Disney Wonder Cruise 2019

What I Mean When I Say My Special Needs Son is a Blessing.

That's my best pirate face!

On this Thanksgiving day, I ponder on how many parents of special needs children believe what a blessing their child is in their lives.  How can they say their child is a blessing with so many sacrifices and challenges that comes with a severe disability that requires total care like my son?  Luki is 8 and still incontinent of stool and urine.   He is nonverbal and we have not had much success with using a communication device.  The only two commands he has mastered are "kiss" and "high 5".  He will occasionally give me an icon in exchange for a wanted item like a toy or snack and we work on this diligently through ABA therapy.  His ability to communicate with the world is so very limited. Yet, he is such a sweet and happy boy who gives me very little grief and I wonder in amazement how content he can be in such a state. I hope as he gets older, the realization of his difference does not lead him to despair.  I used to think raising him as a toddler was a challenge and I feared I was not cut out for the job but in hindsight, I realize he was (and is) an angel when compared to his three year old baby brother, Tae.  While Tae is a very sweet little boy, his energy and demand for attention and stimulation can be overwhelming at times.  Like all three year old boys, he has so much energy while Luki is slow in every movement.  Comparing the two boys is like comparing a tortoise and a hare. Tae likes to bite, pull my hair, pinch  and body slam me when I am lying down. I’ve never had to discipline Luki but tonight was the first time at my go at disciplining Tae. I don’t like this part of parenting but I'm not his friend, I’m his mother so it’s very important.  Before Thanksgiving dinner, Tae head butted me and I am left with a swollen eye and forehead.  It was by accident, but such things never happened with Luki.

Getting back on topic:   I've had to make career sacrifices to be Luki's primary caregiver, had to forego higher paying positions, the opportunity to work full time hours and move from graveyard to day shift.  I've had to deal with insurance companies, rude customer service personnel on the phone for medical equipment and on and on,,, don't mean to be a bore with all that headache.  So, I am not sure what other parents mean when they say their child is a special "blessing" in their lives but for me it is a gain of a spiritual nature.  We are all here as spiritual beings having a human experience.  But, sometimes, the lure of the material world can take over our priorities and we can lose sight of our true purpose for being in this world.  I can't speak for everyone else's life purpose but referencing the great spiritual traditions of the world, I suspect it includes being more loving, patient, kind, caring and compassionate . We are all here to learn how to give and receive love because the exchange currency in God's economy is love.  Luki reminds me on a daily basis that the things of this world is illusory and transitory but our soul is eternal.  He reminds and helps me to work on beautifying my soul more than the flesh because he is a beautiful soul in such an imperfect physical body.  And, that is OK.  Through him, my heart has become genuinely more sensitive to the suffering of the world which can feel very uncomfortable at times as things hit me harder than before.  On Thanksgiving morning I asked Gabe what he is thankful for with Luki and we both agree that we are grateful he has been seizure free for over two years, seems happy and we love the sound of his giggles, eats well and poops well (typical parents would not understand what a blessing the latter two are!) Our list is so drastically different for our typical three year old which include him  starting to talk in sentences, eating on his own, making progress with potty training, doing well at daycare and wanting to help with the care of his older brother by attempting to feed and clean him (the last one make my heart melt more than words can say).  I am grateful Luki is teaching Tae to be a loving and caring brother.

With Lucas by my side, it is easier to obey the First Commandment of putting God before all other things because I need to lean on his grace everyday on this unique journey.  And for that I am truly grateful to him.  I believe that before we are born, we all have free will to choose our parents, community, race and even disability we want in our earthly lifetime and some of us choose pretty challenging assignments.  What if Luki chose his disability to help me on my own spiritual journey?  If that be true, I could never repay him for the challenge he has taken on for my sake. I would be eternally indebted to him for his sacrifice. 

To the Mother Offended by People Who Disrepect Her Special Needs Child.

I came across a social media post by a mother of an intellectually disabled child asking for advice on how she can change people's negative and offensive attitudes towards her son.  Someone had said something akin to calling him a "retard" and she wanted advice on how to handle the situation and educate the offender.  Many parents chimed in on the comments section suggesting that she speak up for her child, educate the offender and be an advocate for her son and really let them have it. Some even suggested that she curse the jerk out and that if they were in her shoes, heads would be rolling.  Do any of these advises really encourage people to change their minds and feel remorse for their attitudes?  I don't think many people develop contrite hearts by being chastised.  Just like children who roll their eyes at being reprimanded by their teachers or parents, the attempt to educate can backfire and the parent can end up being ridiculed, too.   I have decided not to react to slights made against people with disabilities except when safety is at risk.  The anger and hurt would  just be wasted energy leaving me drained and negative.  My only recourse for them to become more compassionate is for me to model the behavior I want to see in others by the love and care I show my son.  If they see how well my son is taken care and loved even when he laughs inappropriately or makes strange sounds, my hope is they will come to see him in a more loving light themselves.   Truth be told, loving someone who can't speak, has emotional meltdowns,  requires constant care and safety measures, is prone to seizures, drools, can't control their bowel movements and can never give anything tangible back is not an easy thing to do. So, if my love for my son doesn't sway their hearts, nothing will. I can't make people think and feel what I want.  I can't make people change their minds.  I'm not sure if that is even my (or anybody's) job.  People change only when they are internally compelled by something that touches them in a profound way. The other effective way to change people's views is by drastic draconian measures that leaves no room for independent thought or freedom.  Who wants to live in a society like that? Not me.


