A is for Asperger's

**This is A in the A-Z series**

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.

Courage Reigns

I've decided to enroll the young man in horse back riding lessons for kids with disabilities. There is a place near our house that works exclusively with kids who have to learn to navigate their own disabilities and function the best that they can despite their disabilities. They take all kinds over there; muscular dystrophy, cerebral palsy, brain damage, physical and mental ailments, and autism. I've read many times that the benefits of hippotherapy can be great for these kinds of kids. They learn a new skill, get to do something fun, build self-confidence, better posture, better balance, better gross and fine motor skills, and a whole host of other positive benefits too. So I gathered my courage and I gave the place a call. And the conversation went something like this:

Me: "Hi, I'd like to enquire about enrolling my son in horse back riding lessons with you guys".
Vicki: "Great, tell me about your son"
Me: "Well, he has been expressing a real interest in learning to ride horses and as he has problems with his coordination, I thought this might be a really good fit for him"
Me: (with nervous laughter) "He sort of trips over his own feet and we would like it if he could develop his gross motor skills more"
Vicki: "What is his particular disability?"
Me: "Autism"

And just like that, I dropped the "A" word. I dropped it casually, as if I were simply discussing a type of flower, or the weather. We discussed his condition like we were remarking on the sunny weather. And when I said the word, the dreaded "A" word, I waited for the sting. I waited for the pain that inevitably has come along with that word every.single.time I've said it or thought it since the diagnosis. The sense of injustice, of unfairness and self-pity that have attached themselves to that word as if they really belong there. And you know what? It didn't come. There was no pain, no sting, no self-pity. I felt no shame. Only pride. Pride in a child who is so special, who has come so far, and who I know will do great things with his life. I also felt excitement, almost giddy at the possibilities his young life holds and even those that will be afforded by his condition. There are indeed positive things associated with his autism. I'm starting to notice them. I was so excited for him to start horse back riding lessons and I didn't think once about if he could do it. I know he can do it.

There are so many "increased likelihoods" that attach themselves to a diagnosis of autism. There is an increased likelihood of depression, suicide, loneliness, etc. Just imagine a world where people are cruel to you or exclude you simply because they do not understand you and do not wish to try and you can fill in the blank with the mental conditions that can come along with that kind of rejection. So many of these "likelihoods" have been following me around, scaring me to death about his future, plunging me into my own depression and self-pity, and worst of all, making me feel helpless. It is only recently that I realized I actually have a choice.

I can choose to live in fear, or I can choose to live. I can choose to expect the worst, or I can choose to hope for the best. And you know what? He will be okay. His life will be good. I choose hope. I choose to live.

Tucking in Young Man

Dearest Young Man,

Last night I went into your room to kiss you goodnight. You had been asleep for a few hours, but I was at your Aunt L's house and missed tucking you into bed. You were laying on your back, breathing with your mouth open and one arm flung over your blanket which was draped across your chest. Your hair was sweaty and I wondered why kids always get sweaty when they sleep, even with the covers off. I pulled your blankets up to your chin so you would stay warm and then I just looked at you. I looked at the masterpiece that God had sent to me. I wondered how He ever thought that I could deserve you. How could I get such a special kid that was going to need to be brought up with extra care? I am selfish, immature, and clueless so much of the time that when I look at you, along with all the love I feel is also a whole heap of inadequacy.

I can't even put into words the depth to which I love you. I think you are one of the most perfect beings to ever exist along with your dad and your sister. You are amazing in every way and every single day you find new ways to amaze me. It's unfortunate that I still feel like a little girl so much of the time because you deserve a Mom who really understands how to be a parent. You'd think by now I might have stopped flailing like a drowning person but here I am, still flailing away.

I know I get mad at you sometimes. I say things I shouldn't in moments of anger and sometimes I am just mean. I know I get so frustrated with you so often. It's not fair because it's not really you that I feel angry and frustrated at. I feel this toward your autism. Every single day I am angry at the whole world and even at God that you have to learn to live with autism and that I have to learn how to manage the special needs that you will have. Every single day I feel alone and like there is no one in my life that really understands what I'm feeling. So I lash out. At you and at your dad, and the world really when I withdraw myself from it. I want to stop crying. I want to stop feeling sad and just marvel at the goodness and intelligence that you possess. I know that I am blessed to have you. I am so blessed to have you.

