Thursday, March 31, 2011

Learning a Foreign Language...

I've learned more in the past year than I ever cared to.  I never knew becoming a mom was going to mean that I needed a masters in special education or child psychology.

The first time I stepped foot in a parent support group meeting.  I opened the door to this "foreign language".  ABA, stimming, IEP, CAP, evals, OT, AU, inclusion, PRT, RTI, TEACCH, PDD, AHHHHHHHHH!!!  I was completely overwhelmed.  How could I possibly help my daughter when I don't even know what they're talking about.  These moms seemed like they knew more than the therapists did.  I had never heard of half of what they were saying.  I was just nodding my head and trying to act like I understood...but my stomach was sinking and my head was swimming.  I felt like the worst mommy in the world.  I just went straight to my car and cried.  It was a raw moment..."God... why o why did you give me a child like this...I don't know anything about this stuff...I hate to read...I don't like doctors...I don't want to have to learn all this....I am completely unequipped to take care of her....I'm clueless....I CAN'T DO THIS!!!"  As I sat there in my car in tears screaming at God....I felt Him quietly say..."I know you can't...but you are not alone...I will equip you...I will give you the strength"....And He has...

The first few evaluations...and therapy sessions...I had to take notes writing down ever word I didn't understand and go home and research it.  "Addie has some fine motor skills delays" ok..stop...what are fine and gross motor skills??   I mean who has heard of this stuff??  Pragmatic language skills...cognitive thinking...sensory processing...adaptive was all new to me.

I began researching and reading books...making notebooks and journals of our appointments...taking my huge stack of papers to evals and observations.  I felt like I was never going to learn everything I needed to know.  After many tearful car rides home...I gradually began to feel like I was understanding what was going on.  But it is such a huge learning curve.

Today we had our IEP meeting with the school system.  It was emotionally draining listing all the challenges Addie deals with every day...and listening to the detailed observations of the therapists.  "she doesn't interact with her peers...she doesn't play...she wanders around the room...she doesn't like to be touched...she lines up the toys...she screams at the girls that were asking her to join them" heart didn't want to hear it.  But as the meeting went on...I had a peace about this room full of experts and educators that are all trying to figure out what Addie needs.  It brought a new meaning to "it takes a village" to raise a child.  When they asked what were my concerns.  At first I didn't know where to begin...I could go on for hours.  But then I remembered...I was prepared...I had read the Wrightslaw website...printed sample IEP's...and written my own goals for Addie.  About 1/2 way through the meeting...I realized that I understood everything they were talking about.  I was able to offer information that they were able to use to help Addie.  I was able to advocate for her and contribute.  I have never been so thankful. "This is not me"...I kept thinking..."I'm not good at stuff like this"....but here I am...somehow I have begun to understand this crazy foreign language and I didn't even know it.

I stand in amazement of the veteran mommies that KNOW.  I'm still only just beginning to understand this "foreign language".  They have been through so much to learn all that they do.  Their stories and experiences are priceless and inspiring.  God has lead me to some wonderful mommies and therapists. They have taken me under their wing and taught me so much more than any book ever could.  Their help and personal experiences have changed our lives in ways I could never thank them enough for.   Mom's that have children with special needs may not have ever wanted to know all that they know.  But be assured that they do.  I feel like I am surrounded by some of the smartest...confident...and BLESSED mommies.

I started this process completely overwhelmed...unconfident...scared...full of guilt...and alone.  It's still only the begining...but the Lord has blessed me so much with the perfect people in my life and the knowledge about autism.  It may not be what I signed up for...and maybe I never thought I would understand this "foreign language"....but I wouldn't trade it.  I hate that question..."don't you wish you had a switch you could flip and make her better?"...are you crazy?? NO!!  Then Addie wouldn't be Addie.  I love her just the way she is today...and I can't wait to see the woman she will become.

Addie shows me everyday what it is to be brave, smart, and confident.  The world is such a hard place for her...but she keeps smiling.  We all think we are helping her and teaching her....but I really think she is the one teaching us...

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...

Sunday, March 13, 2011

Welcome Back Addie

I'm  sprinting through the emergency room doors... the hospital construction blasts.."clunk...clunk...clunk".  Addie is totally limp on my shoulder and doesn't even bother to cover her ears or scream about the loud noises.  My heart was sinking into my stomach in knots....I knew she was in trouble!! 

As we made our way through the bustling waiting rooms...and the constant "beeping" and frenzy of the ER...Addie never complains...not even a peep.  Addie laid still while they started her on an IV...examined her...poked and prodded...I stood by her side...watching in absolute HORROR as she barley whimpered.  By this point I am an emotional WRECK.  The nurses are trying to calm me down by saying..."look she's fine...she's not upset...its ok".  This only made me more hysterical. "You don't understand...she doesn't even let doctors near her...she shrieks in terror when they walk in the room...she is deathly afraid of beeping....something is REALLY WRONG here". It is one of those moments as a mother that I will never forget.  I have never wanted her to throw a trantrum so bad in my life.  Where was my beautiful screaming kicking little girl??  

