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.
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...
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":
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