The event took place at a modest-sized single family home with a small backyard. With about 15 people in it, it felt more cramped than it actually may have been. Luki had just overcome his one week long meltdown phase and was smiling and calm (thank the heavens!); otherwise, I would have cancelled going. Yesterday was his last day of a long three week winter vacation and for about a week, he must have been ill with something or the other because he was clingy, whiny and crying accompanied by his high pitch screams which usually manifests when he ill or has not gotten his way. One week at home with a nonverbal screaming child definitely added more gray hairs to both mine and Gabriel's hair! I have figured out that his baseline personality is of a calm, mellow and sweet disposition and when he gets into those fits, I know there is something definitely wrong - I just don't know what the heck it could be! He does not have a psychological issue warranting medications which many other IDIC parents claim is the root cause of their children's anxiety and aggression. Perhaps, for their children, that is the case, but for Luki, it definitely is not; at least, for now. Who knows what puberty, adolescence, and more awareness of his difference will lead to in terms of psychological well being in the future. I pray above all else (except maybe for never having seizures) for his mental happiness and well being. Yesterday's gathering, for the first time, opened my eyes to what may be in store for us in the future and I had to brace myself for a possible reality.
It was a jovial atmosphere with everyone in high spirits, happy to see each other after so many years. The air smelled so delicious of the huge pot of hot beef broth to be used in a Vietnamese noodle dish very similar to pho but with balls of pork and other exotic spices. As for kids, there were Luki, three elementary aged boys and a three year old girl. Luki seemed to be taking in the whole scenery and his eyes sparkled with curiosity at this new environment, the sounds, smell and people in it. He was definitely in one of his better moods and it seems more apparent as he ages, that he loves being around people and children who are talking, happy and laughing. At first, he was very quiet but as he warmed up to the place, he went exploring all the rooms and ran back and forth as he tends to do when he is happy. Someone commented that he is definitely not of the shy type. I agree, he jumps right in to things (and people), literally.
He ate a little food and everything was well until I noticed everyone's loud chatter descend into an eerie silence and all I could hear was Luki's characteristic humming. Although nobody was staring at Luki directly, it felt as if everyone just stopped in their tracks and focused in on the unusual sounds Luki was making and was judging him, or at least trying to make sense of him. Gabriel had not revealed to anyone that Luki has a chromosomal condition, is nonverbal and may have autism. It was as if they were all discovering this at that moment when time just screeched to a halt. Nobody approached me or asked me any questions about why he was making the strange sounds. Everyone just made mental notes to discuss this later in the absence of Gabe and my presence and they just picked right back up with their conversation. Perhaps, they felt it rude to mention anything or ask any questions. I would have preferred they ask me anything about him instead of just ignoring it and moving on. I hate to admit it, but for a moment I felt embarrassed and wished Luki would stop making those sounds but then felt shameful for what I was thinking. In an atmosphere of gossip about past coworkers and their weird behaviors, I wondered what they would be talking about Luki after we left. Had the tone of conversation not been what it was, perhaps I wouldn't have felt so ashamed.
This is the first time I have ever experienced such a feeling and I wonder if this a harbinger of things to come? Socially awkward moments and perhaps shame and embarrassment for behavior I should be proud of (he is trying to talk with those sounds!)? Would it mean that we cut social ties (not that there are many) with people who are clueless about our journey? Will we be left isolated and alone? Will people who don't like us use his condition as a tool to ridicule and shame? How will I react? When Luki was younger, it was easier to dismiss his differences because normal babies were just as underdeveloped as he. The differences are becoming more distinct as he grows older.
There is an aspect of my inner being not quite explored and developed simply because there was no need to delve into that part of myself. These uncomfortable events are chances for me to discover another layer of who I am and I should be thankful to my beautiful son for the opportunity. I pray I don't fail him.
A while back, our pastor asked us what the church community could do to support families affected by disability. I wasn't exactly sure what they could do for us but yesterday's experience gave me a clear answer to this question. What could the church community give us? This isn't a situation money can solve. A cure for the condition would be the best answer but something they can't offer. The only thing that would truly help us out is a greater awareness and acceptance of people living with a disability - notably a cognitive disability. It makes a world of difference to be around people who accept us instead of seeing us as being weird, strange and less than. It's horrible to admit, but I am somewhat relieved that there is more awareness of autism in the public even if acceptance may still be lacking. I am not happy that so many more children are being affected by it, but somehow, our family is benefiting from the increased awareness. A few weeks ago at work, we had a confused elderly patient who was kicking and screaming. A family member of another patient asked one of the nurses if it was "one of those retarded kids" making all the commotion. I felt a kick in the gut after hearing that.
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On another note, El Nino finally hit us and Mt. Baldy received two feet of snow so we headed back up the mountain and enjoyed the beautiful winter scenery. Luki loved it, especially the ski lift, so much so that he even fell asleep on the way down despite the chilly air. Gloves are a problem. For some reason, they don't stay on his hands! I wonder if other IDIC kids have this problem....
These are memories I take with me into eternity.
Homeschool program in Arcadia. http://www.methodschools.org/arcadia
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