Happy Third Father's Day, Papa Gabe!

"My dad is tops!" Father's Day morning.

Lucas composes a special Father's Day song
for daddy and grandpa.

Lucas is happy with his composition!

 Today is Father's Day and we started the day by giving daddy a new outfit and a card.  Lucas wore his "My dad is tops" shirt and I wore a gray dress so that the whole family could match.  We then walked to church and Gabriel received a popcorn treat which they passed out to all dads in attendance.  Lucas and I headed to the infant and toddler area after worship songs but he was very fussy the whole time.  I am not sure what the trigger for his meltdowns are because they seem to occur so randomly.  It is hard to read his mind and decipher what he wants/needs or is causing him discomfort.  He calmed down when I left the room and took him near the water fountain - his favorite.  Just like his baby videos, water seems to get him hypnotized.  I ran into another mom with a child with autism and from what she has told me, Garvey and Rosemead school districts don't have a lot in the way of special needs services. Thank God I am in the Montebello district and although I heard awful reviews about its schools, the special needs program seems to be tops.  We will be starting summer school at the end of June for 2 hours per day.

https://www.youtube.com/watch?v=3Hmd0XfCH1c&list=UUha9MeoPbTYNt6EmydvwfWw

We took the in laws for lunch at Koreatown plaza for Father's Day.  Of course, we wanted to treat but my mother in law insisted, as always, on paying.  They even returned the money we gave them for Mother's Day.  It seems money just gets pushed between us for various occasions. Lucas played at the family lounge at Koreatown made kid friendly while grandpa and Gabriel enjoyed their coffee on a bench.   We later hung out a bit at their place and Lucas took to the piano, pounded away at the keys and seemed to be having a great time - in contrast to church in the morning.  My mother in law is either in denial or not fully understanding the extent of Luki's disability.  Today, she kept saying that "he is just a little bit delayed.  He will grow up and go to college..."  Hello? What?  I need to find some literature of Dup15 Syndrome in Korean and give it to her.  She doesn't seem like a person who can take that kind of news very well - a very anxiety ridden person.  I wonder if she will support who is he or be the type to find blame with me, accusing me of bad genes? poor parenting? Who knows with her, she seems so illogical.  It is hard to tell with her but she makes me feel anxious just being around her. It's not like she is supporting us now - except for occasional baby sitting.  She even refuses to step into our house for baby sitting and insists on playing with Lucas at the mall.  Why doesn't she want to come to my home?  I keep my home clean and neat and yes I have two cats but they are well tended to. Her refusal to baby sit Luki at my home bugs me a lot!.

On our way back home, we stopped by Ralph's for some groceries and I noticed the lady in front of me at check out with a boy about 5 or 6 years of age who seemed to have developmental delays.  He had a hard time controlling him while he was impulsively grabbing gum packets by the cashier.  I could sense her frustration and maybe even some embarrassment at how he was acting. I wanted to tell her "I have one of these kids, too, I know how you are feeling so don't be embarrassed." But, I didn't.  I just watched and wondered if Lucas would be as uncontrollable and impulsive when he got to that age. How will our lives be at that future time?  Will we be happy?    On the drive back come, when things got really quiet with Lucas asleep, I wondered why my life has been filled with so many people with "disabilities" and I mentally listed off my family from my dad, mom, brothers, cousins...all who are/were not quite able to get their lives in full working order.  Something never seemed right with any of these people and I felt to be the only one sort of "making it".  I thought of the dream I had a while ago  wherein my whole family and I were running a marathon but one by one, everyone tapered off either from exhaustion, injury or just giving up.  Eventually, I saw nobody on my right or left and found myself running alone.  Back in the car, I wondered if my life purpose was being around disabled (in one form or another) people.

We event visited Gabriel's grandmother,Luki's
 great grandma,also at Rose Hills.

I pray God provide for my family's future and safekeeping.  The future is just too much to think about at times.  I really want to focus day to day and feel the purpose of the time I have with Lucas is not to fret and worry about Lucas but fill each day with joy and laughter.  Instead of saving money to have a full bank account, I will be using money for fun vacations and going on holidays to create wonderful memories.  This, I believe, is the purpose of Luki's disability.

