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The Comparison

1/30/2013

4 Comments

 
Picture
Kyle had such an easy entry into the world. Even his hair didn't get messed up.

Picture
Sweet Ryan. His head was big and it's evident it was hard entering this bright, loud,
scary world. With that head it was no picnic for me either.

As parents, we promise we won’t do it, especially if we have siblings
(especially if we had a “perfect” sibling) because our parents did it to us and
we hated it (unless of course you were the “perfect” sibling). And just like our
parents, we fail. From the moment we feel the first flutters of baby number 2,
the comparisons with the brother or sister that came before them begins. Birth
order sucks.


Poor Ryan. Had he known what it would be like to follow in the foot steps of
his big brother Kyle, whom to this day I call, “Angel Boy”, he probably would
have opted to stay in the womb. Kyle is 3 years older than Ryan and honestly he
came out perfect. Beautiful thick black hair that the nurses continued to comb,
brush, gel, etc while in the nursery. He was calm and peaceful and he continued
to have a happy disposition until the teen years. I fell head over heels in
love.


When you find out you are pregnant with your second child, your first
instinct is sheer panic. How could you possibly love another child as much as
the first?! As every mom with more than one kid knows, there is enough love in
your heart for each and every child, however, try telling that to a huge,
hormonal 9 month pregnant woman and you may get knocked on your a**.


Ryan came out of the womb angry and when I say angry I mean pi*#ed off. 
Maybe it was a rough entry since he came out all red, blotchy and squished. No
beautiful black hair on this boy. He resembled his father’s baby pictures
(large, round, bald head…think Uncle Fester) which I had always abused him
about. Which was why it was funny when his still large headed father said, “Wow,
I sure hope he shapes up!” If I’m being AWEnest, he was not a cute baby, not at
first anyway, but, oh how I loved that squishy faced boy. Even when the
lactation consultant compared his incredulous "latch on" strength to a barracuda
(Wiki says "Barracudas kill and consume large prey by tearing chunks of flesh."
Sounds about right) my love did not falter.


For a kid with sensory issues, the womb was probably the happiest place he
has ever been…dark, quiet, alone. Good thing he can’t remember (at least I hope
he can’t) or he may start researching the possibility of going back. He weighs
92 pounds and is almost as tall as me. Need I say more?


My nickname for Ryan (along with Zoot, yeah, Angel Boy and Zoot…he doesn’t
seem to mind since we have no idea what a Zoot is) was “fussy baby” because
compared to Kyle who rarely ever cried, whined, etc. he was fussy. My friends
with colicky, screaming babies all hated me as I used this term for Ryan because
he truly wasn’t “fussy baby” he was just demanding. Once he got what he wanted,
fussy baby was happy. The problem was figuring out what he wanted.  In some
ways it still is today.


All the autism websites (believe me, I’ve seen them all many, many times)
list various traits for autism in infants. They may arch their back to avoid
touch, they may make little to no eye contact when being fed and often there is
the “absence of normal development”. Ryan was snuggled and cuddled all the time.
In fact, I’ve been accused by friends of being pregnant for two years since I
carry them in my womb for 9 months then carry them in my arms for the next
year.  Ryan did not arch away from my snuggles, but rarely did he wrap his
chubby arms around me.  He always looked and smiled while I nursed him,
but, he was most content when he was in his crib with his musical toy…alone…not
being snuggled or fussed over.  Sorry Dr. Richard Ferber, your methods were
not needed for this boy.


Some parents with autistic children describe a normal development and then
almost over night, the child regresses or as some parents say, their child
“disappeared.” This was not the case with Ryan. The first sign (which of course
at the time we didn’t know was a “sign”) was actually hysterical. Being the
fabulous parents that we are, instead of recognizing it as a problem, we laughed
and called our sweet boy “Rainman”. (Is anyone contacting CYS ?)  When I
would carry Ryan down the steps, he would mimic to a tee the noise of my feet
hitting each and every step “eh, eh, eh, eh…”. We now know he has perfect pitch,
a rare feat in the neurotypical world, but not so much in the world of autism.
Chances are, those “eh, eh, eh, eh” noises were identical to the sound of my
feet hitting the steps and he could vary the sound and pitch perfectly depending
on if I had on Nike’s or Jimmy Choo’s (I don’t own Jimmy Choo's, but thought it
would be nice to pretend for a minute). “Rainman” was mean, but AWEnest and
accurate.


