Tuesday, March 6, 2012

You Think You Know Me

You may think you know me.  You may think that we have a lot in common.  Our kids go to the same school, we work together, we are related, you see me in church.  The truth is, you probably don't know me at all.  The old saying goes, "You don't really know a man until you walk a mile in his shoes."  As a mother of an Autistic child, no one ever asked to borrow my shoes.  No one ever wanted to take them for a stroll, try them on for size, wiggle their toes around a bit.  I don't mean to sound pious, or even sound "oh, woe is me".  I will be the first to admit that I don't really know you.  Even if you have an Autistic child, I don't know how your shoes feel.  Although our children may share a diagnosis, our journeys may be worlds apart.  We may have some things in common, and we may be able to lean on each other in hard times, to sympathize and empathize, that does not mean we are one and the same.

My entry into the world of autism began way before my daughter was diagnosed.  I grew up across the street from a severly Autistic girl who was about 9 years younger than me.  I used to babysit for her and her sisters.  Back then, Autism wasn't "in".  There were no celebrity moms talking about it on Oprah, no special colors or symbols to represent it.  It was basically unheard of.  For the longest time, our neighbor was said to be deaf, and fitted with hearing aids.  I don't remember exactly the journey her mother had to take for a diagnosis, but I remember a lot of rough times.  But, growing up with Autism across the street, I was familiar with the terminology.  I knew all about the "TOTE" program and "IEP's" and occupational therapy and having people stare at you in K Mart when a meltdown was happening.  I also had grown up around Down's Syndrome and epilepsy, so I knew disablities came in more than one variety, each with it's own unique set of challenges and catch words and social difficulties.  You might say I had a bit of a head start among mothers of children with disablities.  I already had been exposed to not only the daily chores and challenges, but also to the concept that life does go on after the doctor tells you those few little words.

Since I got a bit of a head start, I feel like I was able to wrap my head around Autism a little faster than most.  Nothing ever prepared me completely for having an Autistic child of my own, but the whole Autism monster itself wasn't as scary as it might of been.  Most of my anxiety and fear centered around my child herself, and fears for her future and anxiety about the trials that she would have to struggle through.  I do feel that I was lucky to have prior knowledge of the condition, so all my energy could focus on her specific needs, instead of cowering in horror from a "great unknown".  Don't get me wrong, I was devastated.  I saw my neighbor struggle and cry and worry, but I knew that there was still a path ahead of me instead of just seeing a door slamming shut. 

Another advantage that I have had on this journey has been having a husband to help me along the way.  I know so many other moms that have either been single, have become single because of a diagnosis, or have had unsupportive husbands.  I am not saying I am better than them, but I do feel blessed that I have not been alone with this.  Every doctors appointment, every school meeting, every meltdown and report card and first word and smile have been shared with my husband.  He has been my daughters biggest supporter, and my biggest supporter.  After a horrifying 2 week experience with sensory integration therapy, I came home to the most beautiful bouquet of flowers, with a note that I still carry with me every day.  In it he thanked me for all that I had done, acknowledging how hard it had been, and saying how much he loved me for caring for our daughter.  He has made all the difference in the world in raising an Autistic child.  There is nothing that I cannot share with him, there is never a time that I am ashamed to cry.  I can be totally honest, and open, and have not had to worry that he is going to judge what I say. 

In some ways I think that Autism has brought us closer together, has made us better parents to our other children, and has allowed us to appreciate the little things in life.  Going out to dinner as a couple was unheard of when our kids were small.  I was afraid to leave too much of a challenge behind for a babysitter.  I only felt comfortable having the grandparents watch the girls, but didn't want to take advantage of them since they did so much babysitting while we worked.  Attending a wedding reception or recognizing our anniversary were about the only "outs" that we tried for awhile.  Eventually it got easier, and when we were finally able spend time alone, it felt like a miracle.  It took me a long time to figure out how to really relax,  but those times out were amazing.  It didn't matter if they lost our dinner order, it didn't matter if the movie theater was crowded, it didn't matter if we had to drive through a snowstorm.  We appreciated every moment of our time together.  At the lowest point of my Autistic journey, my mother told me that me and my husband needed to go on a vacation, just the 2 of us.  I didn't think I could do it.  I was so overwhelmed, so sad, so desperate, but both of our parents helped watch the girls, and we went.  That was the shot of adrenaline I needed to keep myself going.  Till this day, I feel that every vacation is a gift, even if the whole family is there.  Every plane ride is magical, every fast food restaurant is a miracle, every hotel room is the Plaza.  You will not hear me complain that the room is too small, or the dinner took too long, that the sun is too hot, or the wind too cold. 

My 3 daughters are my everything.  Katie, my daughter with Autism, is the middle daughter.  My oldest daughter has been blessed with beauty and brains, wit and charisma, and has athletic ability that makes my head spin and my heart proud.  She has used her gifts and talents to entertain the world, but has also been burdened with the responsiblity of being the older sister and mentor to her younger sister with Autism.  I told her from the start, as soon as she could understand, all about Autism and what it meant to us as a family.  It has not been easy on her.  Her sister has embarrassed her, but also loves her unconditionally.  There have been things missed out on, she has been shuffled aside, but at the end of the day I always touch base and let her know that Katie is not more important, just more vulnerable.  I do not spoil my oldest daughter, but I also do everything I can to make her life as magical as I can.  She has also developed into a confidant to me, since she can see what Autism does, she understands my range of emotions as well. 

My youngest daughter was born at the exact time Autism came into our world, so she does not know any other way.  She grew up with Katie, sometimes hitting the same milestones at the same time.  She knows Katie more as a playmate, sometimes as a rival, but always as a loving sister.  She is definately the baby of the family, and I would love to keep her that way.  She is the sweetest, most loving child, and the first thing she will do when she sees her grandpas is crawl right up on their laps.  She is aware of Autism, more so than most, but she knows it more of an excuse her sister offers up to get her way, instead of really knowing it for its lifelong limitations.  For these reasons I protect her, try to keep her innocent, and try to stretch out her innocense as long as I can.  If that means that she has a million stuffed animals and dresses and dolls, then that is how I try to keep her childhood as pure as if Autism never affected it. 

There are no two mothers of Autistic children that are exactly alike.  Although we may share in each others journeys and appreciate the obstacles others encounter, our paths are not identical.  We arrived at this destination differently, we handle our challenges differently, we have different support systems and different roadblocks along the way.  With that being said, these mothers are also the ones that know me the best.  I have lifelong friends and loving, attentive relatives that do not know me as well as these moms do.  That does not mean that others who don't know Autism intimately, that they do not love me and Katie and my whole family.  They do, they overwhelmingly love us and support us, and we appreciate every prayer and hug and listening ear and kind gesture.  I do not ever want to undermind how much my family and friends love us.  But do they know us?  Do they know me?  Do they really know me?  Since I have started this blog, I have given everyone a brief, tiny glimpse into our lives.  Hopefully it will help others understand a little bit of what we deal with, and answer some questions as to why I do the things that I do, what is behind the decisions that I make.  I will never be able to paint the whole picture, and I often wonder, on my Adventures in Autism, if anyone will ever truly know me.

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