That would be my advice, take it or leave it.

I wondered at times why God found it necessary to bring forth totally dependent and disabled souls into the world.  I remember a vision I had of a sea of souls in heaven waiting to come to Earth and expecting their assignments for the duration of their lives.  Some were granted wishes to be brilliant scientists, talented actors, gifted politicians.  When God requested souls to come forth for the assignment of being totally dependent on the care and compassion of others for their survival so that people on Earth can come to experience their own compassionate selves, many turned their faces and hid from God.  They cried out, "That is too hard an assignment! I'd rather be loved, rich, beautiful and admired! I want to be an architect! A movie star! A doctor! A scientist! Anything but that!" But, a few very rare and special souls stood up and said yes to God.  They found the challenge very important in God's scheme of the Universe and they understood its importance more deeply than others. How completely they must have perfected the art of detachment from the ego to take up such a challenge!  Can you imagine how God msut have felt for these souls at that moment? And, the parents must have also signed up for this experience, too even if that sounds completely absurd.  We are all here to awaken and enlighten each other to our own great selves.  Everyone and everything can be used for good.

************************************

“We can reject everything else: religion, ideology, all received wisdom. But we cannot escape the necessity of love and compassion. This, then, is my true religion, my simple faith. In this sense, there is no need for temple or church, for mosque or synagogue, no need for complicated philosophy, doctrine or dogma. Our own heart, our own mind, is the temple.

The doctrine is compassion. Love for others and respect for their rights and dignity, no matter who or what they are: ultimately these are all we need. So long as we practice these in our daily lives, then no matter if we are learned or unlearned, whether we believe in Buddha or God, or follow some other religion or none at all, as long as we have compassion for others and conduct ourselves with restraint out of a sense of responsibility, there is no doubt we will be happy.”

~ The Dalai Lama ~

"How Can I Help?"

Quite often I see posts on social media that asks families with special needs children how they can help ease the load. I have not had any offers so far.  Of course, there are many things people can do to help out a struggling family with limited time and energy to adequately meet the demands of a 24 hour care-giving job.  Meals can be prepared, offers to do chores can be made, providing respite to the parents by offering to babysit for a day? Maybe two?  Financial assistance.  So many ways to help out, aren't there?

I once asked my mom how I can help her out since she lives alone and she told me that the best way to help her out is to do good for myself.  To live responsibly.  Be fiscally responsible.  Be happy in my marriage.  Be a loving mother to my boys.  Be a good citizen for my community.  This made me think about how others can best help us, not just temporarily with offers of services, but in a lasting way which really perhaps maybe the reason why my son incarnated with a rare syndrome.  The best way, as similar to my mother's request, is for others to live a good life.  Be responsible.  Be a kind, caring, sensitive and compassionate person.  Don' mock or be judgmental of those that are different or less fortunate or are spiritually/mentally lost. Be mindful with your words.   Love your families.  Love yourselves.  Do good in your communities.  Seek to know God. Strive to make this world a better place - I know that's a broad statement but you get the sentiment.  If everyone on this Earth did this for my family, how enriched our lives would be.

Having said all that though, I won't refuse offers for respite care and household chores.

A Course in Unexpected Blessings

I've joined a study group online for the book Unexpected Blessings,  the Joys and Possibilities in a Special-Needs Family hosted by the author Sandra Peoples ( link to book ).  It is a Bible centered  book that gives a Christian perspective on the topic of disability, and raising special needs children.  A group of special needs parents enrolled in a group on Facebook dissect the book and share experiences on their journeys with their children.  The author has 4 other Christian, special-needs authors as guests, some of whose books I’ve already read.

The first author to be interviewed was Becky Davidson, mom to a teenage boy with autism, president of Rising Above Ministries, co-author of Common Man, Extraordinary Call and a widow.  Becky shared how at one point in her journey she spoke about her mistrust of God after her husband's death.  She was a faithful christian and was a leader of ministries that helped people like herself, living with a disabled child and yet, God took away her husband and left her a widow.  This made me think about what happens when we pray and pray for healing, restoration , good things in our lives and they don't happen?  Where do we stand with God when God doesn't answer our prayers?  Why pray for things at all?

There is a saying, "Hope for the best, expect the worst and you won't be disappointed.”  At some point, I realize our faith has to mature beyond just asking God to give us things that make life easier and better.  It's like children ask for things from their parents because the adults hold the purse strings and are responsible for the care and well being of their children.  But, as children grow, they take responsibility  for their own lives and are able to do things for themselves.  Likewise, our faith starts off by asking God for things to be taken care of but as our faith matures, so must our demands.  We become co-creators with God and have to be willing to accept things that happen in our lives with grace.  Didn't Jesus say, "In life, you will have troubles, but I am with you always".  I don't expect all my problems to go away or be shielded from life's troubles because I found faith.  But, I do expect to have angels, Jesus, God and the heavenly realms to be with me, by my side, in my earthly trials giving me strength, encouragement and support as I walk through the dark valleys. And, there have been many trials in life and having a special needs child is not one of the worst of them.  Just because I found God doesn't mean all my troubles disappear.  There is a Zen Buddhist saying, "Before enlightenment, chop wood, fetch water.  After enlightenment, chop wood, fetch water."

