It’s amazing the power of a word. One year ago today (August 25) the word “autism” was breathed for the first time in our home. It hung in the air like a dense fog that took my breath away. I will never forget the scene… we had just put Josiah to bed and we returned to the kitchen table to visit with my husband’s mom and dad who had arrived a few hours earlier from North Dakota. They came out just a week after they had been out here to “get some car repairs” (but I think that was just the excuse to come back to talk with us face to face). We were laughing and telling stories when, suddenly, the tone changed.
Joe’s dad, courageously and graciously, told us that they didn’t want to alarm us but they just wanted us to promise them that we’d get this checked out. “It will all probably turn out fine,” he said. This feeling of flushing when through my body–like when the phone rings in the middle of the night. I wondered, “What could possibly be wrong?” He continued, “We think something’s not quite right with Josiah. Compared to when we were here a couple of months ago, he didn’t seem to be as interested in us or in his cousin, and we had noticed little things before like how he was into wheels, was turning lights off and on, and was looking strangely at the fence… He hit his head on the floor last week and it didn’t even hurt him.”
THE “A” WORD
I remember my husband saying, “You mean you think it’s like autism?” Mom and Dad shook their heads.
“But, he claps and he has eye contact, and he’s not like that,” I said. “That’s a horrible sentence for life.” What I knew of autism was minimal, but like most moms, when the Parents magazine would come out I read about watching for the signs of autism, and I sure was glad my kid didn’t fit the criteria. And, I remembered when Josiah was just months old challenging his pediatrician wondering if he really needed all of these vaccines… what about what I read about autism? Well, the doc gave the pat answer, “Vaccines have save thousands of lives and any side effects are very rare.” So, I went forward with the vaccines pretty confident nothing would happen to us.
The next day after the table conversation, I promptly called Josiah’s daycare provider. Surely she would have told me if she was concerned about something. She said she kind of noticed he was behind other kids his age but that every kid developed at their own pace. It had been a bit harder to get his attention too lately, but it wasn’t a big concern for her yet.
Sure, we were first-time parents and didn’t have anything to compare things to, but the little concerns we had like why Josiah wasn’t “getting” the waving goodbye thing, and why he was suddenly fascinated with pulling little girls’ hair, and why he didn’t seem to be imitating my teaching of his body parts every bath night–they all seemed like things he’d grow into. The scariest thing we had to deal with at that point was that it took him until 17 months to walk, but once he got to it, we were relieved and on with life. Maybe he was just a late bloomer.
“PLEASE, LET IT JUST BE A DEVELOPMENTAL DELAY”
I remember being so scared by the uncertainty, and I had to fly out that week for a couple of days for business but just wanted to figure out what was going on get to a pediatrician for answers. We were in the pediatrician’s office within a week. He said, “Well, we could wait and see for six months…” I promptly said, “Or?” and he got us referred to a place to see if speech and OT therapy were needed. Thus began our long journey of testing and theories and agonizing days.
I don’t exaggerate when I say that literally within the next three weeks after the word “autism” was spoken at that table that our precious child regressed before our eyes–losing more words, losing eye contact, and not responding to his name. I had to put a blanket over Josiah and me to get him to even look at me. I was losing him and it absolutely terrified me. Still, we had no real answers. “Please, ANYTHING but autism,” I prayed.
“CAN WE GO ON? YES, WE MUST!”
Labor Day 2007 was a real low point. I so felt like I had been kicked in the gut over and over again that I physically could not stand up straight. I cried my eyes out into a bath towel. I had a feeling that life would never be the same again and as my husband and I struggled to catch our breath between tears, we wondered how we could go on. Maybe, just maybe, it was just a developmental delay or something less severe, we tried to assure each other. But, you know the rest of the story.
One year later. We were able to go on. We sifted through many bleak websites and books about autism and turned up some gems of hope to get us going in the right direction. Our son is improving through biomedical treatment and intense (ABA-Applied Verbal Behavior) therapy. and we really believe that he WILL succeed over the next few years and be ready for regular school. We believe he’ll have friends and a great sense of humore. Our faith has been tested to the limits with questions and doubts, but we still believe that God has a plan and loves us and our beautiful son. This year has brought out the best and the worst in us, but we are still standing.
In the midst of it all, our hearts have turned outward and we want to be able to help others somehow who find themselves in those early stages of this whole confusing ordeal. This post is really for you. Don’t give up hope. Do your research. Know you’re in for a long climb, but you can do this. You have to, and you can do all things through Christ who gives you strength! It will start getting a little easier. Through the fits and starts of adrenaline and action, you’ll learn to ride out the plateaus. You will find comfort in the fact that you’re not going through this alone.