and fold

4. Sensory chew necklace (click for detail)

L still bites into his fingers quite a bit.  His left index finger is chronically swollen from all the biting.  The chewies help redirect his sensory fix from his finger (and hand) and we have gone through many of these.  There are definitely ones he likes better and I think the silicone ones that are softer are preferred over the hard plastic ones (dark blue) although the latter has ridges for greater texture.  

About the Product

• Made of tasteless, odorless silicone that is ideal for chewing. Nontoxic, FDA-compliant food-grade silicone. BPA, PVC, lead, heavy metal, latex, and phthalate free.
• Suitable for Autism, SPD, sensory seeking, oral motor needs, or teething)
• Silicone is easy to clean (dishwasher safe) and naturally resists the growth of bacteria.
• Made of tasteless, odorless material that is ideal for chewing. 2.75" long, 2" wide, .25" to .5" thick
• 30-inch black cord with brushed satin finish and breakaway clasp, can easily be 
• shortened to your preferred length.

These chewies aren't cheap but I found L really likes a few soft ones from Babies r Us. 

 These are definitely easier on the wallet.  RazBaby Fruit Teether

5. Chinese car seats for kids (click for link)

I found these by happenstance and am forever grateful to have found them.  Seriously, sometimes I think someone in heaven is really helping me out!!  It is a must for when we dine out.  These are used as car seat for kids in China but we use them on chairs at restaurants.  It has a 5 point harness to keep him in place.  As he gets older, he is better at trying to finagle his way out but still, it buys us time to stop him from wandering off.  And, they are cheap! I bought this one for $15 on ebay.  We bought a $300 GoTo Seat but ended up never really using it because it it too cumbersome to carry.  We may use it when we need to get on an airplane  and hopefully the airlines will allow us to use it in flight.

Oh, and those black things on the bottom of the chair? Those are bed risers so that he is eating at our level and is not peeping up at us from the edge of the table.



An alternative to bedriser is a product called the Kaboost which basically does the same job.  I found the bed risers were easier to insert than the kaboost.


And this is what it looks like when he is on it.

Also, we must have a DVD player and noise reducing headphones so he stays calm.  He only watches a few of his favorite DVDs over and over and over again.  When we introduce new ones like Veggie Tales and Sesame Street, he loses interest.  The videos must be simple, no plot, not a lot of talking and be very colorful.  His favorites include  PreSchool Prep series for numbers, colors and letters as well as a few Baby Einstein videos.  It also helps if there is a lot of music in it.  We recently purchased the Ellipsis for kids for a discounted price after renewing our cell phone.  We haven't tried it yet but hopefully once he starts with autism apps it will come in handy.




EZPZ food tray : We don't use this tray as much but it really stays in place so he can't swipe it off the table.



Table edge protectors

We protected the sharp edges of the stairs with table edge protectors (Gabe's idea).  L's gait is still not the best and fall risk precautions are always taken.



Cloth diapers: Motherease and The willow store diapers:  Recommendations from two Duper moms.  Love both brands but the bamboo terry material from Motherease is soo soft.  I know it must feel more comfortable to wear than the scratchy plastic disposables he has been wearing so far.  The Willow brand runs a bit small but it is one size and can be used from infancy up to 45 lbs.  I am hoping these will help with potty training or at least, help him to recognize the coldness associated with peeing.



Converse High Tops:  Honestly, sometimes my day revolves around putting his shoes, socks and glasses back on.  He really has a talent for taking his shoes off just by stepping on one foot on top of the other.  I have invested so much money on shoes but the one that seems to work and the one the teachers are always happy with are Converse high tops.  He really can't get out of these although with some persistence, he has taken them off, too!  It's a hidden talent!!

Recently, I purchased the  Gold Pigeon sandals  that has multiple adjustments for better fit.  I am hoping these will work out for the summer.

Scout:  This is his absolute favorite and cannot live without!  We are on our third Scout.  Hard to clean but I bought this small steam cleaner that zapped the out the cheesy smell and stains!  I applied just a small amount of mild nontoxic detergent with a toothbrush before steaming.  We also needed to use dark duct tape for the light up button because L would put his eyeball right against it burning his eye out.

In the past, we have tried products like the Spio Vest (spioworks.com) , Dafo orthotic braces, soft helmets, knee pads and walkers.  The knee pads and the walker were definitely helpful when he was just starting to walk and he would have numerous falls.  Not sure if the DAFOs, the helment and spio vest made much difference for him.  

Are there any products that has helped you with your Dup15q or special needs child?  Please, feel free to share! 

Gratitude is the Greatest Healer and the Highest Prayer

L on Spring Break at Adventure City. Just look at that smiley face!

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."

~ Melody Beattie ~

A few nights ago at work, I had a colleague moan and complain about the things and people that bug her at work.  I listened intently to what she was saying and asked myself whether they bugged me, too and the answer was a definite yes!  However, unlike her, I usually no longer attach such strong negative emotions to frustrating situations (there are always excepts, of course). Growing older and having had both good and bad life experiences in my personal and professional life, I have succumbed to the approach of "roll with the punches" in dealing with sticky situations.  Being younger and less experienced in life, slights and frustrations can get warped out of proportion and hopefully, she doesn't end up being a chronic complainer and whiner.  Lord knows I've come across so many in their later lives who leave behind in their wake the fragrance of bitterness, anger and hatred for everyone and everything. And, it's not a pretty sight.

