Summer of 2018.

Photo booth at Audrey and James Wedding

 

Lucas will be starting second grade in two days and I marvel at how my little baby has turned into a second grader already.  I've been looking back on all the Instagram pictures and videos (link) I posted since he was only a few months old and a sense of pride comes over me as I see how far he has come and is now a healthy seven year old boy. 

 He still smiles and giggles just as he had when he was one year old - that hasn't changed and when he is serious, he has the same gravity of expression as if the whole world rests upon his shoulders which I saw even as a one year old. It felt awkward that I would play peekaboo or silly games with him when he felt very much like an adult in a tiny little body and I worried that our lives would be somewhat boring - but boy is it not boring!! Never a dull moment in our household - not necessarily because of childish antics but because of Dup15q. Luki's personality is just so mild, calm, serene, mature, deep, serious yet giggly,too.  It's easy to overlook his signature personality, the uniqueness of his soul and presence when faced with a serious intellectual disability and it can be easy to dismiss his unique quirks as just a part of his disability, but I try to recognize what part of Luki is Luki and not Dup15q or the side effects of medications.  My cousin's son just got married last weekend and I remember having babysat all his siblings and his cousins, I recognize a little piece reflected back from within themselves which hasn't changed a bit since they were tiny infants. Is it the soul that stays for a lifetime and stays constant  even as the physical body transforms so many times through the various stages of development?  Some things never change.  

My little Liam is a bundle of joy and lightness compared  to Lucas.  That's just who he is. He giggles at the drop of a hat and plays peekaboo with me and even ventures to lift people's shirts to look for their belly buttons and once discovered proceed to show off his own belly.

 Liam attended a music class this summer where he learned the difference between a glockenspiel, xylophone and a metallophone  (not really, he is still clueless, but I sure learned alot!).  Lucas sat on his Convaid stroller munching on his cereal while watching Liam and I sing and dance in circles . One third of the cereal ended up on the floor as he still hasn't mastered the pincer grasp and since he still can't drink from an open cup and put the cup down after taking a sip, there was some spilt milk on the carpet floor.   So grateful Lucas never had meltdowns (thank goodness!) during class and he actually seemed to be enjoying just watching the little babies and their parents having a good time.  And many parents gave sympathetic glances over to Lucas and me and I felt grateful we were being accepted during the class.

Music class: playing the african drum

Dancing to La Bamba as Luki watches from the back

Dancing to La Bamba as Luki watches from the back

playing the metallophone

Lucas has breakfast while Liam attends music class.  Here's Liam snatching a few of Luki's cereal.

Liam is shy with strangers.

Today's music class is with pots and pans! 

Lucas has  had quite a seizure adventure this summer.  At the end of the school year, his seizures were getting worse by the day and the school nurse gave me a thick packet of seizure logs which I shared with the neurologist.  Things were looking so bad that we were even considering a VNS implant.   We tried two different medications -felbamate and  lamictal and stopped keppra altogether which I should have done a long time ago as it was really having no effect in stopping his seizures.  Felbamate seemed to make his seizures worse so after titrating it up for a week, we brought it back down in another.  We then started lamictal which seemed to be working well but then we noticed rashes all over his torso, arms, feet and hands.  I thought it was a side effect of the lamictal leading to Steven Johnson Syndrome but he actually developed hand mouth foot disease! No surprise there as he always takes his socks off at Party Kingdom and the PlayPlace at McDonald's - his two summer hangouts.  He spiked a fever of 103 for a day then it took about 2 weeks for the rashes to heal.  Gabriel caught this from Luki but was mistakenly told by his primary physician that he may have gout.  Only when he shared pictures of Luki's rashes with his brother who happens to be a physician were we aware of hand-foot-mouth disease. It's misdiagnosis like this that makes me suspicious and distrustful of medical doctors. Gabriel was so close to starting gout medications! Ugh, stuff like this really makes me mad. Who knows what treatments for Luki's seizures are also totally off the ball and inapropriate?!  We  stopped lamictal althogether but Lo and behold, his seizures have completely stopped!!  He is currently only on banzel but I have no idea what stopped his seizures. Was it the fever, can infections such as hand-mouth-foot disease stop seizures? Was it the felbamate or lamictal or the synergy of both? Was it the longer sleep in the mornings during summer vacation( he would sleep until 9-10 am). There was a period when Luki went for almost three months seizure free when I started high dose of DHA (see previous blog on subject blog) but then the seizures returned.  Will the seizure return again within a few months time?  I wish I knew what the triggers for onset are and why they mysteriously just disappear.  At times, it feels as if his brain needs to get the seizures out like having a big bowel movement and once all those haywire electrical discharges are out, it gets satisfied for a while, but only for a while.   He is not had one meltdown since his seizures have completely stopped.  I am not starting lamictal back up until he starts showing signs of seizures again. I am thankful but perplexed. 