 Yesterday, we took Lucas to Rose Hills to lay flowers by my dad's resting place.  I wasn't really thinking of going but Gabriel had mentioned it and so we went.  I hadn't realize it was my dad's birthday and noticed June 14 as his birthday on the grave marker.  For a few days, I had the song "Danny Boy" in my head and would sing it for no reason.  I never sing this song but it was a song my day sang quite a bit.  I am wondering if my dad was getting into my brain and reminding me to visit his grave.

Lucas has a moment with hal a ba ji on Father's Day.

June Fun

Lucas and daddy having fun at Lemon Tree children's restaurant.

The family looking silly at Tom's wedding reception.

http://ec.libsyn.com/p/5/3/7/537930031b14d2cc/summermcstravick052714.mp3?d13a76d516d9dec20c3d276ce028ed5089ab1ce3dae902ea1d06c88534d0cc5b39c3&c_id=7224431

http://flowdreaming.libsyn.com/the-fastest-way-to-find-the-solution-to-your-problem/comments/comments/cmnt_msg/moderated

A talk with Summer McStravick on the Flowdreaming radioshow.:

So, recently I was a radio call show caller to find out more about Lucas condition.  He lights bright colors in his baby video. He doesn't care for sound so much, the flow of imagery is really engrossing and loves.  He doesn't like the scratchiness of his diaper which he overly focuses on and it becomes a really big deal for him.  Give him lots of soft things.  He partially feels awkward being touched/held because he never really knows where things are going.  He can't read other's intentions and its a bid disadvantage.  He gets startled.  His mind is very immediate-he doesn't follow purpose. Eveything is a first time for him that's why he loves watching tv and seeing colors because it becomes hypnotic and is very soothing.  How does he feel about his life-are you happy?  He's neither happy nor unhappy-he lives in the moment. He doesnt know what to be happy or unhappy of.  He doesn't hjave any expectations because he can't project enough into the future to have ...but he is starting to finally get it.  Does he acknowledge who I am or his dad?  I am familiar and a part of his safe inner core; it's hard for him to get the depth of relationships.  He knows home very well.  Whatever you are doing there, it is right.  Let me go into a higher part of him and see what he says:  .....A higher awareness,  he feels immensely grateful to you two.  It isn't I love you but gratitude that "you took him on".  I would totally translate that as love.  He is forever indebted When you are in non material form, you are going to have a huge homecoming.  



Tom, Gabriel's manager, wedding at Palms Park, Dana Point.

Mainstreaming, Inclusion and Other Special Education Dilemmas

click here for inclusion mainstreaming and other special education dilemmas

Happy third Birthday, Lucas!

Lucas turned three years old on Monday May 19, 2014. 

We left Centro De Ninos y Padres at CSULA last week because the school policy is that when a child turns three years old, they are no longer welcomed at the center.  This leaves Lucas and me free for the whole summer before preschool starts in September. Although, we are still scheduled for his routine therapies such as PT, Speech and ABA.  We will also be starting Floortime in July.  OT has been discontinued by the Regional Center but I am hoping Floortime will take its place for the time being. Our IEP still has not taken place but is scheduled for the first week of June.  There was a delay due to the vision screening not being completed for the originally scheduled IEP date.  The school nurse was either incompetent or the equipment she was using was so outdated that it took us more than 40 minutes to try and get a reading, which we failed to do in the end.  So, I scheduled an appointment with a pediatric opthalmologist at Kaiser and she diagnosed Lucas with nearsightedness (-4.5)  We ordered the first pair which has a metal frame. After getting some feedbacks from the Dup15 moms on the facebook support group, they recommended a plastric frame brand called Miraflex so we decided to order those as a spare.  The challenge has been getting Lucas to keep them on his face.  Initially, he absolutely would not tolerate them and would fling them off but there was a definite recognition within him that things appeared different, clearer.  He was very quiet and observant of his surroundings.  It has been a week now and he keeps them on a bit longer than before.  But, still he will fling them off his face when I am not looking or he is in the back car seat while I am driving and can't get to him.

It has only been about a week since his fitting, but it feels as if he is more attentive to my ,movements and seems more engaged with his toys.  He still falls and swaggers when he walks but there is definitely a shift in his perception, if not his cognition of the environment.

