A New Experience for a New Year.

Yesterday, Gabe's former coworkers from Arthur Anderson had a small potluck get together at a home in Temple City and being the potluck loving queen that I am, I prepared Korean short ribs in the crock pot and made our way over to the house with Luki in tow.  Every so often, the close knit group of former coworkers, turned friends, get together at someone's house or meet at a local restaurant to reminisce (gossip) about people they used to work with and catch up on what everyone is doing career-wise at present. Most of them have even attended my wedding.  I have accompanied Gabriel to these events with pleasure in the past but this year, I went reluctantly and with some hesitation.   The last time they met was about two years ago at a Thai restaurant in Pasadena for a one year birthday celebration for the daughter of one of its members.  It was hard to believe the little girl is already three years old now! Luki was just 2 years old at the time and now he is a much more active 4 year old.

The event took place at a modest-sized single family home with a small backyard.  With about 15 people in it, it felt more cramped than it actually may have been.  Luki had just overcome his  one week long meltdown phase and was smiling and calm (thank the heavens!); otherwise, I would have cancelled going.  Yesterday was his last day of a long three week winter vacation and for about a week, he must have been ill with something or the other because he was clingy, whiny and crying accompanied by his high pitch screams which usually manifests when he ill or has not gotten his way.  One week at home with a nonverbal screaming child definitely added more gray hairs to both mine and Gabriel's hair!  I have figured out that his baseline personality is of a calm, mellow and sweet disposition and when he gets into those fits, I know there is something definitely wrong - I just don't know what the heck it could be!  He does not have a psychological issue warranting medications which many other IDIC parents claim is the root cause of their children's anxiety and aggression.  Perhaps, for their children, that is the case, but for Luki, it definitely is not; at least, for now.  Who knows what puberty, adolescence, and more awareness of his difference will lead to in terms of psychological well being in the future.  I pray above all else (except maybe for never having seizures) for his mental happiness and well being. Yesterday's gathering, for the first time, opened my eyes to what may be in store for us in the future and I had to brace myself for a possible reality.

It was a jovial atmosphere with everyone in high spirits, happy to see each other after so many years. The air smelled so delicious of the huge pot of hot beef broth to be used in a Vietnamese noodle dish very similar to pho but with balls of pork and other exotic spices.  As for kids, there were Luki, three elementary aged boys and a three year old girl. Luki seemed to be taking in the whole scenery and his eyes sparkled with curiosity at this new environment, the sounds, smell and people in it.  He was definitely in one of his better moods and it seems more apparent as he ages, that he loves being around people and children who are talking, happy and laughing.  At first, he was very quiet but as he warmed up to the place, he went exploring all the rooms and ran back and forth as he tends to do when he is happy. Someone commented that he is definitely not of the shy type. I agree, he jumps right in to things (and people), literally.

 He ate a little food and everything was well until I noticed everyone's loud chatter descend into an eerie silence and all I could hear was Luki's characteristic humming.  Although nobody was staring at Luki directly, it felt as if everyone just stopped in their tracks and focused in on the unusual sounds Luki was making and was judging him, or at least trying to make sense of him.  Gabriel had not revealed to anyone that Luki has a chromosomal condition, is nonverbal and may have autism.  It was as if they were all discovering this  at that moment when time just screeched to a halt.  Nobody approached me or asked me any questions about why he was making the strange sounds.  Everyone just made mental notes to discuss this later in the absence of Gabe and my presence and they just picked right back up with their conversation. Perhaps, they felt it rude to mention anything or ask any questions.  I would have preferred they ask me anything about him instead of just ignoring it and moving on. I hate to admit it, but for a moment I felt embarrassed and wished Luki would stop making those sounds but then felt shameful for what I was thinking.  In an atmosphere of gossip about past coworkers and their weird behaviors, I wondered what they would be talking about Luki after we left.  Had the tone of conversation not been what it was, perhaps I wouldn't have felt so ashamed.