There is a blogger by the name of  Kurt Koontz who shared his experience as a traveler in India and encountered a yogi who said he doesn't worry about the outcome of any situation.He said, "Life is so chaotic and most things are out of our control"  So, through his particular faith he has come to learn to just unconditionally accept what happens as it happens and  to release the ego's desire for wanting things to happen as it wants.    That's a very big thing to achieve mentally and I'm not sure I am a master at that, yet.  But, it's something worth striving for at least for my mental health.

What I have found in faith is a peace from anxiety, a knowing I'm not walking alone but have a spiritual team by my side, both in heaven and on earth, giving me healing, good counsel and encouragement.  That is all I've come to expect from my faith and I am satisfied with it.  I still have worries and fears about the future occasionally but when I do, I know I can go to prayer for comfort and it really does help settle me.  This life is just a short and strange blip in time before we all go to our real home in the afterlife.  Hopefully, it's much nicer and pleasant than this Earth classroom.   Maybe the Soviet communists were right when they said "Religion is the opiate of the masses", and what's wrong with that?  If it helps ease pain, relieve anxiety, gives hope and a sense of belonging and love, I don't see anything wrong with it.

"Invisible Mother"

🔸Invisible Mother 🔸

It all began to make sense, the blank stares, the lack of response, the way
one of the kids will walk into the room while I'm on the phone and ask to be
taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'

Obviously not; no one can see if I'm on the phone, or cooking, or sweeping
the floor, or even standing on my head in the corner, because no one can see
me at all. I'm invisible. The invisible Mom. Some days I am only a pair of
hands, nothing more! Can you fix this? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock
to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is
the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?,
What's for dinner?'

I was certain that these were the hands that once held books and the eyes
that studied history, music and literature -but now, they had disappeared
into the peanut butter, never to be seen again. She's going, she's
going, she's gone!

One night, a group of us were having dinner, celebrating the return of a
friend from England . She had just gotten back from a fabulous trip, and she
was going on and on about the hotel she stayed in. I was sitting there,
looking around at the others all put together so well. It was hard not to
compare and feel sorry for myself. I was feeling pretty pathetic, when she
turned to me with a beautifully wrapped package, and said, 'I brought you
this.' It was a book on the great cathedrals of Europe . I wasn't exactly
sure why she'd given it to me until I read her inscription: 'With admiration
for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover
what would become for me, four life-changing truths, after which I could
pattern my work:

1) No one can say who built the great cathedrals - we have no record
of their names.

2) These builders gave their whole lives for a work they would never
see finished.

3) They made great sacrifices and expected no credit.

4) The passion of their building was fuelled by their faith that the
eyes of God saw everything.

A story of legend in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a tiny bird
on the inside of a beam. He was puzzled and asked the man,
'Why are you spending so much time carving that bird into a beam that
will be covered by
the roof. No one will ever see it'

And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost
as if I heard God whispering to me, 'I see you. I see the sacrifices you
make every day, even when no one around you does.

No act of kindness you've done, no sequin you've sewn on, no cupcake you've
baked, no Cub Scout meeting, no last minute errand is too small for me to
notice and smile over. You are building a great cathedral, but you can't see
right now what it will become.

I keep the right perspective when I see myself as a great builder. As one of
the people who show up at a job that they will never see finished, to work
on something that their name will never be on. The writer of the book went
so far as to say that no cathedrals could ever be built in our lifetime
because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for 3
hours and presses all the linens for the table.' That would mean I'd built a
monument to myself. I just want him to want to come home. And then, if there
is anything more to say to his friend, he'd say, 'You're gonna love it
there...'

As mothers, we are building great cathedrals. We cannot be seen if we're
doing it right. And one day, it is very possible that the world will marvel,
not only at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible mothers.

💖
➖Original author: Nicole Johnson

AbilityFirst

Lucas  had the best summer at Ability First going on field trips, making friends, swimming, water balloon fights, dancing and more!  Every day, at least 4 or 5 kids greeted him with a loud and enthusiastic "Hi, Lucas!!!"  This brought tears to my eyes.  Words can't describe how grateful my heart is to all the staff and counselors at Ability First.  Looking forward to going back again next summer!

"Autism and the #blessed life" by Diane D. Kim

"Autism and the #blessed life"

Autism and the #BLESSED Life

Diane Dokko Kim

Autism. Diagnosis code 299.00

Our toddler could barely walk when his future ran out on him. The slippery slope from diagnosis to the dissolution of dreams is steep and cruel. Regardless how rare a child’s condition, the heart of every special-needs parent tumbles into a universal pit of despair,

“He may never speak. He won’t have friends.”
“He can’t go to college, He won’t have a job.”
“He can’t get married. He won’t have a family.”

Ironically, we live in Silicon Valley, where start-up pluck, uber-excellence and virtuosity are de rigueur. It’s standard fare that parents are desperate to get kids into top-notch colleges like Stanford, a high-paying job in tech, a sparkling new Tesla, and season tickets to the Warriors, where they can post selfies tagged #BLESSED

What about us? What will our child’s life amount to if he can’t talk, connect, compete or contribute, like everyone else? Is there any other way to a blessed life?