I was completely terrified for the first hour or so.  Saying countless prayers.  All the sudden...The Lord answered.....her IV alarm went off beeping like CRAZY!!  Addie began faced... hands over her ears in a total panic.  A wave of relief flooded me.  Thank you God...thank you....thank you...she is coming back.  After another hour or so...she started asking..."what's that noise...what's that noise"...then the nurses start acting concerned "how is she hearing all that? is she ok?"....but I knew this was normal was a HUGE relief.  She asks me this a hundred times a day and sometimes I even get annoyed at her persistant questioning...but I realized in this moment that I wanted her to ask me a hundred million times more.  

We stayed in the ER most of the day...waiting for a room....she was so brave...through all the beeping...loud voices...booming intercoms..needles...x-rays...and frightening trips to the loud public bathroom...we were struggling through in a near constant MELTDOWN.  The ER is a horrible place for any child...but throw autism in the mix and we have a combination of total disaster.  Please Lord...give us a quiet room quickly....please.

The doctors finally came and took me in the hall saying..."we know she has autism and we can see how upset she how do you think she's going to be upstairs because we have a lot of sick kids...maybe she would be more comfortable down here until she relaxes a bit".  It took me a moment to comprehend what they were saying...they were afraid she was going to have fits and be too disruptive??  What were they thinking??  I wanted to scream.."are you CRAZY...she's not just going to relax in this crazy place".  Instead I calmly told them...Ok here's what I need for her to "relax"... I need a private room with its own bathroom in a quiet place...the nurses and doctors need to talk in quiet voices...prepare Addie for everything...give her time to process what they are saying before they touch her...and give a time limit to their poking and prodding (like lets count to 10 then we're done)...then follow with a reward.  After this flew out of my mouth I was shocked...all these countless hours of education and therapy have actually taught me to help Addie.  I didn't even know it was in me??  Addie was somewhat calmer and the doctors were truly greatful....thus began her slow recovery.  

As Addie walked around her hospital room...she nonchalantly shuffled across a very patterned tile floor.  The nurse says "wow...looks like she's doing great".  But I knew better....Addie never steps on the cracks.  I knew she was still really really out-of-it.  As time passed....The Lord answered my prayers magic....she began carefully navigating the floor avoiding each crack...stepping in the center of each tile.  I winked at my husband...we both were a little teary eyed.  Now this was our Addie.  This time the nurse looked concerned...but we just smiled and said "now THIS is normal".  

Thoughout our time at the hospital Addie slowly came back to us.  The more people that started giving me those confused...mildly offended looks...the more relieved I became.  At first one of the nurses commented "she's the best patient on our hall"...the next day the same nurse walked in and Addie screams "AHHHHH nooooo....I dont want you".  The nurse looked shocked.  I just smiled...It may sound strange to others...but I was glad.   Then the machines...."what's this machine do...what's this machine do" (talking about her IV pump, etc...).   So we talked for hours about every detail of each machine and how it works and what it was doing....explaining over and over every button and every part.  Next, Addie began looking out the window in her own little world...hours picking out all the cars in the parking lot that "matched" (amazing how accurate she was)...and wanting to know all about the machines outside (air conditioning units).  Addie was coming back...

I guess you could say she was going from everyone else's "normal" to Addie's "normal".  I have never been so grateful to see her avoid the cracks, scream at people when they came in the room, squirm and squeel when I tryed to fix her hair, push me away when I tried to hug her, and start telling everyone about all her machines. This was music to my ears.  

This has been a unforgettable week.  I learned so much watching Addie's journey back.  All the little things that others may see as quirks or "autistic like" behaviors are really just Addie.  I wouldn't want her to be any other way.  Those little things are what makes her...her.... and I love them.  I missed her so much when she was acting "normal"...because it wasn't normal.  It wasn't Addie.  And to me Addie is normal just the way she is.  

What a journey in my heart.

Welcome back Addie!!

Tuesday, March 8, 2011

Walking the red line...

Every morning we walk the red line with Addie...

"Is the flag out? the flag out? the flag out?"...Addie is shrieking from the back seat. Every morning at 8:50 the "welcome" flag is put out at her school....and we can start our journey inside.  It is truly a journey.

We walk towards the doors silently...trying to stay as calm as possible.  I can see that she's deep in thought...trying to hold onto her lunch bag and navigate across the street.  I'm praying urgently and silently that no one will to talk to us...

