Lucas walks into his first day of preschool like a big boy. He was wobbly with the bag pack on but walked much better without it. He lets me hold his hand and he follows me. I still send him to school with his stroller. But, he is getting better at walking with holding hands.
Lucas can climb down stairs better now. At home, he can climb up and down the small staircase from the living room to the dining room - about 8 steps- all by himself. He can climb up the long staircase but still needs help coming down. He holds my hand and the rail.
Lucas gets impatient with the merry go round. He says, "forget this, I'm outta here!" Interesting exit plan.
He used to be scared of the ball blower sound and would freak out. Now, he can't get enough of this. He pushes the button by himself to start it. I sometimes hold him up and he likes the feel of the breeze on his face and catching the balls that pop up.
L is much more vocal now. He makes these sounds all day long. I think this is a very good precursor to speech and I can't wait for him to start talking soon! I know it will happen.
Lucas has broken his glasses 3 times, lost one lens once which I found in the car. Still hates wearing them, but I am persistent in keeping them on.
Lucas gives kisses on demand and now puckers up instead of sticking his tongue out. The best milestone, yet!
A few weeks ago, as Luki was enjoying the hot summer sun in the patio, splashing away on his water table, I noticed an angry women walking down the middle of the car lane against traffic towards a young man sitting on the sidewalk waiting for a bus. She looked like she was in her thirties, a bit heavy set and angry as hell at the man she was approaching. He was also heavy set and looked like he had either autism or developmental delays. She was yelling, "I can't believe you are doing this to me. I chose you over everyone else. I was always on your side and this is how you thank me?!! " When she reached the guy, she started punching him with her fist and continued to yell and make a scene. This was going on right in front of me across the street and I could see and hear them very clearly since it was a quiet day without much traffic. The lady noticed me and started yelling at me to mind my own business once she saw that I was observing all of this. I told her I had every right to look outside my own patio and she should take her anger to a more private place. I took Luki inside because I didn't want to frighten him with this scene and all the yelling but I continued to watch them from inside. She continued to kick and punch this guy and when he had enough of her, he punched her back. I don't blame him because he really held out for a long time and tried to speak calmly to her and when she was not responding rationally, he hit back in self defense. Blood started splattering on the sidewalk and the lady had a bloody nose and bruised up face. I opened the sliding door and from the patio yelled out, "stop that right now!" She seemed very shocked that he hit her back and with "Oh my God, I can't believe you hit me! I can't believe this!" proceeded to walk back toward the direction she came from. He walked the opposite direction and I saw him sit at a bus stop bench a block away. I called the police and reported that he was sitting at the bus stop. Apparently, she walked into the corner Carrow's Restaurant and they had already reported that a bleeding woman walked into the restaurant. Shortly after I made my report, the police came and took the young man.
In situations like this, where a woman is found beaten up and bleeding, the police would most likely find the man at fault. I regret not stating in my report that it was really the woman who was the aggressor and that he was really trying to defend himself. I still wonder to this day what happened to that guy and hope that he is OK. I hope the same for that woman.
Caregiver burnout. She was either his mother, sister or a guardian who took care of his needs. Maybe she reached a point where she could not take any more of the stress, disappointment, fear, frustration, anger and a myriad other negative emotions that can come from being a 24/7 caregiver to a person with a disability. Maybe she doesn't have enough social/financial support to carry the burden alone and just finally snapped that day. And I wondered, will this kind of thing be in Luki and my future? If we get strapped for assistance and become weary under stress and fatigue, will such ugliness manifest from within myself?
Having lived with an alcoholic and possibly bipolar father, I have a familiarity with the above scene and empathize with her very well. I have had to yell, nag, fight for someone to change but in hindsight, I realize it was all wasted energy and as the saying goes in Alcoholics Anonymous, I don't have the power to change a person without their willingness. With his passing, I thought my days of being a caregiver were over and a new start, a brighter future would be in my path with my own family, that is, until Luki's diagnosis was discovered. I am clearly realizing that one of my life's purpose is to be a caregiver. How could I even have chosen nursing as a career. This can't all be coincidental. I am convinced that being a caregiver in this lifetime is a contract I made with God before I incarnated onto Earth. I guess on the bright side, that is one thing less I need to ponder and discover about myself. I have found my mission and purpose in life. .