The Way, Truth and Life

Many years ago, lived a young woman whose motherhood didn’t pan out how she expected, either. Engaged to a respectable carpenter, she looked forward to a quiet life of domestic bliss—and a lifetime supply of good furniture— until an angel of the Lord appeared to hijack her plans. “Highly favored” by God, she found herself the equivalent of a teenage unwed mom.

And her child? He was birthed amidst animal filth and grew up in a remote, obscure town. Not particularly handsome and frequently misunderstood, he often referred to “a kingdom not of this world’ and “food you know nothing of.” His temperament suggested an otherworldly nature; perhaps his own family and neighbors thought him peculiar.

He never married or raised a family. His closest friends ditched him when it got too uncomfortable to be associated with him. He never went to college or owned a home. His career only lasted three years, until he was falsely accused and died the ignoble, gruesome death of a shamed criminal.

This was God’s beloved Son, with whom He was well pleased. And his mother, “The most blessed of women”? A sword would pierce her soul, too.

Clearly, God defines favor and blessings far differently than I would.

Kingdom Currency, Disabled, Not Discounted

In every metric of adult achievement, Jesus “failed.” At his baptism, the heavens opened to herald His arrival—the closest He ever came to a graduation ceremony–yet our world esteemed Him not.

He had no servants, yet He was deferred to as Master; No degree, yet He was called Teacher; No armies, yet He conquered the world. No one else overturned death and ascended to heaven to sit at the right hand of God. No one else has been a Savior.

If the greatest commandment is to “‘Love the Lord your God with all your heart and with all your soul and with all your mind,” then Jesus set the gold standard for incomparable success: Eternal glory despite a glaring deficiency of earthly credentials.

Our children, too, can love the Lord with all their heart, soul, and mind. They can know God and be known by Him. Children are valuable because they are loved. They need not establish utilitarian value to prove their worth. We cherish them for no other reason than because they are ours: a devotion that reflects God’s unconditional love, for while we were yet sinners, Christ died for us.

Spiritual IEP

What will our child’s life amount to? Our children may be disabled, but not discounted. Every child—regardless of output or ability—is equally priceless and purposed by God. He blesses them and will make them a blessing.

Mary couldn’t have conceived. Yet she did. I couldn’t have conceived being blessed by autism. Yet I was. Fifteen years ago, when a doctor’s note leveled our lives, I couldn’t have imagined how disability could ever be a blessing. But the power of God is made perfect in weakness.

I couldn’t have imagined the gifted professionals we’d meet on the journey: Therapists, educators and specialists whose passion paralleled our own; or the tribe of fellow special-needs families who “get it.” We offer each other the priceless gift of belonging to a Shared Otherness.

I couldn’t have imagined how our child would challenge and inspire others into greatness, beginning with our own family. Our Individualized (Spiritual) Education Plan has optimized how passionately we love, how bitterly we cry, how desperately we pray, how fiercely we fight, how hard we hustle, and how endlessly we hope.

Through striving to maximize our child’s potential, our children maximize ours. They school us for wizard parenting in a Muggles world. We may not have gotten the child we expected. But they refashion us into warriors and witnesses we didn’t know we could be.

Extraordinary blessings cannot be gained in ordinary ways. Our world may rank #blessings by report cards and appraisals, price tags and pay grades. But God uses the simple things of the world to shame the wise, and the weak to shame the strong. When the God of the universe esteems all His children as “wonderfully and fearfully made”—regardless of abilities, achievements, status or #BLESSING—I’m learning not to argue with Him.

So from now on we regard no one from a worldly point of view. Though we once regarded Christ in this way, we do so no longer.

Diane is a special needs ministry consultant, speaker, and author of, Unbroken Faith: Spiritual Recovery for the Special-Needs Parent. Connect with her at dianedokkokim.com. This adapted excerpt was taken from Unbroken Faith © 2017 by Diane Dokko Kim. Used with permission by Worthy Books, an imprint of Worthy Publishing Group, a division of Worthy Media Inc. All rights reserve

Our Current Essentials of Living with Dup15q, Part II

Mr. Sophisticated Luki at LegoLand

It's been a few years since I made a list of products we use for Lucas.  He has grown quite a bit since then and some things we've chucked, others we kept and new items have been added to our list.  Gabriel said when he had a Mercedes it was a much cherished high performing luxury car but it was also high maintenance and sat in the shop a lot.  Lucas is my Mercedes! I have to fine tune stuff for him every so often.

So here is my list:


1. chewy necklace : He likes these basketball ones the best.. The only problem with these is that we go through them so fast as his bite is pretty strong.  The necklace comes off the basketball.  I wish they would put a small metal ring around the hole so that it lasts longer. I wrote to the company to do so but they said they won't because it is a choking hazard

Lucas still likes to chew on his finger when he gets frustrated and it can get quite red and swollen.   We have a finger guard for when his chewing is severe and we always keep a chew necklace. When the chewing gets really severe, I have to place a finger guard to stop the swelling and give his poor finger a break.
2. tomato glasses frames
Love, love love these glasses on him.  Fits so well and he looks so handsome.
3.  seat liner
A must now for when dining out.  He has outgrown the Chinese car seat covers.  Found out about these through our MediCal representative and they even paid for it.
4. High tops
He is getting better with keeping his shoes on most of the time and I can send him in sandals during the summer.  The school hasn't complained about him taking them off , knock on wood.  When we go to indoor kid's play gyms which require socks, he will take them off so I tape the socks with sports tape.

