How Autism Changed ME: April 2014

Monday, April 21, 2014

My Closed Door Policy

Young children require constant supervision, if not for their own protection but for your piece of mind. And so it is with raising my autistic 16 year old son. As with all children, if things get quiet then something is wrong. When I am with Tanner I rely on certain types of noises. His "sounds" assure me that he is safe. So if I hear the same scene of The Simpsons playing over and over I am confident that the boy is within remote control distance of the TV (which is good). If it is silent there is a guarantee that the boy is looking for trouble (which is bad). That trouble usually shows itself as an open door. Open doors of any kind are bad news. An open freezer means that Tanner has taken the ice cream and is presently scooping it out with his fingers and painting the couch with it. An open bathroom door and the sound of water running means that the boy is intent on overflowing the bathtub as he gets in fully clothed. If a bedroom door is open I can count on Tanner sitting in the middle of my bed, throwing my pillows around, messing with my blinds and dumping out my antacid tablets. The sphincter clenching moment is when I discover an open door to the outside world. In this case it's not only an inconvenience it's a jolt to my nerves. Most often I catch him fast walking down the sidewalk in hot pursuit of a neighbor's unlocked/open garage door. Any open door might as well have a sign which says "Come on in, Tanner!" Because that is just what he does. Nothing pleases the boy more than to find what is on the other side of a door.
So if you come over to my house don't be surprised if it takes me a while to let you in. I will be untying and unhooking and unbolting the door, and I might even say "welcome to my prison".Also remember to bring a toothpick in case you need the restroom. A toothpick will get you into all the special rooms in the house. If you need a drink of water you'll need to untie the ribbon around the faucet, if you want a snack count on unlatching the cupboard. Everybody is welcome to come over just lock the door behind you.

Saturday, April 5, 2014

The Big Dipper

    There is a good reason why my Autistic son drinks from a sippy cup. It's not that he is incapable of drinking from a "big boy" cup, it's just that an open cup with fluid in it becomes a big temptation to cause huge messes.Of course there is the uncontrollable draw towards dumping the drink into his dinner, or the delight in methodically pouring the drink onto the floor. Another reason for a closed cup is that Tanner is a dipper. If at all possible, he will dip whatever he is eating into something liquid. A sandwich will be dipped into a cup of milk or water, the same goes for a taco or meatloaf or scrambled eggs. It's gross! Imagine dipping your salad in your Diet Coke before you eat it. I try to provide a side of dipping sauce, like ranch dressing or ketchup, with his meals but inevitably he grabs MY drink and dunks his spaghetti into it.
    At times I question why the boy likes mushy bread or soaked fish sticks or dunked pizza. By all means he will eat anything, including non-edibles like candles, chalk and dirt clods, so why does he have to make good food so gross? I don't know....But I DO know that if I leave scraps in the sink, like crusts, tomato butts, potato peelings, Tanner will scoop them up and chow down.
    So for lunch today I will prepare whatever he picks out and I won't forget the ketchup...so he can dip his grapes.

In The Beginning

Once upon a time I was timid and indecisive. Once upon a time I was needy and insecure. This luxury started to change when I had my first baby, my abnormal baby. He was a perfectly wonderful baby to me. He nursed well, he got fat and smiled and played. Except he was to relaxed and content. He didn't move much, didn't hold his head steady and didn't make much noise; true dream for a new mom. I remember how I held him, how he melted into my arms. He never tried to wriggle out of my grasp. Later, I would watch him miss milestone after milestone. They called him floppy, hypotonic and "a touch dysmorphic". They were worried about my boy's development. So after seeing specialists who provided me with lots of meaningless well rehearsed uncertainty; and thereby receiving absolutely no workable information toward a diagnosis or plan, I left with a twinge of hope but mostly despair. I wouldn't find answers unless I diagnosed him myself. I would research until my hands fell off.

Milestones and Diagnosis

Milestones are those special developmental events which occur when your child starts climbing the ladder to success. Milestones are the"firsts" that moms get so excited about. My boy's first independent steps were at age 5 so you can imagine that even the basic accomplishments were long in coming: sitting unassisted at 10 months, crawling at 2yrs, speaking at....never. During the early years of research and development I got a diagnosis of FG Syndrome, an x-linked chromosomal condition. My son fits most of the physical and mental characteristics but can't be tested definitively because this syndrome hasn't been mapped yet. At the time I clung to this diagnosis because there was such a wonderful support group who could answer my questions. By the time he was 6 years old I was getting the raised eyebrows of specialists when I mentioned FG Syndrome because of their unfamiliarity with it. Later I became content with the diagnosis of AUTISM with a possible unknown genetic component which accounts for his "look". ie. small chin, prominent forehead, downward sloping eyes, hypotonia.

Fifteen Years Later

I have lived with a low functioning autistic child forever it seems. I have seen my boy grow from an infant to a 120 lb teen. I have changed from being a passive soul to being a strong soul. Before autism I was directionless, after autism I have lived every single day with profound purpose and significance.He has been such a joy to me and such a frustration. There were years of astonishingly violent tantrums accompanied with moments of joyous affection. I learned to accept help. I learned to be patient.Most of all I have experienced the incredible gift of unconditional love. I am living a full existence by giving up. I have given up trying to be the perfect mom. I have given up trying to control my life and his life. We are out of control but we don't care.