During last Sunday's Journeys meeting, the facilitator asked us what hope looked like in the midst of going through "the valley". Many families have children with dire medical needs such as uncontrolled seizures, hypotonia, learning delays, autism, etc that place a heavy strain on the family dynamics such as the added physical burden that can lead to emotional/psychological fatigue. I couldn't think up an answer that seemed "hopeful" at the moment but I pondered this question for the rest of the day and finally came up with an answer that seemed satisfying to me. Sometimes, I wonder where these answers come from - is it me thinking them up or is it Spirit infusing its loving knowledge for me to take. The answer I received is that hope rests only with how I react to the situation. Precious energy can be wasted trying to change what God has appointed upon my family's life. What I hope for the future is that I will be a good, loving and positive motherly presence in the family. I am inventing what a "motherly presence" is as I go along since I have never had such growing up.
I can only control my reactions to the whirlwind of events that unfold before me. I have no control of Luki's medical condition, whether he will ever have seizures or even if he will ever talk. I can pray for the best, but God has the ultimate hand in the situation. I can only pray that God reveal to me the deeper meaning -His good will- in the situation and steer my family toward the Light.I can become despondent or I can tune myself to a higher vibration of energy - and for that, I need God and the heavenly realm to lift me up to that state. I can't get there on my own. So, that is my hope. I am hopeful that I have enough spiritual maturity to recognize the importance thought and attitude plays in shaping a future reality.. I also hope to always stay at that level of awareness and that this knowledge will translate into carrying me and my family from the pitfalls of despair to true spiritual wisdom and intimacy with God. I leave the details of how this would be achieved up to God and the angels who surround and protect my family.
As written out in our IEP, Lucas has 2 hours of summer preschool Monday through Friday. At first, he cried and fretted and I was so worried to leave him alone';but according to the teacher and the 1:1 case worker, he had a great time. It's been two weeks now and every time I drop him off, he doesn't seem clingy nor scared to be separated from me. He just goes right along with his teacher into the classroom. Actually, wheeled in to the classroom in his stroller - not because he can't walk yet, but because it is hard to guide him to walk in the direction I need as he still does not like to hold hands while walking and seems confused about what is expected of him every time I try to guide him with touch. I tried the toddler Rifkin walker we used since he was a little over one year old, but his little legs give out and they refuse to walk. So, to make things easier on all parties, including Lucas, the stroller works best. I have written our pediatrician about getting a special needs stroller and diaper coverage through our insurance and she has written a prescription for them. I am still awaiting a call from Kaiser to see if these are included in our benefits. It would be great if we just get coverage for the diapers. Lucas tends to stick his feet on the wheels of his stroller making it stop every so often and this is why I am requesting a special needs stroller. I hope we are able to get these. The MacLaren special needs stroller alone costs over $600.
Here are some pictures from his first day at school.
As I remember from the days at Centro, Lucas can't sit in regular chairs so I have the teacher use his beach chair in the classroom. It seems to stabilize him more. The occupational therapist at school said that the chair is not helping with trunk support and posture so they ordered a special chair just for him. I remember these plastic chairs with high sides that also turn into tables when placed sideways. He used to slip right out of them but I am hoping he is able to sit in them now that he has better upper body support. He used to sit in his Rifkin chair which had a center pole between his legs so as not to slip down.
Aside from being a better sitter, Lucas has become quite the climber! He climbs everything now - the stairs (still on all four), the dining room table, his high chair, onto the car seat, sofa, etc.. anything he can climb, he will. He still doesn't seem to have much danger awareness so now I have to watch him like a hawk and be on my toes at all times. I just look at the sofa forlornly and reminisce the times I used to just lay there and watch T.V.
He is making strides in other areas, too. One day, I blocked his entry into the bathroom by standing in front of him with my legs open. He got on his knees and crawled right between my legs and went straight for the bathroom sink! Now, that is a thinking brain! He shows much more control and dexterity when playing with his toys, too. Even though the toys he has are the same since he was less than one, he always seem to be discovering different aspects of the the toys every day and so doesn't get bored with them .
In about a week, Lucas will be participating in his first ever clinical trial on Dup15q Syndrome at the UCLA center for autism under Dr. Shefali Jeste-one of the clinicians for the Dup15q Syndrome with collaboration with Dr. Connie Kasari, a behavior intervention specialist. Dr Kasari's research interest include :
Social-emotional and cognitive development in atypical children
Randomized control treatment studies of social and communication behavior in children with autism
The actual study is a cognition and communication study that involves a three hour questionnaire. They are also offering us a 12 one hour sessions of behavior intervention free of charge for participating in the study. I think this will be good for Lucas and I am hoping for some improvements in his cognition and awareness after the intervention sessions. The below is information about the study taken from the Dup15q website.
