Tuesday, April 29, 2014

Causes: Autism Awareness Month, A Parent's Perspective.

My second guest poster on the topic of Autism Awareness Month is an internet friend, Nicole, from my Myra's Due Date Club.  She was due with her youngest the same month I was due with Myra.  I have heard bits and pieces of her older son's story, but reading it in its entirety was different.  Even though we've never met in person, it warms my heart to know sweet kiddos like hers are in such good hands.  Thank you, Nicole, for sharing Liam's story.

I still remember the day I found out we were expecting my 2nd child. I was absolutely overjoyed when I saw those two pink lines. Thinking about it still makes me smile. My pregnancy with this little boy, whom I would later come to know as Liam, was not without event. The doctors told me that he was going to be miscarried. Despite their predictions, he lived. My cervix began “funneling” at about 18 weeks, which is a fancy way of saying that it was basically starting to open. They told me that he would most likely be born early, and that he could even die because he would be too early to be viable. He stayed. He lived. He grew and thrived. I developed preeclampsia toward the end of pregnancy. They laid out all the risks to him and to me. But by then I knew better. I knew that he strong. I knew that he was a fighter. I knew that he was a force to be reckoned with. And mostly, I knew that my God must have big plans for this boy that was spared from death so many times before even being born.

He was born a few weeks later. He did not cry. I only caught the briefest glimpse of him before he was rushed away. A small crowd of nurses worked on him. The room was so quiet. No one spoke. I kept asking if he was okay, over and over and over again, sure that no one was hearing me. Finally a nurse came over and took my hand. “We don’t know,” she said. “They are doing everything they can.” I don’t think I will ever forget that moment. It was like I’d been punched it the throat. My miracle baby, my sweet boy who had already defied death many times over, might die. After the longest moments, I heard a nurse triumphantly declare, “Okay! He’s breathing! Let’s get him up the NICU.” He lived. He was strong. He was a fighter. He was a force to be reckoned with. God had spared him, yet again.
Liam was such an easy baby. He was truly a joy. He ate well, he slept well, and he rarely cried. As the months went on, his tumultuous start to life faded more and more into the background. He was alive. He was healthy. We were blessed.

As he grew, there were times when the little “mom alarm” bells would go off in my head. His core strength seemed low, he was constantly a bit late with milestones, and something just seemed different about him. My fears were eased by the pediatrician. He told me that all kids developed a little differently, and that there was nothing to worry about. I couldn’t put my finger on it, but in the deepest place in my heart, I knew something was different.
The first big clue was when he was still completely non verbal at 18 months. A lot of people told me that I was making too much of it. Plenty of kids didn’t talk well until later. It wasn’t just words, though. He didn’t grunt, didn’t point, and didn’t babble. He didn’t gesture, or attempt to mimic any sounds. He was silent or he was crying. There was nothing else, there was no in between. It turned out that my hunch was right. He was evaluated and diagnosed with a significant speech and communication delay. He began speech therapy at 18 months old with the communication skills of a 7 month old.

Through all of this, the idea of autism was readily brought up and dismissed by the developmental pediatrician, by the speech language pathologist, and even the audiologist. He didn’t look autistic. He didn’t seem autistic. He was sometimes willing to have “shared attention” which is not a typical trait of autistic kids.
He had a follow up with the developmental when he turned three. He started to ask a series of questions. I was a bit taken aback by them, and even more so by my honest answers.

Yes, he hates wearing socks. We buy him special ones that don’t have seams in them.
Yes, he hates wearing shoes. We have to get ones without laces that are a full size too big so he’ll even wear them.

Yes, he has difficulty with clothing, such as shirts with tags or pants with stiff seams.
Yes, he is obsessed with collections like rocks and cars. He likes to sort them, and line them up, and organize them, but he doesn’t really play with them.

Yes, he has a limited diet. He refuses to eat anything that isn’t smooth and white.
Yes, he walks on his tiptoes a lot.

Yes, he flaps his hands as well.
Yes, he melts down in loud or crowded settings.

Yes, he fixates on spinning objects like wheels or fans.
Yes, he seems to want to play with other kids, but he avoids them most of the time.

Yes, he is often off by himself when a group of children is playing.
Yes, he gets a vacant look and spins in circles when a room is too loud or too busy.

Yes, he mouths objects a lot more than a 3 year old should.

Yes, he avoids eye contact.

Yes, he shies away from affection.
Yes. Yes. Yes. Yes. Yes. Over and over again. Before the pediatrician even said anything, before he even finished asking the questions, it hit me.

These are traits of autism. He’s screening for autism. And I keep saying yes. It was both shocking and unsurprising at the same time. People had said over and over again that he didn’t seem autistic when he was younger. It was shocking that he could be. However, as I answered the questions out loud it all clicked into place. He was different. All the feelings that I had throughout his little life that he was different, that I couldn’t put my finger on were suddenly confirmed, right there in that room. We were sent for further testing from a child psychologist, which months later did confirm what the pediatrician and I both knew that day in that room.
Liam is autistic.

He is considered high functioning autistic. It was a realization that both rocked my world, and yet didn’t change anything at all. I felt more armed. I had more knowledge about what was going on, and I had a better direction to take to best help him. However, diagnosis and all he is still Liam. He is my sweet, funny boy that loves cars, and dinos, and mashed potatoes. He loves to run with his big brother and tickle his baby brother. He has an infectious laugh and a wonderful smile. He is bright, focused, and always tries his hardest.

Just over a year after he began, at about 2 and a half years old, Liam graduated from speech therapy. He went from testing at a level 11 months under his actual age to testing within the standard deviation of normal for his age. We were so excited! It had been long and exhausting. My husband and I had long conversations in the night about whether he would ever speak at all. We wondered if he would have a normal childhood, a normal life! Even his therapists were shocked and amazed by his progress. We credit God with every bit of his progress and we are so thankful and in awe.
Liam is currently in occupation therapy. His progress there is over and above what anyone has expected of him. I consider it a gift to watch him learn, and develop, and grow. He sees life through a different lens than most people. His progress is the unmistakable work of God.

Many people that I have encountered view autism as a disability. A disadvantage. A form of brokenness. But I don’t see it that way. It’s a difference. That’s all it is. A deviation of normal. And for my family, personally, it is a gift. Liam’s autism has changed our family. I now take very little for granted. I celebrate every small victory. I see more good in everything. And I praise God daily for the gift of having this slightly different little boy in my life. I’ve been asked by well meaning, but insensitive people, if I wished that Liam had been born normal. I tell them no with confidence. I have an extraordinary boy. Autism is a part of who he is. If he wasn’t autistic, he wouldn’t be the same Liam, and I love him just like he is.

A diagnosis of autism raises as many questions as it provides answers. It’s not well understood. It’s more of a classification of a combination of behaviors and traits. There is a lot of speculation about what causes autism, and no concrete answers. There is a strong correlation of a genetic component, but beyond that most guesses are shots in the dark. People blame everything from vaccines, to electronics, to GMOs, to ultrasounds. I choose to not guess. I choose to not speculate. I choose to not wonder because this is what I know.

Liam, like every person on this earth, was fearfully and wonderfully made. God knew him before the foundations of the earth and he knit him together in my womb. Diagnosis or no diagnosis Liam is exactly the boy he was created to be and he’s leading exactly the life he’s supposed to lead. God doesn’t make mistakes. Liam is perfect. He is strong. He’s a fighter. He’s a force to be reckoned with. God has great plans for this little boy.

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