First time getting fitted for glasses: the first 10 minutes: TIme lapse clockwise

We spent Luki's birthday weekend down in San Diego and visited Sea World.  His favorite thing in the world is water play and listening to music so I figured taking him to where they have tons and tons of water would be something quite enjoyable for him.  Unfortunately, he was not too impressed with the Shamu Show, dolphin and sea lions shows and slept for nearly two hours as his after noon nap.  This has been a trend for him recently, he just seems so wiped out by late afternoon that two to  three hour naps are a common occurrence. When he woke up from his nap, we gave me the biggest, tightest hug with a beautiful smile which pappa Gabe captured on camera.  He had never hugged me like that before! This is my all-time favorite picture and I still think about that moment and feel so warm and happy in my heart.


He did seem to enjoy watching the Madagascar Vacation music and dance show.  But, what he absolutely loved the best was getting wet playing with the water sprinkler in the Sesame Street Kid's Play area.  I don't think I had ever seen him sooo happy.  He got in there with all the big kids and was not shy about making his way right to the water hole.

He now flaps his arms when he gets excited or he doesn't want something such as when I try to feed him when he is not hungry.

We also celebrated mother's day this month by having brunch at the Ahlmansors.  Gabriel got me a dozen pink roses.  He is so kind and wonderful.  I can't believe it is already our third Mother's Day we celebrate with Lucas! We took a keepsake picture of this year's Mother's Day.

We leave Centro de los Ninos y padres with happy and fond memories and I will forever cherish the special mommy and me time I shared with Lucas there.  Here he had a giggle attack while playing in the outside play yard of the Centro.  

I am so happy in this moment in our lives.  We are all healthy, earning a living with steady good jobs with a little extra to go on short trips now and then and even do some home renovating.  I feel blessed, lucky and grateful to God for all the blessings.  The only thing that chronically stays with me like a dark cloud over my head is worry about the future.  Worry over the what-ifs in life that can jeopardize the little piece of heaven I have right now.  I wish I can shut that part of my brain up but it always rears itself to the forefront of my mind every now and then.

My signing off mantra:  I am always taken care of and the Universal Godhead is always looking after me and my beautiful family's best and highest interest.  

Happy Easter! Love, Lucas

ABA Update: Creating an Environment of Deprivation.

Last week, the ABA supervisor from Easter Seals came to evaluate Luki's progress with his ABA therapist.  This lady has had extensive field experience before being promoted to a supervisor and her recommendations show it.  This is the first time that I felt Pavlov's theory of reward system was even being hinted in order to illicit wanted behaviors during his therapy sessions.  Cindy, the supervisor, recommended creating an environment of deprivation of toys and then gradually coax him into desired behaviors and reward him with his wanted toys for said behavior behavior.  She told me and the therapist, Carol, to control the environment by blocking off his play area with a fence and putting away most of his toys, only leaving 1 or 2 out.  This seems like a brilliant idea but I am not sure if Lucas is cognitively able to show us the behaviors we want from him.  It's not that he doesn't want to, he just is not able.  I've noticed him taking his favorite tool box toy which I put away in the toy bin and carry it back to the coffee table where he is used to seeing and playing with.  If nothing else, I think this will help him to focus more on each toy that is laid out instead of getting distracted by too many toy options.  I created stations around the living room where he can play with different toys.  On the sofa, I have his music playing teddy bear and the race track;  on one corner, I arranged various musical books, and on the coffee table, I have his favorite tool box, a token shooting piggy and musical turtle.  I am planning on switching the toys around every other week.  

Another recommendation was to create picture cards of everyday objects for him to point at when he wants it.  I still haven't gotten around to making these laminated picture cards and don't particularly feel a rush for them as I am not sure he is able nor ready to communicate with these cards.  He started hand-over-hand communication when he wants the faucet water turned on.  This is the only communication so far, although he has started to pinch me which I think is his way of trying to communicate a want or need.  Once, he even bit my butt! I just don't know what exactly he is asking for, yet. The other day, Lucas bit his grandmother's knee at the mall. 

****

Two weeks ago, we had a blast at a new children's play restaurant called Lemon Tree in Koreatown and Lucas had a great time.  It was very similar to Little Prince Cafe at Buena Park but they had a train ride every hour which kids absolutely seem to love. A bit expensive since we have to buy meals there but well worth the money.  Can't wait to go back soon.  It's also great physical therapy for Lucas as there are honeycomb designed climbing wall, slides, stairs... 

