When Zaya was born in August of 1991 I knew something wasn't right. Call it Mother's intuition, gut feeling or whatever you want. But in this case, I heard a voice as if whispering in my ear as they handed me my lil bundle of joy after delivery..and that voice said, "That's not Jonathan. Prepare yourself." I had chosen the name Jonathan Robert, since "my gut" told me I was having a boy roughly 4 months into my pregnancy. I was bewildered by the voice whispering to me, not so much because it happened, but because I had no clue what it meant by "prepare".. and of course it's "Jonathan".. that's what I named him before he was even born. I was wrong. When they handed him to me all bruised from laying on my pelvic bone for the last 3 months. I repeated out loud what the voice had said. "This is not Jonathan". Everyone looked at me as if I'd lost my mind. My Mother said, "What?" I repeated it. She said, "You're tired." I said "No, I'm not. He's not Jonathan." Was no reason for me to be tired..lol I know you don't often hear that about someone who's just given birth, but I got Lucky and had a whopping hour and 20 minutes of labor..with NO pain. I may not know who this child was that just busted his way onto the seen..literally. but I do know he was in a big hurry to get out. I laughed at the time and said,"It's a good thing that most women have painful labor, if it was this easy all the time, the world would really be over populated." "Easy" wasn't the word I was using as my baby boy who I offically named. Isaiah Christian, didn't behave as my other child did. At the time I called it "odd", convinced myself that I had just 'forgotten' since my children are 10 years apart. But with every new "odd' thing that showed up,the bothersome nagging of "that's not right" was in the back of my mind. Newborn babies, sleep,eat,burp,spit up, pee,poop and cry about it. My new baby, didn't sleep very long at a time. If I was lucky, he'd stay asleep for longer then 20 minutes at a time. He didn't sleep thru Thunderstorms, changing his clothes, or diapers, he startled and cried thru them. If you could call it a cry, He's cry was so soft I often wouldn't hear him, if I was in the next room. Our dog Katie was our baby monitor. I think she knew something was different too. She was on constant alert. She'd run into the bedroom and check on him.. if she came out whining and barking at me, I knew he was awake and crying in his soft lil voice. She didn't like us taking him out of the house, unless she could go out too. She didn't behave that way with the other kids, not even when they were old enough to play with her. Isaiah, Zaya for short, Didn't lack in physical development, in fact he rolled over at 2 months. Again Katie saved him. I was changing his crib sheet and had laid him on the middle of our bed. Suddenly she was whining frantically.. I told her to hush at first I was right there and he wasn't crying. But she persisted. I turned to find he had not only rolled over but had wiggled himself to the edge. Katie had her wet nose on the top of his head, Holding him on the bed the best she could without hands.lol He didn't crawl tho, rather he had one knee and one foot on the floor in a half walk half crawl type of motion. Things weren't bad at that point just "different". I couldn't find a happy medium for awhile with his formula. The concentrate seems to give him constipation, the powder, gave him diaherria. I finally resorted to the more expensive 'ready-to-feed". When he began eating cereal, he was having no part of that. He'd gag, shutter and spit it out as fast as he could, no matter how much I thinned it out with more formula. I resorted to mixing fruit with it, then he'd accept it. He seemed to have a very picky appetite, wouldn't let peas stay in his mouth for more then a second, as he got older and started to eat "big people" food. We'd looked forward to letting him have mashed potatoes and gravy, nothing doing. He spit it out and refused it time and time again. I was really excited when he started babbling, at 9 months, he would say "ba"..when reaching for his bottle, "Da" when lookin at Katie. Which I took as 'Bottle' and 'dog'. Then at 10 months all that suddenly stopped. He no longer attempted to say anything. A "Hum" and jibberish type noise took his words place. Followed by LOUD tantrums and throwing himself down on whatever surface he was on and banging his head repeatedly against the ground, floor, or driveway. He didn't look at us anymore when we talked to him or called his name. He'd pull at his clothes and cry if it was anything but a cotton jersey knit, He started making an"unnnnnhh" noise, a hum of sorts, and squinting his eyes and flapping his hands when excited or upset. I took him to our doctor, he didn't find anything, referred us to an audiologist, for testing. we were told that, he might be deaf, maybe as the result of many ear infections. They didn't think it was severe, from the tests the ran. Told me to bring him back in six months. I frankly was mad, frustrated, I knew he wasn't deaf. He'd watch tv, and if you were at the right angle you could see him look briefly from the corner of his eye when you called his name, or some other noise occurred. I asked to be referred to another doctor. And then Another before a nurse said "Have you had him checked for Autism?" The doctor poo-pooed that notion. Told me not to worry, he was healthy and would most likely pass out of this stage. I called the university hospital and asked them about Austism, They of course had heard of it, but didn't know of anyway to test for it. Suggested I see the socialogist, and behaviorist, and gave me a phone number. Two years, and both legs bruised from cushioning his head from the floor during his tantrums I finally had the diagnosis. Autism. At first I was kinda numb.. but then I thought.."I told youuu something wasn't right!" Everyone acted as if I was some overreacting parent. Some said "he's spoiled, Spank his ass that'll straighten him out."..Now after two years, these same people who were accusing me of overreacting were telling me to put him in an institution, medicate him. I refused. And started seeked help.. back to University Hospital. They were waiting to start an early childhood Austim Team, had started it actually but had put it into action yet. While working with them we set Isaiah up to start School that fall at the age of three. The first year sucked.. the teacher they had hired to run this program. Was a harsh, task master-type. Who Insisted we not interfer and let her decide everything. We were to follow her exact instructions, and Force him to interact and to behave like a "normal" child would. She was fired mid-year.. noone would give us the details, but I was very happy with that decision. The next year they moved the school closer to our home, in a regular school house, with the Autism team hands on, teaching both me and the preschool teacher what to do, and how to teach him. Starting with sign language and picture boards. Was another two years, at age five I finally got to hear my baby call me Momma. Talk about tears..laughter and the feeling of flying. :) Slowly, much more kinder, then his first teacher, we made progress. I won't lie to you, there were many many times I said "I can't do this, anymore" two steps forward one step back. three forward, three back. it was a challenge and different results almost daily. His conferences involved 6-8 people, twice a year, usually an hour or more each time, rather then just me and a teacher for fifteen minutes. Disipline,(spellcheck lol) humor..LOTS of humor.. reading everything we could and stubborness all around got us to where we are today. At fifteen, he is now in general education classes, along with his para-pro,"His shadow"..A happy altho sometimes trying 8th grader. Is he cured? No, far from cured. But he converses with us, can tell us how he is feeling..if he decides to. And his grades are higher then mine were in eighth grade. He even took home ec and shop this year. Don't give up hope. Never give up hope!. I don't know at this point and time if he'll ever be able to hold a job, or live on his own. But there is no telling just how far he can go, or what he maybe capable of in the future. He may never eat potatoes..but I'll take the progress he's made over him being easy to cook for anyday.:) Like the butterflies, with help our children can emerge from their cocoons. As a matter of fact, I think the symbol for Austim Awareness should be a butterfly, altho the puzzle piece is very fitting, I feel it's somewhat negative, as parents of an austic child, we are well aware of how puzzling it is. The butterfly however, to me is more like a symbol of hope.
Resources for family with Autistic Children & Adults
April is Autism Awareness Month
Message board, talk to other parents and families
Links to info, resources, and organizations
More resources and info
And still more...too many to list them all here :)
