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THE Moment(s)

2/1/2013

4 Comments

 
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It was a beautiful Easter Sunday morning. THE holiest of holy days for Christians. I’m in church with Dan, Kyle, Ryan and my family at my parent’s church. The service has begun and the choir is singing. Proud mother that I am, I have my boys dressed in their Easter Sunday best? (See picture...like you could miss that face in that hat). Looking back, I wonder if perhaps dressing Ryan in this hideous 90 year old man outfit may have been ‘the trigger”.  Autism experts believe genetics play a role in autism along with perhaps an environmental factor that “turns on the gene”. As a mother who carried this child for 9 months you look back at everything you ate, did, exposed yourself to, etc. trying to convince yourself you were the perfect pregnant mother and certainly there was nothing you did to cause this, right? Maybe it wasn’t the flu shot I received before I knew I was pregnant. Maybe it wasn’t the asbestos removal that was going on in the school I was working in or a virus or vaccinations, or my college years.  Dear Lord, maybe it was this hat?!! Perhaps dressing him like a grumpy old curmudgeon actually turned him into a grumpy, old curmudgeon. A mother’s guilt does all kinds of crazy things to one’s brain and heart.

Picture
I’m not sure what “turned on Autism” in my boy and I’m not sure why on this beautiful Easter
Sunday morning it all clicked for me. Could it have
been the music, since Ryan is so musically gifted, or maybe it was boredom in part that caused this cataclysmic moment? I will never know why it happened, but I can share what happened. In the
middle of the choir’s song, my little man, who at almost 2 was still not really conversing as much as he was parroting, says, “A, says ahhhh or aaaaa as in apple or ape wheeeeeeetttt”. WTH? As I’m trying to stuff a handful of Cheerios in his mouth to shut him up in the holiest of places on this holiest of days, I’m thinking, “What was THAT?”. Then I knew, figuratively and literally. I knew what he was mimicking and in that moment I also knew there was something more to this parroting thing. This unconventional outburst was the exact phrase and the EXACT sound the eraser makes on his favorite toy, the Leapfrog Phonics Writing Desk. I hate that stupid toy.

Maybe this wasn’t what you were expecting, no hand flapping, no spinning, no loss of
vocabulary, no horrific tantrum at Toys r US, no "who's on first" recitation, just a strange mimic of a toy in an odd place at an odd time. I knew. I had been looking online convincing myself of all the signs of autism he didn’t have and making up excuses for all the quirks he did. In that moment, when I should have been focused on Jesus’ resurrection, I was trying not to vomit, trying not to fall apart and finally realizing Dustin Hoffman really deserved that Academy Award. All I could think of was “He really is Rainman.’ The hundreds of times I repeated, “Kmart sucks”in a monotone voice were no longer funny (although Ray did have that right).


As I tried to pull myself together and listen to the ultimate sacrifice Jesus made for us, all I could think was, “Will he be able to live alone?”, “Who will take care of him when we die?”, “Is it too much of a burden to ask Kyle to care for him?”, “If someone says the words Group Home and I break their nose, how much time will I spend in jail?" (anywhere from 2-10 years depending on "the degree of harm"). All of that in the time it took for the choir to finish a hymn. My brain is a wonderland.


My. Heart. Was. Broken. Mother’s intuition. We know by looking at their eyes they have a fever, we can tell by the cry if it’s frustration or pain, we can tell by their voice if they are lying or telling the truth. How did I not see that my son was autistic? Denial? Absolutely. Apparently, I was not being AWEnest yet. It didn’t help that many of the internet websites with all the “signs”said kids with autism don’t show love. I looked at my perfect little old man snuggled up against me still trying to pull the excess Cheerios out of his mouth. Without a doubt, he knew love.


