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.
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.