I swear I wouldn't trade you for anything, not even a "normal" kid. You are mine. I see it in your smile, your obstinance, and even your eyes just a little, even though they are mostly your Dad's eyes. You are mine. Someday, when the veil has lifted, you will be able to tell me why you chose me to be your Mom. I can't wait to hear it. You are so dang smart that I know you are destined for really great things here and in this life. So please know that even though it's going to be harder for you to be a kid than many other children, and even though not everyone you encounter in your life will understand you or even be kind to you, that I am always going to be your mother. And my love may not be perfect, but it is immense. I think it could fill an ocean. I will always be proud of you. I will always support you even though I am a coward and it's really hard for me to confront other people who may need confronting. I could never stop loving you and I promise to celebrate your every accomplishment, even the little ones. You are my son, my child, and one of the greatest loves of my life.

Differences

I've been thinking lately. And my thoughts have been kind of troubled. I'm sure you might have guessed lately that I've been feeling "down". I hate to burden you with it, but then again, I'm just writing down my thoughts, it's up to you if you allow them to burden you :). I think being a mom is the hardest thing in the world. Every single day I feel like quitting. Like throwing my hands up in the air and saying, "forget it". But you can't do that when you're a mom. You can't quit. It's the one job that you absolutely cannot turn in your letter of resignation. The second that Mr. Sperm was introduced to Miss Egg, I was beholden to the little zygote. And I don't regret it, that joining of DNA that resulted in 2 wonderful children (though not at the same time). But that doesn't mean that I don't doubt myself.

I'm not going to lie to you, I feel like a lousy mom. If my kids grow up to be a couple of Mansens, well, it's not their fault. It's up to me to mold their little minds, to shape the people that they will become. And it is such a burden, trying to make decent human beings. Every day I feel like ultimately, I will fail them. I especially feel like I will fail Young Man. His particular DNA came with a special set of circumstances. If you know Young Man, you know he's different. You'd call him charming, but you'd also call him quirky. He is absolutely unique. He is who he is, which is unlike most of the little kids we come across in our lives. I can appreciate this. But unfortunately, the world we live in and anything "different" often do not mesh. People don't understand Young Man, and to tell you the truth, I do not understand him either.

If you have one of these unique kids, then you know what I'm talking about. You know how I feel. If you don't, well, then you'd probably tell me to just "get over it". I knew from the time he was 2 years old of his differences. And I spent at least 2 years trying to convince myself that it was all in my head. I desperately sought for people to tell me I was nuts, that there was nothing different there. But Young Man didn't speak until he was 3, and then it was this strange kind of echolalia that made the hairs on my arms stand up for quite awhile. Just when I thought I couldn't take it anymore, he walked up to me one day and literally spoke a complete, complex sentence that was an original thought. His speech therapist was floored. I was elated. He was finally "normal". But you know what, he was still who he was, just with the ability to tell me about it.

I have utterly failed him already because I cannot just accept him the way he is. I struggle every.single.day with my immense guilt and the hate I feel for myself when I get embarrassed at something he does rather that support him. I am his advocate, but here I am hiding under a rock. Have you gathered yet how very painful this is. It is awful. Thankfully he is fine and has not yet felt the sting of the world. But I am shouldering a burden that is going to crush me very soon. And you know the worst part, I feel completely alone. I am wallowing in misery, guilt, and complete confusion, and I am looking for a hand up. Anything. He has trouble socializing with other kids, and unfortunately, he is not given the chance to practice.

I know this sounds bad. Trust me, I know. I guess I hope that someone out there will read this, someone who feels the way I do, and she will not feel alone. She'll know that she's not the only one in the world feeling such terrible things. She'll know she's not the only mother out there that cannot seem to stop mourning the loss of a child she never had. I don't know what it's like to have a "normal" little boy. I don't know what it's like to have a child that other children like to play with and invite to birthday parties. Princess is too young to have really had any of these experiences yet.

You know, I never talk about this. And the few times I've gotten up the guts to mention it, I really only scratch the surface. I cannot fathom the depth of my sadness over this. He is healthy, he is beautiful, he is wonderful and smart. So what is my problem? I cannot help but fear that his will be a life filled with judgement and rejection. And I ache to think of my beautiful little boy feeling desperately alone. So there is one thing I'm working on and it is that he may never, ever think for one second that he is not completely loved and accepted by me. His Mother.