Happy 9th Birthday, Luki! A Quarantine Birthday.

May 19, 2020, a quarantine birthday. We were supposed to be at Disneyland but we are still under quarantine due to Covid 19.  Luki turns 9!  We stayed home and had Indian takeout for dinner.  Luki bit into something really spicy and had a major meltdown but other than that, it was a nice birthday dinner. 

I always try and make an video every birthday to capture just how far he has come in his development and growth.  As he turns nine and physically more heavier and verbally more louder especially when he screams, I worry about the next phase of life and what is to come.  Will I be strong enough to handle him when he has meltdowns?  Will I be physically strong enough to carry him?  These questions rest in my heart as we approach the future.  

https://www.youtube.com/watch?v=IIOq-MUxRxA&feature=youtu.be

He liked his cake!

Poor Luki, his mouth was burning!

TaeTae was so supportve

after eating something too spicy, we had a big mess at the table

I ordered everything mild but then again, it is Indian food...

Bioavailability of CBD: Expensive CBD Oil Literally Flushed Down the Toilet!

Bioavailability of CBD oil based on route of administration

WTF!! The bioavailability of  cbd oil I've been giving L orally  is only 6-20%.  !  I've been literally flushing down expensive oil down the toilet all this time! I wonder if this is why CBD doesn't work for so many with seizures.  One has to consider the variability on absorption rates being different as people's gut health varies.

 The most bioavailable route seems to be vaping and even with that you only get at most above 50%! How do I vape for my 8 year old boy?  I wonder if a nebulizer is available similar to breathing treatments given by respiratory therapists to people suffering from respiratory illnesses....

Intranasal Bioavailability of CBD
Product Types	Bioavailability Rate
CBD vape oils CBD vape pens CBD vaporizers	34% to 46%, up to 56% Effects felt within 10 minutes

Sublingual Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD tinctures CBD sprays	13% to 19%, up to 35% Effects felt within 5 to 20 minutes

Oral Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD edibles, like chocolate or baked goods CBD concentrate added to water or food CBD capsules CBD gummies	6% to 20% Effects felt within 30 to 120 minutes

Topical Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD salves CBD creams and lotions CBD serum CBD lip balms CBD transdermal patches CBD suppositories	Low, although higher with transdermal or rectal Effects felt within minutes

47 Year Old Man with Prader Willi Syndrome and Venus Telepathically Reads Luki

A few nights ago, I took care of a 47 year old man with Prader-Willi Syndrome.  He mostly slept for me as I took care of him during night shift but in the morning I met his mother who shared many stories of what it was like raising a special needs son.  She told me that although many people love his gentle presence, he can be a bit hard to manage at home.  She stated that she is a recent widow and it has become harder to take care of him by herself.  She is tired and is having her own health issues to deal with.  His sister, who has her own family gets very short and impatient with him although his niece seems to know how to calm him down and take better care of him.  She shared that in her absence she worries about his care and placement and wonders if her daughter will take care of him as she has hoped.

Once she sent him to a summer camp for people with intellectual disabilities through AbilityFirst, a program I am interested in sending Luki at some point in time in the future.  When speaking to camp counselors, he stated that his mom hits him at home.  She adamantly denied this and I believe her because I saw how tenderly she took care of him at his bedside in the hospital.  This revelation prompted a whole child protective services investigation and he was whisked off to foster care  late at night when social workers whisked him away in an unmarked car.

What a scary thing to happen.  I wonder why he told others he was getting abused at home.  Could he have been ill-treated by  his sister but mistakenly blamed it on his mother?  Or, due to frustration at times, she spoke and treated him harshly  and he took her words and actions out of context?

Out of frustration when Luki is being very difficult, I have had to be stern with him only to find him cry in the saddest way possible that my heart ached for him.  His eyes would fill with tears and he would give me a big hug as if to convey an apology.  It breaks my heart when he does this and I know his tantrums are not of his choice but a discomfort? pain? fear? that I know nothing about and can't fix.  It's a hard life sometimes living with Dup15q.

I came away from work that morning having learned a lesson from this man with Prader-Willi Syndrome and his mother.  I vow to be more tolerant of Luki when he is having a fit and I hope to never have CPS involved in our lives.

On another note,  I spoke with Venus, a self proclaimed "telepath, empath, all the clair's" to get a peek into Luki's head.  I like to consult Venus every so often to find out what his really happening with Luki.  This is the closest way I have of "communicating" with him as he is still nonverbal.   Whether it is true or not, I really don't know for sure but it gives me much comfort and greater insight about him and for that, I am grateful.

  In this reading, received on her radio show, January 16, 2020

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.