Lucas rides the choo choo train                              He like the merry-go-rounds!    

His favorite tool box back on the coffee table.                             He does hand over hand to communicate.

Mr. Luki poo's first psychological evaluation from the Regional Center.

Lucas finally received his RC evaluation with a psychologist, who by the way initially thought he had Angelman's Syndrome by misreading his Kaiser autism report.  I had my misgivings on her ability to correctly assess him based on this fact but I had to go along - what other options did I have?  The one hour or so evaluation involved her getting a snapshot of Lucas and asking me a lot of questions regarding his development.  At the end of the session, she concluded that Lucas did not have autism and sent us off saying we will wait until next year to see if he has developed autism by then.  I gave her the Dup15q Alliance webpage and told her to read up on his condition.  Good thing I did because when her report came in the mail, she had changed her mind and gave him the diagnosis of autism.  This is when the Alliance website has directly made a difference in Lucas' life and I am so thankful for the information they provide.  It feels as though the psychologist was trying to save face by not giving him the autism diagnosis because realized she goofed when she initially diagnosed him with Angelman Syndrome.

 Is this how it is going to be in the future?  Am I going to have to fight and deal with incompetent or careless doctors, psychologists, school personnel? What an appropriate challenge God has given me.  I hate fights, arguments and disharmony of any kind, which is probably why my social circle is so small.  Is God trying to push me out of this comfort and challenging me become more assertive, aggressive, war-like?  If so, I am about to be shackled by my anger and hatred.  This can't be right.  There must be another lesson in this situation.  Acceptance, forgiveness, understanding?  This can be construed as being a push over by those who are manipulative in nature. Knowing me, I probably would swallow things until I hit that point of no return and have a complete meltdown (by myself in a closet).

Up next, an independent assessment by the school district on Monday.  This will be so crucial in what school and program he gets into starting in May.  Thoughts about his placement has brought  up anxiety and worry because I am concerned about his safety.  He walks quite a bit now, but his motor planning and stability are still weak.  I counted his falling at least 20 times during his 2 hour session at The Centro and that's with me shadowing him.  I would not feel comfortable sending him off alone to preschool unless a 1:1 is provided.  Even so, I worry about how caring and attentive the staff will be with him.  Will they understand him and anticipate his needs like I do? Even I can't stop his crying meltdowns sometimes because I just don't know what he needs and what bothers him; how would someone who doesn't "get him" handle the situation? Would they say he has behavioral issues and suggest medication  (a no go with me on this issue)?  So yes, I am having a hard time letting him go.  A few weeks ago, I had a dream where he was being attended to by someone else and I can't quite remember all the details but I woke up in tears feeling so sad for him that I was not the one who was taking care of him.

Another worry I have (perhaps unnecessary) is that I feel maybe I am not being social enough with the other mothers in class.  I get so caught up with trying to keep Lucas safe that I miss out on a lot of small talk, opportunities to commiserate and uplift each other, which can go a long way in keeping my mood up.  Sometimes, I wonder what other moms think of me and whether they are judging me. It really shouldn't matter, but I always thought I would be friendly with my child's classmate's mothers.  This situation has brought up some old wounds I carry from my days working as a legal secretary when I was basically left out of the office staff's social outings, gossip and other small talk.  I was basically looked upon as a freak and treated as an outcast because my main agenda to go to work was..well, to work.  I endured the mistreatment for over 2 years and I wished to quit on many occasions but at the time, I needed that job as it was just before my dad's cancer diagnosis and I was supporting him.  I still get feelings of rage when I think of those days and I wish I had spoken up or gave back some of the meanness they dished out to me.   At the time, I believed my work would show for itself and the bosses would recognize this and besides, I didn't want unnecessary drama to complicate my already very complicated life back then.  Shows how wrong I was because they ended up firing me...That is another topic worthy of another blog and I don't want to get into it here.

So, namaste, God be with my little family, venga a Dios.

....oh wait, some more pictures of Lucas, of course..

Lucas recently had a play date with my coworker, Elaine's son at the Magical Playground and had a blast!

  

Lucas always likes to go off away from the playground at school and explore the boiler room and golf carts parked in the lot. 

Here, Lucas shows off his acrobatic skills and his favorite activity in the whole wide world - playing with water!