Along with this uncanny mimicking skills, Ryan’s speech was“off”. Of course
when “Angel Boy” brother was speaking in full sentences at 12 months, anything
later would seem “off”. No problems saying words, he just sounded more like a
parrot than a boy. The correct term for this is echolalia and it is typical for
early speech development, but Ryan’s was extreme and went on much too long to be
considered “typical”. To this day I still say “want for snack?” when I ask the
kids what they would like for a snack. I don’t know if it’s endearing or if it’s
PTSD. Honestly, EVERY time I would say, “Ryan, what do you want for a snack?" he
would never say what he wanted he would just respond with “want for snack”. At
first it was cute, then after the 10th,“No, what do YOU want for a snack?”, and
he responded with, “No what do YOU want for a snack?" (exact same intonation) it
became infuriating and I distinctly remember a moment when I was banging me head
off the pantry doors and praying the men in the white suits would come take me
to a comfy padded room.


My little parrot could recite and mimic every Thomas the Tank Engine episode
he had ever watched (including the facial expressions which was kind of creepy),
he could count to 30 by the time he was 18 months old and on his second birthday
when he got alphabet magnets he knew every single letter without any of us ever
teaching him. “Wow, he might be smarter than Kyle!!” If that’s the case, then
Ryan must be gifted!! I began wondering if it would be Harvard or Yale. Our very
own Einstein, whom by the way, experts now believe probably fell somewhere on
the autism spectrum, but during those days, you weren’t autistic, you were a
genius.


Eventually, the comparisons were no longer just between Kyle and Ryan, but between
Ryan and all the kids in his daycare, neighborhood kids and my friends’ kids.
The gap was getting wider and wider and I was becoming crazier and crazier.
Crazy and Google are a VERY dangerous combination.


The moment I knew….


4 Comments

The Well Visit (aka, The Hell Visit)

1/24/2013

20 Comments

 
The 11 year old well visit was one for the record books. I would have sworn that the days of holding my child down for vaccinations would have ended well before the near onset of puberty, but alas, my son has never conformed to typical expectations so why would today be any different?

Is it wrong that as three adults huddle in the corner of the exam room in an attempt to hold down my 92 pound son for two vaccinations that instead of crying, I am laughing? Not at his obvious horrific fear and uncontrollable sobbing, (that would make me a monster, right?) but at his proclamations of a conspiracy between his mother, who loves him more than she ever knew possible, and our beloved pediatrician who has pioneered this journey for us.

His protest of the alleged conspiracy, of course, was screamed at ear damaging decibels for all the other children in the doctors office to hear, tremble in horror and attempt their own escape. Who wouldn't, with blood curdling screams of "I know  you are poisoning me with toxic chemicals", "Someone help, they are trying to kill me", and "I know I'm going to die!"?! Come to think of it, the waiting room was completely empty when we left.

After we picked ourselves off the floor and shook the ringing out of our ears,  we made our escape. My son began speaking in some slow motion robotic voice I had never heard before (he later explained he was talking that way because his body felt slow and heavy, and because he thought he was dying).  Of course, neurotic nut bag that I am, worried that maybe this was one too many doctors appointments and that his beautifully unique and fascinating brain snapped. I thanked the staff with a big smile and promised all of them hearing aids instead of a Christmas card next year. I'm sure we were the talk of the lunchroom.

Needless to say I could not drop him off at school immediately as I was certain his teacher would believe he was having a seizure or some other neurological problem due to his newfound robotic voice. After about 20 minutes at home with his iPod Touch and his Furby, he began speaking Furbish at a much more normal rate of speed. His brain appeared to be intact. He was back to his old self so off to school we went. I was still smiling as I left the school.

