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. 

A Reading with Lisa Williams May 2017

A few years back, actually I think it is more like a decade ago, (time flies so fast!) there was a show on a cable station called the Lisa Williams Show, a Merv Griffin production.  It was a show featuring the mediumship, healing and psychic intuitive abilities of Lisa Williams, a medium and clairvoyant.  The show chronicled her typical day at work where she gave readings to her clients to connect with their loved one on the other side of the veil.  I was fascinated by her ability to heal hurting and grieving people just by delivering loving messages from the departed.  She also healed sick animals and cleared up negative energy in people who seemed stuck in life.  Contrary to the stance the Church takes on such abilities as being taboo and evil, I found it strengthened my faith even more in a loving God, heaven and life after death.  I recorded every one of her shows and thought of her long after her show ended and she moved on to do her work in other parts of the world.  

Here is a sample of her work from her show. 

Last year as I was surfing the net, I found her site and discovered she was giving private readings! For such a busy person writing books, teaching and doing mediumship work to mass crowds in theaters, I was surprised she still held one-to-one private readings.  Not only that, but she was offering a 30% discount in Fall 2016 which was an added incentive for me to book an appointment with her as I had so many questions regarding the care and education of Lucas.   I reserved a spot but her next available date was in May of 2017 -9 months away which was fine because I was pregnant with Liam at the time and thought it would be nice to have about five months with him before contacting her.  Last month, I had a 45 minute private session with her covering almost all the topics I had prayed she would address from career to relationships but more importantly questions about Lucas  She was right on the money about almost everything and I feel so fortunate to have had the time with her.  The information brought forth from "spirit" through her was both healing and enlightening.  I had prayed for guidance in the care and education of Lucas and asked God to help Lisa give suggestions on how best to raise him and below is a recording of her talk on the topic.  I am forever grateful to God who gives such magnificent gifts of healing and insight to people walking among us in the living and that he has also  guided me to such people.  

She starts off in this recorded segment by addressing my marital relationship with Gabriel.  I believe when she mentions that we are juggling so many balls up in the air, she is referring to our care of Lucas and all the special support (medical, educational, behavioral)  he requires. Of course, I have heard all this information before be it from physicians, various therapists, the church,  books I've read on autism/disability and my own intuitive insights; but, for some reason, I seem to pay closer attention when the guidance is offered through people like Lisa.  

Lisa Williams, Part 1

Part 2 

Part 3: The mystery of 12

  

Part 4

Lucas is highly intelligent!! I have heard this from another intuitive before.  This makes me think twice about the current understanding of Dup15q Syndrome being an intellectual disability.  I don't think researchers see it this way.  Perhaps, they tend to underestimate these kids intellectual awareness and abilities because they are not able to communicate them to the world.  

This reading offered a lot of information for me to think over for Lucas. It has given me much needed relief and hope for the future.  I am so grateful for the added insight and will carry this information as I consider options available that present to us in the future. 

Thank you God and thank you, Lisa. 

Kindergarten Graduation and a Birthday Party

Luki has graduated from Kindergarten!  Wow, how time flies.  I can't believe after summer school he will be in first grade!   With so many things going on at home from taking care of an infant to house searching, I totallyh forgot about his graduation ceremony!! It was not on the calendar!  I kick myself for not being there and I feel so badly for him.  How sad he has such loser parents who don't even show up to his kindergarten graduation ceremony.  I still get angry when I think about it!  I so wish I could have seen it.

 Here he is in his cap and gown.

Last week, we took Luki to a birthday party for a seven year old at a big children's gym.  This is the kind of place Luki loves where he can climb high all around the room.  He didn't have a meltdown and seemed very curious of the setting and the sounds of children laughing and running around.  He wasn't running around the whole play area because he usually needs at least a day or two to get familiar with a place before he feels comfortable to be on his own.  I wish this place were near our home so I can take him there more often but we went all the way to Rancho Cucamonga near my coworker's home (it was her son's birthday).  Luki has never been around so many typical children with that kind of energy and noise.  From his expression, I think he rather enjoyed their energy and vibe.  I had to guide him on everything the whole time from getting onto a giant slide to climbing onto tunnels near the ceiling.  I wonder what the other moms were thinking about me.  Were they pitying me?  No matter, I wanted Luki to experience everything and I was not going to sit in a corner with him being an observer.

Here he is coming down a giant slide.  It took some effort to get him on top but after sliding down twice, he was better at helping me get him to the top.

At one point, Luki was in the trampoline with the other kids and he was trying hard to jump along with eveyone else.  He still has some problems keeping his balance and can't jump very high and the required socks they make him wear makes it more slippery for him to fall.  I was so happy to see him jumping along but then all the kids got tired of jumping and ran out giggling to another play station leaving Luki all aone in the trampoline.  He watched as they all left and had a perplexed look on his face as if to say where did they all go .  I know if he could, he would have ran with them.  This scene just broke my heart to pieces.  I felt to badly for him and my heart sank seeing him alone in there just staring off in the direction of the kids. Whatever hurts him, hurts me even more. Sometimes, I feel as if living with this syndrome is like having a dagger stuck inside my heart all the days of my life.


"Lord, I may not understand the path You have set before me, but I trust You to lead me.  I ask that You teach me to trust You with all my heart."  - A Special Gift.

Tae Tae's 100 Day Pictures.

How did I ever live without him?

"Lord, thank you for Your calling upon my life.  Help me to fulfill the mission You have set before me.  Guide me as I raise this little one for You." -A Special GIft