Part of me wishes I could gather together all of the doctors and specialists that have something to say about my son. I would then throw them in a ring together so they can duke out his diagnosis. They all have something different to say. Part of me, if I’m honest, has been hoping to hear just one of them say that there’s absolutely nothing wrong with him and all the other opinions are bogus and he is brilliant and gifted and bound to be a smashing success in life. Unfortunately, the one thing they can agree on is that he is a blond. Here’s the thing about blonds– or should I say, those who are on the “blond spectrum”. They may be platinum blond, dirty blond, strawberry blond, sandy blond, bottle-job blond, verbal, non-verbal, savant, sensory challenged, antisocial, repetitive and so forth. No matter how you classify it, they are all blond. I brought my little blond-headed kid to Macon today to meet with an ASD specialist (who is named Dr. Duke ironically enough). She had one thing going for her for sure that has set her apart from anyone else I’ve talked to about Salem’s mystery condition. She has a son with Asperger’s syndrome. Three hours into our visit, I took the greatest comfort in knowing that she knows more from first-hand experience about what I am dealing with on a daily basis with my son than anyone I have consulted in the medical community thus far. Somehow, that gave her more authority to speak into our situation. She seemed very confident that Salem is an Asperger-blond, which nobody has come right out and said. For eight months now we’ve been circling the same spectrum. For crying out loud, will somebody please land the plane? Forgive me, but I would like to know just what shade of blond my son is sporting. When he was first born I studied all of the creases in his chubby fingers, and I knew that his foot was exactly the length of my pointer finger. If I look deep enough into his piercing blue eyes, his right iris bears a speck of hazel at 4 o’clock that identifies part of him, even if it is only a small part of him, with me. So while medical science is now more sophisticated than ever with all of its advanced diagnostics and complex protocols, a broad-stroke ASD consensus just isn’t good enough for me. Dr. Duke used a lot of confusing medical terms that left me nodding my head like I knew what she was talking about, but really I had no idea. I sort of tuned out most of the medical jargon and just fixed myself on this particular word she kept using… this word, “recovery”. In context, she said that she “recovered her son from Asperger’s”. He is now 17, and in mainstream education/gifted classes. He’s on Facebook, and he participates in study groups. Perhaps it was the fact that she looked identical to Christy Nockels, but she was/is completely gorgeous and hardly resembles the mother of a 17-year-old boy, much less one with a complicated neurobehavioral disorder. One thing I have noticed in my limited experience with other parents who are raising children with special needs, no matter if it is physical or of the less-apparent-to-the-naked-eye variety, we all just look sort of…weathered. We can all agree that parenting in general is exhausting, but there’s a big difference in looking tired and a looking weathered. Tired parents need a nap. Weathered parents need hope. Tired parents are training their kids to say please and thank you, to aim for the toilet, and to color in the lines. Weathered parents need hope that their kids will one day be able to dress themselves, to sit through Thanksgiving dinner without having a sensory meltdown, or that they will beat the odds of other special needs children who don’t typically grow up and get married and have children of their own. But this doctor, or should I say this mother didn’t look tired or weathered. She looked like somebody that I would enjoy having a laugh with over a glass of Cabernet. She looked like someone who had managed to rise above all of the statistics and not only recover her son but recover herself in the process. It reminded me that being a parent is hard enough, but when you’re the parent of a child with special needs, maintaining your own sense of self is without a doubt the first thing prone to falling by the wayside. I feel the tug to let myself go every single day. When you have a child that can’t stand the sound of loud laughter and covers his ears and starts screaming when you sing or even hum, you begin to naturally avoid things that you once found amusing. You wait until he is sleeping to play music around the house so you won’t be tempted to sing-along. Little pieces of yourself start to erode until you can’t recognize what formerly made you come alive. While you are so determined to provide every opportunity for that child to thrive, one can easily forget what it is like to thrive themselves. Dr. Duke gave me hope. Hope that Salem really could rise above this hand he has been dealt. Hope that the four of us Beasleys will learn how to live together under one roof in peace and harmony. Hope that when he is 17, I will be able to remember who I was before his diagnosis. So, our Macon voyage was successful today in the sense that I am returning home with a sleeping son in the backseat who is clutching his oversized stuffed bunny, and I now have a little bit better understanding of his blond-ness. But also I have a picture of hope that the future with a child with Asperger’s can hold some recovery. And I will take all the hope I can get right now.
