Thursday, August 27, 2009

Autism 101 By KU

Often times we have our best conversations in the car so tonight while KU and I had a night out I decided to broach the subject of autism. Our conversation went like this:

Me: Hey, KU have you ever heard the word autism?

K: I'm not sure but I think so.

I pause wondering if I should go on

K: So what is it?

Me: Well, it is something that some people have. Sometimes a person with autism hears noises louder than other people. LIke they might hear the refrigerator sound very loud whereas most people can not really hear it. Or sometimes for someone with autism lights seem very bright. Sometimes people with autism find it hard to be touched or they are really ticklish. Do you want me to go on?

KU: Okay.

Me: Sometimes people who have autism find it hard to look other people in the eyes when they are talking to them and sometimes it is very hard for them to sit still. For some people with autism the tags in their shirts make them itchy. Sometimes it is hard for them to talk to other people. But people with autism are usually very smart and often they see things in ways that other people don't which makes them good artists or good with computers or good playing a musical instrument. Their brains just work a little differently than many people, but hey, everyone is different. Some people have brown hair, some people need a wheelchair to get around. Having autism is just like being a boy or being Korean or having blue or brown eyes. It is just a part of who a person is but not the whole person. Do you have any questions?

KU:" Mom, do you have autism cause if you do, I still love you just the way you are!"

Tuesday, August 25, 2009


My sister is my only sibling. We were never particularly close as kids. I think illness separates you in that way. One child wishing she was healthy like the carefree one... while the healthy one wishes she was getting all the attention the sick one is receiving. Neither sib wins in a relationship like this.

When my sister was seven years old her pediatrician gave her too large of a dosage of medicine which killed her kidneys. She had seizures, fevers and lost most of her body weight. I still remember the time my parents snuck me in the hospital to see her and all I could see was a skeleton of skin and bones. I shook on the inside from fear, rattling every internal organ to the core. I wanted to shake on the outside but couldn't let my sister see the effect that she had on me. I was only eight but I knew that the fear I was feeling was just something I had to hide from everyone, especially myself. And so I did as if my life depended on it and I never looked back until many years later. By then it was too late. Our relationship would never be what it could have been. Lies/fear stunt its growth.

I also remember the shunt that stuck out of my sisters arm like a curving snake slithering into her arm and disappearing within the two holes that looked red, raw and perpetually oozy. It was her lifeline to a washing machine sized dialysis unit that kept her alive. Back then I gather that it was a somewhat hazardous process. In fact, I remember listening to my parents whisper about someone who had died while connected. I know I went and saw my sister once when she was undergoing treatment and once again I was shook to my core. When I was older I blamed my parents from not being honest about what was happening, from shielding me from all the unpleasantness which created an unpleasant scariness of its own. But now I wonder what they saw when they were looking at me looking at her. Perhaps they were doing me a favor after all.

Anyway, when my sister was eight my mother donated a kidney to my sister. To this day I still don't know if it was her left or her right. I just remember seeing her with stitches going from her front to her back and wondered if she would have been willing to be in all that pain for me for by then I felt so outside of the loop of what we call family. Guilt, fear and pain melded together to create a child who was there on the outside but was long gone on the inside. Always comparing and always coming up short. Funny thing the same thing was going on with my sister yet we really never knew until we were older how much this effected our lives. Time passed. My mother did too. Her gift still living within my sister for a total of 28 years. Then it was my turn to donate something I wanted to do in hopes of somehow evening out our lives and what had become of them. A hope of salvation and redemption for both of us. My husband wasn't so sure. My sister was having mental health issues at the time and he was afraid that she may decided to stop the drugs that would keep her alive. As it turned out a few years later she did just that. When I found out there was only one thing I could say "I gave you a gift and only you can decide what to do with that gift and whatever you decide I will support you." That one sentence spoken from the heart evened out the playing field in my sisters mind. The indebtedness to someone she felt so conflicted about disappeared and we slowly began to repair our relationship. Now ten years later her kidney is once again failing and there is no family to look towards for donation. She refuses to ask her children after spending years worrying about my health and the guilt she would feel if I were to get ill. She is adamant about keeping loved ones out of the process. And so we sit and wait...the clock slowly ticking... to see how long it will take before she needs to go back on dialysis...if she ever chooses to.

Recently, it has come to my attention that my sister may want to forego further medical intervention. For it has come up here and there that heading down that path which leads to a dangerous and confusing medical precipious might not be the one she will decide to take. My father and I were discussing the ramifications of this the other day. My father said that he would support her right to make this choice and would do whatever it took to make sure this choice remained open to her by zealots who might try and implement their religious ideals upon her. However, he said that as much as he would help make sure that these options remained open to her as his daughter it was very painful to think about her deciding that she did not want to walk the path along the dialysis line. And as he said it I replied, "Why because she hadn't suffered enough?"