This is the first time I have ever experienced such a feeling and I wonder if this a harbinger of things to come?  Socially awkward moments and perhaps shame and embarrassment for behavior I should be proud of (he is trying to talk with those sounds!)?  Would it mean that we cut social ties (not that there are many) with people who are clueless about our journey? Will we be left isolated and alone? Will people who don't like us use his condition as a tool to ridicule and shame?  How will I react? When Luki was younger, it was easier to dismiss his differences because normal babies were just as underdeveloped as he.  The differences are becoming more distinct as he grows older.

There is an aspect of my inner being not quite explored and developed simply because there was no need to delve into that part of myself.  These uncomfortable events are chances for me to discover another layer of who I am and I should be thankful to my beautiful son for the opportunity. I pray I don't fail him.

A while back, our pastor asked us what the church community could do to support families affected by disability.  I wasn't exactly sure what they could do for us but yesterday's experience gave me a clear answer to this question.  What could the church community give us? This isn't a situation money can solve. A cure for the condition would be the best answer but something they can't offer.  The only thing that would truly help us out is a greater awareness and acceptance of people living with a disability - notably a cognitive disability.  It makes a world of difference to be  around people who accept us instead of seeing us as being weird, strange and less than.  It's horrible to admit, but I am somewhat relieved that there is more awareness of autism in the public even if acceptance may still be lacking.  I am not happy that so many more children are being affected by it, but somehow, our family is benefiting from the increased awareness. A few weeks ago at work, we had a confused elderly patient who was kicking and screaming.  A family member of another patient asked one of the nurses if it was  "one of those retarded kids" making all the commotion. I felt a kick in the gut after hearing that.
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On another note, El Nino finally hit us and Mt. Baldy received two feet of snow so we headed back up the mountain and enjoyed the beautiful winter scenery.  Luki loved it, especially the ski lift, so much so that he even fell asleep on the way down despite the chilly air.  Gloves are a problem.  For some reason, they don't stay on his hands! I wonder if other IDIC kids have this problem....
These are memories I take with me into eternity.

Homeschool program in Arcadia.  http://www.methodschools.org/arcadia

End of Year Progress Report

As 2015 fades into memory and we welcome 2016, I reflect on how far Luki has come in his progress and in meeting some long-awaited milestones.  The end goal happened so gradually that it is easy to miss without actually seeing the stark contrast from the beginning to end, as seen below. I can still hear the echo of the geneticist saying he may never walk and never talk when we first got his diagonsis 3 years ago.  And it was hard to believe he ever would walk back when we were taking him for physical therapy three times a week in his dafo leg braces, spio vest, knee pads and a rifkin walker. 

2013 versus 2015.  What a difference!  I won't be limited in my thinking on what he can achieve anymore.  He is a late bloomer of a sort but nonetheless, he has reached milestones which seemed almost impossible two years ago. 

 

PT session 2013

Walking in the mall with his rifkin walker 2013

2015: Oh my how he can run! It's hard for me to keep up with him!

Gabe says this is his dance to chase away bad spirits. I think it is just so adorable! This little twurling toy has become one of his favorites.  It has been a good therapy tool as well.  He can independantly twurl it really fast which I never thought he would ever be able to do.  What would we ever have done without Gloria, his nanny, who bought this from Mexico as a souvenir.  It goes to show that we don't necessarily need expensive "therapy" toys and equipment for improved development. Now he want to twurl everything he can be it his sippy cup, spoon, fork, pen, etc...

Now, it is only a matter of time before he starts to speak.  I noticed new inflections in the sounds he makes. Gabe's mom thinks by 5 he will start to talk.  I am not setting any time line for this.  The lesson I have learned is that setting a timeline only leads to frustrations.  But oh, how wonderful it would be to hear him say mommy. I dreamt he was whining about something he didn't like and he was using his words to express his disappointment.

In December, we took Luki to the snow at Mt. Baldy.  We needed to get on a 10 minute ski lift to get to the snow and tube riding area.  I'm so glad he remained so zen through the ride but I think it was probably the most nerve racking ride for Gabriel.    

We also went to Disneyland two days after Christmas.  Lucas was just enchanted with the Christmas parade and all the lights and decorations throughout the park set up for the holidays. 

