"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