Ironic as it may sound, even with the added frustrations and heartbreak that goes with raising a SN child, I have chosen to recognize the things that make me grateful and have realized that there are so many things to be grateful for, things I have not even paid attention to in the past.  One would think that I would be wallowing in sadness, anger and frustration as a SN parent (and I do, some times) but on the contrary, I have come to notice the extraordinary grace God has bestowed upon my life.  I am grateful that Luki is ALIVE(!) he is with me and I get to kiss his little lips every day! What a privilege and no one can take that experience away from me, it is already imprinted in my soul. He knows only one command and that is "Kiss Kiss".  He comes right over puckering up his lips for me to kiss and sometimes he even sticks his tongue out as if he needs his tonsils inspected, ha! I love our ritual at night of bathing and getting a bed time story and I just generally love how awfully cute he is!  I am grateful for all our health and the fact that we are gainfully employed; at what a wonderful husband and father Gabriel is (I got lucky!); all the education I received and the learning I continue to have, the travels I had in the past, work that fulfills my promise to God.  I am so grateful for this time, this precious present time, the here and now with L where there are no worries and concerns. Each second distilled in itself without fear of the future and regrets of the past is precious and sublime.  Somehow, I feel so safe being with L and I can gaze into his little sleeping face for hours without getting tired. 

If you choose to linger around the positive more than the negative, how can you not be happy and grateful?  As Melodie Beattie's quote above suggests, gratitude can be a great healer. 

Iyanla Vazant said there are only three prayers she offers God.  One is "Help!" Another is "Help me NOW" and the third is "thank you".  The highest prayer we can offer God is a simple "thank you".  

Adventure City selfie: Up UP and Away!

This year's picture with the Easter bunny.

He drove me to Adventure City and we are still alive. 

Spring Break: A day at LE Funland

Tumbling in the spinning thingy

Tasting the balls. Le Funland

Easter Brunch at the Almansor 

In his Easter outfit with is Easter artwork in the background. 

Admiring his own artwork.

Happy brunching at the Almansor.

2016: Spring, Sentient Plants and Caroline's Cart

Spring has finally arrived!  Although it was the year of the El Nino, and mother nature blessed California with much needed rain to end the drought, it was not as cold as I had hoped it to be.  I feel winters were much colder about 20 years ago when I was growing up.  But, nonetheless, I love Spring with its warmer weather and beautiful flowers.  Yesterday, I saw a pink and white bougainvillea for the first time and thought it was the most beautiful bougainvillea I have ever seen!  It almost seemed to glow in the sunlight and I had to get a clipping of it!  It reminds me of my favorite flower, sweet peas (without the fragrance) which I have in my planter right now and am looking forward to seeing its blooms in a couple of months!  Gardening has helped me relax and somehow feel loved.  I have been able to grow almost anything and have found joy in rehabilitating dying plants I buy for sale.  It sounds odd but I feel they really respond to my thoughts. It is calming, meditative and spiritual. One time, I had hoped the roses in the planter would grow a certain way but did not prune it at all.  Next thing I know, it is growing exactly as I wished.  I remember a similar thing happen with a squash the neighbors had planted in my previous apartment.  I wished it would climb the wall and grow a few squash on our patio and in a few weeks, there was one vine that kept growing and growing until it finally started growing a squash right on our back patio table!  It was amazing and I have had a fascination with caring for plants ever since! 

Mr. L is finally over is flu and is his happy leprechaun self (although, in this picture you wouldn't know it).  Here he is twurling his favorite toy framed by his school artwork.  As the saying goes, "Keep Calm and Leprechaun"!  I love discovering all the artwork he brings home from school and I proudly have them displayed in the living room.  I get excited to open his backpack every Friday to see what he has made.  It's like I am receiving a present every week!

Today is the first day of Spring Break and L and I were just hanging out doing some shopping.  We were so happy to find the Caroline's Cart for special needs children at our local Target Store!  There is only one on the floor currently but the manager said they are in plans to get more in.  It was so easy to just strap him in the seat instead of trying to fit him into the basket of the conventional carts which he is fast outgrowing.  He also wiggles himself out the the seat belt and stands on the top of the cart and many store clerks has warned me that he needs to sit down.  Unfortunately, I rarely shop at Target.  I have written a letter to Ralphs, Trader Joe's, Whole Foods and Vons stores via their comment section online and requested they get them in their stores, too.

I think he really liked the cart because a few minutes later, I found him fast asleep!  I spent an hour at Target just waiting for him to wake up.  

