Story of hope by mom
At the end of 2004, we were eagerly awaiting the birth of our first child, a son we planned to name Bryce. My pregnancy had been relatively easy and there were no major complications. The only “issue” was how large I was measuring. My doctor was considering taking him early, so we went for an amnio at 37 weeks. The tests showed his lungs were matured and he was cleared to be taken early, but as it worked out, there were no openings in either area hospital. We were having a local baby boom and I wasn’t a priority for a slot. So we waited. And waited. My due date came and went with no signs of being “ready.” Finally, I was induced 5 days after my due date. Labor progressed pretty quickly and thanks to my epidural, painlessly. That’s where the easy part ended. I was fully dilated, so I started to push. And push. And push. FOUR HOURS later, he was finally HERE! All 9 pounds, 4 ounces of him. After being checked out, he was brought to my room and began the journey down the road of parenthood.
Looking back, there were signs everywhere that Bryce was “different.” He refused to breast-feed. Some of that was he was so big and so hungry and I had poor production. But he didn’t seem to like being held close to my skin. People would comment about how focused he was for such a little baby. He was so easy- I just put him down in the crib for his naps and he would lie there until he talked himself to sleep. He was happy to be alone. He would just stare at the lights above his head. But he was smiley and hit all his milestones, so I wasn’t worried. If he had been a second child, I would have noticed things earlier, I’m sure. He didn’t play with toys normally. He LOVED to line things up in a row. He knew his ABC’s before he was 2. He would read license plates as we walked by. And that was his ONLY verbal communication. He didn’t ask for things. He would go all day without eating or drinking if I didn’t give it to him. By the time he was 2, I was a little concerned. I mentioned his lack of speech to his pediatrician when he had his 2 year appointment. She sent us to a neurologist for testing.
Here is where I wish I’d know more about what we were getting into at the time. I feel like we wasted so much time. It took weeks to get referrals through, and we had to have blood work done, an MRI (which was totally traumatizing for me) and a sleep-deprived EEG. Or something like that. It’s all a blur right now. Most of that was to rule out other things. By the time all the testing was done, we were back where we started. (For a play-by-play of this process, read my post Looking Back) There was nothing physically wrong with him. Here is where I should have pushed for the Autism diagnosis. But I didn’t want to “label” my child and have him put in a box for the rest of his life. I kept hoping he would just “grow out of it.” We did get him into our Regional Center program and he had someone come work with him once a week. We also took him to Language class once a week. This did help some- I heard him speak his first word besides Elmo and Apple to the therapist: White. She wanted him to say the color before he could play with a toy. I couldn’t believe he did it! When he turned 3 (which was only about 5 months after we started this program) he was turned over to the school system. It was hard to leave him at school, even for a few hours, but he really needed it. I don’t regret it one bit. After spending the semester in Special Day Class, his teacher approached me about his “autistic-like” behaviors. By then, I knew that’s what it had to be. There was no other explanation. She encouraged me to get a formal diagnosis so he would qualify for more services. So finally, around 4, it was there in black and white: Autism.
Autism may make your life more complicated than you envisioned it being, but it doesn’t have to destroy you. The fact that Bryce is autistic is what gives him his most endearing qualities. He’s so full of joy and innocence and laughter. Sure, he’s had his ups and downs, but there are moments here and there that become so sweet and special. These moments would be glossed over or lost to parents of a typical child. I went back through my blog, Living with Autism to get a sampling of some of those special moments we’ve experienced over the years.