I didn’t immediately leave church and schedule an appointment with a developmental pediatrician (those who know my neurosis will be amazed), but my son’s quirks weighed heavily on my mind that day and for the days to come. Denial is an amazingly strong emotion. We can have something staring us right in the face and make up an excuse that suits the outcome we wish for and convince our brain it is so. I’m pretty sure my crazy, neurotic brain was trying to save me from heartbreak. And of course any time you go online for a quick diagnosis of any kind (some days I curse the internet) and you Google autism, or cancer, or swine flu, etc. the articles aren’t typically cheery which sent this crazy mother spiraling downward deeper and deeper, but in the battle between denial and acceptance, denial was still winning.


Sometimes, even in the face of denial, when our worry becomes too great there is a turning point. Most of us don’t recognize it when we are in the moment, because denial has it’s dirty claws dug in deep, but we can look back after a period of time and go, “Oh yes, now I see”.


Funny how my “ah-hah” moments were in the least expected places. Church and the
Toyota service center. I had to take my 4Runner in for service a few weeks after "The Moment".  It was a quick service so armed with snacks, toys, books, etc I took the two boys with me. Well, it wasn’t long before Ryan made it very clear he was unhappy at the service center. Out of nowhere (or so I thought) he would start screaming and covering his eyes. I mean screaming like “everyone is looking over the top of their magazines thinking shut that kid up screaming”. Being the clueless mother that I am, I thought, well, that’s just weird. And as quickly as the screaming began, it stopped. Finally, after about the 5th time this happened, I said aloud “What’s the matter baby?” and big brother Kyle said, “He doesn’t like when they call for someone over the loudspeaker." Holy crap, he was right! Every time someone at the service center announced a telephone call to staff over the intercom, he would scream hysterically and cover his eyes. It was loud, but why on earth was he covering his eyes, not his ears? And AWEnestly, that is what freaked me out the most. And of course the fact, that Ryan’s 5 year old brother was more aware of what was effecting Ryan than I was. I swear, Kyle has been a gift to his brother. Maybe birth order doesn’t suck after all.


I left the service center and ended up in my girlfriend’s driveway sobbing hysterically. “There is something wrong with him, I know it!”I sobbed. She soothed me and talked me off my cliff as she has so many times over the past 18 years. They should come up with a civilian Bronze Star Medal, because I have a loving husband (God bless him for putting up with my crazy a**) and quite a few patient girlfriends that have pulled me out of the trenches of despair, heartache, and worry in this battle of autism that are so worthy of having that medal pinned to their chest.


For the readers who know me, they know I am a total hypochondriac. Constantly worrying about the latest disease, virus, nuclear threat, asteroid or any danger to life or limb. Maybe once again, this was my over-active, definitely donate to science, brain on overdrive again. So when I told my family and friends that I was worried Ryan had autism, they all laughed,“yeah, sure he does”. Aferall, he didn't flap his arms, spin in circles, or scream "hot water burn baby" and for most people, that is autism. Not to mention I was the girl who always cried cancer, Lyme Disease, West Nile Virus, shark, and now I was crying autism and just like the boy in Aesop's Fable who cried wolf, the villagers didn't believe the "wolf" had actually touched this family. Not at first…




 
4 Comments
Lisa
2/1/2013 09:33:47 am

You forgot to mention skin cancer:). I love reading this. It is as we are time traveling backwards through your journal with you.

Reply
Jeff Stephenson
2/1/2013 11:10:09 pm

Once again you take us down the path of AWEtism with the realism, emotion, heartache, happiness and the other rainbow of emotions you face. The AWEsomeness of your strength, your family and those good Red Raider buds as well as those from the capital city area show no limitations. I feel like I'm sitting right beside you and Dan through your writings. Your efforts are AWEinspiring. Bless you and your wonderful family.

Reply
Vicki forsht
2/3/2013 12:31:20 pm

Reply
Dianne L
2/5/2013 04:58:32 am

You are a gifted writer. Thank you for taking us down this road with you. It helps me feel much less isolated!

Reply



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