It was a hot summer and Mondays were designated as mommy-and-me days with Lucas at Newport Beach while Liam attended daycare learning how to finger paint and use a fork to jab food. Liam makes so much progress at daycare that my mother in law thinks I should send him more often. His speech is still very delayed (he is still nonverbal) so the pediatrician and the occupational therapist at Kaiser recommended us to the Regional Center for Infant Stimulation and Speech Therapy sessions at home.  This all feels like dejavu and I immediately felt overwhelmed at the thought of having to juggle therapy sessions for both Lucas and Liam!  We may even have two therapists in our home at the same time working on each child.  I am praying for strength and stamina to do all of this.

This summer, I cancelled way too many ABA sessions so that we can go play in the kiddie pool in the backyard, go to the Playplace at McDonald's, swing at the park and jump on tampolines at Play Kingdom -- a giant indoor playground for kids going crazy on sugar and adrenaline.  Luki climbed up a giant ladder and came down a slide all by himself. 

Mondays are Mommy and Luki day at Newport Beach

 He also contracted foot mouth and hand disease there because he kept taking his socks off.  I've learned to use sports tape to keep his socks on from now on

Play Kingdom. Luki climbed up all by himself!

Hand-Mouth-Foot disease rash 

Sports tape!!

By the end of the summer, he seems not to have much interest in going to these places anymore.  Maybe he is over it already,  We never quite made it on a Disney cruise, but we went on a weekend getaway to Santa Barbara at my alma mater and stayed in one of the dorms converted to a "Summer's Inn" and had a great time hiking along the lagoon, exploring the campus and hanging out at Goleta beach and eating yummy foods. These are the many small moments among many that made up our summer of 2018 and they will stay with me forever.  I guess these little moments are what makes up life. 

Backyard fun in the kiddie pool!

Riding the Lil Toot at Santa Barbara 

Tae Tae is an honoray junior captain steering the wheel

Fun at UCSB, Summer Inn

Fun at Goleta Beach

Summer Inn

UCSB Lagoon

Mr Fussypants

Went to Ronald Reagan Presidential Library at Simi Valley on our way back home from Santa Barbara and look how happy Luki looks!

On the Lil Toot going to the harbor

Lunch at the Santa Barbara pier

The boys are wiped out from all the activities!

Splish splash at our new backyard

Swinging with mommy at the park.

A Fun Day at the Beach!

Lucas went to Newport Beach for the first time this summer and he had a wonderful time wading in the water and getting pushed by the oncoming waves.  He ran full speed into the water when the waves waned and I had to keep him on a harness to stop him from going in too far into the ocean.  He is getting too fast and too big for me to handle without reinforcement.  He did his happy dance and his signature laugh when he is immensely enjoying something.  After he got cold from playing in the water, he walked over to the hot sand to warm up and be in zen. He lay on his tummy and I enjoyed the contentment on his face. I think the warmth reminds him of the jacuzi which he loved so much and probably misses after we moved out of our townhouse.  Once he got too hot, he would walk back into the waves and back and forth again.  