Luki got to participate in the children's ministry Christmas performance for the congregation.  He didn't sing but he didn't throw a tantum or have a meltdown, either.  He remained so calm and I am grateful he was given a chance to at least just stand there and be a part of the group.

We visited Adventure City near Knott's Berry Farm.  Gabe learned from a coworker that it is a cheaper alternative to Disneyland for the little ones.  No long lines and no expensive entry fee.  He had opportunities to ride all the rides as many times as he wanted.  The next day, Gabe pouted that he wanted to go to Disneyland. So we went.

"Early Intervention is Best!"....So They Say..

Two weeks ago, I had a horrible head cold, the worst I have ever had.  I had an ear infection, pink eye and a painful sore throat and felt like a bobble-headed zombie.  Failing to realize the severity of my symptoms, I drove myself to work and endured the concerns and somewhat antagonistic ("why is she at work if she is sick?") glares of my coworkers and decided to get myself to the ER after 4 hours of being on the floor.  Ten days of amoxicillin and 7 days of oxyfloxacin eye drops have done wonders for me, although I still have a nagging cough.  I have not taken antibiotics in over 15 years nor have I gotten this sick for the same amount of time. I have always tried to give my body a fighting chance and have taken natural remedies like manuka honey. I think I just willed myself to be healthy and took good care of myself with plenty of rest, good nutrition, supplementation and a positive outlook on life.   This time, I knew that that was not going to be enough to get me back to health or at least, not fast enough as needed to be in commission as a mom for Lucas. Being sick has also made me painfully realize my own limitations as a parent of a special needs child and I have had to accept the fact that I am not superwoman, especially when physically weak and sick.  Not being able to do the usual things for his care, being in pain and feeling fatigue made me even  more depressed and sad. It also brought me to the sorrowful realization of my own mortality and a deeper concern for Lucas' care in the future.

What broke the lucky track record of health?  As much as I hate to say it, I think it has much to do with stress and not taking care of myself as before due to the growing care demands needed by Lucas.  It's really not his fault but my own lack of discipline in managing my needs along with his.  Recently, I have had to really come to a decision about whether to proceed with the in-home therapies (ABA) he receives and it have caused immense stress that has led me to, on some days, forget to eat or sleep enough and stay in a funk all day.  We have continued ABA for over two years and it is hard on me as well as on Lucas as I, as a parent, also need to be trained in the method.  I am not satisfied with the outcome we have thus far obtained for the amount of time, effort and stress we have invested in it; let alone my growing dislike and distrust for the supervisor (see previous blogs).  Lucas still shows no form of communication, PECS has not really helped in any aspect of daily life and he still is unable to feed himself with utensils or drink from a cup without assistance.  These issues are innate problems in neural circuitry and until his brain develops to a certain cognitive level, no amount of ABA is ever going to make life easier or better for him.  This is the conclusion I have drawn and I don't care how many experts hail the "early intervention is best" mantra, it just isn't right for Lucas, yet.  I have had this gut instinct from the beginning but have pushed it aside thinking the experts know best.  Now, I find that some experts like Dr. Connie Kasari of UCLA also feel some subpopulations of autists such as Dup15q may not quite benefit with early intervention. I kick myself now for not listening to my instinct.

It's been two weeks since we stopped ABA and it has been so liberating.  Lucas seems more content and peaceful.  Perhaps, in the near future we will resume the sessions, this time with a new supervisor.  Maybe that will make all the difference.

Having a child with special needs (actually having a child period) makes watching the sickness of the world so much harder to accept than before I became a parent.  Sickness such as random violence, war crimes, domestic violence, child porn, ecologic pollution from greed, cruelty to animals, children or anyone weak and disenfranchised; man-made famines.... For each of these events, I see my son's face and it makes me sad, angry, worried and afraid.

On a brighter note, God continues to show mercy on humankind and sends beautiful souls into the world to change it for the better.  Here is a story of one such great soul who incarnates into the world in the weakest state to touch and change the hearts of so many.  I am humbled and inspired by souls like Margarite (and Lucas).  Click for Margarite's story.


