My wonderful sister-in-law recently committed to blog for every letter of the alphabet in the month of April. I admire this ambitious endeavor though I would probably never take it on myself. I know she'll do it. Me however, I know I would be setting myself up for failure. Anyway, she wrote her first post and it was titled, "A is for Asperger's". It was a sweet, informative post that I feel sort of laid her soul bare for the world (she believes that she would have been diagnosed with this disorder had she been evaluated as a child, and I think she is right). It got me thinking. Asperger Syndrome (pronounced AZ-perger, not ASS-perger or ASS-burger) has become so common that most of us are affected by it or know someone who is affected by it. We are closely affected by it. Our 8 year old son Noah has carried the diagnosis since he was 5 years old. We knew "something" was wrong though long before that.
I'll never forget the day Noah was born. I mean, what mother actually could forget the day their child came screaming into the world. Only Noah didn't scream. He came out with his eyes wide open, just staring around at everything. No crying. Very little squirming. Just wide eyed wonder at what was happening to him. I was terrified something was wrong because I was trained by many books and TV shows that babies come out screaming if they're healthy. I remember the doctor had to "rough him up" a little to get a small screech out of him. But nothing was wrong. And I have come to realize that the way Noah was born fits perfectly with who he is now.
We joked that he was an old soul because of his super long hair and wise little look. He was so dang cute. I thought he was perfect. He cried when he was hungry or needed something and that was pretty much it. At 6 weeks old he began sleeping through the night. I remember well the first morning I awoke and instantaneously realized that he had not gotten up at night to eat. I was so sure he was dead that I woke Joe and made him check the baby. I was terrified to look and see that he had died sometime in the night and we had slept right through it. I can be sort of pessimistic like that. Joe checked and it turned out that he was fine.
Noah grew to be so beautiful and so chubby. Random strangers often stopped us to remark at what a beautiful baby he was. At 3 months he needed his first haircut and we took him to a barber shop. He was hitting his milestones and had the most beautiful little smile. Life was wonderful. Our little man was so perfect.
When Noah was 2, I began to be very concerned that he wasn't developing language properly and he could not eat textured food. I was still feeding him baby food out of a jar. Any other food would cause him to gag and throw up. He had not pointed and he would not speak unless I asked him to say a word. He would repeat that one word, often using the same perfect diction and inflection that I used. And like so many it seems, every time I brought my concerns up with the pediatrician I got the old, "he'll catch up" dismissal. My intuition was screaming at me that something was wrong but no one, including me, wanted to believe it.
By the time Noah was 5, I knew he had autism. He spoke just fine, wanted to be social, even had a few friends. But he was odd, he struggled with social interaction, and well....he was just really quirky. I had been so freaking scared to face the truth that when I finally approached his speech therapist about my suspicions, I felt like I had unloaded a semi from my shoulders. We had him evaluated at the University of Utah and they confirmed my suspicions.
You would think my world had ended the way I reacted. I'm ashamed of it still to this day. I cried...for like a year straight. I felt like his life was over and so was ours. I even once thought it would be better if he had been diagnosed with cancer. At least then he would be "normal". I refused to take him anywhere for fear of how we would be judged. Not just him, but me too. I separated myself from neighbors, church members, friends and even family. Basically, I threw myself the biggest pity party the world has ever seen. My pity party culminated in me feeling like I just wanted to die, and seriously considering leaving my car running...with me in it...with the garage door closed.
It took me quite awhile to come to terms with Noah's diagnosis. I was so afraid that he couldn't have a fulfilling or happy life with AS. Thankfully I climbed out of the hole I had dug myself before he grew up and had a perfect life just to spite me for giving up on him before he'd even had a chance to grow. I stopped asking "why us, why him" and started seeing the many blessings and tender mercies of the Lord that we had been given along the way. I started to see exactly who he was and even a small glimmer of who he was going to become (and he's gonna become something awesome, I just know it). I'm still scared sometimes and occasionally I still feel a little embarrassed at his quirks. But mostly I am happy to have him and proud of all his accomplishments. And so happy he's here with me in this life.
Noah is so dang smart, funny, charming, sweet, entertaining and all around wonderful. He always has been. Sure he gets into some interesting situations, collects things like you wouldn't believe, says the quirkiest things, and has lots of interesting hang ups when it comes to food. But I wouldn't trade him for the world. He brings so much joy into our lives. And he makes me see the world differently. Because of him, I'm able to understand in the most fundamental way that perfection is completely subjective. He is perfect to me.
I wanted to write this post because it very briefly touches on what it was like to have a child diagnosed on the spectrum. From a mother's point of view. I'm ashamed of who I became when I was confronted with the reality of his difficulties but I'm proud of who I've grown into because of them. We are definitely thrown curve balls in this life and how we handle them will define who we are. I don't want to be scared, hiding in a corner, afraid of life's challenges. I'd rather meet them head on, grow from them, and be an example for my children. Thankfully, I don't have to be perfect. And neither do they.