Some Anniversaries Don't Need To Be Celebrated

Friday, August 26th, was our anniversary.  Not an anniversary that we celebrated.  It was not the anniversary of our first date, proposal , or even our wedding.  Three years ago, August 26, 2008, Abigail Rose (our Curly) was diagnosed with autism.

Every year since, I have known it was the anniversary date.  The first year involved a lot of sadness and a lot of hopelessness.  The second year was met with more sadness and anxiety.  This third anniversary came and went without me even realizing it was the anniversary.

As I was putting away some paperwork in Abigail's school file this weekend, I came upon her diagnosis letter.  Then I realized I had made it through another year learning to live with the autism and letting this day go by without any major fits of depression. 

Abigail is not the little baby, not even two years old, who walked around in circles without looking or engaging with anyone.  She is not the little girl who threw fits left and right without any reason.  She is not the child that could not drink from a cup by herself or care if she was wet or dirty. 

I am not the same parent, either.  I am not the mother who was so scared of "autism" that I could not read a news story or book on the subject without becoming a basket case.  I am not trying to "fix" her anymore.  I am not the parent that let autism be her excuse.  I am not letting her behavior or delays dictate how good I am at being her parent. 

As we approach year three of this diagnosis, I have hope and gratitude.  Hope for communication, whether verbal or not.  Hope for her general well being and happiness.  Hope that I have made the right decisions to put Curly on a good path.  Hope that I will meet professionals that will continue to help our daughter.  Hope for future inventions and treatments that will help not only Curly but all of us with autistic children. 

I have a tremendous amount of gratitude for all who have helped us get to this place.  We were lost three years ago, trying our best to navigate around this diagnosis.  So much information and so many different paths we could have taken.  Thank you to all.  From the CDSA caseworkers and therapists to the doctors to the teachers to the support systems we have become involved with, you will never know what your presence and your guidance has done for us and our little girl. 

Three years have come and gone.  Three years of anxiety, stress, decisions, conflicts, happiness, sadness, frustration, jubilation, and growth.  Abigail is a different girl today.  She is a happy, content, smiley, loving little girl who has a lot of struggles everyday but she faces them head on and I love her more today than I did three years ago because of all she has gone through. 

Abigail, you have made me a stronger, more determined person, and given me more fight than I ever thought I could have.  You gave a purpose and a reason for being here.  I admire you more than you will ever know.

While we do not celebrate this anniversary like others in our life, we remember the triumphs and struggles that got us to this point.  We remember the lows and highs of the past three years.  We know there are struggles ahead but will go day by day for the rest of our days. 

                                                         Abigail  August 2008

Safety in the Community

In the past two weeks, I have heard two complete horror stories about two different individuals with autism.  One is right in our own backyard.  A little girl, age 7, died in her bedroom while her apartment was burning down.  Her parents could not get to her in time.  She had autism.  Our community mourns this little girl who not only was in our local community but also a part of my autism community. 

Last week, I heard a story of a young man, age 20, who lives in California.  His parents had put him in a group home for the developmentally disabled population.  The group home was not watching him carefully and he wandered off.  He did not have language and wandered onto a major freeway.  There, he was hit by a truck and now is in a coma fighting for his life.

In my own home, I have two children with delays.  Our oldest, Curly, is nonverbal and does not always respond to verbal commands.  She wanders away from us whenever we let go of her hand.  She will walk into streets of traffic without even thinking about the consequences.  She will not respond to a simple, "Stop" or "No" and sometimes to her own name.  She could not tell you where she lives or who to call to help her. 

In our home, safety is a major concern.  We have a security door that leads to our street so that she can not run out without us knowing.  We have a fenced in yard so she can play without running into traffic.  We have a gate on her bedroom door so when she wakes up at night, she will not go downstairs and get into kitchen knives.  When we are out in public, one of us always has a hand on her at all times.  Her safety is on our brains, day and night.

One day this past school year, I got a call that Abigail had snuck out of an open gate on the playground at school.  Her teachers had got to her before she could get to a busy street and a full parking lot.  I will forever be grateful to her teachers for this.  I worry about her getting away and not being able to tell someone who she is and why she is lost.  I will always have this worry. 

I feel for all those other parents who have this same worry.  My heart goes out to the above families of the two individuals with autism.  Unfortunately, these stories will continue.  These kids turn into adults that can not make decisions for themselves.  We, as a community, need to get together and provide a neighborhood that will watch out for these kids and adults. 

I guarantee there is an autistic child or adult in your neighborhood who requires additional safety.  Look out for them.  Don't turn away and let another individual with special needs be harmed because we as a community were not equipped to handle them being in our community.

Three Years Ago

This month, it will be three years since our first born was diagnosed with autism.  Barely two years old then and completely in her own world with just glimpses of the baby that we so adored.  We are not those parents that swear at 15 months of age our child went from typical to very not typical.  Abigail's diagnosis was not a shock to our systems.  We had been telling doctors for close to a year prior to her diagnosis that she was not typical and had some issues. 

I remember fighting to get her help.  I remember wishing so much that she would just "snap out of it".  I remember the lies that were told to those around us so that we could make everyone else believe she was "normal".  But mostly I remember that hot summer day in 2008 when the following words were spoken, "We believe your daughter has autism".

It was beyond devastating to me to know now what I had been thinking for months.  I could not imagine what the future was going to hold for her and the rest of our family.  I stopped looking at her life  years in advance and now prayed I could get through each new day. 

The days turned into weeks, weeks into months, and months into years.  There were bad days that went into bad weeks and months.  There were huge great days where I saw a little bit of my Abigail return, even if it was just for a second.  I saw therapists and doctors and teachers help this little girl with the simplest things and work with her for months, even years, to get a new skill that a typical child would get on the first try.  I saw my baby try to communicate but could not get the words or gestures out.

In the past three years, there have been moments of such incredible joy, like the first time she ate real food or signed for "more".  There were times of sadness and frustration, like when the autism tantrums got so bad that she was trying to hurt herself.  Overall, I have seen this baby turn into a toddler and now into a little girl who struggles so much with her abilities and disabilities for that matter.  But I have also seen a little girl who is sweet, funny, and determined. 

Three years ago, I worried about her future.  I still do.  Three years ago, I wondered how I was going to make it through each new day.  I still do.  Three years ago, I thought my world had crumbled.  Now I know it did not crumble, I was given a new path and a new reason for being here in Abigail's world.

Sometimes, I feel as lost in my world as Abigail does in hers.  Sometimes, I need help and usually more help than what I am given.  Sometimes, I wonder what she would be like if she didn't have autism.  Sometimes, I am jealous of those with typical children.  Sometimes, I wish others knew what raising a child with autism was really like.

But always, I am grateful.  Grateful for Abigail.  Grateful for the people that have gotten inside the autism and gave us pieces of this little girl back.  Grateful to be here fighting for her, being her voice. 

I may have not asked for this life but I am so happy to be living a life of purpose because of my curly.