It was a busy day at the beach and I was feeling self conscious of the fact that I had Lucas on a harness.  The "leash" attached to a shark shaped backpack is actually a dog leash which I bought at Petco.  Unlike regular toddler leash/backpack combos this is the only one that is strong and long enough to give him some freedom to roam without me right by his side and it is working well for us at places like the beach or the park.  I hate drawing attention to myself in large crowds and I wondered if people behind me were talking, staring and judging me.  At one point, a woman walked toward me and I was bracing myself for her to berate me on what a horrible parent I am to be having my son on a leash like a dog (this has actually happened to me at a park by another parent).  But instead, she shared her story about her 21 year old son who also has autism and is living independantly.  She said a few things about IEPs and vaccines but what stuck with me is when she told me not to care what other people say or think about the leash/harness situation.  It was such a comfort for someone to actually reassure me verbally, in real person, that what I was doing is OK and that I am not such a horrible parent.  I can get support in social media support groups when I need it but it was something else to have a real person next to me talk to me so kindly.  I felt confident for the rest of our stay at the beach and she was just what I needed at that moment.  She didn't have to come up to me and talk but she did and it made the world of difference. People right now seem so angry about everything and everyone that I hesitate to approach anyone! What a lesson it is for me to not be shy or afraid of approaching people, make small talk and give a few kind words of encouragement when I can.  

It is scorching hot in southern California!  Yesterday, Tae Tae went to visit the beach for the first time. What a difference between him and Lucas at the same age.  Tae Tae runs all over the beach and even made "friends": with a couple of teenagers!  He is not shy at all!  He ran to and away from waves giggling so carefree.  It was such a joy to see him play so well and I couldn't help but compare my experience with Lucas when he was of the same age.  Lucas was so floppy and wasn't walking although he enjoyed the texture of the sand between his fingers, he never smiled at other kids or laugh and babble like Liam.

It is hard to take both kids to the beach and I could never do it alone with out someone with me.  That night as I lay Lucas to sleep and I replayed our time at the beach over in my head, I changed the script  with Lucas without Dup15q.  I replaced my memory of chasing after Lucas and having him on a leash with him helping me set up the umbrella and laying out the chairs.  I saw him play with Liam as they walked hand in hand towards the water, both boys giggling with excitement as the waves crashed on shore. I heard Lucas tease his little brother and chase him around the sand.  I saw Lucas and his dad chatting and walking to the restaurant across the street to get lunch and he was helping his dad carry the food back to us.  I saw Lucas eating his corn dog all by himself and help feed Liam his baby food then build castles in the sand as Liam cooed and watched his older brother turn sand into a fort!

 Then I quietly cried myself to sleep.

An Old Broken Crockpot, An Old Wooden Spoon.

I have an old crock pot that has moved 3 times in the last 18 years with me. The timer is broken and there is only one temperature setting for all 4,6 and 8 hour settings.  It should have been tossed a long time ago but I just can't bear to part with it and I still use it occasionally even though the food sometimes comes out overcooked and I have to keep a vigilant eye on the food. It feels like an old friend and every time I bring it out I find myself spacing off to memories of meals shared with friends, coworkers and family of long ago.  I can still smell the delicious aroma in the house when a stew, roast or ribs marinated for hours on end and it's such a comforting feeling to go back to when I am feeling down. Not many friendships have lasted as long as my relationship with this crockpot. How sad is that? People come and go in our lives and they stay for a season for our soul's growth then depart and I am grateful for all the lessons I have learned from them and knowledge gained.  For some, I am grateful that their negative presence is no longer tormenting me but even so, my life is richer, my knowledge deeper and I am stronger because (in spite of?) them.

I also have an old beaten up wooden spoon I've used to stir countless sauces on the stovetop and every time I see it in the kitchen counter, I feel at home and happy and even feel loved! Is it sad to say that some of my lasting "relationships" are with inanimate objects and my cat of almost 15 years?  So many people have come and gone in my life including deaths, siblings who are estranged,  "friends" from school long lost.  In hindsight though, I don't think I really ever had very deep relationships with people and maybe it says a lot about my personality and my independent streak.  I've always felt so different from everyone around me and didn't feel as if I could trust them.  Maybe, I just have deep seated trust issues.  I've heard also on the news somewhere that it is almost impossible to make deep friendships after the age of 40.  It does feel a bit lonely at times and it seems harder to make friends as I get older and busier.  Also, I get so set in my ways and not as open as when I was younger. Who would also be able to understand and commiserate with me in my special life with Lucas? 

Ableism versus A Mother's Heart: The Head Knows but The Heart Still Weeps.