Why is it, I wondered, that for most of us it appears that there is a certain amount of time that we feel someone must suffer before we can let them go? It's one thing if a freak accident of nature renders our loved one brain dead. For these types of situations most of us can let go saying with all sincerity "they didn't want to live that way. They didn't want to suffer." But let a person decide on their own that they want to opt out of life preserving treatment and for some reason it becomes more difficult to view it in that manner. Somehow when a person makes the decision to die by forgoing treatment it becomes in our minds something akin to suicide and we just can't tolerate that. Instead, we ask that they suffer. Suffer the pain and humility of treatments that render them helpless, hopeless and often in incredible pain. Then and only then do we see their suffering as worthy of death.

I am not sure where we Americans picked up the notion that suffering is admirable, enlightening or an event that provides an opportunity for one to discover a virtue that may have been hidden throughout ones life only to rise up at the end like a butterfly emerging from its cocoon. Why is it so unpalatable to just say no to prolonging the inevitable? At what point does suffering cease to have any meaning? Is it when a person is so drugged up on morphine that they can no longer contemplate their fate or revisit the good and the bad they have caused and its implications? Or does suffering have any true meaning at all? Is it all for show or does it in fact provide the wisdom necessary to complete one's journey?


Conversation in the Car

I always love our conversations in the car where the truth appears swiftly whether I like it or not.

We are going to the boy's therapist and this conversation occurs

Me: I think I want to play with Dr. Sullivan today.
Karson: I don't think so mom. She only plays with people my size. You're too fat.
Me: Well thanks Karson but I think she would play with me
Karson: Mom, I go there to play but also to tell her about my life. LIke what I did in San Francisco. Stuff like that. If you want to play with someone you have to get your OWN therapist, not mine. Maybe you could talk to Amy. You like Amy and she likes you. You could both talk about your lives and play together too. I think she is a Candy Land type of girl.

Wednesday, August 5, 2009

Conversation Heard In My House Today

KU: Dad, what are these lumps below my dink
Dad: Those are called your testicles
KU: Can they explode if you squeeze them?
Dad: Well it can hurt, son. I don't recommend it.

5 minutes later said son walks into our room visably upset

KU: Dad, I am really freaked out now.
Dad: What about?
KU: (with tears in his eyes) Well I squeezed them really hard. I think they are going to pop. What happens when they pop? Do they explode and disappear? Will I die?
Dad: It's okay son. You won't die but it might really hurt later on. I think it would be a good thing to let them rest now and stop squeezing them.

5 minutes later KA can be heard asking KU

KA: What are you talking about?
KU: They are your tentacles. They are those hard things inside your dink. But don't squeeze your tentacles it can make you turn blue.

Tuesday, August 4, 2009

When Momma's Unhappy

You know the old saying, "If Momma ain't happy then no one is happy" well that's an understatement if I have ever heard one!!!

Life with two autistic boys can be a bit of a challenge. Instead of one behavior issue there are often two running concurrently and in opposite directions. Sometimes it is enough to drive you to the brink of insanity. Fortunately, a hand always appears out of the mist to pull me back off the ledge because "someone" knows there isn't anyone else around to do the job I do. Mothering is often a thankless task and "SHE" knows it. Today was one of those thankless days. Dave knew it was "one of THOSE days" because when I arrived home at 7 p.m. with the kids I looked at him and said, "You have to take this child or I am going to commit a crime against humanity!!!." And with that I walked back out the door and went to indulge in a little retail therapy ALONE. One thing a mother of autistic children does NOT want to do is take them to the store with her. (Refer back to the mannequin incident involving a pulled up shirt and hands on the oh-so-perfect and perky breasts that some man having a wet dream must have designed.) This is only one reason I avoid stores at all costs when I have children in tow.

Another way I know its been a stressful day is when I am on a diet and I go ahead and buy a container of cookies. Call it tempting fate or Russian Roulette it doesn't matter when It's my favorite. Ummm, chocolate almond biscotti with it's s-o-o-t-h-i-n-g butter taste and the melt-in-your-mouth sweetness of the crushed almonds which cling to my tongue while the chocolate coating swirls around my mouth like a robust cognac. Unfortunately, all of this silky sweetness of serves to jump start my taste buds into action after a week of bland green food. Of course it is easy to justify said purchase. I usually do it by playing some form of the numbers game which goes something like this: "I will only have three cookies. Yep, just three. They only have 120 cal, 8 carbs which means I will eat salad for breakfast for the next week to compensate." Of course, before I even finish the thought and brush the crumbs from my lips the number of carbs and calories consumed have become so gargantuan that I can no longer do the math without a scientific calculator!