5.AngelSense / Jiobit
Although the schools do a great job of keeping him safe and I trust the bus drivers, I keep a tracking device on him whenever he is away from home.  I used to subscribe to AngelSense but it was getting very costly so we switched to Jiobit whose subscription price is only $8.99 per month verses $30.00 for Angelsense.  The difference between the two beside the pricing is that Jiobit doesn't have the feature where we can listen in or speak to Lucas in emergency situations.  That's ok because Lucas isn't able to take directions anyway. Also, the battery life on the Jiobit lasts longer - a week versus one day.
6. Recorder spy recorder
I do use it once in a while when I am feeling extra anxious about his care and safety at school .  What with so many stories of abuse of special needs children by school staff, I need this to preserve my sanity. - whatever is left of it.  So far, I've found everyone to be very gentle and caring with him.
7.   Safegard car seat.  We don’t have a need to use this yet because the Britax Highpoint is doing a great job but will consider it when he outgrows his booster seat.  He has been so mellow in the car that we may only need the car safety belt.  This will only work in the minivan or in the front seat.  One day, when Luki is big enough, he may be able to sit up front and I know he will love that!  When the time comes, I will use the safeguard harness for the shotgun seat.  This is also what is used for him on the school bus.
8.  Britax Highpoint. We have one in each car. I love the strap between the legs because without it, he will squirm down and wiggle his way out of the seat.
9.    Convaid cruiser/  MacLaren Stroller.  We only use the MacLaren right now because it is so much lighter and portable than the Convaid.  As he outgrows the MacLaren, we may need to use the Convaid unless I can find a lightweight wheelchair.  I saw a cheap wheelchair on Walmart’s website.
10. Tandem stroller Graco Sit Stand : This was very useful when Liam was an infant but now Liam refuses to sit in the front and would rather stand with Lucas in the back so we no longer use this stroller and have moved on to the Lascal Buggyboard attachment on our MacLaren special needs stroller. We first used it when we went on a family trip to Sequoia National Park and Liam loved standing/sitting on the back and the freedom to get off and walk to explore when he wanted.  Lucas loved the security of sitting down looking cool with his legs crossed like an adult (see picture above).
Luki will walk next to me at grocery stores.  I usually hold his hand when we go for walks in the neighborhood but at places like the grocery store, I have him attached to me with Blisstime Anti Lost Wrist Link Safety Wrist Link .  I can have it attached to the shopping cart when my hands are too busy getting groceries in the cart.  He is pretty good about standing near the cart but on occasion, will walk away towards what fancies him in the store.   This wrist link reminds him to not wander away.
11. Lascal buggyboard Maxi with seat.  Lucas sits and Liam (2 years old) sits or stands in the back.
12. Foot rest for car seat  knee guard foot rest : Lasted for a while but was destroyed when Lucas tried doing all kinds of acrobatics on it.
13.  EZ mat Still comes in handy during mealtimes.  I am learning to stop spoon feeding him and let him eat on his own even with a big mess.  He still can’t independently use a spoon but will use his fingers to eat anything.  He is getting better at pacing himself, too.
14.  seizure helmet.  We are one year seizure free!!!! He has not worn his helmet for 12 months now. Praise God! Thank you, Jesus! Hail,Mary!  Hallelujah! Amen!!!
15 Banzel and Lamotrigene:  Our wonder drug combo for seizure control.
16.  multivitamin: we just get a supply of gummy kids vitamin at Costco. We are also still giving him high doses of this brand of DHA. We put CBD oil on hold for now.
17 Hydroxyapettite toothpaste from Japan Apagard Toothpaste:  Lucas does not spit toothpaste foam out and would rather just swallow it.  I use the bubble- gum tasting toothpaste, maybe I should switch to something that tastes more like Listerine so that he spits it out.  But, then again, he may not allow me to brush his teeth.  He loves getting his teeth brushed (thank God, again!) and also loves to watch other people brush their teeth, too.  Not sure what the fascination is about but I always have an audience when I brush my teeth. I may need to use it as a positive reinforcement reward during ABA!  “Lucas, if you put the puzzle in, I will let you watch me brush my teeth!” I never dreamed I would have a captive audience when I brush my teeth!.
18  ABA : Therapy at home 4 days a weeks. Not sure how much it is helping but I love that he gets more people interaction and attention even if it is just from his therapist. More on ABA progress on another blog entry.
19   Go Talk 4;  We have not had much success using this communication device.  I don't know if we ever will have much luck. I'm still hoping one day he will just start talking.
20  Nikki's xtra large cloth diapers At home, I try to use cloth diapers just because I want him to have some relief from itchy plastic diapers.
21. Swifty snap I use this to change Luki's diaper when I am at public places.  It allows me to change diapers with him standing up.  We also use it at home because Luki will not lay on his back for diaper changes.  I have to change him with him on his tummy.  We try to "potty train" him by telling him it's bathroom time and have him stand in the bathroom with me sitting on a stool.  When I don't have the swifty snap, I lean him against a wall to keep the diaper in place.
22. Umbrella cap When I first saw this product on social media, I thought it was a gag gift but it has worked amazingly well with Lucas on rainy days.  He doesn’t know how to hold an umbrella and even if he did, he wouldn’t use it because he loves falling water from the faucet, sprinklers , anywhere. Raincoats for some reason leaves him soaking wet.  This umbrella cap works so well.  It looks funny and I have had random people in cars take picture of him.  But who cares what they think. Hopefully, his picture isn't posted on social media and it goes viral.
23. DVD player/iPad with YouTube videos (Baby Genius is a favorite)/ ipad holder for the car:  I found a cheap one for $4.00 at Daiso.
24. Protein shakes  Orgain  is the brand we use because he eats well but is still so skinny that I worry he is not absorbing the nutrients from food (hypotonic muscles in the GI system too weak to facilitate peristaltic movement of food ?)
25. Adaptive clothing line at Target and Kohls.  Lucas does not mind labels on clothes but I like the pants these adaptive clothing lines offer.  They are roomier in the crotch area for kids still in diapers.
26:  This bead toy is his absolute favorite. He likes to flick the beads with his finger and carries it everywhere he goes. He also still loves Scout.
27. Sensory Scout Swing:   I bought this as a Christmas present for Luki last year.  It is said to be good for proprioception and kids on the spectrum like swinging but Luki never took much liking to it.  He is, however, able to swing on his own on a regular swing at the park if we don't push too high.  My two year old has stamped this as his own and loves swinging on it.