Birthday blog post
Today is my birthday. We all know I have never been one to keep quiet about my birthday. I tell the post man, the bag boy, the drive-thru teller, EVERYONE that I am celebrating myself on this day and it is perfectly all right for them to join in because you never know if someone might just be looking for the perfect excuse to party, so why not lend some spirit to help your fellow man? So, hip hip for me, right?
As of late, Salem has become nocturnal… Part of the ASD benefits package. At 4am I sent him back to bed again completely devastating his dreams of becoming the next Buddy Rich because I wouldn’t let him have his drum sticks. After several more bedside visits from my sleepless sweet pea, I cursed insomnia, ASD, and Buddy Rich and began to brew my light roast. “Happy Chong-day, Mommy”. No idea how Salem interpreted Happy BIRTH-day as Happy Chong-day, nevertheless he has been roaming the house singing, “Happy Chong-day to you” and then bursting into a fit of laughter, and I don’t have the heart to tell him to stop because people are going to wonder what kind of mother I am to let my kid watch Cheech and Chong (which I most certainly do not). So, there you have it. Happy Chong-day to me.
And then there is Mia. My sweet, compliant, peach-of-a-child, Amelia… Her gift to me this morning was a screaming, fitting sprint down the hallway while I’m chasing her in feeble attempts to wrestle some loose change that she snatched from her daddy’s nightstand. She still puts everything in her mouth, and can therefore not be left unattended with money that’s been handled by only God knows who. We are presently working on the “Yes, Ma’am” response when Mommy tells her to obey, and yet she responds by turning her nose up at me as if to say, “Nice try, Lady. You are not the boss of me.” I don’t need a prophetic word to warn me this is coming down the pipe as she’s about to round age 2. After several attempts with the wooden spoon to elicit the desired response, she strings together a host of intelligible words including but not limited to, “oh dear!, princess, Daddy, George,” and “chicken nuggets”. As far as I can tell, none of those sound like “Yes, Ma’am”. All of a sudden I remember it is my birthday and the last thing I want to do is get into a power struggle with my daughter, so I did something I NEVER do…
I gave up.
I’m usually one to stand my ground to the death in a moment of discipline, but instead, I carried her downstairs in a bundled heap, placed her in her Daddy’s arms, and headed to my pot of light roast that I brewed FORTY-FIVE MINUTES AGO!
And then it happened. The coffee filter had collapsed into a pool of muddy water, thus thwarting my caffeine redemption. And then I collapsed into a Mommy-sized tantrum that trumped anything my two year old could have dished out five minutes earlier. I’m talking cabinet-slamming, sippy-cup-throwing, silverware-drawer-clanging fit-‘o-the-year. Nothing like a happy birthday to bring out the toddler in you. I think I may have even said, “For crying out loud, this is MY CHONG DAY!”
Just as I escaped to my bed for a make shift do-over of this entire morning, I tried to muster the thirty-two-year-old maturity to reach over and select some inspiration from the stack of books on my nightstand… Nouwen, Stanley, Moore, and Jakes…No sale. Instead I referenced this prayer from the modern-day theologian, Tina Fey. Suddenly, I forgot about the insomnia, the loose-change mayhem, and the poo poo pot of coffee. For in that brief moment, I took great comfort in the reminder that love, and a good laugh, cover over a multitude of evils. In all fairness, if you are the sort of person that becomes easily offended at the use of colorful language and raw candidness, I suggest you forego clicking on the aforementioned prayer, however, if you are the type of person that is put off by poetic profanity and self-deprecating humor, I wonder how we are friends and why you are still reading this blog. Still, I can respect those who are sarcasm-free even though my mind is a constant narrative of, “Oh, The Thinks You Can’t Tweet.”
Happy “Chong”-Day, Everyone!
Mile 1: Getting reacquainted
…favorite tunes are pumping, body is falling into stride, feeling good in my skin again as complete thoughts begin to flow. No little voices begging for a juice re-fill? No stopping mid-stride to change a diaper? No spelling the big words? Nope, it’s just me and more me, a rhythmic indulgence of unedited thought… a chance to blow the dust off my adult intellect which, let’s face it, wouldn’t stretch past the first mile anyway, but for now, life is good, I’m a rock star, and brilliance is mine if I can just keep putting one Mizuno in front of the other.