Laughing and smiling, my girlfriend has assured me, is what has kept me from a nice white padded room. Its been 6 years since I heard the official PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) or High Functioning Autism Diagnosis for my beautiful boy. I remember the exact words the wonderful psychologist said as she finally confirmed what I had feared since he was 2,  "He is the same little boy he was before you walked into my office", but it felt like everything I had dreamed for him up until that moment was gone.  It took me many years, many, many tears and many, many, many curse words and near breakdowns to believe her. And on the occasional days where there doesn't seem to be a curse word worthy of my frustration, enough tissues for my tears or enough encouraging words for my guilt and self doubt, my belief tends to falter.

In this world of Autism that we have become reluctant inhabitants of, I realize I am blessed beyond compare. Many kiddos on the spectrum have much bigger struggles than my boy. Certainly there are times I could care less about those other families as I get caught up in an ugly battle over homework since he no longer likes the "sound of paper" (thank God for technology).  On most days, however, I embrace my son's differences and realize that he has opened my heart and mind to a beautiful way of seeing the world that I never would have known existed had he not been diagnosed with autism.

That is not to say it has been an easy acceptance. I have had some ugly heartbreaking moments trying to understand that what makes me happy is not necessarily what makes him happy. That when classroom assignments are mailed out every August, and not one kid calls to see what classroom he is assigned to, the heartache is mine, not his. When he proclaims to have no friends and swears "it doesn't make me sad at all"  that he might just mean it.

In an article I read a few years ago, a mother was asked if she could take away her child's autism would she do it.  She said no because it would change who her son was. I love my son for who he is and think he is utterly perfect, but I think that mother is full of sh*#! Autism is a part of my son, some days a bigger part than others, but wishing he had friends, wishing it was easier for him to put his feelings into words, and wishing he didn't feel " like an idiot" does not mean I don't love my son for who he is, it just means I'm honest. Some days I (insert expletive here) hate autism, some days I'm in awe of it. Just like that bullsh#% mother, I want the world to see past my son's quirks, his odd facial expressions and his aloofness to the enormous hearted, funny, compassionate boy that hides from societal norms because he doesn't understand them.

I have entitled this blog, The AWEnesty of Autism, because most days I am in awe of my son and his unique brain. However, I am going to be honest (AWEnest, sounds like honest get it? Kind of witty, right?) about the way autism effects my son and my family. The good, the bad the ugly.

I know, I know, another stay at home mom who thinks what she has to say is so important and worth reading. Oh wait, her kid has autism so that makes what she has to say even more important! Chances are only my friends and family and maybe someone who owes me money will read this blog. On the off chance that another mom with a kiddo on the spectrum reads it and "gets it" then that will be a bonus.  I have learned more in a waiting room of other moms whose kiddos are as quirky as mine than any books, therapists, and psychologists combined.

This will be a keepin it real blog, not a preachy going to beg you to put a blue puzzle piece or an autism awareness ribbon on your car. BTW, I don't have either and that doesn't mean I don't care or I'm unaware of autism, I just think it draws more attention to my "yes, I'm over 40 and no longer have a cool car." I drive a mini van (another one of those stay at home mom prerequisites).

For the most part, my life is like everyone else's. Running kids to and from activities, wondering why we ever stopped wearing leaves for clothing as I constantly forget the wet clothes in the washing machine, and trying to keep our home running in a fairly organized fashion. Oh, and most importantly, never, ever, ever running out of Jello Vanilla Pudding or Vanilla Oreo Cakesters because the world, or at least my son's world would come to an end.

How could I have possibly known the extreme importance that the Jello and Nabisco corporations would play in my life when the doctor placed that squishy faced screaming baby boy in my arms 11 years ago?!  And how could I have known that in those early days when my son mimicked the sound of my footsteps as we descended our stairs and we laughed calling him our Little Rainman, that one day that nickname wouldn't be so funny.

And so our journey began.....
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