Ahn Summer Family Vacation at Santa Barbara 2019

Rosemary Altea on Why Advanced Souls Incarnate with Disabilities and Luki Pooki is Becoming Such a Handsome Young Boy.

Here is Rosemary Altea addressing one of my questions about why advanced souls incarnate with intellectual/physical disabilities.

Listen at 27:23 for question from JiJi

We are one year seizure free!!!!

Making progress with using a spoon.

Lucas is making progress with feeding therapy.  Some days, he will eat a whole meal with a spoon and other times, he won't take one bite.  The dentist recently stated that his back molars are coming in but his teeth are that of a six year old (he just turned 8).  The molars must be bothering him because he will put anything in his mouth.  I found him munching on dry leaves, grass, mulch and his index finger which is swollen and red from all the biting.  Last night, as I was bathing him, I pulled out a little red balloon out of his butt. At first, I worried it might be a hemorrhoid but Lucas always has good BM. I hope he didn't swallow the balloon when it was inflated. I've tried to avoid placing his finger guard on his index finger because it impeded dexterity but  I am being more diligent about putting it on now, at least temporarily until his molars are all out.  .

Lucas loves to play with this

He is getting to be such a handsome young boy

He can now swing on his own. 

Fridays are for swimming at Ability First 

The little red balloon I pulled out of his butt during bath time.

I love it when he gives me his tight hugs!

 Enjoying the trees at Sequoia with little brother

Feeling sick

I hate it when he is sick but love that he lets me cuddle him all day. 

Self Care for a Weary Special Needs Mom?

For 4th of July celebration this year, our family went to Sequoia National Forest to celebrate the beauty of the land.  We skipped all the fireworks but enjoyed quietly walking among the majestic 3000 year old sequoia trees with our mouths wide open in wonder and watched the beautiful starlit sky at midnight with a glass of wine - well, only me because it was lights out for the boys by 8pm.  We were lucky enough to get a cancellation room at the only lodge in the park called Wuksachi Lodge tucked away among the trees and visited by many deer and international tourists.  We stayed for 2 nights and left early so as to avoid the mass exodus of tourists who had the same idea to spend the holiday at Sequoia.  The park was packed to the brim with campers, hikers, and day visitors that at times it felt like a busy city instead of a remote mountain forest.

 When we returned home, I realized I had left my backpack with my toiletries, neck support for sleeping in the car, hat and some other personal things back at the lodge.  I hadn't realized at the time but not once did I open my bag to get personal stuff for myself while everyone else had their suitcases unpacked.  I was so busy taking care of everyone else's needs that even when my own needs were ignored, I didn't even realize it! So now, I am using Luki's spare Darth Vader backpack for the time being.

 I may need to go shopping soon.


Sometimes I worry that by the time Liam is an adult, I will have become an exhausted, dull, boring person with no hobbies, interests and I will have nothing interesting to talk about with anyone.  Things that used to interest me before like traveling and exploring new places just seem like a lot of work and a stressful job reluctantly pursued  so that the kids can be exposed to the world and traveling. Even Sequoia which was amazing was a lot of work. A job because I now have to pack for 3 as before, when I was single and carefree, I just packed a tote for myself.   Just watching travel photos of people on Facebook exhausts me because I am thinking of the logistics of navigating a new place, packing/unpacking, planning the itinerary, and enduring a plane ride with two kids not to mention check in, TSA, special needs stroller, a toddler who likes to vanish like Houdini, etc.. In my fantasy spare time, all I really want to do is lay around, zone out on Netflix and munch on junk food.  Other than that, I don't know what else to do with myself when alone in a quiet house while the kids are at school/daycare and Gabe is at work except do chores which never seem to end. The toilets could always use another scrub and a load of laundry is always waiting for me. What is even more concerning is what if I  get to the point of actually looking forward to scrubbing the toilet and doing the laundry. What if that becomes my only  joy in life?   I recently came across aa webinar on the Toll of Caregiver Trauma and I wonder if I, too, am somewhat "traumatized".  To be honest though, Luki is an angel and I had an easier time with him during the toddler years than with little Liam. Actually, they were hard in different ways: Lucas needed more physical support due to hypotonia and the bout of seizures and Liam needs me constantly to satiate his enormous curiosity. I can't seem to keep up with him. 

