If I Could Turn Back Time

I’m probably going to regret writing this, but we’ve had a great few days with Jack lately. Have there been moments of sheer aggravation? Yes! Have there been moments of demands like insisting on going to Chiba for Japanese food after I’ve cooked a full meal? Yes! However, I will take any of these moments any day over the violent, scary days & nights that we’ve had the displeasure of dealing with. Jack has slowly wandered back into the chat room life over the last few weeks though. He has mainly been watching others do the foolishness that they do like have terrible cussing outrages over politics & people, things Jack has zero knowledge in. As I have said in previous blogs, Jack is a know-it-all. In one of the chat rooms, Jack had to fill out a bio. He was asked what languages he speaks. Since Jack has been an avid Dora & Diego fan since he was a toddler, of course he speaks Spanish! The boxes were checked for English, Spanish, & guess what other language? He says to me, “ do I speak Mandarin?” Unless he’s been taking a Rosetta Stone Mandarin course, the answer is no. I replied to Jack, “well no”! He then informed me he does speak the language of the Asian culture & commenced to play a song by The Wiggles in which there were a few Mandarin phrases mixed in with the predominantly English song. How could I have been so dumb to not know my child speaks a foreign language & one as complex as Mandarin, fluently!

Last night, Jack was on one of the chat rooms doing a live stream. A live stream means he is rolling video of himself & anyone that is in this particular chat room can watch, comment, or talk back if they so choose. Usually when Jack goes live, he sings pop or country songs. On this night, Jack did something different, something that brought tears to my eyes & broke my heart. He played his guitar that really doesn’t make any sound (which is a wonderful thing for us & he doesn’t notice praise the Lord),he started singing kids Bible songs that I used to play for the kids when they were smaller. What was so gutting about this, is the people that are in these chat rooms are not nice people. They cuss worse than any man or woman I have ever played softball with, every other breath is a cuss & the chat room people are malicious with their mouths. They degrade Jack, tell him he’s a child, a retard, an idiot, the list goes on & on. He’s never played Christian music before while going live, I have to wonder why he did on this particular night. I thought maybe Jack was trying to witness to the creeps, but he doesn’t really understand that at all. I didn’t hear what anyone thought of Jack singing the Bible songs, I couldn’t bear to overhear-it would of taken a good day & ruined it. Soon after he sang, Jack was right back watching someone else in a chat cussing like a sailor. When I told him that wasn’t nice of that person, he said it was them doing it & not him. We have to remember Jack has no reasoning skills. We do try to instill values in him when we feel it is safe, but he never absorbs what we say. This is what I mean when I refer to Jack as to having grandiose behavior. He knows best in his mind. This is a clip of him singing one of his favorite Bible songs during his chat room time:

After Jack got what I refer to as his “pimp” glasses, he seemed to have settled down-this was last week. His glasses get me tickled every time he puts them on. I swear I think the reason he wanted them is because someone online told him he needed to have his eyes checked as a smart remark. And just because total strangers tell him something, he’ll do it without any regard to us.

Any type of anything out of the ordinary creates a downward spiral for him. This is why we don’t talk about birthdays or occasions. We don’t celebrate any type of event around Jack other than his birthday or Christmas morning. He has an appointment at Chapel Hill next week that I am dreading. I can’t prepare him for it by telling him a few days in advance because he’ll start acting foolish, but by not telling him in advance, he’s more apt to not go. I am totally stuck between a rock & hard place! Back to the glasses. Those things aren’t going to be anything but trouble for us. He wants them cleaned 24/7, never puts them back in the case, falls asleep with them on-what a nightmare. He called the poor people at the vision center for three weeks straight everyday asking when his glasses would be in, even was on a first name basis with the eye doctors wife! He called me & asked if I would go pick them up (which I had no choice), he then told me he would call Penny (the doctors wife) & tell her I was on the way!

The boy is really too smart for his own good. One of the mistakes I made in caring for Jack is that I did not ever tell him he was a special needs child. I think that mistake alone has given him a false sense of self. I regret that so much. I’ve written about how Jack thinks his girlfriend and/or wife should look like a Victoria’s Secret model. Jack doesn’t know that he does not have the mental capacity to date much less marry a woman who is not on his level. If I could turn back time (I’ll be singing that song in my head all day now), I would certainly try to raise Jack to understand he is mentally disabled. You live & learn & wish you could turn back the clock so often. Below is a picture of me right after I had Jack, 18.5 years ago. I had gone through a very difficult styling phase with my hair-I’ll never have short hair again by choice that’s for sure. When older folks tell you time passes by so quickly, believe them. Jack’s long list of health problems started on the day he was born, our lives with Jack started in fear, but this day seems exactly like yesterday. The emotions I was feeling in this picture are still the emotions I feel to this very day. It’s a look of “pluh-lezzz”. I was actually probably mad because they gave me a sandwich to eat right after I gave birth to a big ole baby-I don’t eat loaf bread, it’s nasty! I would also obviously have better internet controls. I think if we knew what we know now about how severe Jack’s behavior was going to be, I think we would of placed him in a residential home a long time ago, it certainly would of been easier before he became so much stronger. But things are always easier said than done, who knows if anything would be different if I had the knowledge I do now. Out of all three of our kids, Jack is the sweetest & also the meanest. It is amazing to me how one person can be both. As of now, Coleman is our self-starter & genius, Ava is the most compassionate & helpful. Coleman grew up without ever really watching tv until he was 17 years old. The first show he watched was Scandal, what a show to be introduced to-he’s been hooked on tv since. Jack on the other hand has always been a tv buff but that’s largely because he couldn’t do anything else due to seizures. And Ava has been our sports gal from the age of four & beyond. It is astounding how children that come from the same parents are each individually different. Children are surprising, they can all be mean & hateful, but it’s always entertaining. Until next time…

P.S. Here’s a story about the short hair. I have written about this before so don’t read if you’re already familiar with this story. I started out with a chic, short, shag cut that was super cute. Well, I went back to the same stylist for a shape-up. She was on the phone nearly the whole time while cutting my hair. I was pregnant with Jack during this experience thank goodness. The stylist received some news about a friend of hers that was involved in a motorcycle accident. I begged her to let me reschedule but she insisted she was okay. She may of been okay, but my hair was NOT! I left her place with huge gaps in my hair, uneven sides, it was so bad. I tried to rationalize, went home, washed my hair & pled to the Lord to please let my hair look decent when I dried it. It did not! I lie in bed that night wide awake thinking & fuming over a terribly expensive & an uglier than any haircut a two year old could give herself with kid scissors wondering what on earth I could do to get revenge on the stylist. Let’s just say I am so happy I was pregnant with Jack or she would of seen someone that acted like Jack does! I envisioned myself slashing her tires, putting sugar in her gas tank-I wanted to have a full-on Carrie Underwood moment. So instead of going to jail, I decided to make a bigger impact. I called her the very next morning & told her not to cash the check I had written her, I had canceled it. I also told her it was the worse haircut ever. At that point, there was nothing else to be done with my hair other than to scalp it & start anew. I guess having a bad haircut is better than serving time in prison over a bad haircut!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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