As I sit in front of my computer, I listen to the silence of my house. Erykah Badu is jamming on Pandora, my T.V. is mumbling in the other room on ABC because T.J. cannot sleep without the noise. I need to get him a white noise machine or a radio or something, maybe that would help and I could turn off the T.V. at night. Most nights like tonight it’s almost ten at night and I’m sitting in my room in front of my laptop which seems to be my only outlet to the world most days. Most days are spent shuffling T.J. to place A, Libby to place B, and arguing with Terran about going to place C. I scribble thoughts on pieces of paper on my front seat and out of one of those scribbles came this rant.
I am a mom of three, autism controls my world, I sometimes feel lost, most times, I am alone, but God placed me steward over these beautiful lives for a reason.
I don’t think that I often take a moment to stop and look at the beauty that surrounds me. T.J. has big brown eyes that tell a story. He is often detached from the world that we are in, but when he is here, he is on it. In 2005, my little boy stopped talking. That sparkling smile was gone; it was replaced by a child that at times you would have thought was at the Wailing Wall crying out for our sins. He was fractured, broken, he was lost inside himself and I did not know how to get him out. After a year of intense therapy, he entered school with ten words in his vocabulary. My favorite of the ten, COW. It was the first after so long. I look at him now, I am amazed by the child that he is. I often can’t remember him before he fractured. But every now and then, little pieces of him surface for a brief shining moment, and then he goes back.
My Terran has always been charismatic. She has always been inquisitive. She knows me so well. She knows when I am afraid, sad, angry, or just plain at a loss. She knows that I love to laugh, but there are moments when we must be serious, silly can come later. She is my biggest helper though. A lot of the things during the day would not get done were it not for her and her ability to pick up the ball and run with it. She is a very special jewel. I can remember last school year; the teacher gave the kids in her fourth grade class a writing assignment. I picked up this writing assignment on this particular day and it was about her brother. The last sentence struck a chord in my soul, “My brother is great and will go to college one day.” Wow, at nine, she could see what many others can’t.
My Libby Lee, oh my Oh my, what can I say about my little monkey. She is so much of me it is funny. If I were to think back to my mischievous days, I would remember being Libby. I never was much of a climber, but she can scale anything. She is awesome when it comes to climbing and flipping off of things. She scares me but she owns no fear. I wish that was a lesson that I could take from her, owning no fear. Libby was diagnosed as being on the Autism Spectrum in March. She is not autistic; she has PDD-NOS, Persuasive Developmental Disorder-None Other Specified. What that means, she has autistic traits and tendencies but she has symptoms of three of the other disorders under the PDD umbrella. She is super smart, but social skills, not so good. She knows that she is supposed to play with a child her size, but she thinks to get their attention that she is supposed to fight them. She has not developed that skill that says, “Do you want to play?”
Those are my children, Monday through Thursday; my day is full of running. We might get home for an hour before we are off to the next appointment. I sometimes don’t see home for hours and hours, I’m off for the summer, when do I vacation? I have to take them to OT, Speech, Pick him up from school, drop her off at camp and pick her up. ABA, More OT, more speech….work on reading with T.J., work on colors with Libby, yell at Terran to finish that library book that she has had forever and is due tomorrow while she pretends to clean her room, have you seen her closet? Cooking breakfast, lunch, and dinner, two snacks, twelve loads of laundry, my snacking, drinking three bottles or more of water, vacuuming, my room is a sty, working with Optima, working with Family Connection of South Carolina, letter writing campaigns, telling educators that they need to be more sensitive, secretly saying to myself that they are dumb, fixing a race car, combing a dolls hair, my hair is a mess, painting toe nails, mine need some attention, ironing outfit after outfit, did I forget to shower? Two hours sleep, up at three, two more hours of sleep before time for me to get up the boy and get him dressed, therapy, school, therapy, camp, therapy, more therapy. BBQ chips, a Coke, a Pepsi, a Mt. Dew, pecans, ice cream, STARBUCKS, email, budget whoas, counting pennies, child support, SSI, Pediatricians, Columbia, Charleston, Charlotte, TACA, support groups, Family Partner, Family Support Funds, Support Parents, dentist, whose turn is it? Chicken, broccoli, rice, corn, chicken, broccoli, rice, corn, okay T.J. I’ll fix you broccoli, rice, and corn, T.J.’s probiotics make him gag and throw up and no he won't eat beans, time to try something new and yes, I still have my hair.
Sounds like a lot, throw in a dysfunctional family, an ex husband, a boyfriend in Mississippi, and the crazy people I work with day in and day out during the school year, I think I deserve a break for at least five minutes a day. The purpose of this rant though is to say that without chaos, the chaos that I am used to, I would not know what to do with myself. I cannot remember the days when I only had one child. Those days are so far gone. I cannot remember the days when I had two, to me, it seems like there have always been three. I sit and I wonder though, how does the lady with six kids on the spectrum survive? Is she on a good cocktail of meds that allow her to do what she has to do? I wonder if she and dad drink at night when the kids are in bed. How do they deal with their runners? I have two and I wonder sometimes am I doing the right thing by them and when they say “Look mom” and do something age appropriate, I see that I am. In the life of disability, you become the mom of T.J. and Libby. That is your new identity. Then you have the days that you just want to run like he runs when he gets free.
As Stevie plays, I know that it’s time for me to bring this to a close. He sings “Always”, I will love my babies always. “Did you know that true love ask for nothing” he belts, our kids ask for nothing more than love. “I’ll be loving you always” he says, this song is on at the same time every night on Pandora so I kinda got the words to a certain point. We love our kids even when we get old and gray and do not agree with the choices they make in their lives. I just pray that my three get older, go to school, get educations, and get jobs and maintain their lives as productive members of society.
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