"...love adeptly and creatively applied, love consistently and abidingly offered, love wisely and enthusiastically held out and always felt, even when you're sad, angry, disappointed, or hopelss. Such love is muscular and magical. It stares adversity straight in the eye and never once blinks. It prevails." Edward M. Hallowell.
I've watched Isaac over the last couple weeks progress, regress, gain ground and loose ground, blow up, cry, play, and scream. I know he's got to be exhausted. The rest of the family is. There has been no rest, no break, no time to breath. If it wasn't some horrible disaster happening in or to our home, we had Isaac, a mass of nerves and emotion causing his own whirlwind of destruction.
I get the most frustrated when I hear people look at my kids and exclaim how they could never have guessed they had autism. This is coming from people that have not visited me in my home, seen our daily lives revolve around one chaotic episode after another, or spent any amount of time learning about our life. Most definately, there are worse off autistic children than what I have. I still run into people who define autism from what they saw on the movie "Rainman". Because my children don't LOOK different from others, they assume life is normal, that I am a bad parent when my kid melts down in the checkout line, or that "that kid just needs a good spank".
What people don't see is the violent outbursts that erupt over a preferred cup at the dinner table, or a rush to check the mail, or being asked to help with a chore. They don't experience the frustration from asking them to do a task as simple as "pour water for dinner" and they have to be reminded over and over and over, until we give up and asking another to do the task. They don't understand the guilt that is fueled by the instinctive comparisson of the autistic child to his normal siblings. They don't understand the desire to love this child as a whole, to understand this child, and to believe in this child, when this is undermined by a destroyed house, exaggerations about an incident, and the blaring obviousness that he cannot perform certain tasks that you think because of his age, he should be able to do.
His learning disabilities make it difficult to move forward with education. We chose to homeschool because the stress caused with him in school was far more disruptive to our home than when he was he was home. Some may find that hard to believe. Many tell me to put him in school so I can get a break. They don't understand what a temptation that is for me. Just as I build up my resolve, this comes and brings it all down. Isaac's ability to learn is through hands on, lots of activity, lots of short lessons and free time. This isn't exactly the way of "normal" school. Conveyor belt schooling will simply not ever be easy for Isaac, at least not in the formative years.
While there are social and physcial limitations he experiences, there are emotional limitations. He knows he is different. He worries about his disabilities and that they affect his relationships. Poor guy cannot understand the fickleness of preteen girls now, that one day they are friends and the next day they are enemies. He wants things to be the same every time, every day, and while some things he can be flexible about, like a quick trip to the store, he can't adapt easily to out of town visits, moves, or interruptions to his play. He hates being yelled at, but sadly, after our frustrations have grown all day long with him, we resort to yelling, which only makes things worse. I know he tries to do the right things, he wants to the right things, but just...can't.
If you watch him, you instantly tense. His muscles are tense all day long. His arms and legs stick out at boney angels. When you touch him, he stiffens even more, as if that is possible. He can't control his body well, so his movements become jerky and fast. It is hard to watch my other children work so hard on a project, and Isaac will accidentally hit something, jerk something, move something and mess up their project. Sometimes it seems intentional, other times it is accidental, but the cries from the siblings say otherwise. It is their frustration at being run over, hurt, sidelined or put out by Isaac.
For the postives in our family, we live for the good moments. A joke that Isaac finally gets right, potty training success, a bright smile, a job done, a note he draws for us, his "instant buddy" status, his nosiness. I admire his ability to have no fear in meeting new people. He's the first one out the door in a new neighborhood to meet new friends, which I suppose people would say is odd for an autistic kid that is supposed to have slow social skills. It is not the meeting people that is difficult for him, but his keeping friends. I can't get him to read much of anything, but he will read anything about dogs. I love that all animals instantly bond with him. I'm amazed at his unfazing energy.
I disagree with Jenny McCarthy's claim that autism is curable. I believe that there can be improvements, but having known some autistic adults, some of those disabilities never leave. We all don't have access and money to the autism programs for behavior, the autistic schools, the dietary supplements or special diets (although I do know that diet attributes to improvements), insurance for counseling, insurance for medicines, or just the testing for autism. When the school tested Isaac for his secondary disabilities (visual problems, motor issues), they didn't really have anything in place that would help with these issues, only the ability to test for the issues. What are parents like me left with? Love. Love for a child that may never be whole. Love for a child that is imperfect. Love for a memory of a short blond angel with a crooked halo. Love for a child that can be so consuming it hurts. I live off of other parents stories so I can find some kind of common ground, knowing I'm not the only one experiencing this trial.
To understand more on autism, go to this site:
http://www.autism-help.org/