All the sudden...."HELLLOO ADDIE"...her preschool director booms with her loud southern drawl.  Addie immediately covers her ears and begins to crumble...."nooooooo don't...ahhhh".  As if her booming voice wasn't enough...she proceeds to pat Addie on the head and say loudly "I LOVE YOUR SHOES ADDIE".  In my head I'm thinking "stop...stop....ignore us...what are you thinking??...please please dear God ignore us".  Secretly wishing I could scream....I smile at the director and try to calm Addie back down...

After finally coaxing Addie through the doors... we see the RED LINE...HER red line  "Stay on the red line... on the red line...on the red line"...Addie chants as she walks down the hall...every footstep carefully on the red line in the middle of the hall.  Amidst all the commotion and "hello's" and shoulder brushes as kids rush by...Addie looks down and chants about the red line trying to cope with it all.  But with every "HELLO" and passer by...she falls apart even more...her chanting gets louder & louder...."stay on the red line...STAY ON THE RED LINE"....I silently march behind we get many confused looks...

Then IT happens!!  Someone is standing in the middle of HER red line.  In tears...she drops her lunch bag...she begins SHRIEKING and flailing.  The mom on HER red line continues to chat to another mom...oblivious to what is happening...chatting about playing tennis or getting her nails done.  I wanted to scream...but instead I apologized... and after giving me a confused and mildly offended look...she finally moved.

And thus we proceed... "stay on the red line....stay on the red line"...we chant all the way to her class.  Finally we made it to the door....and now to begin the challenges of taking off our coat...putting away our lunch...washing our hands...and joining a classroom of kids darting this way and that.  It's a process...and a journey... I definitely have to pray myself through every morning.

Some days it's tough to get to my car without falling apart myself.  Driving to work in tears...I think about how hard it is for her...or I start to feel sorry for her...or guilty for not being able to "help her" more.  But then I remind myself that the Lord made her just the way that she is.  He made her that way on purpose.  She is perfect and made in His image.  She works so hard to do the things that come naturally to her peers. She is my inspiration and I'm SO proud of her.

Walking that red line every morning with Addie is an adventure.  It can be smooth sailing or gut wrenching or ear piercing.  It's just one small part of our day....but it's a glimpse of the challenges that face those touched by autism.

What seems like normal everyday experiences to most people can be completely assaulting to someone like Addie.  It could be a tag in their shirt...or a wrinkle in their sock...the lights could be buzzing...the wind could be blowing...or they may just not want you to look at them.  The world is FULL of confusing sensations.  I may never fully understand...but I don't have to.  It's Addie... and that's what makes unique and perfect little girl.

Addie is already so much stronger than I could ever be.  Her days are full of challenges...and she continues to amaze me with her triumphs.  She truly inspires me and I will proudly walk that red line with Addie every day.

Saturday, March 5, 2011

My Little Butterfly

"I have to be a butterfly...I have to be a butterfly...I have to be a butterfly"....And thus we began the day once again with Addie the butterfly.  It's the complete monarch butterfly costume...with wings of course.  Wiether it's the grocery store, school, or grandma's house...we've been many places as a "butterfly".  We may get some funny looks...but I think she looks beautiful.  

I'm not sure what it is about butterflys...but Addie absolutely loves them.  She comes alive when she talks about them....sees them...or draws them.  She is 3 years old and knows the complete life cycle of the caterpillar to chrysalis to butterfly.  She knows how long the wings are wet when it comes out of it's cocoon (or she would correct me)...she knows the difference between a butterfly and a moth.  It's her obsession...but it's my metaphor for our journey.  

Like many Americans...we began 2010 with "healthy" children (so we thought)...great jobs...and a wonderful home.  We ended 2010 with two special needs children...lost home...and huge medical debt.  The past two years have been a journey...down into a deep pit and crawling back out again.

I have always known that Addie was different.  At first I was in denial that it was anything other than "being shy"...or just unusually sensitive.  Over the past year we have gone to countless evaluations and therapists.  Over and over we have been given the diagnosis of autism.  At first it was completely heart wrenching to hear those words....that evil "A" word.  I thought...surely this is the greatest fear of every parent.  Then I moved on to self pity...I already have a son with special needs and now this.  Why me Lord? Why me?  Then I became obsessed with finding a "cure".  I thought if she could just "take a pill" and get better...we changed our diets...tryed expensive vitamins.  I began to take my focus off Addie and onto the "diagnosis". I began to feel more like a therapist... than a mommy.  It became an overwhelming and lonely process.  

I realized I had forgotten to enjoy the times I truly hated it.  But the Lord has opened my eyes and my heart.  Addie is PERFECT in every way.  She just needs people to believe in her.  She is amazing and perfect just the way God made her.  She IS how she is meant to be.  She sees the world in a completely different way than most people and that's what makes her so special.  

I feel like I wrapped myself up in a cocoon...and now I am learning to stand up and fly.  This is it.  This is my BUTTERFLY JOURNEY.