Cognition and Social-Communication Function in Children with Dup15q Syndrome
DUP15Q AND AUTISM
Children with 15q11-q13 duplications are at high risk for neurodevelopmental disabilities, particularly autism spectrum disorder (ASD) and intellectual disability (ID). The UCLA Center for Autism Research and Treatment (CART) is a leading center for autism research and has been named one of the three national Autism Centers of Excellence. Studies in CART have been focused on defining clinical subgroups within the very heterogeneous autism spectrum in order to design targeted interventions that are tailored to the specific needs of each child.
What is the purpose of the study?
This study combines the clinical expertise in ASD and ID of Dr. Jeste with the intervention expertise of Dr. Kasari to comprehensively and systematically characterize cognitive and social-communication function in children with dup15q syndrome, using standardized behavioral testing, play-based assessments, and EEG. The overarching goal is to determine if there are specific areas of strength or impairment that may serve as targets for behavioral intervention.
The study will involve approximately 3 hours of testing, including parent questionnaires, behavioral evaluations of the child, and a 20-minute high-density EEG session. We will provide each family with written and verbal feedback on the behavioral testing. Furthermore, a subset of children will be entered into a pilot behavioral intervention for social-communication function for a total of 12 one-hour sessions. The intervention will be conducted under the supervision of Dr. Connie Kasari, a leader in intervention research for infants and children with developmental disabilities.
My precious Lucas is getting cuter everyday. He is also getting bigger and heavier, too. I can't believe how fast he is growing up but I still see the face I saw the first night I held him in my arms. Much to think about in terms of getting him a sibling. Now that he will be starting preschool, it may get a bit easier for me during the day and perhaps I can also conceive - God be willing, I feel this needs to happen for the sake of the family and especially for Lucas. The family just doesn't feel complete with just the three of us. During dinner time, I always feels as if there is someone missing. However, I worry about how the burden of being a "caregiver" would be unfair to the sibling. Will he feel ashamed of his brother's condition? Will he resent is responsibility? I don't want to impose too much on him and I pray to God that I will have another child only if he provides for the best opportunities in education and social connections for him/her. I told God that I would not have a child otherwise. It would break my heart so. He/she will be loved so much. I love him/her already.
Through Dr. Hylas, a naturopathic doctor, I discovered this video that reports on how a mother of a child was barricaded and forced to relinquish the custody of her daughter by the swat team all because she did not want to administer the antipsychotic drug, risperidol. How could this have happened and of all places, in America? The State basically overrode the parent's right to her child even when no evidence of abuse or neglect was found. I am in shock and disbelief but mostly, I am in fear. Is this the future that awaits Lucas and myself? Will I be forced to administer psych meds to Lucas if the schools deem him to be "psychotic" or have behavior issues due to his genetic condition? This morning, as I woke up from the evening slumber, I thought the world was coming to an end - at least my world. I felt my heart race and an overwhelming feeling of doom lay heavy over my head. Surely, this must be a full blown panic attack. I kept re-thinking about this mother's plight and what injustice was being perpetrated. How would I feel and react if such a thing happened to my son and I? Who would be our advocates..against the government?
To make my anxiety get even more heightened, I watched a documentary (above) chronicling more cases where parental rights were overrided by the government from loving and caring parents. I am so confused as how these things can happen.
I shared this with a facebook support group for my son's genetic condition and the administrator of the group felt this was inappropriate content to share in the support group and deleted my post. I was confused. He states that my political views have no place in the group forum as if I were trying to promote my own political viewpoint onto the members. How could this issue not be appropriate for all parents of special needs children? If anything, issues of medications, home schooling, therapies, etc,,,etc.. should always be a choice that the PARENT, not the State makes unless there is gross abuse and neglect. This issue should be at the forefront of all special needs parents.
As I think about my little boy and his cute giggles and the way he squints his eyes under his wire glasses, I feel a heaviness on my chest and the tears just roll down my expressionless face uncontrollably.
I don't want Lucas to know how mentally hard it is for me to deal with his condition. He may not understand the complexity of emotions I go through but if he did, I am sure he would feel very hurt and sad that he is the reason for my anxiety. This is why I always remind myself I fortunate and lucky I am to be a mother to such a beautiful and wonderful child like him. He is the reason my heart sings.
I will never let the above cases happen for my family.... Never.
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.
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.
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