Liam wearing my laundered shirt

Liam says the laundry basket is a choo choo train and threw all the clean laundry out; My makeup brushes are all over the floor

These are the times I wish I had children in my twenties when I had more energy..but then again, I remember being pretty tired back then, too. 


Mothering is hard work - special needs or not! But the rewards are so so worth it! Right? Right.

Jean Vanier on Accepting Who We Are.

RIP Jean Vanier and thank you.

I am sharing a post from Parenting Kids with Disabilities blogspot from Wednesday, May 22, 2013.

Jean Vanier on accepting who we are

2:53 PM acceptance, Intellectual disabilities, social isolation, stigma 6 comments

Last summer I visited L’Arche (The Ark) in Trosly-Breuil, France—the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries. In a phone interview on Monday I asked Jean what he’s learned living with people with intellectual disabilities. I was struck by the beauty of how Jean speaks and listens.

BLOOM: Is intellectual disability the most stigmatized of disabilities?

Jean Vanier: I think it can be considered one of the most stigmatized because it touches something very profound. Many people define human beings because of their capacities and success and so on. Aristotle would define someone as a ‘reasonable’ person, a person who can think, a person who is capable of doing things. He would talk about the intellectual component. And of course people with intellectual disabilities are wounded in their intellectual component, but they have another component which is very much alive, which is their capacity to love.

Somewhere in their deepest personhood they are rejected. This is the story of people with intellectual disability over the whole of history. They were considered as a punishment from God. We see this even in the Gospel of John, when the disciples of Jesus see a man born blind, one asks: ‘Is it because of the sins of the parents or his sins?’ For someone to be born without seemingly a capacity to be fully human is seen as something horrible, and therefore these people are hidden away. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love.

To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others.

BLOOM: How has your thinking about life changed as a result of living with people with intellectual disabilities?

Jean Vanier: I think what I’ve discovered living with them is about the primacy of relationships. The important thing is to be in communion with people and from communion rises up joy and fiesta. We human beings are made to have fun, we’re made to be happy, we’re made to be people of joy and joy flows from communion and unity. Anguish and violence comes from all the forms of disunity.

So human beings are called to become one and to be together. People with disabilities call forth what is most beautiful in me and others, which is the capacity for tenderness, but they also call forth difficulties, to see my own difficulties in relating and call me to work on them.

BLOOM: I often feel that my son’s disabilities are shining a light on all of my weaknesses.

Jean Vanier: That I really understand—showing a light on our weaknesses, showing a light on what it means to be human. The danger in our society is to pretend that we’re strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: ‘I need your help.’ That brings us together, because I’m not able to do everything myself. I’m calling out: ‘Can you help me?’ Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted.

BLOOM: We live in a fix-it culture where no one is ever good enough as they are. I think for parents of children with intellectual disability, there’s a real conflict between accepting your child and trying to change your child so that your child will fit into the world better.

Jean Vanier: That is a tension even for us here in L’Arche. The great fear of parents is that they don’t want their child to be looked down upon and rejected, so they want them to be as capable as possible and accepted. All of us have to go through this tension between showing we are capable and accepting ourselves with our weaknesses.

BLOOM: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.

Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.

BLOOM: It’s often assumed that people with intellectual disability can’t have a good quality of life, particularly in the medical world.

Jean Vanier: I think richness of life comes from richness of relationship. If we view richness of life from the point of view of success—power, a beautiful marriage, two cars and a house, having two children—the reality of human beings is not that. You can have all the riches of the world and still be terribly upset because no one really loves you and accepts you in your fragility.

When I think of the richness of life I think of someone like Antonio, who was here with us. He had an incredibly beautiful face and eyes and smile. He couldn’t walk, he was as fragile as you could imagine, but he had a capacity to trust us and to enter into that relationship to be with him. He changed people’s hearts.

He brought us to the place of rejoicing that we are human beings together. So if the richness of life is viewed only from society’s view of success and power, then people with intellectual disabilities do not have that. But in reality, if we accept them as they are and if they accept us as we are, we can enter into this beautiful relationship which is a relationship of celebration.

There is a beautiful story of a young man in the Special Olympics who wanted to win the 100-metre race. He got into the finals and he wanted to be first. The guy running in the next lane tripped and fell and he stopped, picked him up, and they ran hand in hand, and finished last. He was accepting not to have the prize, but to live community and solidarity.

BLOOM: The neurodiversity movement has been looking at advantages of different types of brain wiring. Do you think there are positives that come from the way people with intellectual disability think and see the world?

Jean Vanier: I think we have to be careful. People with disabilities are so different from one another. What is absolutely certain is that their fundamental need is to be loved, and to enter into relationships.