Last week I came across a viral video made by a mother of a child with autism where she pours out her heart in full honesty and shares her raw feelings about the things she will never do with her son. 


Below is a link to her video:




The Last Time We Believe This Is Going To Be Okay


 I believe most parents of special needs children have a similar mindset (if they are honest) and there is a grieving period that needs to be passed though. I believe in moving through the grief and not staying in it and also find healthy ways to do it because if I deny it or stay stuck in it, I could easily find destructive alternatives to "medicate the hurt" (drugs, alcohol, shopping addictions, rage, self harm, anxiety, depression, etc..) which would do nobody any good.   I mourn the child I thought I would have, bury it and then accept the child that was given to me and I try to find ways to highlight attributes of  beauty and strength within Lucas and in our unique situation.

Another parent with a special needs child blogged in response to Finding Cooper's Voice's video by criticizing her approach to her son's autism citing that her reaction is a very detrimental form of "ableism" and such videos that seem to be helping is actually doing more harm than good to the disability community.

Here is her blog link below:

Why that response video to the “Last Time” is ableist and encourages ableism.

I get it. I see where the author of the blog, Lisa Lightner, is coming from.  I had an alcoholic father who took sole custody of my two older brothers and I and he was totally incapable of taking care of us, let alone himself.  I remember my aunt would come by often to cook for us, do laundry and whatever she could to help us out and although I appreciated all her efforts, she also lamented about how sad our situation was and how pitiful us children were and she worried about us and on and on, etc..etc.. What was worse was she would say these things in front of other people in our presence and we hated her for blabblering on and airing all our dirty family laundry to people and it made me feel humiliated and ashamed.  I appreciated her help but I wished she would just shut her mouth.  I know it came from a good place of love and concern but it was annoying and did little to help us feel better about our situation and ourselves. 

In a way, I guess this is how people with disabilities see ableism.  Who needs to be told how their lives are so pathetic, sad and hopeless?  Yes, it is a hard life but most people have issues and people with disabilities just have a unique set of issues and different challenges than most. Their souls came to experience a unique form of being (for whatever reason), and it is important that positive attributes be highlighted instead of people focusing on the doom and gloom.  Likewise, parents of special needs children also came to experience this interesting life with its unique challenges and joys.  I am not sure exactly why we would chose to do so but believing that it was our soul's desire empowers me and doesn't make me feel like a victim of a circumstance. As a parent with a special kid, I know this but what the head knows, the heart still weeps.  I know all this about my disabled son and I remind myself never to say and do as my aunt.  I don't want to see him as a pitiable human being because he is not.  I want to focus on his potentials and highlight his strengths even on those days when it may be difficult to do so.  But, even though my head knows this, I still find myself crying whenever I am left alone to think about his condition. My heart always grows tender when it comes to my children.

I am eagerly anticipating the release of a book called Unshattered Faith by Diane Kim. The arc of the book juxtaposes the journey she takes with her son with autism against the 5 stages of grief as outlined by Elizabeth Kubler-Ross Click here for the 5 stages of grief. Diane Kim is an evangelical Christian who has a son with autism and in her book shares her struggles of accepting her son's diagnosis as well as grappling with the question of how a loving God she serves (she was a missionary) could do this to her family.

Here is a link to Diane Kim's book on Amazon:
Unbroken Faith: Spiritual Recovery for the Special Needs Parent

 I still mourn and weep and as  Diane Kim says, "grief is like a ghost that keeps coming back".

Today, while Luki was at school and Tae Tae was at daycare and as I sat alone at home with a cup of tea, I couldn't stop weeping.  In the presence of people I am fine but every time I find myself alone for any period of time, be it at home alone or out in public like at a coffee shop, tears just roll down my eyes and I feel this incredible sadness.  I carry my sunglasses wherever I go now.  I don't know where it comes from because I thought I already came to terms with the whole disability/ autism/dup15q/epilepsy stuff.  Yet, I am glad and relieved to know that I can cry and I don't have to bottle my feelings up and hide them, deny them or pretend it is wrong to mourn and weep.  I am trying to be gentle with myself and allow myself to move through my feelings and I actually do end up feeling much better after a good cry.  I don't think I am where Lisa Lightner is and I wonder if I ever will be but truthfully, I don't want to be where she is.  It feels harsh and not very compassionate.  The caregivers also have a unique and challenging journey that parallels the journey of the disabled yet it is different and separate.  This is an intimate journey between the caregiver and the cared for.  Our paths are intertwined and we are both  entitled to our own stories without there being a conflict. Both our stories need to be heard and respected, without judgment because there really is no good and bad - it's all just there and it all just is.  Is there really a right and wrong way to grieve?

