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  The school nurse was either incompetent or the equipment she was using was so outdated that it took us more than 40 minutes to try and get a reading, which we failed to do in the end.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. 

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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!

The many faces of Luki poo.

I can't get enough of this little guy!  Too cute!.  I recently discovered the website Canva.com which helps with making picture collages, graphic designs and creating awesome facebook profile pictures.  The above collage is my new facebook profile image.  Just too yummy!

Lucas is still getting his ABA therapy three times a week.  I am not sure if it is the most appropriate form of therapy for him as I have not seen any specific improvement I can directly attribute to ABA.  But, he tolerates it well and as you can see above, sometimes he gets a total kick out of working with Ms. Carol.  His favorite tool box toy still cracks him up.  What would we have done without that toy! He never gets sick of it even after playing with it everyday for over a year.  

Spring has finally arrived.  It seems we skipped winter and went straight to Summer.  We have been taking Lucas to the local park at least once a week for walking on the grass and swinging.  Daddy and Luki walks at Whittier Narrow, above.

Valentines, Disneyland and IEPs, oh my!

IEP, here we come!

But first, I must say, I'm surprised I have over 700 views for my blogs.  Are people actually reading this stuff or is it my own accidental hits 700 times?  If the former, it makes me feel good knowing someone somewhere out there is finding the information herein useful.

So, a lot has happened over the past week.  First, we took Lucas to Disneyland for the first time using the half priced tickets we purchased through his school.  I guess you get what you pay for because half the good rides were under maintenance (It's a Small World and Finding Nemo submarine were closed).  Considering what they are charging these days for admissions, we may have to wait another two or three years before going back.  Lucas, however, seemed to enjoy the attractions and looked very attentive to everything and everyone around him - which made me feel the trip was not a total waste of money.  He really liked the Pirates of the Carribbean ride which was really very macabre; but fortunately, he had no idea what that was all about.  I think he just liked the sounds, music and lights in the dark tunnel water ride.

From starting to walk a few months ago, my Luki is now climbing stairs by himself!  And, today the teacher told me he followed me across the classroom when I walked away from him. Wow!  I really didn't think he registered whether I was near or far!  I am hoping for a repeat of this before I actually acknowledge it as an  intentional behavior-it may just have been a fluke.

This week, we had our first transition meeting with the Montebello school district and Regional Center's case manager at Wilcox Elementary School.  The one hour meeting was a formal introduction of the school district (the school psychologist was present) and us so as to ensure a smooth transition to preschool and also to start preparing for lots and lots of assessments in the next five months before Lucas gets admitted.  I was fortunate to have had the binder given to me by the Resource Center representative who came to visit The Centro to give pointers on IEP and transition meetings.  The Centro has been such a blessing to me and Lucas, not just in terms of the classroom, but all the priceless support and parent meetings that has given me so much knowledge on how to navigate through the special needs world.  I vow to donate all of Lucas' toys to the Centro after he outgrows them because I really want to give back to them the support they gave me.  So blessed to have chosen the program for Lucas. In hindsight, when the program was offered to me 5 months ago, I intuitively knew, without a doubt, that there could be no other program which would measure up.  As instructed by the Resource Center representative, I took the folder they provided me and tabbed it with Luki's  records (see picture below).  I even personalized the cover with Luki's pictures as they instructed me to do.  I also made 5 copies of the Dup15q information from the website and tabbed the sections under genetics, speech, behavior, motor, treatment so that it would help better prepare the professionals to understand his condition better.  All parties seemed very grateful for the information and I felt very reassured that they would read it thoroughly in helping with their assessment findings.         

Last Wednesday, a former parent came to the weekly Wednesday parent meeting and gave pointers on how to approach our first IEP meeting.  She provided a very useful list of things to prepare before the meeting.  Did I mention how much I love this program and the Centro?  I feel so much at ease knowing what I can expect at the meeting.

On another note, today Lucas celebrated his first Valentine Day at school and had a wonderful time!  The parents had a big potluck with fried chicken and salad.  Everyone loved my salad dressing and now I have to write up a recipe!  This is going to be challenging since I never measure anything precisely as my cooking philosophy is "a little bit of this and a little bit of that"...He gave each his classmates a valentine favor and in return he received a lot of treats which he will never eat.  He still has not idea or interest in any of this but I think just the exposure is a good thing.  

Gabriel always gets it right for Valentine.  He surprised me with these beautiful long stem roses!

Really, I am very blessed and lucky.  I end this entry with the mantra, "I am blessed and lucky" repeated endlessly...

First time Lucas runs to give me a hug today after I arrive home from work!

Lucas swings at the park after a long morning of therapies.

Having waited over a year to have Lucas acknowledge me when I come home after work, he FINALLY did it this morning!! Gloria was playing with Lucas in the living room and usually, I call out his name when I enter the room in hopes that he will look at me, smile or perhaps even wave. I never got any responses from him in the past. Today, for some reason, I didn't really acknowledge him at all and started chit chatting with Gloria. After a short delay, Lucas seemed to perk up and realize I was home. He walked straight towards me (he even had to make a short turn around the sofa to get to me) and deliberately made his way into my open arms!!! I couldn't believe it! I have been waiting for him to do something like that for sooo long and it happens on the day I don't even acknowledge him at all!  What irony.

I am beginning to realize that Lucas does process alot of information around him, it just takes him a bit longer than normal toddlers to respond.  There seems to be a lag in the information that is received to processing that information in his brain and then responding in a physical manner.  Still, there are things which he is still very incognizant of like expressing his desires, averting danger signals such as the stairs.  I am not sure what more I can do for him.  At times, I feel so very sad that he can't do so many things.  It will break my heart even more if one day  he himself realizes his own handicap and becomes depressed.

So many inspirational stories of parents of disabled children have been coming my way which I find it strange and wonderful at the same time.  It's not as if I seek these tidbits of hope- and even if I tried, I really don't know where I would start looking for them.  Yet, almost on a weekly basis, inspirational stories from other parents lets me know that I am not alone. I can do this.  There is more to this situation than I know.  It is as if a divine angel or being is guiding me and nourishing my soul. I may just break out in a panic attack without support - not the kind of support like therapies for Lucas or some vague philosophical meme; but, actual stories that speaks right to my spirit that give me chills all over my body and make me weep with relief and understanding.  I have been steadily sharing these stories with the facebook support group for Dup15q, IDIC 15 and Journeys group at church.  I wonder if they have the same powerful impact on other parents as they did on me....

Here is just one such story I find (to use the words of another mom) "sadly beautiful":

https://soundcloud.com/snapjudgment/keeping-hope-alive?in=snapjudgment/sets/the-stranger
https://soundcloud.com/snapjudgment/keeping-hope-alive?in=snapjudgment/sets/the-stranger

and another:

http://m.soundclod.com/snapjudgment/different-kind-of-life-snap/s-L4pye?post_id=1224824130_10201442038312610