The danger of many human beings is that we’re caught up in the idea of success, of power, of doing more and more and having more. We do have to help people with disabilities to progress—to be better in the world of communication, to be able to do things to become more autonomous. But what is the most important is this incredible capacity for friendship and love, and the way they can throw themselves into our arms and be as they are, simple and loving.

People like your son can be caught up in this fear of not being accepted by society, and at the same time being very sensitive to love. I’m sometimes touched by the suffering of people with disabilities who are caught up in the same dilemma or tension as many mothers: wanting to be better, wanting to do things and be acclaimed, but at the same time accepting to live in the moment of tenderness and love and celebration and dancing.

BLOOM: Do you think our culture will ever change to the point that people with disabilities are accepted?

Jean Vanier: I think there will always be a tension. I think something has to be done in schools. I think if one can teach right at the beginning of school, not just the need for success and to go up the ladder, but the need for being together. I was at a school in Calcutta where they were in a circle and the ones who were better were helping the ones who were doing less well. It’s to help children to discover the power of love. That togetherness is something incredibly beautiful.

The fear is that our schools are being run on the power system and children are not learning to be together in a place of happiness and love. This is the problem of deep individualism.

But of course parents are struggling with this. Parents of assistants at L’Arche are struggling with this. I was speaking at a school of one of our assistants and one of the parents said ‘What are your problems at L’Arche?’

I said one of the problems is that you’re very happy if your child comes to stay at L’Arche as an assistant for six months. But if your child wants to stay longer, you’re upset. Because you say ‘staying with people like that is degrading.’

There’s a whole change needed and let’s begin at the school level, to help children so that they no longer despise a child in the classroom who’s weaker, but they can see that it’s a benefit to everybody and it brings forth the beautiful qualities in children.

BLOOM: I was amazed when I visited L’Arche in Trosly-Breuil last summer to speak with an assistant who’d been living there for 36 years.

Jean Vanier: People discover a new way of being. They discover how their qualities of love have grown, and how they’ve grown, and how fundamentally they’re deeply happy here. We have fun together. It is good to be together and there are many people here, in this particular community, who have been here a very long time.

Amazingly, there are a number of young couples aged 28 to 40 who are asking to come to L’Arche as assistants because they have experienced all of the conflict and difficulties for a family in the ordinary life of society. These are young couples who are leaving society, where there’s all this tension to go up the ladder, all this stress, to live here in community and to raise their families here.

BLOOM: What advice would you give parents of children with disabilities?

Jean Vanier: My idea would not be to give too much advice but to be with them and to listen to them and to hear first their pain, and to gradually help them discover that their child has values that they have not yet seen in him.

I would encourage them to come to a L’Arche home and to see the fun and happiness that people have. But as I say, I’m wary of giving advice. I like to be with people and I really understand parents who in some ways feel crushed and hurt, because they were hoping so much for a child that would grow up and have children, and the parents would be grandparents. So, first of all, I would understand the pain of people. There is pain. But then to walk with them and help them and to discover that their child is really very beautiful. It can take some time for parents to come to that place of rejoicing.

BLOOM: Do you find that parents’ perceptions of their children change after they come to live at L’Arche?

Jean Vanier: When a child comes here there’s a joy and a pain. Pain because their child is no longer living with them, but a joy because they know that when they, the parents, die, their children will be well.

There’s always a tension with parents, and the more disabled the child is, the more the parents have grown to love him, to hold on to him, to nurse him, to care for him or her and then the idea of losing control over the child or losing that relationship is sometimes very painful.

But parents are there not to hold on to children, but to help them be well and to grow according to their own gifts.

BLOOM: As a parent I’m fearful when I hear of stories of abuse that takes place, not at L’Arche, but at other homes for adults with disabilities.

Jean Vanier: L’Arche began when I took two men out of an institution which I considered violent and not good and not really attentive to the needs of people. There is, let’s face it, the whole history of humanity has been a long history of abuse and violence towards people with disabilities.

People don’t want to have people with disabilities around because it reminds them of their own disabilities and capacity to die. There will always be a struggle and parents have to realize that and we have to work together, not just for people with disabilities, but for people with old age, with Alzheimer’s, with other illnesses.

And there’s a whole reality between those who are rich and those who are poor. I was in Chile some time ago and going from the airport to the city and my driver pointed and said: ‘On the left are all of the slum areas of Santiago. And on the right, all of the rich places, defended by police and military. And nobody crosses the road.’

This is a bigger challenge than just people with disabilities. We have to discover that to be a human society we have to be intensely present to those who are weak and in need. A society can only be human when the strong and weak come together to celebrate life.

BLOOM: It’s funny that we’re all mortal and yet so often we go through life pretending we’re invulnerable.

Jean Vanier: We praise the strong, we praise those who are winners, and we tend to despise the weak, or we feel despised if we are weak. The greatest pain for human beings is humiliation, to be despised and put down.

The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode.

Everybody is frightened of the word death. We’re taking that away and instead accepting that we are born to live and born to die, we are born to grow strong and born to grow weak. We are a harmony of strengths and weaknesses but it’s because of our weakness that we need help and we need relationships. The magic words are always: ‘I need your help. I need to be with people.’