When a child is first diagnosed with autism, it can feel as though the entire family has been thrust into some bizarre, different world. Some parents immediately begin the grieving process, even to the point of imagining their adult child in an institution setting. Others focus on what they can do to "fix it". Medications, interventions, dietary changes, and other treatments are researched at length in order to give their child the best possible chance to be successful in the world. It can be overwhelming. Child A did particularly well when this substance was removed from his diet, the mother of child B said the diet didn't do anything for her child but certain medications worked quite well. Most every medical, homeopathic, psychiatric, or medicinal approach can be summed up in the old saying "some swear by it, some swear at it". It can feel like no matter what you do, you are going to be wrong and flunk Parenting 101.
Living with autism has changed how I see the world. My daughter, Sabrina, is fourteen years old, and has severe autism. She drops to the ground and bangs her head on the floor. She lets loose with a blood curdling scream with little or no warning. It has only been within the last two years that she has achieved reasonable toileting success. I have spent the last ten years pointing out to complete strangers that the handicapped accessible stall is there for a reason and enjoying a little extra room isn't one of them. To be clear, I don't mean people with small children, or others that might possibly have a valid reason. After all, not all disabilities are immediately apparant. I'm talking about being virtually shoved to the side in some kind of insane territorial race to "the big stall" by someone obviously in good health, ending in my trying to cram two adult sized people into one tiny stall since my daughter continues to need assistance. Losing the "big stall dash" is frustrating now, but at least I rarely have to attempt public diaper changes these days.
Sabrina is mostly non-verbal, as well. She's learned to use a picture system for communication, and does fairly well with it. When we carry her book full of symbols out in public, it tends to attract strange looks. Sometimes I'm convinced that while my daughter may have a co-diagnosis of mental retardation, "normal" people have more difficulty with new things. What is so confusing about someone handing you a pieced together sentence that clearly states "I want french fries, please", complete with words and pictures? Granted, it's not something most people encounter on a daily basis, but it's not rocket science. Then again, there is nothing unusual or uncommon about it. It's just life.
My son, Alex, is eleven years old and has what is considered high functioning autism. He's not very far behind his peers either academically or socially. His days are spent primarily in a regular education classroom, as opposed to special education. He loves toy cars and comics, like most of the other kids. He's a computer whiz, reads very well, and he has one exceptionally good friend who accepts him unconditionally and makes sure no-one takes advantage of him. Junior high school is ahead for next year, and that scares me to death. You would think most of my worry would be focused on Sabrina, wouldn't you? Sometimes it is, but there are times that knowing she will need a lifetime of care relieves worries rather than creates them. She doesn't care about dating, driving, or popularity. She just wants to play on the swings, get a hug from Mom or Dad, maybe play "tickle" with her sister. Alex is already talking about getting his drivers license, but I don't know if he'll have the temperament or attention span to do so. Choosing not to look too far ahead is yet another way living with autism has affected my life.
Living with autism teaches you to hold your head up no matter how much people gawk. It means changing your method of measurement from "all the other kids are doing this" to "look how far we've come since this began". Sometimes it means screaming out to the universe that you didn't sign up for this, you're not strong enough, and it's not fair and sometimes it's saying thank you for being allowed to learn that your daughter looking at you with nothing but love in her eyes makes up for her lack of speech. Living with autism means deciding what's worth worrying about today, and what can wait until tomorrow. It's trying not to cry when your son wants to know why someone called him "retard", and shedding tears of joy when he makes a real friend. It's patience, frustration, and exhaustion. It's celebration, despair, and learning that nothing in this life should be taken for granted. It's unconditional love and acceptance. Living with autism is our lives and, believe it or not, I'm thankful.