You also know it's a "Momma Ain't Happy Day" when you keep repeating back to yourself the simple reminder that you love your child and he cannot help himself no matter how much medication you or said child is on. Usually by employing this strategy I can convince myself that if I say it over and over again I will remember it and remain astonishingly calm the next time my child is on a mission to put me in the loony bin before his 8th birthday. Yet, if you are like me, repeating this mantra for the two thousandth time tends to put you in a trance. Tonight it happened in the store's dressing room and it wasn't until I arrived home that I realized the dress I purchased is in the most Gosh-awful shade of coral (who looks good in coral anyway?) and is three sizes too small. And because I will be leaving for a wedding tomorrow it means I must return the dress and take the kids into the store with me; thereby negating any therapy I might have gotten from the original excursion. Just the thought of taking said children to the store then gives me the shakes which ultimately leads to a third shot of vodka for the night. The result of being that I will most likely have a hangover the size of Texas tomorrow morning; once again proving the old adage that if Momma's unhappy...well you know the rest.

Monday, August 3, 2009

Sometimes Life Just Sucks...Other Times It Doesn't

What is it about crashes? Why is that ones that will ultimately be expensive sound one way while those that involve a $3 cheap trinket from China sound another. It is like the cheap ones have no oomph whereas the valuable/expensive ones shatter with a delayed sense of time so you can hear each atom splitting apart from one another in slow motion; like a chemistry experiment gone horribly wrong.

Crashes also for some odd reason sound different from one another based on whether the crash was intentional or not. For instance, when I was just a wee child of about age two my mother was having a fancy dinner party and borrowed china from all her friends and relatives. Being the helpful little lady I was I decided to vacuum for my mother. Now I am sure that when my mother heard the vacuum going she looked at my father quizzically and then they both made a dash for the dining room. But it was too late. For as they raced down the stairs I somehow managed to wrap the hose around the dining room table and pull the entire thing over. Crash. I suspect that it wasn't one big crash but the tinkle of each dish bouncing off one another as they cracked and chipped and went their own separate ways. That's the way of the "I shouldn't have borrowed so much" crash. It not only splinters your dishes but it also splinters your mind into a thousand little pieces trying to figure out how you are going to tell all those wonderful folks who lent you all that beautiful dish ware that their prize pieces are now sitting in the trash can along with the onion dip and the sweet gerkins.

Unfortunately, the crash I heard last weekend was a deliberate one. It was a crash created in moment of anger like a scorching red branding iron that is doused in water; so steaming and hot; it hissed louder than 100 angry hornets. A crash that was the result of two weeks without pharmaceuticals in the bloodstream and two minutes after a child was sentenced to some time alone. NO greater injustice could have been handed down upon a seven year old. And after a minute in which the blood was boiling so rapidly that the temperature of the brain went so high that it no longer functioned as it was designed to, a pool ball was shot through the window, shattering it into a million pieces right along with my soul. It was loud, angry and each shard of glass was jagged, twisted and capable of inflicting severe injury and pain. Glass that hid out of sight, like a private eye with his hand on the shutter, just waiting to open and expose the skin of a stranger to the anguished other. A crash so unexpected that one is now left to wonder if it is just the beginning or truly an anomaly but either way nothing will be quite the same again.

Then there was the crash of this past weekend. I was not there to witness it nor hear it but I am told that it was the sound a bowling ball makes when it captures a perfect STRIKE. A thud so deep that it resonates throughout the alley. In this case it was one of our old oak trees that guard the driveway to the cabin between the rocks that will catch a tire and the propane tank that lights our fire. Seems that for whatever reason this old oak split itself down the middle; the left half falling into the road while the right half fell into another old oak who strains to cradle it within its own feeble branches without falling over itself as it carries double its usual load. And should the oak lose its fight both will most likely crash into the cabin splintering everything from the roof to the foundation and carrying with it the dreams of past and current caretakers all in one fell swoop. Crash, Bang. It's gone never to be revived again unless, of course, you carry a good low deductable on your insurance policy .

I have heard the question asked that if a tree falls in a forest and there is no one around to hear it, does it in fact make a sound? After this weekend I finally have the answer to this perplexing question and quite frankly; it all depends on if you have good insurance with some sort of policy that covers dangerous trees. Seems that my insurance will not pay to have the two trees that MAY crash on my cabin removed. They will, however, pay to rebuild the cabin should the trees decide to fall upon it. CRASH...and I wonder why my premiums are going up!