Last night at church, Bryce was sitting with Uncle Nathan and Aunt Carrie as Jared and I were on the platform. He hadn’t seen Carrie all day, and when he glanced up at her he did a double-take and whispered, “What a mess!” Carrie crouched down to hear him better and asked him what he said. He looked at her and said, “I got a haircut!” (He meant she got a haircut, which she did this week and most of us didn’t even notice) Then he reached up and pushed her bangs to each side of her face and said, “That’s better.” Don’t try to sneak anything by that boy- he WILL notice! (August 2010)
Anyone with an autistic child will tell you that there’s rarely such a thing as spontaneous gestures of affection. Bryce has never brought me a flower from the yard, or come up to me and said, “Mommy, I love you.” I don’t get kisses “just because.” I may never get a Mother’s Day card that was not purchased by Daddy or created at school. This is not to say he isn’t affectionate at all. But his affections are usually in response to ours. It’s a learned response. Just like, “Hi, how are you?” “I’m fine, thank you.” Or “What do you say?” “Excuse me.” So the other night, I was saying goodnight to him like I always do. He was in bed already and the lights were off. I kissed him on the forehead and said, “Goodnight, I love you.” He responded, “Goodnight, I love you.” But then he did something totally unexpected. As I turned to leave the room, he grabbed my wrist and said, “One hundred kisses.” I was surprised and it took me a minute to respond. I realized he was asking for 100 kisses instead of a kiss goodnight. I countered with, “How about five kisses?” He then negotiated, “How about TEN kisses?” How could I say no to that? So I kissed him all over his face while counting to ten and then he just giggled then turned over to go to sleep! My sweet boy- how I love him! (March 2011)
Tonight Bryce was playing Wii by himself as he usually does when he turned around and said, “Dad, it’s your turn.” No one had really been paying attention to him, but he had set up a game of Frisbee with four players. Each one of us had our Mii character loaded and ready to go! He came into the room where I was blogging and said, “Mom, we need to play four players. You and Henry come here.” For someone who is always wrapped up in himself and could happily play Wii for hours if you let him, this was a pretty big deal! We had a great game of Frisbee and then another game of Bowling with all four of us, while Charlie watched happily from the chair. It was a fun way to end the evening right before bedtime. Thanks for including us, Bryce! (September 2012)
Lance is Jared’s older brother. He and his family came to visit us one day over the break. We had a wonderful time with them, as they have three boys as well. The cousins had a blast together, and Lance really seemed to enjoy Bryce. He and Bryce sat next to one another while we had breakfast at Jared’s Denny’s the morning they were heading home. Lance kept teasing Bryce about his pancakes. He said, “They are all out of syrup, so you’re going to get hot sauce for your pancakes instead, OK?” Bryce just laughed and said, “No! That’s silly! You don’t put hot sauce on your pancakes!” (Once again, I wish you could read inflection- his little voice just goes up and down with exaggerated emotion, especially when you’re talking about absurdities.) Later, Lance told him that the butter was gone, so he was going to use sour cream instead. Again, Bryce just laughed and thought Uncle Lance was so silly. This is really huge progress for someone who is autistic. A year ago, Bryce would have cried because he would really believe that someone was going to ruin his breakfast. Now, he sees the absurd and teasing part of things and is learning to enjoy humor. So thanks, Uncle Lance, for including Bryce in the conversation and making him enjoy your visit! Little things like that don’t go overlooked! (December 2012)
Tonight after dinner we went to the park to take a walk and play on the playground. Normally when we go to the park, Bryce will wander around a bit and climb on a few of the play structures but he keeps to himself. He often is “silly thinking” while doing this (that’s the term Mrs. Linda came up with in regard to his verbal stimming). The playground we went to tonight has a little see-saw which he loves to bounce on. He and I were playing on it together when a little girl came up and stood there waiting for a turn. Bryce was going to get off, but I told him to play with her and got off so she could ride with him. I was pleasantly surprised to see him interact with her. She talked to him and asked him questions and he answered correctly and carried on a conversation so well! They moved on from the see-saw to playing “chase” all over the playground. I can’t tell you how grateful I am to a little girl named Ashmin for treating my son like any other child and accepting the extra work it is to be a friend to him. It was a little glimpse of “normal” and such a refreshing way to end our day! (July 2013)
Bryce may have his quirks and obsessions, and things may be harder to deal with because of his “condition,” but he is still our son. Our sweet, special boy who’s quick to laugh, generous with hugs, soft-hearted and oh-so-smart! I can’t wait to see where this journey will take us and what kind of influence he’s going to have on the world around him. I know he’s already changed our lives. For the better.
Thanks for sharing all these great moments of Bryce. He has such and infectious smile! I love your last two lines. “…he’s already changed our lives. For the better.” I wish all parents could have this perspective. To realize life is all about change and it is from the change that can build our character and make us better. Change continues to come to our family on a daily basis. Sometimes is is autism related and sometimes it is not, but change it is. And change for the better!
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