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It is finally raining in SoCal and Lucas gets to wear his rain gear!

Our Annual August eekend Getaway Trip to Summer Inn, UCSB.

"And I'd choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I'd find you and I'd choose you". 

-The Chaos of Stars

I would choose you, Lucas, in any dimension of the universe, just as you are, I'd choose you.

Trinket souvenirs at Carrillo beach.

His first hike!

picture during his first hike

Luki by the lagoon

The harness helped him with his hike!

Prayer at the Labrynth

Breakfast at Carrillo Dining Commons

Luki enjoyed himself at the Carrillo Beach in downtown santa barbara.



A mothers prayer washed away into the great deep blue. God, hear my prayer


Nowhere else I'd rather be than in a tent by the beach watching the sunset,sipping wine and eating dinner with my hubby while Luki sleeps bundled up next to me. These memories will stay with me forever

Swimming Progress Notes.: My "Cat Fish"

Luki has learned swimming faster than he has walking!

He has new underwater tricks, too!

Luki has met and exceeded his summer swimming goal of 2 feet!!

World Games Special Olympics, autism study, Dup15q documentary

Dup15q Alliance funded a documentary about Luki's condition.  This short film explores the lives of three families differently affected by the syndrome.
Believe:Living with Dup15q Syndrome, a documentary

Luki made it on the local press!

He came dressed to swim and support swimmers - his favorite competition.  He also took a selfie and had Olympic skating gold medalist, Yuna Kim photobomb is picture.

We got so many goodies from all the sponsors and vendors at the World Games, USC.

I want to ‪#‎passtheflame‬ for inclusion, dignity and respect for all!‪#‎worldgames‬ ‪#‎specialolympics‬ . Luki's favorite sport! He came prepared to swim! My future Olympian ! @ USC uytengsuaquatics center

 — at Special Olympics World Games Los Angeles 2015.

We participated in an autism clinical trial at UC Irvine with Dr. Gargus. 

He started off in a good mood.

He loved the swings at We Rock the Spectrum, Pasadena.

Making great progress with swimming!

His giggle attacks are what I live for. 

Summer Vacation 2015

This summer, we opted out of summer school to do home schooling and it has been the best decision.  I'm exhausted but Luki is having a great time and being exposed to a lot of activities we would otherwise not be able to do during school session due to the time constraints.  Lucas finally got to use his first suitcase for a family vacation up to Mammoth Lakes and Bishop.  Gabriel had to go up to Bishop to inspect the power stations near the dams  for a few days so we decided to tag along. Since the company is paying for room and board, it has been a very economical way to get our summer getaway trip done this year.

Although Lucas can't yet pull his own suitcase, he has enough clothes and toilettries that won't fit into my duffle bag anymore. For some reason, I get sentimental thinking about the fact that he has his own suitcase. It's almost as if he will one day leave me to go off to college or live on his own or maybe live in a group home.  Of course, that will never happen but the thought stirs up sentiments in the heart.  

Bishop was hot but the dry air made it tolerable, especially when under the shade.  Luki and I stayed close to the Holiday Inn we stayed in and waded in the indoor hotel pool or played in the park next to it.  

Luki got stuck after falling off his bicycle.  I let him figure out getting away on his own.  This bought me time to eat my sandwhich before I have to chase him around.  

The mountains were so beautiful all along our drive up to Mammoth.

It was like christmas all year round at Mammoth Village.

Bishop was hot as heck but it got a bit nippy up at Mammoth.

It rained on our way back home.  Good thing, because we are in a drought and we need it.  Hope the rain comes down to So Cal.

Our last lunch at a Mexican restaurant at Mammoth village.  A margarita for a fond farewell.

My first view of the Sierra Nevadas.  I only knew of them from the beer I see at Trader Joe's.

Mt. Whitney in the back- highest elevation in the US.  

Luki has reached his summer swimming goal of being under water for at least 5 seconds.  Our next goal is to swim at least two feet wearing an inflatable.  He has also progressed to riding faster horses.  I am hoping to get him started on hippotherapy this Fall.