Thursday, December 29, 2011

Kindred Spirits

If there is one part of Autism that I would never want to trade in, it is the remarkable people that Autism has brought into my life.

I have made so many lifelong friends through having a daughter with Autism.  I have met doctors, nurses, therapists, speech teachers, Autism teachers, paraprofessionals, other parents of Autisic children, grandparents, uncles, and aunts of Autistic children, and so many others that have been touched by this disorder.  Some of these people I have met by chance, some of them I have been thrown together with, but many I have befriended for life.   There is just something about having a child with a disability that exposes you to the harsher elements of life, so when you find a "kindred spirit", you tend to cling to them. 

One of my closest friends has a 16 year old daughter with Autism.  I met her by chance at a dance recital.  I was the "room mom" for my oldest daughter, and she was there with her Autistic daughter, who was in a different dance class.  I noticed the girl right away, knew she was "on the spectrum".  But you can't just march up to a parent and say, "hey, is your daughter Autistic?".  I managed to start a conversation with the mom, and steered the talk towards my children, sharing with her my struggles with my then 7 year old Katie.  Once she heard about Katie, she just started opening up about her daughter, and we instantly connected.  Girls with Autism are the minority, and they have very specific differences with their abilites and disabilites.  We became fast friends, but unfortunately lost touch when she changed jobs and I changed email addresses.  As fate would have it, her daugher had a teacher that knew me, and we reconnected this past year.  Our daughters, mine now 12 and hers 16, are so very similar that it is eerie. 

This past summer we had a chance to get together with her family, my family, and the teacher that brought us back together.  Watching the 2 girls and their mannerisms, their quirks, their obsessions, their sense of humor, and their passions, was like watching 2 versions of the same girl.  I cannot describe the feeling of having someone else "know" EXACTLY what I am dealing with, what Katie is going through, what it is like as a mother in this situation.  As much as others spend time with Katie, they aren't there 24/7, they aren't there at all the meetings and doctor appointments and school conferences.  They aren't there at the end of the day after a big party, when she is so overstimulated that she can't fall asleep until 1 in the morning.  Most people see Katie at her best, or maybe even a little when she is starting to have a meltdown.  But you can't fully grasp the whole "parent of Autism" until you live it, breathe it, until it breaks your heart.  But my friend knows, and I can call her and say, "Katie is going to a school dance", and she will know that I am freaking out, and she will know why.

I don't allow myself to play the "if" game.  You know, "If Katie wasn't Autstic, what would life be like".  If Katie wasn't Autistic, then she wouldn't be Katie.  I could drive myself crazy playing that game, and to me that isn't fair to her, and it questions my love and loyalty to her.  There is no doubt that all of our lives would be worlds apart from what they are now, but if I had never had this child, what I would miss the most of all, are the friends that I have made along the way.  The friends that have helped me with my Adventures in Autism, as they have adventures of their own.

Sunday, December 25, 2011

Going to Church at Christmas

One of the very hardest things that I have ever tried to do was to bring Katie to church.  Any parent with small children can tell you that the whole "going to church" event can be beyond exhausting.  First, there is the prep work; getting the kids dressed up fancy, packing the bag of essentials, getting them packed in the car, and driving there.  Once you actually get to church the real fun begins.  Where do you sit?  Is there an easy exit strategy in place?  How long do you tough it out before leaving in a "blaze of glory"?  And don't even try to pay attention to what is going on with the service, you are too busy keeping the kids quiet and occupied and trying not to disturb those around you.  Now, add a dose of Autism and shake it up real good.

I first started taking Katie to church when she was about 4.  We would start out in the "cry room" where we wouldn't disturb anyone.  A few years later, I felt she was well behaved enough to enter the general population.  Boy, was the congregation in for a treat.  Katie caught on real quick to the hymns and prayers, and worshiped to her full ability.  Swaying side to side, signing at the top of her lungs, loudly responding with the prayers.  I didn't know if I should laugh or cry.  It was amazing that she was so involved in the service, but I am sad to say it was a bit embarrassing at first for her to be so verbose about it.  After a while, I got used to it, and grew to enjoy her style of worship (my oldest daughter, not so much).  However, Katie has a strange aversion to baptisms or special services of any kind, and will get very agitated if something different is "on the schedule".  She has gotten good at reading the "upcoming events" in the church bulletin, and skipping out on service those days. 

And then there is Christmas service.  Crowds, heat, different people, different songs, are all a recipe for an early exit.  First comes the fidgeting.  Then come the red cheeks.  Then comes the whining.  Then comes the tears.  The biggest problem is that she won't let me take her out in the hallway, because then she thinks she is in trouble.  So I end up trying to apologize to all the people around us for her being so loud.  I know I don't have to, but I feel better if people know that she is Autistic and not just a bratty kid.  I have had many dirty looks thrown my way as Katie flips back and forth in the pew, but I can honestly say, every time I have apologized and told them she is Autistic, they always become very sympathetic.  One year, she was sprawled all the way across the pew and refused to stand up for any reason.  One year she decided to spend the whole service sitting on the floor.  This year she did fine until she got hot, and decided that it was time for dinner.  So next time you see us at church, you might want to sit on the opposite side of the church, unless you want to join us in our Adventures in Autism.

