Thursday, March 24, 2011

Looking back...

"How did you know?"..."What were the signs?"..."I thought she was born normal...what happened to her??"..."Won't she out-grow it?"... As a mother of a child with autism...these questions are all too familiar.

I can't speak for every mother...but with Addie...I didn't just "know she has autism".  It's a process.  I was in denial at first.  I think you are constantly hoping and praying that it's not your child.  You know your child is different...but you tell yourself "It's just a phase"..."she just needs more discipline"..."she's just shy"..."maybe she's a little sensitive"..."she's just hyper".  Some days I was in denial and some days I blamed myself.  The constant meltdowns and tantrums really wear you down.  I always knew she was different...but I did not understand just HOW different she really was.  Looking back I see the signs and red flags waving in the air...but in the moment I was blind to it all.  I just felt completely exhausted and alone...

At 3 months old I remember asking the pediatrician what was wrong with her.  I was concerned because she wouldn't let anyone feed her or rock her to sleep except me.  I had to wrap her in tight blankets and rock her for hours in a quiet room to get her to eat or sleep.  She was such a very sensitive baby.  The moment a new person walked in the room she would start screaming.  From day gatherings, having friends over, and public places were extremely hard for Addie.  I instinctively began to avoid these situations.  The pediatrician said "it's just stranger anxiety...some kids get it early".  Of course, I readily accepted his response.

Then it was...the vacume, the TV, any loud sounds or bright lights bothered Addie.  She would get unusually fussy, cry, and not eat.  Friends and family just said "welcome to motherhood" with smiles and laughs.  When people came over they said "oh my your house is too quiet...too've just made her used to the should be louder to get her used to it".  I began to torture Addie with loud noises to get her "used to it" no avail.  She wailed...she screamed...she refused to eat or sleep.  This was not working...she did not like loud noises....she did not like bright lights.  Nothing I could do was going to change that.  The pediatrician said "some kids are just more sensitive than others".

By 6 months old I realized that she could not function without a STRICT routine.  Going against my "free spirit" nature I had to be home by nap random naps in the stroller like other kids could do.  I had to do bedtime and bath in a certain order...feed her in a certain way at specific times.  I tried everything...some people said I needed to have her on an even stricter routine...and some suggested that she was on too stict a routine and that was the problem.  With all the pressure, I kept thinking..."it's me...I'm a terrible mommy... I am making her this way somehow....It had to be me.

By 9 months old Addie began to shake her head side to side and spin in circles.  At this point...she had started walking...she never crawled...just went straight to walking and spinning.  The pediatrician said that spinning was really advanced for her age.  So we thought she was really going to be athletic...since she was so "advanced" in her motor skills.  She would spin so much that she would fall into furniture, etc...  It seemed odd to me...the head shaking and the spinning.  I would try to get her to stop.  Constantly trying to distract her when she would get in "spin mode".  At the time...I didn't realize that the spinning was actually really therapeutic for her.

Then came the wheels.  I had no idea that "spinning wheels" was a huge red flag.  She would sit in a "trance" and spin the wheels on her toy cars...and books with wheels.  I even specifically bought books that had wheels attached to them.  It was my way of getting her to sit in my lap and listen to a story ...while spinning the wheels.

At 12 months old...I remember walking into the room in amazement...Addie had organized her blocks by color and size...I was amazed.  "She's a genius"  I thought to myself.  It was a little strange... but really amazing.  I began to notice her organizing lots of things by color.  It was really interesting but seemed really odd for her age.  At her 1 year appointment the pediatrician asked me about eye contact.  I would call her name several times...she would eventually look at me.  So as far as the pediatrician was concerned...she was "making eye contact".  But I wondered why she never made eye contact at any other time...or with anyone else but me.

There where hundreds of little odd things that I had began to notice...I could go on for hours...but the main challenge we were having was social interaction.  Plain and simple....Addie didn't like people.  She had her select 3 or 4 that she responded to...and that's IT!!  Anyone else that came in the room with her or even look at her and it was OVER.  Public places and family gatherings were becoming impossible.  A lot of feathers were ruffled...and we began to get a lot of questions and parenting advise from those around us.  We were "that family" in Walmart with the screaming kicking child...we were the ones at the restaurant that had to leave early and get "to go" just NEVER knew what was going to happen.

Her teachers started suggesting the idea of autism starting at age 2...but honestly I wasn't ready to accept it.  NO way was my child autistic.  She could talk...she could walk...she could play.  That didn't fit.  It didn't make sense to me.  Everything I knew about autism was children that couldn't communicate with the world around them.  I thought...Addie talks...but I wasn't she really trying to communicate with me?  Addie knew tons of vocabulary words...but not how to put them into sentences.  There were lots of short answers to questions...but no conversations developing.  I didn't realize that she wasn't just sensitive...but she actually had sensory integration issues.  I knew she didn't pretend play and only liked blocks...but I told myself that she was just a "tom boy".  I was missing the big picture.... and I was completley uneducated and unprepared for what I was about to discover.

By age 3 Addie was verbal enough to tell me that didn't like tags in her clothes...her shoes always had "something in them" (socks with seams)...I couldn't brush her hair or teeth...she would scream at me when I laughed or talked...she didn't like school AT ALL.  There were tantrums and meltdowns and hand flapping and spinning and the list goes on and on.  I felt like Addie was getting worse by the day.  I didn't know what to do.  Her teachers were desperate...I was desperate...what could we do??  At this point I became determined to find out what was wrong.  I knew something had been different about Addie from day 1...and it was time to find out what it was.  I was finally desperate enough to open my mind that we had to do something.

So...we had her tested again...this time everyone she met...used the word AUTISM.  Sometime after the 2nd or 3rd therapist said "she has autism"...I started to open my mind.  At first I fought it...and said there's no way...then the more educated I got...I realized there's no way she's not autistic.  I cried...I prayed...I grieved.  I went on a complete roller coaster of emotions....denial...anger...guilt...self pity...saddness...and finally today acceptance and JOY!!!

I do not know how you go through this journey without knowing who is really in controll.  It would have been an unbearable load.  The Lord lifted me up and blessed us.  Over and over we miraculously got the best doctors and the best situations for Addie to be evaluated under.  Over and over we have been blessed with the most amazing therapists and new friends.  The Lord has completely changed my life and my heart over the past year forever.  It may seem like it's been a transformation and a journey for Addie...and it has...but it's also been a journey for everyone she's touched.  Through her courage and the Lord's blessings...we will never ever be the same.  I cannot imagine my life without this journey.

I always wondered how I would ever make it if God allowed one of my children to be seriously hurt or sick or "special needs"...and now I just do.  He walks beside you and guides you every step of the way.  There have been too many miracles to count this year.  We may have lost from the world's standpoint....but in reality we are richer than I ever imagined we could be.

Looking's amazing to see how far we've come.  And crazy to think this is only the very begining...we are so blessed...

1 comment:

KelseyMoore said...

wow. another amazing blog. thank you for sharing your journey. seeing God's grace in tough situations is so amazing and you are a wonderful woman of God and mother.