Last Saturday, Gabe attended an all day symposium at Whittier Law School in Costa Mesa about the care and legal aspects of raising a special needs child.  Lawyers, social workers, therapists, law students receive continuing education credit for attending and so are charged a few hundred dollars but they make it available for free to the parents, with lunch included to boot.  Gabe said he learned a lot about conservatorship and setting up special needs trusts.  They even reviewed details about what forms to file with the courts and even how many copies to make!  Most law schools have "special needs clinics" where law students under the auspices of an attorney help parents with IEP meetings, guardianship and other legal matters all for FREE!  It is definitely an underutilized resource for many parents who may not be able to afford costly attorneys' fees.  Here is the agenda for the symposium and the topics they covered:

Someone video recorded all the sessions.  Here are links to the syposium:

below are the links to videos of all of the panels from our recent symposium, "The Special Needs Child From A to Z: Assessment to Zealous Advocacy."  The videos are password protected; the password (for all) is: special1

password for all : special1
panel 1: Assessment: https://vimeo.com/160284755 
panel 2: Advocacy: https://vimeo.com/159645906 
keynote: https://vimeo.com/159645905
panel 3: Guardianships/Adoptions: https://vimeo.com/160291069
panel 4: Financial Planning: https://vimeo.com/160369239

Can political Correctness Change People's Attitudes When It Comes to Intellectual Disability?

"It's your heart, not the dictionary that gives meaning to your words." - Eugene Peterson

There is a campaign to end the use of the R word when it is at the expense of people with intellectual disabilities.  Some argue that using words such as lame, retarded, dumb, idiot used in context of comparing a not-so-smart action to that of intellectually challenged individuals is another attempt by politically correct people to sanitize the English lexicon to exclude any and all forms of offensive language against vulnerable groups. I personally don't care for people using that word in any context. When the geneticist was giving us L's diagnosis, she purposely omitted the words "mentally retarded" written on the diagnosis form. These words are so pervasive in our culture and when I reflect back on all the comedies I've seen, it seems like a laugh at the expense of  intellectually delayed people.  Forest Gump, Dumb and Dumber come to mind right away.  But, I enjoyed both movies immensely. People always seem to get a laugh at someone who is not the brightest and doing things that are not the best and smartest choices.  Why is that? Perhaps, it shines a light on our own imperfection and we let out a "shadow laugh", as the late Debbie Ford would say.   Do they feel such a condition is so removed from their own identity that they feel somehow superior?  Life is so fragile and in one split second, with one car accident or a traumatic fall, they or their loved ones, too, could meet a similar fate.

Here is another controversial scene that gave us the meme, 'You never go full retard".

I remember a doctor on the hospital unit where I used to work (before L came along) get frustrated with someone and he would say,  Well, they are special... special needs more like it"  At the time, I never really thought much of what he said or took offense, although I thought to myself that as a doctor, he should be more compassionate and not putting anyone down.  But, it was just a passing thought and I didn't ruminate over it for hours on end at home. On a TV show, I heard a man describe his mother as being "special" then he reiterated that she isn't special special, just special. What the heck?!  Last week, I was showing a new nurse on the floor how to program the timer on the vitals machine.  She was having a bit of trouble getting the steps and she proceeded to say,  "Oh, sorry... I'm Re----" Her words trailed off and she said instead."I'm special". Had I not a child with special needs, I would never have been bothered by her words.  Who knows? Maybe I would have used such words myself!  But, this time, I felt my body just freeze as if all the blood just left my body.  And, I didn't know how to respond. Are put downs said so unconsciously just a part of the acceptable lexicon of everyday conversation? It was probably a teachable moment but we were in a patient's room in the middle of the night trying to stay afloat with all our tasks. I  am sure she has no idea L has a condition.   Does replacing the word "retarded" with "special "somehow change her attitude and belief about the intrinsic value and worth of intellectually disabled people? Does it make it more acceptable to say?? Physicians initially came up with "mental retardation" not as a put down or insult.  It was objective terminology used to describe a condition.  It is people who have twisted the words to become degrading.  It is not the words that need to change, but it is people's hearts because without their hearts becoming more compassionate, any word used, be it retarded or special, will sound offensive.

It is said that the disabled community is the most discriminated out of all minority groups. And yet, the US is the envy of the world in how it treats the disabled.  Things like handicap ramps and handicap accessible bathrooms are nowhere to be found in most parts of the world.  I remember while I was living in Korea for two years, I had asked a university student what she admires most about the US and she replied that she mostly admires how it treats handicapped people and that the collective attitudes towards disabled people is so much more compassionate and accepting than it is in Korea. Things may not be perfect but I think Americans do have a tolerance and acceptance that is not matched in most parts of the world (except the Netherlands, I hear it is the best place to live if one has a disability).  I think that due to living in a pleuralistic society with such diverse groups, people have to be  accepting of differences; otherwise, it would become so violent and unbearable!  Our collective consciousness is still evolving and growing for the better and without awareness and exposure to neurodiverse populations, most people would be clueless - which is why people like L are such important members of society.  L is here to teach and help people recognize and experience their own compassionate heart. And, what a gift that is to the world!

Here is an interesting blog about the same topic http://www.twothirdsoftheplanet.com/politically-correct-disability-words-whats-right-star-trek-gifs/