Perhaps, an agreement was made in heaven between myself and Luki that we would experience this unique life together when we got here on Earth - for whatever reason.

A conversation may have taken place there which could have gone something like this:

Lucas:  Let's go down to Earth and live a life where I will play the role of an intellectually disabled son and you can play the role of my mother.

Me: Sounds like an adventure! Now, let's pick a syndrome. There are so many.. How about this here called Dup15q Syndrome?  It includes autism, seizures, hypotonia, speech delays. Let's throw in incontinence and maybe you can just be nonverbal for added challenge!

Lucas: Ok, that sounds interesting.  This is going to be  intense for both of us!  Are you sure you want to experience all this?

Me:   Yes, so that ______(I can't fill in the blank as I write this blog because I have no idea why we would have agreed to it, although I am hopeful that with time the answer will reveal itself and it will all have been for good) We'll experience everything this situation entails and when we get back to heaven someday, we will compare notes on what we learned about ourselves, the world and God.

And so with God's blessing, our wish was granted. And down we came.

but I digress...

After a good cry, I watched the opening ceremony of the 2018 Winter Paralympics held at Pyeongchang.  I wonder why TV networks don't air the Paralympics but had such wide coverage of the 2018 Olympics? Not enough of an audience?  It was an amazing opening ceremony and it lifted my spirits.  Special Olympics is definitely the opposite of ableism and I wish people with disabilities can always be celebrated as they are at the paralympics. Ah well,  a shift in consciousness takes time but seeing how South Korean society which viewed disabled people with disdain is now hosting the Paralympics, I know change is coming to the world. 


Enjoy the opening ceremony below:

Lynn Ferguson, Iceland

https://www.youtube.com/watch?v=GnLtj19kzFk

Summer Vacation has to End NOW!

This may sound not-so-loving coming from a doting mother (and I do dote on Lucas), but summer vacation needs to end now! It has only been a month since summer school ended and he has been home with me all day but in this short span of time, Lucas has gotten into more shenanigans than he has the whole year.  To tally up: Lucas has already landed in the ER twice requiring stitches on his lower lip and chin; first fall from his activity set in the patio (see previous blog) and another fall while going down the stairs in the most goofiest and dangerous way possible in his already hypotonia induced drunken walk.  He has broken 3 ceramic plates from his growing curiosity of everything in the kitchen sink and counter.  It's funny how he never pulled out pots and pans from the coverts as many typical children that I have babysat have done.   He fallen down the stairs twice and  has developed an aversion to bathing for some reason.  He screams and panics as if in sheer terror when I announce "bath time!".  What the heck could have triggered this behavior?  I am not sure but as I try to pretend to be psychic and a mindreader (which would really help me out raising Lucas) I am thinking maybe he felt the cold water on his skin and the sensation made him afraid.  The tap has always needed time to warm up but why does he react now and has never noticed it before?  Are his senses developing more and he is now aware of more sensations that were unnoticeable to him in the past?  If only I knew and had the answer.  He has begun to pinch his neck and abdomen incessantly and sometimes pinches me, too (not sure why, maybe he wants to make sure this is all not some really weird dream). Could he be having skin issues?  Itchiness? Allergies? This not knowing is the hardest part about raising Lucas.   He refuses to go out to play in the patio (he is traumatized from being locked out there!) He was playing with water in the wading pool and I had the patio door closed because the air conditioner was on and it was a very hot day. He didn't seem distressed to be out there but maybe being "locked out" scared him.  I am just coming up with my own reasons out of the top of my head and it is impossible to know if they are true but there must be a reason why these insights pop into my head, right?  Mother's intuition?   He is eating poorly and we have wasted so much food (he refuses to eat anything on a spoon or fork) and has had almost daily meltdowns due to boredom or something else (God knows what).  Not to mention my own meltdowns  as I feed off his vibe.  He definitely misses his routine of getting up in the morning and going to school and I think he misses his classmate friends, too. And, I miss getting to drink a hot cup of tea or coffee in the morning instead of a cold one in the early afternoon when I get a chance to drink it.  We are restarting ABA but it won't begin until September.  It would have been perfect timing to have had it during his vacation.