Wednesday, December 21, 2011


It is a unique experience to have a sister or brother with autism.  I am sure it is that way for anyone that has a sibling with different needs or disablities.  I have never been in that position, although growing up I saw it first hand from my neighbor girls.  I have three daughters, and Katie is in the middle.  My oldest daughter had only 2 years on this earth to herself, then shared 2 years with Katie before Autism came to visit (and another sister was born).  So my oldest daughter doesn't remember life without Autism being present, and my youngest daughter never had it.  I have always tried my best to not let Autism be in charge at our house.  My husband and I have gone out of our way to create a house that reflects "normal" as best as it can (whatever normal is).  I have made a point of getting my other daughters involved in dance and sports and school, where they can shine in their own ways, instead of just being "Katie's sister".

But sometimes i wonder.......sometimes I wonder how different their lives would be, sometimes I wonder if I am doing everything I can to avoid them resenting Katie for needing more, or for taking up more of our time, or for being dragged to doctors offices and therapys and "special needs" groups.  I wonder sometimes , when Katie is crying or having a tantrum, if they sit back and watch and get angry or sad or embarrassed. Right from the beginning of this journey, I tried to explain Autism to my children.  As they got older, I would give them more informtion as they grew in understanding.  They have seen me cry over Autism, more times than I care to admit.  But I am proud to say that they have also seen me laugh over Autism.  There is a running dialogue in our house concerning Katie and her diagnosis.  We have never presented it to them as something to be embarrassed about.  I have shared some of my struggles with them, so they know why I am upset or sad, but we have also learned to find many things about Autism amusing.  Nothing warms my heart more than watching my daughters all play together, laughing as they build forts out of couch cushions, or splashing in the pool.  If I never accomplish anything else in my life, I hope to at least raise 3 daughters who love and support each other, accept each other unconditionally, and share in the Adventures in Autism together.

Monday, December 19, 2011

Welcome to my Adventures in Autism

When you are little, and you think about what your life will be like, there are just some things you would never plan for.  Little girls might dream about their wedding, maybe a glamourous job as an actress, maybe being a doctor or a lawyer or a writer.  Little boys may dream of being a superhero, or a football player, a cowboy or a policeman.  Later on, when they get a bit older, they may start to plan on houses and real jobs and raising a family.  But sometimes life takes a funny twist.  For some it may be a death in the family.  For some, children aren't possible for one reason or another.  There are many life-changing events and "plan-changing" events that can stop everything in it's tracks.  For me, it was Autism.

I was home one day with my 3 daughters, watching my middle girl interact with her teacher that the school district had sent over.  She had not started talking by age 2, and after rounds of testing, was receiving play therapy weekly.  We didn't know specifically what was "wrong" with her, until that cold day in February, when the teacher spoke the word for the first time.  "I think Katie has autism".  Game over, plans over, normal life over.  Just like that.  What followed next was a whirlwind nightmare of doctors and therapists and testing and fear and uncertainty.  She was only 2 years old, had a 4 year old sister and a newborn sister.  This wasn't in the plan.  I had plans for double prom dates and sleepovers and fighting over Barbie dolls and boyfriends.  I didn't plan for EEG's and medication and diagnoses that I didn't understand.  I didn't plan for the silence that was coming from my Katie.  She didn't look up when I called her name.  She didn't play with her sisters or cousins.  My husband and I were quickly indocternated into a whole new world.  Along the way, we drew on the strength of our faith, our families, and our friends.  And we learned to hold on tight, because the Adventures in Autism can be a bumpy ride.

Sunday, December 18, 2011

The Good Stuff

I am sure when people hear of a child being diagnosed with autism, they immediately think of all the negative aspects.  They may think of the limitations, the trials and tribulations, the long term difficulties that will arise.  I don't want to talk about any of that right now.  You can find a million books, magazine articles and celebrities that will tell you all about how hard autism is.  On a different day, I can tell you all about all of that and more. 

Autism is hard, but right now, I want to tell you about "the good stuff".  Because my Katie has autism, her heart has never been broken.  Not by a boy, not by a friend, and not by her parents.  She doesn't understand sarcasm, so she is never hurt by it.  She doesn't understand rejection, so she has never felt it's sting.  She doesn't know if people are laughing at her when she dances, so she dances like she has the whole world on a string.  She doesn't know that she is singing off key, so she sings at the top of her lungs and her heart sings too.  She doesn't know what her future holds, so she thinks she can do anything that she wants to.  How wonderful does that sound?  She belives in Santa and the Tooth Fairy, she believes in the Easter Bunny, and she believes in God.  She sways back and forth in the pews at church and sings to her Lord like it was just between her and Him.  She will always have her sisters watching out for her, she will always have her parents to provide for her and to protect her.  She has grandparents that dote on her, uncles, aunts and cousins that are crazy about her, and former teachers that miss her so very much.  She has new friends in her new middle school that accept her for who she is, and are proud to call her a friend.  Her only worries in life are about planning the next party, and when is her next meal.  She isn't too embarrassed to still watch Barney, or love Mickey Mouse.  She will never be "too cool" to give her mom a kiss good-bye, or too big to climb in her daddy's lap.  Although she wants a cell phone and a lap top, she only wants them to play with, and not because she feels that everyone has one but her.  She loves to dress up, but doesn't worry that her hoodie is from "last year", or that her tennis shoes are the kind without laces. 