Most days, Lucas just runs around the house back and forth, falls off the back of the couch head first landing on his hands (he looks like a gymnast when he does that), and goes to the kitchen to break stuff like plates. Around mid afternoon, he gets bored of what he is doing and has a meltdown.  I then try to take him for a walk either around the complex, park or the mall. One thing he absolutely does love are car rides.    Some days he enjoys his outing but other times, I am stuck with a major meltdown in public with a scared infant (my younger son) in the stroller.  We went to LeFunland and L had a major meltdown in the food court.  He refused to sit down, and I stuffed my face as quickly as possible, and ate standing up while all the people just stared at us.  I should have ordered a happy meal to go but we were at the table with a tray and there I was with my mouth filled with a burger with ketchup running down my chin with Luki in one of his foul moods.  Some people looked sympathetic and I got a 'God bless You" from a lady who said she has two kids with autism of her own.  I said God bless you right back at her.  Two! She must think I am a saint.  Another lady looked irritated and came by to say,"he is so loud!"  Well, no shit sherlock! I would have profusely apologized for the noise but both my cheeks were filled with food like a chipmunk that I could not get the words out. I was trying to eat as fast as I could and get the heck out of there.

I probably should be doing more therapies with him but it is so hard with an infant to care for.

Today I received a member notice of authorization of services from my health insurance for applied behavior therapy through Easter Seals.I am wondering if this is what Lisa Williams was alluding to when she said "help is coming".

Dup15q Alliance Family Conference 2017: Navigating the Future.

Last Saturday, I attended a memorial servic for a little seven year old boy at church who passed away from SUDEP.  Wolly (not his real name) suffered from severe seizures and  tried 10 different antiepileptic medications with no seizure reductions. According to his parents,  they found him cold and unconscious in the morning and they could not revive him.  They are going through my worst nightmare right now. His parents, Lisa and Miguel (not real names) attends the same support group at church for parents of kids with special needs as us.  Out of everyone's stories in the group, their story resonated with my own journey with Lucas because our kids were the only two in the group who suffered seizures.  I bought a sympathy card but could not find the words to write in it. Had I not a child with a similar condition, I would have written the usual cliche sayings.  This time, I just stared at the card and my mind was a complete blank.  I wondered what I would want to hear had I been in their shoes and what would give me comfort and the only thing that felt right was "we are here for you if you need anything".  I think that is what I would want to hear the most- knowing that there is a community of love and support around me that cared for my family in such times.  

The very next day, our family attended our first Dup15q Alliance family conference.  It was held locally at Redondo Beach which made it easier for us to attend.  It started on Sunday evening with a meet and greet and ended Wednesday afternoon.  We were only able to attend for two days, Monday and Tuesday due to Gabe's work obligations.  It was a positive experience and we were able to meet a few children whose behaviors reminded me so much of Lucas.  We weren't able to meet a lot of people because we felt so rushed going from one session after another and keeping both kids calm and occupied can be a challenge.  So many faces seemed familiar from facebook that I felt I knew them all already even though we have never met.  The presentations we liked most were for communication technology, children's parade, research updates and moms' discussion sessions.  They even had researchers who were taking data on site and Lucas participated in a gait study and also a DNA study.

We made it to our first conference!

Even Tae Tae got dressed to show support for his older brother.

"Believe" wristbands from the Dup15 store. 

Tae Tae is the unoffical keeper of the flags.  

The Children's Parade: Luki gave so many high fives!

He enjoyed eating the landscaping around the hotel. 

His latest thing is chewing on leaves. 

Washing his hands always calms him down.

He had a good time!

looking cool.

Dinner at Redondo pier after a long day.

Time to reflect. 

This is how Gabe eats dinner now.  

This is how I brush my teeth now.