If I live to be 100 years old, and I have traveled to all the places I have dreamed of, seen all of the wonders that I want to see, have a multitude of grandchildren that adore me, and money to spend on them, I will never be as happy as Katie is every day of her life.  Simple, innocent happiness. Sometimes my adventures in autism shows me that there is some "good stuff" about it that the rest of us will never have.

Friday, December 16, 2011

Letting Go

One of the hardest things for me to do as a mother of an autisic child is to let her "grow up".  I don't mean that I want her to stay small, or to act immature, but watching her grow into a teenager is the hardest thing I have ever had to do.  I have an older daughter, and when she was growing up, I had the usual sentimental pangs as she reached certain milestones.  Going to camp, starting middle school, talking on the phone with her friends, all of this I faced with a bittersweet attitude.  When it was time for Katie to do the very same things, however, I was terrified.  I still am.

Katie came home from school today and told me that there was a school dance this evening that she wanted to go.  Anyone who knows me, knows that you don't spring plans on me at the last minute.  I have to have everything planned way in advance, written on the calendar, and prepared for.  But Katie was dead set on going, she was so excited to do something with her school friends.  How could I say no?  She doesn't get the chance to socialize very much outside of school, and she absolutley loves any kind of party, or dance, or gathering of any kind.  I know most people will not understand my concern, why I am nervous and overprotective. 

My main issue is that Katie is so trusting, so friendly, and so naiive, that she might not recognize "trouble" if it is happening right in front of her.  I know I can't put her in a bubble.  I know I can't hold her hand all the time.  It is important for her to grow as a person, as an individual, to be seperate from her family sometimes.  I want her to be happy.  I want her to shine.  I want her to have real friends that want to spend time with her and call her on the phone and go to dances with her.  But there will always always always be that fear within me, whenever she is doing something new for the first time.  The fear that someone might harm her, or tease her, or break her heart.  I guess that isn't so different from the fears that I have for my other 2 daughters, but with Katie, it is fear times a million.  So what did I do?  I drove her to the dance with her friend.  I walked her in, and said good-bye.  And while I was at home, having a full blown anxiety attack, Katie was leading the whole dance in the cha-cha slide.  She was having her own Adventures in Autism.

Wednesday, December 14, 2011

Talking To Friends

Like most pre-teens and teenagers these days, Katie wants a cell phone of her own.  Knowing Katie like I do, I can tell you this is 12 kinds of a bad idea.  In the first place, she looses everything she touches in about 5 minutes of picking it up.  She will pick up the remote control, carry it around, and drop it wherever she wanders to next.  We will find random toys, magazines, socks, and stuffed animals dropped behind chairs, under her bed and in the basement.  Can you imagine trying to find a cell phone with a dead battery?  Katie takes her disappointment like a trooper, however, and makes it work for her.  She "talks to her friends" on her pretend cell phone, which is her hand cupped to her ear.  She has quite the conversations with them too.  Sometimes I forget there isn't anyone on the other line, because she asks them questions, and answers them back as well. 

When Katie goes to bed at night, she has to talk to her friends to get herself to sleep.  If we tell her to be quiet, we hear her say, "Friends, you have to be quiet, my mom is getting mad!"  Sometimes she will be down the basement for hours, talking and laughing with her friends.  Sometimes Autism can be quirky, sometimes it can be endearing.  It can be frustrating, terrifying, rewarding, heartbreaking and emotionally draining.  You just never know from day to day what  your Adventures in Autism will bring you.   

Tuesday, December 13, 2011

Everyone is Invited! (and grandma is paying)

Katie, like most children with autism, can get very fixated on a particular subject.  This week it is Disney, so start packing your bags.  She has decided that her Christmas wish is for the "whole family" to take a week long trip to visit Walt Disney World in Florida.  Sounds great, right?  Well, Katie wants EVERYONE to come, including both sides of the family, grandparents, aunts, uncles, cousins, and sisters.  And she wants Grandma to pay.  Now, Grandma pretty much gives Katie what Katie wants, but I think I am going to have to nip this plan in the bud.  I found Katie logged on to the internet, pricing out 10 bedroom houses to rent, airline fares, and weeklong Disney passes.  For 30 people.  And to make it even more interesting, she decided to invite Grandma's neighbors that she ran into at a  party.  So now we have 5 more people on the guest list.  She also has sent emails out to everyone on her contact list to invite them along, and has asked her uncle to make everyone matching T-shirts to wear on our trip.  Welcome to my Adventures in Autism!